Thursday, December 20, 2018

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

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.

Wednesday, December 12, 2018

His Hands Were Quiet: A Review

[image: Brown book cover. Small yellow text at
the top reads, "Zachary Goldman Mysteries 2"
Next, the title in white all caps text reads,
"His Hands Were Quiet." Next is an image of a
yellow triangle with a silhouette of a person bending
backwards and being struck in the chest with a
bolt of electricity. Large yellow text at the 
bottom reads, "PD Workman".]
Maxfield Sparrow
His Hands Were Quiet
By P.D. Workman

Content notes: suicide, abuse, murder, house fires, burn injuries, PTSD, Judge Rotenberg Center, ABA

This book review gets all the Autistic trigger warnings. It is a gripping thriller/suspense novel that could help people understand autism and Autistic people better, and it is raw and honest about what some of the most vulnerable Autistic people endure. It will be a tense read for everyone and could be especially triggering for many Autistic people, so proceed carefully with this review and remember that your self care is more important than anything.

Zachary Goldman is a private investigator with his own past history of trauma. He grew up in the foster care system and had a long and painful recovery from being badly burned in a house fire. He’s not in the greatest life situation when the novel opens—he’s sleeping on someone’s couch and not even doing that very well. Zachary suffers nightmares and insomnia from the stress of his current situation and the long-term effects of trauma.

When the mother of an Autistic boy living in a residential facility contacts him to investigate her son’s death—the institution and the coroner have decided that her son’s death was a suicide but she doesn’t feel that’s the truth—Zachary falls down a rabbit hole of autism therapies, electric shock, and adult Autistic protestors. Will Zachary uncover the truth about the boy’s death? Was it suicide? Murder? And why do the therapies used in the school make Zachary feel so uncomfortable? It looks to him like torture, but surely professionals know what’s right?

I have been a fan of P.D. Workman’s writing for years. She mainly writes YA and adult genre fiction and develops relatable underdog characters who move the story forward with their drive to understand and be understood. Workman’s characters seek and speak truth while others doubt their information and often their basic life competence.

Zachary Goldman is no exception to the theme. In fairness, his life is in shambles when the story opens, but people hover, untrusting. Both his ex and his friend who owns the couch Zachary is crashing on suspect he’s going off the deep end when he becomes obsessed with the school, the therapies, and the autistic children as he watches more and more troubling “therapeutic” situations—including a malfunction of a skin shock device, resulting in an electrical burn on an autistic girl’s skin.

As you may have already guessed by now, the school in the novel is modeled after the infamous Judge Rotenberg Center (JRC). When Zachary begins his investigation, he’s shown reward areas with cartoon characters, bright colors, a ball pit. He’s given the “glossy brochure” tour and might have walked away satisfied if it weren’t for all the protestors outside. The school’s director has Zachary enter and leave through a back door, hoping he would ignore the protestors, but Zachary ends up talking to a woman, an Autistic adult, who is with the protestors.

There are many moments in the novel that shine as not just scenes in a well-crafted story, but sensitive and insightful teaching moments. Zachary’s conversation with the protestor is one of those moments. As a longtime fan of Workman’s writing, I knew she was working on this novel and, along with many other Autistic activists and advocates, helped her connect with as much #ActuallyAutistic #OwnVoices as we could. Her research was tremendous and I felt a depth of understanding of Autistic issues throughout the novel. Some characters are ableist, some are grappling with entrenched ableism, but the bedrock of the novel is clearly respectful and Autistic-allied.
“Even without aversives, therapy can still cause PTSD or other anxiety or emotional problems.” 
Zachary scratched the back of his neck. “Do you have proof of that?” 
“I am proof of that.” 
He looked at her, studying her face and her body language. “You did ABA?” 
“Yes. I did.” 
“What for? You aren’t autistic, are you?” 
“Yes, I am.” 
 “You… must be very high-functioning. I wouldn’t have guessed it…” 
 “Do you think that’s a compliment?” she snapped. 
Zachary fumbled for an answer. He had clearly said the wrong thing. He’d somehow insulted her. And he didn’t know what he’d done or how to undo it. 
“You think I want to be like you?” Margaret persisted, her eyes flaming. 
 “Like me?” Zachary let out one bitter bark of laughter before he caught himself. “No, I don’t think you would want to be like me.”
(From His Hands Were Quiet, location 1088, Kindle version)

Researching for the case, Zachary reads the ABA classic text, The Me Book by O. Ivar Lovaas. At points throughout the story, Zachary reflects on what he had read in The Me Book and how it relates to the aversive therapies he witnesses in the school.
And Lovaas… what had Lovaas said? He had said something along the lines of some children being rewarded by negativity and punishment, so that the parent or therapist had to be very angry and hard on them to get the proper results, and that weeks or months of such intense therapy could be taxing on the parent. Poor parents, having to be so hard on their kids. Zachary shook his head, thinking about the arrogance of such a statement.
(Location 1995)

His Hands Were Quiet serves as an engaging fictionalized introduction to many crucial issues in the Autistics Rights movement. Many people who would be disinterested in reading non-fiction political writing will find themselves drawn into and caring about the human rights issues of the JRC, ABA therapies, the presumption of Autistic competence, and related issues through reading Workman’s mystery/suspense novel. His Hands Were Quiet is part of a series of novels about Zachary Goldman’s cases, but reads well as a stand-alone novel.

If there are people in your life who enjoy detective novels and would want to (or NEED to!) learn more about autism, here’s your Christmas present for them. Workman’s eye-opening story will lead to many fruitful discussions and much increased empathy for the struggles and needs of Autistic people.

Once more, I warn about the general content of the book, which can be intense at times, both in the ways that most mystery/suspense novels are but also for any Autistic who has experienced stressful therapies. With that caveat in mind, I loved this novel and recommend it to anyone who enjoys the genre.