Conducted by David Celiberti, PhD, BCBA-D
Executive Director, Association for Science in Autism Treatment
I had the opportunity to interview Dr. Catherine Maurice, a founding member of ASAT and current member of our Professional Advisory Board. Dr. Maurice has been a long-term supporter and integral part of ASAT’s success. We are deeply grateful for her support and excited to share her thoughts with you.
David: Looking back at some of your work such as Let Me Hear Your Voice, Behavioral Intervention for Young Children with Autism, and Making a Difference: which do you think had the greatest impact?
Catherine: In terms of sales, there is no doubt that Let Me Hear Your Voice has had a wider readership. That book was published initially by Knopf in 1993, came out in paperback within a year, then was translated into several foreign languages and is still appearing in different countries today. Most recently I signed a contract for publication in China. The two manuals you mention, written in collaboration with professionals and parents, were published through a more specialized educational publishing house, and their readership has been smaller, although I was told that Behavioral Intervention was for a time Pro-Ed’s best-selling work. Other than sales and foreign rights and that type of data, however, it’s hard to evaluate impact: All books go out into the world, and they can be a best seller in their field for a while, then fade away. Others never reach any kind of blockbuster status but can still ripple outward, changing minds, hearts, and policies. I don’t know if it is up to me to evaluate what kind of impact my writing has had. I can talk about what I set out to do, but any assessment of my work is best left to time and others.
David: Fair enough. What did you set out to do?
Catherine: I guess I decided to write Let Me Hear Your Voice because there was so much that was wrong. In the late 1980’s diagnosis was a struggle, theories about causation were mired in nonsense, and there was little help available. Obtaining reliable, science-based information about treatment was a challenge, to put it mildly. The people who were supposed to be “advocates” for children with autism were often useless. I remember receiving a newsletter from the Autism Society of America, replete with advertisements for every snake oil lotion and potion out there at the time. There was absolutely no guidance about the scientific credibility, or lack thereof, of any of these treatments. The MDs and the PhDs I consulted at prestigious hospitals and universities, for their part, had no help to offer. For them, autism was a lifelong, intractable condition and the best they could offer was maybe a support group. And when I did find out about some emerging research out of UCLA, a pioneering study of children treated through ABA (Applied Behavior Analysis) authored by Ivar Lovaas, PhD, I was informed by several of these experts that ABA was dangerous and inhumane “dog training;” that it was “morally objectionable,” and that Dr. Lovaas’ work was not to be given any credence.
I wanted to talk about these difficulties and why they existed and maybe how we could do better in all these realms. I wanted to speak out about what I considered to be truth, as opposed to received opinions and clichéd thinking. As a mother, I knew I did not have any scientific expertise to offer, but I thought I could offer our lived experience as we made our way through these murky waters. Maybe that perspective could offer insights that could help others navigate their own journey with a child diagnosed with autism. I had no horse in the race regarding treatment, no vested interest in supporting ABA over any other treatment modality. My overriding urgency was to help my children learn how to talk, so that they could enjoy as independent and fulfilled a life as possible. Anything that could help unlock their potential for self-expression and self-direction was what was important to me, not taking sides in any professional or political dispute over causes or treatments for autism. But it was precisely because I saw how much my children were helped or not by various practices that I wanted to speak out about our experience.
I also wanted to show our mistakes, confusion, and consternation, and how we had to keep finding our own path toward truth. After trying this and trying that, and believing this and rejecting that, it became manifestly clear that ABA was the major catalyst in helping our children learn to communicate. It was not “dog training” nor child abuse. It was not a means of forcing our children into robotic compliance, but a way of helping them develop full capacity in language. Expressive, social, creative language was the goal of our intervention because language, we believed then and now, is the cornerstone of all learning and the means of structuring one’s own life, one’s own sense of self.
I wanted to write also as a witness to the early onset of autism, and how it begins to manifest itself in such subtle ways, so early. I knew that if I spoke about this, from the perspective of a layperson, recounting the minutiae of daily life with babies and toddlers, it could resonate with other parents more than academic studies published in obscure journals: Even though academic studies can contain truth, personal narratives written in a mainstream medium can reach far more people and can come across more vividly than such studies can. (Sometimes this is a good thing; sometimes it is not). I hoped that by recounting the long-drawn-out process of fear, uncertainty, visits to specialists, and finally, multiple diagnoses all converging around the words “autism” and “PDD” (pervasive developmental disorder), I could possibly help other parents discover the truth of their own situations more quickly. Months can go by with people assuring you that all is fine, she’ll talk when she’s ready, he’s OK, don’t be such a worrywart, Einstein didn’t talk until he was four years old, etc. I wanted to affirm for parents that if they have concerns, it’s OK to keep asking questions and seeking reliable sources of information about early childhood development. As we know now, early intervention can be key to helping a child maximize his or her potential for learning and independence.
