Friday, March 28, 2008

The brighter side of autism research

I have to admit that I don't always keep up with the latest in autism research, because it exhausts me to think that much of the headline-grabbing research probably leads people to believe that Bud's autism is the result of my bad judgment, bad parenting, or bad timing or the cause of the bad experiences in my life. I've had enough with the bad stuff, because - as you know - there is so much good stuff to focus on in my life with Bud. That's why I'm delighted to shine a little spotlight on a new study that's currently underway.

Teresa Ulman is a doctoral student in clinical psychology at Vanderbilt University, and she is also the older sister of a young man with autism. She wrote to me recently to tell me about her dissertation:
My dissertation study seeks to learn more about the positive growth in mothers and fathers of a child with a developmental disability. Having lived in a family with autism, I was struck by how the family research almost exclusively focused on all the horrible, terrible outcomes for families once a child with autism was introduced into the mix. My little project is hopefully a step forward in breaking the myth that a family touched by autism and other developmental disabilities is all doom and gloom.

I was intrigued and I followed the link to Teresa's survey, but was disappointed to learn that I was not able to participate because, for research reasons, she has had to limit the scope of participation. But I am happy to do my part to help by passing the information on to the rest of you, as I know that many of you will have valuable thoughts to share. In order to participate in the survey, you must be a parent of a child or adult between the ages of 8 and 25 with a diagnosis of one (and only one) of the following: Angelman syndrome, autism (not PDD-NOS or Asperger’s syndrome), Down syndrome, Prader-Willi syndrome, or Williams syndrome. (Because Bud's diagnosis is PDD-NOS, we were out of the running.)

If you fit the description and are willing to participate, I urge you to follow this link to Teresa's study and let her know about all the good stuff in your life.

14 comments:

dkmnow said...

If you have her e-mail address, you might let her know that there's a problem with the address submission page:

http://www.surveymonkey.com/s.aspx?sm=X2D00XX0zf2t2bfFSBg4zA_3d_3d

"If you would like to receive project updates and results of this study please provide us with either your street address OR email. We will store your contact information separately from your survey responses so we will not be able to link the two together. You are welcome to leave this form blank."

"---- PLEASE PROVIDE MAILING ADDRESS HERE, OR SKIP AND ENTER EMAIL ADDRESS BELOW IF PREFER TO BE CONTACTED BY EMAIL ----"

and later:

"----- PLEASE PROVIDE JUST ONE: EITHER YOUR MAILING ADDRESS OR EMAIL ADDRESS ----"

Trouble is, the page will not accept blank fields. If you try leave the conventional mailing address sections blank as instructed, you get the following:

"*This question requires an answer. If you live in the U.S., provide address here. International addresses can enter information below."

and/or:

"*This question requires an answer. Enter international address here."

Not good.

Jenn said...

Bummer. We don't qualify to participate either. Nick is too young and his dx is PDD-NOS as well. I wish her lots of luck with her project and would love to see the results. How very inspiring that someone actually wants to highlight the positive aspects of autism for a change!

kristen said...

Well, god bless Teresa, because yes, there is so much good, and I love to express that and see others express that. But my son's dx is also PDD-NOS, so I guess we'll have to sit this one out as well.

Thanks for sharing, though, and I hope we'll get to hear more about she learns from her research.

Holding It Together said...

I would be really interested to see what conclusions she reaches. We do have an autism dx, but my son has just turned 6, so we cannot join in.

Judith said...

We don't fit the age requirements either, but I love the study! Very cool..

Daisy said...

I've noticed our daughter has grown up very open-minded, very accepting of people who might not fit the mainstream in one way or another. Because of her brother? Or because she's attended schools that were inclusive, and had classmates with special needs? We'll never know.

Daisy said...

And we can't participate, either, because Asperger's is not part of her study.

MOM-NOS said...

Thanks for the heads-up, dkmnow. The technical problem has been fixed!

dancingmom said...

How fabulous! We don't qualify either, but I am so looking forward to the results of this study.

I think my NT son (he's 4) is already very sensitive to others; in fact, I just found out yesterday that his best friend at preschool has SID (he and his mom came over for a playdate yesterday). Luca is used to differences in people and he does not pass a judgement about it.

Also, my autistic son (actually, got a dx just yesterday! PDD: NOS) is also very sensitive; his best friends at school include non-verbal kids and children in wheelchairs. It's truly all the same to him.

xo karen

Anonymous said...

De-lurking. We do qualify and thanks for the link. Sincerely, diane G.

dkmnow said...

I tried again, and my e-mail addy was accepted this time. I'm not a candidate for the survey, as I'm not a parent, but I'm very interested in seeing the results.

Glad that worked out. :-)

Joseph said...

That's cool. She might be interested and already know about similar prior research by Ruble & Dalrymple, plus King et al.

mommy~dearest said...

Such a great idea! Unfortunately, we're out of the running too. I'd be interested to hear the outcome.

David said...

It is a great idea. Our son's challenges (Down syndrome) brought us way more positive change than sorrow. I often wonder how I would choose the do-over to run. I think I'd pass on the heart problems.