Navigating “Us” vs. “Them” and the Role of Lived Experience in Regulating Ethical Healthcare Practice

A colleague shared this recent piece by a social advocate who chose to leave the practice of applied behavior analysis. The piece was noteworthy to me for a couple of reasons. First, she and I believe in a lot of the same things, broadly – inclusion, advocating across lines of lived experience for marginalized people, as allies and not as usurpers of their place in the conversation. More specifically, like her, from what I can gather from her blog, I believe in a world of co-advocacy and partnership with autistic and non-autistic people. Although I believe in the idea of the autistic cognitive architecture, I also think that, much like the idea of “white” obscures differences inside the majority culture and maintains the us vs. them system by creating a false appearance of homogeneity, recognizing that neurotypical brains vary greatly is important, as well. Like the author, I’m uninterested in curing autism – I simply want a world in which autistic people can recognize their dreams and have the means to chase them*. So, we’ve got some common basis from which to agree and disagree. Second, of course, although some time ago, I made clear that I am not an evangelist for ABA and not even a practitioner of it, myself, I did make the choice, really, and take full responsibility for it, to focus my own Center for Autism on early identification, treatment planning, and early intensive behavioral intervention, or ABA therapy, for autistic** preschoolers.

As an aside, watch this. We need to embrace and empower autistic voices.

Back to Steph’s viewpoint. I think it is an interesting viewpoint – I had not seen this particular article before, but I’m familiar with the perspective, and she has a lot of important things to say. Part of me wishes she would not have chosen to do what she did – walk away. I respect why she did it – and I could see making the same choice in her shoes. I also respect and embrace the anger. But the reality, too, is that there’s a groundswell of support behind the idea of ABA – 39 of 50 states, I think now, covering the vast majority of the population, individually passed coverage bills, most of which specifically apply to ABA (and not broadly to autism therapy). In all of these states, strong networks of the parents of autistic youth were involved in advocacy. I can’t speak for them all, but I was here, in Michigan, as a small part of this happening here, and I do know that I testified alongside autistic young adults who supported the legislation. But while the point that this did not happen over the dead bodies of autistic people, in the sense that there is disagreement amongst autistic people over the topic of early interventions, the point really is that it did happen.

Photo of one of my actual kids and one of my actual (past) therapists, both of whom I love (source: Hope Network)

Photo of one of my actual kids and one of my actual (past) therapists, both of whom I love (source: Hope Network)

Here in Michigan, we’ve added well over a thousand children to ABA therapy in the last three years. So this is a thing. And the reality is that most of the people trained in behavior analysis have no exposure, at all, to the debate on its morality – they are definitely taught ethics, but the ethics are unquestioning (or at least, they seem this way to me, based now on knowing many practicing behavior analysts) with respect to the basic tools they use, as well as the basic assumptions they make about the lives of the kids they serve***. So the result is a strong divide – hardly anyone inside the system is talking about this, and hardly anyone who is talking about this has any relationship to “the system,” which is a real barrier to positive change. This means that things even that shock the vast majority of us, about which there is little or no controversy, like the Judge Rotenberg Center, whose use of shock therapy to “treat” autism is internationally considered torture, but continues quietly in Boston, even right now****.

To me, there are two big issues we must somehow overcome, besides retaining people like Steph from the article in the conversation (if not as therapy providers, as participants in developing a more ethical range of services).

The first is addressing the lack of autistic people in the ranks of early autism service providers and developers – I think this is a real shame. It was a big deal to me to have an autistic staff member, and I finally accomplished this some three years into being at my Center, and more than two years after taking control of my Center. What I really want, but I will admit I don’t know how to do yet, is to have autistic therapists collaborating on the therapies or services for autistic kids. I really hope someday the universities who train in this area do more to get people who have lived experience to join the ranks of trainees and therapists. The problem is that none of us can ever really know exactly what it’s like to be an autistic person, and this will always be a limiting factor with respect to our ability to make ethical judgments. And given the amazing range of autistic people, unlike some other populations, this should be an addressable problem.

The second is that autistic self-advocacy is full of people who have voices – people who are not or not very “impaired” or “disabled” in the sense that society traditionally defines it, whether or not they identify themselves in that way, and who thus are able to participate in the traditional, unmodified discourse (that is ableist and assumes the kind of dialogues that neurotypical people have and use). I love these voices of autistic people, even if they are a subset of a larger whole, and I celebrate them even if they say things I don’t want to hear, but the danger implicit in this is the same kind of danger, say, that would occur if affluent black people who are isolated from deprivation, poverty, and violence, were the only advocate voices on behalf of all black people*****. Or it’s a danger I navigate, myself, when I advocate for trans people – suicidality, poverty, lack of family/community acceptance, and hate crime / violence are all real things, that happen entirely too often to “my kind,” and at the same time, I’ve never experienced any of them******. This is actually more relevant than it might seem – Ivar Lovaas, relatively later in his career, collaborated with John Money of Hopkins in developing LGBT conversion therapies, essentially applying ABA to the LGBT “problem” with disastrous consequences…. Now, many states are now in the process of making conversion therapy illegal (I hope Michigan joins, someday) and President Obama has joined this call, himself. I wasn’t taught this when I was first exposed to Lovaas’ work. I did become aware of it, shortly after I started at the Center, and ever since, I’ve always been conscious of it in trying to build and to understand.

