Since The New York Times published an article last week suggesting that many people who currently are diagnosed with autism will not meet the new criteria that have been proposed for the next edition of the standard diagnostic manual, the internet has exploded with opinions.  My opinion is here, and I collected earlier reactions here.

John Elder Robison shares my belief that we need to focus more on resources than on diagnostic standards:

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 bad.

 

Click here to keep reading.

Jennifer Pinto-Martin, director of the University of Pennsylvania's Center for Autism and Developmental Disabilities Research and Epidemiology, demonstrates at CNN.com the perils of experts writing about a population they know only through their study of them.  She discusses only the concerns of parents and only services available to children.  And she makes the very  odd assumption that exactly what is intended by experts like herself is exactly what will occur:

The new, more restrictive criteria will combine three subgroups on the autism spectrum into one category and require a child to display more pronounced symptoms to qualify for a diagnosis. The effect may be that it would be harder for some mildly affected children to qualify for insurance to cover therapeutic and educational support services.

In the face of changing eligibility, support for children who function at the higher end of the spectrum will not be diminished.

The service needs of children who are at the higher functioning end of the autism spectrum are quite different from the service needs of those who function at the lower end of the spectrum, those who, for example, may have no language ability and exhibit self-injurious behaviors and frequent tantrums.

Allen Frances obviously got the message that his previous crazy rantings about autism being "a popular fad diagnosis" were ineffective and takes a more measured tone at The Huffington Post:

Severe, classic autism is clearly defined and absolutely unmistakable. But, at the milder end of its spectrum, autism has inherently fuzzy boundaries merging imperceptibly into many other childhood mental heath, behavioral, and learning problems and is also difficult to distinguish from the individual differences that are a normal and (even desirable) result of human variability. The sudden increase in rates of autism thus comes from the vagueness and easy elasticity of its definition at the milder boundaries of its spectrum. The pressure for services naturally stretches the boundary to include children with a heterogeneous array of problems that place them in vaguely defined territory, further and further away from classic autism. Any effort toward a more precise definition will narrow the spectrum and therefore seem to threaten the services that have been tied to the diagnosis.

So how can we accomplish both important goals -- i.e. achieve a more precise diagnosis of autism AND not deprive services for those who need them? I think the best solution is to decouple school services from the DSM diagnosis of autism. Instead of DSM diagnosis, the child's specific learning and behavioral problems should guide eligibility and individualized planning.

Children who now get inappropriately labeled autistic should lose the inaccurate diagnosis, but not lose the needed services.

At a live chat for Autism Speaks, Chief Science Officer Geraldine Dawson demonstrated (again) that she has not thought very hard about the needs of adults:

Comment From JD

I am an adult with Asperger’s. Although I am high-functioning and have a masters degree, I am unable to maintain work. I have had over 30 jobs, so I live on SSDI. It is unlikely that I would be diagnosed with the Autism Spectrum Disorder in DSM-V. So would I lose my Social Security Disability Insurance?

Hi JD, This is Dr. Dawson. I am sorry to hear that it’s been so hard for you to maintain work. It is unclear whether the changes in the DSM would mean that you would no longer receive a diagnosis of ASD. However, it is clear that your disability is interfering with your ability to function and you could benefit from receiving support and services, such as job coaching. We want to make sure that people like you, who are struggling with symptoms of autism, still receive the support and services you need under the new system. We will work hard on your behalf. Please join us in our advocacy efforts.

Yeah, Geri-- your "job coaching" is really going to help this guy with a masters degree.