Who Guides Autism Science?

Autistic people seek a voice in research and services that affect us.

Posted May 10, 2018

The autism community has enthusiastically embraced the concept of “nothing about us without us.” That slogan, which first appeared in European politics, has been taken up by the disability rights movement.  It is particularly meaningful with respect to autism advocacy because autistic people did not initially advocate for themselves.  Autism was first diagnosed in children, and parents emerged as their advocates.

The 1990s revision of the Diagnostic and Statistical Manual of Mental Disorders (DSM) broadened the definition of autism, which led to an increase in diagnoses of children and adults. Twenty years later, the first generation of children diagnosed under DSM IV has grown up. Many now speak for themselves. In addition, thousands of older autistic adults stand ready to communicate their wants and needs. Parents are no longer quite as central with respect to giving voice to autistic people.

It should come as no surprise that autistics choose self-determination and self-advocacy to the maximum extent possible. Most advocacy is local, as autistic adults express their wishes for accommodations, supports, and services. In the past decade we’ve seen the emergence of group advocacy, which is a very different thing, and if anything, more important for the long term.

Individual advocacy gets us what we need to thrive in our current environment. Group advocacy has the potential to shape the environment and create tools all of us can use. An individual may win coverage of a service or therapy under their personal health insurance. Successful group advocacy makes a therapy available to all. 

Self-advocacy is vital to the shaping of autism research. Autistic people are the only ones who truly know what it’s like to live with autism. Parents and clinicians may observe autistic people, but watching is not the same as first-person experience. Scientists need to hear from actual autistics to know what questions to ask, and how to shape research to be ethical and useful. Autistics and scientists both benefit by working together.

Scientists need subjects for research studies. Buy-in from community self-advocates makes recruitment easier, and success far more likely. People are much more enthusiastic about recommending participation in a study if they’ve been involved in shaping and reviewing its structure and ethics. Autistic people are more likely to join a study that’s already been vetted by other autistics.

My personal experience has been that most researchers welcome autistic input, but have a hard time finding it. At the same time, autistic people ask how to get involved in research. There’s a disconnect between searching scientists and willing autistics.  This week’s International Meeting for Autism Research (INSAR) held this year in Rotterdam is a place where the two groups connect.

Involvement usually starts locally at universities with ongoing autism research programs. They may have web pages with titles like, “participate in autism studies,” or “take part in research.”  Alternately they may run autism centers, where one can walk in and talk to someone. An autistic person’s first introduction to autism science may be via participation in a study.  The range of studies is enormous – one researcher may be studying language while another studies anxiety and another studies genetics or basic biology.  

Adults who sign up as research subjects make connections with scientists which opens the door to future participation. Autistic people may have opportunities to participate in other studies and offer an autistic perspective that helps shape future research grant applications. 

Local participation gives autistic people a chance to see how research is conducted. For some, local participation is a stepping stone to national research advocacy, with the National Institutes of Health (NIH), the Department of Defense (DoD), or the Centers for Disease Control and Prevention (CDC).  Those Federal organizations rely on public reviewers to give first-level input as to the design and value of studies they consider funding.

To understand what that means we need to take a step back and look at how autism research is conceived and managed by the government.  This article describes the American process; processes in other countries may vary.

The Interagency Autism Coordinating Committee (IACC) is the top-level Federal autism committee.  IACC includes a mix of Federal and public members. Federal members represent the departments who deliver services (Social Security or Housing) and the departments who do research (NIH).  Public members represent research universities, autism advocacy organizations and the autism community (individuals and parents).

The IACC’s stated mission is as follows:

Provide advice to the Secretary of Health and Human Services regarding Federal activities related to autism spectrum disorder.

Facilitate the exchange of information on and coordination of ASD activities among the member agencies and organizations.

Increase public understanding of the member agencies' activities, programs, policies, and research by providing a public forum for discussions related to ASD research and services.

IACC members are appointed by the Secretary of Health and Human Services. Anyone may nominate themselves or someone else for IACC. Nominations were last opened in 2014, with new members named in 2015. Those terms will expire in fall 2019, at which time some public members may be re-appointed and new members will be named.

Between one-third and one-half of the committee must be made up of public members. At least two members must be autistic, two must be parents or guardians of autistic people, and two must represent leading advocacy organizations.

IACC produces a strategic plan every year, in which they raise questions and concerns that may be answered through research. NIH and other agencies respond by formulating requests for proposals and seeking grant applications from researchers.

In that manner IACC gives autistic people a say in the direction of research. Federal agencies also seek public input when reviewing applications and autistic people can apply to be reviewers. There they can have a voice about specific proposals.

In the words of NIH:

Critiques from public reviewers typically focus on the strengths and weaknesses of an application’s public health significance and/or innovation; on the feasibility of plans for recruitment, retention, and follow-up of subjects; on outreach efforts to special and historically disadvantaged populations; and on issues pertaining to the protection of human subjects.

At review meetings, public reviewers join the discussion of applications with scientific reviewers and vote on the merit of each application discussed.

There are no specific qualifications to become a public reviewer though agencies prefer reviewers with personal connections to autism (as parents or actually autistic people.) Reviewers who can take a community perspective are preferred; experience with an advocacy organization might demonstrate that. Reviewers with knowledge of science and the research and review process will have an advantage.

There is no formal educational requirement, and anyone can apply. Reviewers may do their jobs at home and meet by phone, or they meet at the agency. Reviewers are paid a modest honorarium and expenses. Individuals who participate on one review board will often be invited to join other boards. Review board experience may also be a stepping stone to higher level committees, like IACC.  

Autistic people who get involved guiding autism science have a chance to make a real impact. The autistic perspective is invaluable to shape research for maximum benefit to the community.  It’s a great opportunity but also a great challenge and responsibility. Advocates who guide research or policy must always be mindful of their duty to all autistic people, and their diversity.  While autistic people are the primary focus of advocacy, advocates should also me mindful of parent’s need for respite and support. Clinicians and educators also have concerns and needs and help for them helps autistics down the line.

I wish there were a formal training program to develop autistic science advocates. As universities develop more courses for the autistic community they may well address this need. Until then we must rely on self-study and the support of engaged scientists. Organizations like INSAR – the International Society for Autism Research – help connect us through their community programs.