The autism community is a fractious bunch. We argue over the causes of autism, the best treatments, or even if it should be treated at all. But we do share a common anxiety: the DSM-5. This latest version of the Diagnostic and Statistical Manual of Mental Disorders, released by the American Psychiatric Association this month, officially eliminates many familiar autism spectrum diagnoses. Asperger’s syndrome (typically applied to those with no intellectual disability or language deficit); pervasive developmental disorder, not otherwise specified (generally given to higher-functioning individuals who may not meet all the criteria for autism); and childhood disintegrative disorder (attached to kids who develop typically and then experience severe regression after the age of 3) are now incorporated into the single diagnosis of autism spectrum disorder. This anxiety ranges from a mild concern on the part of some parents to angry protest: More than 8,000 people signed an online petition circulated by the Global and Regional Asperger’s Syndrome Partnership; another petition sponsored by Asperger’s Association of New England received 5,400 signatures.
The logic behind the changes seems sound. “There wasn’t any evidence after 17 years that [the DSM-IV diagnoses] reflected reality,” says Bryan King, director of Seattle Children’s Autism Center, who served on the APA task force charged with revamping the diagnosis. “There was no consistency in the way Asperger’s or PDD-NOS was applied.” In fact, a 2011 study by Catherine Lord (another member of the task force) and more than 35 colleagues reported, “In these 12 university-based sites, with research clinicians selected for their expertise in ASD and trained in using standardized instruments, there was great variation in how best-estimate clinical diagnoses within the autism spectrum (i.e., autistic disorder, PDD-NOS, Asperger’s disorder) were assigned to individual children.” In other words, the diagnoses children received depended largely on where they were diagnosed.
Yet those diagnoses had serious implications. Certain states provide services for children diagnosed with autism but not for those diagnosed with Asperger’s. “It was difficult to get kids with Asperger’s services because their deficits can be subtle, so they were left on their own to some degree,” says Matthew Siegel, director of the Developmental Disorders Program at Spring Harbor Hospital in Maine. And it’s not just those with Asperger’s who have been shortchanged by the current system, says Stewart Newman, who treats kids from all parts of the spectrum at Mind Matters PC in Oregon. He has spent many hours advocating for his patients with educators who had “a lack of clarity about what the diagnosis of PDD-NOS in particular meant, and how the children should be characterized for special services.” Newman says the DSM-5 criteria “will create a common language we can use when we talk with school systems, parents, and other doctors, and it will mean the same thing for everyone, which will be really helpful.”
But outside the psychiatric field, many people defend the current diagnostic distinctions. Simon Baron-Cohen, director of the Autism Research Center at Cambridge University, wrote in a 2009 editorial in the New York Times that Asperger’s may be a biologically distinct syndrome; his team identified 14 genes that might be associated with the condition. A 2012 study of more than 540 Australian health and education professionals found that 93 percent thought there was a real difference between autism and Asperger’s. Just over half of the respondents were opposed to the consolidation of the diagnoses, while less than a quarter supported it.
And the parents I spoke to all felt that the old system worked just fine. There is real mistrust on the part of some, who suspect the new criteria were designed to exclude higher-functioning kids from a diagnosis and thereby deny them services. “There are those of us who see this as a blowback to the increased awareness generated by advocates,” says Mark Olson, the father of an autistic daughter and the founder of LTO Ventures, a Nevada-based nonprofit that develops residential communities for autistic adults. Tom Hibben, father of a 10-year-old boy with Asperger’s and author of the Adventures in Asperger’s blog, agrees: “It really seems to us like they’re changing the guidelines to affect the prevalence rate.”
King states unequivocally that the task force had no such ulterior motives. “There was never an attempt on the part of the committee to rein in the Asperger’s diagnosis,” he says, pointing out that those who may not meet the new criteria probably didn’t meet the old ones. This echoes the common concern—articulated most famously in the 2012 New York Magazine feature “Are You on It?”—that Asperger’s has evolved into a cultural shorthand for eccentricity and social awkwardness. Asperger’s syndrome, like every other diagnosis in the DSM, including anxiety and depression, has always required significant impairment. Still, those who already have a diagnosis “should just be transferred into the new system automatically,” says King. “This isn’t an administrative mandate for rediagnosis.” But that doesn’t mean that school districts and insurance companies won’t take it as one if they see a way to control costs.
In fact, there are elements of the DSM-5 criteria that should make it easier to get a diagnosis. For the first time, doctors will be allowed to consider a patient’s history instead of focusing solely on behaviors present at the time of evaluation. That means someone who gets better can still be eligible for mental health services. “If a person at one time had reduced eye contact but over the years, through intervention, no longer has it as a symptom, you can now count that in determining whether autism was an appropriate diagnosis,” King says. Also, the checklists of DSM-IV have been replaced by ranges of behavior that include less severe symptoms.