I wanted to talk about some theories of causation that I found particularly offensive. At the time our children were diagnosed, there was no longer any direct talk about “refrigerator mothers” causing autism, but there was, and there remains to this day, vestiges of this thinking: What thinking? Your child was somehow emotionally wounded as a baby, and withdrew into autism. Through proper love and emotional healing, he will emerge, only when he feels safe and cherished and accepted for himself. This has been called the Villain Victim Victor triad1: The villain parent communicated “non-acceptance” to the child (the victim) and only through the intervention of a savior therapist (the victor) who understands the child’s true needs will he emerge and trust again. This type of thinking still today undergirds some popular approaches to autism and will not go away, I fear, until science continues its march toward true understanding of the genesis of autism. When my daughter was in middle school, I discovered that Dibs in Search of Self was on her required reading list: This in my opinion is a true classic of the Villain Victim Victor genre: the mother is pilloried from beginning to end as a cold rejecting person who created catastrophic withdrawal in her child. The therapist, Axline, spends many pages painting herself as the one who really truly cares for this poor little boy, truly understands him. (What narcissism reigns in some of these self-anointed healers!) Books such as these cannot hurt my family or me any longer, but I worry about other families. Why? Because the mentality underlying the Dibs book is not the sole example of this kind of approach. I can think of at least a couple of other popular approaches still going strong today that propagate this notion that only “true acceptance” of the child will allow him to emerge and start chatting away once he feels safe and loved. For a fee, of course, they can teach you too how to love your child. So, I would say outrage was one of the catalysts when I sat down to write that first book.
David: Outrage over theories of causation, and other problems as well?
Catherine: Theories of causation yes, but also all the craziness peddled as treatment. I wanted to talk, in Let Me Hear Your Voice and then later in the two manuals, about the scores (now hundreds) of treatments offered by the media, by parents, by people with made up degrees in made up fields, by people operating outside their area of expertise, by celebrities with conspiracy theories about Big Pharma, Big Government, by self-important saviors, rogue doctors, and unscrupulous profit mongers. When we published the two manuals (“we” being the professionals and parents who worked with me), we offered some chapters on the state of the evidence regarding many of these treatments. Those chapters were written by respected researchers highly trained to evaluate the quality of experimental design and to assess the evidence behind claims of treatment effectiveness. We had two goals: elucidate for parents and service providers the hard evidence to date for treatment x, y and z, and offer general guidelines for parents themselves to evaluate the quality of the evidence behind any treatment claim. We were not interested in telling people what to do; we did want to offer some tools to allow people to make their own, informed decisions. Unfortunately, the “quality of the evidence” was conspicuously lacking for the vast majority of these treatment claims. When the books were published, I received angry letters, sometimes accompanied by threats of retaliation by “many many people.” The authors of these letters were offended that we dared say anything implying a lack of empirical support for chelation therapy, megavitamins, weighted vests, holding therapy, facilitated communication, auditory integration training, etc. Autism intervention has for decades been characterized by this endless parade of dubious treatment fads, and I don’t think this will end soon.
David: There were some serious critiques of the type of advice that parents were offered and are still being offered when they receive a diagnosis of autism. Did you see your books as fulfilling some other function?
Catherine: In Let Me Hear Your Voice especially, I wanted to talk about the reality of hope: Hope for a child with this diagnosis to eventually achieve self-sufficiency, self-expression. This can happen and has happened. There is no bio-medical cure for autism and maybe there never will be. But recovery – meaning the attainment of full communicative, cognitive, and social functioning – is no longer outside the realm of possibility for a child diagnosed with autism. At the same time, I wanted to acknowledge there is a continuum of progress – not all children were going to achieve this level of independence, at least not under our present state of knowledge. ABA may be the most effective intervention we have now, but ABA does not pretend any knowledge about the underlying causes of autism, and it does not promise recovery for every child. It offers the tools and methods to help every child learn. Some children will respond maximally to ABA; some will make much slower progress.
To elucidate the reality of differing responses, I invited other parents to contribute their own stories. In Let Me Hear Your Voice, in Behavioral Intervention for Young Children with Autism, and in Making a Difference, I invited testimonials from parents who I believe were every bit as involved as my husband and I were, every bit as committed, who even in some cases employed the same therapists we did, and yet, their children did not make the same degree of progress with the same rapidity as ours. The bottom line is that we can only have a certain amount of control over the quality of the intervention; we cannot predict how each child will respond.
David: So you understand why parents would be open to anything that might give them hope?