The difference is that, although it can be hard to hear them, people marginalized for their race, their sexual/gender identities, and by poverty, deprivation, and violence – they do have voices, and more and more, they are taking their place in these advocacy frameworks. But, in the kind of neurodiversity view for which the author advocates, how exactly do voices of people who don’t have voices count? This isn’t rhetorical. It does sound entirely like the maddening conversation in which the majority always asks to be educated on the backs of the minority. At the same time, there is legitimacy in a question of how a conversation is shaped that is truly inclusive, if one believes this kind of broad neurodiversity model (and eschews the idea of any kind of therapy or special services that seek to help autistic children gain skills that neurotypical children gain and they don’t, or which NT kids gain more easily than autistic kids, whether or not they are based on a “curative” model).

And, I think there’s a complex question of how much relevance people who do have voices have to the welfare of people who don’t, although certainly, just as in the case of LGBT advocacy, lived experience should count for something, even if that lived experience necessarily has gaps with respect to the broad range of lived experiences.

Anyways, the big thing that I think, in response to this article, is that we have to learn to question the ethics and morality of everything we do – even the things we most believe in – more openly, and we have to be prepared for critical moments when it turns out we were doing the wrong thing, and be ready to change in those moments instead of doubling down. And just like we believe that our therapy can become technically better over time, we have to believe there may be ways to make it more moral and more ethical, too, and we have to set both of those goals, not just the goal for technical excellence.

I guess the problem with these none shall pass moments is that we’re always stuck in what we know today, and not what we will know, tomorrow. (source: Wikimedia)

For now, I’m trying to continue standing on the bridge and making sure that therapy is ethical and truly good for kids. I’m doing it for them, and for myself, and not for anyone else, because I don’t think they owe anyone anything. I respect Steph, the author, and her choice to advocate from the outside. I embrace the disagreements we likely have in our philosophy towards autism, and just the fact that our lived experiences are likely very different. I hope that we can both, together with actual autistic people (since that is neither of us) do something to make a world that is better for autistic kids, and autistic people generally, and I recognize that none of us knows precisely what that world will look like, because we haven’t lived there yet. But  I believe, together, I hope, with her, and with all my autistic friends, that it will be wonderful.

* And importantly, I feel I have no say in what those dreams are. That’s none of my business, unless / until someone chooses to share them with me. Certainly, I’m not in the business of telling anyone what their dream is. Although I suspect I’ll live to see my world changed in unimaginable and wonderful ways by them.

** Regarding the use of the phrase “autistic people” – this is something I encourage everybody to read. I’ve heard many people say (and probably said, at some point, myself) some kind of analogy like you wouldn’t say “cancer kids” (actually, people who’ve worked a lot with kids with cancer do, but that’s another conversation). For what it’s worth, autistic people who both use this language and recommend that others use this language recommend it precisely because they don’t think analogies like the one with cancer are appropriate. I used to more navigate the fence between parents, who preferred the “child with autism” language, and self-advocates, but I more and more give in and agree that the self advocates have it right.

*** This isn’t a criticism of Behavior Analysis. Certainly, right now, Psychology as a field (and the roots of Behavior Analysis came from within Psychology, and although many now identify their field as a different, separate field, many behavior analysts also studied psychology as undergraduates) is just visible dealing with the aftermath of a miserable ethical and moral failure. This came in the form of our field’s unwillingness to take a firm stance against torture and our allowing the American Psychological Association’s rules and ethics code to be twisted to condone and even torture. If you don’t know about it, read the Hoffman report.

**** Changes were made, albeit with a “grandfather clause” that allows some people receiving services here to still be treated with the skin shock aversive, although apparently new patients are not receiving this, any more. But that change did not come from organized rage within psychologists or behavior analysts, but from the outside.

***** Look no farther than Dr. Ben Carson, although, for all his many, many, many flaws, he is actually less racially ignorant than many of his rivals in the current Republican primaries.

****** The complex dynamics of survivor guilt play a big part in this discussion, as well, since I am, admittedly, primarily “lucky” (or privileged) to not have experienced these ills.

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