A Conversation Between a Parent of a Child With Autism and an Autistic Adult

My friend, Debbie Abbs, and I had a conversation about autistic perspectives on autism and how autistic voices are often excluded. I am autistic and we talked about how I train police officers on autism. Usually, I get in front of a room full of police officers and discuss autism with a friend, who is a police officer. This “one-on-one approach” helps build connections and understanding between the officers and me. Debbie and I had a talk about the autism awareness movement and how we can include autistic voices, and we took a similar approach when writing this piece.

Deb: I’ve lit it up blue with the best of them.

A couple of years back, I challenged my friend and new author, Diane Kim, who also has a child with autism, to a hair duel before April 2nd hit. I’m proud to say I won. My friend’s daughter dyed half of my hair a vibrant, royal blue so I could be the champion!

Having a 13-year-old son with autism who is mostly nonverbal, I’m glad to know I’m not alone when it comes to both the blessings and challenges of being an autism mom. While my neurotypical 18-year-old, Brandon, doesn’t enjoy communicating with me very much these days, Luke loves to use his iPad to ask me for his favorite foods, tell me he wants to go outside, have a bath, or that he loves Jesus. He hasn’t yet been able to tell me how he feels and what he thinks about other topics, like “Light it Up Blue.” I look forward to the day he can.

But I’m learning from friends like Carlyle who are autistic, that the whole April being Autism Awareness Month thing pretty much stinks.

Carlyle: I can certainly understand wanting to make some noise and draw attention to those of us who struggle and are left out.

Historically, such awareness efforts focused on how autistic people are broken and need to be fixed. My friend Aime, who is autistic and has an autistic child, put it this way: “I just wish it was focused more on acceptance and educating non-autistics from an autistic perspective. Not what neurotypicals assume an autistic perspective is. I also feel like what it really ends up being is a pity party for the parents of autistics and that those inspirational whatevers are aimed more towards them, making them ‘heroes’ for the hard work they put in as parents. Which yes, they should be credited for. But nobody ever considers the hard work that autistics have to put in every day just to get by. I don’t know. I hate all of it. I don’t feel like any of it is done with the right intentions. It’s the problem with an ‘event’ being created for autistics by non-autistics.”

Deb: So Carlyle, how can we make some noise and draw attention to autism but not show those with autism as broken and needing to be fixed? And without using what Stella Young, disability rights activist and comedian, (now deceased) called “Inspiration Porn?” I admit I am inspired by many folks with autism and other disabilities, since so many have overcome huge obstacles. Does that mean I have an IP problem?

Carlyle: I think it’s OK to be inspired by autistic people, as well as by others with disabilities. The problem comes when a person or a situation is viewed as inspiring primarily because of a disability.

My favorite examples include images of guys in wheelchairs doing pull-ups, or popular kids getting attention for taking disabled classmates to prom. Neither of these things is particularly noteworthy. Many people do pull-ups or take dates to the prom without any special applause.

On the other hand, for fans of the race, riding a motorcycle in the Baja 500 is something to celebrate. One of the riders in 2007 was a wheelchair user. His fans should certainly be proud of him and cheer him on. The problem comes when, as Stella said in her TED Talk: “We’re objectifying disabled people for the benefit of nondisabled people. The purpose of these images is to inspire you, to motivate you, so that we can look at them and think, ‘Well, however bad my life is, it could be worse. I could be that person.’”

Deb: That makes sense. We can give credit where credit is really due and be inspired by something that is truly inspiring. Otherwise it’s kind of like giving trophies out to every kid in a sport instead of just the ones who actually won. Which, by the way, I don’t like. And no objectifying of people with disabilities for our own gain. Am I getting this? Also, intention matters.

Back to Autism Awareness Day and really all of April. As a parent of a child with autism, how can I take part in a respectful way? And what can we — as parents of an autistic child who don’t have autism ourselves — do to help autistic adults be heard?

Carlyle: Mere awareness does not promote understanding or growth. What we are asking for instead is acceptance. Love us as we are. Connect with us and get to know us. Tell us what you love about us. The overwhelming message we get from the world is that we are unacceptable and even unlovable as we are. Celebrate those connections and the resulting friendships. Celebrate the successes of your autistic friends with them. This last part is important, because this is how you avoid the inspiration porn. Inspiration porn happens when you use a disabled person’s image or story to make you feel good. Celebrating successes with a friend makes you both feel good. That’s what is missing from it all: relationships.