“Autism Assessments – Lay Parents vs Clinicians!”

Most people are expert at something – even if it’s something negative!  Autism diagnosticians such as psychologists and psychiatrists, are, purportedly, the experts in assessing and diagnosing children for autism.

So those clinicians, are the ‘expert’ assessors in making decisions on your child either having, or not having autism.  This is a person (along with colleagues), who most likely has never met the child before.  The child will be in an unnatural clinic environment and with one or more strangers, so naturally will likely not behave in their usual, natural way (the older the child the more likely this is) and may actually be inhibited through anxiety.  The diagnostician will information gather as part of the assessment process, from parents, school (nursery/playgroup/college etc.) and they really merit information that is deemed a ‘professional’ source.

Parents, the Government tell us, are experts in our own children.  Yet all too often, parental evidence taken during an NHS assessment, is seen as inferior to school or other professional advice on the child.  All children behave differently between school and home (and this can be an extremely marked difference in autistics), autistic children can mask a huge amount in school and there is so much autism ignorance among school staff anyway, why should they be relied upon to any degree and certainly not more heavily weighted than parental advice.  What’s the preciousness about ‘professionals’?  I mean think about it – a teacher in charge of a class of 30+ children, who sees an unnatural presentation of the child in an artificial setting that is focused on following ongoing instruction – or the parent who birthed that child, knew them all their life in multiple different settings and sees the best and worst of them while they are unmasked – who is more likely to have the more accurate evidence to provide!

The questionnaires (‘clinical tools’) diagnosticians use are standard, often they have the scoring key on the form (and when they don’t, these are easily obtained) and the rest is common sense, analysing traits, behaviours and difficulties from and in, a real life context. Anyone with half a brain can information gather. It’s just looking for a pattern of evidence, and knowing what to look for in the beginning.  It doesn’t take years of training as a medical professional or psychologist to do this.  The sad thing is, many of these so-called highly qualified people, are so clueless about autism much of the time (they don’t have to have specific autism expertise as a psychologist or psychiatrist to diagnose – basic  ADOS administration training seems to be considered by CAMHS to be all they need), that this is why they over-rely on the clinical tools and sometimes ignore or minimise vital parental evidence.  You can almost see the fear of diagnosing in their eyes.

And of course all the while they disrespect parents as people seeking diagnoses for the sake of claiming benefits, they will continue to overlook parental evidence.  A little bit of respect here please!

What with the agenda not to diagnose in the first place, meaning they may attempt to derail the cause of the autism traits onto something else, such as anxiety or OCD, is it any surprise some autistic children are remaining undiagnosed. These conditions may be co-morbid to the autism, but there can be a deliberate avoidance of looking at the underlying condition that causes the co-morbidities.

An assessor does need to understand other conditions that could have some superficially similar traits as autism, hence a proper assessment should be differential. They would say that this is why it takes a qualified clinician, but there are also assessment tools for those conditions too and a little bit of the right questioning would tease out reasons behind certain behaviours, to know what they were attributable to.  Autism is after all diagnosed as a syndrome of behaviours, it’s an entirely clinical diagnosis – meaning if you have the triad of impairments you are autistic (or as they say ‘meet diagnostic criteria’ or ‘meet clinical threshold’), so there is no reason why a lay person who has done a bit of reading and has the right insights, could not in theory be accurate in diagnosing. Some of the clinicians I have come across are so inept and so reliant on questionnaires, seemingly fearful of deviating from them and unable to give credence to parental information, that it wouldn’t be hard to do better.

Of course, they are also looking for other types of alternative cause for the traits, such as attachment disorder, trauma, or something amiss in the home environment.  Whilst they do need to do this for an fully considered assessment, the parent blame culture ensures these avenues are pursued with far more regularity than they should be.  It’s another stumbling block to diagnosis.

“An expert, more generally, is a person with extensive knowledge or ability based on research, experience, or occupation and in a particular area of study.”

Therefore, who better to know and identify the reason for the child’s difficulties – it is the child who is being assessed after all, not autism as a concept – than their expert parent.  Of course this couldn’t be said for everyone, not all parents would have the ability to do the right reading, express their child’s difficulties in accordance with the concept or context of a condition, especially if it included analysing potential alternatives.  But a fair whack of parents with reasonable intelligence and some research skills and insightful, analytical approach, could do as good a job of assessing their child (or someone else’s!) for autism as a clinician (and in some cases better).  You can also pay to go on ADOS courses.  Of course it will never be, that parents will be empowered with diagnosing their children, or that any such diagnosis would be accepted.  Potential bias/ethical considerations, ulterior motives in a few bad eggs and all sorts of other reasons exist for that.  But the point being made is, that parents are usually the first to recognise their child’s difficulties and ‘experts’ need to take that gold dust on board, value it and respect it.

The NHS has to stop misdiagnosing, failing to diagnose and making such a meal out of assessing children for autism.  Why are there such ridiculously long waiting lists?  NHS NICE states that children should be assessed within 3 months of referral!  Trust what the parents are telling you, utilise their expertise and respect them.  Realise that telling a parent “autistic traits but not enough for a diagnosis” is  failing that child and their family.  They will walk out of there without any support, unless they happen to have co-morbid mental health conditions which they are treated for.  But any such treatment may be useless and even harmful, if their autistic neurology is not taken into account.  And if you do fail that child, their already compromised outcomes may become dire.  Get your autism act together NHS clinicians, or you might just find an army of parents at your doors, who can do a better job at it than you!

“You Know You’re Autistic When…”

Your browser keeps crashing ‘cos you’ve got four hundred and fifty-five tabs on the go…

You have filed your household bills, neatly stapled and hole-punched, in a lever arch folder in strict date order with a note on each one, of when it was paid with full payment reference…

You have a massive collection of matching shoes and handbags but you only wear the same worn, comfy footwear every day…

When trying to recall something you read, you open up a photograph of the scene in your mind and mentally scan the photograph for the information…

You can’t help correcting errors in the messages section below other peoples’ blog posts…

You can tell if a picture is perfectly straight on the wall or not – and if it’s not you have to adjust it until it is…

You line up your ornaments and they have to match either side of the central one…

You buy the exact same meals in your shopping week after week…

You go into a fast food place and are so overwhelmed by the mass of choices, the lights and the expectant face of the cashier, that you end up ordering the same thing every time…

You stand in a queue and the sounds of sniffing, clearing throats, coughing, scratching of the others in the queue makes you want to vomit or have a meltdown…

You go to the cinema and when the trailers and adverts start you have to clamp your hands over your ears…

Hearing someone crunching their food or slurping makes you see red…

You fall out with someone and you cannot forgive the injustice of what they’ve done wrong…

You monologue without realising your partner is bored, but even when they start to walk away to show you they’re bored, you follow them continuing your monologue…

When you’re upset, you suddenly realise you’ve been rocking…

When you’re very stressed by a situation you don’t know how to handle, you suddenly realise you’ve been hand-flapping…

You don’t know when it’s your turn to talk on the ‘phone…

When a seven year old neurotypical child is joking with you, you don’t realise it until they point it out…

You make a mental note to self, to put Post-it notes near the car controls so you can remember which switch does which light…

You bother to write a list of autistic idiosyncrasies…

 

“Male Ego and Autistic Progeny”

Ego is a funny thing.  It makes people proud and vain at one end of the scale or insecure and paranoid at the other.  It isn’t therefore, necessarily a good thing to possess.  But most people have one, unless they have learned to master it and let such burdens go.  The male ego is something that is famously guarded, it’s something females are not supposed to dent.  A man must not feel his “masculinity” is under question.  Machismo, manliness, masculinity…no matter how well hidden it is, in a metro man, a nerd or a hippy, they all have male pride…an ego.

When a man becomes a father, he often seems to see the progeny as a reflection of himself.  The participation of his seed in the process seems to take on a role larger than it played in reality.  It’s almost a primal thing.  He of course only contributed 50% of the genes and therefore characteristics, to that child, but the ego seems to be slightly blinded to that and if something goes awry, many men take it as a personal fault against their self.  This is probably more so in the case of an invisible disability, which is not apparent in the baby, lulling the father into a false sense of security for a while, only to be told later their child is disabled, is autistic.

Many dads of autistic children brush away the worried mum’s initial voicing of concerns, sometimes this leads to disagreement about whether to have the child assessed for autism.  Stories abound on community forums by such mothers, here is a sample:

1. http://community.autism.org.uk/discussions/health-wellbeing/parents-carers/father-ex-husband-denial
2. http://www.circleofmoms.com/autismaspergerspdd-awareness/i-need-help-my-husband-will-not-discuss-or-even-acknowledge-our-son-s-diagnosis-398383

Media articles and blog posts too:

1. http://www.telegraph.co.uk/women/mother-tongue/9602643/Accepting-Autism-one-fathers-path-to-understanding-his-son.html
2. http://www.popsugar.com/moms/When-Mom-Accepts-Child-Disability-More-Quickly-Than-Dad-27330829

Let me tell you what that type of ego-driven denial can do to a child and the family.

Mothers usually know their children intimately.  OK dads usually know their children well, but unless they have become the stay-at-home primary caregiver, they don’t know the child like the mother does.  Mother’s instinct is a very strong thing.  Mothers spent nine months growing that baby in their body, feeling it move, nourishing it, being joined to it by a cord. They often are the ones to feed the baby, sometimes from their own body.  They learn every habit, nuance, whim and personality trait of that child.  They take the child to playgroups and other places where mothers (who notoriously compare their child to the children of peers) congregate, so they pick up a lot.  Of course, if a child is severely autistic it will be blatantly obvious from early on.

So, when you have a dad dismissing mum’s concerns, telling her it’s all in her head, she often will believe it, especially if it’s a first child.  She will question herself, tell herself she’s worrying too much.  And if the dad is unsupportive and attributes the behaviours to the mother’s parenting-style, she will often believe that too.  Especially if she has spoken to any professional about her concerns as the initial reaction is to fob parents off on parenting courses to avoid conducting assessments.  He will cause self-doubt and insecurity in the mother.  He’s worried about his child being stigmatised and the disability being a reflection on himself.  So mum won’t take the child to the doctor for an autism referral, the child won’t be diagnosed and won’t get support.

You then have a situation, where mum is dealing with often very challenging behaviour and nobody believes her that something is up.  This may cause tension and arguments between mum and dad too, mum may be struggling with the majority of the child’s difficulties alone a lot of the time.  Even if mum takes the child to the doctor, if dad-in-denial is there, he will, with that ego of his driving his fear and denial, feel compelled to say that he hasn’t noticed anything wrong, hint that he thinks mum is worrying too much.  And of course, with age-old stereotypes still abounding in society, mum will be viewed as a worry-wort, a bit neurotic and if it’s a first child, inexperienced and needlessly panicking.

So mum may resort to internet research to help confirm or deny her fears.  The pet hate of the vast majority of doctors is internet research.  No matter how bone fide the source, many will dismiss it, because mothers couldn’t possibly know more than the doctors.  Only they usually do when it comes to autism: “Parental Recognition of Autism – Professionals Must Listen!”

Bearing in mind the incompetence of seemingly the majority of CAMHS, who are only too happy to fob families off with “not enough traits for a diagnosis” and the parent blame culture that is rife, with one parent unsupportive the child is almost destined not to be diagnosed, unless their autism is blatantly obvious.  Because all too many doctors say “we don’t want to label the child do we”, what with them guarding resources tightly, we know the real reason they don’t want to.

What does lack of diagnosis do to a child?  They exist in a world of social confusion, struggling with friendships and not knowing why.  They likely have sensory issues and find the world a painful place, wondering why life is so difficult.  They become overwhelmed and meltdown, often feeling ashamed afterwards – because that’s the thing, “high-functioning” autistics are usually painfully aware of their differences.  They may stim and feel ashamed and compelled to hide it, because they’ve noticed other people don’t do it.  They are likely to think themselves weird and wonder why they don’t fit in or feel like other people.  They are likely have additional conditions (ADHD is co-morbid in around 43% of autistics and OCD is often in-built) placing additional pressures on them.  They are likely to go on to develop mental health issues such as anxiety and depression from finding things so difficult.  Mainstream school is very hard for most autistics and impossible for some.  But without a diagnosis that’s where they will be.  Figures of over 80% have been cited for autistics being bullied – other children seem to home in on someone who is different and target them. They will lack understanding of themselves, by secondary school things are likely to start falling apart if they haven’t before.  By then, mental health conditions probably more ingrained due to struggling with an undiagnosed primary condition for so long.

The parents will be seeking out mental health support for their child once things start falling apart, by that point it may be inevitable that a diagnosis follows, but what a tragic and unfair way to reach that point.  And if the child reaches adulthood without a diagnosis, by the time they do (hopefully) obtain one, they may well become very bitter towards their parents for not having them diagnosed sooner.  I have read of some autistic adults estranging themselves from their parents as they were so angry at what felt like a betrayal, for them choosing not to get them assessed and diagnosed and leaving them to live through the above difficulties all that time, without understanding or support.  Most autistic adults are relieved to finally have answers for their difficulties, they know their difficulties are not their fault and they are freed by the knowledge.  So who is any parent to deny their child that right?

The other thing of course, is that if dad is denying the difficulties and brushing them off to other reasons, the child will feel misunderstood and even disbelieved.  For instance, some dads believe a meltdown is the child being naughty and will treat it as such.  If a child school-refuses, they may blame mum for not being firm enough.  This will likely end up being the cause of a less than close relationship between father and child.

So any fathers out there, who are being told by the mother of their child that they believe they need assessing for autism, listen.  What have you got to lose?  If the child is not autistic they won’t be diagnosed.  If they are, you will be enabling them to access the support they need.  The diagnosis only needs to be disclosed on a need-to-know basis.  If the child’s difficulties are that obvious people will have noticed already anyway.  No matter what any official tells you, support usually is diagnosis-based not needs-based, no matter what it says in any policies and if your child has a high enough IQ to manage well enough academically, professionals won’t care about the other difficulties – so that means you must.  And you want your child to have the right support.  The earlier the intervention the better for their longer-term outcomes.  You owe that to your child.  After all, this is not about you, it’s not a choice, it’s a necessity.

 

“Anosognosia and Autism – A Real Concern”

Image courtesy of http://www.treatmentadvocacycenter.org

Most strictly speaking, anosognosia is the individual’s ongoing lack of awareness of or insight into, a medically diagnosed condition they have, due to damage to the brain, a variety of anatomical structures are involved, especially the anterior insula, anterior cingulate cortex, medial frontal cortex, and inferior parietal cortex.  It is insufficient to simply be in psychological denial, for it to be termed anosognosia, but anosognosia is present in people with not only neurological injury e.g. from an accident, but also in people with mental illnesses such as schizophrenia and bipolar disorder.  This means, that the brain differences in those conditions, are damage to the normal functioning of the brain.  Sometimes, the term anosognosia is used to describe denial of the diagnosis too.  I think this should be the case when the level of denial is so absolute, that the individual cannot move past it.

There is however, a dearth of literature on anosognosia in autistics.  Autism is genetically related to schizophrenia (as well as bipolar) and some autistics have co-morbid schizophrenia.  So it stands to reason the the brain differences in autistics can be such, that they could also cause, or contribute, to anosognosia about their autism.  Some autistics may simply deny their condition because they are newly diagnosed adolescents who are embarrassed about being seen as different than peers, or a late diagnosed adult who is struggling with the shock of re-evaluating their whole life through a new lens, or the individual may have co-morbid anxiety which makes them too scared to deal with it.  That’s not actual anosognosia though, time usually resolves this reaction.

Autistics can, not uncommonly, suffer with alexithymia, the difficulty in recognising emotions and the reasons  for them.  I believe this can  contribute to anosognosia.  My eldest autistic child seems to have true anosognosia.  Since being diagnosed with autism over 2½ years ago, she has steadfastly refused to accept her diagnosis.  And I tried selling all the positives, pointing out celebrities and historical figures known to be, or believed to have been, autistic and talking about the talents and abilities it conferred on her.  She was diagnosed late, at age 12, due to professional failures in recognising high-functioning female autistic presentation, but that’s a whole other story.  I thought it was fear and being an adolescent that made her refuse to believe it.  But over time, I have come to realise that it’s more than that.  When she was assessed, she completed self-report questionnaires and selected all the answers that highlighted her as having no problems whatsoever, for personal traits and difficulties.  Everything she was struggling with in school and elsewhere, she attributed to being the fault of others.

She struggled socially, but that was because everyone was “mean”, not because she was emotionally and developmentally behind her peers and couldn’t converse about the same things they did, or because she struggled with reciprocal conversation.  When the teacher’s voice was too loud for her, it was the teacher “booming”, not because she had sensory issues.  She described herself as very helpful, when for example, she has sat many a time, watching me struggling back and forth past her loaded with heavy shopping bags and never once offered to help.  When she wet herself several times in school, it was because she was laughing too much, not because she was so anxious and overwhelmed that she was unable to listen to her body and recognise that she had a full bladder in the first place, or had difficulty speaking up.  When she is constantly unable to manage basic daily minutiae without asking for guidance, it’s because I’ve brought her up to be helpless.  It’s very hard parenting a child who thinks this way.

Even her school, who were trying to deny there were any problems, whilst she was suffering an emotional breakdown failing to cope there, scored her as having difficulties in various areas that she didn’t admit to.  She couldn’t cope with the demands at secondary level, the adult content of the lessons – which was shocking and traumatic, to her developmentally delayed brain – it was like dumping a little 8 year old in high school and expecting them to cope.  She would come home from school and download at length, a monologue of her daily school stresses, pacing in a circle, followed by breaking down sobbing and having meltdowns, where she would bang her head repeatedly on the floor and pick her skin until it bled – but that was because the school was “horrible” and people were “mean”.  Her inability to cope in school and the effect it had on her, resulted her being diagnosed with co-morbid anxiety and depression.  She changed schools, but the same thing happened, so she clearly couldn’t cope in mainstream and then school-refused, she has been off now for 18 months.  Yet she is a very intelligent child, academically excellent with a very superior vocabulary.

