Chasing Autism Acceptance

By: Jennifer Sando

HELLOOO April Autism Acceptance month!  I was very excited when DIG asked me to guest-write their blog this month. I so wanted to write an uplifting blog, telling you that society is on the cusp of autism acceptance. I really wanted to be an optimist.  Then I started writing and realized that my thoughts about autism acceptance this year veer toward the cynical. A once unthinkable thing has happened to me. I’ve become a pessimist.

For background, I have three gorgeous kids with autism.  All three have communication that is very significantly affected by the disorder.  My oldest child was diagnosed way back in 2008, my middle child in 2011 and my youngest in 2015. They largely communicate through gestures, pictures and typing. I thought that although my kids were initially separated from their typical counterparts (always busy with therapies and unable to speak to the other kids), that they would eventually be integrated fully into the community. Instead I have found the opposite, at least when it comes to my children. The world actually becomes more segregated, less accessible as they age.

Schools included them in preschool programs, then slowly began to segregate them for most of the day, first in different classrooms, then in different buildings all together.  Nonprofits and extra-curricular activities that focus on inclusion are more equipped to handle children less impacted by autism and who are able to talk.  They find my children’s needs are too intensive for their skill set.

I used to be determined to include my kids at restaurants, in travel, at the theater and parks.  I returned home at times feeling like it wasn’t worth it.  I was exhausted and the kids were not happy. My children can be loud, especially in quiet places (think churches or libraries).  They love a good echo.  They  jump, spin and dart away.  They often try to connect with people by touching them and that does not go over well.  We get smiles (thank you for those), but we also get stares. And rude comments. My daughter has this thing she does where she looks up out of the corner of her eye and then blinks repeatedly.  A lot of well-meaning people ask her things like “Honey, Are you alright?”  I thought she didn’t notice? But, she does.  She’s plays a game on her iPad communication system in which, she presses button to have a conversation.

The conversation goes like this:

She presses the first iPad Button: “Are you ok?”

She presses the second iPad Button: “Yes, I am fine.”

I’m realizing that the fight to include my kids in their community is seeping out of me. I’ve started closing off our world a tiny bit with each bad experience. First, I vowed not to fly on airplanes anymore, then not to go to the movies, then to avoiding gatherings with friends, then avoiding spending holidays with family.  Our world gets smaller and smaller.

I have a dream where I move my with my children and my husband to an island. The world is tiny and easy.  I am always with my five favorite people with no societal judgement.  Then,  I realize that humans crave connection with other humans.  I crave connection. My husband craves connection.  My children crave connection. It would be unfair to limit my kids’ connection, because humans are hard-wired to enjoy the company of other humans.  We just have to figure out novels ways to get that connection.

I realize as I write that I also have a problem with autism acceptance. I need to accept that pushing for my kid’s inclusion in society is not a choice, it is necessary to live. Having them excluded is not only unacceptable, it is inhumane.  I will learn to accept discomfort, setbacks, and fatigue, because no other option exists for us.   I will keep bringing my kids out in the world, if not out of a sense of optimism, then out of a sense of defiance. I will make their world bigger.

Maybe then by next April, we will have gone back to holidays, gone back to the movies.  Heck, maybe we’ll go crazy and go on an airplane. I will find the world more welcoming to us.  I will ignore the stares (or just stare back). I will be grateful for the smiles.  Check in with me next Autism Acceptance month, maybe but then, I will have become an optimist.