Questions and answers

Autism Speaks is wholly focused on fostering a world in which all people with autism can reach their full potential. It’s this vision that drives the work we do each day. The conversation surrounding autism has evolved in many ways since our founding in 2005. Informed by both advances in research and the lived experiences of autistic individuals, people now know a great deal more about autism and how to best support those who are connected to it.

Recently, the CDC reported an increase in the prevalence of autism from 1 in 44 children to 1 in 36 children, including increased diagnosis in minority communities. This makes our vision feel more important today than ever before, and it’s why we are working towards a world where total acceptance of autistic people – beyond simple awareness - is the societal standard.

Please see below for questions and answers about our work and positions on key topics.

If you have additional questions about Autism Speaks please reach out at connectwithus@autismspeaks.org.

What is Autism Speaks policy on person-first or identity-first language?

Autism Speaks utilizes both identity-first language (autistic person) and person-first (person with autism). In 2019 we polled our community about their preference and heard that there’s no "one-size-fits-all" approach. For that reason, we always recommend respecting individual preferences and using the language that feels most comfortable to the person on the spectrum.

How does Autism Speaks help autistic people?

Autism Speaks is dedicated to creating an inclusive world for all individuals with autism throughout their lifespan. We do this through advocacy, services, supports, research and innovation, and advances in care for autistic individuals and their families.

Here are just some of the ways Autism Speaks is working to help people on the spectrum every day:

  • Ensuring access to reliable​ information and services​ across the lifespan through the Autism Response Team, which offers callers tools and resources based on their individual challenges or questions.
  • Supporting research and innovation​ that drives towards improved​ quality of life and well-being for​ individuals with autism​ throughout their lives.
  • Through advocacy, partnerships​ and collaboration, leveraging our​ assets to support, extend and​ convene the work of service​ providers.
  • Accelerating delivery of solutions for adult quality of life needs, including transition, employment, housing and health and wellness.
  • Living and promoting principles of​ diversity, equity, access and​ inclusion both in and outside​ of the organization.

What does Autism Speaks fund?

90 cents of every dollar funds research, advocacy, programs and services

As a charitable organization, it is important that we are good stewards of our donor funding and support. We pride ourselves on the fact that ninety cents of every dollar donated to Autism Speaks goes directly to research, advocacy, programs and services.

Learn more about Autism Speaks fundraising and spending.

What is Autism Speaks doing in local communities?

Autism Speaks supports individuals and families in communities throughout North America and the impact that we have at the community level is a core part of our mission.

Our support and activities include: 

  • Autism Response Team: a group of trained team members who provide information, referrals, and access to resources. The team is available by phone, email, and chat, in English and in Spanish. 
  • State & Federal Advocacy: our advocacy team works with and for the autism community at the state and federal level to increase supports and services. 
  • Community Grants: Since 2007, we have funded more than $16 million to local organizations across the U.S., to increase services for people with autism. 
  • Autism Care Network: is an innovative learning health system with 20 sites in North America that supports 40,000 patients annually. ACNet connects patients, families, researchers, and healthcare teams to continuously improve whole person and whole family autism care. The network drives rapid and significant effects on quality care, quality of life and reach into underserved communities. 
  • Local events: Autism Speaks hosts and participates in more than 100 in-person events every year. From our signature Walk program that creates community and drives awareness, acceptance and inclusion, to our 5K runs, national marathon involvement, specials events, stakeholder meetings, and educational community outreach, Autism Speaks is active and engaging with new and long-time constituents every day. 
  • Local Leadership: Executive Leadership Councils work in our key markets nationwide providing guidance, direction and feedback to maximize local engagement and address local needs and opportunities. These volunteers partner with local staff who activate their communities across our spectrum of work. 
  • Local programs: Nationwide community based educational events and conferences such as stakeholder pipelines and Pathways events address vital issues around early diagnosis, employment and aging.
  • Online: In addition to being physically present in local communities, just as important are our free online tools and information, welcoming social media platforms, as well as closed Facebook groups, all that serve as critical resources for the autism community.

How has Autism Speaks evolved over the years?

We have evolved as an organization as we learned more about autism and the lived experiences of autistic people. When we were founded in 2005, less was known about autism and the way it impacts people. In fact, in 2005 the prevalence was 1 in 166 and today the prevalence is 1 in 36.

In 2013, the autism “umbrella” widened to encompass several diagnoses, including autistic disorder, Asperger syndrome, childhood disintegrative disorder and pervasive developmental disorder-not otherwise specified (PDD-NOS).

With this broadened definition, the number of people represented by an autism diagnosis expanded considerably, and with this came more perspectives and points of view on what it means to be on the spectrum. 

Autism affects people in many ways and no two experiences are exactly alike. We know that what works for some may not work for others.

We’ve listened carefully to our supporters as well as our critics over the years. We’ve learned a lot – and we’re continuing to learn – about autism spectrum disorder, the evolving needs of the autism community and how we can help. All points of view are important. We are working to ensure the entire community feels heard. From autistic individuals who can advocate for themselves to parents and caregivers advocating for their loved ones, we believe it is our role to see, hear and embrace their stories.

