“Autism Assessments – Lay Parents vs Clinicians!”

hello-i-am-an-expertMost 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!

novice-expert

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.

expert-knowledge

“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 direGet 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!

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“You Know You’re Autistic When…”

you-know-youre-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”

male-ego 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!”

Mother Research

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.

Ostrich

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”

anosognosia_lobe_capture2
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

Brain structures implicated in autism 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

Fluffy dog that can't see 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.

Miscommunication

The Uncharitableness of Autism Charities

 

wolf in sheeps clothing 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…

dancing with the devil

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:

charity justice quoteYour Job

State Kidnapping of the Children of Autistic Mothers

kidnapped child 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 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.”

Autistics as Campaigners

Megaphone emoticon

Being strident and militant, does it help your cause – or damage it?

As an autistic adult, I strongly believe in those of us who can, speaking out to get our voices heard.  I believe in us asserting our rights, speaking out against abuses against those like us and fighting for awareness and reasonable adjustments.

Autism by it’s nature, means we can get hyperfocused on issues, we can pursue them determinedly, ignore the status of those which might intimidate others and see the logic behind things that others miss.  But there can be a negative side to it too.  We can be relentless to the point of concentrating on the aspects we have seized on and ignoring other pertinent information, being so detail focused we don’t see the bigger picture.  We can ignore social etiquette to the point that we don’t see we are alienating those we are trying to reach.

There are some in the autism community, who become very angry at people viewing autism as a disability.  This is not helped, by those intending to be helpful, coming forward and pointing out the positive qualities of autism, proclaiming autism is only a difference, not a disability.  Some autistics therefore are very strident and militant in condemning anyone who recognises the deficits in autism and the disabling nature of many features of it.

Let’s get one thing clear, all forms of autism are classified as a learning difficulty.  Not all however, are a learning disability, usually that term applies to those with a low IQ.  But the deficits in social imagination, the failure to always understand humour and sarcasm, to understand the intentions of others and the frequent difficulties those classed as “high-functioning” can have with such things as self-care and independence are all learning difficulties.  Autism (including Asperger’s syndrome) is a diagnosis that is not made unless you meet the criteria of the symptoms negatively impacting your daily life.  Even PDD Other (PDD NOS in the USA) is severely impacting on the lives of those with it.  So let’s stop pretending shall we.

Having said that, we have all heard of autistic savants, many autistics have prodigious memories, photographic memories, amazing creative skills and musicality – and many excel at computers and programming.  Some autistics are productive members of society – or would be given the right support and reasonable adjustments (although employment rates are notoriously low for those on the spectrum).  We cannot however, ignore those who are non-verbal and incredibly disabled by their condition, who will always need supportive care, never be independent and whose parents struggle to support them day-to-day, under immense stress.

Naturally, anyone who speaks out on behalf of autistics is doing so with a good heart and good intentions.  But sometimes, the more strident and militant among our community, can stand on their soap boxes and unfairly condemn others.  Sometimes those others are parents trying to help their children.  Some parents may be misguided, so worried about their child’s difficulties and future that they look for what may amount to ‘cures’ and remedies.

It disappoints me to see autistic campaigners using their anger to rail against those doing their best to support their autistic children.  Naming  them “abusers” without understanding that they only want the best for their children, is inflammatory and unproductive to the autistic cause.  If I saw proof that certain products were harming autistic children, I would be the first to condemn people using them knowing they were harmful.  If unknown products are out there, mainstream research needs to test them without bias or financial interests so that mainstream can accept them to reassure the public, or the authorities need to act to make them illegal if proven to harm.  People trying to help their children may be duped, they may need educating, but they don’t need condemning.  They are worrying who will look after their autistic children when they are no longer around and trying to make their child’s present day-to-day life easier.

I have yet to see evidence that either GcMAF or MMS are harmful.  In fact, I have found much convincing information and worldwide research studies about GcMAF and the horror of it being derived from a blood product is unfathomable.  The company states that it’s scientists use pristine sterilisation processes and their product is purer than the blood the NHS transfuses into patients on a daily basis.  As for MMS, it is apparently chlorine dioxide. Chlorine dioxide is also found in: “…mouthwashes, toothpastes, mouth sprays and as a preservative in eye drops. Citric acid is a naturally occurring, weak organic acid found in a large variety of fruits and vegetables, most notably citrus fruits – lemons and limes. The citric acid in Tristel’s products is used for the acidification of sodium chlorite to generate chlorine dioxide.” http://www.tristel.com/products/healthcare/about-chlorine-dioxide/

The question that remains therefore is whether the concentration being used in MMS is safe (I understand it is used highly diluted before use) and whether it is being used safely.  So far, many claims are being made about how dangerous it is, but I have not seen any evidence that this is the case.  I am waiting to be convinced, so convince me.  Kerri Rivera has a lot of information on her website including this page: http://www.healingthesymptomsknownasautism.com/information-about-chlorine-dioxide/  and also a fact sheet about CD (MMS).   Any substance is open to misuse, that doesn’t mean the substance is necessarily dangerous.  The mainstream has been known to be untrustworthy in preventing simple remedies being available to the public in favour of pharmaceuticals, which are a money spinner of course, a whole industry is built upon them.

