“Autism Assessments – Lay Parents vs Clinicians!”

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

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

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

novice-expert

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

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

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

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

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

expert-knowledge

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

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

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

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“Anosognosia and Autism – A Real Concern”

anosognosia_lobe_capture2
Image courtesy of http://www.treatmentadvocacycenter.org

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

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

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

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

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

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

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

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

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

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

The “It’s Just a Difference” Delusion

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

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

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

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

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

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

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

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

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

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

“Fluffy” Forums Exclude Autistics

Fluffy dog that can't see The internet is home to a vast array of forums, forums that cater for every type of group possible.  There are support groups relating to particular conditions, whether that be for the individuals with the condition, or parents of children with it.  Autism is no exception.  Sometimes, autistics also have other conditions and will frequent the associated forums.  (We do get about online!)

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

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

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

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

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

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

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

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

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

Miscommunication

The Delayed Autistic Brain!

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

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

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

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

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

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

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

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


http://www.brainbalancecenters.com/wp-content/uploads/2012/07/autistic_spectrum_disorders_as_functional_disconnection_syndrome_by_melillo_and_leisman_may_091.pdf

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

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

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

Sensory Processing in Autism: A Review of Neurophysiologic Findings

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

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

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

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

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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Autism and Education: Does Inclusion Work?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Connective Tissue Disorders & Their Correlation to Autism

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

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

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

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

Here is another article on the effect of EDS on the brain (which also refers to autism, along with proprioception issues and sensory difficulties):
3) “Brain structure and joint hypermobility: relevance to the expression of psychiatric symptoms” http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3365276/
Here is an article which discusses the “Underdiagnosed” condition of EDS :
4) (see 5.5 Psychiatric Features) “Ehlers-Danlos Syndrome, Hypermobility Type: An Underdiagnosed Hereditary Connective Tissue Disorder with Mucocutaneous, Articular, and Systemic Manifestations” http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3512326/
I have read a lot of anecdotal evidence about families with ASC and EDS – isn’t it time science and medicine properly joined up the dots?  I mean even in the article above (3), they state “Differences in the structural integrity of temporal and parietal cortices may underlie wider behavioural phenotypical expression of hypermobility: abnormalities in superior temporal cortex are also seen in autism.11 so they aren’t actually making a strong enough link, they seem to think the two conditions share the same brain changes but not that they are intertwined in some way and that perhaps EDS is even causative of ASC.  So basically there is an elephant in the room…joining the dots elephant…and no-one is bothering to properly join the dots.

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

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

~ Celestine Chua

Edited 28.5.16 to add:

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

Pinterest EDS and ASD genes

10 Myths About Autism

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

Here are some of those myths:

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

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

The Asperger’s brain in colour

autistic brain 2Most people have heard of an EEG (ElectroEncephaloGraphy) which is a brain scan, using electrodes attached to the scalp, that measures electrical activity in the brain.  I had one of those as a child (following epileptic episodes), and it found abnormalities, although then, autism awareness was zero and no doubt the research on EEG differences in autistic children had not been done, so no correlation was made which may have led to diagnosis.

Now, there exists the Carlos Fandango of brain scans (herald trumpets) the qEEG (quantitative EEG) which is brain mapping that identifies not only the activity (which brain waves and where) but where connections are lacking or overpopulated, through which the brain sends information.

I recently had a qEEG done, and some of the pictures of my brain patterns can be seen here, the first is activity and the second is connections:

http://i.imgur.com/fDNeTcQ.png

http://i.imgur.com/mOeT6dH.png

The colours identify where you have problematic areas, and they are assessed against a database of normative data.  It’s quite strange seeing on paper, in full colour, where your brain is different.

Before I went for the qEEG, I always said that it feels like parts of my brain are stuck, can’t process certain things, and sure enough it showed up.  I was pretty glad it did, it’s a bit like going to the doctor with a set of weird symptoms and them saying they can’t find anything wrong with you otherwise!

Research is moving forward with brain scans and it shouldn’t be too long before diagnostic brain scans could be used:

http://www.theguardian.com/science/2010/aug/10/autism-brain-scan