A story on the BBC website caught my eye the other day about the boy who was the first child to be diagnosed with autism. Donald Grey Triplett, was diagnosed with autism by Leo Kanner, a psychiatrist in Baltimore, USA in 1938. At first, it was called "infantile autism".
Although the movie "Rain Man" was not based on Donald, the article describes him as not too dissimilar to Dustin Hoffman's title character of Ray. Donald, from Mississippi, is now the subject of a new book, In a Different Key: The Story of Autism by John Donvan and Caren Zucker, who also penned the BBC article.
While "Rain Man" brought autism to the public eye for so many, it also remains as the image of what autism looks like to those who don't know any different, rather than the spectrum condition it is. For a short time before his diagnosis, Donald, like Rain Man, Ray, also lived in an institution:
His parents tried to break through to him, but got nowhere. Donald was not interested in the other children they brought to play with him, and he did not look up when a fully-costumed Santa Claus was brought to surprise him. And yet, they knew he was listening, and intelligent. Two-and-a-half years old at Christmas time, he sang back carols he had heard his mother sing only once, while performing with perfect pitch. His phenomenal memory let him recall the order of a set of beads his father had randomly laced on to a string.
But his intellectual gifts did not save him from being put in an institution. It was the doctors' order. It was always that way, in that era, for children who strayed as far from "normal" as Donald did. The routine prescription for parents was to try to forget the child, and move forward with their lives. In mid-1937, Beamon and Mary complied with the order. Donald, three years old, was sent away. But they did not forget him. They visited monthly, probably debating each time they began the long drive home to Forest whether they should just take him back with them after one of these visits. Excerpt from BBC article by John Donvan and Carly Zucker
And take him back they did and soon, on to that fateful appointment with Dr Kanner, who wrote the first medical paper describing autism with Donald known as “Case 1 … Donald T,”.
Since then, the multi-billion pound autism "industry" has developed without any involvement from Donald. It ranges from specialist autism practitioners, medical careers in paediatrics and genetics, to therapies (some highly controversial); from specialist education settings and care providers to weighty catalogues and exhibitions full of every product you can imagine. Not to mention the lawyers and politicians involved in some way or another too. Most of these developments - especially the autism-focused charities both large and small - have been beneficial, even life-changing in some cases, to families of children with ASD.
Plus ça change...
But in spite of all the shiny products and expensive education facilities available, at the coalface of caring, our homes, there is still mainly just hard slog.
Then, as now, it is down to the parent or carer to ensure that their child with autism receives a diagnosis and access to appropriate treatment and education. If Donald's parents hadn't stood as his determined advocates, where would he be? If they hadn't refused to give up on their child or pursued a diagnosis, Donald would have been condemned to life in an institution without any specialist help. If his mother hadn't worked relentlessly to help him learn life skills and some language, he wouldn't have been able to attend high school, as he did. There, his classmates accepted him for who he was and he grew up within a small community who protected him. No need for "inclusion strategies." He was just one of them.
Of course, that school probably didn't have targets and tables and ambitious management who don't want either of those things messed up by a child with additional needs (Not to say there weren't other problems back then: Luckily for Donald in 1930s Mississippi, his skin was white.)
The point is, that still today in the 21st Century, it often isn't autism that disables and excludes people; society does that for them. When a parent isn't being judged by a tutting stranger as her child has a meltdown, they are losing valuable hours of available sleep trying to understand the SEND, health and social care systems. And then they must summon the energy to navigate it on their child's behalf so they get the right diagnosis and education. Some "professionals" see parents like these - like me and you, dear parent reader - as troublemakers, because we don't just do as we're told and take what we're given. Other, more enlightened practitioners (bless every single one of them), understand that we are our child's best hope.
I hope this second group of forward-thinking teachers, doctors, health and care practitioners and case workers are a fast-growing breed; that their good practice and their understanding that the system is stacked against us will permeate through the corridors of schools, local authorities and medical settings. I hope that these good souls will see off those old-schoolers who cling to the archaic system that you should just shut-up be grateful to get anything.
Because we're tired of the battle for diagnosis and support. We're really disgusted that after all the time and money spent on reforming SEND, new parents coming into the system still have to become conversant in education and social care law so their child can even get an assessment. Parent carers don't have time to become experts in the numerous and varied ways that disability entitlements and access criteria operate, but if they don't the chances are their child will lose out.
We just want everyone who is supposed to help us, to take care of their jobs as well as we take care of our kids. We want our voices to be heard and our views to be respected. We don't want professionals to meet to discuss our child or our parenting, or both, behind our backs and certainly not without a record of what was said that we can read and correct. It really isn't too much to ask. And on top of that, we need a benefits system that is fair, easy to navigate and makes sense.
The reforms promised a lot. The SEND Minister, Ed Timpson, has heard parents' feedback that despite the new legal framework, their experiences really haven't changed. And they won't, until those who carry it out understand it and follow the letter AND the spirit of the reforms. The government is partly to blame for having rushed through implementation for purely political reasons. People are not robots and change, both practical and cultural, take time. Those doing the implementing were not given that and parents are living with the result.
But what happened to Donald?
Donald's story, unlike ours so far, has a happy ending. He's now 82 years young and thanks to his parents and the supportive environment in which he was raised, he still lives in his own house, the same one he grew up in. He has friends, drives and plays golf. During his younger days, he travelled on his own the length and breadth of the United States and many other countries as well. Donald's life has been a success.
We'd all like something similar for our kids too.
Tania is an experienced broadcast and print journalist & author. She also runs a PR, web & social media consultancy, SocialOro Media.
Tania is a rare disease & chronic pain patient advocate with Ehlers Danlos syndrome.
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