Showing posts with label parenting. Show all posts
Showing posts with label parenting. Show all posts

Forcing Friendships Doesn't Equal Autistic Youth Gaining Social Skills

My son's first friendships were with family.
[Image of a hug between Mu and his adult big sister. His back is to the camera.
His sister is smiling. Posted with the permission of the subjects.
Image by their father, Nuri Cevik.]
Kerima Çevik
theautismwars.blogspot.com

"How do I handle my child seeing the children of every new family who moves into the neighborhood surrounding us included in outdoor play knowing he is being excluded from the group?"

I saw another parent posting this question as one of the most frequent questions autism parents ask as their kids become preteens and teenagers, and I cringed a bit. It is a common concern for all families with autistic youth trying to navigate a world where they are often othered and mistreated. My son and I also see them when we hang out on our deck or the backyard in the summer, or on snow days. Kids his age, teenagers, will for the most part either ignore him, ridicule him, or ask to do his respite care to fulfill their community service requirement at school. They never ask him what he wants.

That last bit is particularly anger-inducing. Asking for my son as if you are doing me the favor of walking the family dog is dehumanizing to my son in a dismissive way that reeks of ableism on steroids. These are not the kinds of interactions that will help him build the self-confidence he will need to navigate this world after his father and I are gone. He needs to understand that random people may be ableist and some people are dangerous. He needs to know that some will offer friendship as a ruse to some other end. He must be given the chance to interact enough to grasp the differences between true friendship and all other types of approaches.

My son is not just Autistic. He is the son of a Black woman. Survival social skill building is a requirement of being Black in America. Like code-switching to gain access to better education and employment opportunities, knowing who hates you and what that looks like can keep you alive. In approaching/considering my son’s interactions with others, my racial and ethnic experiences inform my stance on his human rights.

Parts of my childhood were spent in areas where my siblings and I were the only African American children in predominantly white neighborhoods and schools. We were in North Carolina in 1972, where "This is Klan Country" billboards appeared on highways in several parts of the state. We never lived or went to school with the expectation of friendship. We were taught to survive the environments, which were for the most part hostile to us.

My mother was an educator. Her parenting flaws were legion but she had a tendency to rise like a phoenix in times of adversity. When I came home at age twelve with a bruise on my cheek asking what an n-word was, she pulled out an unabridged dictionary and had me look it up. Then she told me in terms that I could understand what this slur was meant to do and why it was untrue. We discussed how I would handle my bullies. She warned that even those in authority might hold biases and turn away while I was being beaten and how to reduce situations ripe for being dragged off and beaten up at school in the future.

My mother said something to me back then that was life-changing. She said people were not required to like me or befriend me. They were required to respect my right to exist, to move in the same space, and to be treated equally under the law.

That is what I want my son to learn. I want him to know, as an Autistic person, that he can choose to befriend someone or not. An autistic young person has the right to have an active and willing agency in the process of deciding who to befriend, what boundaries should be set on such friendships and who they are just not comfortable with. Before any of that can happen, they must understand not to comply with every demand made to them from everyone. They need to understand they have a right to say no to people. And they need to know what kinds of behaviors are abusive and wrong.

But I don't see this happening with parents. The focus is on finding friends, even finding dates when children become teens and adults, without assessment or understanding of their children’s needs, wants, or ability to protect themselves from harm. This goes hand in hand with the belief that friendship by any means necessary with "normal" teens will "rub off." As long as parents force friendships their autistic kids will someday go to sleep at night and wake up magically typical in the morning. Any sign of intolerance from their autistic offspring for whatever the parent views as ideal social interactions with peers is then a behavioral challenge needing to be imposed not only on the disabled child but on peers in the neighborhood. This escalates to pleas to communities to create normalizing events by inducing pity for the autistic child or young adult to elicit a response from the schools, friends, or neighbors.

I hope I never embarrass my son by blasting a social media demand that someone come and befriend him without his consent. He played with other children on playgrounds until he didn't wish to go to them anymore. The noise of a gaggle of young folk filling a sidewalk and refusing to yield to his wheelchair is not particularly pleasant for him. If the non-disabled peers who are his neighbors don't even have the courtesy to yield when needed unless he glares at them, how can I as a parent demand that those same teens befriend him?

Contrary to assertions that these forced experiences are a necessary part of the social skills process, the aggressive demand of parents that other teens interact or befriend their autistic teen can backfire by being off-putting. Negative responses from teens cliques/groups parents wish their autistic teen was part of are NOT teachable moments. My view is that my son is a human being, not a social science project. He doesn't exist to teach his non-disabled peers tolerance.

Two cautionary tales of autistic teens irrevocably harmed by the mistaken parental idea that somehow they had neighborhood friends are the cases of the autistic teen boy in Ohio who was assaulted by five teen males with bodily fluids during a faked ice bucket challenge, and the case of an autistic teen boy who was systematically tortured during snow days and holidays by two teen girls. In both cases, parents spoke of insisting their teens leave with their abusers, even when they showed reluctance to do so.

The parents spoke of being relieved their offspring had made friends with typical neighborhood peers. They had no idea their children were being victimized by their "friends." The need for the parents to want their children to have friends in order to make parents feel better overrode possible red flags about these relationships they might have spotted immediately otherwise.

In contrast, every person who has genuinely befriended my son has come directly to him, not me, and extended their hand or signed to him or asked him if he would like to sit with them. They made it clear to my son that they wanted his friendship and their intent was transparent. And yes, they knew he was a nonverbal autistic. They only asked how he communicated, respected boundaries, and made an effort to find activities that allowed him to see us and understand he could return to us anytime he wished.

My point is simple. We parents shouldn't push friendships on our autistic children because we think they need to have them to reach a goal of being indistinguishable from their typical peers. We shouldn’t presume their incompetence at acquiring friends or berate them for not having any or enough friends. We should not create or force participation in events requiring typical partners and then send social media lamentation that our kid is autistic and has no friends when things don't go well. What parents do by this behavior is to broadcast across a global platform that they have a vulnerable disabled person who is friendless. They broadcast that they are willing to force their autistic loved one to comply with anyone who presents themselves as a potential friend to them. This destroys our young people’s self-worth, reinforces the belief that they must comply with everyone’s demands, and leaves them with a sense of helplessness and lack of agency in their own lives.

