Saturday, June 08, 2013

Your child has autism. Now what?

I write this blog to help other parents and families, but I also write it to record my own notes and ideas. It's a reference for me. Today, while looking for another post, I found an unpublished draft from around 2004-2006. It was an ambitious post - intended to be a guide to parents with a newly diagnosed "autistic" child.

I never got past the introduction and an outline of topics. Rereading it today, I think it's still worth sharing. Some of my thoughts have changed, but I mostly agree with my old comments.

I suppose if I got enough requests I could fill out the topics, but really this could turn into a book I don't have time to write.
Our personal experiences mean that we are sometimes asked to do an autism orientation. I'm writing this post as a kind of mini-orientation that I can point people to, as well as using it to index some site references. I'll update it periodically, though most of the changes will be over the next few days. 
Before I begin, I need to state my biases. I write from a skeptical, technical, scientific, evidence-oriented perspective because that's my natural disposition. This means I spend little or no time discussing thimerosal, immunization, very poorly defined syndromes, etc. I have a lot of sympathy and empathy for families who pursue "alternative" therapies, but it's not what we do or write about. That doesn't mean we don't try things that have very limited evidence (such as "sensory integration" treatment), but we have modest expectations, we demand a very low risk of harm, and we look for empirical evidence of benefit. This doesn't always thrill the therapists, but that's tough. 
I think one starting point is this post and the article it links to: Welcome To Alaska. The Wikipedia article on autism, at least for today, isn't too bad. It's likely to be periodically afflicted by strong beliefs that lack evidence, but it should be relatively easy to spot those and read around them. 
The term "autism" is like "dropsy" in the 19th century -- a generic term used because we don't really understand what's going on. "Autism" is applied to children who are probably afflicted by a variety of brain dysfunctions and a wide range of healing adaptations. There now thought to be at least 6 major gene associations [that was 2006 or so] and there are probably many more. [2013 - many, many, many more]
For example #2 has the diagnosis of 'classic autism' but he has an above average IQ and does many things very well. He's quite verbal and reads well. 
#1 has a diagnosis of 'autism spectrum disorder' and is like #2 in some ways, but not in many ways. #1 has a much lower IQ, struggles to read and has far more behavioral problems, but has quite decent athletic skills. 
Almost all autistic children will tend to be rigid and prone to tantrums, but some are extreme cases (these tend to get more attention and may be difficult to care for at home) while some are not really all that hard to manage. #1 stresses our limits, but #2 (the autistic one) would probably not be too much parenting work if he were an only child. [2013: He got to be more work as he got older :-)]
It's very hard to generalize or predict about course or therapy. There are lots of strongly held opinions about therapy, but not all that much science. We've followed a 'moderate' path informed by professionals we trust, the research literature, and our own observations of both of our boys. 
We try things and see what happens. Often I'm surprised by what they can do. The very scanty scientific literature suggests that even with almost no professional intervention many children with autistic like features are much better as adults. It can be very hard to connect with the excellent therapists and it may be worth joining one or more waiting lists now. E may have ideas on therapists, but given our backgrounds and situation we've tended to rely more on domain specialists and ourselves than a general therapist. To put it a bit crudely, we're the 'general contractor' for the boys, and we hire out the specialty stuff.
The original ends with a list of topics I wanted to cover. The comments below are from the perspective of 2013:
  • Autism society of America: A good organization, but less useful for us than I'd expected.
  • Personal care attendent and IEP and state/county aide: Wow, we spent years trying to make aides/PCAs work. In the end we realized the PCA system was a poor match for our needs.
  • Temple Grandin books: It's useful to read 1-2 to get a feeling for a different mind, but she's no more like our boys than they are like us.
  • Financial planning: Complex!
  • Our book case, of which I took this picture way back then:

No comments: