Charlotte Moore is an author, journalist and Parent Patron of Ambitious about Autism. Here she writes about her hopes and fears for her son Sam as he moves on from school and in to adulthood. We hope readers will share their own experiences and opinions about this transition period.
My son Sam left school in July 2011. Sam has autism with learning difficulties. At 19, he has reached the age at which the government relinquishes responsibility for the education of people like him.
I hope I won’t come to look back wistfully at Sam’s school years as a lost golden age. I hope that the home-based timetable I’m in the process of constructing will serve his needs. But I’m daunted to
discover how much is down to me.
For a long, long time — almost as long as he can remember — Sam has been in a purpose-built special-needs environment, working closely with teachers who knew him and his condition well. The rhythm of his life was shaped and contained by the comfortable and predictable pattern of taxi, school, taxi, home. Of course it wasn’t all plain sailing, but Sam learned habits of compliance, of turn-taking, of knowing what would happen each day. He knew who and what he could trust. In July, overnight, all this security, all these painstakingly-built structures, disappeared. I couldn’t prepare him for his future, because I didn’t know what it was.
Sam’s reaction to transition was unsurprising. He became aggressive and destructive, as he always does in response to stress. He smashed plates and glass, he tore up his clothes, he thumped people, bit his hands, banged his head, and threw his belongings — and other people’s — out of the window. “Did you have a good summer?” people ask. Well,
not the best…
I knew exactly what I wanted for Sam when he left school. I wanted him to live at home, and attend a college designed to accommodate sensory hypersensitivities. I wanted him to work, as close as possible to one-to-one, with staff expert in autism. I wanted speech therapy, music therapy, occupational therapy — he has responded to well to all of these in the past. I wanted somewhere that would cater for his limitless physical energy, somewhere that would slowly, carefully, build bridges between his world and the world outside. Above all, I wanted a college that would acknowledge that his capacity to learn, his need to be educated, did not end with his nineteenth birthday.
Where we live, no such college exists. In some ways we’ve been lucky; Sam’s got a fairly hefty budget from social services, which I have divided between two days at a day centre, one night a fortnight in respite care, and twenty-eight hours a week with a personal assistant. After a couple of difficult months, I think I’ve found the right people for the job. But constructing Sam’s new life has felt like reinventing the wheel. His assistants, though full of energy and enthusiasm, are untrained, except by me. And the budget does not stretch to the therapies that used to benefit Sam so much.
Ambitious about Autism is absolutely right in targeting the lack of provision for autistic school-leavers. The cut-off point for educational provision is modelled on neurotypical development. How much research has there been on patterns of autistic learning in adulthood? In talking to parents of older “children”, I’m struck by how many of them insist that the capacity for learning continues well beyond the teenage years – that startling progress can be made into the twenties, thirties and beyond. A legal right to educational support up to the age of 25, as advocated by Ambitious about Autism, would be a huge advance in autistic well being.
Of course, establishing colleges for young adults with autism will be expensive. But failing to establish them is a false economy. The annual cost of supporting people with autism in the UK is estimated at a staggering £27.5 billion. This cost is the result of the very high level of dependency among autistic adults. Every small step away from dependency reduces this bill. Tailor-made education continuing into the mid-twenties, building on the gains already made at school, is the obvious way to minimise such dependency.
I’ve already seen the truth of this in action within the microcosm of my own family. Sam’s elder brother, George, is also autistic. George is more academically able — certainly more verbal — than Sam, and his behaviour is less challenging. He has been fully funded for a three-year residential course at a Mount Camphill Community, run according to the theories of Rudolf Steiner. Sam requires a higher level of supervision than this course can offer, so it’s not the answer for him, but it’s just right for his brother. The well-structured blend of arts, crafts, life skills and work experience, the gentle community life, and the emphasis on physical and spiritual health, has enabled George to reach a level of competence and independence that I could not have dreamed of a few years ago.
I don’t think George will ever achieve full independence. He’s a vulnerable, naïve young man who will always need sympathetic support. But the training he has received will enable him to establish a sheltered life away from home, a secure, fulfilling life in which he can explore his interests, express his personality and develop his talents. The money spent on George now will certainly make him a less expensive proposition in the future — and a happier person.
Autistic school-leavers don’t just melt away. An autistic child becomes an autistic adult. Lack of educational provision after the school years puts enormous strain on families, and on social services, who face the daunting task of shoehorning people with very complex needs into inadequate and inappropriate placements. School-age provision in [the United Kingdom] isn’t perfect, but it’s among the best and most comprehensive in the world. It’s time adult services caught up.
George and Sam, Charlotte Moore’s memoir about family life with two very different autistic sons, has been updated and reissued by Penguin.
Watch Charlotte Moore discuss her book:
A version of this essay was published at www.ambitiousaboutautism.org.uk