Recently, a person with a PhD in the humanities, who is chair of a department at a prestigious private university, said to me, “You’re wasting your time talking to people online about autism. Autism doesn’t exist outside of the United States. The rising number of cases is just another example of mass hysteria, people convincing themselves that there’s a problem and the pharmaceutical companies taking advantage of them. We always had people with autism and they got jobs. The only issue is that now you need a college degree to get a job so parents are pushing schools to give their kids more help when it’s their responsibility to do the extra work their kids need.”
I was incredulous and went into my logical brain. I tried to convince her that perhaps my ten years of reading the news and research on sensory issues, ADHD, and autism, and listening to parents of children with autism and related conditions talk about their struggles, might give SOME weight to my opinion and take me out of the category of “hysterical” parents. Later, I asked some people in the hidden disabilities community if they thought I should educate her by sending her some links. The consensus was not to bother, because anyone with such an extreme position and unwillingness to admit that she was not the expert of all time as a result of having met one or two college students with Asperger’s wasn’t worth the effort when there are so many people eager for and appreciative of guidance and support. A close friend said to me I shouldn’t feel insulted so much as sorry for this person, who clearly couldn’t appreciate my passion for educating and inspiring other parents and the professionals who work with their kids. I don’t know if it was actually Eleanor Roosevelt who said this, but I’ve always loved the quote, “No one can make you feel inferior without your consent”! (At one point, I asked, “So you think my work is stupid and pathetic?” She did not contradict me but continued her diatribe. To my credit, I did laugh at the audacity of her non-response!)
“Do you even get paid for the work you’re doing?” the PhD asked me.
My gut dropped. I had, after all, just lost two freelance jobs worth five months’ income in the last week and had been “singing a happy tune” to try to prevent panic for days.
“No,” I answered. “Well, I make enough money selling Amazon.com items through my website to pay my hosting fees. And I earn about 48 cents for each copy of my book sold. But sending out my newsletter, advising people online—no, I don’t get compensated for any of that.”
The PhD’s eyeballs rolled. “Your son doesn’t even have autism.”
“Yeah, but his issues overlap autism, and SO many kids with SPD also have autism! I want to better understand the special challenges of kids with other hidden disabilities so I’m more sensitive when I advise parents. And besides, isn’t there some value in giving back when you have so much information and insight that can help others?”
The PhD had no answer for that. I suppose information and insight about something that doesn’t exist except in the minds of neurotic U.S. parents doesn’t have much value!!!!!!
It’s funny—so often, parents of neurotypical kids try to one up each other, comparing whose child meet their developmental goalposts first, whose child is more extroverted (so highly valued in our culture), or who said something so intelligent that surely he’s a shoo in for an Ivy League school. Maybe that’s why someone who doesn’t know us parents of kids with hidden disabilities thinks we’re all obsessing over college. In ten years of being in online support groups for parents of kids with sensory processing disorder, I’ve never experienced a parent trying to one up another. Ever. Nor have I ever experienced it with parents in my community who have kids with hidden disabilities. Now, we do congratulate each other when someone’s child consents to a dental procedure with Novocain for the first time, or ties his shoes by himself at age nine, or goes an entire day without wetting the Pull-Up even though he’s eight—because we know how much effort went into achieving that milestone. And maybe we can’t find the time to play the “one up” game because we’re too busy trying to get that homework assignment to travel from the homework folder to the teacher’s desk without showing up at school to make that happen, ensuring that our child will get credit, a grade that isn’t a demoralizing F, and feedback we can use to help her work on her language disability that keeps tripping her up.
I feel I lucked out by getting connected to parents for whom parenting isn’t a competition so much as a collaboration—between Mom, Dad, grandparents and other caregivers, teachers, therapists, other parents who can share their wisdom, and of course, our wonderful kids. We cheer each other on and help each other out. I’ve seen parents join support groups desperate for answers and for someone to say, “I’ve been there. You’re doing great!” only to pass forward that message to another newbie when they’ve found their “sea legs” as a parent of a child with a hidden disability.
I could post here a bunch of links showing that autism is on the rise in many countries, that many experts debunk the idea that diagnostic changes alone are responsible for those rises. I could also post links to research articles and news pieces about breakthroughs in understanding and treating sensory issues and autism, which many of you know I post on the Facebook page for the book Raising a Sensory Smart Child whenever I come across them. I love to participate in conversations about how we can best help our kids shine in a world where “quirky” doesn’t always fit in so neatly, and how we can keep our spirits up when we’re feeling misunderstood, frustrated, or worn out. At the same time, I have to balance that with enjoying my own family, helping my son get the extra help he needs, running my business, and being good to myself. So I’ll let the skeptics check out the book’s Facebook page, use a search engine, and do their own work to convince themselves that we parents of kids with sensory issues, ADHD, and autism are not dealing with “mass hysteria” and aren’t being “duped by the pharmaceutical companies” into imagining our kids need help. And I’ll choose to feel sorry for those who don’t know what a joy it is to have a quirky kid and a slew of supporters cheering you on whenever you feel discouraged. Thank you to ALL of you who participate in this marvelous community of people who care about kids with hidden disabilities. I know you’re out there and I appreciate you!
(Okay, I can’t help myself. Here are some helpful links for finding support groups and resources for your quirky kid: http://www.sensorysmartparent.com/websites.html )