So over time, I realised that her denial, is beyond being mere denial.  It’s a literal belief that she really isn’t autistic, an inability to believe it.  Never mind that she has an autistic sibling and parent, so genetically there is something going on, it still couldn’t possibly be her.  I thought time would make her come to terms with it, but it hasn’t.  If any support offered has been autism-related, she refused it.  She has refused social opportunities that would help expand her horizons, yet is upset at having no social life.  As I see signs of alexithymia and very low empathy in her, I believe there is a part of her brain that doesn’t see herself as she really is.  She is confident in some ways, but has a poor-self image at times and will tell me she’s “weird” or “a freak”, which to me are far worse terms than ‘autistic’.  She misunderstands people a lot, she thinks people have been mean all the time.  She externalises her difficulties to such a fervent degree, that the only conclusion is anosognosia.

But this worries me.  Quite a lot.  Her social misunderstanding, naivety and vulnerability mean she does not have the ability to be as independent in the way she imagines she should be.  Her life dreams revolve around fictitious cartoon characters, that ‘autistic living in a fantasy world‘ described by Tony Attwood.  Questions she has asked me, such as why a man would want to abduct a child, coupled with her inability to cope with learning “bad stuff” that would allow her to understand why, means she is stuck in a no-man’s-land of semi-reality.  Her inability to cope when unexpected problems arise, to overreact to phobias she has when outside, her hyper-reactivity and general tendency to panic, all leave her vulnerable.  She flatly denies particular difficulties she has and will only admit to something if she believes it isn’t related to autism (she doesn’t know difficulty speaking up and asking for help is a trait common in autism so she’ll admit to that!).  She has an EHCP because of her difficulties, but asks why she should have one when the other children don’t.

At the age she is now, she will all-too-soon, be considered to have rights, independence and responsibilities that would only be denied/managed on her behalf, if she was deemed to lack capacity.  Because of her high IQ, she would likely to be considered to have capacity, because she would be able to intellectually answer questions that would make it appear so.  And her superior vocabulary, alongside her serious and passive manner with strangers, makes her seem mature, but they can’t see what’s going on inside.  They wouldn’t realise that her understanding of consequences, potential scenarios, awareness of an adequate range of manifestation of danger, lag far behind.  She knows you aren’t supposed to talk to strangers, but she isn’t street-wise, she misunderstands people, she’s innocent and gullible, she panics at the unexpected.  Many autistics can answer questions about dangers and risks based on logic, but there is a mismatch between that logic and an ability to be able to apply it in real life, in real-time.  High-functioning autistic females can also be masters of camouflage and masking.  And parents are elbowed out of the picture sharpish when children reach a certain age.  She has actually said to me that as soon as she is an adult she will have herself “undiagnosed”.  So what happens when a child refuses to accept their difficulties, denies there is any problem and makes a superficially convincing show of it?  What happens when a parent knows that this puts them in a really vulnerable and potentially at risk position?  Professionals will put the rights of the child above the parent’s knowledge of their child and ignore the parent – especially when it conveniently means they can avoid providing resources.  What happens with in situations such as DLA/PIP interviews, if they arise?  She will deny any difficulties and likely lose her DLA.

So I asked myself, do I get a professional to state on record that she has anosognosia?  Trying to foresee the implications of that causes new concerns.  On the one hand, it will be officially recognised and is evidence for any of the above scenarios that might arise, on the other, what if it followed her to adulthood and caused her problems?  What if she became a parent one day and professionals deemed her (rightly or wrongly) as having parenting deficits and lacking insight into them and unable to change?  Knowing the parent-blame culture that exists now and the tragedies occurring to autism families misjudged by social services, it could happen.  It’s a scary prospect.  And if she became a parent, there is a significant chance she’d have an autistic child, what if she refused to recognise autism in her own child and seek help for them?  There are so many potential issues with this.

I believe there needs to be focused research on anosognosia in autistics, there needs to be a way to reach someone with this, to help them understand their neurology and be at peace with it.  Autism is an integral part of who someone is, you can’t separate it out.  If someone needs help, it’s important that they recognise that and accept help from others.  How can someone grow and problem-solve in their life if they don’t understand themselves?  We all need to recognise our weaknesses as well as our strengths, not to allow them to hold us back, but to work with what we’ve got and make the best of it.  And there needs to be recognition in the professional world, that a high-functioning autistic, no matter how high their IQ, cannot be deemed to have full capacity, if they do not have the capacity to recognise their own difficulties and the parental knowledge of the individual must not be dismissed.

The “It’s Just a Difference” Delusion

I’ve read this so many times now.  And it gets more tired every time.  “Autism is not a disability, it’s just a difference.”  It’s oft-quoted by the more strident and vocal autistic campaigners, who are affronted by the mere hint of autism being seen as disabling, or an encumbrance for the autistic or their parent.  They talk of the gifts of autism, of how it’s only a different way of thinking and cite all the famous people either with it, or who are retrospectively suggested to have been autistic.

So who am I to say different?  I am an autistic adult, parent to two children who are also both autistic.  We are all considered “high-functioning” (that over-quoted misnomer).  Therefore I speak from two perspectives, as an autistic adult dealing with the difficulties autism has given me, surviving in a world that doesn’t understand me and as a parent of two children with immense difficulties and for whom I have to battle constantly, to get their needs met.

I am all for singing the positives of autism.  We do have them and some have splinter skills or special talents (my family included!).  I also believe in selling the positives to a child old enough to be told of their diagnosis, because childhood is a time when people are finding their place in the world and need to build confidence and self-belief.  This can apply to newly diagnosed adults too, who are re-evaluating their life to date through new eyes.

I’m still struggling to get my head around what “ableism” means.  I thought I knew, but it’s used at the drop of hat, sometimes about such subtle and complex scenarios, to the point I don’t know any more.  It’s the hotcake of the autism community, well at least among those strident campaigners.  All I can tell you is the truth.  I’m not interested in arguing about whether “person with autism” or “autistic” is more appropriate (although I much prefer the latter), I’m more interested in getting understanding of autism and the adjustments we need, out there.  Because all the while they are lacking, the world is way more challenging than it needs to be for autistics.

So I want to ask some questions, of those autistics who insist that autism is not a disability, not a deficit.  How is it not disabling when…

• …my youngest child cannot understand what peoples’ intentions are, leaving her to constantly assume negative things, leaving her having a meltdown that lasts up to 2 hours?
• …my eldest child (at the age of 13) has needed to sit on my lap for 4 hours sobbing, after first circling the room endlessly downloading what’s happened, because of the stress of her school day?
• …I go to a meeting and my brain cannot handle all the voices contributing and it leaves me unable to process what’s going on properly, and afterwards I need days to recover?
• …my youngest child has aggression and hyperactivity that cannot be curbed and which leaves me at times getting punched and hit with objects?
• …we all have sensory processing disorder, causing much discomfort and difficulty?
• …my intelligent eldest child with a superior vocabulary, is excluded by peers and cannot talk about things at their level, leaving her isolated and lonely?
• …my youngest child has to control everything and everyone around her to an extreme degree and does not respond to any normal parenting technique, leaving her potentially unable to find a successful place in society?
• …my eldest child has such bad OCD that she repetitively questions me until I think I will go crazy from no let-up and why she wastes hours on her OCD habits daily?
• …I am overwhelmed instantly by every meltdown or incessant questioning episode from either child?
• …my children are unable to cope with the “bad stuff” in the school curriculum and are in fact traumatised by it, left with nightmares, intrusive thoughts and panic attacks?
• …we can’t bear busy, chaotic places, they tire our brains and make us overwhelmed?
• …my communication is constantly misunderstood and criticised by neurotypicals, causing constant challenges and making things way harder than they should be?
• …I suffer ‘Aspie burnout‘ with such ridiculous regularity, that I feel obliged to refer people to Christine Miserandino’s “Spoon Theory“ on a regular basis?
• …my children are emotionally and developmentally delayed, meaning they don’t have a full understanding of potential dangers (yet have irrational phobias that affect their lives) and cannot be left alone?
• …my eldest child cannot handle plans changing and will shriek, cry and wail in an overwhelming way when they do, no matter how many times I have explained why life is like that?
• …my youngest child hyper-focuses on sources of anxiety and will find everything a negative?
• …my youngest child has sleep problems and cannot sleep without melatonin?
• …why both my children are on medication for anxiety because nothing else has worked?
• …I feel like an utter alien in the world, my differences are so apparent to me and it seems there is nowhere I fit?
• …my children have all-consuming phobias that cause them to panic?
• …my eldest is so offended by her diagnosis that she refuses to accept it?
• …my eldest was bullied for her differences in school even though nobody knew she was autistic and someone once, outright incredulously asked her if she was autistic?
• …my eldest was so stressed in high school that she was unable to listen to her body and wet herself several times?
• …my eldest has been off school for 18 months and counting?
• …my youngest was unable to integrate into mainstream because it stressed her too much?
• …my children don’t have any idea or understanding of the impact they have on others?
• …my children won’t go out with their dad if I don’t go too, because they have separation anxiety?
• …I was repeatedly passed over for promotion in work and was once sent on a training course in how to interact with people (pre-diagnosis)?
• …my children come at me with multitudes of worries day and night that they can’t stop thinking about, to pour onto me?
• …why I’ve had to buy PECS social stories, punch bags for aggressive behaviour and sensory toys for my child?
• …there have been times when I wanted to take my brain out of my head and leave it on a shelf just to get some peace?
• …my youngest has major meltdowns and rants in public which show no signs of stopping at 11 years old?
• …I find it so hard guessing when it’s my turn to speak on the phone and end up butting in accidentally and hate phone calls?
• …when my youngest has a meltdown which overwhelms me she won’t let me escape to another room, she will follow me, screaming at and hounding me?
• …why I have had endless battles and tribunals to get statements/EHCP’s, diagnoses, school places, support and more?
• …why my eldest has no initiative whatsoever and needs to ask me endless daily minutiae to the nth degree?
• …how even a simple planned or spontaneous outing can end up not happening due to meltdowns and other challenging or exhausting behaviour?
• …you can get a diagnosis of autism or Asperger’s syndrome, which by the nature of the diagnostic criteria, describes deficits and impairments?

I could have made that list so much longer, but I think you get my drift.  As a parent of autistic children, I can honestly say that I frequently go through hell with them.  It is interspersed with the odd moment of humour and there is a whopping amount of love, but the negatives far outweigh the positives and that’s the simple truth.  Not only seeing their difficulties and wanting so much to make things OK for them and feeling irrationally guilty for giving them autism (I had no idea I was autistic when I started a family), but also the awful, health-destroying, relentlessly challenging behaviour I have to deal with day-in, day-out. The sort of behaviour that is unimaginable to some and makes me wonder how I am still standing.

And don’t forget, being autistic myself, I try to see off as many problems as I can, I know in a general sense what things to avoid or will help, but still there is so much you cannot account for, so many difficulties that will still happen and so much behaviour over which you have no control.

I worry about my children.  They have difficulties I don’t remember having as a child.  They seem to be more autistic than me, I see traits that I desperately hope will ameliorate as they grow, I fear for what will happen if they don’t.  And I fear for what might happen when I am no longer here for them.  Who will care?  I have spent their lives anticipating and catering to their needs, nobody else will have that depth of care for them.  So many of their difficulties will not be understood and will be brushed off by others, even those designed to help.

I saw that today, as I have seen so many other times.  In meeting a professional specifically intended to advocate for children.  She didn’t get it and I could see that she would never fathom what she was doing wrong.  So please, don’t tell me it’s not a disability, that it’s only a difference.  I don’t want to be the same as everyone else, because from my autistic eye-view, I don’t like the way a lot of people are anyway.  But there are so many ways in which we are so disabled and it’s definitely not all down to the social model of disability, it’s down to our brains and our internal experience.  The world is never going to be able to change into everything we want or need, because there is too much of what we endure, that is nothing to do with the world.

“Fluffy” Forums Exclude Autistics

The internet is home to a vast array of forums, forums that cater for every type of group possible.  There are support groups relating to particular conditions, whether that be for the individuals with the condition, or parents of children with it.  Autism is no exception.  Sometimes, autistics also have other conditions and will frequent the associated forums.  (We do get about online!)

Being autistic, usually means being frank.  Honesty is the logical approach for autistics, saying it as it is.  The most “high-functioning” among us (usually the ones that mask the most – use a persona to follow social rules) will use forums, sometimes being open about our autism even where the forum is not an autism-related one.  But being “high-functioning” is a curse when NTs expect you to behave exactly like they do, because they give no quarter.

Now, I have touched on this before in a previous post, the issue of being made unwelcome on forums, how sometimes it’s parents of autistic children who surprisingly, are the quickest to exclude autistic adults.  This time, it’s a slightly different angle.  It’s about a seeming culture of fluffiness in forums, where moderators are too quick to jump in and warn or ban members who are telling the truth, because despite it not being told in a malicious way, other members want to stay blind to the truth and are quick to report such posts.  Of course it’s most likely autistics who will fall victim to this happening, precisely because we do tell the truth.

Neurotypicals will all too often take offence at the truth, they want it dressed up, if spoken at all it much be couched in apologetic terms which are mere hints, rather than a bald truth plainly spoken.  But autistics don’t play those games, they aren’t the way we are wired, our brains don’t compute or lend themselves to such social games.  We are intensely confused by them.  Of course, when you are “high-functioning” and analytical, you can recognise behaviours and patterns of behaviour.  But that doesn’t mean you can take part in that – or if you can, it’s an exhausting process of going through the rules in your head and calculating the desired response.  And we may not always get it “right” even then.  I use quote marks there of course, because it might be right for NTs but who says you guys have the prerogative on communication-style?

Don’t forget, an autistic trait is a protected trait according to equality laws, so warning or banning an autistic who is not acting with malicious intent, is discrimination, plain and simple.  Would a moderator take such an action against someone with dyslexia for mis-typing their posts?  If it was possible to display a physical disability into online communication, would they say that wasn’t acceptable?

The line many moderators often draw as to what is considered unacceptable behaviour has been drawn in an unrealistic and discriminatory way.  For instance “be nice” is a seemingly pervasive (and entirely arbitrary!) criterion.  But if autistics speak honestly, they are usually defined as not having been nice, because they didn’t use the fluffy approach.  I have myself, had posts removed, been banned and felt obliged to leave forums due to this problem – and I’m no trouble-maker!  (We can’t have an autistic ruffling the fluff!) Of course I am generalising, there are NTs who do appreciate the honest approach…so this post is of course not aimed at them.  It’s more aimed at the culture allowed and encouraged to pervade by the forum owners.

It also begs the question, if forums are for people to pretend, for people to avoid the truth and to merely seek sycophantic assurances, how useful really are they?  The image at the top of this post intends to represent the point in hand, a fluffy and cute dog, but it has been bred to look like that (nature likely wouldn’t have been so stupid!) and is effectively blinded by it’s facial fluff.  So what use is it’s cute and fluffy fur?  It’s mere decoration.

And this leads me to the fact that NTs are so quick taking offence at the autistic’s lack of fluffiness, that they are missing the fact that an autistic replying to their post is trying to help them with practical solutions, telling them why something is the way it is, so they can recognise the issue and resolve or work on it.  Most autistics want to spread awareness, most autistics offer solutions by default.  Autistics often excel in a particular area (which can be anything!) and we have analytical minds, a tendency to think outside the box.  Why wouldn’t NTs appreciate that type of input and welcome it?

So if fluffy forums have a use, is it not just to have a warm, cuddly environment where people just go for reassurance and similar tales?  I’d rather have forums where you could also obtain practical advice and knowledge, where truth was the main aim.  Who wants misinformation after all.  Isn’t denial a form of misinformation?  And as for dressing up the truth, if an autistic is the person seeking that truth they might miss the hint if it’s couched in fluff, so that again, is a form of discrimination against them, a lack of reasonable adjustment they need to access the service on an equal basis.  Would an able-bodied person expect a person hobbling on crutches to use the stairs the same way they did?  Invisible disability is no less deserving of adjustments.

Of course, some of what is behind this fluffiness is the “PC Brigade“.  Rules have become more and more overbearing, control ever-present and it can feel like the “thought police“are out in force, pervading everything we do.  Maybe there is a fear of forum members taking legal action (for the truth?!) and forum owners are busy covering their collective asses at the cost of discriminating against the minority.  But the minute people stop having empathy for people with communication differences, being appreciative of genuine efforts to help, of making forums as inclusive as society is supposed to be…is the moment humankind has lost it’s humanity.

The Autism Parent’s Social Diary Poem

Here we go, off to CAMHS again
Fighting the LA is such a pain

Another meeting with the school
Where they will treat me like a fool

Need to call Parent Partnership yet again
Must go to the GP with kiddo’s belly pain

Drat, is SENDIST really so close
Now what is that probiotics dose

Need to get a melatonin scrip
Then off to the SENCO I have to nip

The EHCP needs amending
And the LA is ever unbending

Oh yes, the appointment with the EP
Trouble is, I have no time free

In-between dealing with meltdowns galore
There are no ‘not-too-tight’ socks in the drawer

Where are the ear defenders I bought
And the scissors to reduce labels to nought

Surely today, will be calm after school
If not, it really won’t be cool

You’re joking, already the EHCP review
But we have the OT, so what shall we do

I remember reading when I had the time
I remember enjoying a glass of wine

I vaguely remember what it meant to go out
But now all the days in my diary are crossed out

Full of endless battles and meetings galore
There is no time for anything else any more

“The A Word” Has Missed a Trick

“The A Word”…autism, Asperger’s…awareness…angry!

