Timeline: The Politics & Marketing Behind The Autism Epidemic | The 10s
[Timeline in progress. Last updated: September 8, 2022]
2010 (111th Congress)
H.R. 1205 ABLE Act of 2009
S. 819 Autism Treatment Acceleration Act of 2009
H.R. 2413 Autism Treatment Acceleration Act of 2009
S. 493 ABLE Act of 2009
H.R. 3200 America’s Affordable Health Choices Act of 2009
H.R. 1670 Community Choice Act of 2009
S. 683 Community Choice Act of 2009
H.R. 1707 Helping HANDS for Autism Act of 2009
H.R. 5756 TRAIN Act of 2010
H.R. 1600 To amend title 10, United States Code, to provide for the treatment of autism under TRICARE.
H.R. 4782 Health Care and Education Reconciliation Act of 2010
S. 1373 Federal Research Public Access Act of 2009
H.R. 4147 Keeping All Students Safe Act
S. 1796 America’s Healthy Future Act of 2009
H.R. 3590 Patient Protection & Affordable Care Act
S. 706 Helping HANDS for Autism Act of 2009
H.R.3962 Preservation of Access to Care for Medicare Beneficiaries and Pension Relief Act of 2010
S. 2860 Preventing Harmful Restraint and Seclusion in Schools Act
S. 1796 Affordable Health Choices Act
S. 3800 Department of Defense Appropriations Act, 2011
S. 1169 A bill to amend title 10, United States Code, to provide for the treatment of autism under TRICARE.
S. 3686 Departments of Labor, Health and Human Services, and Education, and Related Agencies Appropriations Act, 2011
S. 4044 Combating Autism Reauthorization Act of 2010
H.R. 3081 Continuing Appropriations Act, 2011
S. 914 Cures Acceleration Network and National Institutes of Health Reauthorization Act of 2009
February 22, 2010
April 12, 2010
Included: Peter Bowman, John Baldacci
April 27, 2010
June 15, 2010
July 23, 2010
Also: New Hampshire Council on Autism Spectrum Disorders, Autism Society of New Hampshire
February 28, 2011
Autistic Women & Non-Binary Network (AWN) founded by Sharon daVanpo
Board/Staff/Contributors: Lydia X. Z. Brown, Emily Paige Ballou, Corina Becker, Jessica Horvath Williams, Lei Wiley-Mydske, Kayley Whalen, Morénike Giwa Onaiwu, Lori Berkowitz, Erin Casey, Jean Winegardner, Court (Alison) Falk, Mara Fritts, Victoria M. Rodríguez-Roldán, Kayla Rodriguez, Elesia Ashkenazy, Amy Sequenzia, Reese Piper, Hannah Morrison, C.L. Bridge, Nadine Silber, Kit Mead
March 4, 2011
March 21, 2011
Also: Autism Society of America, Greater Phoenix Chapter; ASA Pima County and Northern Arizona Chapter; Supporting Autism Now through Education (SANE); Asperger Parent Network; Arizona Autism Coalition; Arizona Autism Support; Southwest Autism Research & Resource Center (SARRC), Recover our Kids (ROK), and the Center for Autism and Related Disorders (CARD), among others.
April 1, 2011
“Certified Behavior Analyst Jill McLaury says 30 years of research show about half of all children get involved in Applied Behavior Analysis therapy, or ABA, early-on in their diagnosis will eventually lose almost all of their symptoms. Another 40% will see at least some improvement.
ABA is not covered by insurance companies in West Virginia.
“It’s just flat discrimination; I mean we just don’t cover autism,” said McLaury.
April 3, 2011
CBS News: Autism Speaks spreads awareness with “Light It Up Blue”
Bob and Suzanne Wright, the founders of Autism Speaks, spoke with Lauren Wanko to discuss World Autism Awareness Day, which shines a bright light on autism as a growing global health crisis.
June 9, 2011
Autism’s new venture capitalists: Laura Slatkin and Ilene Lainer are teaming up with hedge fund giant Jim Simons to create a new resource for people with autism
June 9, 2011
New England Center for Children is mentioned in an article with Laura Slatkin, co-founder of NEXT for Autism and board member for Autism Speaks.
