“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.

Judgmental Looks, Tuts and Glares

judging  As any parent of an autistic child will tell you, people can be really judgmental.  Autistic children can have meltdowns wherever you are, in shops, parks, family outings… you name it.  When the child is very young, you may get an understanding smile from another parent, who views it as an ordinary toddler tantrum, but as the autistic child gets bigger, the looks become more and more disapproving.

You can almost hear their thoughts “Can’t s/he control their kid!”, “What a rubbish parent!”, “That child needs some discipline!”.

Some people are obnoxious enough to actually give filthy looks or make nasty or sarcastic comments, even to your face (occasionally even to the autistic child’s face).  Some, if they realise your child has a condition, can even make discriminatory comments about not bringing your child out in public.

How easy it is for those people, to have their perfect children, who don’t panic and start to meltdown because the shop is too busy or too hot, or the hand-dryers in the toilets are too noisy, or because the shop assistant spoke to them.  How easy it is for them to grab a bag and go out with kids in tow, without having to first identify if their child is having a good day or a bad day, think through whether the destination is going to be busier on that day, or whether it’s too hot and their temperature-sensitive child is going to become overwhelmed before half an hour has passed.  Or even whether as a parent, you possess the wherewithal that day, to deal with it, if anything like that does happen.

Autism parents don’t expect everyone to automatically know about autism, or what effects autism has on the person with it.  But we do expect that when they see a child who isn’t a toddler, having what looks like a toddler tantrum, they realise there is clearly something up that can’t be helped.  When they see that child repetitively and apparently aggressively questioning their parent, or loudly demanding x, y, z, they should think twice before they look child and parent up and down like dirt on their shoe.  (Yes, middle-aged lady in Asda, that was you, at your age I would have expected more compassion and understanding).  Because that child was in a panic they couldn’t control.

They should realise, that when they see a parent with such a big child behaving that way, the reason the parent is not telling their child off and is staying oddly calm, what looks to them like a passive ‘doesn’t-give-a-damn’ parent, is in fact a parent who knows their child has reached the point of being overwhelmed and the last thing they need is their parent shouting at them to behave.  That if the parent deals with it the wrong way, it could push that big child into aggression through sheer blind panic, that could affect members of the public around.  Is that what they would prefer?

And when their own perfect children all stop to stare open-mouthed, it would be nice if they could tell them not to stare with open mouths.  To lead them away and explain that the child cannot help it and it can make them even more overwhelmed if they realise everyone is staring.  And actually, yes, it is also rude.  And if you could also actually supervise your children, so they don’t gather in a circle round the autistic child, that would be appreciated too.  A little compassion goes a long way as they say.  While you have the luxury of not even watching your children, so may not even be aware they are treating an autistic child like a zoo exhibit, there is an autism parent who never gets a minute off, who has to supervise their child the whole time to keep them safe and ensure they are keeping their equilibrium.

While members of the public having perfect children, can go on holiday without a second thought, leaving them rested and full of beans, so that they have the energy to take such an interest in the lives of others and generate negative looks and comments, there are autism families who don’t get to take holidays at all.  Or if they do, they have to restrict themselves to certain types of holidays (perhaps nowhere involving an airplane, or no hotel – only detached chalets to avoid inflicting meltdowns on those in adjacent rooms, or no coach journeys) meaning potentially higher costs, less holidays overall or no opportunities to see the world and have a relaxing beach holiday.  Some autism families are unable to leave their children with friends or family because of their child’s needs.  So they can never have a ‘me time’ break or holiday.

So some sympathy, even some admiration would be welcome.  But when autism parents go out with their children, what they don’t need is judgmental looks, tuts and glares, nor sarcasm or nastiness.  Most autism parents are not receiving the support they should receive from health or social care, they are unpaid heroes doing their best to raise their children to achieve whatever is possible for them to achieve.  They are battered by having had to fight the system every step of the way for their child’s basic rights and the difficulties in being included in society.

So take a leaf out of this man’s book we don’t expect you to pay our tab, but this sentiment is what mattered most to the autism mum when her son had a meltdown in the restaurant:

God Bless Note

You may just restore an autism parent’s faith in humanity and feel better about yourself as well.

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.