The Casual Disregard Of The Neurodivergent Voice

I had the pleasure of watching the 2017 BBC2 TV movie "Chris Packham: Asperger’s and Me" (IMDB, BBC) recently. The whole film is (as far as I’m aware) NOT available for purchase or viewing any longer, although Packham’s new documentary, Inside Our Autistic Minds, is available on the BBC iPlayer for those in the UK.

There were two brief instances from "Asperger’s and Me" that really highlight why I have such a big problem with Applied Behavioral Analysis (ABA) as well as its largest proponent, "Autism Speaks." I excerpted the two clips for this discussion (YouTube, Vimeo), though I’ve transcribed the audio below if you cannot watch or the embed is broken.

In the first section, Chris Packham (the host) is speaking to Joann, whose autistic son is being treated with TMS during a clinical trial.

PACKHAM: You’ve brought up an autistic son. I think a lot of people probably don’t realize the enormous amount of energy and the difference that impacts on the family. that’s hard.

JOANN: it’s very hard and that’s why autism is very isolating for families. it’s it’s exhausting to meet the needs to meet the safety, you know, there’s divorce, there’s bankruptcies… because everything goes into the safety well-being and treatments for our kids.

PACKHAM: it’s it it is you know painful to watch I’ve been there I’ve struggled myself so you know in that sense you know you’re looking for any form of cure at times you see him failing and that’s that’s uncomfortable. If another therapy arose whereby you could cure autism. [JOANN’S FACE TWITCHES] What would you think of that?

JOANN: I think on a bad, frustrating day, I’d say yes. I think on a day like today, where I’ve never been so proud of him, I’d say no. It’s complicated, but on the on the bad days, absolutely.

There’s two things of note here: Joann’s not quite hidden reaction to the idea of a "cure" is the first.

The second, and more important one, is that while Packham speaks of the the challenges his autism has caused for him, Joann (without malice) focuses on the ways that her son’s autism has effected the family.

The second clip is a stark contrast. In this section, Packham interviews Vincent Strully, who founded the New England Center for Children, which heavily relies on Applied Behavioral Analysis therapy. During the introduction to this bit, Packham commented on how unfriendly the school Strully founded is for those with sensory processing issues, which is common in autistic people.

Strully compares ABA to "chemotherapy," awkwardly trying to joke that chemotherapy was originally considered "poison."

Except that is a fairly accurate description of chemotherapy — it’s just that chemotherapy is designed to kill the cancer faster than the patient. Strully, who is NOT a doctor of any kind, as he only holds a bachelor’s in political science, is clearly unaware of this fact.

Yet Strully has unexpectedly made a perfect analogy. ABA is about deliberately removing autistic behaviors so that "professional observers would not be able to tell the autistic child [is autistic]."

The question — just as it is with chemotherapy — is whether or not that treatment is worse than what it proports to cure.

That is a deeply personal and subjective question with chemotherapy, and one where there is no one-size-fits-all answer. Packham muses on this throughout the documentary. He recognizes that he has relatively low support needs, and while the world may be difficult at times for Packham, he recognizes that other people with higher support needs may have a far worse subjective experience.

Strully, on the other hand, has absolutely no hesitation in knowing what is "best" for other people.

STRULLY: This is educational chemotherapy for these kids. Who wouldn’t deny them the chemical or medical chemotherapy they need for their cancer, but to deny them the the work that we and our colleagues around the country are doing successfully? Is, you know, it’s just wrong.

PACKHAM: If you could, would you cure autism?

STRULLY: If I could, of course. And that would be a prayer come true.

Strully’s language makes it clear that he views neurodiversity as a disease — he literally compares autism to cancer — and that the goal of the treatment is to make autistic people more convenient for society, not the other way around. The quick, thoughtless arrogance that Strully shows here seems like it should be the exception.

It is not.

Physicians — even those who are the heads of "Autism and Psychology" at major healthcare corporations — who acknowledge that "each person with ASD presents unique experiences which can make finding effective care more difficult as it’s often personalized to an individual’s specific needs" will then immediately turn around and advocate that ABA therapy is the appropriate therapy for all autistic people.

While "Autism Speaks" continues to receive criticism from actually autistic and neurodivergent people, the organization — which is also a staunch advocate of ABA — is regularly cited by network and cable news.

The optimistic part of me thinks that ABA’s popularity is due to big business, with its largest proponents and advocates either not being qualified (cough Strully cough) or are burdened with enormous financial conflicts of interest.

The pessimist side of me thinks that ABA’s popularity is because of its patronizing arrogance that values other’s convenience over the autistic person’s needs.

But it does not have to be this way.

On the "1800 Seconds On Autism" BBC podcast, Packham was interviewed by hosts Robyn Steward and Jamie Knight (audio, transcript).

One of the things Packham talks about is working with his allistic (or neurotypical) colleagues. Packham said, "…very often I’d be working in situations which I was finding suboptimal or occasionally difficult. But now I’m just candid and upfront, and I find that the people that I work with are enormously respectful. They might do very often small changes, which mean that I can become a far more effective and productive part of the team."

When I mention these kinds of accommodations to others, I often get a lot of pushback. The allistic person seems to expect that there will be huge, taxing demands made of them. Their focus is not on the overall productivity of the team, but instead on how inconvenient whatever accommodations will be for them.

Consider: It is now commonplace to talk about people with "different learning styles" and to make sure that any training — including the most routine annual training at a workplace — makes an effort to address visual, auditory, kinesthetic, and reading/writing learners.

Yet a neurodivergent person’s need for specific, detailed instructions or direct communication styles is somehow seen as too great a burden. Instead of minor changes being made to improve both the employee’s quality of life and the effectiveness of the work unit as a whole, neurodivergent persons are forced to work in allistic conditions.

A personal example: I work quickly and effectively with fast and rhythmic music in the background, with as few vocals as possible. (Thank goodness for Digitally Imported.) If there are conversations or other snippets of "words" flying about (such as in the lyrics of pretty much any top 40 pop song), it makes it extremely difficult for me to focus.

But for years my co-workers actively tried to exclude my few selections from the music playing at the office. As I wrote in 2019:

[Imagine that] the people around you would rather make you listen to music you hate all the time rather than let a single song you care for play once every hour or two.

How would you feel in that situation? How hurt would you be after seeing that your peers would rather have you be uncomfortable all the time rather than give up their preference for what they want all the time? That even though you went out of your way to make sure others felt included, they actively excluded you?

I did not realize at the time that my own flavor of neurodivergence was what made it so disruptive and difficult for me.

But I definitely realized how much their actions had both my productivity and feelings of isolation.

The mindset behind ABA and that kind of lack of accommodation is unneeded, wasteful, and cruel.

Like Packham, I am certain there are those neurodivergent people who would take a cure, where the differences in their brains get in the way of what that person wants. And make no mistake, I am far more aware than most of the emotional, financial, and even physical toll that neurodivergence can take on a family.

But I also wonder how many people feel that way not because of their own needs and desires, but because everyone else simply cannot be bothered to take enough time to think about someone else’s needs.

Featured Image by nugroho dwi hartawan from Pixabay