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Comments at November 21, 2008 IACC Meeting

IACC Presentation on Ethics in Autism Research: November 21, 2008

Article by ASAN Board Member Paula Durbin-Westby

ASAN was invited by the IACC to give a presentation on ethics in autism research. Although I gave the presentation, it was a collaboration among many people, who all worked together to develop the slide show.

Ethical Concerns in Autism Research: Presentation to the IACC

IACC Full Committee Meeting Minutes, Nov. 21, 2008

The following are the comments I gave.

Ethical Concerns in Autism Research: Presentation to the Interagency Autism Coordinating Committee on November 21, 2008

Note: This presentation is a collaborative effort of the people listed at the end of the presentation. The asterisks are notes to myself to emphasize certain words during the presentation. I left them in so people can see a few places where I put extra emphasis.

The Autistic Self-Advocacy Network is an international nonprofit organization run by autistic self-advocates. Our focuses include: public policy advocacy, community-based research, social support groups, and other initiatives.

The Autistic Self Advocacy Network is here today representing the international autistic self-advocacy community’s concerns about research ethics for autism. In general, we are pleased to see language in the Strategic Plan that focuses on community settings, and services research funding. We have additional ethical concerns that should be addressed in the Strategic Plan.

Major Ethical Concerns for Autism Research:

Among the most important ethical concerns we have are these:

Expanding the focus of research to the whole individual,

Including a lifespan focus and a more balanced view of Autism Spectrum conditions,

Additional members on the Interagency Autism Coordinating Committee,

Quality of life issues,

Inclusion of people on the autism spectrum in all aspects of research,

Funding considerations that have an ethical impact on the overall state of autism research.

In addition there is an ongoing concern with the lack of mention within the Strategic Plan itself, of potential ethical conflicts in genetic and other research, including “eradication of autism,” and possible unintended or detrimental effects of genetic and pharmaceutical therapies.

Expanding Focus on Whole Individual: A Balanced View of Autism

Expand research to whole individual across the entire lifespan. Ethical research will value and therefore address the entire life of the person with an autism spectrum condition, including individuals of varying abilities and disabilities.

Research that focuses only on impairments may miss positive aspects of the individual person.

Contrast the all-too-prevalent “devastating disorder” rhetoric (which I note is not at all limited to any particular subset of people on the autism spectrum) with literature about other disabilities, where there is a positive, lifespan focus.

For example, the ARC of the United States asserts: “The Arc is devoted to promoting and improving supports and services for all people with intellectual and developmental disabilities”.

The National Institute of Neurological Disorders and Stroke refers to cerebral palsy, not as “a “devastating,” or a “puzzling,” disorder, as so much of the introductory material in published autism research does, but asserts “Cerebral palsy isn’t a disease… There is no cure for cerebral palsy, but supportive treatments, medications, and surgery can help many individuals improve their motor skills and ability to communicate with the world.”

While NIMH and the IACC are obviously not first and foremost service-delivery organizations, the goal of all scientific research into any disabling conditions should ultimately be the application of that research to real-life situations in ways that directly benefit the subjects of that research.

Including People on the Autism Spectrum on the IACC:

People on the autism spectrum are a major stakeholder group, yet is felt by many of us that autistic adults have been effectively excluded from the process by virtue of our *organized constituencies* not having had a seat at the table. The Strategic Plan should remain open to additional changes until this issue is addressed and more autistic members are appointed to the workgroups, committees and the IACC itself. If the one member on the autism spectrum is absent during voting and discussion, the concerns of people on the autism spectrum may not be adequately represented. [Note: I tried to put a lot of emphasis on this sentence, which I added when I saw that Stephen Shore was not present and did not have a stand-in.]

The IACC and its workgroups should better represent the diversity of stakeholder groups in the process.

Include people who use alternative and assistive communication, draw autistic members from a wide age range, and draw from people with diverse living and working situations.

In addition, include autistic adults who have perspectives other than “prevention” and “cure.” We are an important stakeholder groups and recognition of our concerns and policy goals must be included in any *ethical* undertaking.