Only a few studies have evaluated whether the DSM-5 criteria will prove more or less exclusionary, and they have been inconsistent, to put it mildly. Judith Ursitti, mother of two children on the spectrum and the director of state and government affairs for Autism Speaks, points to one study by APA task force member Lord suggesting that only about 10 percent of individuals currently diagnosed would not meet DSM-5 criteria; a study by Fred Volkmar, director of the Child Study Center at the Yale School of Medicine, however, found that a staggering 75 percent of those with Asperger’s and 85 percent of those with PDD-NOS would fail to meet the new requirements. “If it plays out the way the APA says it’s going to, it should be fine. It should just be a name change,” Ursitti says. But Autism Speaks isn’t taking the APA’s word for it. The organization is funding a study with the Centers for Disease Control and Prevention to assess the impact of the new criteria, and it has also already designed two online surveys so families, teachers, doctors, and other providers can report their experiences.
It’s not only the fear of losing diagnoses that has parents and diagnosed individuals challenging the APA. Some say that the word autism carries a greater stigma, which may keep high-functioning individuals and their families from pursuing a diagnosis and the support that comes with it. As high-school senior Hannah Fjeldsted, who has Asperger’s, articulated clearly (if a bit insensitively) in a guest blog post at Autism Speaks, “The label of Asperger’s at least gives observers the impression of intelligence and ability. But when most people think of ‘autism,’ they think of someone who should be institutionalized.” Hibben also expresses concern over whether his son will embrace his diagnosis when he’s a teenager. “Now it’s almost cool to have Asperger’s,” he points out. “The Big-Bang Theory and Parenthood feature characters who have it.”
Parents of lower-functioning kids are also concerned about how the influx of high-functioning individuals will affect the public’s perception of autism—mainly because they feel autism is a serious disorder that people should associate with profound disability. One mother commented online that “the proposed DSM change would diminish the enormity of the challenges that those with moderate to severe autism have.” Ursitti, who has a daughter with Asperger’s and a son with severe autism, feels this is already happening: “If we have this national perspective that autism is a blessing, that it’s not a crisis, the ones who will lose out are the expensive ones, the severe ones. Legislators focus on the cheapest option, and celebration is cheaper than treatment.”
The new diagnosis won’t simply lump all cases together. DSM-5 includes new qualifiers (including intellectual disability, language ability, and regression) and severity levels (1 to 3) designed to capture the wide range of symptoms. To receive a diagnosis of autism spectrum disorder, a child must present with deficits in two categories: social communication and restricted, repetitive behavior. A severity level is assigned to each of these dimensions. A child may walk out of an evaluation by a developmental pediatrician with the following diagnosis: “autism spectrum disorder with intellectual delay and regression; social communication severity level 3; restricted, repetitive behavior severity level 2.”
A child who exhibits no restricted, repetitive behaviors may walk out with a new diagnosis instituted in DSM-5: social communication disorder. It’s unclear how this new diagnosis will affect the autism community. Ideally, it will allow clinicians to identify opportunities for intervention. King mentions as an example a child with ADHD who doesn’t respect personal space or take turns. But Hibben says the new diagnosis is “a way to appease those who might lose their Asperger’s diagnosis, although it might not get them anything.” Thirty-seven states, plus the District of Columbia, have passed laws regulating insurance coverage of autistic children, but those laws won’t apply to those with social communication disorder, since it’s not part of the autistic spectrum. “We’ll have to watch that carefully,” Ursitti says.
She won’t be the only one. The entire mental health community has eyes on the APA now. Although many clinicians welcome the new edition, the votes of no-confidence have already begun. Psychology Today reports that there are calls for a DSM-5 boycott not only in the United States but also in England, France, Australia, Spain, and Italy. And National Institute of Mental Health Director Thomas Insel dismissed the DSM for its “lack of validity,” adding “Patients with mental disorders deserve better.”
But even the members of the APA task force aren’t carving any DSM diagnostic criteria in stone. You may have noticed that with this revision, the APA has gone from the Roman numerals that were used previously (i.e., DSM-IV) to Arabic numbers (DSM-5). King explains, “This is meant to reflect that this is DSM-5.0, with the expectation that there can be ongoing updates and refinements that won’t require the creation of a whole new version. This is more of an evolving document than what we’ve had in the past.”
King should be careful what he wishes for. If there’s anything besides fractiousness that unites the autism community, it’s our persistent advocacy. We won’t hesitate to let the APA know how the DSM changes are affecting us—and they will doubtlessly affect us differently. We’ll see how the task force will consider that avalanche of feedback.