If you have been following my Facebook page (https://www.facebook.com/pages/Fumbling-Thru-Autism/102482513246303) you may have noticed I have been unusually silent this year for Autism Awareness Month. That is because my mind is a muddled mess.
I was more on the anti-autism awareness side last year, because I was upset with Autism Speaks due to their negative messages about autism. Autism Speaks started Autism Awareness Month and it is a big money-maker for their organization (It’s Autism Awareness Month! Click this button to donate! Would you like to give a dollar to Autism research with your purchase?, etc., etc.). For me personally, I am still not happy with the negative images that Autism Speaks has put out there in the name of research. I have seen enough of the shock videos and scary stats with no qualifying statements. But there are people who think that focusing on the “scary side” of autism is worth it in the end if it generates research dollars or they say, “Hey, my kid is very aggressive and has meltdowns all the time, I want people to know that!” And here is where I feel conflicted. I have taken time to really put myself in their shoes. What if I had a nonverbal child and we had not yet figured out a way to help him/her communicate and my child was not progressing at all and frustrated to the point of frequent meltdown and aggression? Would I want more research funding poured into a broad range of treatment methods? Would I feel differently about Autism Speaks? I have to admit that I might.
Where things also get sticky with my feelings about Autism Speaks is their support of Applied Behavior Analysis (ABA). I have followed a lot of “respect diversity” autism blogs in the last year and most of them are totally against ABA and one of the reasons they hate Autism Speaks is the organization is a heavy supporter of ABA. ABA seemed to fail my child, but recently I tried some of the methods again and they were helpful (see this post: http://wp.me/p2OomI-1dU). I still feel that there are too many poorly run ABA programs. I would love to see more research into the benefits of having an ABA program that can be run in a way that incorporates play, other methods of teaching, music, child interests, helpful technology, and addresses underlying co-morbid issues such as processing lags and motor planning issues*. If I put myself in the shoes of parents who did not have a good experience with ABA, and my child failed in ABA and then thrived with another therapy or learned to express themselves with a device /letterboard, I would be mad as hell that Autism Speaks was pushing ABA so heavily and not putting a lot of funding into alternative methods to ABA. On the flip side, if my daughter would have progressed rapidly with ABA back when she was 3, I would be singing its praises and saying it was the best thing invented. But I have the benefit (if you want to call it that) of having a child who made little progress with ABA due to processing and motor planning issues age 3-4, but now (at almost age 6) is able to benefit because her processing and motor planning have improved. Which means I can see both sides.
So, do I like everything that Autism Speaks does or says? No. But I can see the other side and I understand their point of view. I will just stay out of the fray and spread awareness my own way by writing blog posts and sharing my child’s uniqueness within our community.
*For a good book on how this problem can completely frustrate a child receiving ABA due to pointing difficulty, read Ido in Autismland, http://www.amazon.com/Ido-Autismland-Climbing-Autisms-Silent/dp/0988324709/ref=sr_1_1?ie=UTF8&qid=1396611360&sr=8-1&keywords=ido+in+autismland).