The power of words: The IACC works to reconcile different perspectives on autism
This guest post is by Geri Dawson, Ph.D., CSO, Autism Speaks.
The task of this week’s meeting of the Interagency Autism Coordinating Committee (IACC) in Rockville, Md. was to approve an update to the IACC’s Strategic Plan for Autism Research. Most of the updated sections had been approved at earlier meetings, but the committee still had to grapple with the introduction, which contained several sticky phrases. The committee is a diverse group of people ranging from a parent who believes that autism is the result of injury caused by toxins in our environment to an adult on the spectrum who views autism as a natural part of our human diversity. Given the wide range of perspectives, words matter a lot.
For example, the committee all agreed that the plan should convey a sense of urgency. Autism represents a serious public health crisis and immediate action is required. So far so good. But how should the plan convey that sense of urgency? As the discussion began, a lively debate ensued about a proposed revision to the plan’s opening paragraph, which was adapted from the Autism Speaks’ website:
Today, autism is more common than childhood cancer, juvenile diabetes and pediatric AIDS combined, and the increasing numbers of children being diagnosed with autism has created a national health emergency. In a September 30, 2009 speech at the National Institutes of Health, President Obama specifically cited autism, along with cancer and heart disease, as one of three health conditions targeted for major scientific research investment through the American Recovery and Reinvestment Act. The President expressed his hope that research into genetic and environmental factors would result in strides in early intervention, treatments and therapies to help people affected by autism achieve their fullest potential (hot button words bolded).
The words that some members were concerned about were “childhood cancer, juvenile diabetes and pediatric AIDS.” They objected to the notion of comparing autism to diseases such as these and felt such a comparison was disrespectful to people with autism. After all, autism is not a terminal disease like cancer, one person pointed out. Others noted that the comparison was meant only to convey the scale of the problem, not to imply that autism was a terminal disease. They said that the comparison was meant to convey the huge number of people who are affected by autism. The discussion continued until Tom Insel finally pointed out that the committee had spent 30 minutes discussing the first sentence of the plan, and we still had a lot of work to do. A vote was then taken and the revision was adopted.
Similar issues were raised about the following passage, which was part of last year’s document:
The cost of ASD to affected people, families, and society is enormous. A great majority of adults with ASD struggle with ongoing and mostly unmet needs for employment, housing, services, and supports. Compounding these stressors, families with a child with autism typically lose income, possibly as a result of one parent leaving the workforce in order to care for and meet the special health and educational needs of the child. The cost to society of ASD is currently estimated to be $35-$90 billion annually, the higher estimate being comparable to Alzheimer’s disease (hot button words bolded).
Again, some committee members asked whether we should we compare ASD to Alzheimer’s disease and asked what kind of message we send to people with autism when we characterize autism as a “burden to society?” This passage could be alienating to parts of the autism community, it was pointed out. Other committee members argued that people should be made aware that families do carry a substantial burden, both financially and emotionally, especially when these families don’t have adequate services and interventions. They noted that it is important to know how much autism costs society, as this helps justify the need to increase our investment in developing better interventions. By a slimmer margin, a committee vote kept this passage in.
Less controversial but still garnering substantial discussion was the proposal to add a cross-cutting theme on the ethical, legal and social implications of autism research. The proposed language was:
As more progress is made in the autism research arena, new ethical, legal and social implications of ASD research will need to be considered and taken into account by researchers and consumers of research findings. In particular, genetic research poses unique ethical risks that require consideration both within research projects focused on other questions and in efforts dedicated specifically to exploring these ethical challenges and the appropriate responses to them. As such efforts are undertaken, it is critically important to include the autistic adult community, family members of individuals on the autism spectrum and other stakeholder groups within the discussion (hot button words bolded).
The committee was in unanimous agreement that studying the ethical issues associated with autism research is very important. At an earlier IACC meeting, I had proposed adding a research objective to this effect. The committee decided, however, that virtually all research on autism poses ethical risks and benefits, whether that research is on genetics, early screening or interventions. Furthermore, it was decided that, whenever possible, all people with autism, not just adults, should be part of the discussion about the potential risks and benefits of research.
Finally, the committee struggled with whether to add another new cross-cutting theme, one focused on self-determination. Self-determination refers to the ability to consider options and make appropriate choices regarding where to live, work, and spend one’s leisure time. Although in theory and spirit most people on the committee agreed with this concept, some expressed the concern that it was unrealistic to expect a severely impaired person with autism to live a self-determined life. “Could we perhaps substitute the phrase ‘supported self-determination,’” one committee member asked. When consensus wasn’t easily reached, the committee entertained deferring the decision until they had more time to deliberate and understand the implications of adding such language to the strategic plan. Finally, however, a vote was taken and the proposal to include the cross-cutting theme of self-determination was adopted by a slim margin.
Unlike some other committee members, I felt confident that adding a cross-cutting theme on self-determination would strengthen the strategic plan and argued strongly for its inclusion. As a clinician who has worked for years with people with autism of all ages, including those who are severely affected, I have witnessed the power and success of empowering all people with ASD with self-determination. This begins early on with teaching young children with ASD how they can effectively express their needs, wants and preferences. By doing so, such a child will have stronger self-esteem and be happier, more motivated to learn, and more likely to succeed. A study of two types of applied behavior analysis, one in which the goal and reward was chosen by the therapist and another in which they were chosen by the child with ASD, found that allowing children to make choices and work with preferred materials resulted in more highly motivated children and faster learning rates. Similarly, I have worked with severely affected nonverbal adults whose only option for expressing their dissatisfaction with their lives was to become aggressive or noncompliant. Offering these adults appropriate choices and control over how they wanted to spend their work and leisure time allowed them to live happier, more productive lives with little need for disruptive behavior.
There is often the misperception that self-determination means that a person is entirely autonomous or independent. All of us are dependent on others, and none of us is entirely autonomous. However, expressing one’s preferences, making choices, and having a sense of control over one’s life is not only a human right, it is an inherent part of being a healthy, happy human being.
I left the meeting feeling that the IACC has come a long way. Although there was disagreement among its members and people felt passionately about their positions, people treated each other with respect. Unlike the stalemate we are witnessing in our federal government with parties strongly entrenched and unwilling to “reach across the aisle,” committee members were more flexible with different subgroups of people coalesced around different positions. It was clear that, although we each come from a different perspective, we are all working toward a common cause: improving the lives of people with autism and their families. Working together, rather than against, each other can only accelerate our efforts toward this common goal.