Friday, August 18, 2006

Alone In a Crowded Room: Refections from an Autism Mom...

The title to this blog is actually the title that my editor from Autism Asperger's Magazine wanted for my article about discrimination a few years ago. I thought it was a little too whiny, and instead went with "My Son Has Autism Too".

I wrote that article 3 years ago. Has my worthiness status changed in 3 years? No. What HAS changed is that I have more company. I meet more and more children that have no longer meet the diagnostic criteria for an ASD. They no longer need intensive intervention. They can be mainstreamed with little or no support. The word that has been used for this description is Recovery. Fighting words for many.

My desire is to understand those that have such a visceral reaction to other parts of the spectrum for the purpose of becoming an ABA therapist at some point (currently I'm a preschool teacher learning as much as I can about development).

I also want to broaden my perspective in order to help the many people that email me for guidance. Unintentionally, my site has become an insirational one, so I don't get my little niche of HF mainstreamed parents as I expected. I get the gamet, and they are welcome.

To learn more about other parts of the spectrum, I've discovered the wonderful world of blogging, and I've honed in on the sites I'm most attracted to. They are brilliant parents. Some are real writers, which makes sense as to why I like their blogs so much. They are wonderfully insightful and I've learned so much about THEIR parking spot on the spectrum. A few can be found on my list to the right.

There is some of what I've learned so far (and of course it' much more than this, but this list pertains to the topic at hand): Their children have a lot in common, like age and similar deficits. These parents are hopelessly positive, and rarely have bad parenting moments and bad days. I am in awe and feel pretty intimidated by this. Sheesh! They can't stand labels and categories.

I also see how they judge other "factions", and have little tolerance for fellow ASD parents on other parts of the spectrum. Not much discussion, if at all, about fighting with their school districts. I can only infer they are affluent enough, or have lucked out with their schools. Bonus, if it's true!

They also make lots of implications and inferences that are incorrect about fellow parents that have a different "parking spot". I can totally understand how this happens - and like many things in life, it's from not understanding where another person is coming from. From not being informed OR CURIOUS about where I reside in the world of Autism. I know I've had many incorrect assumptions, and I've learned so much from reading these blogs. I've very thankful to have found them.

Kristina Chew is the only exception - she is attempting to understand other parts of the spectrum, and differing viewpoints on therapies. I don't feel judged by her. I am grateful for that, and grateful for her writings.

They also show disdain for parents that reside near their parking spot, but have differing views (ex: Autism Everyday video - no empathy for the fact that these parents feel the way they do, only judgement). I could be incorrect about this, but man!

I've made a big effort to connect by sharing my thoughts and I'm immediately blasted. This is hurtful. I'd love to be a part of such a loving supportive group (with each other). They seem to share the same views on books and news stories as well. Very little, if at all, disagreement. Lucky people to have found each other!

Why do I bother? Many of my friends think I'm crazy for putting myself out there. Clearly my views are not shared, nor is anyone really interested in what I have to say.

Am I an Autism parent? Yes. How has my life changed in 3 years? I don't have an impossibly giant schedule to manage and implement. Other than that, my fears and thoughts remain pretty much the same.

Autism is a treatable disorder. Treating our children doesn't mean I don't accept who they are. True, many parents reject their own children. I'm happy that I don't have a full-time schedule to manage and implement. I'm happy my son no longer vomits in anticipation of getting a haircut. I'm happy that Leo can walk down a crowded hallway without panicking and hand flapping. I am envious of these blogging parents that support milestones and good days. These parents reject my most joyous moments of my child becoming happier and healthier. Only parents in similar parking spots can be happy for me. Why is that? I'm still searching for that answer.

We can make huge positive changes with biomedical treatments and therapy that make our children happier and healthier. Less autistic? Yes, the bad parts that many adult's with ASD would list as something they'd get rid of. Something else I've learned from reading the blogs of adults on the spectrum. These children are STILL different, STILL on the spectrum. A beautiful fact, diversity.


Melissa H said...

Reaching out to you and letting you know that you're not alone. I certainly don't fight labels or categories (in fact, I embrace them if they get my son the therapies he needs) and I definitely had one hell of a battle with the school system this past year.
I apologize for those bloggers who made you feel outcast, especially if I might have been one of them somewhere in the "parking lot".
We're all on an amazing journey with our children, learning new things about them and ourselves. Sometimes it is helplessly dark and other times it is astonishingly exciting. Hoping to share both with you in the future.
Blessings to you.

Steve said...

Count this as another "you're not alone". I have also been amazed at how many folks are unable to even attempt to find some middle ground. Oh well, we'll keep trying, right?

Ashley loves Leo said...

Thanks Steve and Melissa! You made my day. Glad to know that I have two additional parents that can "see" me as a fellow ASD parent.

I support a lot of families online via my main website (, and I always got such positive feedback and thank yous, so it's not all negative, just when I attempt getting support for myself.

So that being said, THANK YOU!