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Autism Awareness: Both Actions and Words are Needed

Posted Apr 01 2009 2:52pm
One of my favorite writers, Kim Stagliano, has a post on Age of Autism today entitled, We're Aware Already, it's Autism Epidemic Action Month! And I totally agree with her. Any parent of a child on the spectrum is painfully aware of the autism epidemic and Kim has some wonderful suggestions for ways to be proactive and to offer real help to parents and their children on the spectrum. As she says, something as simple as offering to babysit so a harried parent of a newly diagnosed child can just take a break, go grocery shopping alone, or even make phone calls to doctors and insurance companies. All seemingly simple activities that are monumentally difficult to do when your adorable little autie or aspie toddlers are present.

Kim also gives a shout out to Lend4health, profiled by my friend Thomas at The ASD Experience. This wonderful group provides microloans for autism treatment funded through donations. They really are making a difference.

Actions definitely speak "louder than words," as Jenny McCarthy has shown.

But I am discovering that words are still needed too. I am struck at the lack of awareness and sensitivity that exists not only towards autism, but towards all people with special needs. Take for instance, the recent remarks by our President on The Tonight Show. Although he apologized, an apology accepted with grace by Timothy Shriver, those comments really hurt. I forgive him, we've all said things we regret and I agree with Mr. Shriver that it was a "teachable moment." But Mr. Obama's slip-up says to me we have much more educating to do. (And while I am on this topic, take a moment to sign the Special Olympics'spread the word to end the word pledge.)

In my every day life, I was faced with an example of lack of autism awareness just yesterday. It was also another example of the huge contrast I see between the treatment and awareness for cancer, as compared to autism, as I have disussed here.

I went for a follow-up appointment with my primary care doctor. He is a nice man, a good man, with a delightful sense of humor. I have been going to him for more than 10 years. Until I was diagnosed with cancer, he used to always joke with me about how I was healthier than he was. My diagnosis totally surprised him and seemed to really upset him. His demeanor towards me changed, and now he rarely jokes but speaks very gently, though yesterday he did say I was doing great and he hoped I would run in the Susan G. Koman marathon.

Then he said that breast cancer seemed to be more common and he wondered if it were truly increasing or if there is just better diagnosis. Where have we heard that before?! So I responded, as you probably would too, "yes, just like autism." He looked at me like I had two heads. I reminded him my son is on the spectrum, and he said, "well, he didn't get it from vaccines."

I thought that was such a strange response. It was kind of like he was baiting me. I chose not to play. It seems that now when people hear the word "autism" they automatically think "vaccine" and there is so much more to discuss than that, in my opinion.

Instead, I told him how great the Prince was doing, showed him some photos, mentioned that he was going to be in the gifted class for science next year. His response, after smiling warmly and saying "that's great," was "all those kids are great at math and science, your son might not be able to drive but maybe he'll go to MIT." That wasn't exactly the response I was going for either.

Now, my doctor is not a pediatrician, he specializes in internal medicine. But like Mr. Obama, I think he has a lot to learn.

In addition to treatment with "traditional" and "pharmaceutical" medicine, my oncologist has me on quite a few vitamin supplements and diet modifications. Everything she is doing for me is based on research and my blood tests, tailored to me. Again, does this sound familiar? Not unlike the approach of a good DAN! doctor, no? My primary doctor is fully on board with this approach, is even aware of the research my oncologist consulted and has no qualms about it. However, what do you think he would say if I mentioned the GFCF Diet in connection with autism? I'd probably get a lecture.

How come there are several well-funded, double-blind studies on the effects of alcohol, soy, red meat, and other foods and beverages on breast cancer, yet it is a struggle to find anyone to research dietary interventions for autism?

So follow Kim's advice, treat this month as "Autism Epidemic Action Month" but also use your words-- and actions --to make others aware. I truly hope that one day patients with autism and their caregivers will be treated with the same sensitivity, kindness, and well-researched treatment options as cancer patients. Having been on both sides of the fence now, I continue to be amazed by the contrast.
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