Saturday, June 5, 2021

The ABA autism industry needs to be abolished, but the discussions about it need to be intersectional

I don't need to reiterate here how the ABA autism industry has a primary aim of getting autistic folks to act neurotypical, relies on manipulation and coercion, and is harmful to autistic folks. If this is unfamiliar to you, please do a quick google search and listen to the many autistic voices who tell us this, rather than relying on a neurotypical clinician's take on it.

With that aside, I do want to discuss how most of the discussions I see about "never ABA" by clinicians, autistic folks, and autistic clinicians are almost entirely taking place among white, middle-class-passing, non-disabled-passing folks. These are people who have the privilege to decline a service recommended by medical teams with little risk that their children will be taken from them. These are people who largely are not relying on subsidized housing or subsidized child care that they can easily lose if their child cannot follow certain expectations or is seen to be "not participating in services." I should clarify that I know plenty of Black and brown visibly disabled autistic and otherwise neurodivergent folks who speak out about the ABA industry and the harms it does, but I have not witnessed these folks promoting the idea that all families are free to decline services recommended to them. 

There is currently a huge systemic problem in the US in that private and public insurance providers will cover hours upon hours of ABA for minors with an autism diagnosis, while often covering very little else. This is the problem that needs to be addressed.

But while this is still the case, we have situations such as these (all of these are types of situations I have witnessed in my work or from friends and family, with details changed and some composites formed in order to not be personally identifiable):

Tamara is a Black autistic two-year-old who attends a subsidized child care program while her single mother Angie works. Tamara sometimes becomes overwhelmed during transition times and runs out of the classroom. The teachers cannot legally leave the classroom with her and remain in their prescribed/funded student:teacher ratio. With a 1:1 aide who can help her clean up and get her things ready a few minutes before her peers, take some breaths and squeeze a preferred toy to feel regulated, and go with her to step out of the classroom before her peers transition, she is content and successful and has no instances of running off or otherwise presenting a safety or supervision concern. The child care center does not have the funding to provide her with a 1:1 aide, nor is it legally obligated to do so. Her state does not provide any type of insurance or other funding for 1:1 aides. Her state does provide up to 40 hours per week of ABA services. Angie has enlisted an ABA therapist to remain with Tamara at child care so she can continue to attend. The ABA therapist also helps throughout the day with breaks, visual schedules, and so forth to accommodate Tamara.

Before anyone tells me that this program is billing something as ABA that is not in fact ABA, what the therapist is doing is actually a textbook ABA intervention. Chaotic transitions are an antecedent to the behavior of running off. Removing the antecedent results in the behavior no longer being necessary for the individual. While I don't see this type of ABA approach much by the ABA autism industry, it is textbook ABA and appropriate to be billed as such (as are things like task analysis, scaffolding, prompting, that all good teachers and therapists are using when needed). Again, while the ABA industry and its culture of ableism absolutely needs to be shut down, behaviorism itself just is a way to describe human behavior that we all engage in. All clinicians work based on an understanding of behavior; hopefully most of us are doing this in affirming ways that would not jump out as "behaviorism."

Braeden is a white autistic 9-year-old. His mother, Rain, received an autism diagnosis in her 40s after Braeden was diagnosed and she recognized their similarities. Rain is a self-employed graphic artist who works from home in an upper-middle-class community. Braeden was recommended a number of therapies as a young child. Rain tried some of these briefly, but found them rigid and found that Braeden was often frustrated by them. Rain now proudly describes their life as "therapy-free" and describes Braeden as a "radical unschooler" who participates in homeschooling using no curriculum, few structured classes or activities, and spends his days involved in exploring his own interests. Rain writes a popular blog promoting unschooling and rejection of all therapies. She belongs to several online radical unschooling groups made up of nearly all upper-middle-class white parents. The family's pediatrician has at a few points mentioned available therapies and suggested resources such as testing to monitor academic progress, but Rain has provided her with unschooling literature and articles about neurodiversity, and the pediatrician has been satisfied with this.

