ASAT Formed to meet Critical Needs
The Association for Science in Autism Treatment (ASAT) was formed by parents and professionals dedicated to ensuring that children and adults with autism lead lives filled with dignity, purpose, peace and independence. It is probably safe to assume that most parents and professionals who care about people with autism support this goal. But difficulties —even conflicts—may arise when people of good intentions differ with each other over the means of achieving goals they share. Currently, the field of autism is marked by a high degree of such conflict. Rather than ignore it, it may be a good idea to spell out clearly what ASAT is about so that others have the opportunity to support our mission based upon a clear understanding of that mission. We stand for science in autism treatment.
Two Historical Trends
To understand why ASAT has chosen such a focus, a brief description of the historical context in which we are launching our cause is in order. That history reveals two dominant trends:
- A troubling parade of ineffective treatment models, miracle cures and faddish “breakthroughs”. Often these are sensationalized by the media, fueled by the anxious love of mothers and fathers, and adopted readily by service providers, in spite of the absence of any evidence of effectiveness. The most persistent of these ineffective treatments are those that are based upon outdated psychodynamic theories, wherein autism is seen as an emotional wound. In the past, this putative emotional fragility was treated largely through psychoanalysis; today it is addressed through play therapy. This model continues to be offered by those who see their role as understanding and reassuring a frightened child.
- The tendency of many in the professional community to ignore or even denigrate treatments that do have good, supportive data. Indeed, the very notion of data, outcome measures or objective validation simply does not figure in much of the published literature on autism intervention. Rather, the norm has been for many authorities to posit a speculative cause for autism, and propose an equally speculative remediation of the condition, based largely upon personal belief, or “clinical intuition.”
Looking Back
What gave rise to these trends? Probably a multitude of factors, too complex to analyze at any length here. However, we can at least identify some of the major formative influences on treatment politics.
- From the moment autism was identified in the 1940s, erroneous assumptions about its etiology have flourished. Children with autism are often beautiful, with no obvious physical impairment or distinguishing features. This physical normalcy is but one of the factors providing a fallow ground for the idea of autism as an emotional wound.
- Universities and medical schools provide little training in how to evaluate the effectiveness of proposed autism treatments; hence, there is a troubling scientific illiteracy on the part of the people from whom we most often seek such guidance. In fact, until recently, medical attention was focused largely on endlessly redefining the symptoms of autism, rather than on any effective treatment.
- In the absence of accurate, objective information about effective autism interventions and outcome statistics, our educational system has failed to meet the profoundly complicated learning needs of our children. Many educators have low expectations for children with autism, in part because educators are seldom trained to overcome autistic behaviors that interfere with learning behaviors, which may include crying, screaming, self injury and aggression. Consequently, learning does not take place.
- In the culture at large, there are many negative assumptions about the very nature of science. Some people tend to equate science with all that is cold, dangerous and controlling. This problem is exacerbated by the inability of many scientists to translate their discoveries into the vernacular. Instead, many rely upon an impersonal, mechanistic jargon to convey their findings about human beings. In contrast, treatments cloaked in a language of quick fixes, nurturing love or instinct have strong emotional appeal.
- In some quarters, there is strong resistance to the very notion of treatment itself, analogous, perhaps, to similar arguments raging a round other conditions, such as deafness. Rather than seeing autism as a fundamental disability—one that strips a human being of many possibilities and promises — some advocates fiercely insist on a policy of acceptance of autistic individual for who they are, and decry any attempts at treatment as oppression.
- There are serious problems creating turmoil within the field of behavior analysis, a field scientifically validated as effective in the treatment of individuals with autism. These include frequent misapplication of behavioral science by unskilled or unethical practitioners; the absence of nationally accepted standards of competency; and the claims of a few individuals to be the only providers of worth.
- And finally, there is the seductive rhetoric of an ideology that keeps trumpeting such appealing concepts as open-mindedness, choice, an eclectic approach, and options. Unfortunately, open-mindedness without healthy skepticism, choice that is not informed choice, and options embraced for the sake of option alone only prolong the sad history of failed treatments.
Disastrous Consequences
But whatever the causes, the resultant dismissal of treatments backed by science has disastrous consequences for our children’s already fragile future. When children are denied effective treatment, there is a double tragedy: their potential for growth and learning is thwarted; and they often become the subjects (or objects) of repeated, ineffective experiments as parents pursue all possible flickers of hope.
Continue These Trends?
All these political ideologies have survived, however, largely because both professionals and parents have allowed their survival. It is a natural human tendency to follow personalities, especially charismatic ones, rather than dry, scientific literature. We tend to seek warm and compelling stories, rather than cold statistics. We are very willing to accept the expertise of people who base their recommendations upon anecdote and opinion, their “thirty years in the field,” their clinical judgment; and we are often bored with people who talk about data, numbers, controlling for variables, and the like.
A New Path
But after the debacle of the Bettelheim era, where one man’s opinion was allowed to dominate lies, it is clear we need to challenge every one of these experts with at least as much skepticism as we bring to the purchase of a used car, let alone to life-shaping decisions for our children. We need to add critical thinking to compassion, or we will continuously follow every self-confident savior and every sad dead end.
So where does that leave us, we who love our children, and who wish to make decisions based upon both tenderness and tough thinking? It leaves us in need of reliable guidance, founded on facts, not fame.
ASAT
It is that pressing need that has given rise to ASAT’s mission: to disseminate scientifically sound information about autism and treatments for autism. But, recognizing that access to accurate information is only half the battle, ASAT will promote effective training models in university settings. And recognizing that treatments will only be as effective as the people providing the treatments, ASAT will support the development of professional credentialing, and standards of education and treatment.
Facts, Not Fads
As a guiding principle, ASAT intends to evaluate claims about treatment from the perspective of sound, scientific reasoning. ASAT is locked into no one treatment for autism, but we will not hesitate to let people know which treatments are supported by solid scientific research, and which are not—be they from medical, behavioral or educational science. We are seeking to move public awareness away from personalities and fads, true hope that scientific research has produced, and will continue to produce, for all of our children.
By Whose Authority?
How will ASAT provide such guidance? Not through any personal opinion or belief of ours, but through the help of an exemplary Advisory Board drawn from both the biological and behavioral sciences—men and women whose strongest credential is not their popularity, but their adherence to the highest standards of scientific integrity. ASAT claims no authority other than what reason and science have supported. We have no illusions about the fallibility of human opinion. But one thing we do know is that children and adults with autism, and the people who love them, can be helped. We know autism is treatable, but only when people get the information and help they need.
Science for People
And finally, it is important to note that ASAT will use the tools of science to achieve our mission, but we are not working for science as an end. The end, for all of us, lies not in the mere furthering of human knowledge or human technology. The end lies in the lovely faces of our children, in their sweet eyes, in their profound worthiness. It is science that guides us, but love that inspires us, and we will not fail our children.
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@asatonline.org
