Categories
autism speaks Autistic Activists & Advocates Autistic History bob wright Divergent News eve reiland suzanne wright

Deconstruction | Autism Speaks PR: Autism Advocacy Community Applauds U.S. Congresswomen for Introducing the Combating Autism Act of 2005 

“Deconstruction of the Autism Speaks Press Releases” is a new series I’m starting in honor of “the month,” April 2021.

Each article in this series will take an Autism Speaks press release from the archives dated back to 2005 and use my Autistic perspective to break it down and illustrate the patterns I notice. These articles will be tagged “Deconstruction of Autism Speaks” and added to the Autistic History archives.

Each article in this series will take an Autism Speaks press release from the archives dated back to 2005 and use my Autistic perspective to break it down and illustrate the patterns I notice. These articles will be added to the Autistic History archives.

The first deconstruction piece I wrote was about Tommy Hilfiger’s adaptive fashion line and how it was steeped in ableism. I received a lot of incredible feedback about that article and it has helped many see the ableism in the marketing there now. The structure for this series will be slightly different from that one.

The summary will be at the start, then the break down of the press release with my observations, and then the comparison table of what they say versus what I see.

With this series, it’s my hope to illustrate the power, the monopoly and the silencing of Autistics that Autism Speaks and many other parent-led organizations have participated in over the last few decades, and to ultimately shine a brighter light on the harm they’ve caused Autistic people over the years.

Autistically,

Eve Reiland


Press Release: Autism Advocacy Community Applauds U.S. Congresswomen Mary Bono (R-CA) and Diana DeGette (D-CO) for Introducing the Combating Autism Act of 2005 

(May 19, 2005)

Summary

Autism Speaks is applauding congresspeople for introducing the Combating Autism Act of 2005.

There’s not a single Autistic person mentioned in the entire press release as being involved in helping to pass the legislation.

Also, the autism organizations that participated in getting this legislation passed – Autism Speaks, Cure Autism Now (CAN), National Alliance for Autism Research (NAAR) – definitely didn’t include any Autistics in leadership positions.

The Autistic Community, and the disabled community, have a motto: Nothing About Us Without Us. The “Autism Speaks Initiative” and the legislation, “Combating Autism Act 2005,” failed to include Autistic people in a meaningful manner. The influencers from these organizations are not Autistic allies and aren’t connected to the Autistic Community.

Examples

Person First Language (PFL): A parent of a child with Autism.

Identify First Language (IFL): A parent of an Autistic child.

The first clue in the press release that this organization is parent-led or professional-led is the Person First Language (PFL) used. PFL describes Autistics as people with Autism. This is not the language style used by the Autistic community. Our culture used Identity First Language (IFL). We identify as Autistic people, Autistic culture, Autistic community, and we even have Autistic humor.

These parent-led organizations, consisting of and operated by parents and professionals, created the “Autism community.” This community is comprised of mostly non-Autistic people.

The Autistic community is a vastly different group of people. It is comprised of Autistics of all ages worldwide. The Autistic community uses Identity First Language (IFL). We are Autistic. Organizations connected to the Autistic community show respect to our culture by using IFL.

The press release uses the medical model deficit description of autism. The words cure, treatment and prevention are speaking to eugenics (this is the prevention of birth for Autistics based on “autism risk”), Applied Behavioral Analysis (ABA), and other therapies.

Autistic people have fought the inclusion of ABA in therapy for us since Autism Speaks, and other non-Autistic-led autism organizations, started lobbying legislation to get it covered by insurances and Medicaid. ABA is a myth sold to parents of Autistics that with early intervention therapy, their child will either be less Autistic or no longer Autistic and can be mainstreamed into typical classes by elementary school. This is only possible with early intervention with a recommendation of 40 hours per week.

ABA is conversion therapy and has even been compared to a bad, and abusive form of dog training. The study about ABA having a success rate up to 50% of Autistics being less Autistic, or no longer Autistic, by elementary school has never been replicated. ABA has been shown to cause PTSD and other lifelong trauma-related conditions in Autistics. Autistic abuse is not well recognized by non-Autistic people. Historically, the autism organizations promoting this therapy as a cure have silenced Autistic advocates opposition.

The Autism Speaks press release uses tragedy narrative, fear and violence narrative and promotes autism myths. It ignores the Autistic community to instead highlight the Autism community.

It also includes dangerous influencers: Bob Wright, Suzanne Wright, and Johnathan Shestack, It also begins to display the vast reach of the Autism Speaks Influence network with celebrities, media moguls, research persuasion, government entities, politicians, professionals and more.