Make your own mind up after researching:

Autistic campaigners against both products, don’t appear to have fully researched them and yet are making wild accusations against them and condemning people who use them in good faith.  Apparently reports have also been made to the authorities on these people.  Knowing how professionals like social services can often misunderstand and misrepresent autism families, causing immense stress – including to the autistic children, to take such actions without being 100% sure of your facts is very serious and potentially grossly unfair.

Do autistic campaigners who are highly vocal, angry, militant and strident help autistic causes?  Not if they are blinded by their personal views on autism as a condition and resulting emotions.  Not if they are making themselves unpopular with the very mainstream we need to support us.  You don’t get people to listen by being angry and even less so if you are campaigning based on misinformation.  Who will take us seriously then?  We will be seen as trouble-makers.  Do we want these people representing us?  We are struggling to get our voices heard as it is, do we want the only voices to come from above the parapet with erroneous claims that may not be based in fact and are based on their own prejudices and ignorance?

I say we need to be questioning, open-minded, check our facts, listen to all sides and speak with a strong, firm voice based on truths.  Only then will mainstream organisations be more prepared to listen (or have a harder time saying why not)  and will we gain the respect we deserve when we stand on our soap boxes.

Quiet Voice Better.jpg

 

Imbuing Autistics With Motives They Don’t Possess!

Listen Intent This one’s been brewing for a long while, intermittently I will come up against this incredibly unbelievable situation, where neurotypicals respond to me with such erroneous and gross assumptions about my purported intent, it flabbergasts me.  I’m talking, actually telling me what I did and what it meant.

I do think this is a neurotypical quirk, autistic people are straightforward and honest (not always the height of popularity with neurotypicals).  We mean what we say and say what we mean.  Not so with the average neurotypical.

But I just can’t get used to that reaction, it confounds and confuses me.  How do they think like that?  It’s illogical to assume someone has a game-play behind every word or sentence.  It’s the height of suspicion and how do they not find it draining to communicate that way and analyse things in such a fashion!

So because they imbue my responses with motives they don’t possess, they judge me – or should I say, misjudge me.

Hence the neurotypical reaction, can be resultantly accusational and even aggressive.  I wouldn’t mind so much, but many of these neurotypicals are in fact parents of autistic children!  Is this the reaction they would wish for their child when they become an adult?  Where is the inclusion, understanding, reasonable adjustment, tolerance, open-mindedness and forward-thinking in their reactions?

There is a term for this behaviour, it’s called projection – to be specific, complementary projection.  It is judging people by your own standards, it’s tarring everyone with the same brush, it’s making assumptions – and it’s not on.

To do it to anyone is narrow-minded, but to do it to an autistic is ridiculous.  We are supposed to be the ones with communication deficits, so to end this blog post on a lighter note, we autistics label you neurotypicals as having neurotypical disorder.  😉 And remember…

Communicate Differently

Miscommunication

There endeth the lesson!

Parental Alienation – Or is it? Misrepresentation of Autistic Behaviours

Gavel

http://www.socialworktoday.com/archive/102708p26.shtmlParental Alienation Syndrome — The Parent/Child Disconnect

The above article totally ignores the potential for autism and possible resultant family dynamics in that situation. I will discuss just one scenario where this could be misused against a parent in an autism family.

Imagine if you will, a dad who for a variety of reasons does not accept his child could have autism. It could be that the mother sees the behaviours in an undiagnosed child, but the dad resists accepting the possibility. It could be that the child is diagnosed, but the dad does not accept the child’s differences or understand the condition. Some of the reasons this might occur is ego-based, fear, or even that the dad has autism himself so the child’s behaviours seem typical to him.

A quick Google will tell you that this problem is quite widespread.

I will quote some paragraphs from the above document and if you are an autism parent, you will see quickly, how dangerous this could be to you in an acrimonious separation situation.


2. Weak, Frivolous, and Absurd Rationalizations
When alienated children are questioned about the reasons for their intense hostility toward the targeted parent, the explanations offered are not of the magnitude that typically would lead a child to reject a parent. These children may complain about the parent’s eating habits, food preparation, or appearance.

That could have been written about an autistic child. What seems very minor or inconsequential to a neurotypical person can be hugely magnified to an autistic one. Autistics also focus on the details, so they will notice lots of little things and it will look to others like they are being disproportionate. A disgruntled father, who is lashing out at the mother and looking for blame, will of course cite this as a sign of unreasonableness and insist the mother has turned the child against them over a period of time or raised the child wrongly.

5. Absence of Guilt About the Treatment of the Targeted Parent
Alienated children typically appear rude, ungrateful, spiteful, and cold toward the targeted parent, and they appear to be impervious to feelings of guilt about their harsh treatment. Gratitude for gifts, favors, or child support provided by the targeted parent is nonexistent. Children with parental alienation syndrome will try to get whatever they can from that parent, declaring that it is owed to them.

Lowered empathy coupled with anxiety and stress can override what may seem logical reactions. An autistic child does not mean to be rude, but can be focused on those aforementioned minor details and not remember to thank, can be blunt and may focus on the negatives because the way the autistic mind thinks, there is no need to mention the positives as they don’t need resolving. Literalness can also mean that an autistic child views the role of the parent as a job, so that they must do certain things to be performing it correctly – that doesn’t mean they don’t love their parent. Stress can give rise to negative comments which the child may not perceive as mean due to low empathy. Autistic children can release some stress through complaining.

