Shannon Des Roches Rosa
|Leo making me make fart noises, because that is never not funny to him.
[image: Photo of the author’s teen son squeezing her cheeks so she will make
a raspberry sound with her mouth. Both are wearing hats, outdoors.]
Last week my son Leo and I had a pleasant arm-in-arm walk* around a fancy shopping center while his sibling was at an appointment. We strolled past the coin collector’s shop and the jodhpurs boutique, then popped into the housewares store—just in case they had any unintentionally awesome fidget toys (which, being gadget central, of course they did).
Finding delight in utilitarian objects is part of what being autistic means for my son. Another part is being a traveling one-person party. I go with his flow, as long as he’s not being disruptive. So as we wound our way past the store’s racks of remarkably specialized cooking items, and just as I was getting worried about the audibility of Leo’s new-fidget-propelled joy, one of the cashiers called out, “Hey guys, how are you doing?”
His tone that made it clear to us as well as to any shoppers in earshot that he was glad we were there, and also that he was on deck if we needed him. I exhaled. When we checked out, he addressed Leo cheerfully and directly but did not demand a response, and in general made us feel respected, comfortable, and welcome.
That cashier’s attitude? It is what I want most from society, for Leo: Other people accepting my son on his terms, and letting him know he’s considered part of the community. I wish such attitudes were more common, so that I could feel less anxious about Leo’s safety and well-being as he moves through the world now, and also in his future without me and his father by his side.
But this accepting attitude is not reality for most autistic people, whether or not they share Leo’s intensive needs. Leo and his autistic community members tend to encounter disinterest, misunderstanding, or outright hostility from society—sometimes even within their own families. This negativity takes root because mainstream messages and resources about autism tend to center on autistic people as strange and pitiful and burdensome and in need of fixing or curing, rather than on understanding autistic experiences and communication.
Unfortunately, most people and parents don’t know how to find their way past this bad autism information. The result is too many autistic kids spending their lives misunderstood and mistreated, and as a result acting out in frustration. Their behavior is then perceived as non-compliance, and the kids get punished for “misbehaving.” And then the parents publicly complain about the kids, focusing on how awful autism is for the parents rather than on the tragedy of autistic kids’ needs being overlooked. It’s an avoidable cycle of misery for the children and parents alike.
Still, I can’t blame parents in my position for being pissed off in general, because our kids’ and families’ rights, supports, and services needs are rarely sufficiently addressed: We all feel disenfranchised, because we all are disenfranchised. But this sorry state of things is also why, as non-disabled parent, I look to developmental disability organizations like The Autistic Self Advocacy Network, ADAPT, and The Arc for their insider experience and knowledge about how to address that disenfranchisement. I am grateful to these organizations for how long and hard they have been fighting for rights and services for people of all ages and abilities, and in ways that we parents need to recognize, respect, and get behind.
And this is why I am so dismayed by parent-run organizations that actively oppose autistic self-advocacy leadership on autism issues. The latest example is the self-proclaimed National Council on Severe Autism (NCSA), which is not only out of step with the positions of nearly every other rights- and services-oriented developmental disability organization, but promotes a cluster of fallacies: that severe (i.e., high support) autism is being ignored; that autistic children suffer from autism rather than from having their autistic needs misunderstood or penalized, or having been subjected to traumatizing normalization therapies; that segregated housing is in autistic people’s best interests and should be allotted Medicaid funds earmarked for community-based housing; that eugenics is sometimes okay and so are restraints and seclusion; that autism is an epidemic, and that autistic self-advocacy efforts are only for quirky people who aren’t actually like their “severe” kids—whom they want to cure, never mind that people with intellectual and developmental disabilities helped found the disability rights movement.
To further the embarrassment for any newly-formed autism organization, NCSA contains exactly zero autistic board members—even though autistic parents with high-support autistic kids are not hard to find. In an era increasingly focused on representation and inclusion, this blatant exclusion takes a walloping amount of arrogance—and possibly a cynical awareness of society’s patronizing assumption that anyone who advocates for disabled people must be a good person.
Why do these non-autistic parents feel the need to draw up their own organization? As Emily Willingham notes,
Some parents w super deep pockets want to draw lines btw Them & Us. They want their own clubhouse where they do whatever they want&their $$ buys them that. The “national council on severe #autism” is the churlish, petty rich parent’s equivalent of taking their bat and going home.
— EJ Willingham (@ejwillingham) January 14, 2019
And what does NCSA even mean by “severe autism”? Well, they claim:
“Individuals in this category are often nonverbal or have a limited use of language, have intellectual impairment, and in a subset, exhibit challenging behaviors such as aggression, self-injury, and/or property destruction that interferes with safety and well-being.”
But as Sara Luterman writes on Patreon (paywalled)
“Notably, whose well-being isn’t mentioned. So are people with “severe autism” nonspeaking? Do they have intellectual disabilities? Maybe! But it could also be literally anybody, because it’s left so open ended.”
So, to the fallacies. NCSA parents claim that “severe autism” is being overlooked. This isn’t true. Media coverage focuses on “severe” autism a lot, often in tell-all stories that compound stigma against high-support people like my son. A recent example is NPR’s story about the impending FDA ban on electric shocking devices to control autistic behaviors. To my and others’ dismay, NPR Twitter characterized the devices as a last resort for “severe” autistic people who “misbehave,” instead of centering autistic survivors’ and advocates’ perspectives. Contrary to NCSA’s claim, the real problem is not that we’re ignoring high-support autistic people. The problem is that they are too often objectified and dehumanized.
