Does Narrowing The Autism Spectrum Hurt Or Help Kids On The Fringe?

By Dan Mauzy
Feb 7, 2012, 3:30 PM
11 Comments

Shayan Forough goes through Applied Behavior Analysis therapy with his instructor in Oct. 2008. (AP)

An expert panel is recommending changing the very definition of Autism that’s currently found in the Diagnostic and Statistical Manual of Mental Disorders, the “bible” of mental health, published by the American Psychiatric Association.

It’s a potentially enormous shift with an equally enormous set of consequences.

Could these proposed changes in the way the disease is diagnosed curtail an epidemic, or deny some children the services they need?

Guests:

Ilyse Levine Kanji, committee member, Westborough School Committee
Dr. Catherine Lord, director, Institute for Brain Development; task force member, DSM-5
Benjamin Nugent, director of creative writing, Southern New Hampshire University; briefly diagnosed with Asperger’s Syndrome

More

New York Times: New Definition of Autism Will Exclude Many, Study Suggests‘
Commonhealth: Narrowing Autism Definition Will Cost More, Later

Kathy

Asperger’s Syndrome, ADHD, or way back in my days in school Dyslexia. All massively overdiagnosed for the same reason. The correct diagnosis for 90% of them is Middle Class Mediocrity Syndrome: The tragic ailment of getting a C when your socio-economic status is middle class or above.

Lisa

I’m wondering what leads you to post this. Any facts to back up your claim?
JillL

Kathy, �
My son is 21 and a successful college student who is in no way mediocre. But he had many many neurocognitive challenges, including difficulty learning to read. When he first started working with an Orton Gillingham instructor he said to us, “Can I just do the work Jan (the tutor) is giving me and not do the homework from school, because this stuff is working.”

If my son had not gotten the therapies and remediation he needed he might never of graduated HS. He might be on social security and require services from the Department of Mental Health. I was not worried that he would be mediocre. I was worried that he might never ben independent and functional!!!!!
Patrick Hoepner

Xm

Andrea

I’m so upset you included Benjamin’s story with this topic. After he said one sentence I knew he didn’t have Aspergers. This is a very serious discussion and by talking with Benjamin you made light of the real problems people with Aspergers face. These are the people most likely to lose services with new autism definitions. I’m surprised and disappointed that you chose to lead the discussion with Benjamin.
Jennifer

I am so grateful to your in-studio guest for addressing the Benjamin Nugent issue straight away. The fact that the New York Times, and now Radio Boston, are introducing this “anomaly” (as she so aptly put it) into the conversation is infuriating. His story is a destructive diversion and feels like a very premeditated attempt to discredit Asperger’s, belittle Aspies and their families, and thereby undermine the significant gains we have made in understanding, educating, and advocating for them.
http://www.facebook.com/people/Paul-Osborne/1176829179 Paul Osborne

The mere fact that this was the topic for today’s program shows just how poorly the DSM-V changes have been communicated to the public. Scientists from all fields think nothing of changing theories and definitions when needed. However, this one has immediate ramifications for countless parents whose children have real problems and benefit from assistance. The typical ignorant legislator does not care about a nuanced academic discussion. For them the superficial argument about who is no longer strictly considered autistic is now the entire argument. Dr. Lord needs to do a much better job of public relations before her work is used against her.
Lisa

During this afternoon’s conversation Dr. Lord said, “We can’t diagnose everyone in the world with autism.” As a mother of a son with autism, I know first-hand that no one would “want” to have their child diagnosed with autism! No one wants to have their child pulled out of the regular school day to have to work on remedial skills (particularly the child who can be stigmatized by the pull-outs). No one wants to spend their day shuffling between doctor appointments and therapies like speech/occupational/physical/social skill therapies — and then fighting with insurance companies for reimbursement. Yet when our children need support to enable them to grow into productive members of our society, we do all that is in our power to help them. Changing the definition won’t change how many children need help. It will only change who pays for the services — shifting even more of the financial burden onto families.

Autistic children can, and do, learn with appropriate supports. Don’t take those supports away by changing the definition.

Cforde21

I agree with this parent. its bad enough we got to fight with society now
they want us to fight with insurance and take away services. that is very upsetting to me, cause we had to fight for the diagnoses to get help and now they wanna take it away .

THATS BULL!!!!

Anonymous

I agree with other posters that have pointed out Benjamin Nugent’s story is an anecdotal tale that seeks to minimize the diagnosis of Aspergers. I have a teenager with Aspergers and a younger child with PDD-NOS. Both receive services that have already made significant and positive differences, the goal being to live productive, independent lives with tax-paying jobs. What the APA and DSM-V authors do not make clear is how this impacts those who are already diagnosed and receiving services – do we have to start the testing all over again to qualify?
http://twitter.com/naturesson mthr

The metaphor of “disorder” is being stretched to cover every conceivable failure to adjust to society’s utilitarian concept of normality. The popularity of exceedingly vague and (therefore) easily over-diagnosed conditions like Asperger Syndrome is the clearest sign of this trend.

Codifying even the subtlest of individual differences as disorders or syndromes or “conditions” has profound ramifications on the level of culture which may not be immediately obvious to individuals focused solely on their personal or their children’s socio-economic survival. From the perspective of the individual it seems convenient to have a simple diagnostic label for every perceived failure of adjustment, but we have to ask ourselves what kind of society this individualist-reductionist approach is creating for future generations.

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Does Narrowing The Autism Spectrum Hurt Or Help Kids On The Fringe?