Timeline: The Politics & Marketing Behind The Autism Epidemic | The 90s
1990 | 1991 | 1992 | 1993 | 1994 | 1995 | 1996 | 1997 | 1998 | 1999
[Timeline still being contracted. Last updated: September 11, 2022]
Timeline: Early Years | 80s | 90s | 00s | 10s | 20s
Autism Politics & Initiatives
The Autism Market
Grants , Funded Projects & Money Raised
Pivotal
Marketing & Media Attention
Organizations & Companies
Autistic Community & Allies
1990
1990
Individuals with Disabilities Act (ADA) of 1990
The ADA is a civil rights law that prohibits discrimination against individuals with disabilities in all areas of public life, including jobs, schools, transportation, and all public and private places that are open to the general public.
The purpose of the law is to make sure that people with disabilities have the same rights and opportunities as everyone else.
1991
1991
The Marcus Institute launched by Bernie and Billi Marcus in Atlanta, Georgia
Bernie Marcus and his wife Billi established The Marcus Institute in Atlanta, Georgia. Marcus later contributed $25 million to the launch of Autism Speaks.
1991
Autism Society of America conference
In 1991, autistic advocate Jim Sinclair, with other Autistics, attended the Autism Society of America (ASA) conference.
The visible presence of autistics at the conference attracted the attention of the ASA Board of Directors. Autistics were approached at the conference by a board member and a few NT parents and asked if they’d like to help establish an ASA autistic advisory committee, have an autistic representative at each board meeting, participate in the planning of future conferences, and have space in their community newsletter.
1992
Autism Network International (ANI) is founded by Jim Sinclair, Kathy Grant and Donna Williams.
This organization was Autistic founded
Dan Marino Foundation is founded by parents of an Autistic, Dan Marino and Claire Marino in 1992.
1992
Nobody Nowhere: The Extraordinary Autobiography of an Autistic Girl is the award-nominated debut book by Australian Donna Williams. It was initially published in Britain in 1992, and was on the New York Times Best Seller list for 15 weeks in the first half of 1993.
1993
“Don’t Mourn For Us” is published by Jim Sinclair in Our Voice, Vol. 1, No. 3. This is a very important piece in the Autistic Civil Rights movement.
At the 1993 International Conference on Autism, Sinclair challenged the ’autism as a tragedy’ narrative in their presentation, Don’t Mourn For Us. The conference was a joint effort between Autism Society of America and Autism Society Canada, and was hosted in Toronto that year.
1993
HollyRod Foundation is established by parents of an autistic, Rodney and Holly Robinson Peete.
1993
Families For Effective Autism Treatment (FEAT) is established by a group of parents and professionals who wanted to improve early intervention services in the Sacramento, California area.
1994
1994
National Alliance for Autism Research (NAAR) founded by Eric London, Karen Margulis London, parents of an Autistic.
NAAR Projects/Initiatives: Autism Tissue Program, High Risk Baby Sibling Autism Research Project, NAAR Genome Project, NAARRATIVE
NAAR will merge with Autism Speaks in 2006
1994
Somebody Somewhere is a book written by the autistic author, songwriter, screenwriter and artist Donna Williams. It is the 1994 sequel to the bestseller Nobody Nowhere, which spent 15 weeks on the New York Times Bestseller List.
1995
1995
Defeat Autism Now! (DAN!) was launched by the psychologist Bernard Rimland and a co-founder of Autism Society of America. Rimland was also a father of an Autistic.
1996
Alpine Learning Group: Training manual Behavioral intervention for young children with autism: A manual for parents and professionals (1996), published.
It was edited by Catherine Maurice, Ph.D., a New York City parent advocate who hired Taylor to run her two children’s early ABA home programs in 1987.
June 1996
Cure Autism Now Parent Advisory Board
Included: Richard Demirjian, Melinda Kotler, Rick Rollens, Diane Adams, Marianne Toedtman, Magdalena Del Olmo-Beltram, Cindy Goldenberg, Lev Gonick, Hyman Katz, Julia Ting, Jonathan Kaunitz, Sheldon Krasner, Nancy Ravner, Ricki Robinson, Mary Seward, Ken Sokolski, Lisa Szilagyi, Shelly Stravitz, Robert Tesh, Ellen Bolte, Lisa Lewis, Ray Gallup , Mary Coyle, Jean Curtain, Alan and Karyn Friedman, Deborah Tritschler, Dick Wicks, Nichole Shultz, Linda Supowitz, Mandy Hornig-Rohan, Lisa Boswell, Teri McHugh, Daniella Marian-Cerati, Brenda O’Reilly
August 1996
Cure Autism Now | The Autism Genetic Resource Exchange
The Autism Genetic Resource Exchange is sponsored by CAN, the Cure Autism Now Foundation, An organization formed by parents and researchers, dedicated to finding biological treatment and a cure for autism.