The BBC has done something great, something admirable, it has put on prime-time TV, a much-lauded drama about a family with an autistic child.  Amidst the unfolding plot of an uncle’s recent torrid affair and a grandad being pursued by his tutor for…a torrid affair, lies a family discovering their son is different.  He stands out from his peers because of his quirks, he wanders (apparently miles away, through rolling terrain without his family having been aware he has even vanished from the house until he is collected by friends in a van each time) and he loves listening to music and singing along.

Yay, cry the autism community, it’s great for getting more awareness out there in the public domain.  But hold the front page…hasn’t it missed a trick?  Wasn’t this a golden opportunity to really address some of the most pressing issues in the autism community?  Did it go anywhere near enough?  For several reasons I don’t believe it did.  One is the superfluous and irrelevant sex scenes (why does a drama getting a message across about autism need those!) that totally distracted from the important messages being broadcast, another is the unrealistic autism diagnosis from a single professional when children are diagnosed by a multi-disciplinary team in reality (and how amazingly quickly it happened), then there is the lack of representations of the special needs related struggles families go through before they get to diagnosis and after and still further, is the basis of the programme’s title – the mother’s avoidance of assessment and refusal to accept that her son had autism, to the point she didn’t even want the word uttered.  Most families are desperate for a diagnosis so their child can access support!

But even more than those things, the one that has riled me the most by far, is the completely missed opportunity to get the message out there about autistic females.  Yes, girls have autism too!  The biggest single problem about diagnosis, is the masses of females not being assessed or diagnosed because of the male-researched autism diagnostic criteria.  This has caused totally skewed statistics to be recorded that at best, the gender ratio is 4:1 – that is males to females.  Females are so often misdiagnosed and far less referred for assessment in the first place.  I firmly believe the gender ratio is equal.  The renowned Tony Attwood has gone on record saying the same.

So, wasn’t this a chance to start setting the record straight and addressing the issue of all the undiagnosed autistic females out there?  Struggling in school with labels such as shy, geeky, awkward, tag-along, emotional, anxious, bullied or a loner?  That girls (to our detriment) mask and mimic, makes girls more challenging to diagnose – but that’s because of those damned diagnostic criteria!  Highlighting this problem may have contributed to pressure to update the criteria!

There is information out there about autistic female presentation, the clinical world is in the infancy of awareness and it’s a painfully slow process.  So having a drama with an autistic daughter as the focus would have been a marvellous opportunity, to highlight the superficially more subtle (but no less affected) presentation of an autistic girl, show the challenges the girl faced in school with problems such as bullying and social awkwardness but trying desperately to fit in with friends.  Instead, they showed a stereotypical little boy, who avoided his peers, obsessed over music and rote citations about which band’s song it was from which year and wandered for miles.  All this has done is maintained stereotypes about autism.  There are in fact some males who have the ‘female’ presentation type of autism too by the way.  So how useful is a programme that has continued to stereotype, for public awareness?  What favour has it really done the autism community?

Doesn’t the public already think something’s up with a child who externalises their autism as many males do?  Aren’t they already wondering from that behaviour if the child is autistic?  What about the internalising autistic girl, panicking inside, self-harming alone at home, being misdiagnosed as having a ‘generalised anxiety disorder’ or one of the other oft-dished-out labels they receive? Or the autistic girl labelled as an over-sensitive and over-emotional neurotypical?  Isn’t it about time public awareness was about actual awareness?  Wouldn’t it help some parents with a dawning realisation that their struggling daughter was autistic if they saw this scenario played out on TV?

In all honesty, I only watched the first 2 episodes of “The A Word” I found the carry-on’s around the family too distracting and it wasn’t realistic enough to keep me watching, holding my breath saying “Yes – yes that’s it!” in recognition.

TV Dramas are a clever way of appealing to the masses on a subject matter about which they might not otherwise be interested.  Until it happens to them.  So, BBC, as far as I am concerned you missed a trick big time here and is there any going forward now?  Will the public be interested in another autism drama, I suspect not, the novelty factor has been played out already.

However, ITV, Channels 4 and 5 et al, if you are reading, maybe you can do a better job and will give more thought to the power you hold in your hands to get out the best message you can with the medium you have.  I will watch that space with interest to see if any bandwagon efforts in the right direction appear – so it’s over to you.

Edited to add on 28.5.16 this screenshot of a psychologist talking about yet more negatives of “The A Word” (and which hints at the parent blame culture causing so many autism families trauma):

The Uncharitableness of Autism Charities

 

Sometimes, you can feel no choice but to speak out about wrongs you encounter.  Sometimes, something happens which triggers you to do so.  Today was one of those days.  This is the tale of autism charitable organisations at both national and local levels.

The seed to this post was sown, when I started questioning what autism charities actually do, initially based on my own experiences but then reaffirmed by liaising with others who had  found the same, as well as reading about the experiences of others on forums.  A little bit of reading of some accounts bolstered these views still further.

A few facts about the National Autistic Society (NAS):

The NAS‘ income includes Government funding and also public donations.

71% of it’s  funding goes on staff costs, leaving only 29% for everything else – including actual support for autistics.  This staff, includes staff for it’s schools and admin staff. NAS schools support only 500 autistic children across the UK.  The UK has a population of around 150,000 autistic children.  So…tokenism?  Smoke and mirrors?  A very conservative estimate of how many autistic adults there are in the UK, is based on 1%, 641K – but I have seen the figure quoted as 700K and research shows that for every 3 diagnosed people there are at least 2-3 undiagnosed (and it also cites the rate as 1 in 64).

I once asked some questions about their accounts on the NAS’ Facebook page, I was instructed to message them privately – as if they were scared to let the cat out of the bag and then they blocked me from commenting at all, no reason given.  All I had done was quote some figures from their accounts and make associated points. (you can read their accounts here.)

The NAS runs campaigns, does surveys from which they produce reports, has lots of information about autism on it’s website and runs conferences and training courses.  Of course conferences and training courses are at a charge to delegates and attendees, to at least cover their overheads in running them.  They also have some regional coffee mornings etc. and people can apply to be NAS ambassadors to run things under the NAS flag.

But what physical difference do most autistics feel from such an organisation?  How does it translate on the ground, in day-to-day life?  The NAS has a helpline, when I once called it prior to my youngest child’s diagnosis (whilst on the waiting list to be seen), I was told “We can’t help you without a diagnosis.” and that was that.  I was stunned, as well as left high and dry.  On other occasions having used their email helpline, I discovered that they could not take any action to assist in any form and they sent generic information and links, all of which I had already tried the avenues for, before reaching out to them for help.  And some of their replies took about 4 months to arrive.

The NAS has also failed to speak out about the issue of parents in autism families being falsely accused by professionals, with those accusations sometimes even resulting in children being taken from their families.  They are fully aware of it, they even ran safeguarding workshops to see what angles professionals were dealing with autism families from.  An email conversation and long telephone conversation with a relevant member of NAS staff is also how I know how very aware they are of this problem.  But they have not spoken out publicly whatsoever.  They took the softly-softly approach with the safeguarding workshops, I attended one.  They did not challenge a horrific CAFCASS professional there, who had the most shocking ‘parents are the enemy‘ attitudes towards the family in the role-play.  The most they have stretched to, is giving one such falsely accused parent speaker, Tim Gilling (who also happens to be Deputy Chief Executive and Director of Health and Social Care at The Centre for Public Scrutiny), a platform at a January 2015 safeguarding NAS conference “Getting it Wrong: The Impact on Families” https://www.youtube.com/watch?v=RDKS6NmAEWo  (Most parents however will never have such a platform and no recourse or help, when they find themselves falsely accused, and most professionals will carry on regardless).

Where was the NAS when Monique Blakemore of Autism Women Matter went to the United Kingdom Human Rights Committee “Human Rights Violations Against Parents That are Autistic, Have an Autism Spectrum Condition“?  Why didn’t they publicise the call for research participants for the important survey on autistic motherhood on their website?

I have previously contacted the NAS’ campaigns department over important issues that need raising by them, they are after all the UK’s main autism charity and so have the largest voice and it could be argued, the largest responsibility.  They didn’t respond on any occasion.  I also had cause to contact their legal department over an issue involving an authority’s breach of various laws in regards to autism, three emails and a year later, they never responded there either.  Not a bean.

I additionally contacted them asking for their assistance in organising a fashion show to highlight the issues of females with autism being under-diagnosed.  They were initially enthusiastic – when they thought I wanted to do it all myself and they would just put their name to it as a ‘supporter’.  Why not after all, free publicity which makes them look good.  But once I clarified that I wanted them to fund it and help source a venue etc. they told me their funds were all already spoken for and they couldn’t help.  Really?  What are ticket sales for then if not to cover costs?  And surely a charity’s funding is there to highlight issues for the people it represents anyway.

The NAS cannot police the Autism Act 2009 or the Autism Strategy 2010 (and nobody else is either).  They never highlight that the Government is not policing it either, at best only pointing out how local authorities are faring on implementation of provision across the UK.  Don’t bite the hand that feeds you eh?

A recent post on their Facebook page was met with a string of comments of people speaking out about how neither they nor their children saw any benefit from the NAS and asking what their funding was being spent on.  Some of these people send monetary contributions to the NAS and pay to be members.  As I used to, but found the quarterly magazine didn’t confer any practical help in everyday life and membership didn’t benefit me in any way.

No Better the Devil You Know…

But it’s not just the NAS.  I have encountered a dismally woeful and shocking provision from a local Asperger’s charity which has also shown me how these organisations fail the  very people they are set up to support.

This charity, among other things, assists autistic people with benefits such as DLA by liaising directly with the DWP on their behalf (phone calls and letter writing can be difficult for autistics, especially dealing with layers of departments to get through and staff who don’t explain things clearly).  I gave them authority to do this for me, by signing their requisite letter and was assigned a caseworker, who I met.  Twice.  Other autistics will understand what I mean when I say, that being required to attend meetings is often very stressful, meeting new people is very stressful.  Communication itself, is at times stressful.  It’s a condition with social communication problems, so doesn’t it go without saying?  Other parents of autistic children will also understand when I say, that supporting an autistic child requires a lot of work, assessments, meetings, reports, forms, frequent school liaison, EHCPs, DLA, tribunals …ad infinitum.  When you have two autistic children as I have, you can double the stress, exhaustion and time involved.  When you also have autism yourself…well, you get the picture.

So when this caseworker (who had a pattern of being very tardy – and sometimes non-existent – in responding to status update request emails, involving lots of waiting and chasing) went on maternity leave without a word to me, or what was happening with my case (and apparently not handing it over to anyone either), leaving matters (it transpired) unresolved and with much time having wasted, needless to say this was difficult for me.  In chasing up and finding out there was a new caseworker, he was insisting on me going to meet him at their offices, it was even more difficult.  Especially as they knew I had a school-refusing child on my hands and it involved a train journey to-and-from a not well-served station and multiple other regular commitments to contend with – plus having Ehlers Danlos Syndrome, I am frequently physically exhausted.  Finding out that his manager backed him up on this demand, despite that I had previously met his predecessor and they had all my personal papers and details and therefore knew exactly who I was.  I reminded them that I was entitled to reasonable adjustments and that it was very difficult for me to comply with their request, but they wouldn’t budge, so reaching stress overload with it, I ended up cancelling use of their  service – even though it meant me taking on a challenging matter alone, the like of which they were set up and funded to help people with in the first place.

Fast forward to today, they sent me some of my DLA post they had received, reminding me indignantly (replete with exclamation mark and the envelope only having reached me by great luck, the charity caseworker having totally missed out the whole first line of my address resulting in an associated Royal Mail sticker on the envelope, telling me to inform the sender and with RM having worked out where to send it) that I should have notified DWP of the change in arrangements.  At no time when they ceased providing me their service, had they told me I needed to do this.  As it was them who instigated the arrangement with my signature of authority, I assumed they would have taken whatever action was required to reverse this.  Us autistics tend to take things at face value, we are not good at predicting or knowing peoples’ intentions.  And I kinda had a whole host of other things I had to deal with taking my attention too.  So, with my PC freezing, making emailing impossible at the time and feeling this needed imminently dealing with (indignant exclamation marks can make you feel that way), I had to ‘bite the bullet’ and phone this charity.

Just phoning them dredged up the emotion and stress they had caused me previously by refusing to meet my reasonable needs  and putting barriers in the way to assisting me, so when I asked for the manager (didn’t trust the caseworker with his exclamation marks and inability to even address the envelope correctly) I expected it to be simple to resolve.  How wrong I was.  For the duration of this call, I was made to feel I was in the wrong and that they had tried to be so flexible.  Autistics can find using the phone very hard, I am one of them.  It’s hard knowing when it’s your turn to speak and often you misjudge and can blurt out your points – often at moments you are intending to be helpful, but also the act of communicating over the phone is fraught with uncertainty.  So when this manager started to say something and I uttered a short contributory sentence related to what she was saying, she tersely told me “Can you let me finish!”  How silly of me to expect an autism charity to be autism-aware.  It was like being a naughty schoolchild being told off.

I explained how stressful it was having this situation arise, especially after them having caused all these delays in the first place and having refused to proceed without putting me through another stress-inducing meeting.  She couldn’t see it – and she wouldn’t have it.  She told me they had tried to be flexible by offering to come to my home.  But I am not alone among autistics in hating having people come into my home, especially strangers.  And by the point this had been suggested, they had already ramped up my stress by being obstructive and causing me to worry about the whole DWP issue still being unresolved, due to the previous caseworker not dealing with it during all that time, that this was no good either.  It wasn’t even a policy requirement – this was their personal preference!  I again questioned why they needed to meet me again at all.  The manager staunchly defended the caseworker’s insistence on a meeting, saying she too “…would feel uncomfortable assisting someone they had never met, with something”.  I asked how it was right, that an autism charity would put their own personal feelings above the very people they were set up to support.  She had no answer for that.  Stony silence.  I pointed out that even if it was a policy, I would be entitled to reasonable adjustments in having things done differently, according to the Equality Act 2010 and was told that they knew all about the Equality Act as they advised other organisations on it!  I was given buckets-full of excuses as to the reasons previous handling of my case was so delayed – including part-time staff, people going off sick etc. – despite these supposed pressures, they still had the time to insist on superfluous meetings based on their own personal preferences (do busy people with a lack of resources have time for such things!).

The emotion of having to deal with this whole scenario had made me upset.  My voice was wobbling.  You could hear I was upset, though I definitely wasn’t shouting.  But instead of offering sympathy and empathy, this manager told me accusingly “you’re raising your voice!”.  I truly wasn’t, I had not been rude or offensive in any way and it was clear this was upset and not anger.  Aside from the fact that voice prosody in autism is often affected as part of the condition and we can speak too loud without meaning to or knowing we are doing so anyway, so she should not have made such an accusation even if I had seemed to be raising my voice.  But she wanted to belittle me and accuse me, and had no understanding of autism.  She wanted to defend their indefensible actions.  I was blameworthy.  She even said to me “well sorry you feel that you’ve not had a good service” (this response is intended to imply it’s untrue, and you are blamed for having that wrongful view, or are being unreasonable – it’s almost legalese to deny liability).  This autism charity, funded by the local authority and barely hanging onto their funding as it is, was discriminating against me – the very person they are supposed to help.  Isn’t charity work about being caring and compassionate?  Isn’t it about having full understanding of the very people you support and meeting their needs?  Isn’t it about providing a service that is accessible and behaving responsibly?  Don’t they have a duty to use their hard-won resources correctly?

And when you point out the effects of what they have done wrong, to still not accept it and try to right the wrong, just makes it cruel.  Quite ironic that their website claims part of their service is to improve wellbeing!

And before I end this post, the ridiculousness of it is, I just had an email from said manager, telling me that the caseworker had only set up the arrangement to receive my post (what would be the point of that!) – not to liaise on my behalf with DWP as she had told me she was doing!  So for all those months (at least a year) they were a glorified post office for me and any DLA issues that needed dealing with, I was totally unaware of.  Having handed me back a pile of correspondence that I now cannot face.  At least when I had to deal with it myself I knew where I was and what was outstanding.  And after all that, I am left with having to also now contact DWP to sort out redirecting my DLA letters, as this charity won’t reverse the arrangement they set up for me in the first place!  Who knows with all the other stuff I have to contend with, if or when I will be able to sort this out.

I can’t bear incompetence.  We all make mistakes, we are all human.  But to not have any pride in your work or thought for others in doing a good job and getting it right, especially in charitable work, to treat people with such disrespect and contempt is a gross failing.

Shame on them.  But this issue brings it home, that charities exist, flying their own flags bragging about what they do, with their staff no doubt patting themselves on their backs for their philanthropic endeavours (“Me?  Yes, I do charitable work luvvie.”), but it’s largely lip service.  The true measure of whether a charity is doing the right thing, is if as many people as possible benefit from the service, if they meet their service user’s needs, if they bother to learn about the condition they supposedly support and if they spend their money to benefit the people they serve.  Hence the wolf in sheep’s clothing – the outside is an admirable cause, but the inside is all about the money, self-serving, self-glorification and self-aggrandisement.  So I say to these charities:

The Delayed Autistic Brain!

I used to think it was just me, a quirk I had.  This weird thing, where if you have been somewhere away from a familiar environment such as home, for any length of time, upon your return it’s like the place you visited is overlaid like a ghost shadow, an imprint over the real-world view of the present.  Having been on long motorway journeys, I can close my eyes and still see the motorway from the same eye-view as I had whilst sitting in the car and the sensation of driving endlessly along was still there, along with this ghost shadow of the image, even when my eyes are open.

It’s like your body has returned, but your mind is still at where you were before, it hasn’t properly rejoined your body yet, there’s a lag.  Until it does, you don’t feel quite right.  You feel sort of, not quite fully immersed in the present reality you are in.  And your brain is trying to catch up.

I then found out both my autistic children have it too.  And it can make you feel really weird, doolally is our favourite word to describe it.  It can make you feel strange for the whole remainder of the day, like you don’t feel your normal self, slightly dissociated.

