The Asperger Diagnosis and Support Groups

February 21, 2011

by Dan Coulter

I recently spent a lot of hours with moms and dads of children diagnosed with Asperger Syndrome – in the editing room.  I make educational videos, and I was looking at interview footage of parents talking about how things had changed after the diagnosis. 

They all said things got better.  Many of the stories were dramatic.  Which is not surprising, when you consider that most of these parents were using the wrong instruction manual without knowing it.

In writing their own instruction manuals, one key piece of advice these veteran moms and dads had for parents of newly diagnosed children was: find a support group!

Whether their children had been diagnosed early, or in adolescence, or as adults, they found support groups to be important sources of information and comfort.

One mother put it this way, “It’s great when you find somebody with an older child than yours and find out what they did.  And it just takes a lot of stress off to know that you’re not alone.”

My wife, Julie, and I were fortunate to find the ASPEN support group after our son was diagnosed with Asperger Syndrome at the age of 14 while we were living in New Jersey. We now live in North Carolina, where we’re members of the Autism Society of North Carolina and Julie has a leadership role in our local Forsyth County Autism Society.  We’re also still members of ASPEN, which has become a national organization.  Nearly 15 years after our son was diagnosed, we still find these support groups help with a range of issues in our lives. (There are many more great support groups we’ve learned of or worked with over the years, but if I tried to list them all, this article would go on for pages.)

One great thing about support groups is variety.  You may hear two or ten approaches to a problem.  But you can choose the approaches that sound likely to work for you.  And you can seek out people who have similar situations and whose opinions you trust.  You can get recommendations on doctors, schools, and resources.  And you can make lasting friendships.

If you don’t find a local group that meets your needs, or even if you do, there also are online groups available.  Most online groups let you view messages posted to a forum on a website, or receive postings via email.  Forum members share stories, ask questions and offer solutions.  One online forum I check frequently is the Asperger List on ICORS.  You can find more information about this forum at http://asperger.icors.org/.  (The subscription process is semi-automated, and to complete your sign up you’ll need to respond to the first two posts you receive in a process designed to protect the list from spammers.)

You can find the ASPEN website at www.aspennj.org.  Among other resources, it has a list of local Asperger Syndrome support groups around the country.  The Autism Society of America website,http://www.autism-society.org/, also has a list of local chapters.  

After your child is diagnosed with Asperger Syndrome, he or she needs understanding, and so do you.  Support groups can be great places to find people who know what you’re going through – and care.

ABOUT THE AUTHOR:  Dan Coulter was diagnosed with Asperger Syndrome in 2009, after a long career in broadcasting and public relations. He is the producer of ten Asperger Syndrome and autism-related DVDs. You can find more articles on his website: coultervideo.com.

Copyright 2011  Dan Coulter     All Rights Reserved    Used By Permission

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