1996
Cure Autism Now | 1996 AGRE and Single Nucleotide Polymorphisms (SNP) Genetic Work Group
Cure Autism Now sponsored its first meeting, which resulted in the establishment of AGRE. This has become an invaluable resource to the autism field (see AGRE for Families or AGRE for Researchers).Subsequently, Cure Autism Now held two meetings of a Single Nucleotide Polymorphisms (SNP) Genetic Work Group (October 2002, Baltimore, MD, and March 2002, San Diego, CA), which was formed to analyze how to move AGRE forward further and faster.
1997
1997
Collaborative Programs of Excellence in Autism network created by NICHD.
1997
Research Funded by National Alliance for Autism Research (NAAR)
Included: Barry Gordon, Margaret A. Pericak-Vance, W. Ian Lipkin, Rebecca Landa, Pauline A. Filipek
Also: University of California-Irvine, Kennedy-Krieger Institute, Duke University Center for Human Genetics, The Johns Hopkins University School of Medicine
1997
Southwest Autism Research & Resource Center (SARRC)
Founded by parents of an Autistic, Denise Resnik, Cindy Schneider, and Raun Melmed in 1997.
1997
Cure Autism Now Consensus Conference
The Cure Autism Now Consensus Conference in 1997 (Los Angeles, CA) was held for the urgent purpose of bringing together the top experts in the autism clinical research community to establish, for the first time, a consensus statement of the autism “phenotype” and guidelines for a medical work up in autism. The meeting resulted in publication of the Autism Screening and Diagnostic Evaluation, thus providing an incredibly useful initial assessment tool for clinicians at a time when autism was still rarely discussed.1997
Grants Funded by Cure Autism Now
A double-blind placebo-controlled crossover study of the effects of intravenous immunoglobulin (IVIG) in autism
Included: Sudhir Gupta
February 20, 1997
Cure Autism Now | GOOD NEWS. More research money from the National Institutes of Health (NIH)
Included: NIH, NIMH, Dr. Varmus, Dr.Duane Alexander, Marie Bristol, Dr.Steve Hyman, Peter Jenson, Rebecca del Carmen, Judith Cooper
Spring/Summer 1997
Cure Autism Now | Finding a Web of Support via Newsweek
Included: Portia Iversen, Jon Shestack, CAN Foundation
June 1, 1997
Seeking A Cure: Parents & Researchers Dedicate Themselves To Helping Those With Autism
Included: CAN, Jon Shestack, Portia Iversen, Gail Kraska, AOL, ARI, ASA, I-CAN, St. John’s List, AGRE, Ellen Bolte, Ron Bolte, Don Kraska, Rebecca Crow, Warne Crow, Jodi Stepnowski, Frank Stepnowski
”According to CAN, interaction between concerned parents and researchers in the field will help keep motivation high and the pace of progress rapid.”
July 24, 1997
Cure Autism Now: Air Force One movie premiere
“Complete with Hollywood types and floodlights, the Los Angeles movie premier of Air Force One raised $250,000 for Cure Autism Now, or CAN, a foundation set up by Jon Shestack and his wife, Portia Iversen, to raise money and awareness”
“It would be a shame if we didn’t take advantage of a super-generous community,” said Shestack of the entertainment industry. “I think of Air Force One as an $85 million trailer for a CAN benefit.”
July 29, 1997
Cure Autism Now | Autism Fund raising sends local trio to Hollywood premiere
“It was through our work on the golf outing that we connected with Marciarose Shestack of Philadelphia, who became our honorary chairperson,” said Medovich, president of the local group PACT. “Marciarose is the mother of Jonathan Shestack, one of the producers of “Air Force One”, and also the founder of CAN.”
June 29, 1997
Rene Russo was on the Lifetime Channel, in “A Day With…”, and spoke about many things including her involvement with CAN and her support for autism research.
July 1997
Cure Autism Now (CAN) is 19 months old.
CAN has raised over $500,000.
CAN is currently funding pilot studies and think tank sessions.
CAN now has over 8,000 supporters
Fall/Winter 1997
Cure Autism Now (CAN) Funds research in search of answers by Jon Shestack
Included: Ian Lipkin, Richard Sandler, Salvatore DiMauro, Ted Page, Anne Connolly, Michael Chez, Sudhir Gupta, AGRE
“In the past, the autism community has been weakened from within by disagreements between various groups over issues such as aversives, inclusion, diagnostics etc.