8. Rejection of Extended Family
Finally, the hatred of the targeted parent spreads to his or her extended family. Not only is the targeted parent denigrated, despised, and avoided but so are his or her extended family. Formerly beloved grandparents, aunts, uncles, and cousins are suddenly and completely avoided and rejected.

An autistic child may feel stressed at spending time with extended family members, especially if they don’t see them regularly, because it upsets their routine. Additionally, if those family members also don’t understand autism or don’t accept the child has autism, they will not be bearing in mind the specific needs of the child when they spend time with them, which can make the child feel uncertain and stressed. They are used to spending time with a mother that intuits their needs and is used to their whims. It can be a terrifying place to be plonked with family members who don’t respond the same way. If an autistic child has low danger awareness and the extended family members do not supervise accordingly, that can be a sticking point between the mother and the relatives, based on a very valid concern. That does not mean the parent is being obstructive or turning the child against relatives and if the father or his relatives don’t understand autism, it’s all too easy to assume the worst about the mother when she is entirely innocent.

If the child resists being taken out alone by the father, he might make assumptions that the mother is poisoning the child’s mind against him. But there are all sorts of reasons why the autistic child may resist spending time alone with the father that are nothing to do with the mother.

Let’s say the dad is one of those who is a real joker, doesn’t take anything seriously and he does not understand autism at all. He insists that if the child wails in protest at his jokes which are taken literally, that the child is exaggerating. If they have what seem to him to be extreme reactions, they are not exaggerating, it is their real experience, because that is how an autistic person processes it. Because of this, he stresses the child and they will only go somewhere with him if the mother goes too – which isn’t possible in the situation, so the child refuses to go. The father blames the mother for this.

Autistic children also can have inappropriate laughter when they are stressed, it’s a form of release of stress, so superficially it appears to the dad that the child is having a great time. But that doesn’t necessarily mean they are enjoying a situation. The child may return home very upset and having masked their distress whilst spending time with dad, then throws themselves at the mother complaining of a long list of upsets and say they will not go anywhere with the father again.

If the parents end up in a court situation, especially where social services are involved, the mother may be wrongfully demonised, accused of emotional harm and parental alienation and in a worst case scenario custody could be given to the father. Imagine giving custody to a father who rejects their child’s condition and does not know how to provide for the child’s needs? Any ensuing behavioural problems in the child resulting from this scenario would likely also be blamed on the mother, it would be claimed she had caused emotional damage and the child needed therapy to recover. In fact, in this situation it would be the father who needed therapy to overcome his rejection of the child’s condition and his wrongful anger against the mother that will only interfere with father-child bonding and prevent him being a good father.

The saddest irony, is that the very thing the father in this situation is falsely accusing the mother of, is the very thing that he ends up causing.

It is high time the differences of autism families are understood by all those who are involved with families, to ensure there is no misrepresentation of autism, no wrongful blame and no unjust and harmful interventions, devastating lives.

The Hidden Difficulties of Autistic Children in School

Cortical Chauvinism

One of our readers is the blogger for Planet Autism. We seem to have very similar ideas and understandings of the condition and have enjoyed lengthy conversations behind the blogs. In this regard I asked her to write a piece for corticalchauvinism.com and she complied. Usually I introduce the writer with some biographical information, this time she preferred to remain anonymous.

invisible disability

People, as a whole, often judge by appearances. It’s human nature. If someone looks dirty and unkempt, they are clearly either homeless, mentally unwell, or an addict of some sort. The quiet guy with glasses is a geek, the rotund woman with children and groceries is motherly and the wildly behaving child must have ADHD or be poorly parented. But at a subconscious level, we know that we could be wrong, “never judge a book by it’s cover” as the saying goes.

Autism is a condition that affects every…

View original post 1,030 more words

The Aspie Adult – An Uncomfortable Reminder?

Ostrich This is a challenging post to write, but never one to shy away from speaking the truth, I decided to go ahead – and hope it would make people think – and not jump to defensiveness.  Buzzing around in my head, were questions such as “will it offend people?” and “will it alienate people?”  As an adult with Asperger’s, I have been only too aware of my differences over the years and the difficulties I have faced.  Granted, I was not diagnosed as a child, so I existed without any of the supports that are available today for autistic children and it could be called into question whether I would have fared better with those supports – but I suspect not.  I slipped under the radar – as do many Asperger’s females, people might have thought I was shy or a bit anxious, but no-one ever questioned me being “normal”.  The majority of high-functioning adults of today, were not diagnosed as children, many are still undiagnosed, but we exist.  Childhood supports or not, you can do nothing to undo the fact that you are autistic – and will always be autistic.

As an autistic adult using the virtual world of online forums, I have found that there is just as much (in fact probably more) risk of communication problems with others as there is in “real life”.  I wondered if I was singularly argumentative; didn’t realise that my directness was viewed as just plain rude by others and I questioned myself.  But this still didn’t explain it, bearing in mind that no matter how cross someone might make me online, I remain calm and collected and respond as professionally as possible.  At times this seemed to inflame people even more, because they were losing their cool and I wasn’t.  And what puzzled me even more, is that these were people already immersed in the world of autism, who were criticising ASC traits, or communication style, in an adult, yet their children had those same traits that they were asking society for understanding of.  Then I started reading of the experiences of others on the spectrum, who also faced problems on forums.  It struck a chord, when one person described themselves as being targeted and pushed out, by parents of autistic children, who they assumed would be grateful for a window into the mind of an autistic adult, to enable them to understand their own child better.

I have found this too and I am still trying to understand why.  Of course there are the social games that exist in NT society, those games we on the spectrum fail to understand; do not play and tend to either fall victim to – or are blindly oblivious to.  It stands to reason I guess, that those games will be the same on forums.  I have realised that parenting forums, seem to be about exchanging mutual stories and supporting one another, but that the expression of oneself as an Asperger’s adult, doesn’t always seem to be appreciated, especially if it involves the hard facts of life.  The NT parent often doesn’t seem to want to face, that no matter how much supporting/treating/attempting to “cure” their child, they will still be highly unlikely to have the same life as an NT.  They will remain autistic as an adult, even if they are existing in a mainstream way, they will have anxiety over things that NT’s won’t; their sensory difficulties will always play a part in their lives even if they manage to mask the impact of them for periods of time; they will always need a certain level of control; they will usually be exhausted by socialising and may avoid it; they will misunderstand others and be misunderstood by them; struggle in employment (around 75% are unemployed or only in part-time employment) and relationships – including romantic ones.  Even those with the so-called mildest form of autism will struggle and will be prone to mental health issues, due to trying so hard to fit in, but always having difficulties doing so, or it just being so plain exhausting.  This link gives some examples of how autistic adults struggle: http://www.iancommunity.org/cs/adults

Parents love their children and desperately want the best for them (I’m a parent too!), are trying to ensure they are able to “fit” into society, but this is part of what is driving the lack of acceptance, lack of understanding, lack of reasonable adjustments, for us ASC adults.  We don’t want to have to conform to an NT way of being, we want to be allowed to be us – and for that to be OK.  NTs wrote the rules for society, but they often don’t fit us, why can’t new rules be added, most of the existing ones are ridiculous anyway!  It’s why I challenge my autistic children’s schools to make those adjustments, to adapt things for them, because they are suffering in being forced to fit in and change is needed.  If you don’t believe me, ask yourself why places like Autscape and Autreat exist.

So I came to the realisation, that it is because an autistic adult is an unwanted reminder, an uncomfortable acknowledgment for some parents of autistic children, that their child will be like me one day.  An autistic adult, still having struggles.  For any parent, they want their child to have equality and be able to achieve.  Admitting that it might not happen, certainly not the way they hoped, could be a tough thing to face.  That all those supports that help their child get through school, and catch up with childhood milestones, might not bring the idealistic end result they hoped for.  There are parents veritably traumatised by their child’s autism diagnosis, they go through a kind of grief, depression and sadness.  So perhaps they plough all their efforts into obtaining those supports, hang on to the fact that it must be helping and their child will somehow “recover” enough to not seem autistic.  But what they don’t see, is that sometimes, this might enable an autistic child to grow up to “pass” as NT, to mask many of their difficulties, but inside, they are often still going through the same torments, difficulties, challenges and stress as they ever were.  An acquaintance told me once, that she had immersed her Asperger’s daughter in as many play-dates and sleep-overs as possible as a child.  She grew to be a past master at fitting in, but it did her absolutely no favours as she was suffering greatly inside as a young adult.  The pretence actually adds to the pressure and the stress we suffer.  It’s what I advocate as being ill-advised, the square peg into the round hole mentality.  I understand that it is doing a child a service by giving them speech and language therapy, potty training them and calming aggressive tendencies, but there are so many autistic traits that need to be accepted as just, OK.

It just saddens me, that NTs often want to play those games, to make themselves feel better.  So here are some questions for NTs to ask themselves:  Can’t we celebrate some of the positives of having autism?  Can’t we allow autistics just to… be?  Do we have to be shocked and angry when someone tells the honest truth without malice?  Do we have to shut people out because they don’t conform?  Do we have to expect them to be like “us”?  Do we have to continue to force these square pegs into round holes?  Because society is currently blinkered, does that mean it has to continue to be?  When we face an autistic adult, can we not stop turning our faces the other way?  Can we not stop criticising their traits as something to be ashamed of, or ganging up to ostracise them?  Is this what we want for our children?  When our children are bullied or ostracised in the playground, is this what we want to replicate as adults?  Or do we want to be like those playground bullies?

So next time you are online (or even in “real life”) and you don’t like an ASC adult challenging the status quo, delivering information in a factual way, or saying the things no-one else will say, maybe try opening your mind and realising that if we don’t do it, perhaps no-one else will.  Everyone has their purpose in life.  Some of the greatest minds that have existed are thought to have been autistic.  Sometimes, it’s the black sheep that makes the biggest mark.  And that person allowed to be themselves, could be your child.

Courts of Protection, MSBP/FII and Autism

human rights 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 dayIn 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 ofneurodevelopmental 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.