Look at what your autistic offspring like, what they want, and how they navigate the world first. Consider what would work for them. Then sit with them and however they communicate with you, explain consent and boundaries. Only when parents are certain their autistic teens want friendship facilitation and understand boundaries and consent should friendship facilitation happen with the active agency of the autistic teen. Otherwise, this is about us, not them.

P.S. Friendship facilitation does not mean broadcasting your teen's lack of friends online or trying to gaslight other teens into taking them to events like homecoming dances, proms, or birthday parties. It means looking for meetups and events that will be accessible to your autistic teen, asking them if they want to participate, and allowing them to leave if and when they wish.

This could save our children from irreparable trauma.

Peace.

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A version of this article was previously published at The Autism Wars.
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Dangerous Assumptions

proud parents
Photo © Lucy Downey | Flickr / Creative Commons
[image: Two Canada geese swimming with a fluffy baby gosling.]

Julia Bascom
juststimming.wordpress.com

There is this thing that happens sometimes.

Parent has an autistic child. Autistic child doesn’t speak, or their speech isn’t an accurate window into what they are thinking. Autistic child is presumed to be very significantly intellectually disabled.

Years later, a method of communication is found that works for the child, and it turns out that they are in fact very smart. Very smart! The parents are overjoyed. They begin talking about presuming competence, the least dangerous assumption, that not being able to speak is not the same as not having anything to say.

They are so, so excited.

And they start talking about all the incorrect assumptions they had. If we’d known, they say, we wouldn’t have done X. If we had known they could read, think, hear us.

And it’s a big problem, because the way they talk… they think the problem was that they treated their child like they were intellectually disabled, and they weren’t. But that’s not the problem. The problem is that they thought their child was intellectually disabled, and so they didn’t treat them like a person.

These revelations, about presuming competence, human dignity, and the least dangerous assumption—they don’t apply only to kids who are secret geniuses. They apply to everyone. They are the most important for the kids who really do have intellectual disabilities, who really can’t read or use full sentences and who really do need extensive support. The people who came up with these terms came up with them for a population where there is very little doubt that significant disability is a factor. These terms don’t mean assume they aren’t actually disabled. These terms mean assume they are a person, and remember what you don’t know.

When the neurodiversity movement first got its legs, oh so many years ago, we got a LOT of pushback from people who thought we were denying disability. And we had to be clear that we meant everyone. And I worry, more and more, that certain very academic circles have left that behind, in practice as much as in theory. It makes liars out of the rest of us, and it makes a lot of work very, very difficult.

If I told the parents in question that I am thinking about this, they wouldn’t understand. They’re not saying intellectual disability doesn’t exist, they would say. But the truth is, they’re either saying that, or they’re saying thank god, it wasn’t my kid.

And it’s a slap in the face, every time.

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Originally published at juststimming.wordpress.com. Sincere thanks to Julia for allowing us to share it here.
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Parenting Kids With Disabilities: How to Get Through Tough Times

Shannon Des Roches Rosa
www.squidalicious.com

Content note: This article discusses abuse and murder.

Photo © Steve Silberman
[image: a white woman, standing behind a white teen boy
with brown curly short hair. He is looking at the camera.
Her arms are over his shoulder, his arms are up
and tickling under her chin.]
When parents like me talk about our kids with disabilities and intense support needs, we have to be thoughtful. We need to make it quite clear that our kids are much-loved and very awesome human beings. We should never, ever state or imply that any challenges we face as a parent are our children's fault. We need to handle their privacy with delicacy. And we shouldn't accidentally enable disrespect towards children who are already too-frequent magnets for morbid fascination, and pity.

But we do need to talk, because our parenting gig is not like other parenting gigs. It just isn't. We, our kids, and our families need different supports than families whose kids don't have disabilities, and we often need a lot of them. Sometimes we're not always sure where to find those supports, or even aware of available supports; sometimes we're ashamed to pursue the supports we and our kids need. And not having the supports we need for the best quality of life possible can lead to unnecessary hardship for everyone involved.

So, let's talk about what parents like us need, and especially how to get what we need. But first, I need to be forthright on one matter: In no way does lack of services excuse harming our children. Ever.

People with intensive support needs deserve sufficient resources, and so do their families. When these services are minimal or unavailable, that is a large-scale failure on our society's part. However, insufficient resources don't explain or justify murder of disabled children, because such crimes—which are also, frighteningly, not rare—do not actually have lack of services in common. So please don't buy into or spread the dangerous message that if parents don't get enough services, they might kill their autistic or disabled child.

Instead, parents—like me, like you—need to hear that it's not a failure or shameful to ask for help, and we need to feel safe about doing so. For our own sake, of course, and because reaching out also protects our kids.

Being in crisis is not the same as being a failure. Nor is it a personal failure to admit you and your child need help. So we need to work past fear and misinformation, and get educated about what our support options are, both during emergencies, and in general. Misinformation can lead to tragedies, as when parents absorb media-propelled myths that it more understandable for a mother to try to kill her child than to call Child Protective Services (CPS) on herself if she's thinking about harming that child. These dangerous myths sometimes persist because parents don't actually understand the role of CPS in protecting both children and families, nor are they aware of emergency services or rights-based services that were always available to them, if they'd known or been told where to look.

I spoke to Dori Tanaka, Family Resource Specialist Coordinator at Support for Families in San Francisco, who says:
"While contacting CPS is perceived by many families as a negative, it can help families access emergency services. Once CPS is involved, they may be able to assist families with support to get through a crisis. If possible, CPS's goal is the reunification of the family. 
"Unfortunately, it would be better if families did not have to resort to using CPS services; it would be better if services that would help them in caring for their children were easier to access. [But] many parents are often unaware of resources like Support for Families (and its local sister agencies) that help San Francisco families of kids with disabilities navigate IEPs, home health care, childcare access, and insurance scenarios -- services that can help prevent getting to that crisis point in the first place."
But avoiding parenting crises isn't just about services. We also need to be thoughtful and compassionate in how we approach our parenting, because our kids do not exist in a vacuum. They have a relationship with us, they react to us, and if our behavior and parenting choices do not respect our kids' needs and choices, then we parents can actually be the main problem in our kids' lives.
Especially when, as with autistic kids like my son, so many treatments and approaches and interventions are based on "normalizing." If we prioritize compliance and obedience, if we do not allow that autistic people have autistic brains and autistic learning styles, and are ill-served by forcing them to learn in non-autistic ways, that can lead to trouble.

