From The Sunday Times
August 16, 2009
Families complain there is not enough support and a postcode lottery syndrome for sufferers of autistic-spectrum disorder
Peter Griffin is 29, he has an IQ of 159, a degree in astrophysics, and a gallows humour about his Asperger’s syndrome, an autistic-spectrum disorder that makes social interaction so difficult that his longest — indeed his only — stretch of paid work has been a Saturday job in Tesco, which he has had since he was 16. He is so wired after his shift that he is awake until 4am and it takes him the rest of the week to recover: “At the end of a day trying to be ‘normal’, acting the part, wearing the mask and reining myself in, I’m like a pressure cooker.”
Very few people outside his family seem to understand Peter’s needs. At 11, an educational psychologist said, “I’m happy to tell you that Peter is among the top 2% of the population,” which, since Peter was unable to get anything down on paper, made his parents feel worse rather than better. “His teacher used to say, ‘If only I could find the starter button.’” At secondary school, homework involved standing next to his mother, Ann, who would say, “Why? What? When?”, then quickly type what he said. “He knew all the answers. But his thinking was, ‘Why are they asking?’ It made no sense to him.”
Peter’s contextual memory is so bad he doesn’t remember this, but Ann, who works full time at a local college, vividly recalls the late-night battles. Peter couldn’t stand the crossing of the boundaries between school and home: “They are two separate entities and I didn’t like the lines being blurred,” he says. Because he didn’t conform, he was labelled uncooperative and lazy. Only his maths teacher seemed to get him. He told his parents: “Peter is Peter. We should encourage him to be himself, not change him.”
But being Peter has not been easy. Asperger’s was not recognised or routinely diagnosed until the early 1990s. Peter says he thought he was going mad. Ann remembers ringing round, trying to get some support for him, and being told it was her problem. She needed to let go. Then, when the Griffins’ youngest child, Stephen, started school, Ann went in to see his teacher and watched aghast as Stephen collected hundreds of rubbers and lined them up under a chair. “I said, ‘Do you think he’s like Peter?’ And his teacher said, ‘I think he’s much worse.’ ” Stephen’s severe autism was diagnosed at eight, at which point the penny dropped and Peter, then 19, got his diagnosis.
“Michael, our second boy, is what we call neuro-typical,” says Ann. “He was sociable, able, all the things Peter and Stephen weren’t. He was our touchstone. We kept saying, ‘Thank God for Michael, because we know we’re not bad parents.’ ”
Stephen Griffin is clear-skinned and luminously good-looking, an 18-year-old with the guilelessness of an eight-year-old. His passion is racing cars. He can tell you the name of every Formula One champion back to 1950, yet he doesn’t understand that a bus that takes him one way will also bring him back. The rest of us assume an awful lot about the world, based on knowledge we have gathered and processed. People on the autistic spectrum assume nothing: just because a traffic light turned from red to green last time, it doesn’t mean it will do so again. It makes every step a perilous one.
With his mother’s help, Stephen got a handful of GCSEs — Ann took two weeks off work and together they learnt about the Chinese revolution and the life of plants. But since his statement of special needs ended at 16, he has had no transitional support. Apart from taking an animal-care course at college — the idea being that through caring for animals, he would learn about taking care of himself — he has been stuck at home, watching racing on TV. He has a normal IQ but is profoundly autistic. If you say, “Would you like to work in a shop?”, he will say “No”, because he has no way of knowing if he’d like it. And anyway, one shop is not the same as another.
Support for Stephen has been patchy and fairly pointless. “I want to help him move towards work,” says Ann. “But the courses available to him seemed designed purely to keep him out of his bedroom for a year.”
Last year, as part of its I Exist campaign, the National Autistic Society (NAS) commissioned the largest ever UK survey on the experiences of adults with autism and their families. It identified a fundamental problem: nobody — not government nor health authorities nor primary care trusts — knows how many autistic adults there are in England. No wonder, then, that so many don’t have access to the services they need. The National Audit Office, crunching the figures it has on children, estimates that there are half a million people with autistic-spectrum disorders in the UK, of whom around 400,000 are adults, ranging from the mildly affected to those who will need lifelong care. A recent study suggests that autistic adults cost the economy around £25.5 billion a year, 36% of which is accounted for by lost employment. The government is now committed to developing a national adult-autism strategy, which includes the appointment of a full-time autism specialist within the Department of Health, and training for social and healthcare professionals. Every parent has his or her own professional horror story, from the GP who thought Asperger’s was a childhood syndrome — “Do they think kids magically shed ASD when they’re 18?” asked one parent incredulously — to the social workers who repeatedly lump young adults with ASD (autism-spectrum disorder) together with those who have mental-health or severe learning difficulties.
Dedicated teams within local authorities will now be tasked to ensure that every 14-year-old with a statement has a transition plan. This is a statutory requirement set out in the SEN (special education needs) code of practice, yet at present only 34% of children with ASD have them. The consequences of getting things so badly wrong are huge. Currently, only 15% of adults with ASD are in full-time employment, and they report that their experiences at work are marred by misunderstandings and inadequate support.
Peter Griffin still shares a bedroom with his 25-year-old brother, Christopher. Christopher has a long-term girlfriend, and their brother Michael, 27, is married. Does Peter see himself married one day? “Oh dear,” he says. “Hmmm. Yes and no.” My questions on this subject are relayed through Ann. Peter is keen to answer, but points out that I’m looking at all this from a neuro-typical point of view. “I’ve never had a girlfriend, so how can I know if I’d like one?” Do you have friends? There is a long pause. “Not really, no. It’s difficult. To develop. To maintain…”
He says working out the basics of social etiquette has been “like learning times tables”.
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