June 13, 2011
Adopted by forty-two states, the U.S. Virgin Islands and the District of Columbia
Stakeholders: content experts, states, teachers, school administrators and parents (Note: Absent is the largest stakeholders for ReThink Autism: Autistic people.)
June 30, 2011
July 21, 2011
Autism Speaks: Autism Votes 100,000 Advocates Strong
August 31, 2011
September 7, 2011
Autism Speaks: Countdown to CARA: On to the Senate!
September 20, 2011
September 30, 2011
Autism Speaks: President Obama Signs CAREA
October 9, 2011
Included: Jim Beall Jr.,Jerry Brown,Gavin Newsom, Don Perata, Darrell Steinberg, Lorri Unumb, Alliance of California Autism Organizations (ACAO), CA Legislative Blue Ribbon Commission, Department of Managed Health Care (DMHC), Autism Speaks, Autism Votes
October 11, 2011
“The only people who don’t think of behavioral therapies as a medical treatment are insurance companies,” said Kristin Jacobson, co-founder of the Alliance of California Autism Organizations and a leading proponent of the new state mandate.
“The rest of the medical community is united in seeing these treatments as medically necessary,” she said.
October 31, 2011
March 15, 2012
Matthew Asner of Autism Speaks
Southern California Executive Director of Autism Speaks, Matthew Asner, sits down with ACT-Today Executive Director, Nancy Alspaugh-Jackson, to discuss his new role at Autism Speaks and his experience as a father of a child with autism.
Skills Live is a production of the Center for Autism and Related Disorders (CARD), headquartered in Tarzana, California, and with offices throughout the United States and around the globe.
March 31, 2012
A new federal study says one-in-88 children has at least some symptoms of autism, many more than previously thought. Bob and Suzanne Wright, who founded Autism Speaks in 2005 after their grandson was diagnosed with the disorder, talked to Rebecca Jarvis about the challenges faced by families with kids with autism. Bob Wright is the former chairman of NBC Universal.
April 18, 2012
April 19, 2012
As the executive director for Community Services for Autistic Adults and Children (CSAAC), I have seen what a difference early intervention can make in the life of a child with autism. Of all of the supports that are provided at CSAAC for children and adults, our early intervention program is the “game-changer.”
With early intervention, fewer children will go to state-funded non-public schools; fewer adolescents will end up in state-funded group homes; fewer adults will need lifelong funding through the Developmental Disabilities Administration; fewer parents of children with autism will end their relationships in divorce; and more children will attain “best outcomes” — profoundly changing their lives and the lives of those around them for the better.
April 28, 2012
the Distance for Autism 2012 in Paramus, NJ with Alpine Learning Group
June 27, 2012
Alaska becomes 31st state to enact autism insurance reform as Governor Parnell returns bill to Legislature without his signature.
August 13, 2012
October 5, 2012
The Âûtistic Union is founded and Autistic-led.
May 23, 2013
October 10, 2013
April 8, 2014
#StopCombatingMe from ASAN
April 2, 2014
Utah enacts autism insurance reform to include ABA: Gary Herbert, Mike Wasmer, Brian Shiozawa, Scott Jenkins, Todd Weiler , Deidre Henderson, Karen Mayne, Howard A. Stephenson, Jon Owen, Ronda Menlove, Kelly Atkinson, Utah Health Insurance Association
Also: Utah Autism Coalition, Utah Health Insurance Association
“ABA • It has been used since the ’60s to help people with autism. Through positive reinforcement, children can acquire basic skills, including looking, listening and imitating, the advocacy group Autism Speaks says.
In some cases • Preschoolers who have intensive therapy can eventually participate in regular classrooms with little extra support. But some show no improvement, so it is hard to predict how much each child will benefit.”
“Autism Speaks joins Utah’s autism community in calling on the legislature to pass S.55 and join the growing majority of states that have ended healthcare discrimination against children with autism.”
“According to reports in The Salt Lake Tribune, the Medicaid program was hindered by low reimbursement rates which limited the number of providers, while the private sector contributions were slow to materialize. In the meantime, it cited 20 cases of parents surrendering their children to the state because they could not afford to provide them the autism treatments they needed.”
