Polly's pages (aka 'Donna Williams')

Ever the arty Autie

The changing landscape of autism diagnosis


Suspense by Donna Williams In the 60s autistic was the adjective to describe children with Kanner’s Syndrome which was then a form of ‘Infantile Psychosis’, psychotic children. As such it was psychiatrists and psychoanalysts who diagnosed autism. These ‘autistic’ children were rare, only 1 in 10,000 children were diagnosed with ‘infantile psychosis’ (the autism of its day).

In the 70s the diagnosticians were a combination of psychiatrists and clinical and behavioral psychologists. Autistic children were deemed attachment disordered, emotionally and behaviorally disturbed, and were commonly in schools for such children. Special schools were for those deemed to have significant learning disabilities and usually a diagnosis of ‘mental retardation’.

In the 80s to early 90s those with autism were being clearly differentiated from those with only emotional/behavioral disturbance and from those with only learning disabilities and mental retardation. So now one could be autistic and emotionally/behaviorally disturbed and/or autistic and learning disabled or ‘mentally retarded’. Autism was now seen as a cognitive disorder, a collection of cognitive strengths and weaknesses, alongside deficits in social skills, communication, imagination and play. Asperger’s work was not yet translated into English and Asperger’s Syndrome was not yet a modern diagnosis. The incidence of autism in 1991 was still only 4 in 10,000 with 70% considered to be ‘severely mentally retarded’. The diagnosticians of this time became predominantly clinical, behavioural, developmental and educational psychologists.

Asperger’s became widely diagnosed since the mid 1990s and by the DSM5 in 2013 it became co-opted into a general category of Autism Spectrum Disorder (ASD). But what had also happened through the the 00s was that co-occurring mood, anxiety, compulsive disorders were identified and eventually understood as part of the person’s autism ‘fruit salad’ and progressively gut, immune, metabolic disorders became seen as commonly co-occurring in autism. Pediatricians were used to acutely ill children, but not so used to supporting chronically but sub-clinically ill children. Whilst they could deal with anaphalaxis, testing for celiac, immune deficiencies, autoimmune disorders or inflammatory markers, or IgE allergies, they were commonly reluctant to test children who were not obviously ill. Furthermore, they tended to have little specialisation in food intolerances (ie non celiac gluten intolerance, casein intolerance, salicylate intolerance etc), idiopathic food allergies, dietetics and without strong peer reviewed medical literature to have a reason to refer children to immunologists, neurologists, gastroenterologists or dieticians, they commonly failed to support families exploring their child’s health anomalies or writing health issues off as ‘common in these autistic kids’ yet then failing to offer treatment. High cost, unfunded, often not even medically qualified practitioners sprung up to fill the gap: chelation, HBOT, mega supplementation. And the mainstream medical world sat on the sidelines waiting (rightly) for the studies to rubber stamp what they should or could do.

By 2014 a plethora of studies began showing that up to 50 different gene variants contribute to different autism related issues and that any person with autism could have different combinations of these, making us a strikingly diverse group with very contrasting collections of strengths and challenges.

Specialists became even more specialised. Gastroenterologists had begun to look more at neurology, neurologists had begun to look more at immunology and what was going on in the gut. And pediatricians and GPs were updated their knowledge not just about recognising autism but not had the studies to empower them with the confidence and obligation to explore any reported chronic but subclinical indications of health disorders underpinning or running alongside a child’s developmental disabilities.

The autism world changed again. Occupational Therapists who had been previously side lined were now widely sought for apraxia/dyspraxia, agnosias, aphasias, and a range of physical, executive, social and communication related functioning challenges. Mental Health Social Workers could work with linking people to resources, reconnecting them to their communities, working with family dynamics, self management and occupational skills. GPs and pediatricians began to support referals to specialists: behavioural opthamologists, audiologists, immunologists, neurologists, gastroenterologists, occupational therapists, mental health social workers and the like. It was no longer the prized domain for the solo psychologist.

So we’re now in the 10s. Its a time about FUNCTIONING and its the medical era. And this time it will not mean chelation, HBOT, mega supplementation. Those happened because funded qualified doctors were too narrow, too dismissive, fobbing autism off as ‘not physical’. Now the doctors are becoming referral specialists and autism is landing in the hands of qualified neuros and gastroenterologists and immunologists and pediatricians who are getting up to speed not with their own IDEAS but with the STUDIES and saying, wow, so there is actually medical issues here we can help address IN THOSE WITH THOSE ISSUES.

