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

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