Is the diagnosis of Asperger’s Syndrome — a mild form of autism mostly diagnosed in boys — heading the way of the dodo bird? A new article in the New York Times suggests that the new revision of the diagnostic manual — the DSM-V — is likely to do away with the diagnosis.
How can you just delete an entire diagnosis and do away with a diagnostic label that hundreds of thousands of clinicians use everyday and millions identify with? If you’re the American Psychiatric Association, the folks behind the latest DSM revision, you can pretty much do anything you want.
Before I get to Asperger’s, I have to note what’s really cringe-worthy in this article — how it completely misrepresents how mental disorders are diagnosed in practice today. Take this explanation, for instance:
Another broad change is to better recognize that psychiatric patients often have many health problems affecting mind and body and that clinicians need to evaluate and treat the whole patient.
Historically, [Dr. Darrel A. Regier, research director at the American Psychiatric Association] said, the diagnostic manual was used to sort hospital patients based on what was judged to be their most serious problem. A patient with a primary diagnosis of major depression would not be evaluated for anxiety, for example, even though the two disorders often go hand in hand.
Similarly, a child with the autism label could not also have a diagnosis of attention deficit hyperactivity disorder, because attention problems are considered secondary to the autism. Thus, they might go untreated, or the treatment would not be covered by insurance.
I’m not sure if this is a bad translation of what Dr. Regier was trying to say or what, but the suggestion that a person is only diagnosed with a single diagnostic label (and can only be treated for a single disorder at a time) is simply untrue (and a ridiculous assertion). People are diagnosed — and treated — every day with more than one disorder. Indeed, there are thousands of children who carry both an ADHD diagnosis and an autism diagnosis — the two are not mutually exclusive (nor have they ever been). So while maybe back in the 1970s the DSM was used in the manner Dr. Regier describes, it hasn’t been used in that manner in modern practice for decades.
But getting back to the core reason why Asperger’s Syndrome, as a diagnosis, may be going away is because the new DSM is apparently going more toward a continuum approach for disorders. It actually already has this capability in the current edition, but it’s not a part of every diagnosis (for instance, you’ll find it for major depressive disorder, but not for things like ADHD). I believe the new DSM will ensure that every disorder is treated equally in this way — you can have mild ADHD, moderate ADHD, or severe ADHD.
In the same manner, you can have a mild form of autism and it’ll just be called “mild autism” — not Asperger’s.
I think the effort to make the diagnostic manual of mental disorders more internally consistent is a needed change. But doing away with well-used labels like “Asperger’s” is perhaps prematurely unnecessary; why couldn’t we use both labels to describe this form of mild autism? Certainly exceptions to the consistency can be made (and will have to be made anyway, since not every disorder will fit nicely into any classification system one could design).
While not ideal, allowances should be made during the transitional edition of this mainstay of mental disorder diagnoses to ensure that everybody embraces it — both patients and professionals alike. It could be as simple as including the phrase, “(also known as Asperger’s Syndrome)” next to the “mild autism” diagnostic criteria.
Read the full article: A Vanishing Diagnosis for Asperger’s Syndrome
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Links to This Article
News Round-Up:November 2009 2nd Edition « The Amazing World of Psychiatry: A Psychiatry Blog (11/8/2009)
DSM-V Asperger Diagnosis « Aspergers et al… Blog (12/4/2009)
11 Comments to
“Bye Bye Asperger’s Syndrome?”
As the father of a 20 year-old Asperger’s son, my initial response is that there’s nothing “mild” about challenges we face. Because Asperger’s manifests itself differently in every individual, we still don’t know if our son will be able to complete college, hold down a job in a normal setting, or even live independently. I realize that families struggling with more profoundly disabled children might say “we only wish we were thinking about those things,” but each location on the autism spectrum brings its own unique opportunities and challenges. It’s just my opinion, but I think designations of mild, moderate and severe don’t do justice to the unique nature of the various autism spectrum disorders, and suggests that Asperger’s is “the same, only less so.”
Autism is considered a ’spectrum’ disorder for a reason. It’s a broad lable encompassing many different types and levels of symptoms. When a child’s condition is unknown, they’re usually labled as Autistic because it covers such a wide variety of behaviors and aspects. Asperger’s, while logically it does fall under the Autism ’spectrum’, is a specific subset of symptoms and should remain a classification to aid in treatment for the specific symptoms. In fact, I think more subsets should be broken out from under the Autism ’spectrum’ which is used mainly to give a diagnosis when the symptoms don’t fit anything better, not as a diagnosis in itself. In fact, why not just do away with Depression, Mania, Bipolar, ADHD, and Oppositional Defiant Disorder to name a few and put them all under an umbrella called Behavior Spectrum Disorder?
Hi
A couple of months ago my 2 and have year old son was diagnosed with Asperger’s. I have now join a team that has been trained by a lady that has triplets with autism… My question is to all… if this is a chemical imbalance in their diets what do you feed them?… What can i give my son that is save and will help him clean his system?
You should post this piece over at USC’s Reporting on Health. http://www.reportingonhealth.org/
I agree with the article. I think that they should include the common labels that people use to identify such disorders so that people do not get even more confused as to what they themselves (or others) have and how to get help. I don’t see a lot of help for “mild autism”, but I do see a lot more when it comes to “Asperger’s Syndrome”. I also think that people today stereotype the word “autism” to mean what is now commonly known as classic autism. People may think: “I can talk. I don’t flap my hands and bang my head. I’m not autistic.” I think less people will get the help they need because of all the hype over the word “autism” and what people think it means. I think a label like Asperger’s may help ease people into getting help, as well as letting others know what help they may need.