So I thought this must be an autistic ‘thing’.  And then I remembered having read somewhere, that autistics have a disconnect between their physical body and their soul.  It was actually something I read, either about rainbow/crystal/indigo children (the spiritual explanations for individuals with autism or ADHD), or something the Asperger’s author William Stillman said about the soul and autism being out of alignment (and I will update this post to state where, if I get to the bottom of the matter!).

And having a search on the matter, there is actually science about this too:

“Autism may also involve a disconnect between the brain and its external environment—an inability of the brain to change properly based on input from the outside world.”

http://www.childrenshospital.org/news-and-events/research-and-innovation-features/breaking-into-the-autistic-brain

“If the problem of autistic spectrum disorder is primarily one of desynchronization and ineffective interhemispheric communication, then the best way to address the symptoms is to improve coordination between areas of the brain.”

Click to access autistic_spectrum_disorders_as_functional_disconnection_syndrome_by_melillo_and_leisman_may_091.pdf

“The corpus collosum is an area in the middle of the brain that links the left and right sides for communication between the two hemispheres. It is smaller in children with autism (Harden, Minshew, Keshavan 2000; Piven, Bailey, Ranson, Arndt 1997) and the neuronal activity that occurs between the two hemispheres of the brain is erratic and poorly connected.”

http://cirrie.buffalo.edu/encyclopedia/en/article/285/

When you also consider the amount of autistics with sensory difficulties, which involve the various parts of the brain, brain stem and autonomic system, it also makes sense that there is this type of brain disconnect.  After all, movement and sensations are associated with the place you experienced them.  Having sensory issues would make someone more inclined to find it difficult to shake off the feeling of being in a moving car, so why not the image of the place you were at too.  My youngest child has Sensory Processing Disorder (SPD) and has always had trouble going on playground equipment that spins, she can be left for hours afterwards with what she calls “a spinning headache”.  So the sensations and clearly the visuals associated with going somewhere, don’t leave autistics so easily.

Sensory Processing in Autism: A Review of Neurophysiologic Findings

“Local motion processing studies show differences in second order (texture-defined) motion processing but intact first-order (luminance-defined) processing, suggesting difficulties with effective integration of incoming stimuli that is magnified with more nuanced tasks (36).”

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3086654/

When visual stimuli is not well integrated, it makes a lot of sense that the brain would need additional processing time to unscramble it, which would account for something akin to perpetual flashbacks for a period of time, hence the ghosting and feeling of still being where you had previously been.

So I am glad to have made sense of and found explanation for this quite ‘freaky’ sensation.  Another anomaly, possibly not discussed, that is part of the autistic experience.  Something an autistic child might express to their parent, as not wanting to go out to avoid this sensation, being upset having gone out or a statement “I don’t want to go, it makes me feel weird!”

State Kidnapping of the Children of Autistic Mothers

What can be done, about the utterly shocking situation of decent autistic mothers (some who were undiagnosed at the time), intelligent and caring women who love their children, having them ripped away on the basis of false accusations, misrepresentation and/or misunderstanding of autism, discrimination – and who were in no way neglectful or abusive to their children? How can this be allowed? What sort of society are we to stand by and watch while it happens?

I have encountered 3-4 autistic mothers online just in the last year or so, who have had 1-4 children each stolen this way, as a result of accusations of MSBP/FII.  All the women have come across as caring, warm-hearted and desperately loving their children and wanting them back.  I have contacts who know of far more cases through almost daily pleas for help, they are just the tip of the iceberg.  Imagine all those out there who don’t know where to turn and never contact anyone for help?

Genuine MSBP/FII cases are very rare.  It is not a condition in itself, it is a set of behaviours caused by mental illness, or in some cases personality disorder, making the parent/carer either induce or invent conditions in their child for attention.  Approximately ⅔ to ¾ of general child protection referrals turn out to be unwarranted.  Imagine how much rarer it is for an MSBP/FII accusation to be true.  In this presentation, Dr Helen Hayward-Brown (medical anthropologist) goes through the relevant points showing how wrongly it is used against parents and how they don’t stand a chance against such accusations.  She wrote a 1999 paper in which she explains extremely thoroughly, how this “diagnosis” is misused and for the reasons it is currently being misused, is almost impossible to prove innocence of, citing many valid points which are overlooked by the authorities blindly accepting it as a truth.  Many of the supposed “traits” of it, are the traits any concerned parent would show in a medical situation with their child.  But autistic mothers being misunderstood, are very vulnerable to these false accusations.

Autism is one of a variety of conditions, which can be either misunderstood or unrecognised by doctors and when parents persist in trying to get their child’s difficulties recognised or supported, sometimes professionals retaliate with false accusations of MSBP/FII.  It does seem to be becoming increasingly common for professionals, protecting resources, irritated with parents seeking support for their child, or parents disagreeing with professionals, to be instigators of revenge accusations.  Professionals stick together, one makes an accusation and it is immediately taken as valid by all the others.  Something documented, however false, follows someone round from report to report, where they all quote the original and one another, as gospel ~ either through confirmation bias, or collusion.

Autistic traits in a parent, mean they may communicate in an atypical way, not show the deference professionals expect and are vulnerable to being misunderstood.  Discrimination makes people ill – the NHS admits it here.  If the child is autistic, especially if undiagnosed, professionals can mistake their autism traits as signs of abuse or neglect.

When an autistic parent is in court, especially if they are undiagnosed, they face a system which despite the law, does not proactively provide reasonable adjustments and is a bed of ignorance and lack of awareness of autism by those in power.  This leaves the parent highly vulnerable to being misinterpreted and wrongly judged.

Some autistic parents are wrongly accused of or diagnosed with, having personality disorders.  I have compiled a list of autistic traits which can be mistaken for grandiosity or narcissism (a particular Aspie mum lost her children by use of such false accusations):

• outspokenness/bluntness because people with Asperger’s are very honest often due to not processing likely impact;
• lack of recognising ‘status’ in people of authority/professionals or lack of understanding of social hierarchies (hence talking to them at an equal level and not showing the deference that NTs might);
• difficulties in voice modulation (speaking either too quietly or too loudly) and loud volume of speech can be mistaken for domineering attitude;
• intense research and absorbing of facts which gives a “mini professor” appearance that can be mistaken for a “know-it-all” by others;
• difficulties in interpreting when it’s turn to speak, giving wrong impression of interruption purposely and in ignorance of the opinions of others;
• monologuing, mistaken as opinionated or selfish;
• difficulties focusing when in conversation with others, so needing to ‘get out’ everything has to say in one go, mistaken for being overbearing;
• difficulties knowing when others are bored or unwilling to listen, can be mistaken for arrogance or selfishness.

There may be some autistic parents (as with non-autistic ones) who need parenting courses or support to adequately parent, but that does not mean that autistic person cannot be a good parent!  There are plenty of amazing autistic parents out there!

The trauma to the child and parents from removing children are massive and lifelong.  That damage cannot be undone.  Your DNA carries forward trauma to future generations.  So what such state abuse does, is damage those they traumatise and their future generations of children too.  Considering also that the care system has such appalling outcomes for children, considering how many foster and adoptive parents abuse children (blood is thicker than water) too, how can they excuse this?

And added to that, as autistic parents often have autistic children, neurodiverse children that have not been diagnosed, are handed to new families on the pretext that their challenging behaviour is caused by abuse or neglect.  How many autistic children are wrongly diagnosed with attachment disorder?  A 2014 Parliamentary Inquiry into UK CAMHS, found that particular groups of children were being failed, one of these groups was adopted children.  Wouldn’t it be interesting to find out, how many supposedly suffering attachment disorder, actually had autism or ADHD?  So some supposedly abused or neglected children were removed wrongfully and even where it was known they were autistic and they were removed because the parents couldn’t cope, services clearly failed to provide the right support to enable them to keep their children.  Only this week, a story has surfaced about a little boy who has been taken from parents with learning disabilities (the mother was said to have autistic traits), who were admittedly devoted and all they needed was the right support to parent adequately.  The little boy’s behaviour was blamed on their lack of boundaries, but with both parents learning disabled and one potentially autistic, what are the odds his behaviour was in fact due to autism?

Autistic children do not necessarily have the same needs as non-autistic children either.  A social worker may for instance believe the parent is not socialising them enough, but many autistic children have meltdowns in the company of peers due to sensory issues, or do not want to play with peers who ridicule them, or they prefer playing alone.  So social workers are judging parents by neurotypical standards, and autism families will therefore always be found lacking according to the tick-boxes.

Social workers are not taking up the autism training they are required to according to the Autism Act 2009.  So more parents will continue to suffer misrepresentation and discrimination.  This is appalling and cannot continue.  Things have to change and soon.  With adoption being (ridiculously) irreversible in the UK (shockingly “public policy” ~ AKA saving face, is considered more important than destroying families lives), it’s too late for many.

If you consider how ordinary parents can fall victim to wrongful child protection interventions, imagine how much worse it is if you have a condition they are ignorant about?

Added to which, the DoH statutory guidance regarding autistic adults is so wishy-washy, authorities can get away without doing very much at all to diagnose and support autistic adults.  The DoH Statutory guidance for Local Authorities and NHS organisations to support implementation of the Adult Autism Strategy applies to all local authorities, NHS bodies and NHS Foundation Trusts and replaces the 2010 statutory guidance. It relates to England only.  Shockingly, authorities’ provision of a diagnostic pathway, adhering to the NHS NICE Guidance on assessing adults with autism and triggering of post-diagnostic assessment of needs, only come under the “should” category, which means, despite the Autism Act 2009, no authority will be held to account if they don’t ensure these are in place and working for all relevant adults.  So misdiagnosis or missed diagnosis, which are all too common, will keep on happening.  What incentive will there be when autism is the most expensive diagnosis to support and authorities are trying to save money?

So the issue of autistic parents being unsupported, misunderstood, misrepresented and discriminated against will continue, unless the Government does something to change it.  The Government has to listen to it’s people, so we must speak out, and speak out loud!

Edited 29.5.16: Preliminary research research results about the discrimination against autistic mothers here: https://insar.confex.com/insar/2016/webprogram/Paper22166.html  “Allegations of fabricated illness, and high rates of surveillance by social services suggest there may be discrimination towards mothers with autism.”

Asperger’s and “High-functioning” Autism – a Disability in Law?

I have been prompted to write this post, in response to recent opinions and comments I have come across, challenging whether Asperger’s syndrome is in fact a disability.  Most puzzled to hear this, since it is an autistic spectrum condition and my understanding has always been, that it most definitely is a disability, I set about investigating.

For the purposes of claiming Disability Living Allowance (DLA), DLA will only be awarded depending on the effects of a condition on the individual, as there is variance between people as to degree and severity of impact.  So clearly the DWP uses the legal definition of a disability as regards impact in coming to it’s decision.  But the DWP medical guidance for decision makers (adults) list, has Asperger’s and autism on it: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/321674/a-z-adult-medical-conditions-jun-14.pdf

According to the UK Government, the definition of a disability under the Equality Act 2010 is:

You’re disabled under the Equality Act 2010 if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.

What ‘substantial’ and ‘long-term’ mean

• ‘substantial’ is more than minor or trivial – eg it takes much longer than it usually would to complete a daily task like getting dressed

• ‘long-term’ means 12 months or more – eg a breathing condition that develops as a result of a lung infection

There are special rules about recurring or fluctuating conditions, for example, arthritis. For more details about the special rules download the ‘Equality Act Guidance’.

Here is guidance on the Equality Act 2010 from the Office of Disability Issues: http://www.equalityhumanrights.com/sites/default/files/documents/EqualityAct/odi_equality_act_guidance_may.pdf  It clearly states that:

“Only those disabled people who are defined as disabled in accordance with section 6 of the Act, and the associated Schedules and regulations made under that section, will be entitled to the protection that the Act provides to disabled people.”

So I checked out section 6 and that states:

“6 Disability

(1) A person (P) has a disability if—

(a) P has a physical or mental impairment, and
(b) the impairment has a substantial and long-term adverse effect on P’s ability to carry out normal day-to-day activities.

(2) A reference to a disabled person is a reference to a person who has a disability.

(3) In relation to the protected characteristic of disability—

(a) a reference to a person who has a particular protected characteristic is a reference to a person who has a particular disability;
(b) a reference to persons who share a protected characteristic is a reference to persons who have the same disability.

(4) This Act (except Part 12 and section 190) applies in relation to a person who has had a disability as it applies in relation to a person who has the disability; accordingly (except in that Part and that section)—

(a) a reference (however expressed) to a person who has a disability includes a reference to a person who has had the disability, and
(b) a reference (however expressed) to a person who does not have a disability includes a reference to a person who has not had the disability.”

According to a legal adviser I communicated with recently, “there is dispute as to whether Asperger’s is a disability”.  To which my question is, by whom?  You will see shortly that this legal adviser knew something the rest of us don’t.  My research turned up the following, in addition to the above information:  http://www.autism.org.uk/about-autism/autism-and-asperger-syndrome-an-introduction/what-is-autism.aspx

“Autism is a lifelong developmental disability that affects how a person communicates with, and relates to, other people. It also affects how they make sense of the world around them.”

So the NAS considers autism a disability, they are at least part-funded by the Government and are universally accepted as the national autism charity in the UK.

https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/85011/disability.pdf see the section on “What is a Disability” on page 4, where autism is included.

A person receives a diagnosis of autism (including Asperger’s syndrome) because they have significant impairments that affect their day-to-day life, that’s why they are called diagnostic criteria.  By it’s very nature, autism means communication impairments.  When it’s a high-functioning autistic condition, having fluent speech makes the communication impairments no less disabling, struggling to understand humour, sarcasm, nuance, infer meaning, non-verbal body language, understand the intentions of others, literalness, all put the autistic person at a significant disadvantage and can cause all manner of difficulties.

The autistic brain is wired differently from the neurotypical brain.  There are over-connections in some areas and under-connections in others.  This means the individual processes things differently, in an atypical way.  That makes everything confusing and difficult, we are an a disadvantage – how is that not a disability?  How else do autistic people fall victim to “mate crime”, hate crime and criminal acts in general?

Many people with autism also have sensory problems, gastrointestinal problems, are more prone to epilepsy and many have a systemic connective tissue disorder known as Ehlers Danlos Syndrome – there is a strong link between EDS and autism.  We are also much more prone to sleep disorders because we have difficulties with melatonin production and processing.  Rigidity is part of autism, the need for routine and difficulty adapting to change or difference, which can have a very negative impact on functioning in day-to-day life, from the point of view of basic necessities as well as the expectations society places on us.  It is a complex condition.  The very fact that employment rates in autism are so poor, is indication enough of the impact it frequently has on the individual.  The fact that children with autism need additional support in education, some with occupational therapy and the rates of co-morbidity of additional conditions including ADHD, anxiety, depression etc. are so high, speaks for itself.  The fact that the person with Asperger’s or HFA is usually painfully aware of their differences and difficulties and the pressure society and we ourselves place on us, is an added difficulty.

Now we come to how a court of law will view a disability. After all, we have the Equality Act 2010 don’t we?  According to all the above, Asperger’s and autism are considered a disability and they definitely fit within the legal definition of the Equality Act.

When an Asperger’s friend had difficulties at work, they were disadvantaged in a way which amounted to discrimination by their employer.  They were put in a position of being compelled to take legal action, which sadly they lost.  Knowing the details of the situation, I felt this was very unjust.  It appeared that the reason they lost, was because the nature of Asperger’s as a disability, does not apply to the disabled overall, as a group.

“…the claimant had failed to establish group disadvantage for the purposes of section 19(2)(b)…. The reference to sharing the characteristic must be to the protected characteristic which in this case pursuant to Section 4 is disability. Despite observations to the contrary recited in the Equality and Human Rights Commission Code of Practice on Employment (2011), but applying the approach which would be adopted to other protected characteristics such as sex and race, the group disadvantage must be all disabled persons as opposed to a discrete group namely those suffering from Asperger’s Syndrome.”

I was dumbfounded by this, it’s bizarre.  By that criteria, no disabled person could claim disability discrimination in a court of law, because there is such a huge variety, nature or type of disability and everyone’s case is therefore different (either as an individual or as part of a “sub-group” of the disabled).  This makes a mockery of the law and renders the Equality Act 2010 effectively useless. It’s like saying if an employer removed a wheelchair ramp for people who are unable to walk and are wheelchair bound, knowing they had employees using wheelchairs who would be unable to access their place of employment, they didn’t discriminate against them because not all disabled people are in wheelchairs!  The friend in question is rightly countering with this:

http://www.legislation.gov.uk/ukpga/2010/15/section/19

19 Indirect discrimination

(1) A person (A) discriminates against another (B) if A applies to B a provision, criterion or practice which is discriminatory in relation to a relevant protected characteristic of B’s.

(2) For the purposes of subsection (1), a provision, criterion or practice is discriminatory in relation to a relevant protected characteristic of B’s if—

(a) A applies, or would apply, it to persons with whom B does not share the characteristic,
(b) it puts, or would put, persons with whom B shares the characteristic at a particular disadvantage when compared with persons with whom B does not share it,
(c) it puts, or would put, B at that disadvantage, and
(d) A cannot show it to be a proportionate means of achieving a legitimate aim.

(3) The relevant protected characteristics are—

    age;
    disability;
    gender reassignment;
    marriage and civil partnership;
    race;
    religion or belief;
    sex;
    sexual orientation.

So it’s very confusing that my friend lost their case, because according to section 6 of the Equality Act 2010 this friend should have been protected.