Autism and Deprivation of Liberty: The Shocking Tale of What the State is Doing

Deprivation of Liberty The Government created an Autism Act in 2009 for adults on the autistic spectrum.  Then it created an adults Autism Strategy (ironically entitled “Leading Fulfilling and Rewarding Lives”) in 2010, to remind authorities that there was an Autism Act and that they were meant to be adhering to it – just spelling it out sort of thing.  When people kept on reporting that things still weren’t being done as they were supposed to, despite the Act and the Strategy, the Government next created their “Think Autism” Strategy in 2014 just to remind them again (just how dense can these people be!).  What is all this achieving?  The Government can hold it’s hands up and say, “Look, we made a law for you, we did our bit, look how seriously we are taking this.”  …We all know what the term ‘lip service’ means though.

Some autistic adults are getting deflected when they seek referral for assessment via their GP, some are misdiagnosed in mental health services and pumped full of medication and then some that do get assessed for ASC are told “not enough traits for a diagnosis”.  You see, organisations love loopholes: loopholes let you avoid putting your hand in your pocket.  High-functioning adults don’t usually get any support even when they are diagnosed (and those that do, it’s not obtained without a fight).  Whereas lower-functioning autistic adults that may be unable to learn self-care, may be non-verbal, may have challenging behaviours and other difficulties, are much likelier to get interventions, but have something else to fear: the state taking over their lives totally.  The Autism Act is meant to protect and ensure the rights of all autistic adults, no matter their level of functioning – so that’s two big fails right there.  The Autism Strategy (backed up by statutory NHS NICE Guidelines) also states that all autistic adults must be provided with an ‘autism care pathway’.  This can include health professionals, housing, social care and any other discipline that needs to be involved.  After all, the Government created the Leading Fulfilling and Rewarding Lives Strategy specifically for autistic adults – and that means irrespective of their level of functioning.  How did we get to the options being pretty much, either zero support or total removal of control?  What does removal of control actually mean?  It means deprivation of liberty.  How is it in this day and age, in a supposedly cultured 21st century society, we are locking away autistic adults?

Misuse of the Mental Capacity Act 2005 (MCA) is prevalent, festering away under the surface of this supposedly enlightened society, with it’s legislation and laws.  There is a Code of Practice for the MCA, but like the Autism Act and the Autism Strategy, no-one is listening.  Who is policing this?  Nobody of course.  Corruption exists in the state, we all know that, it’s a very harsh fact of life – shouldn’t happen but it does.  But when vulnerable people are having their lives destroyed, people have to rise up against it.  The House of Lords has found that DoLs are being abused and the MCA is unfit for purpose, in March of this year.  Here are just a small handful of representative stories where autistic adults have been, or are due to be, deprived of their liberty:

It’s interesting that the following article states:

http://www.theguardian.com/society/2014/aug/05/councils-struggle-deprivation-liberty-tenfold-rise-mentally-vulnerable-patients

“Local authorities are struggling to cope with a tenfold increase in assessments of mentally vulnerable patients when hospitals or care homes want to deprive them of their liberty. A court ruling in March, increasing the number of patients protected under the Mental Capacity Act deprivation of liberty safeguards (DoLS), has seen assessments soar from just over 10,000 last year, to a predicted 94,000 this year, according to the Association of Directors of Social Services.”

Could this mean the motive is financial rather than the wellbeing of the person?  Of course, it’s not only autistic people this is happening to.  As in my previous blog post on state abuse, people with other invisible disabilities such as CFS/ME and connective tissue disorders such as Ehlers Danlos Syndrome are suffering this outcome too.  It’s almost undoubtedly happening to people with challenging behaviour, learning disabilities and mental health conditions which are being mismanaged by the state, resulting in difficulties for the individual which are more expeditious for the state to deal with that way.  Conditions that are not understood, or are fobbed off as ‘all in the mind’ or the fault of parents, are misrepresented as psychiatric conditions upon which the state will act as they see fit, often irrespective of evidence and facts to the contrary.  The system has a rotten core, or at the very least, is being manipulated for their own purposes by those who work within it.  But the system as it exists, closes down complaints, different regulatory organisations state “we do not investigate individual cases”, so where is recourse for people fighting for the rights of their loved ones?  If you are the parent of an autistic child who needs ongoing support and care, when that child reaches 18 you currently have no rights whatsoever.  The NAS will attest to this fact: http://www.autism.org.uk/living-with-autism/at-home/caring-and-planning-for-the-future/parents-of-adults-with-autism-your-rights.aspx

The trouble lies further with the secret courts, judges can be persuaded with cherry-picked and misrepresentative evidence, presented by local authorities.  Local authorities can pay psychiatrists to say what they need them to say.  I don’t pretend to know the whole shebang, but just what I have found out in the last few weeks, including the story of Isobel Moss (first link above) in the last couple of days, tells me there may well be a gravy train involved.  Anything can be got round by claiming that it is “not in the best interests” of the individual (the term ‘wide discretionary powers’ springs to mind here), incorrect professional opinions will go unchallenged and social services can manipulate and lie regarding parenting of the individual to make a case for the person to be deprived of their liberty.  This often means parental contact will be prevented.  So then who acts in the individual’s best interests or ensures that those interests are being upheld on a continued basis?  The parent has no say in whether their child is medicated and the health impact of side-effects of any medication unattended to, institutional abuse can be blamed on self-harm and that person is reduced to a shadow of what they could have been, with the right interventions and support (again, see Isobel Moss’s story).   Autism can bring challenging behaviour, but this doesn’t mean someone is mentally ill or lacking capacity.  Their behaviour could be due to illness, pain or sensory issues – and dare I say it, unhappiness in the environment the state has put them in.  So the state’s usual answer is to drug them up some more to make them compliant.  Quite apart from lives destroyed, deaths have occurred because of state interventions, so this cannot get any more serious:

