Growing Up with Autism: Life Transitions, Part 2

Note: This is the second of three posts reporting on the Weill Cornell Autism Research Project (WCARP) Autism Symposium 2012 held at Weill Cornel Medical College in New York City on Friday, May 11, 2012.

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Anxiety animates autism spectrum disorders, both for autistic persons, and for their familes. For parents of kids on the spectrum a great deal of anxiety revolves around a single question: Who will take care of my beloved autistic child (or children) after I'm gone?  

Dr. Linda Meyer, the Executive Director of Autism New Jersey, raised this wakes-you-up-in-the-middle-of-the-night question when she presented during the second panel of the Weill Cornell Autism Research Project (WCARP) Autism Symposium earlier this month.

Meyer: Facing the unpredictability of the ASD
developmental trajectory.

Answers to this question are often complicated by the unpredictable developmental trajectories of kids on spectrum.  Meyer cited research that notes that about 47% of children who presented with autism resolved into some sort of passing version of normalcy, while the others, more than half, showed little or no improvement.

At the heart of the problem for the parents of autistic individuals is a model (some would say "fantasy") of individuality that imagines that we are all self-sufficient and will grow up into an adulthood where we'll make it "on our own" and even make it well enough on our own (albeit typically with a partner) to reproduce others who can make it "own their own."

To a great extent the American fantasy of individualism and its companion (paired romantic happiness) haunts those of us with kids who may or may not "make it after all."

"advocacy as anxiety's antidote": Organizations like Autism New Jersey work to mitigate this flawed version of adulthood by advocating for adults on the spectrum, for their families, and for others who care for them.  Meyer cited the work of COSAC (Center for Outreach and Services for the Autism Community) in their 2006 report "Meeting the Needs of Adults with Autism: A Blueprint for the Future"and the more recent National Autism Center's "National Standards Report" as part of the critically-important planning and advocacy work that may help to pave the way to services for enormous cohort of autistic children who will grow into adulthood in the coming years.

Advocacy work of this kind helps me sleep a little better at night, but what if your child (or you, as an adult on the spectrum) are at risk of losing an autism diagnosis as the American Psychiatric Association revamps their Diagnostic and Statistical Manual?  Fears of diagnostic exclusion have animated discussions of the DSM-5 since the New York Times reported on this earlier this year.

Lord: When ASD is seen as an array of symptoms

Dr. Catherine Lord, who serves on the DSM-5 Committee on Neurodevelopmental Disorders (the group that is re-writing the diagnostic criteria for autism), attempted to allay such concerns with a presentation that articulated the goals for the DSM revision.

"anxiety about access": First on Lord's list of goals in the revision was "do not change who is included."  Although one could almost feel a wave of relief spread through the packed auditorium of conference attendees, there was a more troubling item further down in Lord's list: "make sure that the [diagnostic] criteria do describe ASD and don't describe people who do not have ASD."

And there's the pinch: having an ASD diagnosis is, like most psychiatric diagnoses, as much a function of social norms as it is of any objective features or characteristics of an individual. Describing something as a disease or a disorder is a matter of social convention.

Take, for example, homosexuality. For quite some time (specifically in the middle of the 20th century) being sexually attracted to persons of the same sex was considered a mental illness. But in 1974, in response to the gay rights movement, homosexuality was stripped of its status as a disease (though it lingered on in another diagnostic category -- "sexual orientation disturbance" -- all the way through 1987). But today, "curing homosexuality" has gone out of fashion among all but a few fringe practitioners of conversion therapy, and the APA currently considers such therapy unethical.

Conversely, consider the case of Abraham Lincoln, whose dark moods and brooding affect lent him the gravitas to lead the nation through the grief-stricken days of the Civil War. Some people argue that Lincoln would have no chance of being elected today since he would qualify for a diagnosis of major depressive disorder. In our positive-thinking, pursuit-of-happiness contemporary culture, anything beyond the most fleeting sadness has become a pathology. Indeed, other DSM revisions currently under consideration include shortening the length of the normal period of bereavement (over the loss of a life partner!) to as little as two months.

Unlike gay activists, who were delighted to lose the stigma of mental illness, autistic individuals and their families often need to maintain their diagnoses because, at least for the moment, access to support services and medications that alleviate some of the challenges of coping in a neurotypical world depend on such a classification.

In fact, access to services for autistic individuals (for example, insurance coverage) has increased over the past decade because of the work of activists and advocates.  In the days when my girl was receiving her first diagnoses, a PDD-NOS diagnosis would have hindered her access to pharmacological therapies, hence her psychiatrist's care to provide an array of diagnoses that would facilitate treatment that I mentioned in the first part of this series.

Lord and the DSM-5 team recognize that
care needs to be taken to not exclude people
from access to services

Diagnoses shift across time as social norms change. And those social norms are shaped, in large measure, by the institutional decisions of powerful, if well-intentioned, groups of professionals.

I don't envy Dr. Lord and the DSM-5 committee the task of revising the volume's developmental disorders section. It's a sobering prospect to imagine that your decisions could cut or eliminate vital services for thousands of individuals who are currently diagnosed with autism. But short of grandfathering in everyone who currently has a ASD diagnosis (which would expose the vagaries of the construction of these categories), it is hard to imagine how enough care can be taken that no one loses their diagnosis.

Lord's presentation made clear that the committee working on the revisions of the DSM-5 has heard the concerns of the autism community. How, or to what extent, they can respond to these concerns remains to be seen, but her arguments for revisions to the diagnosis were elegant and eloquent:

• currently autism diagnoses vary depending on the place where the individual is evaluated, which should not happen with functioning framework. 

• changes in the presentation of autism since the DSM-IV was devised have been so dramatic that the new framework must account for many more referrals of: 1) toddlers and two-year-olds (due to better early identification), 2) older and younger children without intellectual disabilities, and 3) adolescents and adults with other psychiatric co-morbidities. 

• increased early intervention and the accompanying positive results make autism a far more mutable condition than it has previously been, and finally, 

• there has been (and needs to be) greater attention to the special issues of girls and women on the spectrum. 

These changes, Lord argued, make the process of accurate diagnosis more complicated, and more important, than ever. The diagnostic framework for autism, she asserted, ought to be robust enough to be useful for all ages, all development levels, any gender, and "all degrees of severity where there is impairment."

Lord: Deficits and capacities inside the spectrum

All of this makes sense, though there are lingering concerns.  For example, what if requiring repetitive behavior as one of the two primary symptoms of autism (a proposal being considered by the DSM-5 team) eliminated a whole swath of people from the ASD classification? They might well be pushed off into a newly minted diagnosis, Social Communication Disorder. Thus just as advocates for folks on the spectrum have achieved the hard-won fight for insurance coverage, some may be rolled off into this new diagnostic category for which no coverage is mandated.

Recognizing how very much is at stake in the entire enterprise of revamping the DSM may be a first step toward advocating for accommodations and services that are not based on a deficit model that requires psychiatric categories for access to assistance. Instead, in a more just and equitable world, support and assistance would be based on the shared social goal of developing the greatest capacity for each and everyone of us, on the spectrum or not.

I know it has an utopian ring to it, but in that world the parents of kids on the autism spectrum could sleep more soundly each and every night.

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This is the second of three posts reporting on the WCARP Autism Symposium 2012.  Check back in the next day or two for more on the clinical panel and a report on the breakout group that looked at services for adolescents.