Saturday, April 15, 2006

Recovery



At the midway point of Autism Awareness month I wanted to post this letter written by Catherine Maurice. Her books, "Let Me Hear Your Voice" and the "ME book" were the first two tomes about Autism I read. I will be forever grateful to Dr. McCallon for such excellent advice upon diagnosing Abby. Catherine Maurice's books gave me the tangible hope I needed to get this journey underway.
I am posting this letter as a reminder to everyone that Autism is not a "culture."
It is also not a death sentence. There is hope, always hope and recovery DOES happen. It happens around here everyday.

We have this hope as an anchor for the soul, firm and secure. It enters the inner sanctuary behind the curtain, where Jesus, who went before us, has entered on our behalf.
Hebrews 6:19-20


Recovery
by Catherine Maurice
A parent, author, and editor of several books on autism and its treatments, Catherine Maurice responds to the letter of invitation for this special autism issue of Leadership Perspectives in Developmental Disabilities.
I have a doctorate in literary criticism, but it does not take an advanced degree to detect a certain level of skepticism in this letter of invitation. These questions seem rather biased against early intensive behavioral intervention (1) and the possibility of recovery from autism. Far from displaying any welcome or enthusiasm for 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 “recovery from autism” and the data supporting recoveries from autism are issues that are up for debate. The phrasing suggests 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 term “recovery” is “a useful term.”(3) Perhaps a more neutrally phrased question could have been: “How can we define recovery from autism, and how do we know that it can occur?”

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. Furthermore, and again under that present system of knowledge, 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 in helping children to learn 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, and teach them higher levels of communication, social behavior, and independence. Undermining the notion of recovery and then calling early intensive behavioral intervention a “recovery treatment procedure” is another way of dismissing behavioral intervention – “those behaviorists promise recovery to everyone, and we know that can’t happen, so don’t bother with that nonsense.”

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 model of prejudicial questions: “When did you stop beating your wife?” Those of us who are veterans of the autism wars know that this question will not go away, no matter what data are presented, re-presented, or analyzed. It’s an easy attack, and one that is 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 therefore “selected” for intensive treatment, apparently by people who have so little concern for ethics that they skew data any which way they can in order to claim success.
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.

If my own tone sounds impatient, I apologize. I used to be a lot nicer before I entered autism politics. 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 isto 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 enduring.(5) 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.

When my children were diagnosed, it did not take long to discern that the data supporting early behavioral intervention far surpassed any empirical support for generic, “eclectic,” intervention, special education classrooms, therapeutic nurseries or the myriad fads and miracle cures that succeed each other. That data has only increased today. Do we really want to consign autistic children to a lifetime of sorting bottle caps, when we know now that many can learn more than we ever expected them to learn, if we intervene early enough, and care deeply enough to bring them science- based treatment models? With the field of applied behavior analysis producing study after study showing the value of behaviorally based teaching methods for people with autism, how much more debate do we have to engage in, as generations of autistic children founder?

Many parents (7) have become all too aware that special education programs, therapeutic nurseries, play therapy and each successive media-hyped new “breakthrough” for autism have for decades promised appropriate care for our children, and have delivered virtually nothing. Our children do not need parent substitutes. They don’t need special education that does not educate. Pseudoscientific “evidence,” notwithstanding, they do not need huge doses of vitamins forced into them. They need data driven, research-backed programs specifically tailored to their needs, their learning pace, their strengths and weaknesses. Behavioral intervention does not promise universal recovery. It does promise, if delivered by qualified providers, a better chance that some real learning will take place, and maybe, just maybe, some children will recover.

How do I know some children will recover? Because in addition to the published data referenced in this paper, professionals and parents keep reporting and documenting more and more cases of children recovering, every year since I have been involved in this field. Because I live with two such children. My two youngest - a girl and a boy - were diagnosed with autism when they were about 2 years old. They were diagnosed by psychiatrists, psychologists, pediatric neurologists and speech language pathologists, four out of five of whom used the word “autistic” to describe them. (The fifth used the term “pervasive developmental disorder,” one of several useless euphemisms spawned by the ever-more inventive DSM IV-R). Both children received intensive ABA treatment for 2-3 years. By the age of five, both children were documented as normally functioning. (8) As other parents I know are doing today, I held onto every piece of paper documenting my children’s symptoms, their deterioration, treatment, re-evaluations, and eventually, their recovery. These pieces of paper were written by people who had no interest in creating sensational miracle stories, no interest in selling “their treatment,” their method, or their belief, to anyone.

After I published my book, chronicling all of this, I was hit not only by dismissal from the professional community, but in certain quarters, by outright mockery. OK. Fair enough. I understand that such dramatic improvement is a novel concept, especially for people whose entire careers are built around the notion that they know how to treat autism, and that autism is forever. I understand that if you have built a reputation around your expertise in autism, you are not going to be very receptive to the idea that maybe, just maybe, you may not know what the most effective treatments are, or how to deliver them. I decided, with some weariness, that I probably owed the public some further evidence that my children’s recovery was indeed lasting, and real. I asked three of the original diagnosticians (none of them behavior analysts, by the way), to write a follow up paper on my children. (9) To these clinicians and researchers, I provided videotapes, school reports, standardized test reports, and whatever else I could think of that was not just “mommy’s opinion.”

