8/18/2010

An artificial divide? A Look Back

An artificial divide? A Look Back

I wrote the following post 03/30/2009 over at Detritus, as I was first getting involved in the online autism community. Hmmm. It's easy to see, looking back at this post, how Kathleen and I began to work together to try to build places where community could happen.
...

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.

4 comments:

Clay said...

I'm looking for some reliable statistics, and not sure where to find them. People are making claims as to how many Aspergers there are in relation to classic autistics. Also that ~80% on the spectrum are MR, (or ID). It doesn't sound right to me, but I don't have the facts, and am not sure anyone does. Where could I find out?

KWombles said...

Clay, I've written several posts on this, just use the search button for intellectual disability.

spectrum times said...

I agree as one with Asperger's,& two nephews on the Autism spectrum,Autism is a part of us whether you agree or not,so its time you accept us or get out of the way...ty

Roger Kulp said...

I've had one of my flares of arteritis,and I've been very sick again.In the time I've been away,you have written some amazing posts.In reading what you say about the discussion on the web,in the years before Wakefield,I can say,is I just got caught up on the posts at two Yahoo! groups that fit this description of these pre Wakefield groups perfectly.The one thing that every family represented in these groups has in common,is they all have diagnoses other than autism.Either of chromosome 22 disorders,or of both chromosomal,and metabolic disorders.

They are very different places than either the angry place,or Autism-Mercury.The concensus there,is autism is a BS nondiagnosis,that is just a manifestation of certain symptoms,and that the underlying genetic conditions are what matters.I have been taken to task for talking about "metabolic disease",instead of specific genes or chromosomes.Like neurodiversity,we know it's all genetic,but unlike neurodiversity,a lot of us would like real treatment.Nobody talks in terms of "cure",instead there is a lot of frustration about how doctors have not caught up with the science of our conditions.*

There is also a lot of solidarity,and community.Offering to put up a family at someone's house,while a child is in the hospital for example.Through one of these groups,I got my new doctor,a metabolic genetics specialist,who is next to impossible to see.Vaccine discussion is usually frowned upon,but I do feel since one of these IS an autism group,I need to bring the antivaxers up from time to time. Usually this brings out discussions about how a parent had joined a local support group,often after getting both autism and genetic diagnoses,only to be overwhelmed,and frightened by all the antivaccine and biomed loonies,looking for fresh meat to recruit.

The chromosome 22 group has a lot of families that go to CHOP.I need not remind you what Kim S.,Jake Crosby,and their merry band of loons have said about THAT place.

The neurodiversity people need to do more to reach out to,and be more inclusive to families with autism caused by genetic syndromes,because the antivaxers sure as hell aren't going to.

As for Bettelheim,he was a sorry excuse for a human being,who had serious problems of his own.His nutty ideas set science back decades.Hopefully we aren't going to let the Andrew Wakefields do the same.

*In many of these families here are autistic siblings who are not sick.They usually have the same chromosomal deletions,duplications, etc,but not the genetic mutations for the metabolic disease,and these metabolic diseases ALWAYS include GI disease.