April 24, 2014
Also: Autism Society of Nebraska, Autism Family Network
April 25, 2014
Autism Speaks | Licensing Struck Down As Basis For ABA Denials in California
The licensing issue has been raised in a host of states following the enactment of autism insurance reform laws. Implementation of New York state’s 2011 law was delayed for months until lawmakers addressed the issue through new legislation.
“While there can be no doubt that the treatment plan for providing ABA to any autistic child must be established, modified, and supervised by a qualified expert in ABA, the evidence in this case indicates that the actual delivery of services to the child may be performed by a non-expert,” wrote Associate Justice Patti Kitching in the majority opinion.
“It appears that ABA, and similar behavior therapies, are somewhat unique among medical treatments in this respect,” the court found. “While the treatment plan must be created, modified, and supervised by a professional, a paraprofessional may actually deliver the services.”
Autism Speaks argued that unlicensed providers delivered care for years in California abiding by national standards and with no objection from the state, specifically citing the Regional Centers.
“As reflected by SB946, the Legislature has concluded that BCBAs are appropriate and necessary providers to meet these healthcare needs,” according to the brief, which was prepared by Dan Unumb, executive director of the Legal Resource Center.
August 6, 2014
November 15, 2014
Also: Washington Autism Alliance & Advocacy
April 29, 2015
March 19, 2015
Included: Dennis Daugaard, Alan Salano, Corey Brown, Time Rave, Scott Munsterman, Justin Cronin, Brian Gosch, Steve Westra, Gloria Pearson, Marcia Hultman, Scott Ecklund, Charlie Hoffman,
July 13, 2015
March 29, 2016
Bob Wright, Co-founder of Autism Speaks
Former NBC CEO Bob Wright sits down with Matt Lauer to talk about his new book, “The Wright Stuff,” which chronicles his NBC tenure as well as his co-founding of Autism Speaks, an organization to help families dealing with an autism diagnosis, as his has. He also candidly discusses his wife Suzanne’s pancreatic cancer diagnosis. Hoda and Matt Lauer that he’s just too stubborn to die.
March 31, 2016
The Centers for Disease Control and Prevention (CDC) today released its newest estimate of autism prevalence among the nation’s children. The report shows that, overall, less than half the children identified with autism (43 percent) had received comprehensive developmental evaluations by age 3. This proved true despite the fact that the vast majority (87 percent) had developmental concerns noted in their medical or educational records before age 3. Currently, autism can be reliably diagnosed by age 2, with earlier diagnosis affording greater opportunities for intervention that supports healthy development and improves function and quality of life.
In response to these findings, Autism Speaks calls on legislators, public health agencies, the National Institutes of Health and others to join in urgently advancing programs such as universal autism screening for toddlers and enhanced and expanded early intervention services – as well as the personalized medical care, support and resources needed by the growing numbers of people with autism now reaching adulthood.
(Note: Early intervention = early ABA = $$$)
February 15, 2016
May 5, 2016
January 12, 2017
Autistics Against Autism Speaks: A Civil Rights Movement
January 17, 2017
Fashion designer Tommy Hilfiger spoke Monday at the Palm Beach Civic Association about his role on the board of Autism Speaks.
February 5, 2016
February 5, 2016, Donald Trump shares a video message to Suzanne. Trump thanks Suzanne for her years of advocacy at Autism Speaks, and promises to light the White House blue in her honor, for World Autism Awareness Day.
May 11, 2017
with Lilia Luciano
“Nearly half (46 percent) of the ABA-exposed respondents met the diagnostic threshold for PTSD, and extreme levels of severity were recorded in 47 percent of the affected subgroup. Respondents of all ages who were exposed to ABA were 86 percent more likely to meet the PTSD criteria than respondents who were not exposed to ABA. Adults and children both had increased chances (41 and 130 percent, respectively) of meeting the PTSD criteria if they were exposed to ABA. Both adults and children without ABA exposure had a 72 percent chance of reporting no PTSS (see Figure 1). At the time of the study, 41 percent of the caregivers reported using ABA-based interventions.”