How else can you work on improving your outlook and attitude as a parent? By finding a supportive community. Community matters, when it comes to feeling supported as a parent. It matters a lot. Both online community, and IRL.

You need to be selective, though. You need to connect and talk with people and parents who are good listeners, and avoid those who aren't. Once, when I was feeling particularly overwhelmed, I managed to squeak in a night out with a friend. On the ride home, I confided in her about some of my parenting worries. She responded by telling me about a friend whose children died from degenerative diseases, implying that by comparison I didn't have anything to worry about. I certainly never confided in her again.

Because when when any of us are floundering, depressed, or in crisis, it doesn't matter if other people have things harder. They are not living our lives. We are. So find someone who gets you, who wants to be around you, and/or who wants to listen (and to whom you will return the courtesy, yes?). Then cut the scoffers or other unfriendlies out. Your time and energy are precious, so don't waste them on people who treat you and your heart thoughtlessly.

Unsurprisingly, many of my friends are parents of kids with disabilities, and/or autistic and/or disabled themselves. When we talk, we talk—and talk and talk and talk. We discuss things we would never, ever say in public, out of respect for our kids and also for the reasons listed in this essay's first paragraph.  We coach and advise each other. And we talk about silly things that are totally unrelated to our kids, because all parenting all the time gets old really quickly. It's all cathartic, it's all fair, and it's all necessary. So try to find your people. Either IRL or online is fine, and anyone who tries to tell you that online community isn't real is living in 1994.

A last, much-appreciated resource for me (as I've written many times) is the writings and insights of autistic adults. Parents and professionals are capable of beautiful observations and crucial recommendations, but there is no substitute for having lived an autistic life. Consider also my personal experience: professionals were the ones who lobbied for my son to have early intervention because otherwise he might "never develop" life skills—and left me a panicked, jibbering wreck; autistic people are the ones who soothed my soul by reassuring me that my son's developmental trajectory was his own, and that, like them, he's probably going to be a life-long-learner and developer.

And of course, my son is also good at teaching me what he needs, as long as I'm paying attention. Our relationship is one of affection and synergy rather than one-sided deficit-battling. He is not my precious special angel meant to teach me life lessons, but rather an embodiment of self-advocacy and grace despite the crap that life, silly people, and even well-meaning people constantly throw at him due to his disability. I hope I will always have his back in the way he deserves, and in the way he has mine. Even when things are tough for either of us.

A final reminder about healthy attitudes towards parenting kids with disabilities, from autistic autism parent Ally Grace. I think we all could all use such a reminder. Possibly daily. Possibly hourly.
"My children owe me nothing. I brought them into the world, which was my choice and is my responsibility now. I will unconditionally embrace who they are. Because that's my job. And because that is my ethical obligation to my children, who are fellow and equal human beings. Whatever their neurological makeup."
Please know that I am not saying every parenting crisis of ours is fixable, because that also would be unfair and untrue. But there are tools, there are people, there is information that may prevent crises from happening, and can also help us find our way to the other side when crises do happen. We parents of kids with disabilities both deserve and need to know more, and feel better, about our options.

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Resources

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A version of this essay was formerly published at BlogHer.com
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I'm The Parent of a "Severe" Autistic Teen. I Oppose the National Council on Severe Autism.

Shannon Des Roches Rosa
squidalicious.com

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,
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:
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:

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,
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.
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It’s Time to Prepare the World for Your Child

Atlas, it's time for your bath
Photo: woodleywonderworks | Flickr/Creative Commons
[image: Young white child with short dark brown hair
embracing an enormous globe of the earth.]
Maxfield Sparrow
unstrangemind.com

Ray Hemachandra recently published an essay on his blog that reads like a love letter to/about his adult Autistic son, Nicholas. In the essay, Ray muses about how quickly time slips by, and how suddenly it seems that his son is transitioning from school to adult life and all the possibilities and struggles that includes.

“For an adult child, parents and families soon no longer have school IEP meetings to fight for rights, accessibility, and inclusion. But many of the same questions we wrestled with in the school setting extend into adulthood and society: Will he or she be isolated or included? How do we foster more inclusive communities broadly, but also more specifically take steps to ensure our child feels a part of the world, not an outcast? So many disabled and autistic adults experience isolation and often depression.”

Ray shares many worries about Nicholas’ future, but then turns his thoughts around and says that worry isn’t helpful. He points out that parents must do all they can to help their children, but in the end parents can’t determine how their children’s lives will turn out. Your child’s life is your child’s life, not yours. Worrying too much will eat away at the precious time you have together. Trying to over protect your child will limit them and leave them unprepared for many of life’s opportunities and possibilities.

Most crucially, Ray writes: “We miss something here. Developmental delay means that much life development happens in adult life for autistics, after age 18 or 21—maybe even more so than it does for us the rest of us.” That’s such an important point. As a 51-year-old Autistic, that’s been my experience: we don’t emerge fully developed at age 18; we are growing and changing throughout our life span.

That is the first thing you must do to prepare the world for your child: join the fight to extend services. The sooner you join that fight, the more years you will have to work to help establish what your child needs as they grow.

Beth Arky’s older article about Autistic people aging out of the system describes several possible solutions different parents and organizations are approaching to address the issue of Autists aging out of the system, citing data that suggests 40,000 Autistics per year are turning 21 or 22 (the age at which services stop varies from state to state). Some of the solutions Arky’s article describes are more workable if parents have access to large amounts of money. Other solutions are problematic and Arky specifically reports on the dangers of setting up a segregated community for Autistic adults. It is so important to fight for your child’s future and it is important to start learning right now—no matter how young your child currently is—about the options and issues coming up in your child’s (and your) future.

It’s also really important to pay attention to what services your child is getting right now. An ABA group called The Daily BA made a video that highlights how important it is for you to pay attention. (There are two things I should warn you about concerning the video, in case you decide to go watch it: it’s heavily pro-ABA, and it is a high-risk seizure trigger as the first three seconds of it are flashing at a rate faster than 3 hz. I wanted to warn you before I gave you the link to the video.)

