By Dan Coulter
I’ve been reading published responses to the American Psychiatric Association’s proposal to remove Asperger Syndrome from their diagnostic and statistical manual (DSM). I’ve appreciated the personal experiences people have shared in explaining where they stand on the issue.
This made me think back, again, on my experience. My wife and I struggled through numerous diagnoses for our son, Drew, from the time he was in preschool. Communication Handicapped, ADD, ADHD, and Mildly Autistic are just a few of the diagnoses he received. We wanted so badly to help him and tried so hard. And our efforts did help. But the diagnosis of Asperger Syndrome when he was 14 was a watershed point. It was like having a 200 watt bulb turned on in a dimly lit room. We could see so much better how to help and support Drew. We could finally find books and other materials that really applied to Drew’s situation. We also found ASPEN, the Asperger Syndrome Education Network, and other support groups. Joining these groups let us meet other families with similar issues, share information and support each other.
It’s impossible to overestimate the value of a diagnosis that shows you practical ways to help when you’re desperate to make your child’s life better. It helped Drew, and it helped our family. My own diagnosis with Asperger Syndrome last year helped our family again.
One of my big concerns with the proposed removal of the Asperger Syndrome diagnosis is the effect on newly diagnosed children and adults and their families. Instead of immediately finding services, materials and support groups focused on Asperger Syndrome, will they have to sift through everything that’s offered on Autism Spectrum Disorders? Why make it harder for these families to find what they need?
Some of the responses to the proposed change say, in effect, “I’m not opposed to removing the diagnosis of Asperger Syndrome, but the APA needs to come up with other, specific diagnostic categories within Autism Spectrum Disorder that address different levels of functioning and needs.”
I respect this as a sensible, realistic suggestion: “You can do away with the Asperger Syndrome diagnosis if you replace it with something more effective.”
But to succeed, I think such an alternative would have to have specifics, organization and consensus behind it. I see individual recommendations with merit, but I don’t see a critical mass developing for any specific alternative to the immediate options of keeping or eliminating the Asperger Syndrome diagnosis. And the broader autism diagnosis would simply not be as effective in helping children and adults who would have been diagnosed with Asperger Syndrome.
So I’d suggest anyone proposing alternatives to the APA make them conditional: “Keep the Asperger Syndrome diagnosis until you can replace it with something more specific and effective.”
For the record, I’m happy to be seen as a person on the autism spectrum. I want all people with autism to get the respect they deserve and the specific support they need. As a person diagnosed with Asperger Syndrome, I have personal experience with this part of the spectrum. But I’ve also worked closely with families dealing with other forms of autism, most recently when making a video designed to help brothers and sisters understand and support autistic siblings with a wide range of challenges and abilities.
Before my wife and I started making videos about Asperger Syndrome and autism, I worked for a state university, a community college, several broadcasting stations and three major corporations. I’ve seen first hand how organizations need good communications to make good decisions.
I’ve also seen that to be successful, you have to accept and manage change. We often need to change to move forward, but not every change moves us forward. The American Psychiatric Association has invited our input to help them move in the right direction. I think that direction is to keep the Asperger Syndrome diagnosis until we develop a truly better alternative.
Again, I urge you to contact the APA with your comments at: http://www.dsm5.org/Pages/default.aspx
Let’s help the APA help us.
ABOUT THE AUTHOR -- Dan Coulter is the producer of ten DVDs about Asperger Syndrome and autism, including the new employment guide video "Asperger Syndrome at Work.” You can find more articles on his website: coultervideo.com.
Copyright 2010 Dan Coulter All Rights Reserved. Used by Permission.