Recovery: debate diminishes opportunity

- © 2001, Catherine Maurice PhD

In 2001, Catherine Maurice (ASAT Advisory Board Member) was asked to respond to a letter of invitation to contribute to a special issue of the online journal, Leadership Perspectives in Developmental Disabilities. The letter read, in part, as follows:

“For the fourth issue, we wish to engage experts and consumers from around the country in a debate concerning the merits of early intensive behavioral intervention (EIBI) for 3 to 7 year old children diagnosed with autism…We recognize that the concept of “recovery” is hotly debated within the consumer and professional community; it is for this very reason want to address the issue head on in order to start a dialogue about the merits of EIBI.

The working title for the fourth issue of Leadership Perspectives is, “Autism Recovery Intervention for Young Children: Does it Work?” Topic areas we are interested in publishing include:

  • Is the concept of recovery a useful term to use?
  • Is there data to substantiate recovery?
  • Is there evidence to imply that data suggesting recovery is an artifact of subject selection or other variables?
  • Are recovery treatment procedures varied or similar in nature?
  • What are the critical elements of any recovery treatment attempt?
  • What are the barriers to providing recovery intervention?
  • The workforce considerations associated with recovery intervention
  • Are there ethical issues associated with recovery?
  • What is the economic implication of wide scale recovery attempts? “

Maurice’s response is excerpted here:

It does not take an advanced degree in literary criticism to detect a certain level of skepticism in this letter. These questions seem rather biased against early intensive behavioral intervention1 and the possibility of recovery from autism. Far from displaying any enthusiasm or even neutrality before either of these concepts, this letter seems to be inviting attack, from every possible angle.

  • Are there ethical issues associated with recovery?
  • What is the economic implication of wide scale recovery attempts?

Just substitute the word “cancer” for “autism” and any “lay person” could detect a slightly subversive note:

  • Are there ethical issues associated with recovery from cancer?
  • What is the economic implication of wide scale attempts to recover people from cancer?

It seems to me that these questions amount to little more than a call for ammunition against the rising demand for science-based, effective treatment, which at this moment in time happens to be anchored in the field of applied behavior analysis. Yes, aiming for and achieving recovery from autism is expensive. So is chemotherapy. So is a lifetime of state-supported custodial care. Why would we not attempt to recover anyone from cancer, or autism? No, we cannot guarantee cure or recovery for anyone, but is that sufficient reason to lower the bar? Do we start deciding how many people should have access to science-based treatments for cancer? Do we start deciding how many children should have access to ABA?2

  • Is the concept of recovery a useful term to use?
  • Is there data to substantiate recovery?

The very form of the questions implies that the correct answer to both questions is “No, of course not.” Again, think of the implications if we asked: “Is the concept of recovery from cancer a useful term to use?” It is only when we already hold an assumption that autism is forever that we question whether the “concept of recovery is a useful term.”3

But let’s step back, and look at a more serious complication. What is problematic here is not only the implicit skepticism about recovery, but also the confusion, manifest in this letter and in much of the anti-behavioral backlash literature, between the goal of recovery, and the goal of bringing children effective treatment. We need to set both goals for our children, with the understanding that under our present system of knowledge, only some children will achieve the first goal, but all children with autism can and should be offered effective treatment. At the present time, it is behavioral intervention that has published the most documented success in enabling children to learn. Whether or not recovery happens, behavioral intervention offers more concrete evidence of effectiveness than any of the dozens of treatment options currently being touted as effective for autism.4

This letter uses a term, “recovery treatment procedure.” What is that? EIBI is not a “recovery treatment procedure” although it may have that effect on some children. All treatment should be designed to maximize a child’s learning potential, to bring him or her as far as we can. Is this letter implying that if you want to aim for recovery, you use EIBI (otherwise called “recovery treatment procedure”), and if you want to aim for something else, you use another kind of therapy? What other therapy would that be, and what data exist to support the effectiveness of that therapy?

No one I know has ever claimed that EIBI will produce recovery in all children. But we do know that intensive behavioral intervention can improve the prognosis for people with autism. Undermining the notion of recovery and then calling early intensive behavioral intervention a “recovery treatment procedure” is another way of dismissing behavioral intervention.

  • Is there evidence to imply that data suggesting recovery is an artifact of subject selection or other variables?

When I showed this question to my husband, he laughed and parodied the classic prejudicial question: “When did you stop beating your wife?” Those of us who are veterans of the autism wars recognize this question. It’s an easy attack, constantly repeated. If a child recovers from autism, the old guard is sure to offer one of three possible explanations.

