Panic Over DSM-5 Changes in Autism Diagnosis
1. There has been a great deal of legitimate worry over proposed changes to the way that autism will be diagnosed in DSM-5. The suggestion is to eliminate specific diagnoses like Asperger's syndrome and PDD-NOS and have just one general autism spectrum disorder. This worries both people who are concerned that the needs of the most severely disabled will be ignored and those who fear that people whose needs are less immediately visible will not be able to get a diagnosis and will be denied services.
2. Although those are real concerns, I think the change is good. Diagnosis varies too much from doctor to doctor, and level of functioning varies too much within the life of an autistic individual, for rigid categories to make sense. It is important that we remember that Asperger's syndrome is separated from autism more by geography than by anything else. If Leo Kanner and Hans Asperger had done their work in the same country, or had worked together, the concept of dividing the spectrum as we do would never have occurred to us.
3. There is great consternation in Autismland over an article that just appeared in The New York Times. Dr. Fred Volkmar is sounding alarm bells over the proposed changes in how autism is approached by the DSM-V:
“The proposed changes would put an end to the autism epidemic,” said Dr. Fred R. Volkmar, director of the Child Study Center at Yale University School of Medicine and an author of the new analysis. “We would nip it in the bud — think of it that way.”Experts working on the new definition — a group that formerly included Dr. Volkmar — strongly questioned the new estimate. “I don’t know how they’re getting those numbers,” said Catherine Lord, a member of the task force working on the diagnosis.
Well, Dr. Lord, here's where he's getting those numbers from:
In the new analysis, Dr. Volkmar, along with Brian Reichow and James McPartland, both at Yale, used data from a large 1993 study that served as the basis for the current criteria. They focused on 372 children and adults who were among the highest-functioning and found that over all, only 45 percent of them would qualify for the proposed autism spectrum diagnosis now under review. The focus on a high-functioning group may have slightly exaggerated that percentage, the authors acknowledge.
The likelihood of being left out under the new definition depended on the original diagnosis: About a quarter of those identified with classic autism in 1993 would not be so identified under the proposed criteria; about three quarters of those with Asperger’s would not qualify; and 85 percent of those with P.D.D.-N.O.S. would not.
Dr. Volkmar presented the preliminary findings on Thursday. The researchers will publish a broader analysis, based on a larger and more representative sample of 1,000 cases, later this year. Dr. Volkmar said that although the proposed diagnosis would be for disorders on a spectrum and implies a broader net, it focuses tightly on “classically autistic” children on the more severe end of the scale. “The major impact here is on the more cognitively able,” he said.
4. This is a massively stupid argument, as the befuddled Dr. Lord explains:
Dr. Lord said that the study numbers are probably exaggerated because the research team relied on old data, collected by doctors who were not aware of what kinds of behaviors the proposed definition requires. “It’s not that the behaviors didn’t exist, but that they weren’t even asking about them — they wouldn’t show up at all in the data,” Dr. Lord said.
In other words, doctors are going to find what they are looking for, and the diagnostic standards are going to influence both the data they collect about their patients and their interpretation of it. Studies with better data indicate that Volkmar is incorrect. However, those studies were done by people who wanted evidence to support the proposed changes, so, even though they are actually using data taken for the purpose they are using it for (usually important in the social sciences), they are just as partisan as Volkmar. Scientists mostly find what they are looking for, too. It's called confirmation bias, and it is one of the things that makes most autism research a waste of money and time.
5. The diagnosis of autism is already an extremely subjective matter. Dr. Lord's research indicates that whether people are diagnosed with autism or Asperger's depends more on which doctor they see than what symptoms they present. Girls are less likely to be diagnosed than boys, even when they actually display more evidence of autism.
I was much less alarmed by this article than by Alan Zarembo's series in The Los Angeles Times, which carefully painted a picture of autism diagnosis as a scam that benefits the white and the wealthy:
Peter Bearman, a sociologist at Columbia University, has demonstrated how such social forces are driving autism rates.
Analyzing state data, he identified a 386-square-mile area centered in West Hollywood that consistently produced three times as many autism cases as would be expected from birth rates.
Affluence helped set the area apart. But delving deeper, Bearman detected a more surprising pattern that existed across the state: Rich or poor, children living near somebody with autism were more likely to have the diagnosis themselves.
Living within 250 meters boosted the chances by 42%, compared to living between 500 and 1,000 meters away.
The reason, his analysis suggested, was simple: People talk.
