When a Woman Suggested How to Make My Son With Autism Look ‘Less Disabled’
These words fell out of her mouth and landed like a slap across my face. This woman, who was on my son’s preschool care team, came to us to discuss loud vocal noises that peers (and staff) found disconcerting. She suggested our son’s self-stimulatory behaviors could prevent him attending outings and also made him highly distinguishable (and thus ostracized) among his peers.
Her reasoning was grounded in practicality; admittedly, I understood on an intellectual level that vocal stims (humming “ahhhhh”) were annoying and might result in my son Quinn’s exclusion from peer groups or social settings. I live with these sounds and they grate on me from time to time. I knew all this. But here’s how I reacted: I hissed at her, “I don’t give a flying #$%^ about making my son look less disabled.” I went on to say that our parenting priorities for our child have little to do with how uncomfortable or irritated his disability might make other people feel.
I explained that our objectives relate little to making Quinn look “less disabled” and are focused on providing him with opportunities to develop and work within his own abilities to learn, grow and be happy. Her insinuation — and I’ve heard it many times — seemed to be that our child should aspire to neurotypical conformity, and failing that, we should do our best to make him invisible and unproblematic.
This insinuation derives from the larger social issues around neurotypical and ableist privilege — or the implicit or explicit understanding that if my child was just a little “more normal” he would be able to participate and enjoy the opportunities that so easily flow to other children. These include friendships, invitations to birthday parties, camps, recreational classes, preschool placements and so on.
But because my child deviates more significantly from the “norm” and is disabled, somehow the expectation is placed upon him to adapt rather than society. I refuse, however, to believe the onus should be on him to stifle his vocal stims as a down payment on the price of admission to the neurotypical club. He will always be disabled; he has classic nonverbal autism. We have every hope, however, that with therapies and support, our son will find his unique place in this world and do so happily.
I wish, however, instead of tossing out an expletive (because no one enjoys being sworn at no matter how sincere the content of the communication), that I had walked way. I wish I could have gathered my lioness-like instincts and channeled them into a more productive discussion. Because this woman is a caring person who would likely have been receptive to my message.
I think she would have empathized with my view that instead of trying to silence the vocal stim, we smile at his joy or assess if he’s overstimulated and needs a quiet room. She likely would have agreed that instead of glaring as a child has a public meltdown, that parents receive offers of assistance. And hopefully she would have been receptive to my plea for a society that instead of begrudging a request for an accommodation, greets these with more kindness and support.
This is the kind of world I want our son to grow up in. The woman who made this comment likely comes from a more realist camp; she knows this isn’t the world we live in. I missed out on my chance to ask her to join me in cultivating better expectations for society, and thus my son. Because I know we both have similar objectives; she wanted Quinn not to stand out to fit in. I want Quinn to stand out and still fit in.
The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.