Ray Hemachandra recently published an essay on his blog that reads like a love letter to/about his adult Autistic son with developmental delay, 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.