In a Different Key: The Story of Autism (76 page)

Listening to Ne’eman addressing the governor, Bell understood that he meant Tyler no harm. But he had never lived with anyone like Tyler. Or cared for anyone like him, day after day. And despite the insinuation in Jim Sinclair’s “Don’t Mourn for Us” manifesto that parents like her wished their kids did not exist and just weren’t trying hard enough to understand them, Bell believed that no one in Tyler’s life understood him better than she did—whether he was communicating with words or not. At times, she despaired for what might happen to him after she was gone, when there might be no one left who could make sense of his wants and needs. That too was a problem neither Ari Ne’eman—nor Ari Ne’eman’s mother—would have to address.

As the event broke up, Bell could not help herself. She wanted to say all of this to Ne’eman’s face. A friend escorted her over to the office of the director of the center hosting the forum and dropped her off in front of Ne’eman, introducing her as “Liz, Peter Bell’s wife.” Noting both Bells’ past association with Cure Autism Now and current position with Autism Speaks, Ne’eman could not help himself either. He launched into his talking points about what was wrong with any group fighting for a cure. Liz Bell pushed back, describing her own son and what his life was like. She talked about the constant diarrhea. About how Tyler had been talking at two and then started losing language. About how he also lost the ability to sleep through the night, which he had also been doing until the age of three. About the pain he was often in now. About his seizures. Put all that together, she said, and that was not “another way of being human.” That was being sick.

As for Ne’eman’s distaste for the word “cure,” Bell told him: “If someday, Ari, my son and I can argue like you and I are arguing now, and he can make the case you’re making against cures—then, yeah, I will be saying he was cured.”

Ne’eman listened respectfully, but he stood his ground. He also left Bell with an insight about him she had not anticipated. His determination and his integrity as a campaigner were unassailable. He refused to mince words, fudge facts, or make plays for the affection of his audience. Even face-to-face with an autism mom, whose total love for her child and despair over his future should have been evident, Ne’eman was unyielding. He did not flinch, offer sympathy, or soften his tone. Experiencing that, Bell went home thinking that people who still seriously doubted that Ne’eman had true autistic impairments were wrong. The total imperviousness she had witnessed appeared to her to reflect not simply Ne’eman’s convictions, but also an inability to take on a point of view other than his own. This, she knew, was considered a classic autistic trait—one that Simon Baron-Cohen had referred to as
“mindblindness.”

A corollary theory, also put forth by Baron-Cohen, held that this cognitive style interferes with the experience of feeling empathy. The idea was controversial and insulting to some people with Asperger’s syndrome, who pointed to studies suggesting the empathy “deficit” in Asperger’s was overstated. But others reluctantly accepted impairment in this area as something real, part of what made Asperger’s so challenging to live with in a world of “neurotypicals.”

Ari Ne’eman was definitely on the spectrum, Liz Bell told herself as she headed for her car that day. And yes, it was integral to who he was. But she didn’t want him speaking for her son, Tyler. His condition, and Ari’s, had nothing in common.

—

T
HE NEURODIVERSITY ARGUMENT
, which continued to gain adherents, owed its existence to the recognition of Asperger’s syndrome in the latter part of the twentieth century. When Lorna Wing had used Asperger’s to make her argument that autism was a big, wide, deep,
and blurry spectrum, and the
DSM
recognized the diagnosis in its 1994 edition, the
DSM-IV
, the boundaries around the condition grew exponentially. Without both these developments, it seems unlikely that the notion of autism that Leo Kanner coined in 1943 could legitimately be stretched to include large numbers of people as intelligent, talented, and independent as Alex Plank, Michael John Carley, and Ari Ne’eman in 2010. Asperger’s was their ticket onto the spectrum—theirs and many others, and it gave the neurodiversity argument its most effective debaters and promoters.

