Autism: a puzzling disorder

LOS ANGELES When autism researchers arrived at Norristown State Hospital near Philadelphia a few years ago, they found a 63-year-old man who rambled on about Elvis Presley, compulsively rocked in his chair and patted the corridor walls.

Ben Perrick, a resident of the psychiatric institution for most of his life, displayed what the University of Pennsylvania researchers considered classic symptoms of autism. His chart, however, said he was schizophrenic and mentally retarded.

Delving into the file, the researchers learned that as a 10-year-old, Perrick had seen Dr. Leo Kanner, the psychiatrist who discovered autism. In his notes from 1954, Kanner described Perrick as “a child who is self centered, withdrawn, and unable to relate to other people,” and recommended that he be committed.

Later, other doctors relabelled Perrick. The autism diagnosis was forgotten.

The researchers found 13 other patients with unrecognized autism in the Norristown hospital — about 10 per cent of the residents they evaluated. It was a sign of how medical standards and social attitudes toward the disorder have shifted.

Over the last two decades, estimates of the autism rate in children in the U.S. and Canada have climbed twentyfold. Many scientists believe the increase has been driven largely by an expanded definition of the disorder and more vigorous efforts to identify it.

Scientists are just beginning to find cases that were overlooked or called something else in an earlier era. If their research shows that autism has always been present at roughly the same rate as today, it could ease worries that an epidemic is on the loose.

By looking into the past, scientists also hope to deepen their understanding of how autism unfolds over a lifetime.

What happened to all the people who never got diagnosed? Where are they?

Like Perrick, who died in 2009, some spent their lives in institutions. Mental hospitals have largely been emptied over the last four decades, but the remaining population in the U.S. probably includes about 5,000 people with undiagnosed autism, said David Mandell, a psychiatric epidemiologist who led the Norristown study.

Many more are thought to be in prisons, homeless shelters and wherever else social misfits are clustered.

But evidence suggests the vast majority are not segregated from society — they are hiding in plain sight. Most probably never will be identified, but a picture of their lives is starting to emerge from those who have been.

They live in households, sometimes alone, sometimes with the support of their parents, sometimes even with spouses. Many were bullied as children and still struggle to connect with others. Some were able to find jobs that fit their strengths and partners who understand them.

If modern estimates of autism rates apply to past generations, about two million U.S. adults and more than 220,000 adult Canadians have various forms of it — and society has long absorbed the emotional and financial toll, mostly without realizing it.

Stats the same for adultsThe search for the missing millions is just beginning.

The only study to look for autistic adults in a national population was conducted in Britain and published in 2009. Investigators interviewed 7,461 adults selected as a representative sample of the country and conducted 618 intensive evaluations.

The conclusion: one per cent of people living in British households had some form of autism, roughly the same rate the U.S. Centers for Disease Control and Prevention estimates for children in America today.

The British study found it didn’t matter whether the adults were in their 20s or their 80s. The rate of autism was the same for both groups.

“That would seem to imply the incidence has not changed very much,” said Dr. Terry Brugha, a professor of psychiatry at the University of Leicester who led the study. He added the findings were not conclusive and more research is needed.

None of the adults included in the study had an existing diagnosis of autism, though in a few instances relatives told researchers they had suspected it.

In one case, a man said he had asked his doctor about the possibility but was told that a diagnosis in middle age would be useless. After all, he had got this far without it.

Still, as more children are being diagnosed with autism, more adults are wondering if they have it, too.

Karl Wittig, a retired engineer from New York, had always questioned why so few social skills came naturally to him.

A diary his mother kept in the 1950s suggests he was not an ordinary child. “This last few weeks, he doesn’t pile the blocks any more,” she wrote when he was two. “He likes to put one next to the other, making a big row of 48.”

Two years later, he talked non-stop about wires, switches, light bulbs and Thomas Edison.

Wittig went on to earn undergraduate and master’s degrees from Cornell University and New York University in physics, electrical engineering and computer science. In the research laboratories where he worked, he felt he fit in.

“I went into a field full of eccentric people,” Witting recalled. “I was just another eccentric person.”

Wittig said he eventually figured out how to behave in social situations — to refrain from correcting other people’s mistakes, flaunting his math abilities or rambling on about his own interests. He married a former nun 18 years his senior. She died of cancer after two decades together. Wittig described the marriage as happy.