Another Parent's Take on ABA and its "Defense"

Clare Sainsbury wrote, recently:

> Personally, I do believe that there are some tools
> originating within the wider field of applied behaviour
> analysis - such as incidental teaching - which can be very
> useful (when used ethically and wisely). But the dominant
> *ideology* of "behavior modification" (as articulated by
> Lovaas, Weintraub, et. al.) appalls me.

My opinion exactly.

I am the father of an autistic son.

I'm also Aspie myself.

Ten years ago, my son attended the preschool program of the May Center in Arlington, MA, which uses ABA teaching methodologies.

These teaching methodologies work beautifully for some autistic kids, to teach them to learn how to learn. They do so precisely because they leverage the children's specifically autistic strengths: good memory, attention to detail, attention to patterns and to the continuation and breakage of patterns. They also break cognitive steps down into units that can be tuned to match the children's cognitive and sensory bandwidth and attention span -- both at the outset and as they increase over time.

In Jeremy's case, this made a world of difference: it made it possible for him to enter public school in kindergarten, in aide-assisted inclusion.

But I think the goal towards which so much autism-parent-driven ABA is geared -- that of rendering the child "indistinguishable from typical peers" -- is a dubious one at best. The goal of Jeremy's ABA curriculum at the May Center was -- by our choosing -- to help him learn how to learn, not "indistinguishability" from typical peers.

I predict there will be a lot of business for psychotherapists in another ten to twenty years, as kids trained to be "indistinguishable" encounter one or another set of stressors in their lives that kick the legs out from under the behavioral structure they are trained into, to adopt a set of behaviors and perspectives that not only run contrary to the instincts and sensibilities they were born with, but which are presented to them in a manner which thoroughly devalues those instincts and sensibilities as inferior, worthless, meaningless. When it becomes too hard or stressful to maintain the facade of "indistinguishability", the implosion of their self-esteem may be catastrophic.

This needn't be.

I am not advocating doing nothing. That is an egregiously dishonest false dichotomy into which the parents and professionals who subscribe to the whole nine yards of "indistinguishability" as the goal of ABA teaching for autistic kids try to force anyone who disagrees with their dogma. Let me put the lie to that false dichotomy right here and now. If anything is "festering" (yo Lenny Schafer...) it is the dishonesty with which ABA is all too often oversold and misapplied. To its own detriment, I am convinced.

I think it is very necessary to teach our autistic kids all about NT social norms and how to engage in them sufficiently to effectively and harmoniously accomplish their personal goals in an overwhelmingly NT world.

But that is very different from teaching them that their own autistic instincts are bad, or inferior, or meaningless.

Two analogies:

When I visit the home office of my employer, I adhere to its dress code: I wear a suit and tie. I need to do so in order to work effectively within the established norms. But I do *not* wear a suit and tie when I am in my own office (which has a "business casual" dress code), and I don't even wear "business casual" when I am not at work -- much more comfortable in my well-worn jeans. Different rules for different contexts. No single set of rules is "better" than any other; each is appropriate for its own context. We should be teaching our autistic kids behavior that way; instead of over- application of a single set of rules, they just might learn how to navigate a more complex set of differing contexts by learning how to detect those contexts and then apply the rule-set that is valid for each.

This analogy is beautiful in another respect: I decide how much time I want to spend in a suit and tie, in business casual clothes, and in jeans based on my goals for operating in the contexts associated with each. If our kids crave down-time in which they can be flappy and stimmy, don't waste your energy and theirs attempting to totally extinguish that craving. Instead, teach them in which contexts that behavior will undermine their personal goals, and in which contexts that behavior is safe and harmless to their interests. And allow them some time and space in which the latter is the case, so they can recharge. I can tolerate several hours in a suit and tie if I know I can kick into my jeans when I get home.

The other analogy has to do with what we teach our kids about their innate autistic tendencies. I think we should teach behavior the way American business people are taught the language and social and cultural skills necessary to effectively do business in Japan. We don't train American business people to become indistinguishable from their Japanese hosts; that would be folly. We don't attempt to "cure" them of their Americanism. We don't reinforce implicit messages that their American ways are inferior or meaningless. We *do* teach them all about what the cultural and social expectations of their Japanese hosts will be, and how to effectively engage with those expectations in order to accomplish their business goals.

That is how we should be teaching NT behavior to our autistic kids.

It will prevent a lot of implosions of self-esteem and crashing and burning in late adolescence and young adulthood years down the pike.

I know because I have been there and done that. As my self- awareness began to kick in in late adolescence I started to try as hard as I could to be as "normal" as I could. I could never get to 100%. I always felt inadequate or lacking depth or resilience in comparison with the "normal" people around me. I became depressed, as so many Aspie young adults do. After gingerly skating around the edges of a nervous breakdown midway through college, I spent seventeen years in talking therapy of one kind or another for depression and dysthymia... until Jeremy was diagnosed, and we started reading about AS and realized that the profiles we were reading of AS described *my* developmental history. When I started to encounter other Aspies and auties, and realized how much I shared with them in terms of cognitive style, aesthetic sensibilities, sensory needs, and social preferences, I started to give myself permission not to try so damn hard to be "normal". And *that*, more than anything in seventeen years of therapy, helped heal my wounded self-esteem.

I don't want any kids on the spectrum to have to go through such an implosion and reconstruction of self-esteem.

And I think that the way we teach NT behavior, and the way we characterize autistic behavior as we teach, is a critical factor in that, and needs to be examined and rethought.

I think the drive towards "indistinguishability" as a goal bespeaks an inner conviction that society cannot be made to accommodate even harmless eccentricities in individual behavior, preferences, and social style. I think we need to challenge that assumption. I think that at a certain point, we need to decide that we have pushed for enough change in the individual, and that now we need to push for change in the individual's surrounding social environment, to accommodate the individual.

I think that autism is not just a disability issue. When the really significant disabling factors are overcome, the remaining eccentricities become a diversity issue.

If our workplaces and other social institutions have managed to come to terms with other forms of diversity -- racial, religious, ethnic, gender, physical-disability -- then surely they have the resiliency to come to terms with neurological diversity. Surely we can demand -- and succeed in obtaining -- accommodation for the harmless eccentricities and divergence in cognitive style, aesthetic sensibilities, sensory needs, and emotional repertoire that are part and parcel of our kids' identity as people on the autism spectrum.

And for that reason I think that we need to consider how to add another component to successful, state-of-the-art teaching/intervention for autistic kids: how to become effective self- advocates. How to live life proud to be autistic, and at the same time skilled in navigating an overwhelmingly NT world.

And that is what I think ABA-based teaching should be.

As I wrote almost ten years ago: I truly do not understand why more people are not capable of laying down their ideological battle-axes and joining me in the middle ground.

I still don't understand it.

And I welcome all who read this who find that they are ready to do so. I'd like to work with those of you motivated to create ABA curricula that operate as I have described above, that teach our kids to navigate, not self-negate.

-- Phil Schwarz
Vice-President, Asperger's Association of New England
pschwarz@ix.netcom.com

home | project | library | links | discussion