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19 People Who Fought for Autism Awareness

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These scientists, teachers, and community leaders sought greater understanding of life on the spectrum

Monday, April 2 is World Autism Awareness Day, kicking off World Autism Month, which lasts throughout April. Established by the United Nations, World Autism Awareness Day offers a chance for those affected by autism to spread the word about what it means — and to advocate against the discrimination and misunderstandings that people with autism face.

In the early days of the autism awareness movement, the discourse about the autism spectrum was heavily shaped by neurotypical parents and teachers of children with autism. That historical trend is reflected in the obituaries for researchers, educators, and advocates who've died in recent years, as seen below. Of course, the autism activists of today are more and more frequently adults with autism, whose voices and perspectives are leading the way toward. Meanwhile, from Legacy's obituary pages, we note the lives of 19 people from previous generations, who worked in years past to further the causes of autism research and awareness.

Daryl Blonder, author and web developer. "Last fall, he published a remarkably poignant memoir, 'Problem Child: Confessions of an Aspie,' that chronicles his struggles with Asperger syndrome, obsessive compulsive disorder, and depression. Most recently, he developed an artful website that reached out to adults with autism spectrum disorders." Read more

Victor Winston, founder of the Journal of Autism and Developmental Disorders. “He was raised in Vilna, Poland (now Vilnius, Lithuania) but as a teenager was forcibly resettled in Kazakhstan in Central Asia by the Soviets two week prior to the Nazi invasion. Through ingenuity, resourcefulness, and luck he survived World War II and came to the United States in 1946 almost penniless with minimal knowledge of English…” Read more

Teresa Bolick, author of “Asperger Syndrome and Adolescence” and “Asperger Syndrome and Young Children.” “Through her teaching and writing, Dr. Bolick provided countless parents with specific strategies to guide their children through the rules and norms of school and social life. She helped families better understand and communicate with their children.” Read mor

Richard L. Simpson, leader of the University of Kansas’s pioneering program for teachers of students with autism. “His former doctoral and masters students can be found on university campuses across the United States and in foreign countries providing leadership for special education, autism education, and the rights of students with social and emotional disabilities.” Read more

Donna Williams, author and activist. "Donna, for those who don’t know, was the author of landmark autism memoirs, starting with 1992’s 'Nobody Nowhere.' Though her books did well, and the movie rights to her life were sold (reportedly, to actress Julia Roberts), she never achieved the fame or speaking notoriety of others. But Donna seemed ok with that." Read more

Monica Ann Walker, advocate for children with autism in the Kansas City area. “She was instrumental & a driving force in establishing the Autism Society of the Heartland and passing state legislation to extend training, care & assistance to children within the autism spectrum. Monica was an avid collector of antique sewing buttons & was an active member of the National Button Society, Kansas Button Society (past President), the Missouri Button Society & she attended their conventions all over the country.” Read more

Louisa M.T. Silva, founder of the Qigong Sensory Training Institute. “Dr. Silva opened her own practice in the 1990's with an emphasis on Chinese medicine and acupuncture. Over the years she became interested in researching and treating Autism, which became her passion. She ultimately founded Qigong Sensory Training Institute (Q.S.T.I.) for the training of a massage technique for treatment of symptoms of Autism.” Read more

Charles Kimball Skinner, advocate for children with autism in Delaware. “After dental school, he served as a captain in the US Air Force until 1963, when he established his private practice in Newark, lasting for 43 years until his retirement… Perhaps his greatest achievement and pride was editing the legislative bill to create Delaware's educational program for autistic children, one of the first and most comprehensive in the United States.” Read more

Monica Bartlett, autism activist who helped launch Autism Speaks. "In 2005, she joined a small team of activists committed to raising awareness and research funding for autism. Her first assignment was to write the mission statement for a new nonprofit organization called Autism Speaks, which since then has become the largest organization in the world dedicated to the cause of autism research, treatment, and awareness." Read more

Dorithia Martin-Coleman, advocate for children with autism in Nevada. "Dorithia was determined in her research efforts to find out as much as she could about Autism Spectrum Disorder so that she could better support, assist, and strengthen Nevada families of children with disabilities by providing vital information, services, and training; therefore, she began working with the highly skilled, compassionate, and dedicated team of Nevada PEP professionals." Read more

Bob Morris, engineer and mentor to adults with autism. "Bob had autism and he saw and thought about the world in a unique fashion. This allowed him to solve problems that stumped others. Bob recognized that same uniqueness in others as well, and starting in the late 1980's he began to seek out and mentor other unique adults, "autistic cousins" he liked to call them. For many years he worked tirelessly and without much compensation to help others achieve independence and respect. Bob mentored many adults on the autism spectrum, and his premature departure will leave a void that will be hard to fill." Read more

Nancy H.H. Cale, cofounder of Unlocking Autism. "When her grandson was diagnosed with autism at age 3, in his honor, she co-founded Unlocking Autism where she worked to bring awareness to the growing epidemic, partnering with state and local government and eventually earning a Certificate of Special Congressional Recognition for her efforts. She continued to answer the hotline phone for Autism Research Institute until the day she was admitted to the hospital." Read more

Jaak Panksepp, researcher who studied the brain, behavior, and emotion. "Mr. Panksepp arrived at BGSU in 1972, and early on received attention for his research on how the brain influences the desire for food, drink, and sleep. He later was recognized for work on autism and attention deficit-hyperactivity disorder." Read more

Gerald "Gerry" Groden, psychologist and author. "Gerry was nationally and internationally recognized for his leadership in bringing innovative treatments to children and adults with autism. Together with his wife, June Groden, Gerry founded the Groden Center in Providence in 1976. Over the next forty years, under their leadership, the Groden Center evolved into the Groden Network of Programs, one of the largest and most successful autism programs in the United States." Read more

Manon Sohn, autism therapist and researcher. "Believing that stepping out of the laboratory and better understanding the plight of educators was needed to further herself, she pursued clinical work. At the time of her death, she was employed as an autism therapist, supporting those on the spectrum in schools and working with their families—her empathy and compassion still shining brightly." Read more

Thelma Volger, musician and educator who founded the Ankeny Academy of Music. "Her research in the United States and Australia led to the development of the Language Delay Replication Project where she investigated the use of musical tones and rhythm patterns to help create language for children with autism." Read more

Martha Ziegler, activist for the educational rights of children with disabilities. "Martha recalled watching her school-aged daughter Mary Ann, who has autism, stand at the window and watch her younger brother, Fred, head to school every morning. Participating in the Martin Luther King March on Washington a few years earlier drove home the need to organize to end this kind of exclusion also. 'Don’t mourn, organize' became one of our mottos." Read more

Suzanne Wright, cofounder of Autism Speaks. “In 2005, Suzanne and her husband Bob Wright, co-founded Autism Speaks after their grandson Christian, was diagnosed with autism. Guided by the Wright's leadership and vision, Autism Speaks has since grown into the world's leading autism science and advocacy organization.” Read more

Bonny Lou Hulsy, advocate for people with autism in California. "Unsatisfied with the lack of services for children with autism in Kern County, Bonny, and her dear friend Jolene Billinger, who also had a child with autism, founded the Valley Achievement Center (VAC) in 1998, to provide children with autism and other developmental disabilities, and their families, an educational setting in which they would thrive." Read more

Article updated 3/28/2018.