When you know that vulnerable people are suffering this sort of abuse in care homes, you know how urgent it is that this injustice stops immediately: http://www.dailymail.co.uk/news/article-2793220/more-100-000-abused-carers-year-cases-led-46-deaths.html

The Government must do something about abuse of, and breaking of, those laws which are meant to protect people, not imprison them.  Secret courts need to come out of the shadows and provide transparency.  Gagging orders help no-one except to protect miscarriages of justice from being revealed, authorities that really are acting in the best interests of individuals will have nothing to hide.Gagging OrderAbusing individuals’ rights regarding medication, restraint, forcible removal, forced adoptions, deprivation of liberty, state abuse and the rights of those that care for and love them is wrong, inhumane and has no place in a civilized society.  Everyone has the right to a voice, and for some, that means having someone speak for them, but that someone must be someone that disregards what is the easiest option for others and does not revolve around financial incentives or keeping people in business for the sake of it.   There are people who are considered low-functioning autistic, and in the wrong hands they could have had a different outcome than they were lucky enough to have.  Read the story of Carly Fleischmann, who despite being non-verbal and having behavioural problems is an articulate and intelligent young autistic woman who surprised everyone.  See the video about Carly: http://www.youtube.com/watch?v=34xoYwLNpvw, imagine if she had been viewed as lacking capacity – which she could so easily have been, and been forcibly removed, medicated and deprived of her liberty?

If anyone is in this position with a loved one – whether it be forced adoption (whistleblower ex-SW on that link),  deprivation of liberty or any other form of state abuse, please contact Jan Loxley-Blount of Parents Protecting Children.  Jan along with several organisations and professionals, wrote to the Government (Right Hon David Cameron MP – Prime Minister, Right Hon Nick Clegg MP – Deputy Prime Minister, Right Hon Ed Miliband MP – Leader of HM Opposition, Right Hon Jeremy Hunt MP – Secretary of State for Health , Earl Howe – Parliamentary Under-Secretary of State, Department of Health) on 3rd September 2014, detailing the nature of the issue and calling for a meeting.  Let’s hope this is taken seriously.  You can also contact Isabelle Trowler the UK head SW for children or Lyn Romeo the UK head SW for adults, here: office.ofthechiefsocialworker@education.gsi.gov.ukDr Maggie Atkinson is the children’s commissioner for the UK and can be contacted here: info.request@childrenscommissioner.gsi.gov.uk.  If your loved one has had a deprivation of liberty order, the NAS has a page of information and there is a lot of helpful and relevant information regarding deprivation of liberty on the Alzheimer’s Society page which includes information on reviews of DOL decisions and helpful links.  You can obtain free legal advice about human rights here: http://lawworks.org.uk/?cID=10916  Don’t wait until it becomes too difficult to challenge decisions, usually there is a 12 month limit on complaints and appeals.  And remember…

Speak Out

The Injustice of State Abuse

1984 George Orwell 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”.

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

Stimming “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

10 Myths About Autism

myth busting  There is such a lot of ignorance about autism around, I blame the Government for not raising awareness with public service announcements, lack of realistic representations in the media and lack of training for those who need to have the awareness.

Here are some of those myths:

  1. Autistic people have no/severely impaired theory of mind – utter tosh, read this article: http://www.eurekalert.org/pub_releases/2006-02/uow-eqp021606.php;
  2. Autistic people have no empathy – there are several types of empathy: cognitive – being aware/accepting of, the feelings and views of others, affective – also known as sympathy, are two of those types and whilst we may have some impairment in cognitive empathy we most definitely have sympathy http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3494975/;
  3. Autistic people do not have feelings/show affection – we may show them differently at times, but I can assure you we most definitely have them and and whilst some people on the spectrum dislike hugs for sensory reasons, many of us are very huggable on our own terms;
  4. Autistic people do not love – we can love intensely, see the Intense World Theory of autism to see how we may actually experience the world more deeply than NTs https://medium.com/matter-archive/the-boy-whose-brain-could-unlock-autism-70c3d64ff221 and some spectrumites even have a person as the object of their special interest (we’re not talking stalkers here!):
  5. Autistic people do not get married or have families – where do you think all the autistic children are coming from! Many have autistic parents and it is largely a genetic/epigenetic condition, what is clear is that divorce rates can be high among ASC/NT marriages but then they are high in the general population too;
  6. Autistic people are violent – we are no more violent than anyone else, meltdowns are a state of overwhelmedness not aggression or violence and like everyone else, we are also a product of our upbringing, environment and life experiences, do not confuse us with sociopaths and psychopaths.  In fact, people on the spectrum are more likely to fall victim to violence than the average person.  (There can be co-morbid conditions such as ADHD which can make an autistic child especially, tending towards aggression but autism itself does not cause violent tendencies);
  7. Autistic people are mostly male – my belief is that the real ratio is actually 1:1. Because diagnostic criteria were researched and written on males, they do not take into account female presentation of the condition and therefore many females have failed to get diagnosed.   Slowly awareness is rising (although still not anywhere near good enough) and diagnoses of females are increasing, with clinics such as the UK Lorna Wing Centre currently estimating the ratio at 2.5:1 even though the official UK statistics are often quoted at their lowest, at 4:1;
  8. Autistic people all have learning disabilities/low IQ – even at the lowest functioning end of the spectrum, whilst the individual can appear to be locked into their own world and non-verbal, they can still be intelligent (look up Carly Fleischmann). To have an Asperger’s diagnosis you must have an IQ of >70 and they don’t call Asperger’s the geek syndrome for nothing – but that doesn’t mean we are all savants either, pro rata I would guess that people with AS/HFA number as overall more intelligent than the average population of NTs;
  9. Autistic people cannot hide their condition – at the higher functioning end, many of us (especially females) mask our condition – at great expense to ourselves. In fact, it is the higher-functioning autistics that end up with the most risk of anxiety and depression out of all autistic people, due to self-awareness and feeling forced to fit in with society and not getting any support for their condition;
  10. Autism is a mental illness – this is utterly false, it is a neurodevelopmental/neurobehavioural condition, in which the brain is wired slightly differently. It is not a mental illness and it’s a shame that assessment and diagnosis of the condition usually falls under the mental health services umbrella because this perpetuates the myth. In mental health services, people encounter psychiatrists and psychologists who may legally be qualified to assess and diagnose ASC, but are often not experienced or well-trained in it and therefore many adults end up wrongly in the mental health system, misdiagnosed and wrongly medicated, which sadly can in itself produce mental ill-health as a result.

So, Jeremy Hunt, MP and Secretary of State for Health – when are you going to start doing something about the lack of autism awareness?

CAMHS and autism: A story in pictures…

They say a picture speaks a thousand words, so this post will be telling a story in pictures…

THE CLAIM…

useless at job (CAMHS) 5useless at job (CAMHS) 6

 

AND THE REALITY…

useless at job (CAMHS)useless at job (CAMHS) 3useless at job (CAMHS) 2useless at job (CAMHS) 4waiting list incompetence incompetence 2CBToverpaid This is a story of thousands of children on the autistic spectrum, not getting their needs met, by a service that is unfit for purpose.  The NAS website has documents entitled “You Need To Know…” regarding evidence on this problem, as reported by thousands of parents UK-wide.

The UK Government is undertaking a Parliamentary Select Committee review on this national disgrace that is CAMHS: http://www.parliament.uk/business/committees/committees-a-z/commons-select/health-committee/inquiries/parliament-2010/cmh-2014/

Thought for the day (and  this one is directed at CAMHS):

Your Job

The “square peg into a round hole” mentality and it’s value to autistics

square peg round hole

There seems to be an overwhelming desire in all areas of life, to make people with autism fit into a neuro-typical (NT) way of being.  Apparently it’s better for us to be like NTs.  It applies to how we are socialised, educated, and how as adults, we work.  There is an all-pervading view, that autistic children must be exposed as much as possible, to the same levels of socialising as their NT peers, to make them like it and get used to it – and because “it’s good for them”.  NT parents don’t always realise, that doing this won’t necessarily help their child and can actually cause much unhappiness and discomfort.  Most parents are only trying to do what they believe is best, but an NT parent can in some cases struggle to be in tune with their child in the way they need.  Sometimes of course, they are working from bad advice from professionals too.  I read on an autism forum, how a parent (who is themselves on the spectrum) tried to expose their autistic daughter to as many sleepovers and socialising events as possible when she was younger and how once the daughter reached young adulthood, it hadn’t done her daughter any favours.  Because as an ASC female she had good masking skills which may have been further honed by her typical life experiences, to the point that she could pass as NT, but suffered internally because she still has the same autistic experience as a person on the spectrum who isn’t good at masking their condition – yet feels pressured to hide her true self.

Many autistic children, having experienced a full day at school, are exhausted and want quiet time, to be alone or to find their own ways to de-stress.  Insisting on putting that child in after school clubs, visiting friends/having friends or relatives round, or going to activities after school, or having sleepovers can overwhelm the child.  Don’t forget they will have been interacting and socialising all day at school, the very thing that is challenging and tiring for them, so it’s perfectly fine if they don’t want to do yet more.  Not all children on the spectrum act out their distress either, the passive autistic can internalise it and end up depressed and self-harming as a way of dealing with their internal state.  They will have endured sensory input all day and are being asked to endure yet more.  An autistic person’s ears can actually feel more sensitive by the evening, be less tolerant of sound, as if they have reached their input limit and need a rest.

Being high-functioning and having good masking skills (as I have posted on my blog before) is actually a curse in many ways.  Because not only does society pressure you to fit in and be “normal” but you pressure yourself too because your intelligence allows you to notice your differences and that level of self-awareness brings inhibitions.  It’s not something you want to do – to go round explaining to all and sundry “Actually I am autistic, so sorry if I don’t act the same way you do, or do anything you might consider odd, just so you know.” to let yourself off the hook to be yourself.  It’s a hard thing to deny your whole being, by acting in a certain way.