NCSA also claims to “speak for those who can’t speak for themselves.” This is absurd, because everyone communicates; the problem is that not all parents and caregivers have been taught, or are willing to recognize, the ways in which autistic people communicate. And by making such a claim, NCSA is rejecting the reality that no one is too disabled for self-advocacy. This has not escaped the notice of autistic advocates with intellectual and developmental disabilities (IDD), like Ivanova Smith (who, remember, represent “severe autism” by NCSA’s definition). In response to an NCSA board member promoting the new organization, Smith wrote:
This is not good. They trying divide the autistic community. I was non verbal. I didn’t like being institutionalized and treated badly. You don’t speak for IDD people if you want us imprisoned!!!! https://t.co/J5SLjr9Bm1
— ivan (@lauralovesian1) January 15, 2019
I am as angry as Smith is about NCSA’s approach to the issues like institutionalization and housing: we are in a housing availability crisis for IDD people, yet NCSA’s energies are focused on getting Medicaid to pay for segregated housing, instead of the community-based options disabled people themselves want and have fought to make possible.
What NCSA wants, specifically, is to create boutique “small-i institutions” to cocoon their own kids, even though we know from self-advocate histories that even fancy institutions are still soul-sapping, and differ very little in practice from the institutional hellholes parents think they will be avoiding. Also, by trying to tap into Medicaid funds for their boutique homes, NCSA is screwing over people who have the same support needs as NCSA parents’ kids, but do not have wealthy parents trying to game the system.
If they want to do the right thing on housing, NCSA should look to another relatively new parent-led org, Little Lobbyists, whose mission is “Advocating for Kids With Complex Medical Needs and Disabilities,” and who work alongside disability and self advocacy organizations on long term housing and supports. At a recent Disability Integration Act, Little Lobbyists tweeted:
“We recognize that our disabled children will grow up to be disabled adults and as we do every day as their parents and caregivers, we want to make sure that they have the support in place to live their best lives, maximizing their independence in their home and community, and not in institutions far, far away.”
There are many other examples of NCSA’s approach being counter to that of most organizations championing rights for people with IDD. This includes their horrifying callousness in posting a position statement refusing to ban seclusion and restraint one month after 13-year-old autistic California student Max Benson died while restrained. NCSA also endorses putting their adult autistic offspring under legal conservatorship, while opposing the supported decision making options that IDD orgs have been behind for years. (Even the American Bar Association recently endorsed supported decision making.)
Another tactic NCSA uses is publishing harrowing, parent-perspective accounts of autistic kids and adults having meltdowns, self-injury, or aggression. I can guarantee that I’ve never read a single such “real autism expose”—not one—that hadn’t also happened to parents, self-advocates, and professionals I know, and who chose to help their loved one or client instead of focusing on how hard the experience was for them. The difference, besides respecting another human being’s privacy and dignity, is approaching an autistic person in distress from a perspective of “what is wrong” and “how can I help them?” and also from understanding how things non-autistic people don’t think twice about can be really frustrating or intolerable for some autistic people, like transitions, lights, and scents. It is disheartening to see parents being encouraged to take the approach that “this is the fault of autism which is a burden on me and all I can do is support an organization that says they have answers.”
In contrast to the NCSA, autistic self-advocates don’t claim to be able to “fix” anyone or everything. What they do want is to ensure that everyone who needs accommodations for their brains gets those accommodation from day one. Self-advocates want these basic rights with the full understanding that some autistic people will still sometimes be self-injurious, or remain non-speaking, even with the most understanding parents and all of the accommodations possible. And even when things are hard for everyone.
Parenting is never going to be a pony party, no matter how easygoing kids are. But the baseline is that, whether our kids have intensive support needs or not, we parents need to be on our kids’ sides. Plus we know, too well, what happens when the negativity and parent-burden mentality of organizations like NCSA are not countered: we will continue to see filicides of “severe” autistic and disabled people. As disabled advocate Ruti Regan notes,
There are hundreds of disabled people murdered by relatives who should be alive. And all too often, the media treats these murderers as victims rather than perpetrators, and frames murder as an understandable reaction to the difficulty of caring for a disabled child.
— Rabbi Ruti Regan 🏳️🌈♀🇺🇸 (@RutiRegan) January 24, 2019
Can you imagine how much more productive the NCSA parents could be, with their considerable energies, executive function skills, and resources, if they chose to to work against those negative parent narratives instead of promoting them? If they chose to work with self-advocates instead of opposing them? If they would acknowledge disability advocacy history, including the awful things that happen to people with disabilities when non-disabled people dominated disability conversations? If, instead of cherrypicking statistics to misrepresent the autistic people who have always been here as a tsunami epidemic that will overwhelm parents and families and governments, they aligned with disability advocates on policy and research, so that all autistic people, no matter their age or ability, could have a better quality of life?
Until the NCSA and their ilk wise up about what their priorities should be, their kids are the ones who will suffer. The rest of us will look to autistic self-advocates for direction, and fight for change and hope after the model of autistic self-advocate Sam Crane:
“We’re a community that wants hope, and want support. So our first advocacy campaign back when we were entirely volunteer led tiny oganization in 2006, was against an awareness campaign that portrayed autism as the sort of dark force that was holding children for ransom. And that was sending messages like, you know, we have your child and your child will never have friends and is doomed to a life of social isolation and will never live independently. Those are messages that autistic people often do hear about their future, and we found that it really negatively affects us. We are people like everyone else. We want to believe that we have hope in our lives.”
And Leo and I will continue our excursions, always looking for fidgets and fun, as well as more places and people that make us hopeful about his future in our community.
*I’ve seen more than a few people take this statement as “evidence” that my son is not really a high-support person. Besides the obligatory “bite me,” perhaps consider that what I think of as a “pleasant walk” does not in any way resemble the non-autistic version.