Thursday, July 16, 2009

An interesting article I thought I would share....comments are welcome at the end

Why Is Autism Stressful for Parents?
Thursday July 16, 2009
by Lisa Judy Ro

(Lisa Jo Rudy is the mother of Tommy, age 12, diagnosed with PDD-NOS -- an autism spectrum disorder. She is also a professional writer, researcher and consultant. Lisa and her videographer/photographer husband, Peter, live in Massachusetts. Their son, Tom, is homeschooled and their daughter, Sara, attends public school. Lisa is working on a new book, entitled, "Out-of-School Learning and Your Child with Autism," due to be published by Jessica Kingsley Press in March, 2010. She is available as a speaker for conferences and events, and may be contacted at for specific details.)

On Saturday, I wrote about a new study that finds that raising kids with autism is more stressful for moms than raising kids with other developmental issues (dads were not included in the study). The researchers suggest that the "special" issue involved with autism relates to "autistic behaviors," which can really send parents over the edge.

Today, a Q&A with the researchers on the New York Times site adds a little more grist to the mill. After reading the article, though, I had to think that the researchers asked the wrong questions.

What's stressful about raising a child with autism in 2009? Sure, raising a child with a disability is hard and thankless work -- and that, in itself, is stressful. But here's my list of what REALLY causes stress for parents with kids on the autism spectrum:

* MONEY!! Even as some insurers are stepping up to the plate with some support for some treatments, others are running as fast as they can in the other direction. Families are spending far more than they can afford on autism treatment. That's stress for you.
* GUILT AND ANXIETY. There's plenty of info on the web that suggests that parents are in some way responsible for their child's autism, could have prevented, could cure it, or should provide more and more and more treatments for their child. No one can do it all -- but that doesn't mean you don't feel you should. Talk about stress!
* RED TAPE. If the researchers have never dealt with the special education system or state healthcare systems, they have no clue what stress looks like.
* OTHER PARENTS. Every support group for parents of kids with autism includes at least a few vigilantes who are determined to indoctrinate all the other parents in their point of view on autism. Just coping with their onslaughts is tough enough -- even tougher is resisting their sales pitches and guilt trips.
* THE MEDIA. Every day there's a new story about causes and cures for autism. Which bandwagon should you jump on? Is there a conspiracy to injure your child? Should you sue the vaccine courts? Will this or that new finding change everything? There's nothing like uncertainty to induce stress.
* LONELINESS. Parents of kids with autism are forced to the sidelines in so many ways. No, their kids aren't on the soccer teams, performing in the dance recitals or inviting friends for play dates. No, they can't hang out with other moms while the kids "play." No, they can't attend big, loud family events and expect a fun, low-key experience. In short, it's lonely and alienating to be the mom who is never able to just say "yes" to fun and friendship.

What do you think? Am I on track with these thoughts? Or is it really the kids with autism who are causing all that parental stress? Let me know your thoughts!


I agree with her on all her points except the guilt one. I have never really felt guilty for Noah having autism or felt I "GAVE" it to him in some way.

I think her last point about loneliness is the biggest one (other than money) that most parents and autistic kids face today. She was right on the target with that one.


Maddy said...

I agree on all points, especially the insurance!

However, I also have the guilt, mainly for not acting sooner to have them evaluated and also because I feel I never do enough, but I think most parents feel that too.
Best wishes

Betsy said...

I totally agree, too...but have never had guilt that I gave my boys autism. But I do agree with Maddy here about always wondering if I'm doing enough for could have acted sooner.

I did try out a support group once. It was more stress than destressing and I gave up after 3 sessions.

She really hit some great points here...I'll look for her book!