I was interviewed by Spectrum Magazine about my experience with ABA. The journalist, Emily Sohn, was great. All our interactions were positive.
Somewhere between my interview with her and what was published, what I thought was going to be published was lost.
Here’s the article:
Low standards corrode quality of popular autism therapy
Here’s what I said on Twitter (see thread) about my grievances with the article:
This is the article that I'm upset about. I'm going to quote what needs to be fixed. Please @tidepoolsinc @Spectrum honor my experience. There was a deep dive. It's not reflected here with regards to my part. @thinkingautism did you feel your experiences & voice was represented? https://t.co/zG7uZe73Si— NeuroClastic #iDISSENT #noncompliant #resist (@NeuroClastic) October 28, 2020
I am publishing my responses to the journalist’s questions so that my intended message is out in the world. These responses are copied and pasted directly from email and may contain typos. Only some identifying information is redacted. Emily Sohn’s questions are in italics for readability.
Emily Sohn (ES): Would you be willing to name the company you worked for as an RBT?
Me: No. That company has people who are both clients and co-workers who personally know me. I prefer not to. You can say “in Lynchburg, VA.”
ES: Can you comment on the level of supervision there? What did you get in the way of training and supervision? Did you feel you were adequately supervised or trained, especially when starting out?
Me: I was not there long enough to be working by myself in the home with children. No one ever even brought up questions like if I would be comfortable changing diapers or using a car seat.
ES: On the same note, can you clarify how much of your dissatisfaction/frustration was from not agreeing with the philosophy of ABA and how much was from not being properly trained/supervised to do it?
Me: I was devastated unilaterally. I do not want to perform important work by being alone. I’m very academically oriented. Because of my intense curiosity and near-eidetic memory, I have always been the first in any class to catch onto material and internalize it, assimilate it into my internal knowledge bank.
I think what distressed me the most was that it was in direct conflict with what I had learned about the neuroscience and healthy development of children. It was anti-psychology.
ES: In the example you gave me of the 10-year old boy who had memorized movie scripts, tell me if I have this right (some questions included):
ES: Your supervisor told you that he could not communicate at all, right? Or could not communicate well?
Me: Yes, I was told that his communication was “not functional” and that “it didn’t mean anything.”
ES: But you realized that he was communicating with nuance and intelligence via quotes from movie scripts?
Me: Yes. He was actually insulting them in a playful way. It demonstrated that he understood what they were saying, the unspoken subtext, and what the context-dependent movie quotes meant in that situation.
ES: You were supposed to reward him with candy and Cheerios for..doing what?
Me: We were giving rewards for very basic tasks like putting a block on top of another block. It seemed that mostly, we just did the things from his goals by logging his accuracy with performing pointless tasks just to “get it over with” so he could play in the environment he was in. Often, there would be two or three RBTs who would schedule to have their clients together at one place at the same time. So, they did the trivial tasks, then played with the other kids in the environment.
Honestly, I think that there was more value in just having caring people who could take them out and let them interact with friends (other autistic kids) and play in a library or playground. [Personal anecdote about a client redacted]
ES: Who was telling you to work that way? (And were they actively supervising you?)
Me: It was relaxed compared to most ABA. The supervisor really was of the philosophy that kids should just play. Because of this, I think my brief tenure in ABA was not indicative of the more sinister “programming” that can happen. My supervisor, the BCBA, was neurodivergent himself and was [redacted for possible identifying information]. He was like Patch Adams. He was (affectionately) a “big kid.” Then, he was fired, and I was laid off.
ES: But you didn’t agree with that method, right? Did you do something else instead?
Me: I didn’t agree with ANY of the methods and thought they were so dehumanizing. It was training kids to be compliant with tasks that weren’t essential or meaningful (to them, or even objectively meaningful). It wasn’t organic. It didn’t have any flexibility. It didn’t matter where the kid was in the moment. You had these hours to perform these tasks, and those tasks were not relevant to the current situation.
I used more of an English teacher (Which I’d been for 14 years) approach with the client with whom I most interacted. I also made some PowerPoints and brought over some audiobooks for his sibling because the mother had asked if I knew about dyslexia and helping kids with reading comprehension. It was inappropriate, professionally, to do that.
It was a bad fit to put somebody like me in this position where I’m training with 18 year olds who have babysat or worked in a church nursery. I was a skilled professional who was very intuitive with neurodivergent kids (because I was ND). I was being asked to do meaningless work when I was very qualified and capable of helping meet the kids where they were and working with them where they were.
ES: Do you feel like what you were told to do aligned with how ABA should work if done well?
Me: No. Most ABA is more strident and intensive— which means it is more harmful. I’m grateful that the harm was minimized by the laxity of the company culture.
ES: Re: when your daughter [name redacted] was being evaluated for autism: How old was she?
Me: 22 months
ES: Is this accurate? : a social worker told you that [name redacted] was severely intellectually disabled and needed intensive behavior training.