Disclosure: if you’ve ever read anything I’ve written, you probably already know I’m against ABA. You might be wondering why I’m telling you about a pro-ABA video: It’s because the video unconsciously explains why you should not rely on ABA to prepare your child for their future. Quoting the video:
“I think one of the impending crises we’ve got right now is that these kids are getting great services, they’re getting fantastic services and they’re getting a lot of services. The issue I see is we’re getting now these providers that only work with kids and are not transitioning them and we work with adults obviously, all the way up to 80, but when we get those folks they are not prepared for moving from 35 hours to now 2. And they don’t have the functional skills. [...] They might be able to read and they might have all the academic stuff but they don’t have how to ride the bus, they don’t know job skills. So we’re taking that and we suddenly have a lot less hours. That’s quite a dilemma. I think the only way that’s going to get fixed is as the activist parents who helped vote to get their kids these services follow their child through this transition to adulthood and vote to get more funding because that’s the issue right now.”

I think the BCBA I just quoted from that video highlights two important things. One is that ABA is not getting the stellar outcomes that we should expect from a therapy that dominates the market as the “only evidence-based therapy.” Why are we allowing one therapy to lobby so heavily that it’s often the only thing insurance will cover, if it’s dumping non-transitioned adults into a world that’s not prepared for them nor they for it? The BCBA mentions 35 hours a week of therapy. Autists are getting intensive therapy like that for years. Parents: do not settle for therapies or educational systems that only teach academic literacy and don’t do anything to prepare your kids for adult life!

Another important thing the BCBA says in the video is that parent activists are the ones who need to dig in and change the system. He’s completely right! Leaving aside my feelings about ABA specifically, the “autism industry” caters to the “perpetual child” because that’s what a wave of parent activists before you told them to do. A 2011 report in Disability Studies Quarterly looked at the images of autism and found that parents presented autism as the face of a child 90% of the time. The authors looked at the feedback loop among parents, charitable organizations (75% of depictions of autism were child-only narratives), fictional books (90% children), narrative films and television shows (68% children), and news media (four times as much coverage of autistic children as of autistic adults) and pointed out that the closed loop excludes the voices of autistic adults, resulting in “a barrier to the dignity and well-being” of all Autistic people.

More specific to the topic at hand, this feedback loop has informed the autism industry that Autistic children are the only worthy targets for services. So now it’s time for parents, as the only close stakeholders who are getting heard, to step up and say, “hey, my kid is going to be an adult some day. Autistic children become autistic adults.

Parents need to lobby for more funding for adult autistics so that their children will have the services they need in their 20s and beyond.

Parents need to educate everyone: policy-makers, doctors, teachers, and other parents of autistic children. Find opportunities to speak about the problem of low funding and services for adult autistics. Every parent worries, like Ray Hemachandra wrote, about how their child will survive and thrive after they are gone. Working to teach everyone about the importance of continuing services and education for Autistic adults will help you cut through some of the anxiety about what your child will do when you are gone. You can help to build a better world for your child right now.

Parents need to insist that their child’s education begins introducing transition material early. There is so much to learn when it comes to living independently, with or without supports. For example, no one taught me how to manage money. Maybe everybody figured someone else was going to be teaching it to me. Maybe everybody saw how well I could read and assumed I must not need help with anything else. Whatever happened, someone dropped the ball and I ended up out in the world with no idea how to earn, spend, save, or invest money.

Your kids deserve better. Make sure they are learning what they need to learn and not getting dumped out of the system in their early twenties with an education so uneven it leaves them vulnerable and unnecessarily struggling. We autists take longer to develop and we are still learning new things much later in life than non-autistic people. I realize I’ve just set another load on your already overburdened shoulders with this. You’re in a different phase of childhood and might already be feeling overwhelmed by the demands of the present. I get that. Parenting any child is hard work. But future you will thank current you for carving out the time to think about and work toward these goals now. Your child will not be a child forever and this world is still not ready for your child. We’re all out here trying so hard to change that and we welcome you to join in with this important fight because your child’s future depends on you.
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Review of Killer Caregiver (Lifetime Movies)

[image: Promotional graphic for the movie Killer Caregiver, with a black
background, a woman's face with a malicious expression and a red filter,
and bright orange block letters reading, "Killer Caregiver".]

autisticaplanet
through1filter.blogspot.com

Content note: Some plot spoilers, mentions of violence.

Killer Caregiver stands out from the rest of Lifetime Movie Thrillers. First of all, the adults in the movie actually dress and act like believable adults, not petty, spoiled man-boys or woman-girls—though they do live in a McMansion like nearly every Lifetime movie family in the 2000's through the present. This thriller also differs from the Lifetime norm as the main character Mariah's son, Jacob, has autism.

When a male client makes an unwanted aggressive advance on Mariah (Nicole Hayden), she jumps from her van in an attempt to escape. He then becomes pinned to an entrance gate by the rolling-in-neutral car. He dies and Mariah survives, though she broke her arm while trying to free him.

In the next scene Mariah is trying to work one-handed from her home office. Jacob is heard (Jaeden Bettencourt) yelling, "Mommy!" a few times from another part of the house, and unwittingly disrupts him mom's video meeting with her boss.

We then see Jacob, a white boy who looks about nine years old, and who has sandy, longish, blonde hair and hazel eyes. He is clad in doctor's dress up clothes, with a stethoscope around his neck. He enters the room where his mother is working, and hesitates as his mom greets him and lets Jacob examine her broken arm.

Jacob is a stereotypical portrayal of an autistic boy in looks, motor clumsiness, and selective mutism. He is not the stereotypical portrayal of an autistic boy in that he makes prolonged eye contact with those speaking to him and clearly shows both cognitive and functional empathy, as demonstrated when he knocks over a glass of milk, stressing out his mom, who is on the phone. He rocks and cries until Mariah comforts him saying “It’s okay, buddy.”

Mariah decides she needs a caregiver to help her while her arm heals, and hires a woman named Tess, who (spoiler) is really not a caregiver, but the daughter of the man who tried to force himself on Mariah and then got crushed by her van. The shy and sensitive Jacob opens up to Tess, who uses him as a pawn to worm her way into the family. While this plot twist is a common one in the Lifetime revenge plot genre, Jacob’s autism puts a new spin on it.

