Is the Most Common Therapy for Autism Cruel? [Repost]

Trigger warning: ABA, aversives.
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When parents learn that their child is autistic, they are naturally interested in interventions to help their child that have a proven track record. At least in the United States, Applied Behavior Analysis (ABA) is often the first-line therapy recommended, and some insurance plans exclusively cover ABA. On this week’s post, I am sharing an article that summarizes the complex history and controversy around ABA.

At its core, ABA seeks to encourage behaviors deemed as “desirable” by society, while discouraging other behaviors deemed as “undesirable.” It works by changing reward structures. For many autistic people, “desirable” behaviors like making eye contact and speaking may be innately challenging or uncomfortable. An ABA program will create artificial rewards for these behaviors so that the child becomes motivated to engage in them. The darker flip side of some ABA programs involves punishments, or “aversives” to deter behaviors deemed as “undesirable” even when such behaviors may serve an innate functional purpose for the child.

As I read the article below, it made me think about how the definition of “evidence-based practice” may be more complex than it seems. A practice may lead to objectively demonstrable changes in an outcome, but are those outcomes truly positive for the participants? ABA does have an evidence base in terms of being linked to behavior changes deemed positive by neurotypical educators. But, these changes could come at a cost to the participants’ identities, and particularly aversive forms of ABA can cause lasting harm which could outweigh any benefits. As with most things, the best solution may be a hybrid approach that integrates components of ABA while still respecting the child’s neurology-“a focus on teaching skills, rather than normalization or suppressing autism-related behaviors.”
Is Applied Behavior Analysis, the Most Common Therapy for Autism, Cruel?

On Being a Disabled Introvert and the Follies of Social Skills Training

In my earliest childhood memory, I am standing in a room that is not in my home. I remember hearing the words “San Diego,” one of my parents handing me a piece of banana and then walking away. I was likely younger than 2 at this point. I remember the words “San Diego,” the taste of the banana, but most of all, what I remember was the sense of peace I felt standing alone for just a moment, with nobody talking to me, touching me, or trying to engage my attention. My parent was near, but I was alone in my little space, and it felt glorious.

Several of my favorite other early-childhood memories involve the joy and peace I felt spending hours in my bedroom listening to music, lying quietly with my thoughts, and when I got old enough, reading. I am told that in my toddlerhood, when I heard the doorbell ring or discovered that someone was visiting our home, I would head off to the quiet of my bedroom. This behavior deeply concerned my teachers at the local blindness agency where I received early intervention services. They were worried about my socioemotional development. But in relaying this story, my dad-a smart, funny, loving man who just happens to be an introvert-told me he understood

When nondisabled children prefer quiet activities or have quirky interests, they might be considered a little odd or unusual, and adults might make a few attempts to encourage them to be more social, but usually it’s accepted that this is part of who they are. In contrast, when disabled children display any kind of social behavior that deviates from the developmental charts, alarm bells sound, and often an entire team of adults swoops in to try to save these children from social isolation. As my fellow blind blogger, Meagan Howell, writes (full post is linked at the end):

…my introversion seemed to be a source of ongoing anxiety for the adults in my life. Daycare workers, teachers, consultants, and all manner of others concerned themselves with my social development, no doubt worried that a disabled child left to her own devices would morph into a stunted mess. Their fears weren’t entirely unfounded, and my isolation did facilitate certain quirks it took me a bit too long to eliminate, but my intelligence, contentment, and overall growth didn’t feel impeded by my apparently-tragic lack of friends. At least, that’s how I tend to view it. Frequently labeled antisocial and stubborn, I noticed that my personal preferences were considered partially or wholly irrelevant. This is true for many children, I think, especially when they grow up surrounded by people who fear they’ll turn out wrong, somehow. I don’t know that any adult stopped to consider that maybe, just maybe, Meagan was at peace with not having many friends, and that she’d make them when she was ready.

Most disabilities are perceived as social liabilities, and this perception has a kernel of truth-disabled people of all ages are more likely to encounter abuse, bullying, and exclusion than their nondisabled peers. In addition, certain disabilities can change the ways in which children develop social skills. For example, children with sensory disabilities may not be able to directly observe all aspects of other people’s social behavior. And, one common feature of autism (according to autistic self-advocates) is “difficulties in understanding or expressing typical social interaction.”

While it is true that disabilities can alter the process of social development, prevailing beliefs about how to intervene are often based on problematic assumptions. Social “deficits” are often expected in disabled children, and the popular solution for these “deficits” involves top-down instruction from nondisabled educators. “Social skills training” is considered a part of the “Expanded Core Curriculum” in instruction of blind children, and is popularized in the education of autistic children as well. All too often, well-intentioned social skills programs for disabled children continue to perpetuate long-lived power imbalances and societal prejudices. For example, when rooted in a culture that values extroversion, social skills programs may ignore and devalue the needs of introverts like myself and Meagan. More insidious, “social skills training” is often code for “compliance training,” where the hidden curriculum involves teaching a disabled child to comply with nondisabled norms in order to be accepted. Rather than instilling competence, confidence and well-being, inherently compliance-based instructional approaches can instead instill shame, insecurity, or self-loathing, as children may feel compelled to censor a part of themselves in order to be accepted by others.

