What if the pieces don't fit?

I just threw out an over-worn pair of leggings. They were one of many purchases I made on discovering that I had a child with something (in this case, autism). The leggings are black, decorated with those brightly colored puzzle pieces widely recognized as the symbol of autism. I used to have other articles of clothing with that same design, and I have thrown those out too. I bought them in an attempt to accept my daughter’s situation, to prove that I was not a Mom In Denial.

Now, several years of research, advocacy and reflection later, I am comfortable making it known that I am uneasy with the messages behind this symbol. The rainbow-bright colors signify hope for “normal lives” and “effective treatments”; the puzzle piece is intended as an attempt to communicate the diversity of “symptoms” presented by people with this “disease,” or “disorder.”

My unease finds validation in the reactions of those who know most about autism: those who have themselves received the diagnosis. In a piece entitled The Ableist History of the Puzzle Piece Symbol for Autism, Cassandra Crosman explains that many people in the autism community find this symbol infantilizing and pathologizing. As shocking as it may seem, they don’t want to be fixed. https://intheloopaboutneurodiversity.wordpress.com/2019/03/20/the-ableist-history-of-the-puzzle-piece-symbol-for-autism/

Let me set up a thought experiment. Homosexuality was once in the Diagnostic and Statistical Manual of Mental Disorders (DSM). It entered the tome in 1968; was debated and revised in 1973; and completely exited only in 1987 – the year I started college. https://www.psychologytoday.com/us/blog/hide-and-seek/201509/when-homosexuality-stopped-being-mental-disorder

Although I still feel like a college student, I have to concede that 1987 was 34 years ago. Now imagine it’s 2055, and the DSM does not include autism; that it is seen as a variant in our neural pathways, and not a mental disorder. We smile when we see same-sex couples holding hands; imagine accepting a range of prosodies and electronic devices as accepted forms of communication. We dance at the weddings of two brides or two grooms; imagine letting people choose whether or not to make eye contact, hug or shake hands. Imagine giving students the time they need to complete one task before going on to the next. Imagine not expecting all young children to play and interact in the same way.

Alix Spiegel concludes her 2002 episode of This American Life on the topic of homosexuality and the DSM with the observation that change came about as a result of scientific debate, yes, and also “because psychiatrists met people who were gay.” https://www.thisamericanlife.org/archive?keyword=homosexuality%20dsm

Imagine if educators met people with autism. And by “met”, I don’t mean allowed into their classes. We need to approach our students with a willingness to have our minds changed, rather than our checklists completed. I have friends whose professional lives have been shaped by their siblings and friends with autism.

Of course the autism and LGBTQIA+ communities are not completely analogous. Autism features a complex constellation of traits, some of which make for relational challenges. But not all relational challenges are created equal. With my daughter, I make an explicit distinction between behaviors that cause others harm of any kind, and behaviors that are rejected by our culture but are harmless. Her filter-less comments can be hurtful, for example. Math is easy for her, and she has been known to ask incredulously why a friend can’t complete a particular calculation in her head. Lack of eye contact and monologues about movies are in a different category. They may be annoying, but they are not harmful, and if they irritate us, we need to ask ourselves why.

In inviting you to participate in my 2055 thought experiment. I am not asking for agreement. On the contrary, I would be delighted to receive respectful pushback in the comments. What I am requesting is that you dig deep. Ask yourself how you feel when someone doesn’t make eye contact with you, and why you feel that way. Ask yourself what you could sacrifice to make more space for people with sensory sensitivities. Do we need crowded malls, strobe lighting, or to have our greetings acknowledged right away? Ask yourself what could happen if it turned out that the human brain is evolving in the direction of the autism model. That, my friends, is the work of inclusion.

I would definitely throw out any leggings (or leg warmers) that I acquired in the late ‘80s. And I am sure that if I want to know what to wear in 2055, I will ask my daughter, as I do now.