Friday, April 28, 2017

About That "Coming Avalanche" of Autistic Adults...

Greg Love
ageofneurodiversityblog.wordpress.com

wave coast
Waves in Santa Cruz, California. © Wonderlane, Creative Commons
[image: Ocean waves breaking on a rocky shore.]
It is currently autism “awareness” month, that time of year when autistic people are told that they are costly and burdensome, that they ruin families, and—even worse—that they’re growing in numbers (oh, the horror.) A petition has even circulated, since Donald Trump took over the White House, claiming autism must be declared a "public health emergency."

While these ideas remain disturbingly common, some parents are changing their tune, albeit unfortunately not in ways that actually diverge from “awareness.” Nowadays, parents and professionals are increasingly alarmed at the incoming “avalanche” of autistic adults who will be ill-prepared for the lack of services and supports after high school.

It is true that the world scarcely cares to accommodate the support needs of autistic adults—yet at the same time it can no longer just “disappear” those adults into institutions like it used to. We have the disability rights movement to thank for winning important reforms over the last several decades, mandating access to the same education options available to non-disabled people. Basic civil rights like non-discrimination in public and private institutions and services, in hiring, in residential facilities, etc., had to be demanded before what should be considered routine accommodations were mandated by law.

Many autistic adults require access to—and deserve—quality services and support to guarantee that their basic needs are met, and to allow for full inclusion into their communities. But those services and supports simply do not exist in most communities. And being fully aware of this problem does not justify using the bigoted language of “awareness” to scare everyone into action.

I have a question. It is a question seldom asked by the “autism community” of non-autistic parents and “experts.” Why do we have this scarcity of services and support for adults? I’m not exaggerating. This simple question is never adequately addressed, if it is asked at all. When it is asked by some parents and professionals, it is erroneously framed as being based around an assumption, that this state of affairs was always going to exist because the world has yet to catch up with the reality of the “epidemic” at their doorsteps.

On the contrary, this is what I see: there is no incoming “avalanche” of autistic adults. There is simply autistic adults who would have always been born, who would have always existed whether or not services and support were available to them.

This is what I see: an “autism industrial complex” that has emerged in recent decades, with its purpose being the development of “treatments,” and locating the source of autism, to possibly cure it.

This is what I see: in childhood, an overwhelming focus on Early Intervention, extending as far back as two years of age or earlier, with therapies that are justified on the basis of teaching “skills” but which frequently consist of behavioral modification, compliance-training, and normalization.

This is what I see: a tunnel-visioned focus on autism as a childhood disorder that erases any notion that these children will grow up into autistic adults, with decidedly adult needs.

This is what I do not see: any ability on the part of the “autism community” to connect the dots, so to speak. While this community of non-autistic parents and professionals stumbles to come up with answers to the oncoming “crisis” of autistic adults, autistic adults are already here and have a lot to say about it.

Perhaps we ought to start with the obvious question: why is it that you continually separate the way autistic children are treated and the way autistic adults are treated? These are not separable issues. Autistic children are treated as “fixable” or amenable to “recovery” with intensive Early Intervention as early as age two. The “autism community” says that they should be subjected to hours upon hours of therapy to reduce “problem behaviors” and learn “skills.” This community believes that the only hope for autistic people is through experimental social engineering therapy that seeks an unmistakable goal of autistic erasure.

How can the needs of autistic people across their lifespan ever be properly addressed when so much money and energy goes into erasing their neurology before they ever reach adulthood? Meeting the needs of autistic people across the duration of their lives is incompatible with seeing them grudgingly as human beings after they’ve been through years of therapy and behavior modification and—shocker!—came out autistic in the end anyway.