A disabled handyman, Eugene, who does yard work for the family, suspects that Tess is trouble and tries to alert Mariah, even though Tess tries to stop him by yelling at him. Eugene goes to Mariah, but she is on the phone so Eugene waits for her to end the call. Meanwhile, Tess puts a power cord along with Jacob’s red kite into a mud puddle. Jacob gets a slight shock that could have been an electrocution if Mariah hadn't come running, grabbing her son just in time. Eugene is the one who then wrongfully loses his job for being careless.

I noticed Eugene became unable to speak when Mariah confronted him, asking him questions and accusing him of not watching out for Jacob. This is part of why he is unable to defend himself, and gets fired.

Whether Eugene is autistic isn’t brought up. Mariah only tells Tess that she found Eugene through a charity that pairs disabled adults who are “high functioning” with disabled kids. Eugene is very verbally shy and vulnerable. (I hate the broad use of the term “high functioning,” as I think it diminishes the struggles autistics with average to above average IQ face.)

I think that Jaeden Bettencourt does as good a job (for not being autistic) in portraying a sensitive and bright autistic boy with a love and talent for drawing. And it is one of his drawings that helps Mariah figure out where Tess took Jacob, after she kidnaps him by luring him out of his bedroom using a reflective mirror and the red kite.

Mariah realizes that Jacob is at Tess’s parents' home, arrives, and then discovers the noose Tess’ mom hanged herself with (after finding out that her husband had been killed in the van accident while trying to assault Mariah). Tess means to use the same noose to kill Mariah, but Jacob, who was told to go into another room by Tess, appears, grabs a baseball bat, and strikes Tess on the head, knocking her out. This frees Mariah and the police come, arresting Tess. Jacob gets to be a hero.

The movie ends with Mariah and her husband Greg (upon whom Tess does her own twisted number), renewing their vows in an outdoor ceremony. Eugene and Jacob both are included in the ceremony, Eugene in the Best Man role. I was relieved that Eugene was welcomed back and included.

Killer Caregiver contains no rant bemoaning raising an autistic child, nor does it have references to cure culture organizations as did another Lifetime movie, “Jack of the Red Hearts” (which also had a non-autistic actor playing an autistic child, though one who also does a fantastic job just as Bettencourt does in “Killer Caregiver”).

I would like to call on Lifetime to cast actually autistic actors in their movies. I would also like them to stop glamorizing acts of violence by mentally ill characters, especially when those actors aren't openly mentally ill. Portraying nearly all mentally ill characters as murderous psychopaths further stigmatizes people with mental illnesses.

In my opinion, “Killer Caregiver,” despite the cheesy title and misleading notions that it might be a plot about a caregiver killing an autistic charge, is a movie worth the watch.
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Parents, Do Not Infantilise Your Teenage and Adult Disabled Children

Finn Gardiner
expectedly.org

Photo © G_Jewels | Flickr / Creative Commons
[Image: Black infant in a wooden high chair,
being spoon-fed by an off-camera adult.]
If you’re a parent of a teenage or adult child with a disability, it’s important to avoid infantilising them.

What is infantilisation? It’s treating people who are no longer children like children in a way that restricts their ability to be fully integrated with their age-peers. It’s talking to them in a condescending voice, dismissing their ideas and opinions, acting as though you will always understand them better than they understand themselves, or going out of your way to shield them from everything you think may be even slightly dangerous.

Infantalisation is treating your child as though they will always be a child, whether they’re five, fifteen or thirty-five.

Infantilisation is different from recognising that disabled people have support needs. That’s part of what being disabled means: being at a relative disadvantage compared to non-disabled people because we require specific supports to help us live within the community, whether that disadvantage is related to physical health, cognition, mental health, sensory processing or perception, mobility, or something else people find disabling.

It doesn’t matter what kind of disability your child has, whether chronic illnesses and intellectual, mobility, psychiatric, learning, developmental and sensory disabilities, or a combination. People with all kinds of disabilities deserve to be taken seriously and treated with respect.

A teenager or an adult with an intellectual or developmental disability is still a teenager or an adult. Accommodating the support needs of an autistic 17-year-old or a 30-year-old with Down syndrome does not mean that you should treat them as though they’re younger than their actual age. You can support people without condescending to them.

Disabled teenagers and adults are just that: teens and adults. Teens and adults may be interested in relationships, sex, college/university, dating, alcohol, parties, mature subject matter in films, TV or books, and other activities and experiences that other people their age are interested in. Pretending that disabled teens and adults don’t have these interests does them a disservice.

If you don’t recognise your teen or adult child's autonomy, they may seek out predatory people who pretend to respect them, but who may lead them into danger because you didn’t talk to them about sex or drugs or relationships or realise that they, like other people their age, may want to try things out.

I’ve seen other disability activists, like Cal Montgomery, talk about allowing disabled people the right to experience ‘dignity of risk,’ or allowing them to try new things and potentially fail at them or learn from their mistakes. I think that’s important. Young people of all ages should have the opportunity to learn what works and what doesn’t work for them.

I understand the desire to protect one’s children from harm. If I had children I would want to avoid them from being harmed, too. Unfortunately, you can’t always control what happens to people throughout the lifespan, as much as you may try. The inherent uncertainty of life requires that parents allow their children to adapt and respond to that uncertainty. There is no such thing as a permanent cocoon, and you’ll find that your teenage or adult child is probably more resilient than you may expect. We deserve the right to try.

Infantilisation is very familiar issue to me. I myself have a developmental disability and my parents—my father in particular—infantilised me as a teenager and as a young adult. I wasn’t allowed to do what many of my peers were allowed to do; my parents claimed that I ‘wasn’t ready’ for many of the things everyone else my age seemed to be allowed to do, like going to school dances. My parents restricted what I read, thinking that I wasn’t mature enough to handle heavier themes in books, TV and films despite encountering similar subject matter in my assigned readings at school. They would force me to attend church even when I’d told them clearly that I was no longer religious; they justified this by claiming ‘in our house, we serve the Lord,’ even though I was only going through the motions of practising Christianity.

