Autism parents: we’re all in the same boat

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.

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7 thoughts on “Autism parents: we’re all in the same boat

  1. Thank you so much! My son has high functioning autism & I have been feeling this division among parents of kids with disabilities. Yes, my son is reading 4th grade books (at age 5). Yup, he is verbal. Nope this isn’t a walk in the park. It is still hard, still real, still valid, still Autism. My son is amazing, but he still has a real battle ahead that I plan. I plan to be his advocate, teacher, and one day friend.

    I am amazed by you parent of a child with “traditional” autism. You deal with so much. I’m humbled. I’m willing to listen & even help sometimes. What you do is big, but please don’t discount my life easy because your life is harder.

    It is the equivalent of someone who lost a child and spouse trying to invalidate the loss of someone who lost a spouse. Yes, yours is more, but that dose not make what I’m dealing with any less valid or real. As we couldn’t and wouldn’t say your morning your spouse is wrong because you only lost one person, not two like me…. let us likewise not say your child doesn’t have “real” autism, or “it isn’t that bad,” or “compared to my child”…

    Lets not divide. Lets unite.

    • Thanks for your comment, Ashley! It seems that autism in particular is such a hard community to be in sometimes. Is it “with autism” or “autistic?” Are functioning labels offensive? There seems to be so much to divide us. It’s hard enough to just try and help your kid every day! Thanks for reaching out and for your support! Let’s all help each other!

  2. As a community we need to stick together, and help each other, as well as help people to understand better what Autism is all about. Our children are special people who so many just misunderstand and that is a real shame, they have so much to offer if people would just accept and open their eyes.
    Loved your post today and loved reading the comments.
    Keep strong, we can all make this journey together.

    • Thanks so much! If having a child on the spectrum has taught me anything it’s to judge less and love more! I am always preaching to my kids to assume that someone might be fighting a hard battle and let people off the hook!

  3. Thank you so much for sharing this. My 4 yr old son was also diagnosed with high functioning autism. I don’t know how many times I’ve heard the saying “Are you sure he has autism, he seems so normal” or “Maybe you should get a second opinion” and other similar sayings. It can be very frustrating and hurtful, especially when the people who are saying these things are not just coming from people who don’t know me and my son very well but from family and friends as well.

    • Yes! I am so sick of convincing people who don’t really know him (or autism) that he is indeed on the spectrum! I especially hate when teachers (and other people who should know better) try and compare the challenges he faces to their neurotypical kids. “All kids do that…” Ugh! I realize that the challenges of our kids may be different from those who are more severely on the spectrum, but they are challenges nonetheless. How old is your little guy now?

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