Joshua is a Black autistic 4-year-old. His mother, Tania, suspects she is probably also autistic. She mentioned this to her family physician and was immediately diagnosed with a personality disorder and denied a referral for an evaluation. Tania works from home doing electronic insurance billing for a local community health center and maintains the family right above the poverty level. Joshua has been recommended a number of therapies and placement in special education preschool. Tania has tried some of these therapies briefly, but found them rigid and found that Joshua was often frustrated by them. She has rejected the IEP and preschool placement as it was heavily behaviorally based and she could not imagine sending Joshua there. Tania has joined online homeschooling groups and is currently homeschooling Joshua using a commercial homeschooling curriculum she is able to adapt and use flexibly. He participates in music lessons, martial arts, and some online and in-person homeschool classes. The family physician asked Tania about Joshua's schooling. She talked about Joshua's routines and explained all the information she has found out about homeschooling and neurodiversity. The family physician reported the family to child services for neglect. The family was investigated and their report indicated that Joshua attends no schooling, the family is refusing recommended therapeutic services, and Tania makes off-topic remarks and appears to have mental illness. The neglect report was substantiated and the family was given a service plan requiring that Joshua attend public school and participate in home-based ABA services, and she participate in psychiatric services. Tania lost her job due to the CPS case showing on her background check and has had to take a lower-paying job at an employer that does not work with children. 

The similarities in these stories are not a coincidence; I have worked with a number of homeschooling families in various roles, and have seen these exact patterns, including a neglect finding for homeschooling a child below compulsory school age as well as investigation reports that do not mention homeschooling whatsoever and just say the child does not attend school. The patterns around professionals recognizing wealthy white folks as autistic or similarly neurodivergent while failing to recognize this in poorer and browner folks also plays out frequently in situations I see that are so similar to each other aside from demographics. The first vignette is not made of any families I have seen clinically, for what should be obvious reasons, but rather of several families I have encountered in the broader homeschooling and neurodiversity communities (who often are the ones who loudly proclaim everyone can just refuse all services). 

Alex is an autistic 10-year-old. They live in a subsidized high-rise building with their Central American immigrant parents who both have an elementary-level education. Alex will sometimes yell if something loud and unexpected happens, such as a siren or loud car radio going by. They are not distressed for long, are easily comforted by their parents, and have a healthy attitude in which they make jokes about how they startle easily and that's just how they are. When other children get into their space on the building's playground, Alex will scream at them. Alex's family has been written up by building management for Alex yelling during "quiet hours" and screaming at other children. Alex's parents have explained that Alex would be fine on the playground if peers respected their requests for space and have explained that the shouting at night is no different from other inevitable noises in a housing development, but the management does not listen, is afraid Alex will be aggressive or cause problems, and has referred them to the housing authority social worker. The social worker is requiring that Alex and his family receive therapeutic services in order to maintain their housing. Alex's parents also know the housing authority will also report them to child services for not complying. Alex's parents call the community agencies that take Medicaid to ask about psychotherapy, but the agency states the only program they have that works with autistic children is an ABA program. Alex's parents seek an evaluation from this program, which recommends the same things the family is already doing (sensory and coping strategies for re-regulating after sudden noises, practicing telling peers they do not like people to be too close) and states Alex shows no concerns for aggressive behavior. A person with letters after her name has now written an evaluation stating the same things that Alex's parents have told the housing authority, and they have listened to this person and eased up. However, the social worker verifies with Alex's parents that they will of course be doing the recommended therapy. Alex's parents don't really have much of a choice, so they agree to it. The ABA therapist comes three afternoons per week for two hours and mainly just reassures Alex and helps break down tasks as they do their homework and chores – really the exact same things Alex's parents have always done, but they now have professional reports in formal language stating that Alex is getting therapeutic support. The program they have found doesn't have any particularly new insights or really much to offer, and Alex's parents aren't crazy about the sticker charts, but they do defer to the family about goals to work on and do not insist they work with Alex out of their parents' view.

We can see the myriad systemic injustices here. There are so many things wrong with what leads us to the family being in this situation. Still, they make the choice most families would make given this set of circumstances. Because of racism and classism, the family needs someone with professional credentials to state their child is fine and harmless, which was not respected when the family stated this. Because of the intersection of ableism with racism and classism, the family is constantly under the watch of systems, where people generally have a viewpoint that anyone who is atypical in any way needs to be in formal services and that any "unusual" behavior needs to be cured even though it is not particularly limiting or distressing the person. There is also the widely held racist and classist view that poorer and browner folks need to be under the supervision of largely white professionals in order for their children to be properly cared for. We need to recognize that many families just do not have the privilege to decline recommended services. Rather than focusing advocacy on a position that families should be the ones responsible for declining problematic services, we need to focus on getting the problematic industries themselves shut down, as well as focusing on the larger systemic issues that leave families without a real option to decline.

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