I recently read a post from a fellow autism parent blogger about “pulling back the curtain on autism.” In his post, “Autism Daddy” spoke of the disservice the mainstream media does for autism awareness. The only stories it publishes are those of a “high functioning kid doing something profound.” He didn’t appreciate what this “awareness” does to the name of autism (his son is non-verbal and has “classic autism”). I spoke of this injustice as well in my post “What if my autistic kid’s video never goes viral” and although my child is verbal and has “high functioning autism,” our sentiments were similar.
But one thing “Autism Daddy” said really struck a chord with me. He referenced the “Quirky American Idol kid” and said that if we are “fundraising or trying to get more government $$ for autism if all people know are the feel good stories…’why give them research $$, they’re just quirky kids.'” I agree with him to a certain extent. I agree that the media’s exploitation, if you will, of these kids’ successes gives a false sense of normalcy to our children’s disorders, but I feel like his giving the label “quirky” to a high functioning autism is just insulting.
To say that my child’s autism is merely “quirky” negates his challenges and struggles. “Quirky” makes it sound like my son’s autism is merely social anxiety, and I assure you, it is not. “Approximating typical” by “30 days of autism” is one of the best articles I’ve read about this topic. It sheds some light on the invisibility of this disability for those who don’t live with high functioning autism every day. I don’t pretend to understand classic autism in the way a parent who lives it every day does, and I see the need for understanding and acceptance of all forms of autism. But it insults my child’s disability to make “high functioning” sound like it’s Autism Lite.
The “Autism Awareness” ribbon on my car doesn’t clarify, “but my kid has the high functioning kind.” I am trying to raise awareness for ALL kinds of autism. Our autism may be dissimilar to the severe, non-verbal kind, but it is still very real and challenging and pervasive, despite being labeled “high functioning.” ALL of our kids are the faces of autism, high functioning, severe, non-verbal and everywhere in between.
Autism is a tricky disorder. Doctors understand it, we parents understand what it means in our own children, but the public in general doesn’t have a clue (and I’m pretty sure that was Autism Daddy’s point). We’ve all heard it said, “If you know one kid with autism, then you know one kid with autism.” There is no one thing that every kid with autism does or doesn’t do. Most of us parents can only see the world of autism through our child’s own very specific lens. So, when we see another child doing something different from our child, it is easy to say “that’s not our autism.” But like it or not, until the diagnostic criteria changes again, there are obviously a lot of professionals who think that the “high functioning” kids (or the “quirky” ones) and the severe, non-verbal kids still share the same characteristics to some extent. Though their struggles and challenges may be disparate, they stand afflicted on the same spectrum.
My child’s autism may not be as visible as other’s, but it is still there. To level his disability down to being “quirky” is just not accurate. He still has sensory processing disorder, ADHD, OCD, anxiety and a whole host of other communication and emotional difficulties that come under the “Autism Spectrum” umbrella. “Outrunning the Storm,” spoke so palpably about this when she had a friend say to her “oh, he has Asperger’s I thought he had autism.” We, as autism parents, need to support and embrace each other instead of dividing the camp. As with any disorder or disability, there are varying degrees of it, but the struggles we face as parents are similar. We have all had to re-adjust our perspective… mourn the “loss of normal”… felt alone… felt angry… and wanted to give up. We, as an autism community, need to support one another in any way we can.
I agree with “Autism Daddy,” the curtain of autism does need to be pulled back. I always say, I would love for an Autism Speaks commercial to include a clip of a child having a meltdown or a child stimming or the view through the eyes and ears of sensory overload or the myriad of other “real” things our kids do everyday. That would do much more for understanding autism than saying “it” happens to 1 in 88. But until then, let’s all just agree to pick up a paddle and start rowing in the name of autism acceptance for our children… because we are all in the same boat.
Author’s note: For what it’s worth, there are other heartwarming stories about autism that aren’t just about the “quirky Asperger’s kids.” I mentioned some of them in my post , but some of those kids have (or had the diagnosis earlier in their lives) classic autism. It’s ok to accept what your child can and can’t do, but the message I like to see in those stories is just to never give up hope for igniting a spark. The media may be a little exploitative, but we’ve come a long way from when the only understanding of autism was from Rain Man.