There is a deductive argument so straightforward and sound that all intelligent, educated, free-thinking people should be able to grasp it with ease. It’s so patently obvious that I shouldn’t even need to write it down because we all just know it to be true. I will, however, because it is necessary for what follows.
- Autism is incurable.
- Children grow up.
- Therefore, children with autism become adults with autism.
I mean, it couldn’t get much simpler than that. You’d have to be a philosophical contortionist to somehow argue against it.
And yet, looking at the way that autism is treated, represented, categorised, theorised and mythologised, you’d be forgiven for thinking autism is a childhood disorder that disappears on your eighteenth birthday. You step up to your birthday cake a person with autism, and as you blow out the candles, lo and behold, you’re neurotypical! Hallelujah!
It strikes me as bizarre that even though we all know that children with autism become adults with autism, the latter group is virtually invisible. From the services available, to funding, to treatment, to research, to specialists, to TV programmes, to books, to websites, to expertise, it’s all heavily skewed towards children with the condition. Much of it simply vanishes as soon as a person reaches their majority, as though nobody realised that these children with needs would one day become adults with those same needs that are now, sadly, unsupported.
Go look at 100 books on autism, you’ll find that around 99 of them have children or childlike images on the cover, and contain chapters dealing with school and adolescence and how you can help your child make friends. Research the statistics on autism and you’ll find statements like, ‘1 in 88 children has autism’, when surely they mean 1 in 88 people has autism? Then try and find academic studies on autism and sex or on parents with autism and you’ll find it pretty damned hard, because the experts don’t seem to realise that autism extends beyond the first eighteen years.
When, as an adult, I spent a decade seeing psychiatrists and psychologists under the Mental Health Team, not one of them ever brought up the possibility I might have autism. When I asked to be seen by an autism specialist, I discovered there was one person qualified to diagnose adults in the whole of Dorset – a county with a population of almost 800,000 people – and she could only devote one day a week to this. When I was finally diagnosed with autism at 28 (and immediately discharged by the Mental Health Team because ‘autism isn’t a mental illness’), I went to the Learning Disabilities Team, to be told that all of their support services were for children with autism, and they had neither the funding nor the expertise to cater to adults. So that was that.
But the greatest irony, and to me the greatest illustration of this very real problem, is the book I had published last month. Now, I am incredibly grateful that it has been published and I’m gratified to learn it is helping people, but I wrote it specifically to address a shortfall in the autism literature, namely, people diagnosed with autism as adults. The book is entitled An Adult With an Autism Diagnosis. It is written for adults with autism, about adults with autism by an adult with autism. So where does it appear on Amazon?
Here’s the directory information: Health, Family & Lifestyle > Pregnancy & Childcare > Children’s Health & Nutrition.
Ever get the feeling you don’t exist?
Aspie Daddy 
[…] have mentioned before the overwhelming focus on children in the literature on autism, and the corresponding lack of study on adults with the condition. […]
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Amazon is horrid about its categories. But when I self-published I had the option of selecting two (only two though) categories. Could you perhaps take it to psychology or self-help? I’m sorry I can’t help more than that as I wrote fiction and am not as familiar with non-fiction categories.
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I have discussed this topic with many families and professionals I’ve worked with over the years. There is a dearth of services available for adolescents and adults with autism. We need to try increase capacity of those who are able to or willing to work with older individuals. My field, applied behavior analysis, has no shortage of therapists who want to work with young children with autism. We should encourage universities to include practicum experiences in adult settings.
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I think most people believe that if your autism is (supposedly) cured (which it isn’t), then an adult with autism would have already learned how to manage their symptoms from all the childhood material. They believe adults would know enough as an adult to overcome or compensate for their shortcomings. Of course, this is not always the case, as you have pointed out…
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My boyfriend aged 54 has aspergers and it has been a very hard life. Bullied all his life for not fitting in he craves alone time where he feels less anxious. He has a rigid routine that he adheres to daily. He eats the same (soft) food daily and does everything at the same time. He doesn’t socialize with anyone not even his family. Its sad that he was given so much grief for just being himself. He is a very sweet man.
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Mildly autistic grownups learn to hide their autism, their differences. I learned not to flap my fingers in public and controlled my rage attacks. I’m not as terrified of noise as I used to be. Mild autism can be transparent in adulthood.
But a diagnosis is very important at any age, and grown aspies need help too. It would’ve been a great help if someone helped me out with suggestions about employment or how to deal with bullies. I had to figure it all out on my own, and it wasn’t easy. Up to this day, I ask my nieces what does it mean when a person says/does this and that, and how should I respond. They’re so much better at social cues than I am. I still need advice from time to time.
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