Parents, use that autism research wisely.

For shits and giggles, I occasionally subject myself to Autism research.  I like knowing that so many smart people all over the world are pouring their lives work into Autism. I used to follow it like some people follow sports. Way back in 1998 I went to the national autism society of america conference in Reno. At the time, I was running a very complicated home ABA program for my then 4 year old and the best part of the conference was hearing Dr. Lovass and Dr. Stanley Greenspan on the same stage. It was the Smackdown of the autism treatment world. Ended up being the most boring cage match ever.

I had spent the last 18 months walking around with Dr. Lovass’ UCLA study in hand as proof positive that ABA/DTT was the only thing standing between my daughter and a life of institutionalization. Of course I didn’t know anything but I was cute and white, I looked like I might have an attorney and  most importantly I was convinced. I was convinced that my daughter would benefit from home behavioral therapy.  Thanks to my daughter’s autism, I couldn’t find a babysitter to take her so I didn’t work and had plenty of time to drag her and this published research around town. Not sure which was scarier, the girl who screamed non stop or the UCLA study–no matter, I got the ear of several folks.

As it turns out, no one likes research more than other researchers, sometimes it’s a “misery loves company” type of interest and sometimes it’s a weird type of jealousy. Considering I was living with the subject of all of this research and it was all consuming to me and my autistic daughter I was more than willing to pander to someone’s ego if it meant that they would dedicate a few grad students to my home program.

The bulk of my first set of ABA home therapists were college students working for course credit at my home.  I have the Lovass paper to thank for that. But since then, I have no use for autism research. At the end of the day, I can’t understand the chemistry and frankly it isn’t for me.

The most interesting thing I’ve learned by reading autism research?  That Simon Baron-Cohen (an important autism researcher in the UK and wrote about “Mindblindness” in autism) is the cousin to comedian Sacha Baron Cohen. I love both men. How could it be that that gene pool is enriched with so much extra stuff?

Last week I listened to the Autism Science Foundation Podcast. It included a webinar from Dr. Matthew Anderson about findings from AutismBrainNet research. ( And I was both puzzled and relieved to hear that they are talking about the same chromosomal area that they were looking at almost 20 years ago.

I have to mention that the sound quality of the podcast was terrible! c’mon smarty scientist types…you can fix the quality of this podcast post production. Don’t you all have Macs? jeesh!

When you have a child, even an adult child as I do, with autism there is always a part of you that wonders if they don’t have another genetic condition that no one has developed a cheap way to test. Last time I took my daughter to a geneticists they said that they would love to do a full genome test but that it would cost about $5,000.00. And as much as I love my kid, naaaaah,

So if I had a wish, it would be that you scientists work on a cheaper genome test. And get to work on those jetpacks while you’re at it.  I’ve been waiting for one of those a loooong time.


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