Susan's Blog

Tuesday, September 22, 2015

Trumped-Up Priorities

It’s nothing new for someone like me — a liberal Democrat — to wince at and deplore the things that Donald Trump and some of the other GOP candidates say. The Mexico Wall. The mistrust of social programs. The attacks on Planned Parenthood. The scary ignorance around climate instability. But it is the dangerous statements about autism that dig into me — the mother of a 25 year old with autism — to my core.

All of my son’s life I have had to combat wrongheaded ideas about autism. Not only that, first I had to realize that these ideas were inaccurate in the first place — and that Nat’s autism was not my fault. First there was that day, at the Passover table, before Nat’s diagnosis, when he would not leave the front door the entire time. All eyes were on me, filled with confusion, compassion, but also  — condemnation. “You’re paying too much attention to the baby,” my grandmother scolded, indicating how I was holding Nat’s newborn brother throughout the meal. This was what I believed, too, that Nat’s misery was strangling him and I was unable to parent him properly. Soon after came the diagnosis, when I heard the words “autism-like,” and the nausea I felt because in my ignorance I thought I’d caused it. My only familiarity with autism was what I had learned in a high school class in  1978 or so: that the disorder was caused by cold, “refrigerator” mothers. Luckily I had a humane doctor who knew just what to say, “Oh, no one believes that anymore,” he said, dispelling that cloud of poisonous lies in that air.

Still, my own ignorance nearly destroyed any pleasure I felt during Nat’s early childhood. The march of snake oil cures I was supposed to try for him, each promising Normal — if I only made the effort to get him blue-green algae, massive doses of vitamin B12, secretin, chelation, parasitic worms… just to name a few. Was I a bad mother because I did not chase after those “cures?” .

As an autism mom, you never really escape blame of one sort or another. Your kid is bothering the other kids in the sandbox. Your kid is too old to have a tantrum in the supermarket. You made a terrible decision and got your kid vaccinated. Now thanks to Trump and the lesser GOP minions, the alleged horror of having autism has reared its ugly head, along with the open assertion that autism is the very worst thing that can happen to your child. Once again we have the glaring spotlight on autistic people as nothing but medical accidents, weird beings to pity.

Society continues to focus on how bad autism is, but not about what autistic people need to live their lives. Autism adulthood services are what Trump should be shouting about. Why should an autistic person lose the job his school has secured for him, lose his supports that he had during his school years, just because he has turned 22? What happens to him then? Well, in a 2008 survey, 85% of autistic adults were living with parents or some family member once they crossed over into adulthood, and “only 19% of individuals with autism were employed…with 74% of those employed working less than 20 hours per week. And yet in the next ten years, 500,000 autistic adults will be aging out of school and into a society that offers them next to nothing in terms of help. Except isolation — and objects of fear and disgust.

I really resent this latest of Trumped-up charges. Yes, autism has been hard, but not as hard as the ignorance I’ve had to deal with. Or the nasty people who stare and laugh at Nat when he does his self-talking or flapping in public — something that looks odd but really helps him feel better for some reason when the overwhelming stimuli of the world threaten to engulf him.

When all we want to do is raise our kids to live in this world, to play, to work. My son is one of the most beautiful souls I know — not an angel, not an odd genius. Just a really good guy. Utterly connected to me, he still covers his own eyes when he sees me cry. He will do any chore you ask him to do, as long as he understand what you’re saying. His favorite places are home and JP Licks–a Boston ice cream store. He has simple pleasures, and he always strives to do his best.

So he’s neurologically challenged. So what?  To me, the debate, the controversy Trump has stirred up is indeed harmful to public health.  Because of the terrible bias, these fears about autism, autism-as-the-biggest-enemy, that keep the public’s thin attention span on the wrong point, and people with autism continue to lose out.


Susan you are my hero. This is so well put and I agree with everything you say. Also I enjoyed the credit you received in the new book Neurotribes — well deserved!

— added by Karen Mariscal on Tuesday, September 22, 2015 at 5:16 pm

Thanks, Karen!

— added by Susan Senator on Tuesday, September 22, 2015 at 5:17 pm

I believe during the CNN debate, in response to Trump’s statement, Dr. Ben Carson said that studies validate that vaccines do not cause autism. However, he said it is appropriate to space out vaccinations because of the sheer number kids now receive in early childhood. In interest of fairness, Robert F. Kennedy Jr. has given many interviews and written numerous articles and at least one book advocating that vaccines cause autism. He participated in a recent documentary opposing mandatory vaccinations. I completely agree adult services suck. I think for this situation there is ample blame and ignorance for both political parties, as well as society at large.

— added by Julie on Tuesday, September 22, 2015 at 7:56 pm

Hi Julie, thank you for weighing in. I too wish for a more robust response to this stuff from both sides. Some say Ben Carson should have been much more direct than he was, and they also fault Rand Paul for making this a matter of choice. I know about the Robert F. Kennedy Jr book — in fact my publisher is publishing his latest book. I don’t believe that vaccines cause autism, but I’m trying to make the other point, using the GOP remarks as a jumping off point — something’s gotta give for the autism families and the autistics themselves.

— added by Susan Senator on Tuesday, September 22, 2015 at 8:03 pm

[…] Reprinted with permission. The original can be read here: Trumped-Up Priorities […]

— added by Trumped-Up Priorities - Autism Daily Newscast on Friday, September 25, 2015 at 4:00 pm

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