Preemptive controversy surrounds new autism diagnostic guidelines

From the New York Times:

Proposed changes in the definition of autism would sharply reduce the skyrocketing rate at which the disorder is diagnosed and may make it harder for many people who would no longer meet the criteria to get health, educational and social services, a new analysis suggests.

The definition is under review by an expert panel appointed by the American Psychiatric Association, which is completing work on the fifth edition of its Diagnostic and Statistical Manual of Mental Disorders. The D.S.M, as the manual is known, is the standard reference for mental disorders, driving research, treatment and insurance decisions.

The study results, presented on Thursday at a meeting of the Icelandic Medical Association, are still preliminary, but they offer the latest and most dramatic estimate of how tightening the criteria for autism could affect the rate of diagnosis. Rates of autism and related disorders like Asperger syndrome have taken off since the early 1980s, to prevalence rates as high as one in 100 children in some places. Many researchers suspect that these numbers are inflated because of vagueness in the current criteria.

“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 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.

I have no idea what to make of any of this.

I have long wondered if the dramatic rise in autism diagnoses, which has in turn helped fuel anti-vaccine hysteria, was related to vagueness in the diagnostic criteria, and whether other disorders might better account for the symptoms of many patients labeled as having an autism spectrum disorder (ASD).  Developmental pediatrics is not my specialty, however, and so I’m reluctant to pronounce with any authority on the subject.  The senior partner in my office is board-certified in developmental pediatrics, to which his practice is almost entirely limited at this point.  From what I’ve informally observed after reading a good number of his evaluations, he is very careful about distinguishing an ASD from another diagnosis that may be more appropriate, such as an anxiety disorder or obsessive-compulsive behaviors.

Looking at the “before” and “after” criteria, I’ll admit to being a bit perplexed as to what changes are so monumental as to “put an end to the autism epidemic.”  Here they are before and after.  (The criteria are lengthy, and do not lend themselves to being inserted in toto.)  The new guidelines are more streamlined, and in order to make the diagnosis more of them must be present.  The only change that seems particularly stringent is this last one:

D.         Symptoms together limit and impair everyday functioning.

There is no mention of everyday functioning in the old criteria.

Because the study is preliminary, and the results were presented at a meeting rather than in published form, I cannot look at its methodology and get a sense of whether it was well conducted.  As such, I’m reluctant to come to any particular conclusion.  If I were to speculate, I would guess that those who might be excluded from an ASD diagnosis are those on the less severe side, whose degree of impairment is milder and whose diagnosis may have been less clear.  Conversely, I have a hard time imagining a scenario where a moderately or severely affected individual would meet the criteria from before but not now.

If these new criteria streamline and clarify the diagnosis of autism, then I am tentatively in favor.  It does rather raise the question of how genuine a phenomenon the autism epidemic was in the first place, however, and whether the hype and anxiety were ever justified.

Russell Saunders

Russell Saunders is the ridiculously flimsy pseudonym of a pediatrician in New England. He has a husband, three sons, daughter, cat and dog, though not in that order. He enjoys reading, running and cooking. He can be contacted at blindeddoc using his Gmail account. Twitter types can follow him @russellsaunder1.


  1. In addition to excluding kids with “mere” Asperger’s, I think what they are trying to do is get kids with regular old developmental disorders excluded. First, note that the first section of the proposed revision states specifically excludes those problems due to developmental delays (so someone who doesn’t develop peer relationships only because they are developmentally delayed can no longer be counted). They also must meet all the social deficit criteria, whereas previously it was two of four. Also, lack of language is qualifying in the DSM-IV, but no the revisions. My cognitively disabled kid is happy, social, and emotionally responsive, but could meet the first set of criteria. He’s non-verbal, has stereotyped movements, and doesn’t form proper peer relationships (because of his mental retardation). Due to psychomotor impairments, he doesn’t make appropriate gestures and body postures. He could not meet the second set of criteria, which specify a stricter set of social impairment criteria and explicitly specify that developmental delay cannot be the cause. His non-verbality wouldn’t count.

    This will hit parents of kids with developmental delays hard. An autism diagnosis gets you far more therapies and services than does a developmental delay diagnosis. So lots of parents try to get an autism diagnosis for their developmentally delayed kid. Autism has been more studied and also has more lobbying power. Certain therapies have been proven to work with autism, and are supplied by schol districts, but no one has studied them in developmental delays, so a kid with developmental delays gets denied those therapies.