Catherine: Of course I understand that. It’s human nature. If a given treatment is only going to go so far and your child’s future is at stake, most parents will be open to trying other avenues. But it’s also a reality that hope can be exploited. The fact that ABA is not a cure-all is no reason to simply shrug and yawn at the fakery peddled to desperate people. Bogus treatments are not harmless. They bleed time from children and money from families and in some cases result in outright harm. Witness the number of false accusations levied against parents throughout the “facilitated communication” craze, the harm that is still resulting today from the frenzied anti-vaccine movement, the rampant experimentation on children used as guinea pigs for every new “breakthrough” peddled on the internet. Every dollar, private or public, that is spent on pursuing and promoting quackery is money diverted from the pursuit of real answers, real hope. Although it is fashionable to say “I believe in an eclectic approach,” the fact is that “belief” is not a substitute for objective assessment, and the fact is that each component of that eclectic approach should be subject to the same scrutiny for effectiveness and safety as anything else to which our children are subjected. We need to balance open-mindedness with critical thinking and a healthy dose of skepticism when it comes to the latest cures for autism. And the media needs to do a better job of exercising a similar level of caution, rather than stoking these frenzies, propagating pseudoscience, and accepting uncritically every new miracle story in autism treatment.
David: Overall, do you think you were successful in mitigating some of these problems?
Catherine: How effective was my work in elucidating these issues, or creating change where needed? I don’t know. Who can judge that? I try not to think too much about my personal impact, because that way you can get caught up in the ego wars that rage in the autism world, and I think we all have to focus on something other than ego if we are going to make any progress together. I felt my job was to testify, and hope for the best. In some sense, I think things are better, whether because of my work or the work of others it does not matter. On the plus side, diagnosis seems a bit easier today; ABA is no longer excoriated quite as widely as in the past; more children are receiving the help they need early on. On the other hand, quality programs are still hard to get into, insurance often doesn’t cover all the costs; adults with autism are often left with few resources when they turn 21, we still don’t understand what autism is and how we can best help the children and adults most affected, and the “crazy therapies” continue, on and on and on. There is still so much work to be done, for generations to come, no doubt.
David: What are your hopes for the future of autism intervention?
Catherine: Well, I hope to see an increased awareness on the part of the public of what “evidence-based” really means, and I hope to see publicly funded treatment programs tied to that evidence. And, precisely because ABA is not a panacea, I hope that research continues into any other avenue that seems promising. I am glad that organizations such as Autism Speaks have the means to raise significant funds so that high quality research can continue into the possible causes and potential treatments for those affected. It will take a lot of hard work, but I have faith that the scientific process will yield more understanding of, and more help for people with autism and their families. One day we will have a wider variety of treatments that are better able to help even those most severely affected.
David: Some people today are opposed to the words “treatment” and especially “cure” when talking about autism. What are your thoughts on the “neurodiversity” movement?
Catherine: Oh Lord, David. Just when I thought I could retire into the sunset and peacefully learn how to knit or something, here you are asking me questions that inspire white-hot rhetoric across the blogosphere. Thank you, my friend!
There seems to be a new book on neurodiversity every week now. I’ve been wondering about these terms: What does “neurodiversity” mean? That your brain is different from mine? Of course it is. We are all neurologically diverse. Every person is unique. Humans display a huge variety of personality types, ways of acting, ways of being, ways of thinking. To call autism a manifestation simply of “neurodiversity” does not capture the reality of what autism can do to a child and to his life prospects.
Maybe it’s time as well to question the definition of the word “autism” with respect to this movement. The criteria for an autism diagnosis seem to have expanded over the course of the last two decades, so that now, there are college graduates, holding high-level jobs, some of them married, who say they are “on the spectrum.” Perhaps we are moving toward a future where the word “autism” is becoming too broad to be meaningful. Steven Hyman, former head of the National Institute of Mental Health (NIMH) has offered the view that autism “may turn out to be a family of brain-related problems that won’t respond to the same treatments.”
In any case, however it is defined, some within neurodiversity circles take exception even to the word “problem” let alone “disorder,” or any other such negative term. It’s not a problem, goes one argument: it’s another way of being, and those searching for a treatment or cure are rejecting children for who they are, and trying to force them into some draconian norm, where the majority wish to suppress, discriminate against – even “harm” – those they deem different. They write lengthy tomes on the Internet expressing outrage over this oppression.
One essay considered seminal in this movement scolds parents for even daring to grieve over this diagnosis, mocking them for having to give up their “fantasized normal child.” Rather than thinking “I wish my child did not exist,” lectures this author, what you [parents] should learn to do is “speak our language,” accept us for who we are. Mind you, this tract is written in English, so it is not clear what this other language may be. What is clear is that this person has mastered a means of communication that certainly allows him this soapbox. If only all kids with autism could have the same opportunity. And what is “our” language anyway? Who is this “our” and this “we” the author insists on using every other sentence? It’s a bit arrogant that anyone would presume to speak for all people with autism, and presume to lecture parents on how they should or should not respond to a diagnosis that has been known to wreak havoc on a child’s development.
I can’t speak for all parents, of course, but in my 25 plus years in this field, I have noticed that parents who seek treatment do so for many reasons, including self-injurious or aggressive behaviors, but primary among those reasons is this: they want their child to have communicative language, the bedrock of human learning; Language, which gives a child the ability to speak her own thoughts, lead her own life, become who she wants to be; Language, which eventually frees a child to be his own boss.
David: Why would anyone be against that?
Catherine: Well, clearly the neurodiversity folks already have language, so this doesn’t appear to be their concern. Their focus does not seem to be on the reality of how autism actually impacts so many children and adults, but instead on a conviction that they are being discriminated against – because they are autistic. The mantra that repeatedly appears is that the language of “disorder” or “disability” is insulting to people who are fine with who they are: it is wrong to even speak in those terms, let alone lobby for a cure for a condition that some have even taken to calling a “gift.” Another oft-repeated argument is that people like Einstein or Beethoven or Steve Jobs were probably “on the spectrum,” and it would have been morally wrong to try to make those geniuses fit into some kind of norm. And they too are on the spectrum, and they are not going to be forced to change.
I find this argument puzzling: Who is trying to change them?
Moreover, these Einstein/Beethoven analogies ring false. It’s getting to the point where anyone can claim – retroactively – that any genius, any inventor, any artist was “probably on the spectrum” – and the implication is that people who are focused on curing or treating autism would have wanted to persecute these exceptional people. This argument is specious. No parent I have ever met is wrapped up in any thought of changing his or her genius child to render him less unique or because they want to squash her brilliant difference. Parents who hear this diagnosis are aware of the prognosis for autism as it used to be understood (not “Asperger’s” not “genius” not “artist”) and are aware of what autism can do to a child. They are usually consumed with more urgent priorities like:
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- Will I ever be able to have a conversation with my son, my daughter?
- How will he fare in school?
- Will he ever be able to hold down a job? Live independently?
- Will she ever have a friend?
- Will he have a happy life?
- What will happen to him after I die? Who will take care of her?
For these parents, treatment does not mean “getting rid of the child I have” or ceasing to love that child. It means finding a way to give that child the tools and skills to free him, as much as possible to live his own life and make his own choices. It is understandable in a way I suppose that some of the neurodiversity arguments denigrate treatment. Those who are most outspoken in their opposition to treatment or cure clearly don’t need it – at least not for autism. Other people do. It seems to me that this focus on victimization certainly brings a lot of media attention, but at what cost to other young lives – young lives with huge, serious challenges? What concerns me in this movement is not that anyone would want to advocate for more acceptance, love, concern and care for all people with autism, wherever they are on the spectrum. What concern me are three things:
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- The threat to children, wherever and however their access to effective treatment is undermined or attacked.
- The resurgence of hostility against parents.
- The attacks against professionals who have dedicated their lives to helping families.
But do all neurodiversity people rail against treatment? Some of them protest “we do not!” but if not, they need to speak up more, as they are being drowned out by more extreme views. The rhetoric used especially against anyone who chooses or recommends an ABA-based intervention for a child is increasing, and it’s troubling. In addition to the old clichés about dog training and harming children, many of the neurodiversity advocates describe parents who choose ABA as doing so only because of their own selfish needs, not those of the child. I have read blogs implying that parents who choose such treatment do so only because they are embarrassed by their a-typical child. These bad parents will do anything to satisfy their narcissistic need to have “a perfect child.” I have read that anyone who chooses ABA treatment is persecuting a cohort of the human race. I have seen tracts painting behavioral therapists as borderline criminals and parents as child abusers. Somebody is always deciding that parents are the enemy: first they were vilified for having “caused” autism. Now they’re vilified for wanting to treat it.
David: Can you offer specific examples of this kind of rhetoric?
Catherine: Yes, I suppose at some point I have to cite some actual people, or it sounds like I’m making stuff up. Michelle Dawson self-describes as “an autistic adult” who was diagnosed in her thirties. According to her own public statements, she is someone who is “intelligent;” who “speaks and communicates clearly” and whose “employment record is exemplary.” Like others in this movement, she rejects the language of disability or disorder as descriptors of autism, asserting instead that any problems “autistics”3 may encounter are due to society’s lack of respect for autistics’ unique abilities and society’s lack of accommodation for their needs. She has published astonishing certitudes about how autistic brains function, even in one tract describing the capacities and abilities of “all autistics.”4 She equates treatment to the persecution of other groups who were misunderstood, oppressed and harassed throughout history, and over the past decade she has spent thousands of words publicly and personally critiquing parents and professionals in what she calls the “autism ABA industry:”
“…Autism-ABA adherents include therapists, educators and instructors, parents, grandparents, friends-of-the-family; funding bodies, autism societies, professional and pressure groups; professors, lawyers, judges and journalists; politicians, bureaucrats…All have failed to notice that they themselves are behaving unethically.”5
Her assertions about the unethical behavior of all these people go on and on, page after page, naming organizations and individuals, building her theme of treatment as persecution, as dehumanization, as harm. “Behaviorists have as their goal extinguishing autistic behaviors and therefore autistic people”6 is a typical statement.
In 2004 Ms. Dawson intervened in a Canadian Supreme Court case where parents were seeking government funding for treatment. Her affidavit before the court stated that people with autism are smart, communicative, capable people, just like her, not defective the way the doomsayers always portray. Treating them is tantamount to outmoded and discredited attempts to “treat” sexual orientation.7 Parents who seek ABA-based treatment for their children are “denying [their] humanity.”8
Fifty years ago, Bruno Bettelheim penned some comments about mothers and fathers of children with autism. Among his many pronouncements, taken as gospel at the time, was this: The precipitating factor in infantile autism is the parent’s wish that his child did not exist. We seem to be entering a new phase of parent-bashing, decades after Bettelheim’s brutal reign supposedly ended: an age where neurodiversity champions accuse parents of “wanting to extinguish their autistic child,” “wishing their child did not exist,” “harming them,” and “denying their humanity.”
Ultimately the court decided against the parents, whether influenced by Dawson’s affidavit or not I cannot say.
Do any of the neurodiversity activists resemble, can they speak for the little boy I saw just today? He is about 6 years old, completely non-verbal, darting constantly hither and yon, no interaction whatsoever with anyone, completely dependent on his parents, probably for the rest of his life unless someone, somehow, can get him some help. I watched as his parents followed him from room to room, never relaxing their vigilance, so patient and loving and just dealing with the reality of their child’s severe challenges. Clearly, this little one is not going to function or learn in a typical kindergarten or first grade class anytime soon. Clearly, it’s going to take some intensive intervention to help him learn some kind of communicative language. Who would dare attack his mother and father for doing whatever they can to lessen the effects of autism in their son?
David: So you fear that the neurodiversity movement is fostering a resurgence of anti-ABA sentiment?
Catherine: I believe that the neurodiversity premise holds the seeds of a potentially important perspective, and I am waiting for a rational and cogent elucidation of that perspective. The idea that some people on the spectrum might not need treatment and might be offended at the notion of treatment or cure is not per se outrageous or illogical. But I am troubled that from the outset the manifestoes of this movement tend to minimize the devastating impact that autism has had on the majority of children diagnosed. And I’m troubled that so many of the arguments have been muddied by an anti-treatment, specifically anti-ABA sentiment which is something that can harm – and has harmed – other people’s children and the parents and professionals who care for them. And I don’t think this theme is confined to just a few extremist voices out there. The old shibboleths and stereotypes about ABA are resurfacing now in mainstream books and publications.
The book NeuroTribes by Steve Silberman offers an interesting example to which I can speak directly, since it happens to concern the ABA-based approach with which I am most familiar, the one I describe in Let Me Hear Your Voice. I don’t mean his book is focused on me – it’s a wide-ranging discussion of the history of autism as seen through different perspectives. But he touches on my book and the approach we used when our daughter was diagnosed. As I read his comments, I was not particularly rattled by his flippant mockery of my faith (Catherine fell to her knees!), or by his snarky description of my husband and me: “They threw themselves into the role of being ABA co-therapists with the fervor of religious converts.” I’m used to all that. To me it has become a hackneyed cliché to see parents who endorse ABA depicted as gullible, unquestioning cult followers. It would be futile as well to even comment on his insinuation (based on his professional evaluation of children he never met?) that our daughter may have regained language through simple “maturation” or on his obvious scorn for the whole notion of recovery.