Me: Yes. She had a social worker, a nurse practitioner or physician’s assistant, an OT, and an SLP at her evaluations. They told me she had “severe classic autism” and that it was not “your and your husband’s Asperger’s.”
ES: [Name redacted] was a late talker and didn’t seem to be paying attention when an evaluator [WAS THAT THE SOCIAL WORKER?] showed her a picture of a shape and asked her to say, “Shape.”
Me: I think it was the speech therapist who kept trying to show [name redacted] the shape, but the social worker was in the room. That was when [redacted] rolled her eyes and said, “It’s a parallelogram.” That was at 23.5 months (at the second evaluation). She was officially diagnosed with autism, hyperlexia, and severe sensory processing disorder 4 months later by a developmental pediatrician. The early intervention team were unable to officially diagnose, but did note that she met all criteria for autism spectrum disorder.
Then there was another round in another email. Here’s how I started my reply:
ES: One lingering bit of confusion for me comes from some differences in the timeline from what we talked about in our phone call and what you wrote in your blog post, so I’m assuming I’m confusing multiple stories. Tell me if the following is an accurate chronology (or comment in another color or bold or something about anything I’m off on):
- ES: When Terra Vance enrolled in a course to become a registered behavior technician (RBT) in 2016, she had already worked with children for years.
Me: I didn’t enroll myself in the course. I was wanting to get supervised hours in mental health for my psychology license, so I took a job working with adults with mental illness; however, after I accepted the position, I was told that they needed me to do ABA therapy instead. This was in 2015. I was only there for approximately 3-4 weeks. This was also the same span of time that I became pregnant [redacted personal information].
I prefer that we leave too many specifics about [redacted] out of print for her own privacy, especially exact age.
- ES: She had spent 14 years as a high-school English teacher, had experience teaching autistic students, and was working toward her license in clinical psychology.
Me: Yes. High school and middle school English. Most of my tenure was in a middle school. My classes became increasingly more populated by autistic students every year as I developed a reputation for being great with autistic kids.
- ES: As part of the licensing process, she took a job working with adults who had mental illnesses for a company in Lynchburg, Virginia.
Me: It wasn’t exactly part of the licensing process. It’s just that all people who apply for certain credentials in behavioral science fields have to have worked a number of hours under supervisors with relevant credentials.
- ES: But her employer encouraged her to pursue the RBT certification because it would qualify her to deliver ABA. The company had a backlog of referrals for ABA they wanted her help with.
Me: Yes, he pushed me to do ABA because they had a backlog. Everyone they hired got enrolled in Relias and was given a login. I did not have to pay for the course. There were quite a few new hires at the same time as me, and some quit before even finishing training. It’s a very high turnover job.
- ES: [Is this right? That your employer had you do the RBT course after they hired you? Or did you get the RBT certification and then get a job somewhere else with an agency?]
- Vance paid $99 to a company called Relias and completed the course online over a weekend.
Me: I didn’t pay anything. Not sure where that number came from 😂
- ES: Soon Vance started delivering ABA.
Me: I only delivered ABA while accompanying an RBT on her caseloads. I really only worked with one kid two times. The rest was just observing and learning about the bizarre language and prompts/goals/mands of ABA. It seemed so ridiculous.
- ES: How soon after taking the course did you start delivering ABA?
ME: I really didn’t work long enough to deliver ABA. I observed other RBTs by meeting them places around town and at one client’s house. There was a boy I worked a little with and made some power point presentations. I could tell the RBT was frustrated with me on my last day of actual work because I was too organic and didn’t follow the program closely enough (or at all). It was very counter intuitive to what the boy needed and seemed to not understand who he was as a person.
- ES: No one contacted her references. She says she is not sure how anyone determined her fitness for the job.
Me: Correct. I did have letters of recommendation, but no one contacted anyone to verify nor did they reach out to my references. I was significantly more qualified than the other new hires, many of whom only had a high school degree or GED.
- ES: Confused about this – were you already employed when you took the course? Or took the course and then took a job with an agency?
Me: I answered this above.
[questions redacted about daughter]
- ES: Did you consider ABA for her?
Me: Absolutely not, though it’s been aggressively pushed by numerous professionals.
- ES: Did your experience with delivering ABA affect your approach toward therapy for [name redacted]?
Me: [Paragraph breaks added for accessibility] Maybe? in that I was just more stridently irreverent and dismissive of developmental timelines and trying to “program” my child. I parented the way that felt natural to be, which was to take a low-demand, low arousal approach that gives extreme respect to meeting her needs and not trying to remediate her.
I did briefly have her in occupational therapy, but was extremely mindful (hawkish, really) about blocking anything that seemed to disrespect [name redacted] autonomy, her emotions, or her consent. At 4 1/3 years old, I’ve never even considered using any kind of punishment or time out or aggressive demonstrations of power imbalance.
