Severe autism families were not shy this past year, and here’s what they had to say.
Autism families have spoken out, and they are not happy. (Stock image).
By Jill Escher
I’m grateful that in my role as president of National Council on Severe Autism that I’ve been able to connect with thousands of families and professionals in AutismLand about their lives, worries and hopes. And based on what I’ve heard, I think I can sum up 2021 pretty easily, in just five words: so, so sick of it.
Sick of making desperate calls for help, and being told there is nowhere to go.
Sick of the chaos, repair bills, therapy bills, medical bills, marital strife, isolation, the bruises.
Sick of not sleeping.
Sick of a medical system that just doesn’t know what to do with our kids, and a mental health crisis system that says “sorry, we don’t serve autism.”
Sick of getting little support through the pandemic.
Sick of insurance companies that deny treatment for extreme, destructive, and deadly behaviors as not medically necessary.
Sick of knowing that a system that pays staff minimum wage for difficult and demanding jobs is set up to fail.
Sick of hearing their child’s overwhelming neurodevelopmental impairment is just “neurodiversity.”
Sick of reading news stories that repeat ad nauseam that the skyrocketing rate of autism — even limited to severe autism — is merely due to awareness and diagnostic factors, and of seeing that autism now affects about 1 in 44 U.S. children and more than 10% of boys in parts of New Jersey, but that “we must have not noticed this before.”
So, so sick of the anti-vaxxers.
Sick of disability rights militants who work to axe residential and long-term care programs for the most severely disabled Americans under the pretext of advancing their civil rights. Sick of same who de-fund non-competitive employment options, leaving severely autistic adults with zero ability to access employment, limiting their adult lives to mere babysitting, at best.
Sick of the fantasies about autism.
Sick of screams, the broken iPads, the clogged toilets.
Sick of online activists who blame parents for their children’s extreme behaviors, who purport to speak on behalf of our children, who seek to quash realistic images of severe autism online.
Sick of a diagnostic scheme that lumps together articulate law school graduates with mild social eccentricities, Elon Musk, and successful celebrities with our nonverbal adults who function at a preschool level.
Sick of the idea that autism is “gift,” a “different way of being in the world,” or merely a social construct. As much as we adore our children, their neurobiological abnormalities which render them helpless and dependent are hardly gifts or social artifacts.
Sick of the stories of neglect and abuse in group homes and community programs.
Sick of an antiquated system that offers no roadmap for families, leaving them fend for themselves, with only the very wealthiest having hope of creating quality care programs.
Sick of a research agenda that has produced little of consequence to help in the most acute areas of need, such as severe behaviors and long-term care.
Sick of the snake-oil salesmen who prey on desperate families.
Sick of hearing about the importance of “community-based” housing but seeing zero housing vouchers available for our severe kids.
So, so sick of panicking about what will happen to our children when we die, while mainstream autism advocacy seems fixated on trivial matters, or appeasing strident self-advocates.
Now, some will say this is all too bleak, while others will say I’ve only touched the tip of the iceberg. And while I apologize for the mood of despair, I must say that for better of worse, this captures a big slice of reality you’ve shared.
All we can do is march forward, and I know that in 2022 we can make real progress — we are already seeing the pendulum swinging back toward sanity, for example with respect to diagnostic categories, and more attention to the research needs for severe autism. The future of autism, the future for our beloved children and the growing numbers who will follow, will depend on your true stories — thanks for shouting out to NCSA during 2021, and let’s look forward to a 2022 filled with realistic, mature, and fully informed discourse around autism.
Disclaimer: Blogposts on the NCSA blog represent the opinions of the individual authors and not necessarily the views or positions of the NCSA or its board of directors.