Quote:

WASHINGTON, May 19 — Landmark legislation that would significantly increase and expand the federal government’s response to autism, a developmental disorder that affects a person’s ability to communicate and relate to others and that now affects as many as one of every 166 children in America, was introduced yesterday by U.S. Congresswoman Mary Bono (R-CA), the lead sponsor of the House bill and U.S. Congresswoman Diana DeGette (D-CO), the original co-sponsor of the bill. The Combating Autism Act of 2005 (HR 2421) would authorize significant federal funds annually over the next five years to combat autism through epidemiological research, screening, intervention and education efforts. 

“Autism is the fastest growing developmental disability in our nation,” said Congresswoman Bono. “Fortunately, the medical community is responding by increasing their efforts to effectively diagnose, treat and cure this disorder. Currently, both the cause and cure are unknown, often leaving families with feelings of frustration and hopelessness. The goal of this legislation is to support the medical community by augmenting current federal efforts by reauthorizing federal funding and allowing for better coordination of the federal response to autism,” added Bono.

The Breakdown

  • Legislation: Combating Autism Act of 2005 (HR 2421)
  • Influencers: Congressperson Diana DeGette (D-CO), Congressperson Mary Bono (R-CA)
  • Autism prevalence included
  • Refers to Autism Community, Medical Community
  • Language: combat, treat, cure
  • Quote speaks to families and medical community
  • Mentions federal response to Autism


Quote:

“The legislation introduced today will cut across federal agency lines to more effectively fund autism epidemiological research and expand autism treatment and early diagnosis. It is truly the result of the autism community pulling together to focus the nation’s attention on this public health crisis,” said Jonathan Shestack, co-founder of Cure Autism Now. “In addition to the leadership of Congresswomen Bono and DeGette, we have been working with U.S. Congressmen Christopher Smith (R-NJ) and Mike Doyle (D-PA), the House Autism Caucus Co-Chairman, encouraging them to seek the early endorsement of this bill by the nearly 200 members of the House Autism Caucus. Passage of this legislation is critical as the incidence of autism continues to rise.”

The Breakdown

  • Refers to “Autism Community”
  • Refers to public health crisis
  • Includes quote from Jonathan Shestack, co-founder of Cure Autism Now (CAN)
  • Includes leadership and influencers: Christopher Smith (R-NJ), Congressperson Mike Doyle (D-PA), House Autism Caucus Co-Chairman
  • Refers to Autism prevalence
  • Refers to 200 members of the House of Autism Caucus.
  • Quote by parent and co-founder of CAN.


Quote:

“Right now, autism is a disorder that leaves families with far too many questions and far too few answers. While the medical community has made important steps in addressing this disorder, there is still much more to be done,” said Rep. DeGette. “That is why it is so critical that we put the full weight of the federal government’s scientific resources behind efforts to develop better ways to diagnose, treat and hopefully cure autism.” When the Children’s Health Act, the first federal legislation addressing autism, was passed in 2000, the Centers for Disease Control (CDC) stated the prevalence of autism at 1 in 500 children in the United States. In 2004, the CDC revised that figure to as many as 1 in 166.

The Breakdown

  • Mentions Autism mystery
  • Mentions medical community
  • Mentions federal government
  • Mentions Legislation Children’s Health Act 2000
  • Mentions Centers for Disease Control (CDC)
  • Mentions Autism prevalence
  • Quote by legislator

Quote:

“We are thrilled to see Congresswomen Bono and DeGette spearheading this critical endeavor in support of families of children with autism. The Combating Autism Act of 2005 will have a striking impact on the autism community,” said Bob Wright, vice chairman, General Electric, and chairman and CEO of NBC Universal and co-founder of Autism Speaks, a new initiative devoted to education, funding, research and motivating private and governmental resources. “As the grandparents of a child diagnosed with autism just last year, my wife, Suzanne, and I — along with the rest of the highly dedicated autism community — are committed to seeing that this legislation is enacted.”

The Breakdown

  • Mentions legislators Bono, DeGette
  • Speaks to families of children with autism
  • Legislation: Combating Autism Act of 2005
  • Quote by co-founder of Autism Speaks, Bob Wright
  • Mentions General Electric and NBC Universal
  • States Autism Speaks is a new initiative focused on education, funding, research, and motivating private and governmental resources
  • Grandparent of an Autistic
  • Mentions Suzanne Wright
  • Mentions Autism Community
  • States commitment to legislation being enacted.