They talk about how to recognize autism, which doctors to see, how to navigate the bureaucracies to secure services. They talk more if they live next door or visit the same parks, or if their children go to the same preschool.
The influence of neighbors alone accounts for 16% of the growth of autism cases in the state developmental system between 2000 and 2005, Bearman estimated.
In other words, autism is not contagious, but the diagnosis is.
“`Is it real or not?' is a meaningless question,” Bearman said of the surge in cases. “The sociological processes are as real as the biological processes.”
He highlights the fact that some doctors seem to want to give the diagnosis that will proved the most services, not the most accurate one:
In ambiguous cases, some clinicians see it as their moral duty to diagnose autism.
Dr. Nancy Niparko, a child neurologist in Beverly Hills, said that whether she identifies a child as autistic can come down to whether she believes it will do any good.
“If it's going to improve the possibility of getting services that will be helpful, I will give the label,” she said.
“I don't work for labels. Labels work for me.”
Bryna Siegel of the Langley Porter Psychiatric Institute in San Francisco is at the other extreme, believing that children cannot be autistic if they exhibit behaviors she regards as too neurotypical, as she explains the case of a 7-year-old girl:
Siegel also noted that testers had at various points written that she was “friendly and cheerful,” engaged easily in conversation and used a variety of gestures and facial expressions.
“The girl told me about her friends,” said Siegel, who interviewed her and her mother during a two-hour video conference.
Siegel suspected that the girl's problems stemmed from obsessive compulsive disorder and poor discipline at home. She worried that an autism diagnosis could forever change the way the girl viewed herself and the expectations others had of her.
In any case, she said, there were plenty of other children in greater need. “Resources are not infinite,” Siegel said.
Zarembo comes pretty close to suggesting that the girls' parents bought a diagnosis from another place.
6. There is, and will continue to be, a push to diagnose fewer people with autism. This is mostly an economic issue: it's just getting too expensive to have all these autistic people and their families around clamoring for services. People are already being undiagnosed at pretty alarming rates-- kids who had 1-to-1 aides last years are less likely to get them now, people are finding new roadblocks to getting the insufficient help they were getting a couple of months ago.
Special education funding is under serious attack, at every level in the country. So are Medicaid and all government programs that fund services to the disabled. This is the crisis. The amount of money people are willing to spend is what matters-- not what the DSM says.
You can make a difference in this, and the biggest difference you can make is in your local schools, where your power as a voter and as a citizen voice is highest. Let your local schools and your state legislators know how important services for the disabled are, and that they will influence your vote. Services to the disabled get cut at the federal budget by changing formulas and priorities-- we can do a better job of letting people know that we can still see it happening, that it still hurts us, and that it is immoral.
7. Although I do not share his analysis of the situation, I respect Michael John Carley tremendously and ask that you read this action alert from GRASP:
In a report being published in tomorrow's New York Times, the DSM-V committee appears to be acting in consort with clinicians who believe there is a presence of “over-diagnosis” of spectrum conditions in the U.S. While the clinical world was merely adhering to the requirements proposed in 1994’s DSM-IV, the DSM-V committee inexplicably seems to want to reverse the clock back to 1993, simply because the social services, educational, and advocacy worlds are not yet able to accommodate the numbers of people who are on the spectrum. Oddly enough, we believe that the majority of the clinical world does not believe in problems of “over-diagnosis,” and that the DSM committee surprisingly represents a minority opinion (most, if not all members of the committee have worked exclusively with only the more challenged end of the spectrum). Lastly, the ideas of “over-diagnosis” are almost always heard through bitter, emotionally-unhealthy tones; revealed as theories that are usually the product of people too afraid to admit how dumb we all were prior to 1994.
Suspiciously, the DSM-V committee has released these changes one month after taking away the opportunity for us to make comments (through their website) to proposed revisions. In lieu of the means to write them, please instead call the DSM authors, the American Psychiatric Association, at 703.907.7300 and tell them that you object to these changes. Not only will tens of thousands of spectrumites—if not more—be at risk for going back to the days when we were thought of as rude, nervous, or incompetent; but equal numbers of spectrumites will happily be denied the services they need by financially-strapped agencies. Fiscal concerns cannot be invalidated, but this is not the answer.
It is very hard for many to understand how diverse, and how complicated the autism spectrum really is. But to have what should be the leaders of our clinical world (a) subtley waging a competition of suffering between opposite ends of the spectrum, by invalidating the negative experiences of one side, and (b) succumbing to such a dumbing-down of the autism spectrum, if not knowledge itself, is unconscionable. Please make that call.