Then, in 2013, Asperger’s as a diagnosis was killed off by the American Psychiatric Association—dropped from the
DSM
. The turnabout had nothing to do with the discoveries reported three years earlier by Austrian historian Herwig Czech, suggesting that Asperger may have cooperated with the Nazis’ program of killing disabled children. Because Czech had made his presentation in German, to a mostly local audience, his findings had made no impression in the English-speaking world, where awareness of Asperger’s predominated.

Rather, the move by the American Psychiatric Association, which had been a long time coming, was the result of continuing doubts about the usefulness of the concept of Asperger’s. This was evident in the medical literature as early as 2001. “Does
DSM-IV
Asperger’s Disorder Exist?” asked the title of an article that year in the
Journal of Abnormal Child Psychiatry
.

More such papers followed, asking similar questions, and most of them were answered in the negative. Twelve years later, a paper in
Health
was still noting that, “in scientific terms, [Asperger’s Disorder] has proved to be
rather an elusive category.”

To tens of thousands of people with the diagnosis, this seemed an absurd discussion. Of course Asperger’s existed—because they existed. And so did Asperger’s organizations, support groups, and clinics specializing in it, operating all over the United States and elsewhere, especially in Britain and Australia. But professionals who studied Asperger’s knew what some wearers of the label did not: from a scientific perspective, Asperger’s syndrome constituted a diagnostic malfunction. From the start, it had failed to meet a basic requirement: to mean the same thing every time it was used.

It was the same problem that had plagued the understanding of autistic traits from the beginning—a lack of agreement on whether everyone was even talking about the same thing. Hans Asperger had described the first cases of the syndrome named for him, but he never drew up a strict list of criteria. Lorna Wing attempted to do so when she brought Asperger’s to the world’s attention, as did Sweden’s Christopher Gillberg, whose criteria were adopted for many, but by no means all, research studies elsewhere. The
DSM-IV
committee, back in 1994, tried to define the diagnosis as well, as did plenty of others. But none of these varied lists of criteria was quite the same as any other. For example, different theorists weighed language development and intelligence differently. There was also disagreement about how to label a person whose behavior changed over time—someone who might seem more “Aspergian” later in life than he or she had in early childhood.

As ever, clinicians giving out labels were making judgments based on their personal experience and understanding of what Asperger’s should look like. And as usual, objectivity suffered in the process. One much-publicized study discovered that among
twelve different American research centers, the likelihood of a person being diagnosed with Asperger’s depended less on his or her actual traits than on which of the twelve centers he or she went to for evaluation. In another study, researchers found that, using the
DSM-IV
criteria, even Hans Asperger’s own original four cases
would not qualify for an Asperger’s diagnosis. The authors who asked “Does
DSM-IV
Asperger’s Disorder Exist?” published data suggesting to them that clinicians were simply ignoring the
DSM
definition and instead were diagnosing with
“definitions influenced by the literature and popular belief.”

“Asperger’s means a lot of different things to different people,” researcher Catherine Lord told the
New York Times
in 2009.
“It’s confusing and not terribly useful.”

As Lord spoke, yet another new version of the
DSM
was in the planning stages. She was in the working group assigned to figure out what to do about Asperger’s and the three other diagnoses based on autistic traits: Autistic Disorder (the “classic” autism), childhood disintegrative disorder, and the catchall PDD-NOS. In February 2010, the group published a draft version of its likely solution. Its plan was
to collapse all four diagnoses into one, all-encompassing diagnosis, to be known as Autistic Spectrum Disorder. It would still include a way to distinguish among various presentations of autistic traits, by introducing a scale for specifying severity of the key symptoms. This would mean that a person previously diagnosed with Asperger’s would most likely be recognized, for future
DSM
purposes, as having autism, but without accompanying intellectual or language impairment. It would also be the end of the line for Asperger’s. The name, and the diagnosis, would be departing the pages of the
DSM
forever.

Opposition came from all over the autism community.
Fred Volkmar of Yale resigned from the working group when he could not prevail upon his colleagues to keep Asperger’s alive. Temple Grandin weighed in, citing the size and vocal strength of the Asperger’s community as a reason to retain the category. “PDD-NOS, I’d throw in the garbage can,” she told the
Times
.
“But I’d keep Asperger’s.”