What is relevant to this discussion is the way he describes the complex and constantly evolving program that we organized for our children in simplistic, demeaning terms: Basically, as a quest to train a child through punishment and food bribery. Punishment? We said “no” to certain kinds of behaviors, or redirected certain behaviors, like self–injury, to take but one example. This is what all parents need to do unless they think that toddlers and children can raise themselves and navigate the world without any interference, guardrails or guidance. Food bribery? That’s a highly reductionist cliché that has been around forever but which fits his preconceived notions about ABA I guess. He reduces our entire approach to a snapshot of Anne Marie sitting in a chair being coaxed to complete tasks through the use of m&m’s, juice, or food. Later, in discussing another family’s approach in comparison to ours, he hones his point:
“Instead of aiming to extinguish Leo’s autistic behaviors, as the Maurices’ therapist had done, Fiona focused on teaching him skills that would enable him to care for himself and express his desires and preferences more effectively.”9
These and other passages in his book are just strange to me. I do not recognize our program, our children, or our compassionate, caring therapists in his dismissive remarks. In Let Me Hear Your Voice, I describe in lengthy detail not only the “teaching of skills” but also the step-by-step building of verbal communication, social rapport, and joyful interactions. There are multiple descriptions of praise, play, incidental teaching, and generalization across different settings – home, nursery school, the park, the grocery store, the classroom, etc. Why does Mr. Silberman ignore the many passages in LMHYV, illustrating how parents, therapists and teachers worked to help both children regain more effective communicative language, to say nothing of self-care and “expressing preferences?” And by the way, why would “Fiona” even need to teach “more effective communication” if she and Leo’s parents were all fine with his “autistic behaviors?” There is a built in contradiction which he doesn’t even recognize as he tries to paint one approach as evil and the other as kind. Essentially, what Leo’s parents and teachers were tying to do sounds pretty much exactly what parents who choose ABA are trying to do: teach their children to care for themselves and express their desires and preferences more effectively. This blatant attempt to paint our kids as poor little trained puppets, with mean people trying to squelch their authentic nature, does not pass the reality test. Does he really believe that our children could progress through elementary school, middle school, high school, college and now independent life without the ability to “express their desires and preferences?” Perhaps it will disappoint him to learn that they are out in the world, gainfully employed, contributing to society, with all kinds of opinions of their own, and they are grateful to those early ABA therapists and speech language pathologists and all those who helped them find their own voice.
Is this author being deliberately dishonest, or is he simply so wrapped up in his anti-ABA animus that he feels compelled to paint this false narrative? Who knows? But it seems obvious that he really truly wants the reader to believe that our approach consisted solely of discrete trials in a chair, m&m’s, punishment, etc. It makes me wonder if he actually read the book I wrote, or just cherry-picked his way through, looking for any possible bits and pieces that could reinforce a negative caricature of what ABA is and how it works.
Why? Why present such a skewed view? I don’t know why anyone thinks the way they do or holds the opinions he or she holds, but as I read through NeuroTribes I was struck by two themes – themes that echo throughout the neurodiversity movement: the emphasis on autism as a “strange gift,” a different but wonderful kind of intelligence that has been misunderstood and unappreciated throughout history, and by the frequent descriptions of how children in decades past were abused in the name of treatment. As he delves into the history of autism, and the stories of the major players who shaped public perceptions and responses to autism, he discusses a parade of horrific interventions championed by this expert or that expert: electroshock therapy, hitting children, screaming at them, depriving them of food, trying to force “sissy boys” to change their sexual orientation, separating children from their “toxic” mothers, locking them in closets, etc. In reading through all this, I thought “Who would not find such behavior ethically and morally wrong, repugnant?” No parent or professional that I have ever met endorses the primitive and cruel experiments from 50, 60, 70 years ago that are described here. With respect to ABA in particular, it bears repeating that this approach is not about any one man or one method and never has been. Over the course of the past fifty years, ABA has become a field of experimental and applied research concerning human learning – a field to which hundreds of minds have contributed and a field that has steadily evolved in its understanding of how to maximize – with kindness and concern – each child’s potential. It’s not a way of destroying a child’s individuality; it’s a way to help a child have more control over his own choices. I wish that parents scared off by terrible stories about ABA could witness the power of a son’s first words, a daughter’s joyful smiles under the care of patient loving therapists such as I have known over the years.
It was telling to me also that Silberman salutes and admires, in his final chapter, the important work being done by one Michelle Dawson. Perhaps those Canadian parents who were denied critically important services for their kids might not share quite the same level of admiration. But as we have to re-live over and over again, parents are considered the enemy, and will always be the enemy in the fevered ideology of some of these autism activists, who claim to speak for all people with autism; who pretend to love our children more than their parents do.
David: Are you familiar with other perspectives that should be considered by those seeking a different take on this matter?
Catherine: SIAT readers may wish to read the perspective of Jonathan Mitchell, a man diagnosed with autism as a child who struggles with complex challenges today and who offers his own remarks on the neurodiversity movement. No one person speaks for all people with autism, just as no parent speaks for all parents, but I think his voice should be heard. He asks: Are the people who espouse this philosophy typical of autistic people in general? Do they represent the best interests of the majority of people diagnosed with this condition? His answer is no, and he explains why:
I am a diagnosed autistic, nonverbal, feces smearing at age 3, 8-year veteran of special education yet I do not share this view. I long for a cure for autism though a cure at age 52 is not the same as at age 3…
…My problems are many. I have been fired from multiple jobs and had to retire from paid work at 51 (I am 52 now). I have never had a girlfriend
I also have problems applying myself and staying on task which has made it difficult for me to do many things I wanted to do like learn computer programming… What do these things have to do with societal accommodations?