My friend was penalised for something directly resulting from their Asperger’s and they were not given reasonable adjustments by their employer either, even though their employer knew they had Asperger’s.  It’s even more evident when you consider that the Equality Act 2010 guidance also says this:

“Indirect disability discrimination happens when there is a rule, a policy or even a practice that applies to everyone but which particularly disadvantages people with a particular disability compared with people who do not have that disability, and it cannot be shown to be justified as being intended to meet a legitimate objective in a fair, balanced and reasonable way. As with discrimination arising from a disability, it is necessary to strike a balance between the negative impact of rules or practices on some people and the reasons for applying them.  So you should consider whether there is any other way to meet your objectives that would not have a discriminatory effect.”

It sets a worrying precedent that a court of law came to this finding.  It gives carte blanche to employers to act as they want with complete disregard to the rights of the disabled, it places the rights of the disabled on very shaky ground.  Or are they now saying that only physical disabilities count?  Are invisible disabilities such as autism not as “important” as physical disabilities?  Because that’s discrimination in itself.

So with a diagnosis of ASC, you may have been to a special school, you may have had a statement of SEN, you may have needed all sorts of support growing up, you may live in supported housing and need support workers, you may claim DLA, you may be medicated for your difficulties and you may have co-morbid conditions causing you additional challenges, but no matter how much you are discriminated against, you cannot claim discrimination because disabled people as a group, do not all have the same disability or difficulties as you.  Well there is yet another law that isn’t worth the paper it’s printed on!

Some autistics like to say “I’m not disabled, I have a difference” and I do agree that the neurology we have is a difference, because autism is not a mental illness and I am also glad of the positive attributes it has given me.  But the way society is, the environment we have to exist in because there is no choice, makes life frequently disabling for most of us, and we’d be lying if we said there were not many disabling aspects of the condition – we would not have been diagnosed otherwise.  That’s not the same as saying you are ‘giving in’ to a disability and not trying to reach for goals or to make a success of your life.  But apparently, legally we are not disabled, despite what it says everywhere you check and we are unprotected in law.  So I ask – who is going to do something about this?  Why has a law been written which excludes those with Asperger’s and high-functioning autism, whilst pretending that it does not?

Autism and Education: Does Inclusion Work?

“Inclusion” – that education buzz word that every parent with an autistic child, most likely has at least some reservations about.  Children at the “severe” end of the spectrum usually attend special schools, as their needs or difficulties are great enough to interfere with education in a mainstream setting.  What about those at the “high-functioning” end of the spectrum?  They are intelligent, with at least an average IQ, they are verbal and can usually manage basic functions like the toilet and self-care to varying degrees that are considered acceptable enough, to be absorbed into mainstream education.  Does inclusion work for those children?  I strongly believe it doesn’t.

High-functioning autistic children probably wouldn’t get their academic needs met in a special school (and there would likely also be sensory difficulties from learning along side children with severe disabilities), so we need to have more schools specifically for these children, who have a very unique set of needs, being academically able but also needing the right amount of reasonable adjustments to make their experience accessible and their wellbeing ensured. Autism rates are rising so this issue can’t be ignored.

Autism awareness is shockingly low in the UK. We end up with lots of ASC children excluded, becoming “school refusers” or just suffering terribly with anxiety and behavioural issues, because mainstream inclusion isn’t working for them. But still, the tick-box mentality prevails and the Government wants to do their utmost to force autistic children into mainstream schools which demand, cajole and pressure them into an NT way of being – the square peg into a round hole.

I’m far from alone in believing inclusion doesn’t work, here are several articles about it:

1. http://www.independent.co.uk/news/education/education-news/specialneeds-education-does-mainstream-inclusion-work-470960.html
2. http://www.teachers.org.uk/files/active/0/costs_of_inclus-pt2.pdf
3. http://www.theguardian.com/commentisfree/2007/jan/11/comment.publicservices
4. http://behaviourguru.blogspot.co.uk/2013/02/when-everyones-special-no-one-is-how.html
5. https://www.educ.cam.ac.uk/people/staff/galton/Costs_of_Inclusion_Final.pdf
6. http://www.allfie.org.uk/pages/useful%20info/integration.html

There are organisations set up specifically for the purpose of assisting parents to communicate their child’s needs to their school.  Surely if inclusion worked, the schools would be prepared for autistic children, trained to support them and understanding of what reasonable adjustments they need?  It’s law after all, the Equality Act 2010 states that everyone with a disability is entitled to reasonable adjustments in accessing education and other sectors of society.  Hearts and Minds is one such organisation set up to help parents:  http://heartsandmindsphones.co.uk/advocacy/  They state:

“The research revealed that 67 per cent of parents worry that their child is not supported appropriately at school, with more than half admitting that their child has experienced negative comments, or bullying, as a result of their condition. Parents described mainstream schooling as a ‘lonely’, ‘scary’ and ‘very anxious environment’.

“With 69 per cent of parents stating that schools are not appropriately aware of their child’s condition and receive inadequate support and information from central Government on how to sufficiently teach them, it’s clear that something has to be done to address this growing problem.” – Ian McGrath, Founder of Hearts & Minds“

In my personal experience, having moved my eldest child from one secondary school where she suffered terrible bullying which the school refused to acknowledge or support her with, and her next school seemingly wanting to do the right thing but needing a lot of badgering and still not “getting it” adequately, I have learned the hard way.  My younger daughter, being in an ASC unit from which she integrates for part of the day, I thought this would give the right support, but ironically (and shockingly) the unit staff seem to have extremely low autism awareness and both children struggle terribly socially.  I don’t feel mainstream staff have anywhere near enough training and they don’t understand the autistic child’s needs, let-alone have the time to support them.  The environment is often too busy, noisy, stressful and demanding for an ASC child, which they may be unable to communicate, instead melting down and disintegrating when they go home.

If an autistic child needs a statement to get by in mainstream school, doesn’t this tell the Government something?  I would also like to ask why autism training is not compulsory for all school staff?  How are they supposed to even try to support autistic children if they don’t understand them?

It seems to be pretty common that autistic children are punished at school for autism behaviours, in the belief that they are just being naughty.  Until there is understanding that the neurology of an autistic child is different to a neurotypical child, then things like this will keep on happening.

It’s hard enough trying to support an autistic child in a mainstream school, but then parents also often have to battle the LA to get a statement (now EHCP) for their child in addition.  There doesn’t seem to be much sympathy for the fact that high-functioning autistic are struggling hugely with anxiety or depression because they are academically able.  If the child is female it’s much worse, because females on the spectrum tend to internalise their difficulties and schools often fail to accept that the child is really in that much distress.

So my belief is that inclusion does not work, staff are untrained in autism, they don’t have the capacity to support the child to the level they need and what is needed is autism-specific schools that cater for the needs of high-functioning autistic children.  Those schools would be set up in such a way that they take into account sensory needs, are run in a way to reduce stress and pressure on the children so that they don’t feel the need to explode onto their families after school, they should allow the children time out when they need it and have on-site ASC trained counsellors who can help them reduce stress throughout the day.

These are the adults of tomorrow, if we don’t get things right now, we could be left with a much greater burden in years to come.

Courts of Protection, MSBP/FII and Autism

With Courts of Protection making decisions on not only mental capacity of adults with autism, but also on the fitness of their parents to remain as their carers and legal advocates, let’s look at whether the right decisions are being made.  A case has come to light regarding a 24 year old male with lower-functioning autism, who was deemed to lack capacity and whose mother had her rights removed and was accused of FII, the renamed Munchausen’s Syndrome by Proxy.  Here are links to three websites/blogs, (1) is journalist Brian Deer’s opinion on the case with a link to the full judgement (2) is a blog on human rights and (3) a website article commentary with some rather vitriolic and closed-minded comments about the mother (and all parents pursuing alternative remedies) below it:

1. http://briandeer.com/solved/mother-lied-protection-mmr-1.htm (the full 92 page judgement from that page)

2. http://ukhumanrightsblog.com/2014/10/15/munchausen-mmr-and-mendacious-warrior-mothers/ Steve Hawkins and Janet Yates are two contributors to the comments, who have also looked at the picture of what happened with this case differently than those condemning the mother and I note, that following their posts responding to the condemners, comments were closed.

3. http://leftbrainrightbrain.co.uk/2014/10/12/brian-deer-wakefield-mmr-mother-fabricated-injury-story

Rather than discuss the details or outcome of the case in the way these sites are doing, I will instead write an open letter style response to The Honourable Mr Justice Baker, the judge who made the findings to remove the mother’s rights and decide that her son lacked capacity, with my comments in bold either replying to his italicised paragraphs or quoting them to highlight my points:

So, this is the mother deemed neglectful and abusive:

“For the first 18 years of his life he lived at home with his parents – his mother, hereafter referred to as E, and father, A – where he was by all accounts generally looked after very well. His parents were and are devoted to him and have devoted much of their lives to his care. He attended local special schools and enjoyed a wide range of activities.”

The mother clearly cared for her son very well and took him for dental appointments and vaccinations (even though vaccinations are not obligatory). This is a mother who had no problems until she came into contact with the LA and other state services.

“Until his late teens the family had no contact with the local authority. At that point, however, social services became involved because his parents were looking for a residential placement where he could continue his education. There is no evidence up to that point of any conflict between members of his family and those professionals with whom they came into contact. From that point, however, the picture changed and there has been almost continuous conflict, in particular between M’s mother, E, and the local authority. M’s parents assert that they have been subjected to a malicious campaign aimed at removing M from their care. The local authority asserts that M has been subjected to a regime characterised by excessive control exercised by E over every aspect of M’s life. More seriously, the local authority alleges that E has fabricated accounts of M’s health problems and subjected him to unnecessary assessments and treatments, as well as imposing on him an unnecessarily restrictive diet, with a range of unnecessary supplements.”

It is unlikely that the mother would invent that she was told by the GP that she was an over-anxious mother, she was also calling doctors for help with her son’s difficulties – signs of abuse and neglect? I think not. Many mothers are referred to as over-anxious by GPs, who are non-specialist in any medical field and who are known to have a complete lack of autism awareness and autism training in most cases, for those very reasons.

“It is the parents’ case that the mother told their GP that he had had a bad reaction to the MMR but was told by him that she was an over-anxious mother and must be imagining it. When E called the GP a second time and said she was calling the emergency services, she was told not to do this, but went ahead because M was going in and out of consciousness. The paramedics and the GP had arrived at the same time, at which point M’s temperature was 104. The GP had told the paramedics to leave. Before going, they had told her that this was a case of meningeal encephalitis. The GP had been verbally abusive to E. The above account, given to Dr. Beck, a psychologist instructed as an expert witness in these proceedings, is similar to that given by the mother to a variety of professionals”

There being no record made of what the mother says she reported to doctors regarding the MMR does not mean she did not report those concerns. I have personal experience of doctors and other professionals not only failing to record information given, but actually making false reports of consultations and other matters and I am not alone in this. Has his honour also not heard of confirmation bias? If a doctor does not believe MMR causes autism, and especially if there is financial incentive [link] for them to give the vaccination, they will be unlikely to record adverse effects, especially if they were reported verbally and they responded verbally to tell the parent that they disagreed there was a connection, because the scientific community has stated there is none. Here is just one study, easily found, which states that many more nurses submit yellow cards regarding vaccine reactions than do GPs or hospitals: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1884300/

His honour admits that despite a doctor advising tests, none were referred for:

“Dr Baird thought it appropriate to consider his problems under the general heading of “autistic learning difficulties”. She suggested that he undergo a range of tests but observed that, if all proved negative, there might well be a substantial genetic component to his developmental problem. I note in passing that Dr Carpenter, in his examination of all the records in this case, found no test results following this assessment and was unclear how far the genetic component to M’s autism was explored with the parents.”

So with that lack of care happening, it’s not so unlikely that verbal reports by E were not recorded – especially as professionals rarely welcome patients (or their relatives) questioning them or being well-informed, so would have likely not respected anything she said, or taken offence at her directness and hence brushed her concerns off.

His honour states:

“In none of the records prior to 2000 is there any account of an adverse reaction to the MMR.”

But none of the doctors listed are specialists in vaccinations and subsequent ill-effects – why would for instance, an audiologist have anything to say about the MMR, it’s not their discipline? So the mother would logically not have reported it to those specialists.  Why is this seen as evidence of fabrication?

Regarding Andrew Wakefield, he has said on record that he did not advise parents they should not vaccinate, only that they should have the vaccinations singly instead of combined, but the Government made that option impossible to parents. This might interest you: http://childhealthsafety.wordpress.com/2012/03/14/government-experts-cover-up-vaccine-hazards/ and this: http://nsnbc.me/wp-content/uploads/2013/05/BSEM-2011.pdf

It was the hospital themselves who recommended the gluten and casein free diet: “He was put on a gluten and casein free diet and prescribed liquid paraffin and Picolax for his constipation.”  So why was E criticised about this?

“According to Dr Carpenter, however, there is no record in the GP notes or any other contemporaneous complaint that M had suffered a gut disorder during this 10 year period.”   Does his honour know how many people suffer gastric discomfort and problems? They don’t all go back and forth to the GP when they can get OTC remedies to deal with the symptoms, so the lack of gastric issues being recorded in that period means very little and if she was seeking alternative remedies these wouldn’t necessarily have been recorded anyway.  Negative assumption again, of fabrication.

“In the following years M continued to receive assessment and treatment from a variety of alternative and complimentary practitioners, including auditory integration and sensory intervention therapy and sound therapy, as well as being treated for routine illnesses by the GP. He was not, however, permitted to undergo any further vaccinations. In 2004, E had refused to give consent for M to receive immunisations for tetanus, diphtheria and polio. In addition, M’s diet was increasingly restricted and he was given an increasing number of supplements.”  Clearly the mother was in no way neglectful, as she was taking her son for GP appointments as required. It is a parent’s right to decline vaccinations, as already stated, they are not obligatory. Is it now a crime to alter diet to find the best one for someone with gastric problems? Or to give vitamins and supplements? I think not! Clearly, the supplements being given were recommended by hospitals also: “By this point, according to a list prepared by E and A, the range of biomedical interventions being supplied to M included a probiotic, six vitamin supplements, four mineral supplements, five trace elements, fatty acids, amino acids, enzymes and a range of homeopathic remedies. E and A said that this combination had been arrived at through the advice of the gastroenterology department of the Royal Free Hospital, the Autism Research Unit at Sunderland University, the Autism Treatment Trust in Scotland and a privately funded naturopath.”  How does this translate as snake-oil salesmen or the actions of an unbalanced mother (quite apart from the fact that vitamins and supplements are every day items – not abuse!)?

The parents asserted, as is their right to do: “The medical profession does little to recognise the chronic medical disease that autism truly is … It is for this reason that we have consistently adopted a biochemical intervention approach and engaged a variety of privately funded specialists, all of whom have made a tremendous difference to the improvement to M’s quality of life and proven that autism is a treatable medical condition. Due to the constant rejection and dismissal of our conviction that we have continually faced, we have chosen only to tap into the NHS for diagnosis of secondary medical complications of a more general nature, local dietary advice and, where specialist expertise was available, in the form of Dr Andrew Wakefield.”  Does this sound like neglectful and abusive parents? No, it sounds like parents with their own views who are perfectly entitled to have them and views which are shared by thousands of others in the autism community. They have been vilified for not conforming to the tick-box mentality that the state would have them do.

I see parents who tried their hardest for their child, planned for his future in the face of obstructiveness from the state – as many parents of autistic children find they have to do, tried to get things right for their son and wanted everything to be the best for him. The Government claims that parents are experts in their own children – clearly that only applies so long as the parents are in full agreement with the state.

Does this sound like a neglectful or abusive parent?  “E made a series of complaints about the standard of care given to M, including that he suffered repeated episodes of ringworm, other fungal infections, conjunctivitis and ear infections, including a burst eardrum. As a result, E spent three weeks staying in a nearby hotel to provide support for M.”  No, it sounds like a parent wanting the best for their disabled child.

A dentist claims E was informed of the presence of an abscess but there was nothing in writing to E to say that this is so, only the dentist’s personal record (which as E points out could have been altered for the reason of fear over liability). Where is the controversy? Isn’t a courtroom the place for only facts and evidence? If it’s unprovable it should be disallowed. E emailed the dentist the following day:  “In an email dated the following day, E told Ms Haywood that “nothing has shown up on the x-ray, so I am told it is likely to be sinusitis causing teeth nerves to be on edge.”  so WHY did the dentist not challenge this at the time if she knew it to be an abscess and in requirement of urgent treatment? A GP prescribed antibiotics for the sinus problem E believed her son had: “…and was examined by another dentist at a surgery near to Z House. Nothing abnormal was detected, although the notes of this examination produced in the course of the hearing indicated that E requested that no x-rays be taken. When seen by the oral hygienist at the family dental surgery on 4th September 2012, no signs of an abscess were detected. It was said in evidence that a hygienist would not be in a position to make such a finding.”  So she has taken him for several appointments during this period, there is no watertight explanation as to why she (purportedly) requested another x-ray was not given, but we know that too many x-rays are ill-advised due to radiation exposure and perhaps she had trusted what the previous dentist had told her and the interpretation of the previous x-ray results, as she understood them.  Would a mother knowingly covering up the abscess take their child for further appointments?  So you are accusing her of leaving her son in pain for 14 months, when she had been the one taking him for the check-ups and the dentist didn’t follow up when E put in writing she had been told it was sinusitis?

E also sent an email to Ms Haywood (the naturopath) saying: “This would not only explain the excruciating pain that [M] has experienced, and possibly on/off since October 2011 … that would have been horrendous for [M] to have had to cope with over the last year and just unbearable without intravenous pain relief.”   So clearly it was not her fault the delays happened and she had ensured he had regular pain relief whilst stating all the while that she knew something was wrong, yet lack of action by the dentist is blamed on E.

“It was at this meeting that the chief executive of X College – MH – first suggested that E’s behaviour was akin to “Munchausen by proxy.”   So a very rare psychiatric disorder, that is disputed [link] to exist by some experts, is “diagnosed” by an admin manager!