Quote:

The Combating Autism Act of 2005 would provide grant programs for every state to develop autism screening, early diagnosis and intervention programs for children – perhaps the most important thing that could happen, short of a cure. The Act also increases funds for CDC epidemiological surveillance programs, and reauthorizes the Interagency Autism Coordinating Committee (IACC), established in the Children’s Health Act of 2000, to coordinate all efforts within the Department of Health and Human Services concerning autism, including activities carried out through the CDC.

The introduction of the Combating Autism Act of 2005 could not have happened without the hundreds of thousands of active parents and concerned Americans around the country.

The Breakdown

  • Combatting Autism Act of 2005: provide grant programs, early diagnosis and intervention programs for children
  • Mentions cure
  • CDC funds increased by act for epidemiological surveillance programs
  • Act reauthorizes the Interagency Autism Coordinating Committee (IACC)
  • Children’s Health Act of. 2000 established IACC
  • Refers to parents and concerned citizens


Quote:

“Unraveling the mysteries of autism demands a large, collaborative effort on many fronts,” said Prisca Chen Marvin, board chair of the National Alliance for Autism Research (NAAR) and the mother of a child with autism. “This legislation is critical to our ability to continue advancing our search for answers — for children and families today and for future generations.”

The Breakdown

  • Mystery of autism
  • Prisca Chen Marvin, board chair of NAAR
  • Parent of Autistic
  • Seeking answers for children and families today
  • Seeking answers for future generations

Quote:

About Autism 

Autism is a neuro-developmental disorder that now affects as many as 1 in every 166 children in the United States. Autism is commonly diagnosed by the age of three, and in some cases, as early as one year. Characterized by varying degrees of impairment in communication skills, social interactions, and restricted, repetitive and stereotyped patterns of behavior, children with autism can exhibit symptoms that run mild to severe with widely differing symptom profiles.

The Breakdown

  • Combatting Autism Act of 2005: provide grant programs, early diagnosis and intervention programs for children
  • Mentions cure
  • CDC funds increased by act for epidemiological surveillance programs
  • Act reauthorizes the Interagency Autism Coordinating Committee (IACC)
  • Children’s Health Act of. 2000 established IACC
  • Refers to parents and concerned citizens

Quote:

About Cure Autism Now 

The Cure Autism Now Foundation is a nonprofit organization dedicated to promoting and funding autism research, and accelerating the pace of scientific progress toward effective treatments and a cure. Cure Autism Now is one of the largest private funders of biological research on autism, providing more than $24 million for research grants, outreach and scientific resources since its inception in 1995. During that time, it has established and supported the Autism Genetic Resource Exchange (AGRE), as well as numerous outreach and awareness initiatives aimed at families, physicians, governmental officials and the general public. More information about Cure Autism Now can be found at http://www.cureautismnow.org/

The Breakdown

  • Refers to “Autism Community”
  • Refers to public health crisis
  • Includes quote from Jonathan Shestack, co-founder of Cure Autism Now (CAN)
  • Includes leadership and influencers: Christopher Smith (R-NJ), Congressperson Mike Doyle (D-PA), House Autism Caucus Co-Chairman
  • Refers to Autism prevalence
  • Refers to 200 members of the House of Autism Caucus
  • Quote by parent and co-founder of CAN.

Quote:

About Autism Speaks 

Autism Speaks is a new initiative devoted to educating the public about autism, facilitating and funding research, motivating private and governmental resources, and, ultimately, finding a cure for autism. Co-founded by Bob Wright, Vice Chairman of GE, and Chairman and CEO of NBC Universal, and his wife, Suzanne, Autism Speaks recognizes the importance of a coordinated effort to investigate the causes of autism, develop effective treatments, and ultimately find a cure. ( Watch video of Bob Wright’s speech at Introduction of Combating Autism Act of 2005.)

The Breakdown

  • About Autism Speaks bio
  • Autism Speaks described as a new indicative to educate public, facilitate and fund research, motivate private and governmental resources and find a cure for autism.
  • Co-founder Bob Wright, mentions background with GE and NBC Universal
  • Grandparent of an Autistic
  • Mentions Suzanne Wright
  • Autism Speaks is stated to recognize the importance of a coordinated effort to find causes, develop treatments, and fin da cure
  • Mentions video available to watch of Wright’s speech


Quote:

About the National Alliance for Autism Research 

Established in 1994, the National Alliance for Autism Research (NAAR) is the first nonprofit organization in the country dedicated to funding and accelerating biomedical research for autism spectrum disorders. The organization was established by parents of children with autism, concerned about the limited amount of funding for autism research. To date, NAAR has committed $21.1 million in grants for biomedical research projects worldwide that seek to find the causes, prevention, effective treatments and, ultimately, cure for autism spectrum disorders. Additionally, NAAR was instrumental in establishing the Autism Tissue Program, a parent-led brain tissue donation program for autism research. More information about NAAR can be found at http://www.naar.org/ .