The internet has given a medium in which a small vocal minority can espouse their opinions and make it look like they are a much bigger group than they are. Most persons with an autism spectrum disorder have never had a web page or have expressed their opinions in the comments section of someone’s blog and never will.10
But tolerance and diversity of opinion don’t work both ways, I guess. When I researched Jonathan Mitchell, I found that he has become a target of the neurodiversity community: “The man is a threat… he is a hater…. he hates himself” rant the bloggers – and they do not spare his 86-year-old mother: She is the one who turned him into “a bitter hater.” Why? Because she tried to find treatment for him when he was young.
He still gets bullied, he says—but now it’s by members of the neurodiversity movement. When not blaming his mother for his behavior, some have written mean-spirited songs about him.
“They’ve called me turdball and buttwipe. One girl said I was like a Jew that sympathized with Nazis, and I would gladly jump into [a] crematorium.”11
So, a lonely man who wants to talk about his struggles honestly, along with his mother, has somehow become the target of Internet hate.
Who speaks for people with autism? Claims to speak for all members of any constituency – all women, men, gays, Blacks, Hispanics, people with schizophrenia, people with autism – always seem to be the mark of a bullying movement that tolerates no disagreement. According to the Centers for Disease Control and Prevention, “nearly all children (94%) with ASD [Autism Spectrum Disorder] have special health care needs, defined as requiring health or related services beyond those required by children generally.”12 Maybe the neurodiversity people could recognize this fact and stop attacking families and professionals who are trying to provide those services, stop attacking people who find their own voice, as Jonathan has found his, and stop attacking parents of children with no voice, as a friend remarked to me recently. Her son is 25 years old, and has no language, no voice of his own. His advocates are the people who love him most, his mother and father.
But the rhetoric against parents who choose treatment – especially ABA treatment – continues to grow and grow with every new bestseller on the Neurodiversity bandwagon. Some journalists – thank goodness – are taking notice, finally: “Stop Whitewashing Autism” is the title of an article in Psychology Today, in response to the Silberman book. NeuroTribes calls autism a “gift” but parents paint a much different picture,” writes Amy S. F. Lutz. To illustrate her point, she includes testimonials parents allowed her to share: Here’s one of many:
You know I love my little girl more than anything but I hate autism so much I hate that nothing comes natural it all has to be taught I hate the meltdowns and lashing out I hate the self injury behaviors even more! I hate that even with meds we still have nights where we are up all night I hate the isolation and not having a normal life just simple things we can’t do. I hate that she can’t speak or even understand me! I hate that she won’t eat and lives off Pediasure! [sic] What I really want for her more than anything is happiness to be able to take her place without all the screaming even if she is in a damn stroller happy flapping away I don’t care as long as she is happy!13
And how do the NeuroTribes fans react to this mother? Again, just one sample:
You don’t deserve your child if that is what you think and this kind of talk honestly is hugely triggering. This is the kind of talk that paaaarents who commit filicide say to justify murdering their children! You should be ashamed of yourself!14
This person keeps posting and posting on her theme of evil parents, each time spelling it “paaaarents,” who knows why. To mock, I guess.
Does this movement have spokespeople who do not attack ABA professionals who are trying to help kids? Who do not accuse parents of wanting to “extinguish” their children who have this diagnosis? Who do not rip into parents or people with autism who want to talk about their struggles honestly? After some searching, I found someone who offers a more temperate view than the bulk of what I had to wade through to comment on this question: A supporter of the movement, Nick Dubin, PsyD, recognizes that autism can have “some disabling consequences” and counsels more understanding on all sides:
If high functioning autistics would take the time to truly empathize with the struggles faced by parents of severely challenged children on the spectrum, and be supportive of them finding treatments to alleviate their children’s physical and emotional suffering, the resentment felt by opponents of the neurodiversity movement might just begin to subside. And if the parents of more severely challenged children with autism could view autism as the diverse spectrum it is – a continuum with vast differences even on the higher-functioning, Asperger’s end – one would hope the resentment Aspies feel would also subside.15
It’s nice that he acknowledges the existence of severely challenged children, but I have a question: Which parents do not recognize that autism is a spectrum? Parents are told it is a spectrum from the first moment they enter the world of diagnosis, and are reminded in every single documentary or article on autism that it is a spectrum. It’s called ASD, for heaven’s sake, which stands for autism spectrum disorder. And yet, that does not explain why someone on the more verbal end of the spectrum would presume to lecture others on the “unethicality” of treatment, presume to intervene against parents in their quest for justice for their own children. And which parents are trying to cure or change or impose treatment on those legions of “higher functioning” people anyway?