So is there really an “avalanche” of autistic adults coming? Parent of an adult autistic daughter Cindy Godwin believes so, and she also doesn’t hold back on the insulting, pathologizing, and fear-mongering language that usually accompanies “awareness”:
“As the number of autistic children grows, so does the number of autistic adults. Their needs remain much the same as they age, yet the support they once received fades. Though families like mine are feeling it most acutely, this is an issue for everyone to consider. The tsunami of adults with autism is coming.”
We’ve now graduated from an avalanche to an even scarier and more devastating “tsunami.” She prefaces her piece by reminding her audience that “autistic children never really grow up.” So what do we do with these children in adult bodies?

She describes the “scene” found at her daughter’s town home, because boundaries like privacy need not be observed when it comes to your autistic kids. Her daughter may be almost thirty years old, but her mother considers her too "feeble-minded" to have any concept of privacy, and describes her daughter's executive functioning disabilities as though the young woman is a human zoo exhibit displaying "the autistic adult in its natural environment," for millions of people to read:
“She’s sitting on the sofa playing video games. Dirty dishes are everywhere in the kitchen, pizza boxes and empty soda bottles cover the countertops, the trash is overflowing and stinks, the patio is littered with cigarette butts, laundry needing to be done is stuffed into black garbage bags. The notice of a certified letter, announcing that she has been dropped from her therapeutic art program for non-attendance, sits on top of a stack of unopened mail and unread handouts from her counselor. 
"This was the scene I walked in on recently. “She” is my 29-year-old daughter.”
This mom, who states she “suffers combat level stress daily,” along with hundreds of thousands of other parents, evidently equates executive functioning disabilities with immaturity. Remember, “autistic children never really grow up.” As an autistic adult with similar executive functioning disabilities, I find Godwin's description of her daughter beyond insulting, but also realize it is standard fare coming from the “awareness” community.

To be fair, not all parents are fixated on the standard impending crisis and tragedy narrative. Father of an autistic son Raquel Regalado published a recent short piece entitled Time for Autism Awareness to Grow Up.
“As the parent of an autistic teen I can attest to the old axiom, “little kids, little problems, big kids, big problems.” And while we appreciate the social and developmental gains our children have made, the older they get the harder it becomes to find services, programing and opportunities for them because funding and public opinion is fixated on early signs and intervention.”
He is absolutely correct when he says, “funding and public opinion is fixated on early signs and intervention.” Let me be clear: this must be the starting point for the divided autistic community and autism community to find common ground in discussing the needs of autistic adults.

But there is an alternative to seeing this as an “avalanche,” and there is certainly no justification for using dehumanizing and pathologizing language to describe a problem that no autistic adult had any part in creating.

Autistic adults do face a severe lack of services and support. But they also regularly face an “avalanche” of bigotry from non-autistic parents and experts, and even the President of the United States, plus anti-vaccine cure cultists, Early Intervention and ABA social engineering conversion therapists, and a highly influential international organization that makes a lot of money but has little intention of using it to address the most important needs of autistic people and their families.

But let us say that there is an avalanche of autistic adults. I welcome it. Because autistic adults are adults, not children in adult bodies, and the failure to meet their needs as adults creates a space for them to begin advocating for the services and support they need. And more than advocating, but demanding it.

Unlike so many other parents, I don’t see myself as the “voice” of my own autistic son. When he grows up, he grows up into an autistic adult, and no matter his communication challenges (he is non-verbal now, but he’s also three years old), he can learn to advocate for himself along with other autistic adults.

Autistic adults are only a “crisis” when autism itself is understood as a crisis. There is only an “avalanche” of autistic adults when autistic children are understood as an “epidemic.” Accepting autistic people as autistic people, and allowing them the same self-determination that every other person has a right to regardless of their support needs, will turn this bogus avalanche into a simple issue of human rights. Never again should any person, based on their different neurology and disability, be described in this way.

Accept autistic children as autistic children and there will not be an avalanche, only a need to make certain that autistic children grow up to be autistic adults with their adult needs met, and fully accommodated.

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A version of this essay was previously published at ageofneurodiversityblog.wordpress.com.