Consumer Involvement
ARP Consumer Reviewer
ARP Consumer Reviewer
(Photo Provided)
Jennifer Cook wants to remove the negative labels from an autism diagnosis. She believes that autism spectrum disorder is marked by “differences in the way people learn, play, and think – it can make you clever and curious, and it can make you nervous and unsure, but all of that is being a person.”
Growing up, she was intelligent and social; however, years later, when her three children were diagnosed with autism, she began to reflect on her own life and saw many of her thoughts and actions in a new light. She was diagnosed with autism shortly afterwards. This was a revelation for her, as it answered many of the “whys” in her life and helped empower her to find solutions that made sense for her life. She found comfort in learning more about how her brain works, which led to reduced anxiety and gave her the confidence to share her beliefs.
Since her diagnosis, she has become a fierce advocate for the autism community, sitting on the Autism Society of America’s (ASA) Council of Autistic Advisors, consulting for a congressional autism research panel, and presenting at locations such as the National Institutes of Health, the White House, and more. She is the on-screen autism expert on the Netflix show, Love on the Spectrum, and has written several bestselling books such as The Asperkids (Secret) Book of Social Rules, a memoir, Autism in Heels, and My Friend Julia: A Sesame Street Book About Autism. In her books, she explores tools that autistic people can use to take charge of their lives.
As a member of the ASA, Jennifer advocates that the goal of research should be to empower and support the autistic community rather than finding a “cure.” She challenges many stereotypes of autism and advocates for the study of underrepresented areas such as sex differences and speech support for non-speaking autistics. In fiscal year 2022, Jennifer represented the ASA as a consumer peer reviewer for the Department of Defense’s Autism Research Program. As both a self-advocate and autism caregiver, she has brought a different perspective to the program. There is often a disconnect between the views of the autistic community and the research interests of scientists; however, the inclusion of advocates like Jennifer in the process encourages research that is respectful of the opinions of the autism community and focused on the goal of supporting autistic people.
Jennifer continues to advocate that, “Autism is not a tragedy; it’s a neurologic difference.”
More work needs to be done to address the research gaps in the autism field; however, the work of Jennifer and many autism advocates like her is critical to the mission of improving the lives of autistic people, both now and in their future.
The views, opinions, and/or findings contained in this paper are those of the author(s) and should not be construed as an official Department of the Army position, policy, or decision.
Last updated Tuesday, April 4, 2023