I think I’m raising a phenomenal, thoughtful, caring, emotionally supported, happy child, and that’s what matters. She still doesn’t do some things that kids half her age typically can do. But other things she does are beyond what adults can do. I mainly follow her lead, which is what comes naturally to me. I hate words like comply, obey, and control.
That’s how I felt the boy was being treated who had all the mature Superhero movies memorized. He thought in archetypes, like all of the greatest spirits from literary and historical acclaim, and that was how language acquisition and communication worked for him. He had a fascinating and sophisticated mind, and very limited or inconsistent control over his body. But the tasks he was given were so menial.
I’ve honestly mourned greatly thinking about him and the pre-teen boy for whom I made the PowerPoints. In a perfect world, I’d have been liberated to explore with curiosity and humility to learn from them and how I could support them. ABA was a stale, lifeless, conscripted way of interacting that made intuitive interaction the enemy of its “science.”
The real evidence was in the countless kids I’d worked with for whom I was the first person who ever “clicked” with them. The evidence would have been if they let me not attempt to modify behavior but to learn why it happens and support the kids in the ways that made sense.
If someone can memorize monologues and quote them with exact language, timing, cadence, intonation contours, and even subtle accent differences, then use those to metaphorically address some social nuance that makes it clear that they realize the absurdity and satire that is “normal” human interaction, the focus should be on how to help other people recognize that kind of brilliance and interact on their terms.
I can’t begin to express how devastated it makes me feel that I don’t believe that boy will ever find someone who even can begin to understand him or who will have the curiosity to try. He’ll be typecast as “nonverbal” and his communicating as “not communication” or “meaningless.”
He’ll have people with the basest of preconceptions seeing him as a mindless burden, an automaton, intellectually disabled. They’ll not ever understand that his emotional distress is a direct result of never having a witness to what he can do.
He will likely end up in an institution, if he isn’t already. I’ll never forget the unadulterated joy he experienced at the splash park when the giant bucket would fill enough to tip over and dump a momentary monsoon onto him, and how parents ushered their kids away from him like he was dangerous, or moms looked at each other with that, “I wish someone would discipline that freak” look.
I’m actually bawling right now. I’m sorry for all that information you didn’t ask to have dumped on you, and I didn’t realize I was typing so much. I guess I was exorcising some trauma.
We’re not made for this world that values the status quo and sees any affront to “typical” as a threat or as a manifestation of being broken. For all that boy suffered, he had the freedom of having nothing to lose. He gave zero fucks about what people thought of him. He seized the moment and was in a level of bliss on a plane of honesty most people won’t ever know.
We should be learning from these kids what we’ve lost in our layers of artifice that are lifeless and uninspired and without even the allowance of the possibility that originality is still possible. ABA is a science of determinism, which conceives of humans and any organism as a product of their circumstances. Who would even want to put a cage around the hope of possibility?
But yeah, we’re the broken ones, right?
My favorite fridge magnet over my daughter’s “artwork.” (Most everything is a canvas here)
A final email from me to Emily Sohn I mistakenly hadn’t sent earlier:
ES: Hi, one more question for now before we get to fact-check:
- Re: the 10-year old boy you worked with, you told me that, instead of engaging with him on his own terms, you was supposed to reward him with candy and Cheerios for communicating in desired ways and doing trivial tasks, such as stacking blocks.
- Can you be more specific about what the “desired ways” of communicating were?
Me: Emily, below is the email I never hit “send” on, in case it’s helpful, haha.
To be clear, I am not 100% sure I recall the exact “reward” or what specifically it was (RE: small morsels of food) that they were giving him. I do remember one person having cereal in a bag (maybe cheerios or fruit loops) and one person having skittles. I know that doesn’t matter, but I am relentlessly accurate. You could say “small food portions like a cheerio or skittles” to be accurate.
I’ll give an example:
The 10-year-old (we can call him Martin) was supposed to do something with blocks that are typically used with toddlers. They were this kind of block:
It wasn’t so much that he couldn’t mash blocks together because he was already doing that, but that he wasn’t doing their commands. He wanted to play, there was another caseworker with another autistic kid who was nonspeaking, and they were socializing in their own way. They were clearly buddies. Anyway, they were playing with the blocks, mostly fidgeting with them or lining them up, but the point wasn’t to “play.” It was to follow a command.
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@Terra, is this an endemic problem with Spectrum Magazine. Is it generally supportive of ABA? I can’t even imagine going through that sort of therapy.
It is an endemic problem. They knew what they did
You continue to educate folks.
Good Teach! 🙂
Keep posting your work! And we will keep sharing. It must change. It must.
“ABA” does not mean one set of practices. Every student has different programs to do, so some students may have a terrible plan, and others may have a good one. I am on the spectrum, and I went through ABA, which made my life better. ABA was emotionally stressful, but there are also many people who find math class stressful, and they still have to do math. It was no worse than taking a class, and it really improved my abilities to succeed in life.