“But there is so much more on which we all agree — most importantly, that we must work for a better life for people with autism. If organizations like CAN, ASA, ARI, NAAR, AIA and DDR can work together there is no end to what could be accomplished.”
October 12, 1997
Cure Autism Now | Extra help for kids with autism
Included: ABA, Heidi Rogers, Seaver Autism Research Center, Catherine Maurice,
October 24, 1997
Whose DNA Is It, Anyway? Cure Autism Now
December 21, 1997
Cure Autism Now | PERSPECTIVE ON AUTISM
Included: Jon Shestack, Portia Iversen, Ivar Lovaas, Ricki Robinson , La Canada, Stanley Greenspan
1998
1998
UC Mind Institute founded by Chuck and Sarah Gardner, parents of an Autistic.
And staff: Dr. Leonard Abbeduto
1998
NAAR Autism Tissue Program (ATP)
NAAR was instrumental in funding and establishing the Autism Tissue Program in 1998, a brain tissue donation program dedicated to autism research. NAAR also attracted its first Research Partners and Research Patrons in 1998, which are listed here >>
1998
National Alliance For Autism Research (NAAR)
In 1998, NAAR committed approximately $500,000 in its second year of funding autism research projects and marked the establishment of NAAR’s Mentor-based fellowship program. In 1998, NAAR funded 10 pilot studies and 2 mentor-based fellowships in the United States and Canada.
Included: David G. Amaral, Charles N. Cartwright,, Pam Factor-Litvak, Wendy R. Kates, Yves Lamarre, , Rebecca Landa, Anne Messer, Katherine D. Tsatsanis, Roland D. Ciaranello, Christopher A. Walsh, Patricia M. Whitaker-Amitia, Andrew W. Zimmerman,
1998
Doug Flutie Jr. Foundation is established by parent of an autistic, Doug Flutie.
1998
CAN Celebrity Influencer: Anthony Edwards, star of tv show “ER.”
Since joining CAN’s Honorary Board early last year, Anthony Edwards, star of the hit series “ER,” has shown his commitment to children with autism in so many ways. He traveled to Washington, D.C. to help introduce the Advancement in Pediatric Autism Research Act, took the helm at our ’98 CAN Cup Event in San Francisco, has attended numerous fundraisers and cocktail parties for CAN scientists, and took our mission on-line and raised over $21,000 as part of Entertainment Asylum’s “Hollywood Gives” series.
He also was the force behind a critically important meeting CAN parents and scientists had (on the set of ER) with Senator Frist, Chair of the Senate subcommittee on Health and Human Services. As a result of this meeting Frist has promised to lend his support to increased autism research funding and innovative efforts like AGRE. and All of this, in addition to Anthony’s own incredible $100,000 donation in 1998, has helped to raise substantial funds and invaluable awareness.
Anthony has increased his involvement with CAN by becoming a full member of CAN’s Board of Directors. Anthony’s special project for creating awareness for autism research is the Team CAN Indy Race Car entry.
1998
CAN Board Member, parent, and noted pediatrician Dr. Ricki Robinson gave a featured presentation on autism to President Bill Clinton and Vice-President Al Goreat Vice-President Gore’s 1998 “Family Reunion: Family Empowerment in Healthcare.”
1998
CAN welcomes honorary board member, Leah Rabin.
“Mrs. Rabin has long been a supporter and activist on behalf of people with autism in Israel, and we are thrilled to have her on board. She joins fellow members Maya Angelou, Anthony Edwards, Councilwoman Jackie Goldberg, Congressman Steve Rothman, Congresswoman Marge Roukema, Rene Russo and Donna Williams. “
January 1998
Cure Autism Now Research Funded
Included: Julia Bailey, Stanley Nelson, Martha Herbert, Verne Caviness, Greg Jones, Jeffrey LeWine, Marguerite Molnar, David Amaral, Valerie Stone, Simon Baron-Cohen, James Black, Randy Blakely, Joseph Buxbaum, Gina DelGiudice-Asch, Eric Hollander, Richard Sandler
March 25, 1998
CAN: “Facing Autism 1999” Fundraiser
“Facing Autism 1999” was the theme of a Hillsborough, California fundraiser held on the evening of March 25th.
Thanks to the efforts of co-chairs Merton and Marva Hanks and Nanci and Gary Fredkin, a dedicated event committee, and celebrity supporters including Anthony Edwards, Rene Russo, Jerry Rice, Randal Cunningham and Merton Hanks, over a quarter of a million dollars was raised for CAN’s research, education and outreach programs.