Still not good enough. From the University of California (10), to Chapel Hill, to the halls of Yale, various “experts” in autism continue to make public statements about my children, whom they have never met. Well, what would it take, I ask myself? Another video? Dinner at my home? Opening our family life more and more to a parade of skeptics whose interests are vested – meaning truly vested both economically and personally – in seeing “residual autism” wherever they want to see it?

I don’t think so. I think I have run out of patience with the fact that the merits of EIBI and the reality of recovery are still “hotly debated,” and that nothing I say, no evidence that I present or that other families or professionals can present, will ever, can ever convince those who do not want to be convinced.

It’s easy to attack ABA by attacking the notion of recovery. So let’s just clear that one up, and move on. Recovery exists, and it is real. Last year, my oldest son finished tenth grade, my daughter completed ninth grade, and my son completed seventh grade. All finished the year on the honor roll or high honor roll. (The need to state some facts supersedes the need to be discreet about one’s children’s academic performance). I’m sorry, but there is no way that I or my husband could possibly “program” these children to succeed in biology, chemistry, advanced placement history, English and American literature, French, physics, algebra, geometry, etc. We couldn’t possibly keep up with the homework, for one thing.

None of the children received special assistance or tutoring since they enrolled in regular school in kindergarten. If they had, would that have proved anything? Think about the number of kids labeled ADD, or “learning impaired,” who receive extra academic attention or tutoring for one reason or another. It’s getting a little tough to define “normal” these days.

So how can we define recovery from autism, if grades and school placement and academic success or failure is not a consistently reliable criterion? Perhaps one helpful concept in thinking about recovery would be the absence of the defining symptomology for autism, especially with respect to communicative abilities and social functioning.

Ah, but what about our children’s social functioning? Do they have friends? Yes, they have friends. But how many friends do they have? Well, let’s see. How many friends do you have? After a while, the questions become almost absurd. But do they relate to their friends? Can they “put themselves in others’ shoes?” Can they think and speak with any abstraction, or originality? My youngest was just elected class representative, my daughter wept with me on September 11th. I would invite some of the most arrogant authorities to my home, so that they could observe the conversations that my kids can have with their friends, except for one tiny problem. I suspect that if those psychologists and psychiatrists and special educators observed the normal teenage behavior that goes on in our house, from self-conscious embarrassment, to joking banter, to arguments about chores, to abstract musings on politics, the response would be the predictable “they were misdiagnosed.” Other parents of recovered children report, almost universally, the same reaction.

To me, this is not just a matter of defending my story. If it were, I would have thrown in the towel long ago. It’s a matter of watching my friends, mothers and fathers, weeping for their children, knowing that a powerful teaching technology exists, but unable to access it for their child, blocked at every turn by an entrenched and stonewalling establishment. It’s hearing yet another mother on the phone, telling me that her three year old is learning more and more, but she cannot get anyone in authority to help her find and pay for an adequate number of treatment hours to ensure that his learning continues. It’s knowing that only a handful of good behaviorally-based programs exist in this country, and that, if this academic and professional 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 dismiss EIBI, of course parents will be hard pressed to find quality intervention programs, and universities will not set up training programs to meet the need. The Federal government looks to academic and professional authorities to inform its decisions. If such authorities pooh-pooh the notion of recovery, and downplay the role of early intensive behavioral intervention, 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 “recovery treatment procedures.” The Association for Science in Autism Treatment, (11) www.autismonline.org, a group of autism professionals and parents whose children have been diagnosed with autism, is working on compiling and disseminating information on these and similar questions. We believe that 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 trained and qualified provider. We support the work of the Behavior Analyst Certification Board, and we are currently exploring ways of funding, researching and developing a professional training model for graduate students who wish to specialize in ABA and autism treatment. 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 for their children. We face an uphill battle, and we need all the help we can get.

I work with women and men whose children have not recovered, and I count them as my friends and colleagues. Listening to the struggles of my friends, knowing the longing of their hearts, I do pray that one day science will produce an easier, faster, quicker and more effective treatment than that promised through ABA. I hope that current research on neurobiology, immunology and genetics will lead us there. But meanwhile, those parents know, and I know, that there is a difference between being “open-minded” to promising new directions in autism treatment research, and continuing to buy into those myriad treatment options that have had decades to produce substantiating evidence, and have failed to do so. ABA can offer our children a lot. Let’s pull together to support it, while at the same time supporting quality research into the complicated causes of and potential cures for autism.

(1) When 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.

(2) Jacobson, 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]

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

(4) 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.

(5) For 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.

(6) Lovaas, 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.

(7) I speak with many parents, and have received hundred of letters and phone calls from parents over the years. But I do not speak for all parents; No parent speaks for all parents, just as no professional speaks for all professionals.

(8) Maurice, C. (1993) Let Me Hear Your Voice, A family’s triumph over autism. Knopf, New York.

(9) Perry, R., Cohen, I., & DeCarlo, R. (1995) op.cit.

