As a part of the Autistic Self Advocacy Network’s 2024 gala, we have the honor to share and uplift our remarkable awardees’ words and their service to the self-advocacy and disability community. We will be sharing their remarks for the first few months of 2025.
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ASAN was founded in November 2006. At that time, my non-speaking autistic son with intellectual disability had just turned six.
At that time, mainstream media coverage of autism was a relentless onslaught of negativity and fear mongering, and Andrew Wakefield’s attempt to link autism with vaccines had not yet been exposed as a mercenary fraud.
At that time, I was emerging from the thrall of the autism pseudoscience industry and its lucrative supplements and diet nonsense, but was still not vaccinating my children due to the aforementioned Wakefield vaccine-autism hoaxery.
At that time, I was a Mommy Blogger with a reasonable audience as well as a Yahoo! autism parent groups devotee, and so was both absorbing autism misinformation and also resharing it with people who also didn’t know any better.
At this time, I have many regrets over that phase of my parenting, about how gullible and ignorant I was. And yet it’s difficult to imagine how I could have made better choices, when the entire suite of autism supports and information available to me were not only wrongheaded but stigma-centric.
With the founding of ASAN, that information and advocacy model changed. And parents like me can opt for better choices.
I am so grateful that, thanks to ASAN, today’s parents of autistic children have access to not just better information, but autistic-informed resources like ASAN’s Start Here parent guide to help those children live enriched, supported, thriving lives.
If, when my son was first diagnosed with autism at age three, I had had access to such a parent guide, I would have known that autism was the way my son’s brain was wired, as opposed to believing the ginned-up vaccine brain injury theory that had me viewing my lovely little curly-haired boy as broken and in need of repair, rather than deserving of respectful, careful, tailored supports and accommodations.
I would have known to push back on diagnosticians and professionals who had me treating my sparkly-eyed little guy as a medical experiment or therapy project, rather than an exuberant child who needed time in his day to run free and process being himself.
I would have known to correct professionals who had no problem speaking in front of my friendly, cheerful son as though he was inert, rather than an emotional resonator who instantly absorbs others’ intent and attitude—regardless of whether he can parse every word being said about him.
I would have known to question practices like ABA therapy, which, though run by kind people who sincerely wanted to help my son, nevertheless had him doing 40 hours per week of repetitive, mindless seated drills as a three-year-old child—something that, developmentally, no child of any age should be expected to comply with, regardless of their neurology.
I would have known to spend my time understanding not only what autism can mean in general, but what it means specifically for my boy, like knowing to give him a few beats to process interactions. Knowing that it’s unreasonable to expect him to tolerate loud, bustling crowds or loud crying. Knowing that being exuberantly kinetic, finding routines, finding the right fidgets, having the space for stimming, and having “same foods” brings him joy and makes him feel safe and loved.
I would have known to pursue full communication options rather than focusing solely on spoken language, or on “unlocking” him.
I would have done a better job, I hope, of seeing the autistic child in front of me instead of the “hidden” or “broken” autistic child in need of remolding or even “curing.”
I would have done a better job, I hope.
I have done a better job, I believe, since getting to know and being influenced by ASAN staffers and eventual mentors like Ari Ne’eman, Julia Bascom, Zoe Gross, Sam Crane, and Noor Pervez who helped me see, reexamine, and reshape my parenting approaches.
I think my son has a better life now. I think I have a better life now. I think my family has a better life now. I think a LOT of families have better lives now, thanks to ASAN and its advocacy for autistic people and their families.
While I am honored to receive an award from ASAN, all of the above is to say that, from my perspective, the kudos flow the other way. I am so grateful that ASAN exists, and especially that It has helped reshape the pathways for how families like mine can navigate this world that is otherwise so hostile to autistic humans and those who love them.