Growing old with autism

IN MID-2007, I set off to meet with geneticists, epidemiologists and doctors who specialise in researching and treating autism.

I was seeking a novel therapy for my 42-year-old autistic younger brother Noah. I was also looking to discover how heightened awareness of autism — it is now among the most financially successful and mediagenic diseases ever, with hundreds of millions of dollars a year going to research, and regular press coverage — might have resulted in new and innovative programmes for adult autistics like Noah.

Autism was already widely being described as an epidemic, affecting as many as 1 in 150 8-year-olds, according to the US Centres for Disease Control and Prevention. We had come a long way since Noah got his diagnosis in the late 1960s, the so-called dark ages of autism, when many pediatricians believed they had never seen a case, and so-called refrigerator mothers were mistakenly blamed for their children's withdrawn, antisocial condition.

But now, with autism described to me as "the disease of the decade" by Peter Bell, the executive vice president of programmes and services for the advocacy group Autism Speaks, I thought perhaps there was hope, even for low-functioning adult autistics like Noah.

Noah has been my family's focus for decades. As a baby, he had been very slow to turn over, crawl or walk, and each subsequent developmental milestone was even more delayed as he grew into adulthood. My parents did everything they could for him, moving us from New York to Los Angeles in the early 1970s to be closer to a pioneering autism programme at the University of California at Los Angeles, opening their own day care centre for the developmentally disabled, even creating a one-on-one assisted-living situation for Noah — years before this became common — so that they could delay institutionalising him.

I toured those state hospital systems with my parents when we started looking for a place for a growing-up Noah. Those were terrifying visits: adult patients wearing helmets and restraints, howling and hitting themselves. This was during the 1970s when the scandals at state psychiatric hospitals like Letchworth Village in New York and Camarillo in California were making terrifying headlines. Clients at Camarillo were dying from neglect and improperly administered medications. We had to keep Noah out of that system for as long as we could.

Eventually, when he was 22, Noah had to leave home. He graduated from his special needs school on a bright, sunny Orange County day; he was beaming, handsome in his bright blue cap and gown.

But for the profoundly autistic, graduation is perhaps the saddest day in their lives. For those who cannot enter the work force, continue on to more education or find some sheltered workshop environment with adequate staffing, there are few options.

Far too few programmes and resources are allocated for adults with autism.

Noah has been in and out of sheltered workshops, but these are always under threat because of state budget deficits. Noah has been asked to leave some programmes because he was too low-functioning. For several years, we have been trying to find a day programme where he might interact with others and perhaps perform some simple, menial job. We have long since given up any hope that he might continue in adulthood the behavioural therapies that are now considered standard for autistics; unless the family is willing to pay the bulk of the cost, there is very little out there for men and women like Noah.

The US Department of Health and Human Services has characterised it as a "disorder of childhood". There are practical reasons for this: early intervention has been shown to be the most effective therapy. The trend in autism treatment has been to steadily lower the age at which intensive intervention commences — as early as five months, according to some experts.

As I spoke with the experts, I began to see that the focus on children had influenced not only the marketing of autism, but also research and treatment. It seemed the majority were interested in children only, the younger the better.

"The best time to look is at the early ages, when autism is developing," Sophia Colamarino, vice president of research at Autism Speaks, told me a few months ago, explaining that was also where there had been the most treatment success. "I'm not making excuses, but that's really why more research into adults with autism hasn't been done."

That change can't come soon enough. Even with state-of-the-art early intervention — eight hours a day, seven days a week — many autistics will need support throughout their lives. The reality is that very few, perhaps only 10 per cent, of those as severely autistic as Noah benefit from the current interventions to the point where they become functioning members of society.

If the current Centres for Disease Control estimation of prevalence is correct, then there will be an awful lot of adult autistics who need lifetime support and care.

Noah's life has been a grim study in how scarce those resources are.

New York Times