I have recently been banned on a local Facebook page from posting that I am giving a lecture on January 31, 2018 at the Elija School on treatments for dangerous behaviors, due to some of my views, which by some are considered controversial. I was also accused of supporting "putative" treatment, even after I informed the administrator about my brother Stuart, who now has osteoporosis, multiple fractures and may be crippled for life, after taking years of medications which weaken bones to control his behavior and that this would not have occurred if he was at the Judge Rotenberg Center.
At first I felt hurt, that this person instead of being judgmental, should be grateful not to ever have to go to sleep, or not being able to sleep at night, worrying if her child would be dead in the morning due to a life-threatening behavior, as my family had to go through.
I always feel that if it isn't one of my brothers (Stuart and Matthew) I have to fight a battle for effective treatment, then it is my daughter, Talia. I sometimes joke that I became a doctor, not to take nice trips or go out to eat, but to pay for autism treatment for her. When I had no school bus, I drove her to school from Queens, dropped her off at 9AM in Long Island, then went to Manhattan to do my autism research fellowship, and got home at 8:30 PM. Even though my husband is a lawyer and I am a doctor, we have worn second hand clothes and my husband collected cans at work. The fear is always there, that I will lose a hearing, and work like I did in residency training again to pay for her school and other therapy expenses. I do not understand how someone can think I would send my brother Matthew to a school to be abused.
Matthew is obsessed with and collects maps. Every time he calls the family he asks us for maps. At school when he behaves well, he gets 15 minute breaks to look at his maps. Recently JRC had Santa come. My brother excitedly told me that Santa gave him a new NYC map and the 2018 World Atlas. So thoughtful! He works a job, such a contrast to Stuart. I wrote my book because I felt I had to do everything I could for my family and I am disgusted with the status quo. While some individuals need psychiatric medication, for others, including Stuart in the present and Matthew in the past, it has become a chemical prison. I certainly could have been spending my time earning money seeing patients instead.
When I gave continuing medical education lectures on autism diagnosis and treatment in communist China, I never was censored. What irony I am censored here in the US!
What really infuriated me, was when the same person who censored me, considering me controversial, posted something from the Autism Self Advocacy Network, which promotes facilitated communication stating it "should be more widely available" despite the fact that it has been scientifically disproven and innocent parents have been jailed over this. I can't imagine what it must be like to be in prison, being unable to care for your child with autism. The Autism Self Advocacy Network also states "research suggests that the evidence base for ABA is relatively weak," despite thousands of published studies. Although I am considered to be controversial, I do not endorse any scientifically disproven treatments that have put innocent people in prison, and whatever I recommend is based on research evidence. My book has 361 footnotes.
I feel the bigger problem is a relection of today's society as a whole. Instead of civil debate and dialogue, we become self-righteous, close minded and judgmental. We need to listen to each other, not silence each other.