(10) Last year, I sent Dr. Bryna Siegel, of the Langley Porter Psychiatric Institute at the University of California, a letter, asking her to comment on repeated parental reports that she has made disparaging comments about my children. My letter was offered to her as a private communication, an opportunity to address her concerns, and mine. Dr. Siegel did not respond to that letter. But personal attacks against my children or me are only part of what I see as a wider problem. What concerns me as well is the sustained attempt on the part of many such “experts” to discredit early intensive behavioral intervention for children with autism, even to the point of serving as expert witnesses for school districts who are fighting parental requests for such intervention. For years, I have been growing increasingly alarmed by the articles and books of such authorities as Shirley Cohen, Gary Mesibov, Ph.D, Stanley Greenspan, Ph.D., B.J. Freeman, Ph.D., Catherine Johnson, and many others. For years, I have been tracking such books and articles, and I have seen dismissive and inaccurate descriptions of early intensive behavioral intervention as well as insistent denials that recovery is possible. In many of these publications, ABA is still painted as child abuse, or little more than some superficial training in skills. Parents who choose ABA for their children are portrayed as delusional, blindly following the hope of recovery and willing to do anything to force children into compliant robotic behavior. Obviously such caricature can only render parental access to effective treatment ever more difficult.

(11) The Association for Science in Autism Treatment. 175 Great Neck Road, Suite 406, Great Neck, N.Y. 11021. Tel: 516 627-8943. Fax: 516 466-4484.

--------------------------------------------------------------------------------
Catherine Maurice, Ph.D. is the author of Let Me Hear Your Voice, a family’s triumph over autism (Knopf, 1993); the principal editor of Behavioral Intervention for autism, a manual for parents and professionals (PRO-ED, 1996); and principal editor of Making a Difference, Behavioral Intervention for Autism. (PRO-ED, 2001).

6 Comments:

Anonymous Anonymous said...

Many parents do not have the resources and ability to access services like Catherine Maurice did. Her children also had a fairly simple recovery within a couple of years. I respect the people who are still in the trenches with their children fighting everyday for appropriate services which apparently fell in her lap. This is not a woman I look up to.

10:02:00 AM  
Anonymous Anonymous said...

Give me a break. Maurice's children recovered. You're child apparently recovered rather quickly. How can people like you possibly know what it's like to have a child who does not recover? Your children can go on and thrive and do well in typical schools. The majority of parents who devote as much time and energy into ABA, OT, Speech, PT, etc. still don't get that lucky. (and trust me, you got lucky.)

11:22:00 AM  
Blogger Lacey Anne said...

I really don't think luck has anything to do with it. I think you are blessed and shame on those so caught up in their own circumstances that they cannot appreciate yours. They walk their own road, but only you walk yours. You know trials they do not and their understanding is limitted only to their experiences. What a pitiful shame that they cannot see past their own lives and be a bit understanding of yours. Susan, you are an amazing woman. Don't let anyone tell you otherwise. They are simply too wrapped up in their own issues to appreciate that they are not the only ones in the world who have problems and, yes, victories.

3:51:00 PM  
Anonymous Hasmig Tempesta said...

I can't believe the negative posts to your blog post. Just b/c ALL kids dont recover does not make your child's revovery any less important to you or to the rest of the world. To the person who posted that not everyone has the means to assist their kids the way Catherine M. did has missed the mark. My son was diagnosed at 22 months and we were told we had to wait almost 10 months for partial funding for his treatment...I said "no." Our friends are throwing a fundraiser in his name to raise money for his treatment and we would get a 2nd mortgage if we have to. I am not just a mother of an autistic child, I was an ABA therapist and saw a child revover...he had classic autism and recovered...he was/is not a robot...he is a sweet smart boy with many friends, a great imagination and beautiful emotions. Good for you and good for your daughter!

8:15:00 PM  
Blogger Trisha said...

I agree with Lacey, Susan. The fact that people can't be happy for you, in your own circumstances, is beyond belief!

Perhaps these people are filled with such resentment that your daughters have recovered, at least to the point of functioning normally in society, that they can't see the forest for the trees. They have no idea what you and Jimmy have gone through. They only see what they want to see.

I applaud you for all that you've done for your girls and shame on them for having the nerve to tell you that you don't know what it's like to be them. of course you don't! But isn't it enough that there is HOPE out there for such people? Perhaps one day their child will recover and they will be celebrating just like you!

9:57:00 PM  
Anonymous Kyra said...

You are BLESSED....not LUCKY. Blessed after and during a lot of hard work and research by you and your hubby. You two have given 200% to help your daughters and NOTHING has been laid in your laps. Sometimes....most of the time.... blessings come after much sacrifice and pain. AND that is exactly what your road has looked like.

How dare anyone say that you don't understand!!!!! You understand....maybe not EXACTLY what they are going through but you understand Autism....or at least as much or more about Autism as most people do. You share your story to praise God and to hopefully help others. If these bitter ladies can't see that then....I feel really sorry for them. They are so caught up in their grief right now that they just can't "see".

9:20:00 AM  

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