A view of autism from along the spectrum

I wrote this post about two months ago, during Autism Awareness Month. My blogging hiatus got in the way of the heavy editing that all my writing requires. I originally intended to title the post “Beyond Oprah”, but the current title fits better with the unbalanced attention that a particular family is getting these days.

While I’m always glad to see autism get more attention, I’m disappointed when the media gives poor coverage. Even Oprah’s recent one hour show covering autism was, in my view, superficial. Fortunately there are other media outlets that are stepping up.

First, and briefly, Oprah’s coverage did not do much to raise awareness other than reaching a very wide audience. Oprah’s show may appear to be an hour, but commercials take it down to about 42 minutes. Subtract the ‘fades’ into and out of commercials, the passes between speakers, introductions and credits, and there’s probably less than 30 minutes of time left to actually talk about autism. Additionally, most of the guests participated in the Autism Every Day video last year. More diversity is needed in efforts to raise awareness.

Step in WNPR – Connecticut Public Radio. While Oprah was presenting information many had already seen a year earlier, the Connecticut NPR stations took a different approach. Over a two day period, WNPR dedicated two 1 hour episodes of the show Where We Live to focus on autism and what’s happening in Connecticut. Fortunately, on NPR an ‘hour’ means about 50 minutes rather than 30. Additionally, the producers sought out some wonderful Connecticut residents to tell the story. The story told was far more engaging than Oprah and I suspect it would be so even for those that don’t live in Connecticut.

Where We Live sought out 4 people, and one “special guest” to tell the story. The first episode was the more traditional ‘awareness raising’ approach. The guests were Dr. Ami Klin of the Yale Child Study Center and Dr. Marianne Barton of the University of Connecticut Both are doing internationally known work in the autism field. Dr. Klin presents a very holistic view of autism, and ties it in with a lot of the research that is currently being conducted. Dr. Klin’s reference to the breadth of the spectrum by describing it as “many autisms” resonated in it’s honesty about how difficult it is to ‘define’ autism. Dr. Barton has been working to improve early identification and is one of the developers of the Modified ChildHood Autism Testing Scale (M-CHAT) based on Simon Baron-Cohen’s original tool. Dr. Barton and others have been tracking the effectiveness of the M-CHAT over a period of years. While the studies are not complete, the tool has become one of the primary methods for autism screening for toddlers in the US.

The second episode included guests that have had a more direct impact on the lives of many autistic people and families in Connecticut. They are also all people that I have the honor of knowing personally. Ms. Stacey Hultgren is the Co-Director of the Connecticut Autism Spectrum Resource Center (CT-ASRC). The ASRC grew from a local parent support group into an organization that serves the entire state. Ms. Hultgren and her organization put an extensive amount of work into building a repository of information on services to support autistic people in CT. The final product, The Autism Spectrum Resource Guide is a 400 page volume covering almost every aspect of services available in the state. CT-ASRC facilitiates parent support groups, groups for autistic adults, and an advocacy course series that I wish I could find time to attend. Interestingly, Ms. Hultgren and the ASRC have accomplished all of this without affiliation with any national organizations.

Ms. Donna Swanson, was the second guest on the final episode. Ms. Swanson runs the Focus Alternative Learning Center, a mileu program for older children and teens on the spectrum. The Focus program is based on teaching skills in a ‘natural’ home-like setting rather than in an artificial setting such as a social skills group. Many of the staff members are young adults that were formerly participants in the program. MJ has been participating in the program for almost two years. Focus presents an advocacy panel discussion called “The Spectrum Unplugged” in which a group of teens and young adults present their experiences to an audience in various settings. The panel has been incredibly popular in the state and has been presenting about one or two times a month for almost two years throughout Connecticut. The Spectrum Unplugged deserves a post of it’s own one of these days.

The special guest on the final episode was Mr. Lucas Hoffstatter. I expect that he’ll be embarrassed that I refer to him as “Mr.” but he deserves the respect of a title as much as anyone else that I’m writing about in this post. Mr. Hoffstatter is a young adult with Aspergers, a former participant in the Focus program, and currently a Focus staff member. As team leader of the Spectrum Unplugged, he does a wonderful job of articulating both his own challenges and successes. Each time I see him speak publicly, I’m impressed by the mix of personal qualities that Mr. Hoffstatter presents. Each time this mix of qualities leaves one word resonating with me: leadership. I’m grateful that MJ has him as a mentor, even if MJ hasn’t yet figured out what a mentor really is.

I’m also grateful to WNPR to raising awareness in a way that Oprah could not. Each of the people who participated have accomplished far more than I could describe in a paragraph. These are the people that are doing far more than simply ‘raising awareness’. They are making a difference.

The links to the shows in the post above are to the WNPR archives where you can hear the shows in their entirety.

If I were the kind of person to give unsolicited advice, I’d offer some to Bob, Suzanne, and Katie Wright. If I were that kind of person, I’d probably post it on the internet and make an attempt to mix witty humor with philosophical insights into the human condition. I’d make sure that most of the advice was appropriate for many people, not just the Wrights. I’d probably organize the advice into a list because lists are so neat and tidy. Of course, I’d have to number the items on the list to give it the impression that some items have more value than others, as designated by a higher or lower number. I’d have to present it as a “Top 10″ list, both because it’s been funny for David Letterman for 25 years and also because all ‘best’ blog posts are Top XX lists (just check digg). I’d title my list Shawn’s Top Ten Pieces of Advice for the Wright Family. But I would only do this if I were the kind of person to offer unsolicited advice.

Shawn’s Top Ten Pieces of Advice for the Wright Family

10. Breathe In, Breathe Out, Move On

9. Remember that the term “Dysfunctional Family” is redundant. For all of us.

8. While I normally welcome events that may slow down the ongoing assimilation of the world by Autism Speaks, family fights are an exception. I’ve seen and experienced family relationships severed, temporarily and permanently, over similar disagreements of principle. The losses are always tragic. Make sure yours are only temporary.

7. Your issues are not much different from any family running a business. The needs of the family and the needs of the business are not always in agreement. When this happens, choose wisely. When you or someone in your family chooses wrong, refer back to item 10.

6. Your 15 minutes are over. Please exit stage right.

5. Money doesn’t buy happiness, and wealthy grandparents can’t always ‘fix’ things. Besides, the most important things to fix are inside ourselves.

4. I’m really glad the New York Times doesn’t consider the disagreements in my family newsworthy. (OK, that one wasn’t advice, but I really meant it.)

3. When it starts to feel like everyone is against you, you are probably your own worst enemy. I’ve been there and done that. Refer back to item 10.

2. The African proverb “It takes a village to raise a child” is dead on. However, don’t stand around waiting for the village to help your child. Instead, participate and help someone else’s child. And fund raising alone doesn’t count as participating in the village.

1. Don’t pay any attention to the advice of bloggers.