A Response to Skeptics About Autism, Sensory Processing Disorder, and ADHD

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 )

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15 Comments

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15 responses to “A Response to Skeptics About Autism, Sensory Processing Disorder, and ADHD

  1. Kimberlee Young

    You’re a better person than I. I think I would have spat in that woman’s ignorant face! (I know that isn’t very elegant but that would have really gotten to me!)

  2. Thank you. Just thank you.

  3. Charlie's Mom

    Thank you for this. I have a kid who appears “normal” to most, many people don’t believe that his disability is real. Thankfully his teachers understand who he is, and help him to succeed in school.

  4. Kelly

    thank you for writing this! I have a daughter who to look at you wouldn’t know there was anything wrong! I’m lucky that she goes to a brilliant school! x

  5. thank you! we are going through the process at the moment of having our some assessed for autism and so far from the family we have been told he is just him and leave him alone, little to they realise the day to day stuggle some days to deal with him, and how mundane but full of activities our life has to be to have a day we don’t have a meltdown ( and that has to be everyday).

  6. Heather

    I applaud you for your response to that woman. I am so thankful and overwhelmed by parents like you who gives a parent like me hope about SPD. Two out of my three children have it, both are on very different spectrums. Thank you so very much for your blog and the HOPE you give.

  7. My son just turned five years old. We have run the gambit of testing, and it has been a frustrating two years (we would have started earlier if our previous pediatritians had listened to our concerns.) Finally my son has been diagnosed with ADD/ADHD, PDD-NOS and SPD. Along with Expressive/receptive Language Disorder. It is frustrating to talk to family and friends when they try and say there is nothing wrong with my son = that he is just quirky and does things at his own speed and his own way. I agree – he is just quirky, and does things at his own speed and his own way – BUT!!!! There is so much more to it. There is nothing worse than having my son have a breakdown because his shirt is itching him and can’t figure out why, even after changing his clothes three times. Or have him freak out when his little sister is singing quietly to herself. With his diagnosis a world opened up to me of other parents who have traveled the path we are just beginning. It is nice to know that I have someone who understands why my house is a mess and all I have energy to do is sit and cuddle with my kids.

  8. Lisa

    This really touched me and was just what I needed to hear right now. I’ve been feeling discouraged and inadequate lately in helping my daughter with sensory processing and anxiety issues. You’ve given me extra motivation to educate people about kids with hidden challenges. Thanks!

  9. Clearly the professor’s PhD was not related to autism spectrum disorder research. I am particularly amused at his comment that those of us with autism only live in the US, or that we are being taken advantage of by the pharmaceutical companies. Most of those with autism are not being treated pharmacologically for the autism, per se, but if they are on meds it is for the comorbid conditions or for the way they react to the autism. I have a profile on the AllExperts autism site, and many of those who contact me are from outside the US.

    Unfortunately, there is profound ignorance about autism and related disorders, partly because those of us with ASD are generally not given an opportunity to provide our input about autism (most of us are not good at discovering the “right way” to make contact with those doing the research or at discovering the “proper channels” to follow in our attempts to correct the ignorance that is so ubiquitous throughout the literature) and the majority of the knowledge base is from those observing ASD from the outside looking in. We are told we must become like neurotypicals, yet the more successful we are at doing so the higher the expectations of our “normalcy” and the harder it becomes for us. Rarely do “neurotypicals” genuinely want to understand us. More often our various behaviors (which are reactions to our ASD rather than the ASD itself) are studied, showcased, and analyzed without understanding the bases for them.

    As you know, most of us with autism also have various sensory perceptual difficulties and lack the “social interpreter” that “neurotypicals” take for granted. We often feel like aliens in a world that does not want us even though most of us possess insights and gifts which could benefit the world if we could somehow obtain an audience. Not all difficulties are outwardly obvious. And those with ASD do not disappear when we become adults. Unfortunately, the current treatment foci make it harder and harder for us to function in society as we age, since the tolerance is lessened year by year for those who don’t understand or automatically know why neurotypicals act the way they do. Others make false assumptions about us and misinterpret even the most transparent of us, because we are not like them.

    Bravo for your attempts to stand up for those with SPD and or ASD. I for one appreciate your efforts.

    • I suppose the upside to this dreadful conversation with the professor was that I researched a bit into autism rates internationally. As I suspected, it is on the rise everywhere. Thanks for letting me know about your work. It’s important that we all help each other, globally.

      I so agree that we need to hear more from people on the spectrum!

      And no, the professor’s expertise was not related to autism… or psychology… or health…or neuroscience. Yet the professor was under the illusion that I could not possibly know more about autism, as a layman with 10 years experience reading, communicating, and LISTENING, than the professor did! I was also thrown by the emotional reasoning and lack of critical thinking skills. How anyone could extrapolate from a handful of experiences as a teacher of a few students in a private college who have Asperger’s into being an expert on all people with autism globally is beyond me. Not exactly a display of high level critical thinking skills!

  10. By the way, I’m 52, and novocaine still does not help much with dental procedures. The last time a dentist convinced me to use novocaine instead of gas I had an entire face and neck essentially numb from the injections, someone telling me I “could NOT POSSIBLY still feel that” as I tried not to jerk in avoidance of the pain. It was excruciating.

    • I have noticed that kids, teens, and adults with sensory issues often need more novocaine than most. Be firm when a dentist says, “You can’t possibly feel that.” You know you can! Of course, this means you have to deal with that heavy, fuzzy feeling afterward for quite some time…
      Been there, done that!

    • Maggie mae somma

      Wow, this is me too…..so enlightening !!!!!
      Thank you!!!!

  11. I live in New Zealand in a small city of 74,000 people with a regional population of 120,000. We have a large University (Massey) on our doorstep. My youngest is 9 years old. He has severe classic Kanners type autism. He is one of the most severely affected children in our region. He has massive sensory processing issues and has some of the highest sensory input needs of any child in the region (according to his O.T. ASD co-ordinator, S.L.T. language therapist etc etc etc)
    My point? He exists. He will never go to our local university, he will never drive a car, get married, travel the world, have children of his own, buy his own home. These are facts. I’m not sad about it. I don’t kid myself and wonder or think “well maybe, one day” Why? Because my son is loved, wanted, cherished, he has value, he enriches our lives as we enrich his.
    He does more than exist. He LIVES!
    So PHd, stick that in your American doctorate and shuffle off back to your bookstacks.

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