“E seemed agitated and told the social workers that she had been giving M a hand and foot massage, although the social workers saw no signs of this on M.”  Is this for real? Who has “signs” of having had their hands and feet massaged and why is this some sort of indication of negative parenting!  “E told them that they should not have visited; they should have made an appointment.”  This, along with many of the other comments, about her monologuing etc., to me says that she has Asperger’s syndrome straight away, in view of her general parenting style as well (dedicated and tenacious). So tell me how court psychiatrists instead found her to have personality disorders? This is shocking and clear evidence of high-functioning female presentation of ASC yet again being misunderstood.  The Equality Act 2010 states that reasonable adjustments must be made by all public bodies for people with ASC (or mental health issues), a reasonable adjustment in this case would have been not to misjudge her for her communication style!

“No examination or assessment should be carried out without permission by his new GP.”  GPs are known to be autism ignorant, hence the RCGP has instigated plans [link] to address this precisely because it is a problem and many parents of autistic children as well as autistic adults struggle to even get referrals for ASC assessment, let-alone any co-morbid condition or health issues. Studies have shown that adults with ASC struggle to get health problems recognised and treated [link].  They are also called general practitioners for a reason.  Autistic people often struggle to identify problems with their own body and emotions, struggle to go to see their GP because of feeling intimidated or struggling to communicate and sometimes need a parent or someone who knows them very well to accompany them and help them to communicate with the GP.  Without this, their health needs can suffer.  So how this action will benefit M is highly doubtful and it is likely to in fact hinder him.

“E stated that she is a very precise individual and passed on the information in a way that ensured clarity.” Another sign that she has Asperger’s.

“At the outset I was told by E that she had problems with communications attributable to a long-standing neurological condition.”  She may have all the symptoms of the condition and not been officially assessed or diagnosed, but be self-diagnosed, that doesn’t make her a liar. What she feels is down to a neurological condition is easily down to ASC.  Literalness is another sign of Asperger’s so she could have read the symptoms and decided it fit herself.  A liar is someone who knows something to be untrue but they say it anyway.

“I found it difficult during the hearing to keep E on the point when she was cross-examining witnesses.”  Again, sounding like Asperger’s and it sounds as if his honour is suffering confirmation bias, because he didn’t understand E’s presentation, it was easy to build a picture against her along with the failure in understanding of the other parties and this has gone against her in a very discriminatory way.

“It is an elementary proposition that findings of fact must be based on evidence, including inferences that can properly be drawn from the evidence, and not on suspicion or speculation.”  I don’t believe that court is the place for inferences – that is assumption based on what it looks like (due to majority bias), but what it looks like isn’t always what it is!

“Eighth, it is not uncommon for witnesses in these cases to tell lies, both before and during the hearing. The court must be careful to bear in mind that a witness may lie for many reasons – such as shame, misplaced loyalty, panic, fear and distress – and the fact that a witness has lied about some matters does not mean that he or she has lied about everything – see R v. Lucas [1981] QB 720.”  This also applies to witnesses from the LA, clinicians etc. as many parents know!

“…during the hearing I had the clear sense that she was relishing the opportunity to put across her case about which she plainly feels very strongly.” Again, another Asperger’s trait.

“I have no doubts that E adores her son and her daughter, and that she has devoted much of her life to her children and, in particular, to getting the most that can be achieved for her son. Her devotion is not, however, selfless. On more than one occasion she said that this was case was about her and, although she was quick to retract that comment, when I pointed out that it was actually about M, there was no doubt that she felt she was the main focus of the inquiry. She was the centre of attention and, in my judgment, at times obviously enjoying the experience.”  It was about her too – it was about removing her parental rights, her rights to continue caring for the son she raised for 24 years and this is part of what directly affects her son! “enjoying the experience?” that is a subjective and biased comment which has no place in court.

“It was E’s case that she had suffered from a neurological condition – vestibular neuritis …In her oral evidence she had no difficulty apparently recalling detailed events from many years ago. I have already observed that she showed no difficulty in communicating. Mr Bagchi submits that her suggestion that she had a memory problem was just a crude cover story to avoid criticism for her secret recordings. I agree.”  If E has Asperger’s, then his honour has a lot to understand about ASC communication. Someone can be very high-functioning and verbally superior even, but that doesn’t mean they don’t have deficits in communication, problems with working memory, difficulty focusing during verbal communication etc.

“E used a number of tactics to avoid answering questions and ensure that the interview was focused on materials she considered important, including talking a great deal and without allowing interruption, providing emotive impressions which lacked concrete detail, and jumping from one topic to another. Dr Beck reported that she felt on occasion as if E had embarked on a monologue and she found that she had to be very firm and to interrupt her, and when she did interrupt her, E sometimes apologised and at other times protested, but invariably continued talking about whatever she wanted to talk about, without apparently being influenced by Dr Beck’s interruption. Dr Beck had the impression that E was keen to control the interview and that, if she reflected on this with her, E’s apologies were not genuine and she did not generally change her behaviour as a result.”  Yet again, hyperfocus is an Asperger’s trait, difficulty focusing during verbal communication is again, as is monologuing and digressing from the original point due to inserting much detail.

“I can well understand why his family feel so strongly about him and want to do whatever they can to ensure that he gets the most out of life.”  And yet you will allow psychiatrists who likely have no understanding of ASC to brand her as having personality disorders, and claim she is a risk to him because she doesn’t fit into the LA tick-box?

“Dr Carpenter observed that most of the dietary and nutritional therapies given to M are ones that he has experienced with other patients over the years. He has not objected to them being used in most cases. He also observes that E appears to have normally sought professional help when using therapies; that she has not devised treatment protocols without advice.”  Yet you still made it a problem.

“Dr Carpenter also criticises E for failing to question the reason and purpose of any of the therapies or interventions used or seek unbiased evidence about their effectiveness.”  Yet conversely, patients are not expected to question medical treatments, which many times turn out to have bad side-effects and in some cases be the wrong treatment?  This is also very contradictory considering she is accused of being over-controlling, this is an instance where she has accepted what she was told by several practitioners and tried to assist her son based on their directions, not her own, so she wasn’t the one controlling the direction of treatments.  It is also claimed her son had 6 hours per day of oxygen treatment, how can this be possible if he was living in homes and attending college as well as having access to enriching activities?  Even if it went on while he was still at home, who is to say it didn’t happen while he was relaxing in the evenings?

“It is the quantity and intensity of the supplements given to M that causes concern for Dr Carpenter rather than any single supplement.”  Really? So what if it was traditional medication that needed taking to the same degree? Double standards.

“The concern about the insistence of the diet in this case was, therefore, not so much about the use of the diet per se, (which is plainly not uncommon amongst people with autism, notwithstanding the clear view expressed in the NICE guidelines), but, rather, the fabricated diagnosis which led to the diet being imposed.”  Assumptions have led to the view that the diagnosis was fabricated. At worst, she could be considered highly tenacious and naïve, with a very direct communication style (none of which equal abuse) and at best, no different than many other devoted autism mothers out there – do they all have FII?

“Dr Carpenter notes, however, that most of the supplements appeared to have no known toxic overdose limit.”  Yet still, because you decided she lied about his conditions, this is problematic.

“By and large, it is the sheer range and number of the treatments and their indiscriminate use on an incapacitated person that gives rise to concern, rather than the risk of any harm befalling the individual.”  So it’s now a crime to have someone take a bunch of vitamins every day?

Regarding the assertion of “neurodevelopmental dysautonomia” not being in any recognised diagnostic manual, have a look here at familial dysautonomia which is a neurodevelopmental condition – for microscopic semantics you have branded her a liar again: http://www.ncbi.nlm.nih.gov/pubmed/14981733

“M’s life was increasingly dominated by the programme of treatment to the exclusion of other activities.”  Are you sure? How is it then, that you describe his home life thus, in total contradiction of yourself:

“I do not doubt the devotion which E and A feel for their son. In some ways his life at home was far richer than could possibly be achieved in any care setting. The range of activities arranged for him was plainly very stimulating and beneficial.”  So clearly the LA didn’t want to enrich his life the way his parents did and this is where the disputes have arisen, which therefore makes it look rather correct that as E said, they wanted to decide what to fund, to have control over it all. She is not the only person to take this view in the same situation.

“Without exception, I accept the evidence of the social workers and care staff. Where their evidence conflicts with that given by E, I prefer their evidence and reject that given by E, and indeed A.”  Very unfair and biased judgement and a very slippery slope for human rights, justice and balance.  M’s loving and dedicated father is viewed as an “enabler” in much the same way as someone enabling a drug user.  His support of his wife is used as a criticism against him instead of a testament to her doing the right thing.  This is just appalling.  It is a classic example of the blame culture that exists in the state today.

“Mr McKinstrie identifies several advantages of a return home. First, M clearly has a longstanding affectionate relationship with his parents and sister and they continue to be important people in his life. Furthermore, each is committed to M and in supporting him in what they consider to be his best interests.”  Yet still, you decided that purely on the basis of what are highly likely Asperger’s traits in the mother, which means she thinks somewhat differently and is hyperfocused on giving her son the best, because neither his honour nor the professionals understood this, you have branded her with at least two personality disorders she most likely does not have, and have decided that M must fit in with what the LA want and his own mother is a danger to him? The worst she could be accused of is being overzealous, but clearly has been well-meaning.  This is no reason at all to come between a mother and her son, bearing in mind he is stated to lack capacity, why would you deem her perfectly legal preferences as abuse or damaging?  Not knowing whether he would choose those preferences for himself does not mean it’s correct to assume that he wouldn’t.  Since when has failure to communicate well with professionals been a crime?  Where do you draw the line?  Are parents going to have rights removed for religious or cultural reasons?  For being vegetarians?  For parents who are on the autistic spectrum who also have autistic children needing support, this judgement is tantamount to being completely discriminatory against their specific style of communication.  This whole judgement is a farce and is a dark day for many out there, who have open-minds and don’t fit neatly into the boxes this nanny state would love to have everyone in and don’t blindly consider what the establishment says to be always correct.

Final note – his honour says:

“I merely observe that, if the parents’ assertion about conspiracies is correct, it would amount to gross misfeasance in public office and the biggest scandal in public care and social care in modern times.”

And that means that it can’t be so?  Absolutely not!  There have been multiple cases in the media of public organisations covering up, lying, withholding evidence and huge scandals – the very fact that the term ‘misfeasance in public office’ exists at all, proves that it happens.  I didn’t expect judges to be using straw man arguments or paradoxical statements.  The state is most certainly not above error as this judgement shows, nor corruption, as many have experienced.

The Injustice of State Abuse

The increasing paranoia and accusations against parents, of “emotional abuse” and even “potential for future emotional abuse” has taken hold of the nation.  No parent alive in the UK today, is safe from such accusations.  If you are a parent of special needs or disabled children, your risk increases.  If your child (or you as the parent) have what is termed as an invisible disability (such as autism), the risk shoots higher still.  Ignorance of the presentation of some conditions that are classed as invisible disability, means that behaviours and family dynamics can be misinterpreted.  Unwillingness to admit they got it wrong, causes professionals to dig their heels in further and continue on the path they have chosen.  Dr Nigel Speight a doctor specialising in ME, gave an interview with a Dutch presenter on his own experience of supporting families falsely accused this way.  The Government is aware of this issue, but is protecting professionals who commit such state abuse, there is no accountability for these professionals and the hypocrisy that they are falsely accusing parents, yet causing the very thing they accuse the parents of, cannot go unnoticed or unchallenged.

I read a blog today, about the so-called Cinderella law, which could see parents face up to 10 years in prison for “emotional abuse” of their children.  I am angered at the fact that many special needs children in school, mainstream especially, are being emotionally damaged by their experience in the school environment, but this is not only ignored but considered as normal and acceptable.  Let’s list some environmental factors that social services might consider emotionally damaging to a child and due to which they would intervene:

• showing children films and videos that they are too young for and are traumatic to them
• turning a blind eye to mistreatment of the child
• denying the child their basic human rights to drink water and visit the toilet when they need
• brushing off the child’s concerns that are distressing to them, thereby denying them a voice
• punishing the child unfairly
• forcing the child to become aware of things they are not emotionally ready for
• ignoring the child’s special needs and not adapting their environment accordingly
• ignoring and denying the voice of the child regarding all factors in their environment

Rightly, you would expect social services to question the child’s parenting and possible emotional abuse of the child wouldn’t you?  Now take on board the fact that this is a list of just some of the environmental factors schools subject children to on a daily basis.  Not only is this accepted by the state, but it is actively condoned.  A disability social worker actually said to me “we won’t say anything against a school” and this was witnessed by an independent person.  If a child was showing such distress over their home environment as they do over school, social services would view this as serious harm and remove the child.  Yet a very senior person in social care told me, that my distressed autistic daughter must “get used to it” because “it’s a tough world for these children out there”.  Would they use this same justification if a parent had been responsible?

So why is there such a massive double standard?  How is such state abuse condoned?  The above list represents the average school day, and doesn’t even go into the cases where physical abuse and neglect have occurred in care homes and schools by their staff.  There are never repercussions for guilty parties either.

The state can trump up charges of “emotional abuse” at whim.  Many parents are finding that fighting for provision and support for their special needs child, triggers these false accusations as a result.  Here is an Autism Eye article on this issue: http://media.wix.com/ugd/58c8f1_211d0efb4ae842f5aba2e2d5b1519d42.pdf  Children can be removed from their innocent natural family and placed in foster homes and care placements in which they actually do suffer abuse.

I am sick of the tired phrase bandied about by social workers and their defenders “damned if you do and damned if you don’t”.  It simply isn’t true.  Failings resulting in child deaths, such as Victoria Climbie and Baby P are a result of the culture in social services of preferring to target decent, innocent families to fill up their caseloads with, rather than undertake challenging work with families where there may be violence, drug abuse, alcoholism and as Dr Speight says, “they’d rather sit drinking a cup of tea with a nice family than get chased off an estate by someone with a rottweiler”.

“Emotional abuse” seems to be the ‘in thing’ with social services, families are being wrongly broken up, scarring the children and parents for life.  Some families fortunately get their children back: http://www.mirror.co.uk/news/uk-news/council-unlawfully-took-autistic-teenager-4368205 but there must be many who don’t.  Secret courts and judges accepting biased and dishonest, cherry-picked and misrepresentative professional evidence without question, ensures that for many, there is no justice.

It’s not only about the moral panic prevalent within the UK, it’s about lack of understanding and corrupt professionals.  There must be no place in our society for such people to hold support roles.  Social workers do lie, I have direct experience of it.  They rest easy in the knowledge that they are untouchable, such that they have no compunction about doing so even when independent witnesses can verify they have lied.  It’s abuse of power and misfeasance in public office, not to mention contravention of the Data Protection Act 1998 and in some cases, breach of the Equality Act 2010.

Today I read an article: http://www.bbc.co.uk/news/education-29459303 “Disabled Childrens’ Behaviour Deteriorates at School”.  When the child is high-functioning autistic, they may restrain their distress about school whilst there and release it at home where they feel safe to do so, females in particular.  This means that professionals assume that because the behaviour is happening at home, the problematic environment is in the home.  Yet, contradictorily, if the child acts out at school, they also assume the problem comes from the home environment.

When parents ask for their child to be assessed for autism, oftentimes the professionals they encounter will send them on parenting courses and look at their parenting instead of just getting on and assessing the child for autism or other issues so that they know what they are working with from the start.  This not only ensures delays to a child getting support and prolonged stress on the family, but wastes public resources.

The UK is supposedly a democratic society, a society where justice prevails and families are supported to stay together.  Instead, punitive control, misuse of power and abuse of human rights seem to be taking control steadily.  We must fight this, not become complacent, not wait until it happens to you, before you stand up and speak out.  So I’ll re-use a quote I have used before:

“The greater the power, the more dangerous the abuse”.

Connective Tissue Disorders & Their Correlation to Autism

It seems for years that I have had problems with tiredness, from the age of seventeen came the bad lower back pain followed later by the aching knees and variety of other bodily pains.  You can live day-to-day with aches and pains that drag you down, but aren’t yet entirely debilitating enough to seek medical help for, you kind of think everyone probably has this issue.  Of course I did intermittently go to the GP with inexplicable tiredness and exhaustion over the years, sometimes blood tests were done, but they always came back with nothing of concern.  It wasn’t until very recently I found out about a connective tissue disorder known as Ehlers Danlos Syndrome and began researching, that it all started to add up.  I realised I had a huge host of the symptoms, one of which is many problems with the gastro-intestinal tract.

I knew that people with autism often have GI problems, scientists also know it, but no-one has been joining up the dots. Medicine and science often seem to identify symptoms and identify and treat them standalone, which of course never gets to the root of the problem, never finds out what is causing the symptoms, or doesn’t do so in a systemic way and match up seemingly disparate symptoms.  Two days ago, after being yet again entirely failed by the NHS (rheumatology department failing to diagnose me, not to mention the arrogant GP who was dismissive and highly reluctant to refer me in the first place and ensured the rheumatologist treated me with the level of disrespect and dismissiveness many of us have become accustomed to with the NHS), I was privately diagnosed with Ehlers Danlos Syndrome.  Before I received my diagnosis, I had researched the seemingly anecdotal connection between EDS and ASC.  ‘There must be some research out there’, I thought.  My youngest child was already diagnosed as hypermobile by our local OT and I can see clear signs of it in my oldest child, they are both on the autistic spectrum too, both conditions are genetic, so there had to be a connection. Sure enough, although the research seems to be still in its infancy, I found it:

1) “High-functioning autistic disorder with Ehlers-Danlos syndrome” http://onlinelibrary.wiley.com/doi/10.1111/j.1440-1819.2011.02262.x/full

2) “Autism and Ehlers Danlos Syndrome” http://www.pubfacts.com/detail/1537777/Autism-and-Ehlers-Danlos-syndrome (download full paper from that link)

Here is another article on the effect of EDS on the brain (which also refers to autism, along with proprioception issues and sensory difficulties):

3) “Brain structure and joint hypermobility: relevance to the expression of psychiatric symptoms” http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3365276/

Here is an article which discusses the “Underdiagnosed” condition of EDS :

4) (see 5.5 Psychiatric Features) “Ehlers-Danlos Syndrome, Hypermobility Type: An Underdiagnosed Hereditary Connective Tissue Disorder with Mucocutaneous, Articular, and Systemic Manifestations” http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3512326/

I have read a lot of anecdotal evidence about families with ASC and EDS – isn’t it time science and medicine properly joined up the dots?  I mean even in the article above (3), they state “Differences in the structural integrity of temporal and parietal cortices may underlie wider behavioural phenotypical expression of hypermobility: abnormalities in superior temporal cortex are also seen in autism.¹¹“ so they aren’t actually making a strong enough link, they seem to think the two conditions share the same brain changes but not that they are intertwined in some way and that perhaps EDS is even causative of ASC.  So basically there is an elephant in the room……and no-one is bothering to properly join the dots.

