The frontier of the fight for autistic rights is adulthood

Massive questions about lives beyond childhood have gone unanswered for decades

This post was inspired by the response to the last one from subscriber Rebecca Harris (no relation)

To start, let’s go back to the early 1970s – when autism was not a new front in the culture wars, but a word not much known beyond academia (unless you’d seen Change Of Habit, a somewhat odd Elvis movie made in 1969).

Reading books on the subject from back then can be a fascinating experience. You find observations and theories that later bloomed into certain knowledge about the autistic spectrum and what it involves. But there is often a depressing, unsettling sense of too many misplaced beliefs and blind-spots that still exist all these years later. There is probably no better example of the latter than something that is both real and true, and difficult to explain: the lingering idea of autism as something bound up with childhood, which results in an awful ignorance about the lives and experiences of autistic adults, particularly those who also have learning disabilities.

Here, it seems to me, is where you find the frontier of the fight for the rights of autistic people – and, very often, the limits of even the most enlightened people’s understanding of how much work there is to do.

My new memoir Maybe I’m Amazed is all about my son James, who was diagnosed when he was three, and how songs very quickly became our shared language. Once we knew he was autistic, in between marvelling at his appetite for music, I began collecting books about autism from across the decades. Some of the most compelling were either written or edited by Lorna Wing, the brilliant English psychiatrist whose inspirational work led to the concept of the autistic spectrum, and whose insights were partly grounded in the life of her autistic daughter, Susie.

Among the books I own with her name on them are a parental handbook called Autistic Children (1971), and Early Childhood Autism, a collection of essays from 1976, whose title reflected the concept of “early infantile autism” pioneered in the 1940s by the Austrian-American Leo Kanner. Give or take the dated vocabulary they use – there are liberal uses of words like “retarded” and “handicapped” – both texts are full of arguments and observations that point to the future. But as evidenced by their titles, one glaring deficit is striking: a lack of material about grown-up autistic people.

There are flickers and flashes: brief descriptions of “sheltered workshops” where some people could find an approximation of paid work, and “village communities for handicapped people”, which involve another of Wing’s forward-looking glimpses. “As yet there is no sheltered community specifically for autistic adults,” she wrote, “but this is a possible experiment for the future.” Everything seems tentative and uncertain: she knows there are huge issues here, but not the time and resources to devote to them.

On YouTube, there’s an amazing episode of Panorama about all this, from 1974 . “Virtually no provision has been made for the adult lives of autistic children,” says the presenter. “And that has now become desperately urgent – because it’s now that the first generation of diagnosed autistic children are reaching adulthood. We can only guess at how many undiagnosed cases are already grown up, and lost to any hope of special treatment.” There’s a lot of of material – featuring Lorna, among other people – about the first autism-dedicated schools. But for its last ten minutes, the programme focuses on “a crucial and lifelong experiment in community living”, which initially involved twenty or so autistic children and young people, “for whom the official school leaving age has little or no meaning in terms of their ability” .

Somerset Court, near the coastal town of Burnham-On-Sea, was set up by a group of motivated parents and educators, and the organisation that became the National Autistic Society. Its work, which was partly focused on food-growing, lasted for over thirty years. The last phase of its existence saw a scandal about the bullying and abuse of vulnerable adults, which became public in 2016, and its closure was announced in 2020. It’s hard to separate that grim story from the early hopes the place crystallised – of a new kind of care, and lifelong education. But they were real enough, and they are still crying out for answers.

Clearly, millions of different autistic adults highlight different issues. There is one set of questions about the positives of neurodivergence for people who can thrive in paid employment providing things are flexible and autism-aware enough (see this piece I wrote about a brilliant IT company called Auticon), and how we might correct the howling social injustice summed in the fact that only three in 10 autistic adults have a job. But there is another bundle of issues for autistic people – like James – who have more complicated needs and skill-sets, and for whom work is a more problematic proposition. Quite rightly, a lot of energy is currently focused on the crisis in Special Needs Education, but it leaves the 1974 question untouched: what happens when many autistic people reach the arbitrary limits of full-time schooling? Are we really going to carry on a kind of institutional giving-up on them?

A lot of people reading this will presumably known what this feels like: dispiriting occasions when you sit in some spartan meeting-room, and have leaflets pressed on you about unpaid shifts in charity shops. I think I know what would suit James, but it sounds downright utopian: a kind of neurodivergent music school, with an abundance of technology, and the chance to develop his talents for as long as he liked. This last weekend, I watched him spend a day creating meticulous PowerPoint presentations about the discographies of The Strokes, The Beastie Boys and Mott The Hoople, before he spent an hour teaching himself how to play The Fool On The Hill on the acoustic guitar; next Friday, he will resume the weekly youth club for neurodivergent young people where they work up songs and develop musical talent. What can he do with all that?

He is now 18: my fear is that, beyond our home, there will be no provision that taps into all these appetites and talents – a door will be slammed when he reaches his early 20s, and we will find ourselves in a make-do-and-mend reality of day centres and occasional trips out. Surely, after all these years of increasing knowledge of autism and the complexities of human psychology, we can do a bit better than that.

When I meet autism experts, I often ask them which countries might be blazing a trail towards something more modern. In my naivety, I thought some or other wonderland of lifelong learning and supported living might exist in Norway, Sweden or Finland, but apparently not. So, to finish, here’s an appeal: does anyone out there know of more inspiring examples or stories? Or are we still – unbelievably enough – stuck pretty much where we were when The Beatles had just split up?

Pre-order Maybe I’m Amazed here

Further reading!

The Pervasive Loneliness of Autism, Hari Srinivisan, Time, January 2024

Autism In Middle And Old Age: What Do We Know, What Do We Need To Know? Forbes, August 2024

Current listening!

Album: The Afterlife by The Comet Is Coming, 2019

Track: Renegade, Doves, 2024