Remember, the basis for removing the Asperger Syndrome (AS) diagnosis is the overwhelming research and evidence for many years proves there is no significant difference between AS and high-functioning autistic disorder. By removing the AS diagnosis and calling it “autism” it will give access to untold numbers of children through adults to needed services previously denied to them. Per Patricia Howlin in Autism and Asperger Syndrome: Preparing for Adulthood, 2nd edition, 2004: “Asperger Syndrome is often referred to as a ‘mild form of autism’. Nothing could be further from the truth…A recent follow-up study by Gillberg and his colleagues, for example (Billstedt 2003), has indicated that quality of life ratings for more able adults with autism are actually lower than for those with moderate to severe intellectual abilities.”
I agree with the comments that “mild” autism greatly misrepresents the challenges, impediments, and frustrations of people, like my 19-year old son, who have Asperger’s. Similarly, “high-functioning” is also a deceptive description of these people. High-functioning compared to classic autism, yes. But compared to neurotypical people of the same age, people with Asperger’s are not functioning highly whatsoever. Though brilliant, my son is unable to maintain even a community college courseload, even though his ACT test scores alone would get him into most any 4-year institution of his choosing. He is isolated (except for family), cannot manage his time well enough to keep a work or school schedule, has gastrointestinal and sleep disorders, is completely disorganized and his anxiety can be crippling. He may well be dependent well into adulthood–hardly high functioning. Lumping Asperger’s into ASD ignores the fact that Asperger’s can be distinguished from other autism disorders and a diagnosis of Asperger’s carries unique attributes which make a diagnosis possible. Certainly, there is a range of impairment among the Asperger’s population, but that doesn’t negate the value of the diagnosis.
Asperger’s is obsolete as a diagnosis, and has been ever since we figured out that most people now diagnosed with Asperger’s are also diagnosable with DSM-IV Autistic Disorder–even more annoying because Autistic Disorder is supposed to take precedence. There’s no good reason to keep the label when it’s redundant and serves no purpose. The simpler the labeling system can be while keeping its meaning, the better.
In addition, there’s a fairly arbitrary split between people diagnosed “Asperger” and high-functioning people diagnosed “Autism”. The big difference between these two categories is that the people with Asperger’s had speech before three (though it was probably unusual speech), and the people categorized Autism usually did not. In the high-functioning group, they almost universally catch on to speech by age five–after which they are, especially in the teen and adult years, functionally identical to Asperger’s.
The problem is that this difference in speech acquisition isn’t the only difference that you can find among people with HFA/Asperger’s. It’s just the only difference that people split the two groups apart by. There are other differences–significant ones–that do not fall along the lines of the HFA/Asperger’s split. For example, interest in socializing ranges from clumsy, insistent interaction to complete indifference within both categories. IQ ranges from borderline to genius in both groups. Adult prognosis ranges from “needs constant supervision” to “raising a family and holding a highly-paid job”. And while people diagnosed Autism tend to be lower-functioning on average, this could just be because stereotypes prompt Asperger’s as a diagnosis in an individual who fulfills Autism criteria–because the individual seems intelligent. (Asperger’s is stereotypically associated with intelligence.)
It’s about time we got rid of the confusing Autism Spectrum, as it now is. When there’s enough diagnostic confusion that most people diagnosed Asperger’s could be diagnosed Autism, and when fully half the Pervasive Developmental Disorder diagnoses are PDD-NOS, something has to be done.
We’re just going to have to face it: Autism is a diagnosis with huge variations from individual to individual, and while knowing “autism” about somebody might tell you some things about them, you’re going to have to look at their specific case. Standardized treatment according to the diagnosis doesn’t cut it now, and it won’t be any more useful once they merge the spectrum; but at least we may be forced to consider each case individually, as we should’ve been doing all along.
Since 1989 I have worked with thousands of teens. Call it what you will — label at however you might choose — I would love to know what has caused the pronounced increase in young people with these characteristics.
I have had more teens with Asperger-like attributes in the last four years than in the previous sixteen combined!
I’m not surprised this has been a controversial article. There seems to be quite a divide between those who would applaud the amendment to the DSM on the basis that a classification of mild autism rather than Aspergers might provide access to services previously denied to people with Aspergers, and those ‘at the coal face’ who identify with the challenges associated with being a parent of a child with Aspergers. Whether the challenges can be said to be unique to Aspergers might be a matter of contention in itself, but at a base level the different classifications are an aid to gaining some perspective on how to cope.
I query how readily those who have been diagnosed with, or have children previously diagnosed with Aspergers will abandon the nomenclature. We have aspergers in our family, and I suspect it will be a good while before we do away with our ‘Aspergers support groups’. My teenage cousin has adopted the nickname of being an ‘Aspie’ as do many of his peer group, and I doubt the collective will quickly revert to calling themselves ‘mild auties’.
“Indeed, there are thousands of children who carry both an ADHD diagnosis and an autism diagnosis — the two are not mutually exclusive (nor have they ever been).”
The diagnosis of autism is exclusive of a diagnosis of ADHD.
Diagnosis criteria for ADHD:
http://www.turnertoys.com/ADHD/APA_diagCriteria.htm
“E. The symptoms do not occur exclusively during the course of a pervasive developmental disorder, schizophrenia, or other psychotic disorder and are not better accounted for by another mental disorder (eg, mood disorder, anxiety disorder, dissociative disorder, or personality disorder).”
Many people have the two diagnosis, but this is beucause the therapists don’t follow the DSM
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Last reviewed: By John M. Grohol, Psy.D. on 4 Nov 2009