“One of many emerging pieces of research, none of which are a surprise, since ABA requires autistic people to mask being autistic. No different to asking a gay person to mask being gay. Not healthy.” – Ann Memmott
“Stressful and traumatic life events should be considered by clinical practitioners when conducting assessments and determining appropriate treatment plans for people with ASD experiencing comorbid symptomatology and or/an exacerbation of core ASD symptoms to help ensure that underlying causes of these symptoms are not overlooked.”
“Research in that one shows that too many behaviourists are not checking for underlying mental health conditions before applying behavioural ‘therapies’ to autistic people. Often also failing to note that the person has PTSD, so thinking it’s just autism causing the ‘behaviours’ and the person is being ‘challenging’.
As many behaviourists are unqualified in autism or mental health conditions, (let alone the highly specialist interplay of autism and PTSD), hardly surprising. There is clear potential for harm.” – Ann Memmott
February 12, 2018
A Study Pointing Out That ABA Doesn’t Work
Published online by Cambridge University Press.
No treatment effects were found for the primary outcome (challenging behaviour over 12 months, adjusted mean difference = −2.14, 95% CI: −8.79, 4.51) or secondary outcomes.
Staff training in PBS, as applied in this study, did not reduce challenging behaviour. Further research should tackle implementation issues and endeavour to identify other interventions that can reduce challenging behaviour.
“Big research study. 3 yrs. 2018… .
Oh dear. Next time someone says ‘gold standard’, refer to the study and ask them what they mean.” – Ann Memmott
May 9, 2018
A Study Pointing Out That ABA Doesn’t Work
There is weak evidence that EIBI may be an effective behavioral treatment for some children with ASD; the strength of the evidence in this review is limited because it mostly comes from small studies that are not of the optimum design. Due to the inclusion of non-randomized studies, there is a high risk of bias and we rated the overall quality of evidence as ‘low’ or ‘very low’ using the GRADE system, meaning further research is very likely to have an important impact on our confidence in the estimate of effect and is likely to change the estimate.
“That one is the Cochrane Review. The ultimate independent audit of whether early-interventions such as Applied Behaviour Analysis (‘ABA’ often now rebranded as Positive Behaviour Support) improve autistic lives.
Conclusion – nope, not proven. Weak evidence of vague improvement after two years of effort, which frankly could be achieved by anyone after two years. Children grow up. They learn skills with or without ABA. This is awkward, isn’t it.” – Ann Memmott
“Results confirm previously reported high rates of suicidality in ASC, and demonstrate that ASC diagnosis, and self-reported autistic traits in the general population are independent risk markers for suicidality. This suggests there are unique factors associated with autism and autistic traits that increase risk of suicidality. Camouflaging and unmet support needs appear to be risk markers for suicidality unique to ASC. “
“The research in that one is worrying, frankly. Cassidy & team noted that if autistic people are having to mask their autism (which most behaviourist approaches teach them to do), their risk of suicide rises. . …Are we normalising autistic children at the later cost of their lives? For whose benefit? I leave the questions there.” – Ann Memmott
August 10, 2018
“The pressure we are put under by Society, by the people in charge, the people we work for and with, our friends, our family; and people who we don’t know and whom will never know us, to act in the way that they insist we do, is immense. Overbearing. Backbreaking.
The price we pay for refusal is greater than the price we pay for doing our damnedest to conform.
Some of us, particularly Autistic people of Colour, particular Autistic people in countries where the view of Autism is archaic, often hateful, pay an even greater price than me every time their Mask slips.
All Autistic people pay for our safety and your comfort with OUR lives.” – Kieran Rose
April 19, 2019
September 19, 2019
November 25, 2019
“In other words, they haven’t been shown to work. It’s not getting better, is it… on we go…” – Ann Memmott
October 25, 2019
“The majority of TRICARE beneficiaries (76 percent – parent form) had little to no change in symptom presentation over the course of 12 months of ABA services, with an additional nine percent demonstrating worsening symptoms.”
“If you are paying for ABA or PBS ‘treatments’ for autistic people, it’s wise to be aware of this type of Government level research showing that you might as well be buying the children a lollipop (generalising). PS, buying a lollipop is not an actual recommendation, to be clear.” – Ann Memmott