So then, is there a better way?

In parent support groups, parents of disabled children sometimes voice concerns about their kids preferring to interact only with adults, or to play by themselves for hours with a single object, instead of interacting with their peers. I tell these parents that traditional children’s play activities are often rife with accessibility barriers. Solitary activities, that a child invents and directs, are fully accessible by design. I remind parents that adult interaction partners tend to be more predictable and more accommodating of access needs than other young children. Thus, a disabled child’s “socially inappropriate” behaviors may be highly adaptive. Furthermore, for autistic people (of all ages), “special interests” may serve as a primal source of joy. It is fascinating that the same deep, passionate focus derided in the autism intervention world as “perseverative” or “obsessive” is rewarded in the academic world with grants and tenure. As Julia Bascom, executive director of the Autistic Self-Advocacy Network, writes (full post is linked at the end):

This is about the obsessive joy of autism. So I guess, if I’m trying to explain what an obsession (and, by necessity, obsessive joy) means to me as an autistic person, I can bring it back to the tired old image of a little professor cornering an unsuspecting passerby and lecturing them for half an hour. All too often this encounter is viewed through the terrified eyes of the unwillingly captive audience. I’d like to invite you to see through the eyes of the lecturer, who is not so much determined to force their knowledge into you as they are opened to a flood of joy which they cannot contain.

There are several things we can do to support disabled children’s social development. We can begin by understanding that social connection means something different to every individual, and instead of following a one-size-fits-all curriculum, we can try to understand and support a particular child’s social goals, knowing that these might change throughout the child’s life. We can follow the child’s lead in identifying playgroups and other natural friend-making opportunities based around their interests. We can work to ensure that play settings are fully accessible and that there is a choice of activities. We can introduce disabled children to a variety of role models, both disabled and not, who can demonstrate the social skills that really matter for healthy relationships: things like sharing, empathy, and trust. We can provide guidance beforehand, and feedback after, a challenging social situation. We can support the child’s natural social learning process so they can develop the connections that matter most to them, while accepting them for who they are.

As for me, my interest in relationships (both platonic and romantic) kicked up a few notches when I hit puberty. Today I am happily married, have a small group of great friends, have good relationships with my family, and feel comfortable teaching and leading others. What I learned about socialization didn’t come from blindness professionals or from a book. I did what the blindness professionals said I couldn’t do: I learned by observation. As a quiet person, I learned by listening to others interact, and adopting the social behaviors that fit me and my personality. At my core, I’m still an introvert, and I’m OK with that.

Related Reading:
“Go Play with your Friends!”
The Obsessive Joy of Autism
The Tyranny of Indistinguishability

Respectfully Connected: The Lady on the Plane [Repost]

“I’m hopeful that maybe that woman slept a little bit more soundly, more restfully than she has in many years. Because she now knows that her grandson is exactly who he is supposed to be, and that it isn’t anyone’s fault, but just life as it is meant to be.”

I fly alone at least twice each year. Sometimes I focus on my music or my laptop during those flights. Other times, I strike up conversations with seatmates. Usually these conversations are brief and inconsequential. But as this post reveals, sometimes a chance conversation with a stranger on a plane can change that person’s life.

Even in todays “information age,” misinformation about disabilities abounds. In fact, the ready availability of answers with a single Google search allows misinformation to spread without its credibility being questioned. Much of the misinformation about disabilities surrounds their causes, fueling the centuries-old notion that family members are to be blamed for a child’s disability. Sometimes, the best people to correct such myths are those of us who live with disabilities and see them as a natural part of the human condition.

The author of this week’s post, Morénick, is an autistic woman in a multicultural, neurodiverse, serodifferent family of color. She describes a chance conversation on a plane, where she assured her seatmate that immunizations didn’t cause her grandson’s autism, but more than that, that her grandson is OK as he is. By briefly presenting correct information and the wisdom of lived experience, she interrupted a cycle of guilt and fear that was based on misinformation.

Sometimes I feel discouraged when I look at the depth of ableism around us, and wonder what I, just one person, can do. Perhaps the answer is in those chance meetings that pop up when we are just out living our lives. We never know how much a stranger might need our wisdom.

The Lady on the Plane

About Autism: From the Autistic Self-Advocacy Network

On last week’s blog, I mentioned an offensive “awareness” video about autism, which portrayed “autism” as a creepy voice threatening to break up families, take all their money, and destroy their children. While that video may be exceptional, information about disabilities on the Internet is often depressing, sometimes inaccurate, and rarely vetted by disabled people. Autism, in particular, has been subjected to many misunderstandings as part of its quick ascent into the public eye.

So, I was glad to find this fact sheet describing the features of autism, published by the Autistic Self-Advocacy Network(ASAN). ASAN is run by and for autistic people, and aims to “empower autistic people across the world to take control of our own lives and the future of our common community.”ASAN treats autism as a “neurological variation” and describes common features using unbiased language, emphasizing that no two autistic people are identical. Consult this fact sheet if you want to learn about autism or educate others, and while you’re there, check out ASAN’s public policy work, much of it directed at issues affecting people across the disability spectrum.
About Autism