David: I appreciate how much time you have taken looking so carefully and compassionately on these myriad views. How do you synthesize all this?
Catherine: After reflecting long and hard on this question, and reading though so many impassioned opinions, here’s my view, at least for now: I can understand why someone on the less severe end of the spectrum would have objections to the word “cure” and would want to lobby for acceptance and understanding of who he or she is, autism and all. Setting aside whether you think a cure is a good thing or a bad thing, it is clear that people with autism have different perspectives on this question. Some like Jonathan feel that autism has robbed them of some of life’s happiness. Others feel that autism is part of who they are, and they don’t want to be seen or treated as defective people. Others find support and comfort within a movement that brings them a sense of community and belonging. Others may have been diagnosed when little, received intensive intervention, and recovered to the point where they no longer meet any diagnostic criteria for autism– and they too are happy with who they are and with the opportunities opened up to them. It is important to listen to rational views on all sides of this issue. In my life, there is a person I love who probably meets the diagnostic criteria for Asperger’s syndrome even though he has never received that label. I believe this highly intelligent young man with his very focused interests could benefit from a peer group who would open their arms to him in loving acceptance of who he is, whatever his quirks or differences. He has no friends, and his mother has confided to me that he feels very lonely. Perhaps the neurodiversity movement could eventually help someone like him, if for no other reason than to let him know that he is not alone in the world. But this young man has language, he graduated from college, he has prospects for employment and independence. His needs are not the needs of all people with autism. Maybe, just maybe, a multiplicity of viewpoints can co-exist in harmony if all sides acknowledge the fact that some people need more intensive intervention and treatment than others, and parents who choose such intervention for their minor children have a right to do so, just as they have a right to educate their children and prepare them for life. Yes, we need to see every human being as unique, worthy of respect and love, whatever the differences are. But the reality is that autism can create challenges, sometimes very severe, and no level of accommodations or goodwill is going to mitigate those challenges unless we find ways of helping those who need help. It’s not just a matter being brilliant but geeky, or having a special but wonderful form of intelligence. Autism is something that can harm a person’s ability to function and find connection in the world. And that’s not because the world hates people with autism, refuses to accommodate their differences or wants to get rid of them.
It’s because to build a relationship, hold a job or live your own life independently you need a certain level of functional language, self-regulation, cognitive maturity, and social skills. The neurodiversity movement can help build support for all people with autism – but not by attacking professionals who have spent their lives trying to help people achieve their fullest potential, and not by reviling parents who are exercising their right and responsibility to help their child achieve these milestones.
Thank you kindly for your honest and heartfelt thoughts on these topics. From the outset, your written words have opened not only doors, but hearts and minds as well.
Footnotes:
(1) A term coined first I believe by Lorna Wing.
(2) Quoted in “The Autism Rights Movement.” Andrew Solomon. May 25, 2008. New York Magazine.
(3) The term “autistics” is the term Ms Dawson uses in her own writings. Many in the neurodiversity movement reject the term “person with autism.”
(4) Dawson, Michelle. 2004. The Many Varieties of Being Written Off. Retrieved from https://www.sentex.net/~nexus23/naa_wro.html
(5) Dawson, Michelle. 2004. The Misbehaviour of Behaviourists. Retrieved from www.sentex.net/~nexus23/naa_aba.html
(6) Ibid
(7) An Autistic at the Supreme Court. http://www.sentex.net/~nexus23/naa_sup.html#1b
(8) Ibid
(9) Silberman, Steve. 2015. NeuroTribes: The Legacy of Autism and the Future of Neurodiversity. Penguin Publishing Group.
(10) Mitchell, Jonathan. 2007. Retrieved from www.jonathans-stories.com/journal/index.html
(11) Hayasaki, Erika. Feb 18, 2015. The Debate Over an Autism Cure Turns Hostile. Newsweek.
(12) Pringle, B.A et al: 2012. Diagnostic History and treatment of school-aged children with autism spectrum disorder and special health care needs. NCHS data brief, no 97.
(13) Lutz, Amy S.F. Sept 28 2015. “Please Stop Whitewashing Autism.” Psychology Today.
(14) Online commentary: Sept 28 2015. “Please Stop Whitewashing Autism.” Psychology Today website.
(15) Dubin, Nick. 2011. “Neurodiversity. A Balanced Opinion.” Autism Asperger’s Digest online article.
Citation for this article:
Celiberti, D. (2015). An interview with Catherine Maurice, PhD, parent, author, and founding board member of the Association for Science in Autism Treatment Science in Autism Treatment, 12(4), 3-17.
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