It’s high time that science caught up, if we understand connective tissue disorders we may get to understand autism better and perhaps, genes in common can be identified which could lead to understanding causation. Thought for the day:

“For every effect there is a root cause.  Find and address the root cause rather than try to fix the effect, as there is no end to the latter.”

~ Celestine Chua

Edited 28.5.16 to add:

Two genes which may connect the two conditions are ADAMTS2 and TNXB.  Seen on Pinterest –

Just Brimming with Stimming! (An Expert’s Guide for the Layperson)

“Stimming”, “stims” – or stereotypies as they are correctly known, are a variety of habits which people on the autistic spectrum indulge in.  It’s more than a habit that an NT would have, it’s like a compulsion, and it can increase at times of stress and also at times of excitement or happiness.

Stims range from twirling one’s hair, fiddling with an object, to noises and whole body movements.  Often the more severely on the spectrum someone is, the more obvious their stimming will be.  The higher-functioning among us will often hide our stims, we are well aware “other people” don’t do it, we are busy masking and trying to fit in, so many of us will do our stims in the privacy of our own homes, like some shameful secret.

Wouldn’t it be nice, if we could stim all over the place without anyone minding!  However, it’s hard enough “pretending to be normal” in the words of Liane Holliday-Willey, without drawing additional attention to ourselves.  Some stims might be small enough to do in public without anyone noticing, in which case, lucky person!  I think if you need to stim, holding it all in until you get home might result in the necessity for a long stimming session (ooer missus!) to regain one’s equilibrium.  Jokes aside, stims really can be satisfying, like a refreshing cup of tea, or changing into your comfy PJs.  For me, my stims (which are pretty unobtrusive as stims go, but some of them would still be noticed by others all the same) are a way of releasing stress, but also they are part of me, I need to do them just like I need to blink or yawn, and I do them when I am relaxed also.  The stim I have had for the longest, since childhood, I thought everyone did until I got bigger and started noticing they didn’t and then learned to hide it.

Stims are fine, so long as they don’t (1) involve injury to anyone or are (2) out of keeping with manners and propriety.  Therefore it’s strange that we should feel the need to hide them, but people can be cruel and mean, and target people who show differences.  Difference means you aren’t part of the tribe, you might be a threat, at the very least, you are weak and a potential object of ridicule.

Do all autistic people stim?  No.  My youngest child doesn’t appear to stim whatsoever, although she does twirl her hair round her fingers sometimes, something she used to do a lot as a toddler, but gradually grew out of.  My other child stims, but she also doesn’t do it much in front of people, even the family.  I wonder whether stimming has a connection to the OCD behaviours many autistics have, because coincidentally, myself and my child that stims, both have OCD behaviours.   OCD is a compulsion, and apparently there are brain differences in people with OCD too, so maybe there is a connection.  Although, as I have posted earlier in my blog, there could well be a difference between OCD in autism and OCD in non-autistic people, so that could get confusing.

Parents and teachers and other responsible adults should not try to stop stimming in an autistic child, providing they meet (1) and (2) above.  To do so will place stress on the child and it’s about their needs not yours.  Don’t feel you need to be embarrassed if your child stims when you are out and about.  As you will know as a parent of an autistic child, there are already enough reasons you have learned not to meet the eyes of people staring when your child is behaving atypically compared to NT children.  If you can survive a meltdown from your child, you can survive a stim!

So there you have it, that explains stims, for all those who were curious or just felt like absorbing some information you didn’t already know.

Thought for the day…

Good habits formed at youth make all the difference.

~ Aristotle

“Not Enough Traits for a Diagnosis”

Jeremy Hunt, MP and Secretary of State for Health There is a creeping, insidious problem oozing it’s way through the NHS.  It is the failure to diagnose autism spectrum condition in people with autism.  The new claim is “some traits of autism but not enough for a diagnosis”.  Parents are being told that if their child is coping at school then they don’t need a label, schools are reporting that the child doesn’t show any obvious signs and this prevents a diagnosis being forthcoming.  Adults are brushed off without a diagnosis because they have managed to learn how to fit in – they still of course have autism/Asperger’s, but they are prevented from getting recognition of their difficulties and accessing support they need. I believe there is a secret directive to avoid diagnosing as many people as possible, or only to diagnose the most obvious cases, to avoid a drain on NHS and other state resources*.  This is of course ridiculous and unfair.  Not all people with diagnoses, or their parents, claim benefits or support – but if people need it, it should be there for them.  Autism is a condition the difficulties of which fluctuate according to the environment, and also presents differently in certain environments – such as a clinical one, so what appears one way in a given situation, may not be the full picture.

In December 2014 I became aware of this, which really goes to confirm my suspicions: http://www.dailymail.co.uk/news/article-2653518/32billion-bill-autism-Britain-costliest-condition-Total-cost-treatment-care-support-heart-disease-cancer-strokes-combined.html

Yes, the NHS is cash-strapped, and yes there are many competing demands – so the Government has to ruddy well put more money in to cover the demand.  Autism is not going away, it’s likely an epigenetic condition and the population in general is rising, so there are more cases of autism.  Failure to diagnose is short-sighted, because without support people end up with a whole raft of problems which in the longer term can end up causing more of a drain on resources than the one the NHS/state were trying to avoid in the first place! It’s bad enough that the NHS is full of arrogant clinicians, many of whom are not fully versed in autism as a condition, who fail people diagnostically every day, but when you add a furtive intention to deliberately fail to diagnose people to save money, the system is entirely broken. Autistic people can, with the right support, contribute to society in all sorts of ways, what about Leading Fulfilling and Rewarding Lives?  How can we be able to do that in the first place if the NHS is failing to diagnose people? Read this document, which I came by today (and was eternally grateful for having done so), it’s an absolutely excellent article/paper about those who fail to get diagnosed, are considered “mild” or just having some autistic traits: “Invisible at the End of the Spectrum: Shadows, Residues, ‘BAP’, and the Female Asperger’s Experience” So it’s important that the NHS gets it’s priorities right, trains it’s clinicians adequately, and provides the service so many of us pay for.

Edited 18 months after writing this post, following the discovery that the NAS admits there is a directive not to diagnose autistics: http://www.autism.org.uk/about/diagnosis/criteria-changes.aspx

“In the UK we are aware of situations where clinical professionals have felt under pressure from their employers to under-assess needs in order to ration limited resources.”

Also to add, that is it any surprise there are gross failures towards adults despite the Autism Act?  Shockingly, according to the DoH statutory guidance, authorities’ provision of a diagnostic pathway; adhering to the NHS NICE Guidance on assessing adults with autism and triggering of post-diagnostic assessment of needs, only come under the “should” category, which means, despite the Autism Act 2009, nobody will be held to account if they don’t ensure these are in place and working for all relevant adults.  So misdiagnosis or missed diagnosis, which are all too common, will keep on happening.  What incentive will there be when autism is the most expensive diagnosis to support and bodies are trying to save money?

Thought for the day:

“Each of us is a unique strand in the intricate web of life and here to make a contribution.”

~ Deepak Chopra

Petition to make it a prosecutable offence for state & social care employees to make false records regarding patients

Petition to make it a prosecutable offence for state & social care employees to make false records regarding patients

This is an issue which particularly affects people such as those on the autistic spectrum, who are often misunderstood and misrepresented by GPs, mental health workers and other health care and social care professionals, which can have far-reaching effects on their lives and those of their families.  Sadly, there are state workers who abuse their position of power and they are not held accountable for these gross breaches.  It’s time for this to stop.  Autism is not a mental health problem, it is a neurodevelopmental difference.  Autistic behaviours are not behaviours of mental illness.  The system protects state employees who commit these abuses, which they sometimes do because they take the position that no-one will believe the patient due to their condition.  False attribution of mental health conditions to those who don’t have them, is appalling and must be stopped.  The only current recourse outside of court, is to complain resulting in annotation BUT NOT AMENDMENT of your records, which can easily be made to look as if you are just a sour individual who doesn’t agree with their truthful entries.  This is a travesty and such records follow people for their lives and any other professional looking at those records later will draw conclusions based on what they read, and there is no guarantee they will read any annotation the patient has submitted.  For someone who is a parent, those records can be used to destroy their family.  Under the Data Protection Act 1998 it is an offence to keep records that are not accurate and factual, but this law is not being adhered to by many state employees.  It is time justice was done on this issue.

Please see this link showing why there is a need to sign this petition and protect us all.

http://www.dailymail.co.uk/health/article-2318034/As-patients-wrongly-branded-drunks-heavy-smokers-Alzheimers-victims–Are-doctors-writing-lies-medical-notes-line-pockets.html

Autism Unawareness

Meet the “hedgehog” tenrec, which isn’t a hedgehog and is more closely related to the elephant.  It lives on Madagascan islands, where there are no hedgehogs – and if you saw a tenrec, your first reaction would be to think that it was indeed a hedgehog.  The tenrec is one of many examples the world over, of convergent evolution.  There are also a variety of creatures that evolve to mimic other creatures to avoid being eaten, and can naturally be mistaken for the real thing.  You may wonder why this subject is appearing on an autism blog, of all places.  It’s because of the widespread problem people on the autistic spectrum face, in being misdiagnosed and mistaken by health professionals as having mental illnesses.  It isn’t always what it may first appear to be and assumptions are dangerous.

I will give you some examples I have recently faced myself, with my (now ex) GP who had such abysmal lack of autism awareness it beggared belief.  I have always talked rapidly, not necessarily the whole time, but episodically.  It isn’t necessarily a stress reaction, sometimes I just have a lot to say and need to get it out before I forget what it was I was saying.  The perils of verbal communication.  Rapid speech is a known feature in autism.  And yet I was automatically considered mentally ill with severe anxiety with this trait being termed “pressure of speech” being used as justification by this GP.

Likewise, my habit of wearing earplugs on a cord around my neck, to protect my ears in the event of environmental noise due to auditory hypersensitivity (another known sensory issue in autism) this was listed as a reason for some sort of mental health problem.  This GP spent a long time falsely attributing my Asperger’s traits to mental health issues and circulating his opinion within a professional network.  This is a service failing of massive proportions.  Not only did he fail to understand my ASC traits as such, but he refused to provide me simple reasonable adjustments in accessing the surgery, in direct contravention of the Equality Act 2010 and the Health & Social Care Act 2008.  I did my best to educate him, by providing him with links and quotes regarding legal responsibilities on the practice, but it was ignored.  Instead of doing his duty, he falsely recorded details of consultations and misattributed my traits to severe anxiety.  This led to highly inappropriate and unwarranted referrals because he decided that as a parent, this meant my children were at risk, without any cause.

Both my children are on the autistic spectrum.  They are intelligent, extremely loved, very well-parented, clean and healthy children.  I had chosen to home-educate them for a period, before they were diagnosed as they were unhappy at school and the younger child was not coping there.  On the basis of me home-educating, (with, by my own choice, local authority approved provision) and without asking me any questions regarding how it was going and what we did for socialising opportunities, he jumped to erroneous conclusions, decided I was mentally ill with severe anxiety and whipped up a frenzy in the professional network.  I knew nothing at the time, only finding out much later when he telephoned me and accused me of exaggerating my eldest child’s school difficulties and of causing both children’s anxiety, ignoring documented evidence from my daughter herself and professionals she had reported it to, that it was her school causing her distress.  My eldest child hadn’t yet got her diagnosis, she had recently returned to school and was being bullied there and they were not supporting her anywhere near adequately, they were in fact reducing the level of support she got which was already only lip service.  She was having massive meltdowns every day after school, begging me to to remove her from the place that was causing her such distress.  In over 70% of autistic people, there are additional conditions, with anxiety being one of them.  This GP even asked my daughter herself whether I was causing her anxiety!  She said to me afterwards “It’s not you causing me anxiety, it’s the other way round.” in reference to me dealing with her frequent school-related meltdowns and supporting her.

In the meantime, this GP was calling multi-disciplinary meetings with professionals, again unknown to me at the time, citing potential for emotional harm from me to my daughter, because he was so determined to paint me as a neurotic, mentally ill person.  And bear in mind, that he knew that I had a diagnosis of Asperger’s syndrome.  Her persisted so much with this unprofessional, ill-judged and almost unhinged behaviour, that he was having an effect on other professionals who started to believe him, even with professional evidence available of what my daughter was going through at school being the cause of her difficulties.  The stress and trouble he caused for our family was enormous.  All because he was unaware about autism, and couldn’t think any differently from what his neurotypical, blinkered, text book mentality told him.  And all the time he was continuing this way, he delayed my child getting the right support because he had everyone barking up the wrong tree as to the cause of her difficulties.  Everything I was saying, was proven to be true because my daughter was telling clinical professionals what a terrible time she was having at school, and still I got no apology.

I subsequently found out he had made false recording on my health records when I got copies, and lied about his accusations against me.  He had even made false accusations against me of “hounding” him that he circulated to a network of professionals, because I sent him 2 emails on his NHS email address – which I checked with NHS PALS was OK to use and that it was secure.  I believe he had some sort of personality disorder to behave the way he did, which coupled with his autism unawareness was a recipe for disaster.  The shame and further injustice of it is, that I reported him to the regulatory bodies that ought to take action, and they refused – citing his “opinion” was not something they could challenge!  Never mind the lies he told, false recording he did and unprofessional comments to other professionals about me or his actions delaying my daughter receiving the right support.  And he has withheld some copies of records for the spurious reasons relating to his false interpretations of Asperger’s traits and trumped up safeguarding claims, because of his already disproven emotional harm accusations.

So you see, autism awareness isn’t just about people out there not knowing what autism means, when it’s professionals that have the power to wreak havoc on families and actually cause the very thing they are mistakenly attributing your autistic traits to – anxiety – it’s about huge injustices and abuse of power and something has to be done about this.  So my thought for the day is this:

and I’ll throw this in for good measure: “Your assumptions are your windows on the world. Scrub them off every once in a while, or the light won’t come in.” ~ Isaac Asimov

Professionals Not Understanding Autistic Presentations – Masking

There is such a lot of professional ignorance about autism out there.  Well, I do muse to myself that it could just be in the UK.  We apparently have rates of 1 in 100, but in the US latest figures are 1 in 68.  That tells us that either the Americans are over-diagnosing/have higher rates for some reason – or that the UK is under-diagnosing.  My own thoughts are that the cash-strapped NHS has a directive to only diagnose the most severe cases of autism.  Severity is likely judged by things such as whether the child is disrupting the class at school.  When a child is quiet and compliant at school, their support needs get ignored.  Sadly, this is the case even when parents are reporting their child’s distress and extreme behaviours in great detail and family life is greatly impacted by the fallout of supporting an undiagnosed child.

If you look at the NHS NICE Guidelines for Autism Diagnosis in Children & Young People it says:

http://www.nice.org.uk/nicemedia/live/13572/56428/56428.pdf

1.2.5 When considering the possibility of autism, be aware that:

• signs and symptoms will not always have been recognised by parents, carers, children or young people themselves or by other professionals
• when older children or young people present for the first time with possible autism, signs or symptoms may have previously been masked by the child or young person’s coping mechanisms and/or a supportive environment

1.2.7 Do not rule out autism because of:

• difficulties appearing to resolve after a needs-based intervention (such as a supportive structured learning environment)

The point being, that school (whilst not necessarily “supportive”) can be a routine and structure that enables an autistic child to function with few apparent difficulties.  That doesn’t mean they are not there.  Mental health can greatly suffer if the condition is not recognised and supported.

In the American DSM (which some clinicians in the UK use), it says:

http://www.cdc.gov/ncbddd/autism/hcp-dsm.html

“Diagnostic Criteria for 299.00 Autism Spectrum Disorder

Severity is based on social communication impairments and restricted, repetitive patterns of behavior.

1. Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life).”

So at school, the demands may not have exceeded the child’s capacities, that doesn’t make them not autistic or not entitled to diagnosis.  Many high-functioning ASC children are highly anxious and are so inhibited at school and trying so desperately to fit in, they manage to subdue their behaviour, but this is like a volcano awaiting eruption and once they get home, where they feel safe, they release their anxiety and stress.

Professionals seem to be very keen to blame parenting and fob parents off with parenting courses which of course, won’t make any difference to the autistic child, whether this is deliberate and part of the directive not to diagnose as many as possible, or whether they truly believe there are that many failed parents out there, I will leave you to judge.  They seem to struggle to understand that autism is a spectrum, and that traits vary in their strength and manifestation between individuals.  Because some traits seem more subtle, they are telling parents “some autistic behaviours but not enough for a diagnosis” which is outrageous.

