Friday, June 25, 2010

The Politics of Autism

Webster's defines community as "a unified body of individuals." Going by that definition, the Autism Community isn't a community at all. In fact, the Autism Community is quite divided. A quick Google search is all that's needed to prove it. There are websites that discuss recovery and cures versus support and acceptance, genetic versus environmental causes, and even whether or not Asperger's Syndrome should be classified as an Autism Spectrum Disorder (from here on out referred to as ASDs). There are as many Facebook groups as there are viewpoints. Autism Speaks maintains a huge presence on Facebook, but there are also smaller groups such as Autism Acceptance, Not Miracle Cures

There are two subsets within the Autism Cure Movement. First of all, there are those who believe ASDs are caused by a genetic component. They approach finding a cure from a scientific perspective. Autism Speaks is probably the most well-known of these organizations. Autism Speaks funds research projects such as the Autism Tissue Program and the Autism Genome Project, while fundraising through efforts such as Walk Now For Autism and soliciting donations through partnerships with companies such as Toys 'R' Us. A recent study focused on genetic variations in people with ASDs. Other studies have focused on neurons and brain function. Treatments tend to be educational, including applied behavior analysisspeech and language therapy, social skills therapy, occupational therapy, and sensory integration therapy. Prescription medications, such as antidepressants and antipsychotics, are sometimes used as well.

Outside the mainstream, but still advocating for a cure, you have the so-called "Mother Warriors" who hang on Jenny McCarthy's every word, support Andrew Wakefield no matter what, and have probably tried every alternative therapy for Autism known to man. Groups such as TACA (Talk About Curing Autism) and DAN! (Defeat Autism Now!) believe strongly that ASDs can be linked to environmental triggers such as toxins in vaccines and preservatives in food. They advocate "greening" vaccines by removing toxins such as thimerosal (removed from all vaccines except the flu shot in 1999) and aluminum and following strict diets such as GFCF (Gluten-Free/Casein-Free) and GAPS (Gut and Psychology Syndrome). I recently read The Autism Book by Dr. Robert Sears, and much of the book was dedicated to information concerning alternative diets, various nutritional supplements, and other alternative treatments.

At the opposite end of the spectrum (pun intended), stands the Autism Rights Movement. These champions of neurodiversity abhor talk of a cure for Autism, demanding acceptance for what they deem is simply a "difference" rather than a disability. They view themselves in a manner similar to the Deaf Community. They see the need for a cure as an outsider's perspective, in which ASDs deviate from the norm and therefore must be "fixed." Aspies For Freedom organizes an annual Autistic Pride Day on June 18th and is campaigning to have Autistic people recognized as a minority status group.  Ari Ne'eman, who was just appointed to the National Council on Disability, has raised concerns that focusing on a cure for Autism will lead to prenatal tests that will, in turn, lead to an increase in the termination of fetuses with Autism. Ne'eman, like many others within the Autism Rights Movement, has Asperger's Syndrome. Critics, especially parents of lower-functioning children with Autism, argue that people with Asperger's Syndrome and High-Functioning Autism shouldn't represent the entire spectrum.

So where does this mom of a seven-year-old Aspie stand on the issue? I'm not sure. I agree with a little of all three positions--how's that for being diplomatic?  ;)  The evidence for a genetic cause is overwhelming. Literally. Science has never been my strong suit, and I think I could actually feel my brain hurting after two hours of reading studies last night. But even though no link has been proven scientifically, I can't help but wonder about environmental factors. I don't believe vaccines and preservatives cause autism, but I have wondered if they somehow trigger it in children who are genetically predisposed to it. I try to feed my children healthy, natural foods, just because I believe that all of those preservatives can't be good for them, regardless of whether they cause or trigger autism or not.

On Facebook, I often feel left out of most conversations regarding Autism, which is ironic, since I joined those groups to feel connected to other parents of children with Autism. On Autism Speaks, whenever anything at all is ever said about Asperger's Syndrome, there's always someone who lets it be known how LUCKY parents of children with Asperger's should feel, because HIS/HER child has SEVERE Autism and he/she WISHES his/her child was high-functioning enough to ONLY have difficulty making friends. We're not supposed to complain, don'tchya know, because it could be SO MUCH WORSE. I actually feel sorry for people with that point of view, because it's pretty obvious that they see their children as broken, as if there's some "normal" child hiding in there underneath all that Autism. Yeah, so I pretty much don't even participate in that group anymore, even though I keep it so I can read the links that are posted. I've found a couple of good blogs that way, like this one and this one. But there was another group that I removed myself from altogether, because I was offended by this: "When people make the decision not to Vaccinate their children, they are essentially saying that they would rather risk having a dead child, than to have a child with Autism. I think that speaks volumes about the Parents." Um...hello? That's a little extreme, isn't it?

When Connor was a baby, we vaccinated completely on schedule. As first-time parents, we didn't know we had any other choice. As he approached his one-year checkup, I started to hear things about the MMR. Much of it was misinformation, along the lines of "Don't give him the MMR! It has mercury in it that will give him autism!" (The truth is, the MMR has never contained thimerosal.) I started looking into the issue and made the decision to spread out Connor's immunizations from that point on and with my other two children, as well. After careful research, there were a few we skipped altogether. I weighed the risks and benefits of each immunization and made what I think was an educated decision, with the support of the kids' (new, as I switched from the doctor Connor had as a baby) pediatrician.

When Connor was first diagnosed, I went through the normal grief process, and that included beating myself up and second guessing every decision I had ever made. Was it because we allowed him to have all of those immunizations? Was it because I only breastfed him for three months, or because we switched him to soy formula, after he constantly threw up the milk-based formula? Was it because I didn't eat healthy enough when I was pregnant with him, or because I had post-partum depression? Was it because we followed the pediatrician's advice and let him cry it out for an hour every night for five nights (until we just couldn't stand it and decided it was stupid to do something that was so difficult for everyone involved)? Finally, I realized that we may never know. And I'm okay with that. It wouldn't change anything even if we found out tomorrow what caused our son to have Asperger's Syndrome.

As for a cure, I honestly don't think much about a cure. Maybe a cure would be more important to me if my child were low-functioning, but then again, maybe not. I don't think of autism as a disease. In some children, it can be a disability, sure. In others, perhaps it's just a different way of looking at things. But when I think of cures, I think of childhood cancer and muscular dystrophy. My cousin has Down Syndrome. I want him to have every available opportunity to be successful to the best of his ability, but I've never thought he needed to be cured. I feel the same way about my son with Asperger's Syndrome. I asked Connor not too long ago, if the doctor could give him a medicine that would make him not have Asperger's anymore, would he want to take it? He said no, that even though he has a hard time making friends "and stuff," it's just who he is. And if that's how he feels about it, that's good enough for me.

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