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 NY Times and ABC News stories really got people talking, especially when one doctor suggested that 75 percent 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 percent statement is inaccurate, and a substantial overreaction 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:
1. 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,
2. 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.
3. 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:
1. Stereotyped or repetitive speech, motor movements, or use of objects (such as simple motor stereotypies, echolalia, repetitive use of objects, or idiosyncratic phrases);
2. 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);
3. 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);
4. 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 overreaction 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, ethically challenged, or financially pressured bureaucrats will use the diagnostic evolution as justification for changes that may benefit some other group at our expense. Obviously, not every government official or service provider will think this way, but some surely will, and we need to both be on guard and continue to raise awareness about this risk.
For this is the real threat to the autistic population, from the DSM changes. "Losing a diagnosis" is a red herring.
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 highly undesirable.
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. Even if the diagnostic codes numbers change, their obligation to provide educational, social, medical and therapeutic services should remain unchanged.
If the government chooses to require people to obtain a new diagnosis to suit the new DSM, I absolutely feel it is their agencies' responsibility to pay for same, and continue services until obtained.
That is a point we must make very clear - lest this because a barefaced resource grab when the change takes effect.
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 departments - 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.