1/12/2010

Still a Community Divided

I first posted this "An Artificial Divide?" on Detritus last March. The divide in the community is even wider today, but with good cause. Sites like Age of Autism make more clear with each passing week that their focus is not on autism, not on helping individuals on the spectrum with better access or in covering issues that directly relate to autism. It's about vaccines. It's time they change their name.

After a month or so of digging around at Huff, Age, and various blogs, this is what I took away from the exposure:

My son's diagnosis of autism was made before was autism was the in-diagnosis. It was 1994, and he was 4 years old, Back then, refrigerator mothers as a cause was still being bandied around. Bettleheim's book was the first thing I read about autism. It was a traumatic introduction to autism. Now, the first and most likely thing parents are going to hear in conjunction to autism is vaccinations being the cause. Refrigerator moms weren't the cause, and it isn't really likely that the MMR is to blame, either.


I think support groups, if you could find them then, were easier for parents of children with autism. It seemed a more cohesive whole, a solidarity. We had children with such tremendous difficulties and no real treatments. We didn't have a whole lot of information, and we were scared about the prognosis. We supported each other, commiserated, discussed what worked on good days, what seemed to go wrong on bad days. We didn't argue over vaccines (it would be another four years before Wakefield did his damage). We didn't argue over cause. We focused on how to help our children now.

I've been looking online at today's support groups and there is no solidarity, no sense of a cohesive community. That's probably okay. Autism doesn't render us identical. Our children have a wide range of issues with the same umbrella name. Many of us forget and assume our child is the prototypical autistic child. We assume that all the physical or mental symptoms represent autism. That's not the case, and hopefully we will get better at diagnosing co-morbid medical disorders and not lumping them in with autism. It is easy to assume a child's issues all have one cause, but not necessarily so (I think parents do that more than do physicians or psychologists).

There's plenty of hostility in many of the support groups and blogger's pages. Plenty of blame. Lots of conspiracy theories. In 1994, online support groups weren't in ready supply, so we got our support in small groups, meeting face-to-face. Now, we have anonymous screen names. We also have plenty of options for support groups.

We aren't welcome at all the options, though. If you are an anti-vaccination, Jenny McCarthy, Generation Rescue type, you don't have much room for someone who thinks differently. Especially if you think that the fact there are three children in the family with autism and plenty of family members with similar, though less severe, traits tends to point to genetic factors.

No, there doesn't seem to be open-armed support for all. Some folks see their child's autism as a scourge to be eradicated. They think that somewhere under all that autism is the child, if you can just get rid of the autism. Some parents would change nothing and have society adapt to the child as he or she is. Others see their child as neurologically different, with some challenges to be assisted in overcoming. I suppose it partly depends on the number of co-morbid disorders and the degree of impairment the child faces.

My reality is that my children's autism is an inseparable part of them. Their brains are wired differently from "neurotypical" individuals. This has created challenges for them to overcome so that they will "fit" in with society. My son has additional difficulties beyond autism which has made his journey more challenging. He's probably not going to live an independent life, but he has every ability to live a happy, helpful life that is of value. We should all be so lucky to be loved, valued, and supported as he is. I work every day at making his road easier, but I do that by giving him the tools he needs to cope, not by eradicating the autism and not by seeing his autism as a disease.

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