Professionals accusing parents of being the cause of their autistic child’s behaviour is wrong on so many levels.  The environment a behaviour is present in, doesn’t automatically mean that this is the environment causing the behaviour.  So I will leave this message to all those professionals out there, that seemingly cannot think outside of their box, do not understand autism and work in a culture of blame:

Edited to add this research: http://www.tandfonline.com/doi/abs/10.1080/08856257.2014.986915#aHR0cDovL3d3dy50YW5kZm9ubGluZS5jb20vZG9pL3BkZi8xMC4xMDgwLzA4ODU2MjU3LjIwMTQuOTg2OTE1QEBAMA==

“Abstract

This article presents the findings of ethnographic case studies of three girls on the autistic spectrum attending mainstream primary schools and illustrates the difficulties they experience and the ways in which these are often unrecognised. The observations of the girls and subsequent individual interviews with their mothers, class teachers, SENCO’s and ultimately themselves, reveal the personal adjustments the girls make in response to the hidden curriculum and the ways in which these go unnoticed, effectively masking their need for support, and contributing to their underachievement in school. The research also identifies a misunderstanding of autism in girls by some teachers that contributes to a lack of support for their needs, despite their diagnosis. Teachers need to understand how autistic girls present, and how they learn, if they are to recognise the need to illuminate the hidden curriculum. The implications of these findings are that without this awareness autistic girls in mainstream settings are also at risk of limited access to the known curriculum and of social isolation.”

Another autism poem…

Illegal Aliens

They know not us, we are other, us alone

Separate, different, alien, unknown

Judging by rules made for the masses of same

Thinking in their boxes, like a runaway train

The army is building, the new breed it has come

This world of wrongness will become, undone

Like the fly in the ointment, we exist we are real

Ignoring us easily, like it’s no big deal

Huddling together against our kind

You live in the chains of your minds

Despite how hard it is struggling through

I’d rather be like me, than be like you

Pretending to be one of you, to merge

Whilst inside, I feel myself want to surge

Societies that are blind, crumble in the end

Let us show you the way, let us, you mend

The “Triad of Impairments” in Everyday Life

The triad of impairments model, (so named by Wing and Gould, 1979) is an overview of the deficits that define autism.  But how do these translate into everyday life?  The list of deficits provides an explanation of what we find difficult or challenging, but to the layperson (and perhaps even the clinician), it doesn’t tell you what it’s like, or give examples of how it affects a person.  So based on the list in the pictured triad (courtesy of the NAS), I will attempt to explain.

Social and Emotional

Friendships – many people on the spectrum struggle with friendships.  We are not often good at small talk and gossip, the very things that NT’s use to strike up conversation or keep it going.  We can learn the sorts of things NT’s chat about, but it always feels awkward and requires cognitive effort.  We struggle with uncomfortable lulls in conversation, perhaps feeling like we are meant to fill them and thus talking too much or about random things which may not fit the conversation.  This makes for a stilted conversation and can be a key time for the blurting out of inappropriate things.  Having trouble with conversation can make it difficult to get friendships off the ground.  Also, even if we manage to start a friendship, we can then struggle with reciprocity.  It can result in the NT friend doing all the calling up to make arrangements and ending up dropping the friendship, because they misconstrue that the autistic person doesn’t care about maintaining it.  Then there is the socialising itself, how much is the right amount?  Someone on the spectrum can struggle knowing if things are “their turn” too.  Many on the spectrum need little socialising time for a variety of reasons, and the other NT party in the friendship can find this boring or frustrating and therefore the friendship can flounder.

Managing Unstructured Parts of the Day – Having free time can be difficult for an autistic person.  We like order and routine, and if we’re left to our own devices, if we have no special interest or task to keep us occupied, we can waste a lot of time through not being sure what to do with ourselves.  For this reason, break-times at school can be very difficult for the autistic child, coupled with their difficulties socialising with their peers.  This is one of the reasons many parents of autistic children find visual timetables useful, so the child can see what is coming next and is not left to figure it out for themselves.  Unstructured time can cause anxiety, and people with autism often need someone to instruct them on what needs doing so that they don’t forget, our brains are so busy whizzing with other thoughts and processing sensory input, we often need to-do lists to remind us and enable us to keep some structure we need.

Working Co-operatively – People with autism often work really well alone, in fact working with others can actively hinder us.  We can concentrate intensely on things (hyperfocus) and also, can have unique ways of approaching problem-solving.  We also can have issues with empathy, the art of knowing what others are thinking or feeling in a situation, so we can be very one-track minded in our own ways of doing things.  When you marry that with socialising problems, working as part of a team can be very difficult.  If I have realised the best way to do something, no-one can persuade me otherwise and if someone else insists on a different way, I am very unlikely to want to do it their way.  Autistic children often have trouble playing games with others, because they want to play it by their own rules, or even to make up the rules which they insist everyone else must follow.  This way of thinking and behaving, can make an autistic person very unpopular!

Language and Communication

Difficulty processing and retaining information – For me, this is mainly verbal information.  Speaking to people means I have to put a lot of cognitive effort into what they are saying, as I have to try to understand not only concrete information but implications and between the lines stuff.  It is exhausting.  I can forget whole sections of conversation, and they may come back to me a significant time after the event, like random bits of programming code getting thrown out.  Written information is much easier for me, but even that, I may need to re-read several times to ensure I have understood it correctly.  Some things may be taken literally and need time to register.  The more people are in a conversation that I am taking part in, the more likely it is that I will lose meaning and struggle to hear what is being said and hence remember the content.  Note taking is absolutely vital when listening to information verbally.

Difficulty understanding jokes and sarcasm; Social use of language; Literal interpretation; Body language, facial expression and gesture – These are pretty self-explanatory, but I wanted to explain that literal interpretation doesn’t mean that none of us understand or can learn metaphors.  The age-old idea that we believe “it’s raining cats and dogs” means we all think that dogs and cats are literally falling out of the sky, is simplistic and far from being always the case.  I have learned a lot of metaphors and I won’t lie, often I do get a funny visual of the scenario being quoted, but for me literal interpretation is a lot more general in conversation.  It could mean for me, that e.g. if someone says “I’ll call you in the next couple of days” and they don’t call within 2 days, I will think they have broken their word.  Or I will take rules and instructions very seriously and not understand that it isn’t a problem if the exact thing stated doesn’t happen.

I can understand obvious jokes (even if I don’t always get the punchline) but if people make deadpan jokey comments, I usually won’t understand they are joking.  I get this with my NT husband a lot, he’s always joking but it doesn’t sound like jokes to me and I can be indignant at what he says and he will have to remind me he was joking, I never learn that he is joking, it’s the same every time.

I have failed to understand people were being sarcastic to me many times, which I guess is about tone of voice rather than gestures.  I have problems with subtle body language, not with obvious gestures.

Flexibility of Thought (Imagination)

Coping with Changes in Routine; Empathy; Generalisation – People, (even clinical people), often assume this means autistic people have no imagination.  This is absolutely incorrect, it is social imagination we have problems with.  Many autistic people are very creative and imaginative.  In fact, Tony Attwood speaks about Aspie children often living deeply in an imaginary world.  Social imagination means having a good understanding of what is expected in situations or what peoples’ intentions are, and this is something we do have trouble with.  We often like to know what is happening next and don’t like unexpected surprises, which is why routines are important to us.  We plan ahead in our minds based on what we expect and if that changes, it becomes stressful.  Empathy, I have written a whole post about further down my blog.  There are different types of empathy and ‘affective empathy’ (sympathy) is usually intact in autistic people.  The type of empathy we struggle with, is understanding that other people might have different feelings to ourselves, or different viewpoints, or their reasons for behaving a certain way.  Although if we have been in that particular situation ourselves before, we can understand the other person’s behaviour more.  Generalisation is anathema to an Aspie.  We are often very specific and want to know the details.  if someone gives a generalised answer we will want to question them on the exact specifics.  Likewise, if someone asks a very general or open question of us, we will not be sure how to answer it, we will need an exact question to answer.

My thought for the day:

“We are so much more than a triad of impairments”.

Anomalous Experience in ASC Communication…A Musing

Communication is a funny thing.  Even in the world of neurotypicals (NTs), people regularly misunderstand one another.  And that’s just those that speak the same language.   Autistic presentation in communication often seems to lead NTs to jump to the wrong conclusions.  Verbosity for example, can be mistaken for anxiety by someone that doesn’t understand ASC, both in verbal and written communication.  The tendency for people with autism not to always realise how the other party may view the communication, can also cause difficulties in communications between the parties.  Sadly, with autism awareness being so low generally, there is no hope of a magic wand being waved that will make NTs think outside of the box that they are used to being in.

This can make it ultra hard for someone on the spectrum, who not only has to cognitively process their understanding of the communication in question, but to preempt how their communication may be perceived – or misperceived.  Many people on the spectrum, have a processing delay, because of needing time to work all this out.  It’s a minefield out there, as they say.  Verbal communication is therefore usually the most challenging for us, and yet strangely, it is face-to-face communication where people tell me I come across best.  Conversing with more than one person is that bit more challenging, because you are having to follow multiple strands of conversation and process multiple participant’s meanings.  This means post-event, a feeling of exhaustion.  So I do find it puzzling that this real me, apparently comes across better than I do by the written word.

Of course written communication has its own challenges, but verbosity (the middle name of many Aspies) is a natural state, and rattling off lengthy communications is no problem.  However, NTs seem to take it for granted that language will be couched in softeners, floweriness and implications.  They may be always bearing in mind how the other person receives their communication.  Someone with ASC won’t be – or will be on an ongoing learning curve to achieve this and it can be hit and miss.  So the direct and factual style of an Aspie/autie, can easily be misinterpreted as critical, attacking or making things personal.  I am always surprised when people have taken things this way, as 99% of the time (we’re all allowed a grumble once in a while!) it was not my intention.

An Aspie will usually not be adept at, or naturally inclined to, communicating with hidden meanings, or using social tricks to get their meaning across or to achieve their goal.  NTs seem to find this difficult to interpret, so they make assumptions that a straightforward communicating style is being aggressive.  It puts someone on the spectrum at an immediate disadvantage, because then the NTs they are dealing with will form an opinion about them, which is usually negative.  NTs seem not to know how to take a blunt Aspie, and judging by NT standards will usually leave an Aspie in an unfavourable light.  We cannot change that, as NTs are the majority, it’s just one more thing that makes being an Aspie a challenge.

When miscommunication involves professionals, it can become fraught with difficulties.   Professionals will already have, depending on their particular discipline, a tendency to their own professional biases and add human feelings, egos and tendency to assume, and it makes for one runaway train of miscommunication that can cause all sorts of problems.  An Aspie is likely to assume that being factual and giving all the details, will get the other person to understand, but it doesn’t seem to work like that.  I always think people will be grateful for the detail, as it gives them a very complete picture from which to take action or understand a situation.  But NTs seem to get unnerved by what they view as a wall of information (I do punctuate!), from which they struggle to identify what is needed.  I find that strange.

Recently, two people have told me they like the way I put things across in writing, which was nice to hear.  They seemed to find my directness refreshing.  It would be lovely if everyone felt the same way.  People are often busy, and don’t have the time to read lengthy epistles, I get that.  But sometimes, if they just took the time to read it and absorb it, it would save so much trouble later on.  They tend to just file things, or perhaps skim read things, and then forget about them.  Sometimes, spending that little bit of time in the beginning, and asking any questions right then, avoids all sorts of miscommunications and difficulties later.

Don’t we deserve to have a little understanding and accommodation in communication?  Why is the autistic person always expected to understand how NTs communicate and try to fit into that way (which let’s face it, if your brain is not wired that way is never going to be easy), why can’t NTs think a little more openly and not prejudge?  If someone has a visible disability, such as being in a wheelchair, NTs will automatically supply the adjustments needed, such as opening doors for them or providing access ramps.  Is it so much to ask that instead of jumping to conclusions, NTs that know of your condition, will make a few little adjustments for you?

I think one of the hardest aspects, is the NT tendency to gossip about you behind your back when your Aspie behaviours are being misjudged by them.  Even professionals do it.  They already want to pathologise and label everything as it is, so when they come into contact with someone with autism, they misconstrue and label the traits a certain way, usually unfavourably.  When you are in a family situation, that can cause a lot of problems and lead to much barking up the wrong tree.  This is why, I always go back to autism awareness, and how lack of it across the board, causes many problems for those on the spectrum.

So this adjacent message, represents the written word particularly and how even among NTs, people can misunderstand – imagine how much worse that is for someone on the spectrum?  So my final note here, is this quote:

“The majority of dysfunctions that arise and entrench themselves in our lives are caused because of preconditioned expectations and assumptions”

~ Ly De Angeles

When Services Go Bad…Autism Misunderstood

The word “service”, conjures up images of people bending over backwards to help, people asking what it is you need, what they can do for you.  And yet, across the UK (and no doubt other countries), autism families are coming up against obstruction, tardiness, lack of awareness and misunderstanding from these services.  The National Autistic Society has produced reports on how parents complain of the failings of CAMHS to support and understand their autistic children (click here to access their “You Need to Know” report).  Largely, this is a result of clinical staff lacking training in autism and the day-to-day issues it raises and comparing of autistic children to neurotypical children (although there also seems to be an arrogance and refusal to accept their lack of expertise too).  This doesn’t work.  A neurotypical child may have anxiety and depression because of particular triggers or events, but an autistic child likely has it because of the struggle to exist in a world that fails to understand, provide adjustments and support them.  What remedies work for a neurotypical child may not for an autistic child.

Then there are social services.  The name seems almost a misnomer, a Google will bring up multiple horror stories about people’s experiences of them, and this likely intensifies with autism families, because social services staff – even in supposedly specialist disability social services departments, just don’t get the training and have a mindset that doesn’t recognise or support autism and it’s challenges.  It’s about ticking boxes, a culture of looking for blame and cause – often directed at parents, and judging an autistic child (never mind an autistic parent) by neurotypical standards.  They fail to understand not only the autistic character, but the family dynamics and needs.  This issue has resulted in organisations being started up purely to address this problem, by determined and dedicated parents.  One such website is Parents Protecting Children run by Jan Loxley-Blount.  Autistic children (and their families) do need protecting, but what professionals seem to forget, is that their ham-fisted and uneducated dealings can cause the very thing they are supposedly protecting against and which they increasingly seem to be falsely accusing parents of – emotional harm.  An amazing blog by Sue Gerrard (hat off to Sue) goes into great detail about the problems with professional approaches in misunderstanding autism.  Sue is not only a parent to an autistic child but she is trained as a biologist, psychologist and primary teacher and I am a huge fan of her blog.  I recently attended a safeguarding workshop and was horrified at the attitude of one professional attending, who stated that parents were asking for autism assessment of their children just to get state benefits.  The suspicion and nastiness in the comment was vile.  You can’t ever be on a level playing field if they start out with that viewpoint.  The excellently researched scenario acted out at the workshop, showed a family struggling against obstructive services, and who were misunderstood at every turn.  A child suffered an accident, which it was never explained the specifics of, and which the autistic child spoke plainly, without embellishment of, leading to professional assumptions being made without checking – which were automatically directed against the parents and resulted in the parents being prevented from taking their children home.  Not once, shamefully, did a single professional in the workshop identify that the assumption was made to blame the parents, or that in this scenario it was the professionals that the children actually needed protecting from.  Does this sound like a service?  In my view social services needs entirely overhauling and transparency and accountability for their actions needs putting in place, that’s just for any family but for autism families a whole layer of specific training needs to be added.

Even schools, who surely should have good understanding of autism – not only in supporting autistic children struggling in mainstream education but also in assisting in the identification of potentially autistic children.  Some parents will never have heard of autism or have the vaguest ideas of it, with stereotypical views.  So faced with a child with challenging behaviour, especially where they are masking their behaviour at school and offloading it onto parents at home, they may need support in recognising the validity of getting their child assessed – teachers have a role to play.

In the UK, the zero autism awareness of most GPs is now recognised as such a problem, that finally the Department of Health recognised and are addressing the problem.  But these things take time, and in the meantime, parents going to their GPs for help are getting fobbed off, misled and failed by GPs, who are supposed to be referring a child for autism assessment.  When it comes to adults approaching GPs, most of them aren’t even aware of the Autism Act 2009 and the Autism Strategy, making it a legal right for an adult with ASC concerns to get referred for assessment.  So you have to ask, how many undiagnosed children and adults are struggling along without a diagnosis.  My younger child was diagnosed pretty straightforwardly (albeit with a lot of pushing due to waiting lists) but my eldest child suffered the incompetence of our local CAMHS who failed to identify her high-functioning presentation and we had to go for a second opinion.  She has Asperger’s, but the second clinicians did not do a new assessment, they relied on the flawed information from CAMHS and did no clinical testing, so she came out with a diagnosis of PDD-Other (for which no clinical description exists anywhere!) which does not recognise the severity of her traits and is not the correct diagnosis.  Who knows if this will cause her to receive less support than she should do, already one professional has refused to believe it is a diagnosis of autism.  As for myself, state diagnostic services failed me too and I was diagnosed privately (and much more thoroughly than via state assessment).

I sometimes wish people could get inside my brain, it’s like screaming at a wall trying to get understanding and awareness from others, but when it’s professionals, you kind of assume the awareness and understanding will already be there.  They are qualified and trained right?  Wrong!  Until the Government makes a stand, ensures that all relevant professionals receive a minimum amount of autism training, clinicians are really tuned in to the nature of the spectrum, clinical staff keep abreast of research and developments, and the state puts out public service adverts on radio and TV to raise public awareness and spends some money on addressing this issue, autistic people and their families will continue to face brick walls – which ironically in the end means they are likely to cost these services more.  And don’t forget, those autistic children are the autistic adults of tomorrow.  I won’t even go into adult autism services, as they are virtually non-existent.  Quote of the day:

“Without intervention today, the cost of care for adults with autism will be significantly greater and the burden will no longer lie with the parents, but on our entire society.”

~ Jenny McCarthy

Edited to add 15.5.16: new Planet Autism web page about the false accusations and discrimination against autism families (the scale of the issue is huge): http://evolutian.wix.com/planetautism#!discrimination-against-autism-families/n103x