  1. He was very high functioning, and “selected” for intensive treatment.
  2. He was never autistic at all. (Sorry! We didn’t mean it!)
  3. He was autistic, and still is autistic. Although he looks and acts recovered, he is actually a trained robot, conditioned to respond to certain stimuli – but, deep inside, still autistic.
  4. If my own tone sounds impatient, I apologize. But, after a dozen years, I no longer know what it will take to convince the people in power that the data are there, have been there for a while, and their job is to pay attention to the data. Moreover, the data do not “suggest” that early intensive ABA is effective in remediating many symptoms of autism, the data demonstrate that gains achieved through such intervention are real, and enduring5 There is data not only “suggesting” the possibility of recovery, but also validating it over time.6

Why is this topic of early intensive behavioral intervention, its value, and its ability to produce recovery in at least some children still “hotly debated” at all? How many more decades will it take for the establishment to accept the evidence that already exists? It is astonishing to me that various special educators and psychologists keep calling for more data to substantiate the value of intensive behavioral intervention, and yet they themselves have produced no data to speak of that validate approaches such as play therapy, therapeutic nurseries, special education and psychotherapy. How much more debate do we have to engage in, as generations of autistic children founder?

It’s easy to attack ABA by attacking the notion of recovery. But this controversy is not solely about recovery. This is not solely about defending the truth of my children’s or of anyone else’s child’s real and enduring recovery. This is a matter of knowing that a powerful teaching technology exists, but that parents are unable to access it for their child. It is a matter of knowing that parents are blocked at every turn by a stonewalling establishment. It is knowing that only a handful of good behaviorally-based programs exist in this country, and that, if this resistance continues, we will not see any more any time soon.

  • What are the barriers to providing recovery intervention?

Money, for one thing. A scarcity of trained providers in behavioral treatment, for another. But professional skepticism and a refusal to accept hard evidence play into which programs get funded and which do not. If a majority those in power denigrate ABA, and deny the reality of recovery, only the wealthy or lucky will access this intervention for their children.

  • Are recovery treatment procedures varied or similar in nature?
  • What are the critical elements of any recovery treatment attempt?

These are, in fact, good questions, provided we substitute the phrase “Effective, data-based treatments” for the silly phrase “recovery treatment procedures.” The Association for Science in Autism Treatment (ASAT) is working on analyzing these and similar questions. We know there is still much work to be done in defining the critical components of effective behavioral treatment models, and in defining the critical skills and knowledge demanded of a qualified provider. It would be very helpful if the professional community could leave the debate stage behind, and help us in our attempts to bring accurate information to families, and increased access to effective treatment.

I work with people whose children have not recovered. They and I hope that some day science will produce an easier, faster, and more effective treatment than that promised through ABA. We hope that current research on neurobiology, immunology and genetics will lead us there. But meanwhile, we know that ABA can offer children and adults with autism increased opportunity for learning, and in some cases, for recovery.

Footnotes

1When I refer to behavioral intervention, applied behavior analysis (ABA), or early intensive behavioral intervention (EIBI), I mean intervention that employs the principles and methods of behavior analysis, not generic early intervention programs that purport to be “behavioral” but actually employ only a few superficial behavioral techniques.

2Jacobson, J.W., Mulick, J.A., & Green, G. (1998). Cost-benefit estimates for early intensive behavioral intervention for young children with autism: General model and single state case.Behavioral Interventions, 13, 201-226. [Offers a well-reasoned analysis of this topic]

3The question is illogical as well because the word concept is being used to mean the word term.

4Clinical Practive Guidelines: Report of the Recommendations. Autism/Pervasive Developmental Disorders, Assessment and Intervention for Young Children, 1999 Publication No. 4215. New York State Department of Health, PO Box 2000, Albany, New York 12220.

5For an overview of research on this subject, see:
Green, G. (1996). Early Behavioral Intervention for Autism. What Does Research Tell Us? In C. Maurice, G.Green, and S.C. Luce, (Eds.), Behavioral Intervention for Young Children with Autism: A Manual for Parents and Professionals, Austin, TX. Pro-Ed.
Clinical Practive Guidelines: Report of the Recommendations. Autism/Pervasive Developmental Disorders, Assessment and Intervention for Young Children, 1999 Publication No. 4215. New York State Department of Health, PO Box 2000, Albany, New York 12220.

6Lovaas, O.I. (1987). Behavioral treatment and normal educational and intellectual functioning in young autistic children. Journal of Consulting and Clinical Psychology, 55, 3-9.
McEachin, J.J., Smith, T., & Lovaas, O.I. (1993). Long-term outcome for children with autism who received early intensive behavioral treatment. American Journal on Mental Retardation, 4, 359-372.
Perry, R. Cohen, I., & DeCarlo, R (1995). Case Study: Deterioration, autism, and recovery in two siblings. Journal of the American Academy of Child and Adolescent Psychiatry, 34, 232-237.

This article originally appeared in an issue of “Science in Autism Treatment”, the newsletter of the Association for Science in Autism Treatment (ASAT). It may not be republished or reprinted without advance permission from ASAT. For reprint permission please contact reprints@www.asatonline.org