Finding the lost:

One reason older adults with autism are hard to find is that for decades, many of them were literally hidden, says David Mandell, associate professor of psychiatry and pediatrics at the University of Pennsylvania. Until the 1980s, it was common practice to institutionalize people with the disorder.

Because few people have a concept of what autism might look like in adults, behaviors such as repetitive body movements are often mistaken for signs of obsessive-compulsive disorder or even psychosis. Mental health professionals lack the skills or experience to distinguish autism from disorders with which they are more familiar.

In 2009, the newly formed Pennsylvania Bureau of Autism Services suggested that Mandell look for ‘missing’ adults with autism in institutions such as the Norristown State Hospital outside Philadelphia. Although Mandell was skeptical, he complied, using a stringent diagnostic process that would err on the side of excluding some people with autism. “We almost biased the process to not find autism,” he recalls.

By Smccphotog, via Wikimedia Commons

Mandell and his colleagues rummaged through storage rooms at Norristown, digging through floor-to-ceiling stacks of records for 141 residents, and asked the caretakers to fill out the Social Responsiveness Scale (SRS) — a screening questionnaire for autism that measures social impairment. For 61 of the residents, the researchers found a living parent or family member for the Autism Diagnostic Interview-Revised (ADI-R), one of the gold-standard tools for autism diagnosis. “Parents had exquisite and tortured memories of the child’s early experiences,” Mandell says.

His team discovered that 14 of the residents — or 10 percent — had undiagnosed autism. All but two of these people had been given a diagnosis of chronic undifferentiated schizophrenia. The fact that they were being treated for a disorder they didn’t have — and that their treatment wasn’t working — was obvious in the files. “The frustration of the psychiatrists just leaped off the page,” Mandell says. “No matter how often they changed medications or tried different treatment strategies, these folks weren’t responding to treatment. Of course, it’s because they didn’t actually have schizophrenia.”

Mandell and his colleagues shared the findings with the staff at the institution, who began to wean residents off many of the inappropriate treatments. But much of the damage had already been done.

One man at Norristown with a diagnosis of schizophrenia was “B.P.,” who was 64 when Mandell met him. Although B.P. spoke as a child, no one in the institution had heard him say a word for decades. He was being given so many powerful and sedating medications — antipsychotics, anxiety drugs and mood stabilizers — that the list filled an entire paragraph in his medical records.

When Mandell took a careful look at B.P.’s records, he found the real reason that the man had been institutionalized: B.P.’s first few medical records were written by none other than the psychiatrist Leo Kanner, widely regarded as the first scientist to recognize autism. According to the records, Kanner himself had diagnosed B.P. with autism in 1955, when B.P. was 10.

Mandell interviewed B.P.’s 92-year-old mother, who told him she had done everything she could to keep her son out of an institution. But she did not have the support she needed to care for him at home, and B.P. was becoming violent toward his sister. In his notes, Kanner had insisted that B.P. belonged in an institution because his behavior could be embarrassing — and potentially dangerous — to his sister. A year after B.P.’s diagnosis, his mother admitted him to Norristown. As Mandell worked his way through B.P.’s massive stack of records, he noticed that at some point, B.P.’s autism diagnosis had disappeared.

In response to Mandell’s re-diagnosis, the doctors at the institution lowered the dosage of many of B.P.’s medications. A few months later, B.P. was accidentally locked out of a common room. He turned to an orderly and, addressing him by name, said, “I am very angry.” It was the first thing he had said in decades.

Within a year of this breakthrough, B.P. died. “I mourn him,” Mandell says. “And I mourn the treatment he received.”

Mandell and his colleagues have since begun similar studies in community mental health centers, first screening with the SRS and subsequently performing diagnostic interviews. So far, the researchers have screened roughly 800 people without intellectual disability. Of the 60 people who were given in-person assessments, 4 have autism. Many more met the cutoff for autism, but weren’t able to visit the health center for a diagnosis. Restricting the screen to people without intellectual disability may also skew the numbers, says Mandell. He suspects that the people who need support the most might be the hardest to find.

Piven has faced similar challenges in trying to locate ‘missing’ adults with autism. In 2010, he helped organize a working group in North Carolina to explore aging with autism. The group’s first step was to look for adults aged 50 or older with autism. At first, the search seemed easy. By scouring medical records, Piven found 20 adults with autism diagnoses.

Strikingly, many were in their 80s and 90s. On further digging, Piven found that all of them had a diagnosis of fronto-temporal dementia that had preceded their autism diagnosis. This particular type of dementia can lead to social deficits that look like autism. It was clear, Piven says, that none of the individuals ever had autism at all. Relying on medical records was a bust.

The team next sent out more than 14,000 emails through an autism society in North Carolina asking for people over age 50 to give them a call. “We didn’t get a single call,” Piven says, and few email responses. It wasn’t until the researchers began recruiting people from group homes and the University of North Carolina’s autism program that they were finally able to identify 19 men older than 50. Scott, whose mother drove him to Piven’s clinic on her own initiative, was one of them.