News from the Oklahoma Autism Alliance

For the past 8 years, our son's home and school program has been enriched by the knowledge, wisdom and contribution of Dr. John McEachin from the Autism Partnership in Los Angeles. We have learned invaluable tools to work with our son Michael, who will be turning 18 in just 2 weeks J During our work time on his last visit, Dr. McEachin brought up something that is so necessary for us to be aware of, and it was so reassuring for me to understand better, that I thought I would share it with you. He explained that even though most children hear the word "no" come out of their parent's mouth a lot, this is even more so for people with autism. This is because they would like to engage in their own rituals and stereotypic behaviors (or stims), in other words, they would like to just "be" autistic, and we keep saying, "no, you can't". This observation of his was an "aha" moment for me...even though we have been working intensively with Michael for the last 13 years, it wasn't really until last year that I really questioned the value of what we were doing. When he said those words, I realized that was exactly what I had been questioning all year last year...are we doing the right thing? Why are we making Michael do all the things we make him do? He has autism; we should just accept that fact and let him be...what is so wrong with sifting (picking up items and watching them drop, items like pennies, pegs, puzzle pieces, sand, beans...)? Dr. McEachin explained this to me by comparing autism to diabetes. He said someone with autism is as sick as someone with diabetes. You wouldn't let a diabetic eat all the sugar he wanted, he would die. Because of the severity of behaviors in Michael's autism, if he spent his time doing what he wants, that is to engage in autistic-like behavior, he wouldn't die, but the quality of his life would be gravely jeopardized. He would end up consumed in rituals and obsessions, which would lead to great temper tantrums when things didn't go "just right" for him. He would also deprive himself of the opportunity to learn about all the truly meaningful and fulfilling things he could be doing in his life. By exposing Michael to a variety of activities, teaching him to tolerate change, spotting obsessions and rituals when they begin to appear and not allowing them to get out of hand, and teaching him age appropriate activities that he can engage in to be a part of his family and community, we are helping him to overcome some of the challenges of autism and to reach his potential. In other words, we open many, many doors of possibilities and opportunities for Michael. I brought out the point that we want Michael to be happy and he seems happy when he is engaged in autistic-like behaviors, like sifting pennies or sorting his markers. Dr McEachin compared that to an alcoholic that has to have a drink...he might think that all is well and that he is happy when he has that drink, but that happiness is not real. In reality, Michael's meltdowns occur mostly because of rituals and obsessions that either change or are not available to him at the time he wants them. When these rituals and obsessions are spotted and worked through until they go away, Michael learns to tolerate things not being "just the way he wants them to be" , he is calmer and ultimately, happier. This also allows for a better atmosphere around him, where he can focus on other activities that are available to him and be a part of his family and community.

We have always put maintaining and working through behaviors as #1 priority. We work on it every day. During this last visit, Dr. McEachin started Michael on a "fun" way to look at his behaviors...sorting (which Michael is very good at) index cards with behaviors written on them. There is a pile of "cool" behaviors, like high-fives, smiling, quiet voices, deep breathing, and a pile of "not cool" behavior, like sifting, stomping feet, and making noise. We wonder if Michael thinks we are crazy for putting sifting in the "not cool" pile J When he was done sorting and all the behaviors where in their respective files, it was so neat to watch Michael's face...he just stared at the cards, pointed at them, read them and looked at us, almost like saying...ahhh...interesting...

So...no....we are not telling Michael he cannot have autism...we know that he has this disability...that is the reality...we are telling him that we love him. If he had diabetes we would tell him he cannot eat that cake, since he has autism we have to tell him...no sifting...no noise...no stomping feet...those are NOT COOL!