Some children and adults with ASC retreat to their room and are content to just sit on the computer for instance, or pursue a special interest alone.  Parents especially, can worry about this and think they must encourage the individual out of their room to participate more in the world.  But sometimes, that is enough for that individual at that time.  Quiet and solitary activities are often the autistic person’s way of sorting out the jumble in their head from their day, and strengthening themselves to carry on for the next one.   It’s valuable time for us.  Many of us live in a very internal world, and solitary activities can allow the space to think through events of the day and make sense of them.  Some spectrumites want to socialise and are upset at their difficulties it’s true, but not all.  It’s wise to ask the person what they want, and if they make it clear they are struggling, then offer support on their terms.  Don’t feel it’s OK to make them like NT peers and force them into things they just don’t want.  Some people on the spectrum are at risk of becoming isolated if they are not supported and encouraged, but that’s a different thing than making someone do things just because it’s your view of what is normal.

I was not diagnosed until I was an adult, I went to mainstream school and was made to do all the things my peers did.  It did not change my coping abilities or limits, whatsoever.  I still struggle in communication, I still often prefer to be indoors alone, I go out and do things on my own terms and usually only when I feel I’ve had enough days indoors, being quiet.  If I start trying to fit too many things in, or pressure myself to keep up with everyone else, I quickly become exhausted and need days to recover afterwards, so it’s counter-productive.

Teaching socialising skills is a positive thing, it is known that early interaction is very beneficial to autistic children, but that still doesn’t mean that the individual will have the desire to interact to the same level as NT peers.  Sometimes, you need to let someone just “be”.  Listen to the quiet voice of what they are telling you.  It’s better to help provide the skills the person needs, but also understand they have a choice and can be very instinctive about what their own needs are.  Meltdowns are a child’s (or adult’s) way of communicating that they are in a situation that is too much for them or they have reached their limits.  So do listen to those meltdowns.  Perhaps it’s not that you are doing the wrong things for that child, but that you are just going about them the wrong way.

Mainstream schools sadly, educate autistic children in a way that means making them comply as much as possible to NT styles.  It doesn’t necessarily work for autistic children.  It’s not about making children on the spectrum “fit for society”, it’s time adjustments were made in society to allow autistics to be accepted on their own terms.  We are at least 1% of the population and rising.  In the US autism rates are now 1 in 50  and the UK rates are likely higher than is officially recorded because the NHS is very slow to diagnose females and seems to have set the bar too high, as in many cases they are failing to diagnose people (citing “autistic traits but not enough for a diagnosis”).  So as such a large minority, ought society not be adapting to us?  They put wheelchair ramps and disabled toilets in for physically disabled people, induction loops for the deaf and crossings have textured paving for the blind and partially sighted.  What about us?  It’s discriminatory to believe that an invisible disability is less deserving of accommodations and the law says we are entitled to them in many instances – but we need it across the board.

I have just returned from taking my eldest daughter to a medical appointment.  I told them she was autistic and they could see she was anxious.  When she had to have x-rays she started asking a lot of questions, clearly needing reassurance – which I was giving her, but the radiologist started getting snappy and saying “well I’m not going to force anyone and I have someone else to see” instead of recognising that she just needed to answer a series of questions my daughter needed to ask, to be reassured.  Where was that small accommodation?  She clearly didn’t understand autism and expected my daughter to be like an NT child and attributed her need for reassurance to her not being prepared to undergo the x-rays – in which case she wouldn’t bother.

I want to be me.  I don’t want to be a cultivated and exhausting version of me that suits everyone else.  I don’t want to be something I’m not and fear judgment and derision by society for being different.  That’s what all autistic people want.  We don’t want to hide behind a mask.  We will always be square pegs, so start making some square holes for us because as you can see from the picture above, when you force a square peg into a round hole, we end up broken.

(And just imagine, if rates of autism keep growing, NTs could end up in the minority – and who will be asking for adjustments then?)

Thought for the day:

be-the-change

 

Autism Truth ~ a poem

Image  It’s a place of confusion, this world around
Not “getting” others, commonly found
Feeling misunderstood and not knowing why
Not seeing others eye-to-eye

Like an alien being, lost in their midst
Feeling communication stutter and twist
Telling the truth, such hostility abounds
They want lies and cover-ups to do the rounds

How strangely they judge from a mistaken stance
No capacity for any face value acceptance
You can’t be for real, or are mentally defective
Because they cannot see, your honest perspective

These games they play, like tricks and deceit
Is par for their course, is no big feat
What is it you want, or what can they get
Can’t they see, this is so wrong yet

In my mind I have a different place
I can retreat to when, I can’t take the pace
It’s a spiritual plane, evolved and knowing
Whilst all around this mad world is blowing

There is wrongness out there in all its forms
I will never, to their ways conform
There’s a purpose to this, a meaning to come
One day all the wrongness will be undone

Autism Unawareness

Lesser_hedgehog_tenrec_Echinops_telfairi 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:

the-greater-the-power-the-more-dangerous-the 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

Masks

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.”

Assume

Another autism poem…

illegal aliens

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

Anomalous Experience in ASC Communication…A Musing

MiscommunicationCommunication 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.

Cartoon miscommunicationDon’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.

Texting miscommunicationSo 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