The New DSM Proposed Definition of Autism and What It Means to Us?
There’s been a lot of talk about how the upcoming DSM V definition of autism will affect people on the spectrum. Last week’s news stories really got people talking, especially when one doctors suggested 75% of today’s Asperger population would not qualify for a diagnosis under the new definitions.
Let me say at the outset, I think that 75% statement is inaccurate, and a substantial over-reaction to the available data.
Many in the community were already upset at the DSM V proposal to combine the various autistic conditions under the single category of autism spectrum disorder. Any change in diagnostic terms or definitions is worrisome to those who depend on receiving diagnostic-specific supports from schools, social service agencies, or health care providers.
In the following paragraphs, I’d like to look at the proposed definition of ASD, and then consider what it may mean for those on the spectrum and their families.
This is the proposed definition of ASD. For a person to be diagnosed, they must meet criteria A, B , C, and D.
A. Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays, and manifest by all 3 of the following:
- Deficits in social-emotional reciprocity; ranging from abnormal social approach and failure of normal back and forth conversation through reduced sharing of interests, emotions, and affect and response to total lack of initiation of social interaction,
- Deficits in nonverbal communicative behaviors used for social interaction; ranging from poorly integrated- verbal and nonverbal communication, through abnormalities in eye contact and body-language, or deficits in understanding and use of nonverbal communication, to total lack of facial expression or gestures.
- Deficits in developing and maintaining relationships, appropriate to developmental level (beyond those with caregivers); ranging from difficulties adjusting behavior to suit different social contexts through difficulties in sharing imaginative play and in making friends to an apparent absence of interest in people
B. Restricted, repetitive patterns of behavior, interests, or activities as manifested by at least two of the following:
- Stereotyped or repetitive speech, motor movements, or use of objects; (such as simple motor stereotypies, echolalia, repetitive use of objects, or idiosyncratic phrases).
- Excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance to change; (such as motoric rituals, insistence on same route or food, repetitive questioning or extreme distress at small changes).
- Highly restricted, fixated interests that are abnormal in intensity or focus; (such as strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).
- Hyper-or hypo-reactivity to sensory input or unusual interest in sensory aspects of environment; (such as apparent indifference to pain/heat/cold, adverse response to specific sounds or textures, excessive smelling or touching of objects, fascination with lights or spinning objects).
C. Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities)
D. Symptoms together limit and impair everyday functioning.
As you can see, the ASD definition above is very similar to, and clearly derived from, the DSM IV definitions it will replace. Given its similarity, I think it’s an over-reaction to suggest that any large portion of the current diagnosed population would “lose their diagnosis.” People with Asperger’s or PDD NOS will have to obtain a new diagnosis if the depend on it for services, but I don’t think that will be a problem.
The primary mission of any clinician is to help others. That belief make me think those clinicians will be looking at today’s Asperger and PDD NOS people and thinking, “What do I have to do to help this person?” Most clinicians are on our side, after all.
All of the criteria remain subjective. That means clinicians still have great latitude in defining phrases like “symptoms impair everyday functioning.” A clinician who diagnosed a person with an ASD condition under DSM IV is not at all likely to withdraw that diagnosis today. I do think there will be upheaval, schools and others send people with Asperger or PDD NOS diagnoses are sent back to clinicians for re-evaluation under the new guidelines.
I have no doubt that process will be troublesome, costly, and time consuming but I doubt very much it will result in people who had a disability diagnosis coming out with nothing.
A doctor who thinks you or your son is on the spectrum is not likely to revise that opinion, just because the wording of the definition changes. My experience of human nature reassures me on that point, even though I know insurers and school districts are pushing in the other direction.
In my opinion, the biggest change in the new definition is the addition of a severity grade. Here is how they define level 1, the least severe affect:
A – Without supports in place, deficits in social communication cause noticeable impairments. Has difficulty initiating social interactions and demonstrates clear examples of atypical or unsuccessful responses to social overtures of others. May appear to have decreased interest in social interactions.
B – Rituals and repetitive behaviors (RRB’s) cause significant interference with functioning in one or more contexts. Resists attempts by others to interrupt RRB’s or to be redirected from fixated interest.
Once again, the definition is very open-ended and subjective. For example, the word “supports” could be taken to mean many different things. Once again, I think clinicians will retain wide diagnostic latitude. To me, that suggests that most people who have a diagnosis, will have an ASD diagnosis under the new definition. And a kid who is diagnosed on the spectrum today, will still be ASD next year when this change takes effect.
I do understand why people express concern, when they say words like that might be interpreted very narrowly for the purpose of reducing the number of individuals diagnosed. However, I do not think that was or is the intent of the framers of the ASD definition.
