Who Gets to Narrate the Autistic Experience? by Elena Croy, Writer/Editor + National Down Syndrome Society DS Ambassador

One of the most intimidating parts of contributing to Bergen County Moms is the high bar I set for myself: to share the disability parenting experience. I didn’t begin this journey sharing only about parenting my children, which would have been much simpler. Instead, I set out to share more generally about parenting a child with a disability. So what exactly is the difference? 

What came to me as I asked myself this question was wondering how much authority I do or do not have to speak about disability or parenting in general, when my experience is specific to my two children and their friends, and of course overlaid with academic disability studies coursework. I already know better than to claim I know what it’s like to live in a disabled body—those stories are reserved in a sacred space held for self-advocates—but I also know that everyone’s life is unique and precious to them as individuals,  and my son, for example, is no more identical to another 7-year-old neurodivergent boy than I am to any millennial mom of two in Ridgewood. 

Prior to having children, I worked in medical publishing. One important aspect of the industry is understanding how narrow a peer-reviewed study is by nature: there is one topic, one theory explored, one mode of investigation employed. This gives a study power; the focus is like the stiletto point of a shoe tracking precise marks on the ground absorbing the shock of every step. And every time we published a study, that was one single contribution to the larger body of knowledge on a specific medical or systemic subject. The research effort was great, and so was the meticulousness of the editorial process: acquire, manage multiple rounds of peer review, query the author(s), develop supporting images, edit and layout for clarity and readability, and then publish and promote. There was zero room for even the most knowledgeable physician to speak without scientific proof backing his/her claims and a consensus of professionals (“peer review”) behind his or her conclusions. 

Every chapter of every reference title and every article of every journal issue individually pixelated a larger image. In my professional experience, I never encountered an impactful voice that was attempting to speak for an entire group of people, an entire system, or an entire medical diagnosis or field. So how is it that as consumers we spend hours upon hours digesting content from people who claim to know an entire marginalized experience? Big voices speaking without a consensus from varied backgrounds are red flags, and this month of all months, autism is in the crosshairs. 

Nobody has walked in our shoes but us, and we’ve walked in nobody else’s but our own. To know about me or Hope or Henry is only to know about me or Hope or Henry. I implore you to remember this every month you find yourself so graciously clicking into my posts. 

This Autism Acceptance Month, one of the hardest and kindest things we can do is acknowledge that everyone’s experiences are unique to them and that one individual cannot overpower the collective autistic voice. I took from 2020 an understanding that if I have not lived something, I am in no position to invalidate it. However, I expand that now: even if I have lived something, someone else has likely lived the same thing differently. Each is real. Each is valid. Each deserves space to exist. 

What Am I Listening to? 

Yours truly joined The Extra Lucky Podcast for this week’s episode (Season 2, Episode 5) about a new book that was published this spring, The Adaptive Toolkit for Potty Training Children with Disabilities. The podcast episode includes some fun chit-chat about the development process of the book and what went into understanding potty training from all applicable perspectives (and there are many!!). The Telepathy Tapes have also crossed my radar…too soon to judge, but go have some fun! 

What Else Am I Listening to? 

Lots of listening this month! I know I’ve brought it up before, but The Diverg. Podcast is a must listen for anyone who feels morally compelled to hear autistic experiences through autistic lenses. The intro to every episode begins, “Inclusive of autistic and other neurodivergent voices…” What’s more authentic than that?! 

What Am I Reading?

This picture book is lovely, showing a single family in a single day: A Day With No Words, by Tiffany Hammond. The story follows a young autistic boy who uses a tablet to communicate, alongside his mom as they navigate a play day. A read aloud can also be accessed here.

Elena Croy with Hope + Henry | At Her Own Pace

Elena Croy is an ordinary mom learning life’s lessons from her two extraordinary children. She and her husband are raising their little girl, who has Down syndrome, and their son, who was born with upper limb differences, in Ridgewood. Elena chronicles their challenges, triumphs, and goofiness at AtHerOwnPace.com. Elena is proud to serve as a grassroots Down syndrome advocate for the National Down Syndrome Society.