CW: ableism, suicide
ABA with autistic children was literally created with the goal of making them “indistinguishable from their typically developing peers.” With the focus being only on observable and measurable behaviors to outsiders, the radical behaviorist roots of ABA as a therapy for autism becomes questionable at best. In standard practice, it’s rare to see private events being given the attention and consideration they deserve, and there’s no evidence whatsoever that Lovaas did. When comparing across fields, behavior analytic research always stands out as being hyper-focused on comparing autistic children to neurotypical children. The effectiveness of the intervention is then purely measured by the fact that the participants in the given study did not appear neurotypical before the intervention and now do appear at least more neurotypical in the targeted way. Success!
Other than preference assessments, the child’s preferences and goals are never considered. Usually input is drawn exclusively from feedback from caregivers, such as parents or teachers, or simply decided by the researchers themselves, with caregiver permission then obtained. Rarely if ever is there assent or consent obtained from the learner. Occasionally, an excuse will be provided along the lines of the learners having very high support needs in the areas of language and comprehension, but when the participants do not have these traits, this aspect is generally ignored and completely avoided.
Yet the ubiquitous argument for ABA as a therapy for autism is that it’s in the learner’s best interests, that we’re doing them a favor. Now that autistics are able to amplify their voices and provide us feedback, it’s unsurprisingly apparent that none of them ever wished to emulate their neurotypical peers so obsessively. In fact, just the opposite, and more often than not, these former ABA “clients” suffer trauma as a result.
Assessments are built with this goal in mind
One of the best and worst things I’ve ever done is do the amount of research on Lovaas that I did. Since then, all I see when I look at our assessments is Lovaas and the goal of making autistic kids appear more typical. Really look into some of the milestones on the VB-MAPP and the ABLLS-R, and question what the value is. Is it really a vital part of a person’s life to be able to roll a ball to another person at least 8 feet for at least 3 exchanges?
On the VB-MAPP’s barriers to learning, there’s eye contact, which has been pretty extensively discussed. Long story short, lack of eye contact is not a barrier to learning. Forcing eye contact is a barrier to learning. While assessments can have value as a source of guidance for coming up with goals– mostly because we don’t have anything better– they should hardly be the deciding factors for prioritizing.
Our assessments are also normative-based, not developmentally-based. There’s nothing in them having anything to do with skills that are actually essential for living, with perhaps the exception of Patrick McGreevy’s aptly-named Essentials for Living assessment. It’s not perfect, but it’s better. This becomes especially problematic when you consider the amount of BCBAs with no real training in program development and goal prioritization. Instead, they simply aim to fill in all of the open spaces on said assessment.
And unfortunately, there’s an incredibly problematic tendency among these BCBAs to view their learners not as whole people, but as little, walking, incomplete assessments. It shows in the goals they create, the way they create them, and the way they generally interact with these learners. It’s rote, robotic, and rigid, and yet that’s never discussed unless the person demonstrating those traits is autistic.
Not only do we need to train BCBAs to actually use ABA to write goals instead of just programming off of the assessments, but we also need more research to come up with an assessment that will actually measure necessary skills. What skills actually benefit a person in their life, as opposed to making them appear more neurotypical? Instead of calling any communication other than vocal “a deficit,” explore across various types of communication. Instead of pushing for neurotypical play, look at if the individual has interests and is able to engage and build on them.
Yes, I want to do this project, but I need a team and that team needs to include autistic professionals.
Harmful Goals
Going along with the issues with assessments, harmful goals are still lingering. This is also what happens when BCBAs are trained to program off of these assessments rather than looking at the whole, individual human. Especially social and play skill domains are in no way in the best interest of any autistic learner. What they teach in place of actual skills is masking. Defenders of teaching masking claim that these behaviors will help autistic kids “fit in” and make friends with their typically-developing peers.
First of all, how does emulating one’s peers at the expense of who one is as a person benefit a person in the long run? The psychological effects of masking have since been pretty well-researched and it’s widely considered a contributing factor to the alarmingly high rates of suicide among autistics. These statistics are mirrored among the LGBTQ population (of which many autistics are a part) in which suicide and depression rates are drastically lower among teens and adults whose families support them, such as by using preferred names and pronouns, and accepting same-sex partners.
It’s a little sad that we need scientific research to show that being allowed to be one’s authentic self is psychologically healthier than being forced to pretend all the time, but here we are, and the information is there.
As I’ve continuously harped on, the Nora Project seems to be the only organization out there that recognizes that it’s not the disabled people whose behavior needs to change, but the typical people around them, and that could not be more true of ABA. The goal of forcing disabled people to appear as non-disabled as possible is at the core of our practice. The argument that autistic advocates who have gone through ABA are simply not appreciating the skills they have is a non-sequitur. Their ability to appear neurotypical is not necessarily a good thing, and the cost to their health fails to justify any of it.
Going back to play “skills”
What is the point of “appropriate play” when all it does is appear more similar to how typical kids play? Observation shows that autistics accomplish the exact same goals with their own play as typical kids, it just looks different. Rote play and masking reactions don’t meet the criteria of play either, no matter how much we teach the child to smile while doing it.
I summarized the results of my obsessive dive into play skills research here and here, but it’s worth bringing up again, especially in the context of goals. Play skills are considered a “core deficit” of autism and thus, something insurance companies like to see in order to approve services, but that’s a whole other post. It’s true that play has many benefits to development, but there isn’t a set definition of what play is. What there are though, are some relatively consistent descriptors across non-ABA-related fields: Child-led, intrinsically motivated, immersive, spontaneous, and enjoyable.
ABA stands alone as the only one with rigid definitions of play based solely on normative data and qualitative observations from typically-developing children.
As such, nothing in the ABA research on “building play skills” currently has anything to do with actual play. It was nearly all rote, extrinsically motivated, and usually had to be shaped, indicating that it probably wasn’t even that fun for the learner most of the time. We can’t measure if a child is “having fun,” but we can measure if, when given free choice, they opt to engage in those activities (i.e. generalization), and in much of this research, they didn’t. The only exceptions were when part of the protocol included literally training the child to choose certain activities. Thus, once again, the choices aren’t really open.
By failing to meet the criteria of play, we are robbing children of the opportunity to benefit from play. Ironic, considering the justification for these goals is so they will gain skills through play. How are we defining benefit though? If the stated benefit is that they will “fit in” with their typically- developing peers, well, then the use of that word is highly questionable. If we are looking at the actual benefits of play– problem-solving, natural-environment learning, motor development, etc.– then most autistic kids don’t actually have any deficits in play.
The goal should be for a child to be allowed to have fun in their own way. Perhaps being able to share that experience with an adult would be worthwhile as it can allow for child-led learning with adult guidance. That isn’t going to happen though if, when the adult joins them in play, they begin dictating what the child should and shouldn’t do. That’s not play, that’s work with more toys on the floor.
How to choose goals
I’m not going to say throw away all of your assessments… yet. Keep them until we’re able to develop something better. However, be willing to throw out parts of the assessment. I’m not above literally crossing off certain “skills” or even whole domains. Compare the skills on them to what’s developmentally-necessary, and go from there. Our current assessments have some value, such as ways to break down some skills into smaller steps, but we should be working to otherwise make them obsolete.
Consider your goals very closely. What are you trying to teach? If it has anything to do with “appearing normal,” scrap it. If you can’t think of a way your goal will actually directly benefit the learner other than “fitting in” or some other type of avoiding inconveniencing others, try again.