“Art of Autism” Blogger Awards 2017

shy-grinning-emoticonIf anyone has ever appreciated any of my blog posts please consider voting for me here: http://the-art-of-autism.com/vote-for-your-favorite-female-autistic-blogger-for-2017/. I’ve never been nominated for a bloggers award before!

I never really check blog follows statistics, but I know there are a few of you out there.  So if any of my posts have struck a chord with you, given you a helpful insight, been a topic for debate, or anything at all – I would appreciate your vote.

Some of my most popular blog posts have been:

But there is a wide variety on the blog, some of which have been topics I have never seen discussed elsewhere.

I’m normally very behind-the-scenes and ‘hide my light under a bushel’ and therefore my blog is (as far as I am aware), not one of the high profile ones, so I thought I’d break the habit and suggest nominating and voting for me as I’m currently in need of a boost!  It will hopefully also spread awareness of autistic issues from perspectives that may not be found elsewhere and if that helps even one person, it will be worth your vote.

Many thanks!

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“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!

“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.

“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

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!

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…

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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

“Not Enough Traits for a Diagnosis”

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

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

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

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

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

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

Thought for the day:

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

~ Deepak Chopra

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

 

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

Lost in Translation…Tales of The Language and Expression of Autism as an Alien Concept

ImageThe Rorschach inkblot test is a great illustrator of the point here.  A random inkblot can be interpreted in different ways by different people, and based on what they see, a psychologist or psychiatrist can use that information towards diagnosing psychopathology.

So there are two points – the first is, that the same thing can be interpreted in different ways by different people, and the second, is that depending on a person’s life experience, training (or lack thereof), environment or upbringing and all sorts of other reasons, they can have a bias to see things a particular way.  Hence the making of assumptions, often incorrect in the case of the autistic people they are assuming about.

I have my own experiences both as an adult with Asperger’s and as a parent of autistic children, of miscommunication and misunderstanding with neurotypical people.  And it cuts both ways.

I feel sure that many parents of autistic children out there, can give testimony to their child saying, (or in the throes of anxiety or meltdown) screaming out, things that would be so likely to be misinterpreted by others, particularly others who don’t know the context or the child’s condition.  Only today, I also read of a worried mother whose autistic child had gone into school and made false accusations against her father of getting her up in the middle of the night to “beat her up” and then laughingly told the parents later on “I lied to see if you get taken away” and the mother is heartbroken.  Clearly the issues here in this particular child, and no doubt others, are low emotional maturity/awareness, low empathy, normal-high intellect and communication deficits – which can be a perfect storm for things getting either taken the wrong way or the child not realising the impact of their words or actions because of autism.  My own younger child (aged 9) has said awful things to me, in a calm and cool voice, because I won a game of snakes and ladders against her.  Later on, she will say she didn’t mean it, but that she was angry.  You would never have known she was angry by the way she said it and the delay after the game finished, before she said it.  It was meant to hurt me, because she was angry, but she had also clearly ruminated about losing the game and thought about what she could say to hurt me.

Once, we undertook a family outing to a play centre, my youngest child got stressed inside the soft play area and had a meltdown, I tried my best to calm her down but she couldn’t stop (it’s a runaway train a lot of the time) and in the end I had to take her by the hand and outside to the car.  All the toddlers in the centre were staring open-mouthed, at this older child screaming, like one of them having a tantrum – times ten.  Whilst taking her across the car park, she was screaming “Help!  You’re taking me away!” and I could see people looking wondering whether I was abducting someone else’s child.

There have been many times the children have both yelled things out at home which I cringe at, because I am acutely aware that to a neighbour through the walls, the meaning will sound totally other than what it actually is.  And bearing in mind that many autistic children are hypersensitive and hyper-reactive to small things, the frequency of screams and tears and yelling of misconstruable things, can be a big concern for a family.

Because autistic children often say things in a factual way, without explaining further, this is another cause for other people to misunderstand and jump to conclusions without looking deeper or enquiring further.  Being misunderstood can have all sorts of consequences, the child may not have the insight to realise they are being misunderstood, or what the implications are, and the parents may be the only people who really know the child and their unique way of expressing themselves and what they actually mean.  You cannot raise a child from a baby without picking up what they mean in the way they express themselves, parents of NT children “learn” their children, but parents of autistic children take this to a whole other level.  You know how a mum is often the only person to understand the particular babble of their toddler, which everyone else finds unintelligible, or how the spouse of a motor neurone disease sufferer will know by a twitch or eye movement exactly what they mean?  That times a hundred, and if the parent is on the spectrum themselves, perhaps that times a thousand.

Then there is the issue of atypical presentation of emotions.  Many parents will know of the ‘different behaviour between school and home‘ scenario – sadly even clinicians aren’t fully aware of this and many other professionals cannot grasp it and refuse to accept it is even possible.  This can lead to schools denying a child is having difficulties coping and professionals in turn, accusing parents of either exaggerating or even making up their child’s difficulties.  This can of course have the potentially devastating effect of the child not receiving the support they need, which in turn affects the child’s mental health and services refusing to accept the problem can be a big strain on a family.  I still shudder when I recall recently reading in the comments below a media article on bullying (something many ASC children suffer from) a mother describe how CAMHS’ failure to support her bullied autistic child, led to their suicide.  Rates of bullying of autistic children can be as high as 63% (possibly higher as those are only the reported cases).  If a child is bullied and the school doesn’t address the problem or accept that it even exists, because the child reports it with flat affect so it is not taken seriously, then this shows professionals are not understanding the unique nature of autistic traits and difficulties.

Autistic children may also display “inappropriate” emotions which an uneducated person would not understand.  For instance, laughing whilst feeling distressed, or want to extricate themselves from a situation or environment.  My husband does not see, that if he teases the children and they are laughing, that this might hide the fact that they are not enjoying it – I can see that they might be close to tears and the laughter disguises how they are really feeling.  Or when he has taken them out, to him they can appear to be fine and enjoying the outing, but the moment they return home either one of them (and sometimes both) can throw themselves at me loudly complaining and almost crying about how they didn’t enjoy it.  And it’s complicated by alexithymia causing difficulty understanding and expressing their emotions.  So when a parent, often the mother, can see what is happening with their child, they can have immense difficulty getting professionals and services to recognise it.  They can be accused of being neurotic, anxious, over-protective, controlling and even more serious things, when they try to seek help for their child and explain the difficulties.  Often also, an autistic child will release their distress and feelings with the person and in the place, they feel safest to do so – at home with the mother.  They are masking it in front of others and this is why the training and awareness of services and professionals is essential, as is professionals treating parents with respect and listening to them.

Life is hard enough with autism, or raising autistic children, we don’t need misjudging been thrown on top of that.

I will finish by requoting something I quoted in one of my other posts:

http://www.larry-arnold.net/Autonomy/index.php/autonomy/article/view/9/21

“They judge me on the bit they can see and what they are able to see sadly will itself be limited by their own conditioning…” (Lyte)