I was also a legal adult when this happened; I didn’t tell my parents explicitly that I was no longer Christian until I was eighteen. The appearance was what mattered, even if it was clear my beliefs had changed. When I was nineteen years old, my parents installed parental controls on my Windows account. (I found a way to disable them a few days after they installed these controls without their noticing, but that doesn’t excuse the fact that they still treated me like a small child even though I was an adult.) I was old enough to vote. In fact, I had voted when I was eighteen; I distinctly remember being eager to vote against George W. Bush in 2004.

My parents didn’t always give me the right to try, or if they did, they would do it begrudgingly and blame me if whatever I tried didn’t work out, instead of listening to me and working with me to identify strategies that did work for me. For them, supporting me meant controlling me.

I should also add that recognising that your teenage or adult child with a disability is, in fact, a teenager or an adult is different from using their age as a weapon against them. You can respect their autonomy and recognise that they may need support in certain areas. Just because somebody struggles with housework and certain kinds of planning, as I do, doesn’t mean that you can tell me ‘why, you’re 32! If you want to be treated like an adult, you should be able to muster up those non-existent executive functioning skills!’

Yes, I’m an adult. That doesn’t mean that I don’t have support needs. Rather, it means I should be able to share what my support needs are, and direct the means by which I receive support. Autonomy in adolescence or adulthood is about being able to make decisions about one’s own life and enlisting support to make those decisions and implement them. It is not about having to do every single thing by yourself if your disability prevents you from doing so.

Again, teenagers and adults with disabilities are still teenagers and adults. We have the right to make decisions about our lives and receive support to help us make and carry out those decisions. Having a disability doesn’t mean we’re children, or that we don’t have the right to learn by trial and error. We should be allowed to learn and grow from our experiences.

Your children are not an extension of you; they’re autonomous human beings who will eventually develop their own goals and priorities in their lives that may or may not coincide with yours. Your job is to help guide and support them, not to use them as proxies for your own desires. Respecting disabled people’s autonomy helps us live healthier, more fulfilled lives.
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Against The Autism Parent Feedback Loop of Woe

Kerima Cevik
http://theautismwars.blogspot.com
"Please try to remember that what they believe, as well as what they do and cause you to endure does not testify to your inferiority but to their inhumanity."
-James Baldwin
The Fire Next Time
Photo © Kerima Cevik, posted with subject's permission
[Image: The author's biracial nonverbal autistic son, 
at about age five, expressing shock through the 
gestural language he created.]
San Francisco Autism Society Board Member Stephen Prutsman recently posted an opinion piece* to his organization's blog, and while browsing newsfeeds on social media, I read it. The blog post disturbed me so much I posted a brief response in the comment section (which they did not publish).

Mr. Prutsman headed his article with two images, a rainbow infinity symbol image he meant to represent the neurodiversity movement, and a disturbing photograph previously posted by his ASA chapter president (now removed), alleging to show property damage to the upholstered seats of her car done by her autistic son.

Despite the reality that all content not spontaneously live streamed online is curated content, no one questioned the veracity of the statement that property damage to this car was inflicted by an autistic teen. That was something that bothered me. I wasn't there when the alleged incident took place. I am a stranger viewing this content and reading the hashtag of autism awareness beneath it. How do I know how the seats of this vehicle were damaged? I am presuming the honesty of a parent who shamelessly posts her own son's worst moments for the shock value. People can only ascertain character from words and deeds not from organization position and status. Status and power are not equal to ethics so, despite my presumption that the chapter president wouldn't post a claim that is untrue, it should still be pointed out that broadcasting anything to a public audience needs fact-checking. That means accusations about the behavior of another human being that cannot be verified should be viewed with skepticism when the accused individual is disabled such that they cannot defend themselves.

Prutsman's article also included a disturbing comparison that clumsily used African Americans and Sickle Cell Disorder. That was, in fact, a type of clueless racial microaggression. But the nature of Prutsman's blog post disturbed me so much I decided to address the inappropriate use of race and race-related illness as an extension of the use of Black suffering by affluent white people to gain an edge in debates having nothing to do with issues of race or African American people like myself elsewhere.

I am guessing his goal was to lay out his thesis while defending his chapter president's right to display negative content about her disabled son on the "raising awareness" excuse of what they both define as the "real" or "true" manifestation of autism.

It got me thinking about this large problem I once thought our community would work at solving. The problem is an autism parent emotional sink that is Internet-hosted, blog and social media-fed, and toxic.
Photo © Kerima Cevik, posted with subject's permission
[image: The author’s son, an Afro-Latino presenting male,
with brown curly hair wearing a black turtleneck sweater,
holding an iPad equipped with TouchChat AAC.
Green trees can be seen in the background.]
It isn't because nonverbal autistics like my son are "acute" as Mr. Prutsman infers in his essay. It is my hypothesis that such an emotional sink happens when parents like Mr. Prutsman and his ASA chapter president begin losing the emotional and physical wherewithal to support their disabled family member's needs without help. Under these circumstances, when negative events happen, these parents retaliate by venting their clinical depression, sleep deprivation, frustration, and distress on the autistic offspring by posting their worst moments on social media.

When I named my blog The Autism Wars I meant the wars for accommodation, inclusion, and representation for my son and his neurological peers. The wars for the presumption of his competence. From what I understood of his essay, Mr. Prutsman believes the autism community can be divided into two warring camps and his camp, camp B, is at war with the neurodiversity camp, camp A.

I am not at war with Mr. Prutsman, his oversharing chapter president or the SFASA. If I am at war with anything, it is the culture where ableist attitudes like theirs are incubated.

Is this group of parents within SFASA, led by its executives like Mr. Prutsman and its chapter president, caught up in what I call the autism parent feedback loop of woe? If so, as this pain/frustration feedback loop escalates unencumbered, is there a genuine risk of catastrophic outcomes?

I have had these concerns since encountering parental rhetoric similar to parts of Mr. Prutsman's essay in blogs by others whose written displays of frustration and despair escalated to a deadly conclusion. That is why seeing such a post from an executive of an autism advocacy chapter so disturbed me. He and his chapter president are part of the leadership of an advocacy organization supposedly existing to champion autistics like my son. What message is this sending to the disabled members of this chapter? I wonder if they realize how many autistic adults parent autistic children? How many such parents will happen upon Prutsman's blog through social media browsing?

