By Elise Ronan – The Times of Israel: I want to introduce you to a term of art, “autism syndrome behavioral study of the week.” There is generally some new study into autism every few months. Most of them detail what may cause autism, why autistics may do certain actions, and who is best able to handle every autism–related issue that abounds (usually the individuals who did the study of course). Unless it’s a hard science discussion about autism, something that may truly help my boys, I generally shake my head and just say “whoopsidoodle.”
In fact, as a mom dealing with autism issues, I usually don’t wait for the latest revelation from the behavioral sciences ivory towers. They don’t tell me anything I don’t already know. I think to myself, heck I could have told the talking-heads the same thing as the study reported, and charged half as much as the researchers. You see my research is on-going and most of it has already taken place over the last two decades. I call it, life in the autism-fast-lane.
Now the real interesting aspect about the research that is done into autism behavior is that we, the parents and those self-advocates on the spectrum, have been ready, willing and able to tell the autism gurus the truth about behavioral issues and outcomes. But does anyone listen to us? Nope. It’s truly about time someone who has some pull did just that. Ask us and we will tell you the whys, wherefores and the whatnots. If the Phds want we will even let them take the credit for the study in its entirety as long as it is something that helps the majority of those in the autism community.
Furthermore, it’s also a question of what do you do with the study? Does anyone actually act upon any of the findings or do they just chalk it up to scientific research, put it on their resume and apply for another grant? How do these research studies actually benefit the average person with autism? Do these studies actually change society in anyway? Perhaps that should be part of the grant proposal. “How is your research actually going to benefit the day-to-day life of someone who lives on the autism spectrum?” Answer the necessity of that question and you get some of those very very very rare research dollars.
Unfortunately one of the rather more useless studies, to have emerged from the minds of Phds is to tell us that those with autism have the propensity to be atheists. Really, you don’t say. What a shock that people who operate with literal minds can’t and won’t take the leap into the realm of faith. So once again, how does this waste of time and money actually provide supports and programs for those adults on the spectrum?
Moreover, the study, interestingly enough, also missed out on one big factor. For some, like my oldest, it’s not about literal reality versus faith. It is about the feeling of abandonment. God’s abandonment. Not because he has aspergers. Quite on the contrary. He is very happy to have an autism spectrum disorder. His anger at God is something entirely different. Something not even related to himself, well not directly anyway.
Oldest-son was a Holocaust major in college. The more he learned about the tragedy that had befallen the Jewish people the angrier he became. Not just at the world at large but at the idea that God exists. Understanding why God saved the Jewish people from bondage in Egypt and had not saved them from the Nazis, isn’t something he could assimilate. And no matter how many times I tried to get him to read what religious people had written about the existence of God and God’s miracles in modern day juxtaposed with what happened during the Holocaust, it didn’t help. No matter how many times I tried to explain to him about the human responsibility connected to freedom of choice would he budge from his objection to the existence of God. Even when he took a class on Judaism, something that I thought might answer many of his questions, it didn’t help. In fact, he drove the Rabbi to distraction.
Ultimately, I tried to point out the miracle that is Israel and how the Jewish people have survived. As a student of history he knows the story of the Jewish people. He knows the modern need for Israel and the place of the Jewish people in the history of the world. To understand how he views the world now you need to know that my nickname for him is traditional-secular-Zionist.
My youngest-son, on the other hand, is an agnostic. He is not sure what to make of God. He is not quite certain that he should just throw the idea of God away like his brother has done. Honestly, I think he is hedging his bets at the moment. Deciding that it might not be a good thing to anger the al-mighty powers that be in the long run. He is going to wait and see how things turn out. I figure he is trying in some way to manipulate the God-issue to his advantage.
Interestingly, one of the things that no one tells you in these wonderful studies on autism (but something we already know) is how adamant those with autism can be about their philosophies and beliefs. Some would call it rigid. I like to think of it as fervent. For an interesting view of daily living, just try living in a home with aspergeans with wildly differing views on major issues of the day. The continual individual need for them to try to get the other family members to agree with them creates a video game-like loop on steroids. It’s the same level over and over again with no one winning. Eventually you run out of lives (and aspirin for your headache) and you simply have to put a cabash on the entire discussion. You have to try to teach everyone to agree to disagree. Which also doesn’t quite work out at times either, since that lesson generally devolves into a discussion of why you need to respect someone’s “inane” opinion.
Now with Seder just around the corner, discussing the issue of God and his wonders becomes a rather interesting time in our home, once again. Because of the boys’ intense attachment to their own philosophies we have had to sit them at opposite ends of the room during the Haggadah portion of the evening. We have instructed them to ignore each other. Basically, no fighting, yelling or name-calling allowed. Meanwhile we find new ways to engage them and carry on the tradition of recounting the exodus from Egypt. Of course, when we get to the part where the Children of Israel are finally freed from bondage, the oldest without fail brings up the Holocaust. Hence, we begin, once again, our own unique version of life in Jewish-Aspergean-Wonderland.
And just so you don’t think that the oldest only cares about Ashkenazi Jews here’s a link to his senior thesis:
Yeah the research for that paper didn’t help with his acceptance of God either.