My Public Comment to the October 2021 IACC Meeting

Selfie of me on a redwood trail  Leo is visible, blurrily, behind me.
Hiking—Always Hiking
[image: Selfie of me on a redwood trail 
Leo is visible, blurrily, behind me.]
I gave a live video public comment (at 1:19:49) at yesterday's IACC meeting, about the need for autism research and resources to serve existing autistic people of all abilities. The comment limit was three minutes, so this is the condensed version of my howling fury over how research is primarily currently sunk into causation and treatment, not quality of life or communication. Will post the video when it becomes available. 


My name is Shannon Rosa. I am the mother of a twenty-year-old high support autistic young man, and senior editor of the autism information and advocacy community Thinking Person's Guide to Autism

My son is a thinking, feeling human being, like you. He deserves a good life. My husband and I love him dearly, enjoy his company, and do our best to help him feel happy, healthy, and safe. 

However, it is challenging for families like ours to give our autistic loved ones those lives they deserve, as current public and private autism efforts focus disproportionately on theoretical unborn autistic people, rather than investing in best support practices for existing autistic people like my son. Per the IACC’s own analyses, autism research funding is primarily funneled into to risk factors and biology, with less than 10% prioritizing lifespan issues and services. I do not understand how this is considered acceptable.

My son and the wider autistic community deserve to be living their best lives, now. They deserve family, caregivers, and therapists who understand how to help autistic people thrive, now. They deserve access to well-trained and -paid educators and support workers, now. They deserve medical professionals versed in best practices for treating autistic people, now. In one year, my son and his peers will age out of the school system—yet no existing federal, state, or local framework exists to transition to or support them in fulfilling and dignified lives as adults. We need those frameworks, now.

Even so, my family is lucky; we have decent autism services in our area, and we have the language, know-how, and socioeconomic advantages needed to access those services. At the same time, we all know that less-advantaged autistic people and their families are missing out on services—partially or entirely—as are autistic people perceived as lower-support than my son, yet who still require significant accommodations. This is unconscionable.

Finally, we need to formally recognize that autism issues must have autistic guidance. My son’s quality of life improved dramatically once we had access to autistic insights on supporting autistic people, and every autistic child and adult in this country deserve the same opportunities and benefits. I applaud the IACC for seating more autistic members, and hope autistic priorities will have a proportional influence on the IACC’s outlook and directions.

Thank you for listening.

Shannon Des Roches Rosa

1 comment:

  1. Fantastic! Loved all the others on the call nodding in agreement.


Respectful disagreement encouraged.