June 20, 1998
Ex- Seattle Mariner Bill Krueger and his wife Jo (parents of Chanel) hosted “A Night for Autism,” a benefit dinner and auction in Seattle. CAN was the grateful recipient of all proceeds — which netted over $75,000.
Summer 1998
Los Angeles, Southern New Jersey, Chicago and Vancouver were all sites for CAN Celebrity Golf Classics held throughout the summer of 1998. These events had the participation of celebrities including Dweezil Zappa, Bill Smitrovich, Matt Adler, Joe Mantegna, Cathy Lee Crosy, Bill Pullman, Jack Scalia, Grant Tinker, Scott Wolf, Ronny Cox and Glen Foley, just to name a few.
July 1998
CAN Co-founder Portia Iversen and CAN Scientific Coordinator Dr. Dan Geschwind traveled to Nice, France to participate in a collaborative autism genetics research group meeting sponsored by P.A.R.I.S., the European consortium working on the genetics of autism.
October 1998
“Building Animal Models for Autism through Translational Neuroscience Research”
CAN, the National Institutes of Health (NIH), and NAAR joined together in October 1998 for a historic event — the first ever animal model workshop in autism.
“Building Animal Models for Autism through Translational Neuroscience Research” brought together world class experts in neuroanatomy, genetics, mouse genetics, primate behavior, brain imaging and developmental biology to formulate a plan for the development of this cutting edge methodology within the field of autism.”
October 18, 1998
Elizabeth Emken/CAN: MOTHER TRIES TO RAISE AWARENESS OF AUTISM
1999
1999
The Autism Coalition (ACRE) is launched by Kevin Murray & 3 other board members.
This parent-founded organization’s goal was to play a critical role to bring autism organizational leaders together to identify common ground, raise funds and public awareness.
First Signs is founded by parent of an autistic, Nancy Wiseman
1999 – 2005
NECC was part of the Autism Coalition For Research & Education (ACRE).
January 6, 1999
H. R. 274: Autism Statistics, Surveillance, Research, and Epidemiology Act of 1999 (ASSURE)
To provide surveillance and research to better understand the prevalence and pattern of autism and other pervasive developmental disabilities so that effective treatment and prevention strategies can be implemented.
February 1999
Unlocking Autism is established by parent of an autistic, Shelley Hendrix.
March 2, 1999
S. 512: Advancement in Pediatric Autism Research Act
To amend the Public Health Service Act to provide for the expansion, intensification, and coordination of the activities of the Department of Health and Human Services with respect to research on autism.
March 4, 1999
H. R. 997: Advancement In Pediatric Autism Research Act
To amend the Public Health Service Act to provide for the expansion, intensification, and coordination of the activities of the National Institutes of Health with respect to research on autism.
March 20, 1999
CAN Conference in Chicago, Illinois
Chicago, Illinois was home to our most recent parent and professional conference. Organized by our dedicated IL CAN chapter, the conference, held on March 20th, brought together parents and professionals from across the midwest to obtain information on the latest in autism treatments and research. Speakers included Dr. Vijendra Singh, Dr. James Black, Dr. Ted Page, Maud Dammann, Dr. Jeffrey Kopelson and Dr. Philip Teitelbaum.
May 21, 1999
An Open Letter To All Families From Jon Shestack, co-founder of CAN
On Wednesday, May 5th, I had the privilege of joining Doug Flutie (star quarterback for the Buffalo Bills and the father of a little boy with autism) and Anthony Edwards (Actor and CAN Honorary Board member) for a trip to Washington, D.C. to help garner support for the autism legislation recently introduced in the House and Senate. …
October 3, 1999
CNN & Time Episodes
CNN & Time explore the possibilities that childhood vaccines are causing some children to become autistic. This hour long show puts public health policy against parental rights.
AUTISM IN THE NEWS
On Sunday, October 3, 1999, at 9pm est, 8pm cst/pac time, CNN will air a story called “A Question of Harm?” which focuses on the family who are behind the”Unlocking Autism” a project to collect 58,000 pictures of autistic individuals to be arranged in a massive display that will debut at an awareness rally next year in Washington, DCNovember 10, 1999
HR 3301: Surveillance And Research Regarding Prevalence And Pattern Of Autism (ASSURE)
To amend the Public Health Service Act to provide for the expansion, intensification, and coordination of the activities of the Department of Health and Human Services with respect to research on autism.
International Badass Activists 