Quality of Life Issues

• Domains measured by World Health Organization Quality of Life Instrument:

– Social Relationships & Social Support
– Physical Health
– Mental Health/Psychological Health
– Independence: Mobility, Activities of Daily Living, Communication & Work Capacity
– Transportation Access
– Vocation
– Recreation & Leisure

All of the domains here are aspects of quality of life in regards to health according to international standards.

With only about 1 percent of the NIMH budget for the year 2008 devoted to services and supports research, many of these quality of life issues, which are priorities for people on the autism spectrum, will remain *unfunded* or *underfunded*.

Ethical research studies things valued by autistics (for example employment, education, attitudes, economic and health disparities).

Inclusion of Autistic People As Research Collaborators

One among a number of models for including people on the autism spectrum in research projects is community-based participatory research.

Research is not only scientific and medical but also affects decision-and policymaking about the groups studied.

Ethical research seeks to understand first-hand perspectives — that is, autistics themselves should be asked about their lives, experienced, opinions, values, etc., etc. rather than primarily having others speak for them.

In addition, we do not find it ethical for the research community (or the professional community) to treat autism like it’s a disease or illness. Autism is a developmental disability and not a condition that stands alone. Autism is often discussed in a quite different manner than other developmental disabilities are, as I already mentioned in my previous comments.

In addition, autistic community members should be represented on IRBs/ethic review boards for protocols that include or exclude them, and on grant review panels.

(A slide of the CBPR process was shown, which can be found on the AASPIRE website

Researchers and community partners each contribute their own strengths to a project. CBPR principles are reflected operationally on each side of this diagram.

The Academic Autistic Spectrum Partnership in Research and Education is one example of a community-based participatory research team. Current research focuses on improvement of health care for autistic adults.

Of the two co-directors, one is on the autism spectrum and the other is not. [I had to cut out a number of comments on AASPIRE, which I have already talked about at previous IACC meetings, due to time constraints.]

Funding considerations

The May 2008 figure I have of 1.6 out of 127 million dollars toward research into supports and services across the lifespan is a somewhat disturbing statement about the priorities of NIMH and the private organizations that partner to fund research.

Choice of topics studied *is* driven by funding. If little funding is available for research that can have an *immediate* impact on the well-being and life chances of individuals on the autism spectrum, researchers will turn to other areas where funding exists, and away from the research that might make the *most* difference in the lives of individuals and their families. We consider supports and services research to be of utmost importance.

We therefore urge a shift of funding away from a narrow focus on causes, cures, and the “recovery,” concept, which has been shown to be invalid for other populations once thought to be “curable,” such as homosexuality. The focus should be on maximizing skills , like communication, and not on “reducing autistic traits,” especially when those traits do not seem to be well understood by non-autistic researchers or the general population.

Move instead toward a focus on services and supports, including communication technology, and *affordable* communication technology, which will be *much* more effective for a larger number of people on the autism spectrum. We also urge replacement or removal of language such as “ASD costs impacts” since true costs are in terms of an inaccessible society. Lack of employment among African Americans does not mean that their presence “costs” society somehow. Whereas in the case of racial and ethnic minorities, change comes in the form of laws that attempt to change inequalities in the structure of society, in the case of people on the autism spectrum, the societal changes come in the form of effective service delivery and supports. We request removal of prevention-oriented language and goals in general, throughout the Strategic Plan. Funding services and supports might indeed be more cost effective than funding attempts to prevent what in all likelihood is a legitimate part of natural human diversity.

Ethical Concerns in Autism Research: Contributors [in alphabetical order]

• Anne Corwin. Team Member, AASPIRE
• Paula C. Durbin-Westby. Board of Directors, ASAN
• Katherine McDonald, PhD, Assistant Professor, Community Psychology, Portland State University. Researcher, AASPIRE
• Ari Ne’eman. Founding President, ASAN
• Christina Nicolaidis, MD, MPH, Associate Professor, Departments of Medicine and Public Health and Preventive Medicine, Oregon Health and Science University. Co-Director, AASPIRE
• Dora Raymaker. Board of Directors, ASAN. Co-Director, AASPIRE.
• Scott Michael Robertson. Vice President, ASAN. Researcher, AASPIRE

This presentation is a collaborative effort between the individuals listed here and a number of other autistic community members and non-autistic supporters.

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