Many public comments to the federal IACC have stressed the growing crisis in care for adults disabled by severe autism. Here’s one.
“For many people this lack of actual services is purely a ho-hum issue, just a yawn, but for those of us in the trenches, living with and supporting an adult with severe autism, it is an issue of how to stave off the suffering and misery that lie in his future when we can no longer protect him.”
“We tumbled out of American life into the ‘autism abyss,’” writes Martha Gabler. Stock photo
By Martha Gabler
Thank you for this opportunity to comment on issues the public would like to see highlighted in the IACC Strategic Plan for Autism Spectrum Disorder. We have a 25-year old son, [name redacted], who has severe autism, is profoundly nonverbal, and has bouts of self-injurious behavior. He has the independent-living capacity of a 3 1⁄2 year old child; he will require competent and compassionate care 24 hours/day for the rest of his life. We are extremely worried about his future because of the continued and catastrophic lack of services.
I respectfully endorse the two following statements from the 2016-2017 IACC Strategic Plan for Autism Spectrum Disorder and urge that these items be the priority of the IACC:
[…] “Sense of Urgency: We will focus on responding rapidly and efficiently to the needs and challenges of people on the autism spectrum and their families.”
[…]
Sadly, nothing has happened since this report was issued. No high-quality services that address the urgent needs of people on autism spectrum have appeared. This is despite the fact that we have excellent lifespan planning tools, such as Person-Centered-Planning, and excellent behavior management and skill building protocols via Applied Behavior Analysis (ABA). For decades, we have had all the methods and information we need, yet no actual services. And it is now five years later.
For many people this lack of actual services is purely a ho-hum issue, just a yawn, but for those of us in the trenches, living with and supporting an adult with severe autism, it is an issue of how to stave off the suffering and misery that lie in his future when we can no longer protect him.
Unfortunately, autism has been a ho-hum issue for a quarter of a century. My son is now 25 years old. He has experienced 25 years of trauma and neglect due to denial of evidence-based services. When he was diagnosed in 1998, we were stunned to find out that there were absolutely no services to support him and absolutely nobody cared. He was rejected, denied, demeaned, belittled, bullied, and basically shown the door everywhere we went. People could not get us off the phone or out on the street fast enough. We tumbled out of American life and into the “autism abyss.”
[…]
An abyss is a deep, bottomless chasm that separates whoever is at the bottom from whoever is on top. For years we struggled on our own amidst the howling winds, rocks, and coyotes in the abyss; we built a little hovel and eventually made progress with our son. As time passed, we couldn’t help but notice that the abyss was getting more and more crowded. When our son was born, the autism incidence rate was 1 in 500, by the time the 2016 birth cohort came along, the autism incidence rate was 1 in 54. There are a lot of families down here with us.
We also couldn’t help but notice that people on top were finally realizing that there were a lot of people down here in the abyss. We saw big buildings go up along the rim at the top. These buildings had names like: Research, Laws, Regulations, and Policies. But nothing came down the cliff towards us. Then we saw more buildings go up: Awareness, Acceptance, Media, Inclusion, and Community. But still nothing came down the cliff.
We see all kinds of people milling around up there. Sometimes they lean over the edge and point down toward us. We shout up and ask for help for our children. They shrug and walk away. Nobody comes down to us. Nobody asks to see our children. Nobody offers to throw us a rope.
Respected committee members, my family will take care of our son while we are alive and able. But we will soon die or become too old to care for him. He needs competent, compassionate care, and he needs to be protected from ignorance and abuse. If anybody from up top came down and spent some time with him, they would see that he is a pretty nice guy and that he does his best but -- he can’t survive on his own, especially down in the abyss.
Throw us a rope. Now. Please.
Martha Gabler is the mother of a son with severe autism. This statement was submitted to the IACC as a public comment.
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