Let me take a minute to define how I think this feedback loop works:

  1. Digital Exhibitionism: Autism parent group leaders who constantly overshare about their challenges with their kids, who make every disability-related challenge experienced by their offspring about them rather than the child, are using this as a coping mechanism for their own frustration and individual distress. They are typically overwhelmed (frustrated, sleep deprived, clinically depressed, etc) and as a result, may be making decisions with compromised executive function.
  2. The Positive Feedback Loop of Pain, Grief, Frustration: These de facto peer-moderated support groups for overwhelmed parents, if left unregulated, include lots of positive attention for expressing distress and pain. The more the lead parent posts, the louder that parent complains, the more attention they get.
  3. If left unchecked, getting attention for being in pain becomes its own reward. The more that state of mind is rewarded, the more motivation there is to constantly express pain through digital exhibitionism and the publishing of more dramatic negative content.
  4. This feedback loop does damage to a person's motivation to seek actual long-term help for the targeted disabled child or themselves because it's easier, more accessible, and more rewarding short-term when people need immediate comfort after a distressing situation at the expense of one's autistic child. This is especially the case when the autistic target is nonverbal and multiply-disabled.
  5. Any attempt to express concern for the disabled target of the negative content to a group in this state of mind will only strengthen its resolve because it encourages the group to make the problem about those they perceive as their attackers. It discourages introspection and allows further wallowing in frustrated angry pain. It promotes in-group solidarity because now there's a common enemy who they believe is persecuting them.
  6. Without urgent, long-term, quality trauma-informed care for the parents triggering this cycle by generating and posting the curated, negative content such groups need to validate their anger/pain/frustration, people who are caught in this feedback loop risk eventually escalating to violence towards the targeted disabled family members and themselves. The fact that people who have done this are excused for their behavior and the violence is made to seem inevitable (and the fault of the target) further compounds the issue.

The case of Isabelle Stapleton, the autistic young woman who was the target of her mother Kelli's escalating digital exhibitionism and eventually became the victim of her mother's attempt to murder her, is an example of how constant inappropriate validation for posting such negative content online can escalate and become dangerous to the disabled target.

Kelli Stapleton's constant postings of videos and images violating Isabelle's HIPAA rights, and her blog about parenting Isabelle—deliberately named The Status Woe—acquired a large, cult-like following of parents. The resulting frustration and defiance at anyone expressing concern when Kelli and other parents posted negative content about their children is similar in tone and approach to parts of Mr. Prutsman's written content.

I believe groups and individuals with large public platforms who promote this culture of validating negative content targeting autistic offspring create an attitudinal shift that enables escalating risks of potential harm to the autistic youth targeted by such digital assaults.

The plight of artificial intelligence exposed to negative or offensive social media content gives us a painful clue of what impact negative social media curating and consumption can have on people. Norman, the MIT AI that was fed with Reddit data and which now only thinks of murder and death, and Tay, Microsoft's chatbot that was taught by Twitter trolls to be racist and misogynist, show us that the culture of frustration, perpetual mourning, infantilization, hostile objectification of autistics with high support needs, and resentment that drives oversharing and defense of negative content in these autism parent groups may pervert the minds of exhausted, distressed parents.

Our community has an abnormally high rate of filicide-suicides. I believe this phenomenon needs to be studied in the context of the influence of online groups caught in these feedback loops.

Here is my other concern with Prutsman's article.

Mr. Prutsman's thesis in his essay was meant to explain his answering 'yes' to the question “Is it Time to Give Up on a Single Diagnostic Label for Autism?” citing the title of a questionable commentary by Dr. Simon Baron-Cohen in Scientific American.

Prutsman's essay argues for a new label as a kind of weaponized tool for him to wield as an autism dad. His demand for a new label for "acute" autism is not because the group diagnostic designation fails to encompass the entire autistic population, but because he views the label autism as being "tainted" by any group that disagrees with or disputes their parental group's rigid, negative, definition of autism. Prutsman defines severity and indeed autism itself by how he and parents like his chapter president view any negative behaviors, rather than by proper diagnostic standards.

He appears to blame the neurodiversity movement for what he calls 'tainting' of the autism label. Prutsman writes that this tainting happened by presenting autism as an identity, and overemphasis on positive attributes of being autistic by the neurodiversity movement.

What is interesting about how he defines the neurodiversity philosophy is that it is not at all accurate. Unfortunately, the term 'neurodiversity' has been conflated, and the popularity of the book NeuroTribes has led to some parents being confused rather than comprehending.

It is clear now that a great many autism parents don't understand what neurodiversity is. Let me repeat one of the best quotes I have ever read about neurodiversity :
"Neurodiversity isn't about pretending that autism, other developmental disabilities and psychiatric disabilities are all sunshine and rainbows. It's about believing that we should be able to live our lives on our own terms and that our community should continue to exist, and doing whatever we can to make sure that happens."
-Shain M. Neumeier, Esq.
Mr. Prutsman othered anyone who might object to the targeting of autistic youth by the digital display his chapter president employed. He lumped them together into a stereotyped 'other' by listing commentary from those he did not know—and dismissing it. Under the category of non-relevant commentators, he cited the neurodiversity movement or "group A," non-participating chapter members, and online readers like me who were not local. This allowed him to define a collective enemy for his group to view as antagonists.

Prutsman implies that the enemy has won the autism label battle. Now his group must have a new autism label for their kids, one that restores complete power and control of the autism conversation and public policy dictatorship to them.

The sad reality of things is that parents like Mr. Prutsman and SFASA's chapter president, who are affluent, white, and embedded in the feedback loop of woe, are still the loudest and most heard voices in our community. Yet that massive platform is drowning out the voices of the autistics they are supposedly speaking for doesn't seem to be enough.

Their resentment of everyone else, particularly autistic adults having agency in the future of what happens in their own lives, harms my son by perpetuating a deep-seeded ableism that negatively influences the public view of nonverbal, high-support-need autistic youth.

Autism parent feedback loops of pain and frustration don't provide any solutions to the behavioral challenges parents like Mr. Prutsman want constantly highlighted by generating and promoting negative curated content.