We hope that some of the discord in the community can eventually be replaced with a shared commitment – among all of us who are working to support autistic people and their families – to creating a better world where all people with autism can reach their full potential.

Learn more about the evolution of Autism Speaks.

Why did Autism Speaks remove “cure” from its mission and research?

Since our founding in 2005, we have evolved as an organization as we learned more about autism and the lived experiences of autistic people. It was the right decision to remove searching for a “cure” from our mission and instead focus on providing advocacy and support, increasing understanding and acceptance and advancing research for the autistic community.

Learn more on our position around finding a cure for autism.

Why we removed the “I am Autism” video from our channels

The "I Am Autism" video was posted in 2009 and quickly redacted. This video has been a great regret in the history of our organization, and we deeply apologize to those who we offended with it.

Learn more about the video here.

What is the significance of the puzzle piece logo?

The puzzle piece originated 1963 when it was developed to raise autism awareness. While it is something we still use today, we regularly seek feedback and input from those within the autistic community to make sure Autism Speaks is reflective of the widest range of autistic individuals and their families and friends as possible. 

Whatever the puzzle piece means to you, we believe that our updated, more colorful puzzle piece represents inclusivity and optimism.

Learn more about the autism puzzle piece logo.

What is the goal of Autism Speaks funded genetic research?

Our work in genetics exists to help more autistic people access personalized, precision care that will empower them to lead their best lives.

Learn more about Autism Speaks research and eugenics.

What is Autism Speaks position on eugenics?

Autism Speaks does not support eugenics. 

How does Autism Speaks represent the autism community within board and staff?

We employ and engage autistic people, parents, and family members of people with autism as well as professionals and representatives who have experience and knowledge of autism. Some choose to disclose their autism while others do not. Their voices are represented across all staff and volunteer levels within Autism Speaks, including our board.

Because we want to represent the breadth of the spectrum and diversity of experiences with autism, it’s important to remember that some people with autism are unable to advocate for themselves, while others can do so easily. We work diligently to ensure all voices are heard and strive to meet the many and diverse needs of autism communities. 

We continue to identify new opportunities throughout the organization and our DEAI efforts (Diversity, Equity, Access, Inclusion) reflect our evolving efforts to promote these principles in all actions and partnerships.

Learn more about autistic representation at Autism Speaks.

What is Autism Speaks stance on awareness and acceptance?

At Autism Speaks, we are working towards a world where total acceptance of autistic people – beyond simple awareness - is the societal standard. We believe that awareness and acceptance are both crucial to building a better world for people on the spectrum, no matter their age, level of need or unique identity, as well as to fostering inclusion.

While we fully support and work for acceptance, it cannot necessarily replace awareness. Universal awareness of autism does not exist globally or even in the United States.

What is Autism Speaks stance on ABA (applied behavior analysis)?

Applied behavior analysis (ABA) and therapies based on it, are evidence based and the most common behavioral interventions for autism.

Studies show when implemented properly, ABA can lead to improvements in IQ, adaptive behavior, communication skills, social skills, and a reduction in challenging behaviors. ABA programs should be individualized to each person and are not a one-size-fits-all approach. Most importantly, ABA programs should not be designed to enforce or require behaviors based on social norms. Instead, the goals should be to help each person work on skills that will allow them to become more independent and successful in the short-term as well as in the future. When deciding individualized goals, the individual in ABA therapy should be involved in selecting the goals.  

Learn more about ABA and other therapies.

Evidence of the effectiveness of Applied Behavior Analysis (ABA)

LeBlanc, L. A., & Gillis, J. (2012). Behavioral interventions for children with autism spectrum disorders. Pediatric Clinics of North America, 59, 147-164.

Schreibman, L., Dawson, G., Stahmer, A., Landa, R., Rogers, S., McGee, G., Kasari, C., Ingersoll, B., Kaiser, A., Bruinsma, Y., McNerney, E., Wetherby, A., & Halladay, A. (2015). Naturalistic Developmental Behavioral Interventions: Empirically Validated Treatments for Autism

Spectrum Disorder. Journal of Autism and Developmental Disorders, 45(8), 2411-2428.

What is Autism Speaks position on vaccines?

Scientists have conducted extensive research over the last two decades to determine there is no link between childhood vaccinations and autism. The result of this research is clear: Vaccines do not cause autism.

What is Autism Speaks position on autism interventions?

Autism Speaks supports the use of evidence-based interventions  or treatments that have been carefully researched and show consistent expected outcomes based on empirical data. Evidence-based interventions for autism provide the best opportunity for positive outcomes.

Links for reference:

What is Autism Speaks position on non-evidence-based practices or interventions?

Autism Speaks does not support non-evidence-based practices or interventions.  They could be potentially harmful or exploitative of resources. Unfortunately, these “treatments” are easy to find on the internet and sometimes specifically target newly diagnosed families.

These may include:

  • Bleach cures
  • Hyperbaric chambers
  • Aversion Therapy
  • Chelation
  • Biofeedback
  • Supplements
  • Electric Shock
  • Stem cell therapy