    • So the outrage is because of societal factors — the science may very well be sound, but it causes real problems for kids.

    • Thanks for sharing a perspective that I hadn’t considered, and for parsing the revisions more carefully.

      In an ideal world, the right answer would be both more diagnostic specificity and appropriate funding for services regardless of the diagnosis associated with the delay. However, I can see how this change would have an adverse impact on a vulnerable population.

  2. For what it’s worth, my therapist wife treats mainly adolescents and she believes that autism and bipolar disorder are being very much overdiagnosed right now.

    • can totally see that. Depression is a disease that might benefit from less diagnosis, as the pharmaceutical treatment appears to be worse than the disease.

      • It depends. The problem is that if an anti-depressant is too low, it could give a person enough energy and focus to harm themselves. Too high, and it can lead to lethargy.

        But I’m one (of many) who benefits immensely from “pharmaceutical treatment”.

        • This is one of those open secrets — the medication for depression tends to suppress creativity/intelligence… It’s a big reason why depression researchers don’t take the drugs.

          I’ll agree that you use pharms if you’ve got someone likely to kill themselves… (any tool in a storm?)

  3. ex child therapist here. Autism is way over diagnosed. So are bi-polar in kids and ADD. All those problems exist but the use of trendy diagnoses is something the child MH field has not really addressed. The diagnoses that get over-diagnosed all are biology based as opposed to family problem based.

    In my experience one of the underlying reasons for parents to want these diagnoses was to take away a feeling of blame for the child’s problems and to avoid dealing with family issues like substance abuse or marital conflict. I had a few cases like this myself and have seen others like it. As a parent of child with a physical/genetic problem feeling blame is a normal thing even if there is nothing anyone could have done. Family dynamics can be convoluted and twisted so it is often easier to blame a kid then deal with the underlying problem. However a good diagnosis is key to treatment.

    Needing a diagnosis to get decent treatment is an issue but over diagnosing is a terrible solution.

  4. I completely understand the struggle for services. I have met numerous people who have been desperate to get an Autism diagnosis because of the services available. Not just the diagnosis, but the timing of the diagnosis can be key. It is not uncommon that the earlier a diagnosis happens in a person’s life the more services that are available. I have seen many people disappointed because their diagnosis came a little t0o late.

    I must echo the call for better services available for people (not just children) with developmental delays. It is a sad world when people are consciously trying to get misdiagnosed in order to get what they need for a fulfilling life.

    • A person I know is “dual diagnosis” — he’s schizophrenic and has mental retardation. Since he’s also pretty low on the socio-economic scale, he hasn’t gotten any help other than drugs (which help somewhat when he takes them). I’ve heard that CBT works fairly well for schizophrenia, and I’d love for him to get into such a program, but don’t see it happening (especially with Gov. brown chipping away at the mental help programs we do have).

      • Ah yes, the trifecta; mentally ill, experiences intellectual/developmental disability and lives in poverty. A difficult situation indeed and he will undoubtedly struggle for the rest of his life.

        People with co-occurring disorders (aka dual diagnosis, which ever you prefer) are in a spot when it comes to diagnosis as well. As sad as this is going to sound, there is a sort of competition between which is the prevalent; cognitive disability or mental illness. When it comes to getting services you want the developmental disability to be the most dominant. There are more comprehensive services for those who experience developmental disabilities than there are for the mentally ill. From my experience, people in the DD field are proficient in modifying treatments and will have more to offer than professionals in the MH field who are not familiar with the eccentricities of DD. Finding someone in MH that has a background of working with DD is like a needle in a haystack; however, finding someone in DD that has a history of working the co-occurring disorders is a little easier. If you ever find a professional who is an expert in both hang on to them. Clone them if you can; they are a rare breed.

  5. “The Sopranos” made an interesting point on this in an early episode. They took the son (was AJ his name?) in for testing for ADHD and he came back with some symptoms but not enough to warrant a diagnosis. It was something like 7 out of 12 were required and he had 6. To which Tony responded something along the lines of: “So he’s sort of sick?”