We now have NIDS, PANDAS, DAMP, Preemie Syndrome, MBI, Gene Deletion Syndromes, and who knows what an ‘autism’ diagnosis will look like by 2020. Either we accept there is medical and non medical autism, or we decide that if its medical it was ‘not really autism’ and as we diagnose those with a new range of autistic looking medical syndromes then whatever is left on the shelf will still be autism..

In the online world a different progression was happening. From the first snail mail pen pals lists of the early 1990s, since the mid 90s people diagnosed on the autism spectrum were now finding each other online. In 1991 when Nobody Nowhere became an international bestseller autism rates were 4 in 10,000. This book brought adults out of the woodwork seeking diagnosis in countries all around the world and by 1995 when Somebody Somewhere became my second international bestseller autism rates were now doubled: 1 in 1000 people.

Then as Temple Grandin’s first international bestseller, Thinking In Pictures, came out the same year, in 1995, I was bowing out of publicity (I was offered to be in Time Magazine in 1995 and turned the opportunity down) just as Temple was relishing her new publicity opportunities. Ever author has their own message. Temple’s was to ultimately proclaim autism as a source of pride, a positive evolutionary change, the source of all invention and genius without which non autistic society would never have advanced, drew on examples of Einstein and the like (who were not diagnosed on the spectrum) as ‘Autistics’, and proclaimed her autism as the inextricable source of her selfhood.

Swathes of people identified with being on the autism spectrum, commonly seeing themselves as having no disability, proclaiming their ‘autism’ as a fiercely valued essential component of their selfhood. Some gave up speech (voluntary elective mutism, as opposed to involuntary selective mutism), proclaiming verbal speech as ‘not natural to them’, identified themselves as non verbal and returned to typed speech only. Many identified with Temple’s stereotype of being ‘visual thinkers’ (in fact it is now known people with autism have a range of learning styles and those with visual perceptual disorders are usually not visual thinkers at all). All believed in ‘autistic culture’. Many believed the only reason a person with autism would develop mental health issues is because of maltreatment and inequality within a predominantly non autistic society and so required understanding, acceptance, advocacy rather than treatment. Many also believed that the vast number of new studies associated with health disorders in people with autism was part of pathologising autism and trying to eradicate it, and with it their valued identity and culture. The medicalisation of autism threatened them, frightened them. Their social networks, their self esteem, their ways of life, sometimes their disability benefits (for those many felt they have no disability, they still felt ‘disabled by non autistic society’), their investment of being the ‘new evolution’, their ’cause’, was challenged by medicalisation.

One problem with people getting highly invested in the diagnosis of autism is that the diagnosis is not static, its dynamic. If we did the same in the 60s we’d all be saying we were proud to have infantile psychosis. If we did the same in the 70s-80s we’d be saying we were proud to have severe mental retardation. The only reason we developed pride specifically in being autistic since mid 1990s is that it became associated with genius. In reality, though people with autism DO have a range of abilities and talents, the ‘genius’ thing applies to around 1-10% of folks diagnosed on the spectrum. The rest are a mixed bag and uneven abilities is usually the norm and part of the diagnosis. So the pride of the 90s-00s fitted that era, but fact is we did wake up from the dream and realise we did all have some abilities but we were not all Temple Grandin, not all Einstein and that Einstein was probably only as autistic as he was non autistic for we now know that there is some degree of ‘aut-ism’ (the adjective) in us all.

What if a vast range of medical conditions present like autism &/or ADHD but perhaps they are not? What might autism diagnosis look like by 2020? Will the term autism be reserved only for those who fit no other recognised medical condition/s? And if so what will be the numbers? Will we be back to 4 in 10,000? Will the pride movement be able to embrace those with recognised health disorders as fellow ‘autistics’? Or pick and choose, keeping those with genetic conditions but casting out all those who acquired their issues after viruses and the like?

And what will they do with all the ‘autism malatos’, those of us, like me, who had genetic conditions that predisposed us to being unable to recover from the cascade of damage triggered by viruses, a foot on two camps so to speak… will we become ‘unmentionable’, edited off their Wikipedia autistic pride pages as ‘not representative’?

The field is changing, and though those in the pride movement are making autism its own, shaping it in their own image and creating their own, new definitions of it, the fact is that none of us own autism. We can’t box it, put it on a leash, order it to sit and stay. The autism field is dynamic and it will continue to change.

If you meet a blond you can say, so what kind of blond are you and how do you experience that… and if you meet an autie… you can do the same.

Donna Williams, BA Hons, Dip Ed.
Author, artist, singer-songwriter, screenwriter.
Autism consultant and public speaker.

I acknowledge Aboriginal and Torres Strait Islander people as the Traditional Owners of this country throughout Australia, and their connection to land and community.

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