The Breakdown

  • Mentions mystery of autism
  • Prisca Chen Marvin, board chair of NAAR
  • Parent of Autistic
  • Seeking answers for children and families today
  • Seeking answers for future generations


Comparison Table

What They SayWhat I See
Legislation & Initiatives
Combating Autism Act of 2005 (HR 2421)
– Focused on providing grant programs, early diagnosis and intervention programs for children
– Interagency Autism Coordinating Committee (IACC) reauthorized

– The Children’s Health Act 2000
– Established IACC

– Autism Speaks: A new initiative
– Focused on education
– Funding
– Research
– Motivating private and governmental resources






Combating Autism Act of 2005 (HR 2421)
– Grants
– Early diagnosis myth
– Intervention programs (ABA)
– IACC reauthorized



-The Children’s Health Act 2000
– Established IACC

– Autism Speaks
– Parent-led organization
– Cure/eugenics focus
– Treatment/recovery focus
– Research dictated by Autism Speaks board
– Fundraising to support parent-led research goals
– Lobbying for legislation parents determine necessary


Influencers/Influenced
– House of Autism Caucus
– 200 members

– Congressperson Diana DeGette (D-CO)

– Congressperson Mary Bono (R-CA)

Congressperson Christopher Smith (R-NJ)

– Congressperson Mike Doyle (D-PA),
– House Autism Caucus Co-Chairman

Center for Disease Control (CDC)
– CDC funds increased by Combatting Autism Act 2005.
– Funds for epidemiological surveillance programs

Jonathan Shestack, co-founder of Cure Autism Now (CAN)
Parent of an Autistic








Bob Wright, co-founder of Autism Speaks
– Vice Chairman of General Electric (GE)
– CEO NBC Universal
Grandparent of an Autistic




Suzanne Wright, co-founder of Autism Speaks
Grandparent of an Autistic






Prisca Chen Marvin, board chair of National Alliance Autism Research (NAAR)
Parent of Autistic


– House of Autism Caucus
– 200 non-Autistic members

Congressperson Diana DeGette (D-CO), Non-Autistic

– Congressperson Mary Bono (R-CA), Non-Autistic

Congressperson Christopher Smith (R-NJ), Non-Autistic

– Congressperson Mike Doyle (D-PA)
– House Autism Caucus Co-Chairman, Non-Autistic

– Center for Disease Control (CDC)
– Autism Speaks has influence on CDC
– Autistics don’t have influence on CDC

– Jonathan – Jonathan Shestack, co-founder of Cure Autism Now (CAN)
– Non-Autistic parent of an Autistic
– Not an Autistic Ally
– Dangerous influencer
– Silences and/or speaks over Autistic advocates and Autistic people.

– Bob Wright, co-founder of Autism Speaks.
– Non-Autistic grandparent of an Autistic
– Not an Autistic Ally
– Dangerous Influencer
– Silences/and or speaks over Autistic advocates and Autistic people.

– Suzanne Wright, co-founder of Autism Speaks
– Non-Autistic Grandparent of an Autistic
– Dangerous Influencer
– Silences/and or speaks over Autistic Advocates and Autistic People

– Prisca Chen Marvin, board chair of NAAR
– Non-Autistic parent of an Autistic

Target/Demographic

– Parents of Autistics
– Grandparents of an Autistic
– Loved ones of an Autistic
– Professionals
– Concerned US citizens
– Potential donors


– Doesn’t include Autistics
– Doesn’t include Autistic Parents of Autistics
– Doesn’t include Autistic Community
– Doesn’t include Autistic professionals
Marketing & Language Used
– Person First Language (PFL)

– Autism Community
– Medical Community
– Federal Government

– Autism Prevalence
– Combat, treat, cure
– Public health crisis

– Mystery of Autism

– Autistic Culture uses Identity First Language (IFL)

– Doesn’t include Autistic people
– Doesn’t include Autistic Community
– Doesn’t include Autistic Culture

– Tragedy Narrative
– Fear/Violence Narrative
– Cure/Eugenics language

– Autism Myth

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.