    I work with young children and fear the tendency towards overdiagnosis. I’ve also seen young children with real needs get real benefits from the proper support that can only come with a diagnosis. Ideally, a behavioral diagnosis is based on data culled from a variety of sources to give as comprehensive a picture as possible. And, most importantly, the goal of the diagnosis is to get the child (or adult) the support necessary to be as successful as possible. Unfortunately, this is not always the case…

    • I got treated for ADD, when what I really had was “bored smart kid” syndrome. And my parents pushed for it, because it basically turned me into a “good kid” zombie, who would do whatever was asked.

      Some of my teachers, god save their souls, tried to tell my parents that I was fine without the meds (or that they preferred me whispering on-topic comments in class)

  6. Dear Sir,
    The “hype” and “anxiety” are only “justified” if you happen to have an autistic child. I know, let’s cure the skin cancer epidemic by changing the criteria for melanoma.

    • Hello, Irene.

      If the criteria for diagnosing skin cancer were so non-specific that patients with benign lesions were being classified and treated as though they had melanoma, that would be undeniably problematic. The point of revising the diagnostic criteria for autism is not, from what I gather, to exclude those who legitimately are autistic (as I gather your child is), but to make sure patients whose problems are more accurately ascribed to another diagnosis are not inappropriately placed on the spectrum. Whether or not it pertains to you, there is indeed a great deal of hype and anxiety surrounding the epidemic-level numbers of autism diagnoses, and if inexact or poorly-worded criteria are part of the reason why that is so (in addition to poor funding for other developmental delays) then it is indeed a problem worth addressing.

      • Irene, I couldn’t have said it better. Actually, I found this message board looking for more conditions that “they” are tightening the diagnosing criteria for. My son has Asperger’s (according to the old DSM) with severe sensory issues. (He is currently being evaluated for ADHD by the school as well.) Since he was born we knew something was not right. Colic they said, he must have just gotten startled when you sang him happy bday at his first bday they said, he doesn’t make friends because he’s an only child they said, he is just eccentric they said, he is just an excited boy they said, etc. That ended at the age of 7 when his pediatrician replied to me that yes, he suspected Asperger’s for some time but knew I didn’t have the insurance to do anything about it. (How dare he!) Then it all started with a Psychologist who said to make an appointment with a specialist. We waited over 3 years for our appointment with a Pediatric Developmental Specialist who saw my 10 year old son for 10 minutes, counted up my answers on a form and turned to me and said, “Your son is not autistic according to the new rules. He just has anxiety”….have a nice day…. I had trouble getting services for my son before (dropped a distric lawsuit and moved out of the district after they retaliated against BOTH of my children) and now I know we do not stand a chance. Without going into details and long explanations, I really feel that certain conditions are becoming an epidemic and tightening the criteria and/or the data isn’t solving any of the problems. And the parents may not be to blame for being dealt this card and becoming frustrated because there is NO help and NO answers. Maybe that is why the divorce rate is so high for parents of autistic children. ?? Anyway…Another example is the mitral valve prolapse diagnosis. Too many people were beginning to get diagnosed with that so they are now tightening the criteria. (crazy right?) I know because I am suffering terrible and I am getting blown off by doctors because it isn’t “severe enough” according to their new criteria to obtain any help. Is this really evolution? Or is something else (cell phones, pollution, who knows) really the cause to these conditions, most importantly all these developmental delays and “autistic” spectrum disorders. Are changing the numbers really going to put an end to the epidemic or just make us more conditioned to believe that the behaviors/emotions of these children are acceptable? Are they really acceptable? Is this really acceptable? More research is needed….

  7. From a behavioral standpoint, I think the current DSM codes will look as ridiculous as phrenology in a few years. Autism is such a facile diagnosis, encompassing a host of symptoms. We’re just now starting to get a handle on the entire spectrum of disorders. The parents of these children are the only people who really have a clue about what’s going on with their child. They’re usually the last people consulted.

    From the stats I’ve seen, I’m starting to believe there’s some aggravating external factor. What we now call Autism will come into focus, but not until we’ve got some meaningful etiology. The current state of affairs is just awful, as in the bad old days, when PKU wasn’t understood. It’s just a guess on my part, but I have this odd sense we’re going to uncover some condition very much akin to PKU related to what we’re now calling Autism.

Comments are closed.