All that aside, I do think people who receive services face a real threat of interruption or disruption when this change takes place. Not because they “won’t have a diagnosis,” or for any clinical reason. Rather, I think people with autism are at risk to lose services because ignorant or ethically challenged or financially pressured bureaucrats will use the diagnostic evolution as justification for changes that may benefit some other group at our expense.
Many school are already using any loophole they can find to escape IEPs and their obligations under the spirit of the law. State social service agencies can be even worse. A big change like this could make that kind of treatment easier for them to justify and perpetrate, and that is bad.
For that reason, I urge all of you to speak up before your government officials, school boards, and elsewhere to make sure they know that a change in diagnostic wording does not in any way change our need for support.
I look forward to the day we have solid tests for autism, but even then, I am sure the fight with social services and schools will continue. Because it all comes down to money, in the end. Our various government agencies – both State and Federal – have not yet made the funding choices to fully support the population we have identified today, let alone the folks who are yet to be diagnosed.
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John Elder Robison is an autistic adult and advocate for people with neurological differences. He’s the author of Look Me in the Eye, Be Different, Raising Cubby, and Switched On. He serves on the Interagency Autism Coordinating Committee of the US Dept of Health and Human Services and many other autism-related boards. He co-founded the TCS Auto Program (A school for teens with developmental challenges) and he’s the Neurodiversity Scholar in Residence at the College of William and Mary in Williamsburg, Virginia and an advisor to the Neurodiversity Institute at Landmark College in Putney, Vermont.
The opinions expressed here are his own. There is no warranty expressed or implied. While reading this essay will give you food for thought, actually printing and eating it may make you sick.
The opinions expressed here are his own. There is no warranty expressed or implied. While reading this essay will give you food for thought, actually printing and eating it may make you sick.
Thanks for your careful analysis of the proposed changes. I very much appreciate this article and will be on the lookout for your book.
And if you are afraid to have your Autism label taken away…that’s strange that you’re not fairly confident in it yourself. I would like to have Bipolar II be removed on the DSM V…but that’s dumb, because that doesn’t mean it’s actually gone away. I would just fall under some different category, like unipolar depression or cyclothymia. Someone’s Autism might fit a different definition but it’s not gobbled up into a hole of nothingness where it therefore ceases to exist. It’s all just in the labels and the coding. Treatment shouldn’t come down to splitting hairs…and if you’re in the hospital, nobody’s gonna say, “OH! This is Bipolar I not Bipolar II!” You obviously did something to end up in the hospital that would have to get treated. Schools would also figure this out with an Autistic child’s IEP…eventually, at least.
This is a good post. A lot of mental illnesses are getting reshaped and redefined under the new DSM. It’s not just Autism, and it does come down to money in some cases and in some ways. But that doesn’t mean it’s not a struggle to get services for other metal illnesses (or even physiological illness) increasingly as time goes on because of insurance reasons, etc. Like, the amount of days for addiction treatment approved in most companies has been cut from 28 days. How are people truly going to get well if they are only receiving fragments of care? It is a question for every type of illness facing our health care system…
I’m not sure, but I think I might be autistic. (No, this is not a joke or troll post. I’m being serious.) A recent psych battery, intended to determine whether I had ADHD, showed that, according to the DSM-IV TR definitions, I do have some of those symptoms but I also may have some form of ASD. Those results were unclear. But, if these are to be the newly accepted criteria, insofar as I’m reflected in the written report I received from the doc, it seems like I would be counted, except that I doubt that I meet criterion B’s sub-criteria 1 and 2. I realize I would need to be “tested” for it, but I’m basing this thought on not only my knowledge of myself, but also the reports given to me by the psychologist who did the original battery for ADHD.
I’m not sure how I feel about the labeling problem, in itself… I think something that’s being ignored is that, while my diagnosis is somewhat ambiguous based on the “current” definitions, these new criteria would almost definitely label me as having some form of ASD. Thing is, when I was a kid, I had the same symptoms, though they’ve been amplified by my being expected to conform to certain aspects of a professional life. But, to my knowledge, no professional has ever pinned down this label. You do have to take into account that I went to public school in a small town in Florida, and many of its attributes were substandard, at least by the presently accepted standards. Point being: I completely understand and agree that those who would not be included in these new definitions should not be completely cut off from treatment… on the other hand, should those of us who would be included under the new definitions be hung out to dry?
(I do want to make clear that I am new to this, and I am not a professional, nor do I claim that my knowledge of the subject is anywhere near complete. These are simply a few concerns I have, based on my own experiences and not a great deal more.)
I don’t really like the definition. The way they word it, it seems like the “deficit in communication” refers only to under communicating and not over communicating. My little brother most definitely has Asperger’s, and he’s actually rather talkative and social. He just doesn’t understand social mores. He doesn’t mind talking at me for an hour about which Pokemon have the best stats despite my repeated statements of disinterest, for example.
I loved your book. Just sayin.’
Thank you for your observations. I don’t know how to say it any better than that so I’ll just leave it at that.