A New York State lawmaker, an autism dad, tried to stop the clock with a bill that would officially establish the outgoing
DSM
language as the state’s “definition” of autism. It drew 44 cosponsors in the legislature’s two houses. Some 9,000 people signed an online petition, written by Michael John Carley, opposing the changes. Another 5,400 signed a petition sponsored by the Asperger’s Association of New England, demanding that the
DSM
retain Asperger’s
“to help ensure clinical continuity and the established sense of community precious to already diagnosed individuals and families, and to maintain the hard won understanding of the label in the population at large.”

Discussions erupted on the forums of Wrong Planet. One thread, entitled “DSM-5 is
taking away our identity,” laid out one of the key fears heard in the Asperger’s community. The opening post argued that the merging of Asperger’s syndrome with autism “would do great damage to the small amount of Asperger’s awareness we have worked our A$$es off for in the past fifteen years. Autism has many negative connotations, which are not exactly unwarranted, but to be lumped into such a broad group will set us back 20 years.”

A second concern raised by the new definition appeared in a
New York Times
headline in early 2012:
“New Definition of Autism Will
Exclude Many, Study Suggests.” This touched off a whole new furor. At Yale, three researchers, including Fred Volkmar, had run some old case data through the parameters set by the proposed new definition. Their results showed that of all those in a 1993 group who had been given any of the four soon-to-be-obsolete autism diagnoses, almost 40 percent would now not qualify for the new
DSM-5
autism category. Fear spread throughout the autism community that, under the new definition, people would lose their access to government services and support.

Responding to the panic, the
DSM
working group itself issued assurances that the risk of people losing their diagnoses was an overblown concern, and that the new definition could well include people whose autism had been overlooked in the past. Before long, studies appeared supporting this prediction.

Interestingly, some of the posters at Wrong Planet made the same argument. And Ari Ne’eman began writing papers proposing that an all-in-one diagnosis should appeal to people on the spectrum because it in fact recognized the validity of the spectrum, which was a concept the neurodiversity movement cherished. Ne’eman and UCLA’s Steven Kapp coauthored a paper that praised the reconceived disorder as “a positive development both from the standpoint of expanding access to service provisions and as a means of
showing fidelity to the research literature.” As a philosophical matter, as well, Ne’eman favored the erasure of division of the autism population into so-called high-functioning and low-functioning groups, which the neurodiversity movement saw as a false division based on “neurotypical” dictates of what constituted “functioning” in the first place.

In the end, after six years of tweaking the definition of autism based on continuing research, the working group and the editors of
DSM-5
approved Autistic Spectrum Disorder—the new, all-encompassing definition of autism, which became effective in May 2013. Asperger’s syndrome was gone, although, in the words of Francesca Happé, another member of the working group, it had made a valuable contribution while it lasted. “Asperger disorder…
did a great service in raising awareness that some people on the autism spectrum have high IQ and
good language,” Happé wrote. But with that purpose served, it was also time, as Lorna Wing had been arguing for decades, that autism—whatever it was, however many ways it manifested—be recognized as something that existed across a spectrum.

At last, that was the triumphant idea.

For the time being.

—

T
HAT IS PROBABLY
autism’s single certainty: that the story is far from over. The mystery remains complex. Attempts to investigate its nature continue to bring new questions to the surface. The boundary lines set by professionals can, and should be expected to, move yet again.

In that uncertainty lies much of the explanation for why, over a span of eighty years, the story of autism has been so uniquely riven with division and dispute. The concept’s inherent elusiveness, the vagueness in how it has been described, and the variety in how it presents itself—to a degree that hints at infinity—has meant that anyone could say anything about autism, and eventually probably would. This effect was seen repeatedly, in the latching on to the word “autism” by all manner of theories, therapies, claims, interpretations, and controversies—from the scientific to the social to the legal to the nearly religious.