The emotional opinion that professional diagnostic labels should be changed to disenfranchise one part of the community, and allow control of autism public policy to rest completely in the hands of enclaves of parents too wrapped up in their own feedback loops of misery to see the need to protect their own disabled offspring by not oversharing negative content, is a risky proposition on his part.

Prutsman is not really asking for a new autism diagnostic label. He's asking for a legal or medical excuse to excise a massive part of the autism community, so parents can run the autism world. Without the consent or voices of their own autistic loved ones, or parents like me.

(And here is a sidenote. Yes, nonverbal humans can indicate consent—if they are allowed to. Once competence is presumed, and communication pathways actively sought for nonspeaking people, yes and no gestures, switches, even eye blinks are possible.)

I don't need a new DSM label for my autistic son. Nor do I need a parent who is oblivious to what our son needs demanding one in the name of all high support needs parents and their offspring. What I need is for parents like Mr. Prutsman to grasp that every stakeholder in our community has a right to equal representation, whether he agrees with it or not. He can't live in a world segregated by those he accepts and those he doesn't. I'm Black. I don't need to remind us that my racial peers are still suffering from that idea.

Abusing one's large platform to enable digital oversharing and abusive content generation is contrary to the principles of an autism advocacy chapter executive. But what can be done to reach such parents? I am afraid the nature of Internet interaction makes such an effort futile.

The question for us is: What can be done to help break the toxic online culture that builds these enclaves of parents trapped in the autism parent feedback loop of woe? How can advocacy groups reach parents who are in this state? What happens when the loop exists within an advocacy organization's power base?

Because something has to change here. This type of dysfunction is the root of community altercations, and I suspect the root of eventual harm to autistic children and youth. We must seek solutions.

This is unsustainable.

--------

*Prutsman changed the analogy on the SFASA site to Scandinavian rather than African-American. Our link is to an archived version of the original post.
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How to Use Visual Schedules to Prevent Accidental Gaslighting

theuninspirational
theuninspirational.wordpress.com

(Content note: This post mentions ABA briefly, and gives a detailed example of an autistic child being exposed to gaslighting.)

I’m an autistic parent to an autistic child. After I tweeted a bit about my take on autistic parenting, that made me think that I want to explain one of the benefits of using visual supports for clarifying life and create predictability.

Visual supports like picture schedules can be used in a number of ways. Sometimes people use them in ABA settings to visualize what reward the child will receive, and I want to be clear that I don’t do that. I don’t do any kind of ABA or therapy that attempts to make my kid appear allistic (non-autistic).

In my home, we use pictures and visual support to make life easier for us, as the autistic people we are. Nowadays, both my kid and I are mostly verbal but visual support is still a great way to communicate for us, for a number of reasons. One of the benefits of pictures, words written down, and color-coding is that this is the kind of information that lingers, meaning even for people like us who don’t always remember what we were thinking about a second ago (hey ADHD), the information is more accessible. Another benefit is that clear, visualized planning can prevent (unintentional) gaslighting and misunderstandings.

Now, some of you may think that since gaslighting is a horrible thing, it’s not something that happens accidentally. I wish that were true, because yes, making someone doubt themselves and their experience of reality is a truly horrible thing to do. In my experience though, adults sometimes do gaslight kids without even realizing it. Especially autistic kids. Especially if parents operate with an allistic perspective. It can go something like this:

An autistic child is being told by a parent that “tomorrow, we’re going to the beach if the weather is good.” If the weather is bad they will stay at home and play computer games. In the mind of the parent, this plan means that they will go to the beach if it’s warm and sunny.

This condition doesn’t have to be a problem, but let’s say that the parent doesn’t tell the kid about what they mean by “good weather.” Let’s say that the kid doesn’t even like sunshine because the heat is sensory hell, but loves playing on the beach on a cloudy day. The next day when they wake up, it’s cloudy and not that warm. The kid is happy, because the weather is perfect for the beach. The parent however, doesn’t want to go to the beach because it isn’t warm enough. Maybe they will disagree and fight about it. Maybe, the parent will say something like “But I told you we’re only going if the weather is nice! Why don’t you ever listen?”

A lot of people will probably agree with me that this is a misunderstanding. However, if you’re an autistic kid your sensory experiences, your interpretations of the world, and what people say are likely to always be questioned, erased, and invalidated—and then you are being blamed for it. It probably doesn’t happen only once a year, it might happen every day. Because that’s life for a lot of autistic people in an allistic-run world.

For kids, this is even worse than for adults because kids’ interpretations are often considered invalid just for coming from a kid. Having your interpretations of the world constantly invalidated day after day, year after year, is a kind of gaslighting. It might not be intentional but it’s more harmful than just misunderstandings between equals.

So how can visual supports help autistic people in these situations?

[image: Black and white pictures of a sun followed by an arrow pointing at
a symbol for beach and a picture of clouds followed by an arrow pointing at
the symbol of computer games. Images from Sclera symbols.]
Let’s say that the parent and kid in our example had made a picture schedule about this. For some people, it becomes much easier to understand an autistic way of thinking when you communicate using pictures, meaning that just putting what you want to say in pictures might close a communication gap between the parent and the kid.

But even if closing that gap doesn’t happen automatically, when the parent and kid created the schedule together, the question of what “good weather” is would hopefully had come up. Many of the parents I discuss visual supports with mention this idea, that putting your thoughts into pictures makes it more necessary to be precise and see possible interpretations beyond your own. When visualizing plans together, it can become easier to understand each other.

Hopefully, by making visualizations and realizing that you have different sensory experiences about sun and heat and therefore interpret “good weather” differently, you avoid misunderstandings and gaslighting.

[image: Black and white pictures of a sun followed by an arrow pointing
 at a symbol for computer games and clouds followed by an arrow pointing
at the symbol beach. Images from Sclera symbols.]
Now, would it be enough to visualize during what weather a visit to the beach could happen? No. If a kid experiences sensory hell from sunshine and heat, the issue won’t be solved just because there’s predictability from a picture schedule. Obviously the parent has to change their idea of what kind of weather that is beach appropriate to not put their kid in sensory hell.

Creating predictability by using visual support isn’t some kind of magic, it’s only one part of parenting an autistic kid in a respectful way.
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