“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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“Male Ego and Autistic Progeny”

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

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

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

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

Media articles and blog posts too:

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

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

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

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

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

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

Mother Research

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

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

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

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

Ostrich

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

 

“Anosognosia and Autism – A Real Concern”

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

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

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

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

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

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

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

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

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

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

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

“The A Word” Has Missed a Trick

angry girl 2Letter Aangry girl

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

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

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

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

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

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

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

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

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

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

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

The A Word comment by psychologist

The Injustice of State Abuse

1984 George Orwell The increasing paranoia and accusations against parents, of “emotional abuse” and even “potential for future emotional abuse” has taken hold of the nation.  No parent alive in the UK today, is safe from such accusations.  If you are a parent of special needs or disabled children, your risk increases.  If your child (or you as the parent) have what is termed as an invisible disability (such as autism), the risk shoots higher still.  Ignorance of the presentation of some conditions that are classed as invisible disability, means that behaviours and family dynamics can be misinterpreted.  Unwillingness to admit they got it wrong, causes professionals to dig their heels in further and continue on the path they have chosen.  Dr Nigel Speight a doctor specialising in ME, gave an interview with a Dutch presenter on his own experience of supporting families falsely accused this way.  The Government is aware of this issue, but is protecting professionals who commit such state abuse, there is no accountability for these professionals and the hypocrisy that they are falsely accusing parents, yet causing the very thing they accuse the parents of, cannot go unnoticed or unchallenged.

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

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

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

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

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

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

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

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

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

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

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

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

“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

10 Myths About Autism

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

Here are some of those myths:

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

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

CAMHS and autism: A story in pictures…

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

THE CLAIM…

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

 

AND THE REALITY…

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

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

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

Your Job

Professionals Not Understanding Autistic Presentations – Masking

Masks

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

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

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

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

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

1.2.7 Do not rule out autism because of:

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

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

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

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

“Diagnostic Criteria for 299.00 Autism Spectrum Disorder

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

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

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

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

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

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

“Abstract

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

Assume

When Services Go Bad…Autism Misunderstood

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

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

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

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

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

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

~ Jenny McCarthy

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

A poem I wrote once about being on the spectrum…and early diagnosis

NAS poster(poster I designed, displayed at NAS Autism & Participation Conference 28th January 2014)

Autism from the inside view

When you see life through your own set of glasses
When your soul exists worlds apart
Your senses too keen, fragile and shattered
Confusion, is merely the start

***

The world assaults you from all sides
Why are others not also the same
Why are you different, why do you not fit
Why is it you, that others blame

***

You feel like a snail needing it’s shell
You feel like everything’s wrong
People don’t make sense to you
So you sing the saddest song

***

Your anger may rise, your fear overwhelm
Your tears fall unrecognised
Where is the world that for you would be home
Where is that place, that yourself would be prized

***

Hiding away becomes easy, when understanding is none
Encounters with others a trial
Your words feel like those from a foreign shore
And you feel from others such bile

***

You want order and control in this world of chaos
You want others to accept and be aware
But we are the minority in this place
And the majority don’t seem to care

OK, it speaks of the more negative outlook I know, it’s not all doom and gloom, but this is the reality for many people on the spectrum, and this is why it’s so important that early identification and diagnosis is provided for people, because as the following link shows, outcomes for adults who receive late diagnoses are poor: http://www.iancommunity.org/cs/articles/very_late_diagnosis_of_asperger_syndrome and http://www.shu.ac.uk/faculties/ds/education/theautismcentre/docs/ASPECT%20Consultancy%20report.pdf.