People have been arguing about autism for a long time—about what causes it, how to treat it and whether it qualifies as a mental disorder. The controversial idea that childhood vaccines trigger autism also persists, despite the fact that study after study has failed to find any evidence of such a link. Now, psychiatrists and members of the autistic community are embroiled in a more legitimate kerfuffle that centers on the definition of autism and how clinicians diagnose the disorder. The debate is not pointless semantics. In many cases, the type and number of symptoms clinicians look for when diagnosing autism determines how easy or difficult it is for autistic people to access medical, social and educational services.

The controversy remains front and center because the American Psychiatric Association (APA) has almost finished redefining autism, along with all other mental disorders, in an overhaul of a hefty tome dubbed the Diagnostic and Statistical Manual of Mental Disorders (DSM)—the essential reference guide that clinicians use when evaluating their patients. The newest edition of the manual, the DSM-5, is slated for publication in May 2013. Psychiatrists and parents have voiced concerns that the new definition of autism in the DSM-5 will exclude many people from both a diagnosis and state services that depend on a diagnosis.

The devilish confusion is in the details. When the APA publishes the DSM-5, people who have already met the criteria for autism in the current DSM-IV will not suddenly lose their current diagnosis as some parents have feared, nor will they lose state services. But several studies recently published in child psychiatry journals suggest that it will be more difficult for new generations of high-functioning autistic people to receive a diagnosis because the DSM-5 criteria are too strict. Together, the studies conclude that the major changes to the definition of autism in the DSM-5 are well grounded in research and that the new criteria are more accurate than the current DSM-IV criteria. But in its efforts to make diagnosis more accurate, the APA may have raised the bar for autism a little too high, neglecting autistic people whose symptoms are not as severe as others. The studies also point out, however, that minor tweaks to the DSM-5 criteria would make a big difference, bringing autistic people with milder symptoms or sets of symptoms that differ from classic autism back into the spectrum

A new chapter
Autism is a disorder in which a child's brain does not develop typically, and neurons form connections in unusual ways. The major features of autism are impaired social interaction and communication—such as delayed language development, avoiding eye-contact and difficulty making friends—as well as restricted and repetitive behavior, such as repeatedly making the same sound or intense fascination with a particular toy.

The DSM-5 subsumes autistic disorder, Asperger's disorder, childhood disintegrative disorder, and pervasive developmental disorder not otherwise specified (PDD-NOS)—which are all distinct disorders in DSM-IV—into one category called autism spectrum disorder (ASD). The idea is that these conditions have such similar symptoms that they do not belong in separate categories, but instead fall on the same continuum.

Essentially, to qualify for a diagnosis of autistic disorder in DSM-IV, a patient must show at least six of 12 symptoms, which are divided into three groups: deficits in social interaction; deficits in communication; and repetitive and restricted behaviors and interests. In contrast, the DSM-5 divides seven symptoms of ASD into two main groups: deficits in social communication and social interaction; and restricted, repetitive behaviors and interests. (For a closer look at the changes, read the companion piece: "Autism Is Not a Math Problem". You can also compare DSM-IV and DSM-5 criteria for autism on the APA's Web site.)

The APA collapsed the social interaction and communication groups from DSM-IV into one group in the new edition because research in the last decade has shown that the symptoms in these groups almost always appear together. Research and clinical experience has also established that heightened or dulled sensitivity to sensory experiences is a core feature of autism, which is why it appears in DSM-5 but not in the preceding version. The psychiatric community has generally applauded these changes to the criteria for ASD.

What is in question is how many of the DSM-5 criteria a patient must meet to receive a diagnosis—too many and the manual excludes autistic people with fewer or milder symptoms; too few and it assigns autism to people who don't have it. Since the 1980s the prevalence of autism has dramatically increased worldwide, especially in the U.S. where the Centers for Disease Control and Prevention estimates that nine per 1,000 children have been diagnosed with ASD. Many psychiatrists agree that the increase is at least partially explained by loose criteria in DSM-IV.

"If the DSM-IV criteria are taken too literally, anybody in the world could qualify for Asperger's or PDD-NOS," says Catherine Lord, one of the members of the APA's DSM-5 Development Neurodevelopmental Disorders Work Group. "The specificity is terrible. We need to make sure the criteria are not pulling in kids who do not have these disorders."

7 Comments

1. 1. e_caroline 10:04 AM 1/30/12

   The problem is not in denying people a "diagnosis" but that a subculture of pseudo-professionals dabbling in the pseudo-science of "therapy"have taken it upon themselves to define every single human thought or behavior as something that is sadly abberrant and therefore desperately in need of their tender ministrations.... that just happens... to result in compensation for them.
   
