For the last few years the month of April has become increasingly plaguing to me. Autism Awareness/Acceptance month creates an uncomfortable rift for me as an interventionist and as a friend. The autism and autistic communities are split and put at odds with each other. The autism community (mostly made up of parents and people who work with children with autism) “lights it up blue” in the name of awareness; puzzle piece symbols, butterflies and “I love someone with autism” graphics flood social media. The autistic community (autistic teens and adults who embrace their neurodiversity), however, has a palpable apprehension and even hatred for the month’s celebration of awareness. They reject being described as “puzzles” to be solved, symbols of positive change and (85% of them at least) reject person-first terminology. Today I’ve been enjoying the re-appropriation of the Autism Speak’s World Autism Awareness Day hashtag, #autismis by autistic adults on Twitter.
As neither a parent of a child with autism, nor an autistic person but as a clinician working with children and a person with neurodiverse friends, I have never really known how to react to Autism Awareness Month. I have tended to lie low and “forget” to wear blue on World Autism Awareness Day. I ask myself, “am I disrespecting the parents who bring their children to see me for speech therapy wearing puzzle piece jewelry and Autism Speaks t-shirts?” “Would my potential blue-wearing disrespect my friends?” But recently it’s hit me- my wardrobe choices and social media posts are hardly the problem and the action I can take that will actually help affect change lies neither in my role as a speech therapist nor as a friend, but as a parent.
A dear friend of mine, Robert Rummel-Hudson, author of Schuyler’s Monster, sent me a draft of a speech he was giving last week. He discussed a question pervasively posed to him about his daughter: “what’s wrong with her?” Schuyler has a rare genetic disorder called polymicrogyria, which she has called her “monster” from a very young age. Rob admits to never knowing quite how to answer the question but concludes that what’s wrong with her are two things: 1) she lives in a world that isn’t ready to employ and develop authentic relationships with her and 2) that “she believes in the world’s capacity to return her love.” Rob and I have talked endlessly about the need for people to be willing to develop genuine and authentic relationships with disabled and neurodiverse individuals but for some reason this hit me hard. I, a usually composed and less emotional person, broke into tears more than once last week.
He’s right- the world isn’t ready to employ and befriend people whose brains and bodies work differently than their own. In this world, different is less. Autistic characters on tv are portrayed poorly and irresponsibly by neurotypical writers and actors, disabled people are used as “inspiration,” Medicare cuts are looming, ADA laws are followed begrudgingly and a movie was nominated for a damned Oscar for makeup for turning a beautiful little boy into a child with a facial disfiguration. I can’t change any of that. But, maybe the next generation can.
My children are healthy, beautiful and neurotypical six-year old twin boys. When I returned to work after maternity leave, I was lucky enough to bring them with me. My workplace, Bridgeway Academy (an education and therapy center for children with autism) has an on-site daycare for babies and when they turn three they are welcomed as neurotypical peers in the classrooms. Pax and Jude spent three years in reverse inclusion before beginning their public school journey. Looking back, this experience was more than convenience for me, more than the academic leg-up that they’d have entering school; they were learning something that might let them change the world: not empathy, helpfulness or patience but a worldview where different doesn’t mean “less,” nonverbal doesn’t mean “stupid” and that anyone can be their friend.
I was wearing one of my Neurodiversity t-shirts one day last week and my kids asked me what it meant. I had a very candid discussion with them, asking them to think about their friends at Bridgeway Academy and tell me how they communicated, showed they were happy or frustrated, their interests and dislikes. We talked about ways they were similar and different and I told them that some of these things could be described as them being neurodiverse. I asked them if their friends’ neurodiversity made them bad, less, stupid or unimportant. The boys dutifully responded “no” to my questions and then sweet Jude added “because they’re all wonders.”
It was then that I realized that my contribution to a world that embraces disability and neurodiversity was not my work or my friendships but was my children. They are and will continue to be authentic friends as they grow older and will be co-workers and maybe employers who can see that different isn’t less.
I’ve written before, pleading for people to be open to authentic relationships with people who are disabled or neurodiverse but today I’m pleading something different and I’m pleading to parents. Please, teach your children that disabled and neurodiverse people should not be objects of pity or inspiration, that authentic relationships lie not in being a “helper” but being one half of a friendship and to appreciate and embrace diverse classrooms, playgrounds, birthday parties and eventually workplaces. Encourage them to ask questions and approach people whose brains and bodies work differently than theirs. I challenge you to go a step further: make playdates with children who are disabled or neurodiverse or consider enrolling your children in educational or recreational programs that involve children with disabilities or autism.
Let’s raise a generation of people who will challenge us to rise above awareness and acceptance and achieve the embracing of diversity.