   The problem with the therapy industry is that it engages in pseudo-science right up there with creationism when it comes to bafflewit circular thinking.
   
   The DSM-s are just collections of insurance reimbursement categories.... and do not map well onto the real world at all.
   
   They are the same sort of effort as Astrological readings in the newspaper... things written in such a way that it is easy to interpret the words to truthfully apply to some vast number of readers.
   
   The study of psychology of the human is a worthy and sometimes scientific endeavor. The world of the therapist... is a world of the unenlightened self-deluded pseudo-scientist... the out and out con-artist..... and the sociopath.
   
   The contrast is the same as we see in astronomy vs astrology.
   Astronomy is the science of describing and understanding the stars... astrology is a pseudoscience that starts in the same basic place as astronomy and then veers off the path of rationality.
   
   So too, is the study of the human mind... some small amount of science can be done in that study.... we call that the study of psychology.... then you get the therapy industry.. who start in the same place and then veer off the path and into the thicket and swamp that is irrationality.

   Reply | Report Abuse | Link to this

2. 2. AutismNewsBeat in reply to amdachel 11:50 AM 1/30/12

   Anne Dachel wrote: "The Baltimore Sun published this story this past July, 'We don't know enough about childhood vaccines--Researcher asks: Are 36 doses of vaccine by age 2 too much, too little, or just right?'"
   
   The "news story" was actually an opinion piece by an anti-vaccine "researcher".
   
   Meanwhile, bona fide researchers have come to an opposite conclusion.

   Reply | Report Abuse | Link to this

3. 3. LarryW 01:30 PM 1/30/12

   Whatever the definition used for autism, or autism spectral disorders, it should be based on medical/causal/treatment criteria.
   
   The autism community has been very successful is placing something called autism in the forefront, replacing ADD, ADHD, etc. as the mental disease du jour. And money has flowed into this problem. My sense is when lots of money for autism treatment and research is available, diagnosis of autism increases. Of course it must.
   
   Every practitioner wants to be paid, every kid who actually has an issue should be treated. If the choice is to label something autism and get treatment, or give it some other label, and the child not be treated and the practitioner not be paid, and you have a clear reason to label everything you can as autism. Likewise, if funds are tight, and money needs to be saved, then defining autism more narrowly will improve the bottom-line.
   
   It is a perversion of the pursuit of competent scientific study to allow access to money to determine diagnosis. These disorders, such as they are, must be diagnosed/labeled in such as way as to support the understanding of the disorders as well as determining the appropriate treatment. Science, not anything else, must be used to discriminate between patterns of mental activities.
   
   It is beside the point whether the new or old classifications exclude or include some people. The question must be are the classifications scientifically justified.

   Reply | Report Abuse | Link to this

4. 4. Teako 08:13 PM 1/30/12

   The over-diagnosis of autism in our school districts has sucked all of the money out of the gifted programs because by federal law you are essentially handcuffed from making any cuts for any economic reason at all. It even affects other programs that I believe are beneficial to autistic students and art is of special concern since autistic people have a tendency to see everything in "pictures". Temple Grandin video on TED comes to mind immediately.
   
   @amdachel Spamming this board about all you have accomplished. By any objective measure, the level of real Autism is way over-diagnosed.

   Reply | Report Abuse | Link to this

5. 5. melissa311 11:17 PM 1/30/12

   Please take a moment and consider signing and sharing this petition to preserve the availability of services for many individuals on the spectrum. It only takes a moment to sign and costs nothing to take a stand against this proposal that could hurt many: https://www.change.org/petitions/do-not-remove-aspergers-syndrome-and-other-autism-sub-types-from-dsm

   Reply | Report Abuse | Link to this

6. 6. alan6302 12:47 AM 1/31/12

   brain dead doctor syndrome

   Reply | Report Abuse | Link to this

7. 7. rjvg50 08:36 AM 1/31/12

   I am reading Kahnemann's "Thinking: Fast and Slow" and I finally 'get' anti-vaxers and other science deniers. The intrinsic appeal of a causal narrative (usually only slightly useful but mostly completely wrong)is as appealing as a crack pipe. Deniers run constantly in System 1 (fast) cognition mode where their mental efforts end just before introspection intervenes. The irrational marriage of ego and a 'just so story' defeats any effort to engage that brain's owner in System 2 (slow, rational) thinking. Anti-vaxers live on in the comments as System 1, copypasta-fast-draw artistes. Bringing up an 'false equivalence' article in the Baltimore Sun Sunday Style section in a comment in SA is choice.

   Reply | Report Abuse | Link to this