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.
- What is Autism Speaks policy of identify-first or person-first language?
- How does Autism Speaks help autistic people?
- What does Autism Speaks fund?
- What does Autism Speaks do in local communities?
- How has Autism Speaks evolved through the years?
- Why did Autism Speaks remove “cure” from its mission and research?
- Why did Autism Speaks remove the “I am Autism” video?
- What is the significance of the puzzle piece logo?
- What is the goal of Autism Speaks funded genetic research?
- What is Autism Speaks position on eugenics?
- How does Autism Speaks represent the autism community within board and staff?
- What is Autism Speaks stance on awareness and acceptance?
- What is Autism Speaks position on ABA (applied behavior analysis)?
- What is Autism Speaks position on vaccines?
- What is Autism Speaks position on autism interventions?
- What is Autism Speaks position on non-evidence-based practices or interventions?
If you have additional questions about Autism Speaks please reach out at email@example.com.
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.
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.
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 eighty-nine cents of every dollar donated to Autism Speaks goes directly to research, advocacy, programs and services. Each year, we have exceeded the Better Business Bureau guideline for charitable credibility and aided more than 1.6 million autistic people and their families through free services and supports.
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.
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.
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.
This video is no way reflective of the Autism Speaks of today. The video was posted in 2009 and removed shortly thereafter. We do not share or distribute it. This video has been a great regret in the history of our organization, and we deeply apologize to those who we offended with it.
Since our founding in 2005, we have worked hard to accurately portray the wide range of experiences one may have with autism, and unfortunately, sometimes we have missed the mark. There are things we did years ago, that due to our deeper understanding of autism today, we would never consider doing now and for that, we apologize.
The puzzle piece originated as a symbol of autism in 1963, when it was developed to raise autism awareness – long before Autism Speaks was founded in 2005. 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 family and friends aas possible. Over the past 18 years, we have continued to evolve as an organization and in 2020 we transitioned from a blue-only puzzle piece to feature a spectrum of colors, representative of the spectrum of experiences those with autism may have.
Whatever the puzzle piece means to you, we believe that our updated, more colorful puzzle piece, represents inclusivity and optimism as we look towards a future of progress for those on the autism spectrum.
Our work in genetics exists to help more autistic people access personalized, precision care that will empower them to lead their best lives.
Over the last two decades, Autism Speaks has made significant investments in the field of autism research and treatment through our genomic initiatives, AGRE and MSSNG. These efforts have allowed the field to utilize whole genome sequencing in autism to unlock DNA secrets and guide new understandings and treatment targets. With the support of our scientific and philanthropic partners, AGRE and MSSNG have made many contributions to the field of autism research.
Autism Speaks does not support eugenics. Our research in the genomics field (via AGRE, MSSNG, and PATH) exists to help advance the field so that ultimately autistic people have access to personalized, precision care that will empower them to lead their best lives.
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. That included employees, consultants and partners who are autistic or otherwise connected to autism. Our network includes autistic individuals as well as caregivers on our Board of Directors, in leadership positions, advisory committees and on the front lines of the services offered through our Autism Response Team.
Adults on the spectrum serve as governing board members and as advisors in our decision-making process for grants, programs, resources, and partnerships. Autistic employees and consultants are central to the development of all major initiatives, including our work to support autistic people in finding, securing, and retaining meaningful employment through our WIN initiative (Workplace Inclusion Now™).
Additionally, the Autism Speaks Community Advisory Council, a group of talented people of diverse backgrounds and identities, was convened in 2020 to advise the organization on strategy, content, and outreach activities.
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.
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.
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.
We know that each person’s experience with autism is uniquely individual and personal, including the resources and supports they may need. Our position is that ABA therapy may not be the most effective option for everyone, though it may be for some. Our Autism Response Team can provide guidance on the various therapy options available for you or your child so that you can make the best decision based on your individual needs.
Evidence of the effectiveness of Applied Behavior Analysis (ABA)
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
Autism Speaks is in agreement with the CDC's position that vaccines do not cause autism. With factual information and transparency at the core of our work, Autism Speaks values discussions that embrace, support and champion the autistic community. We do not support rhetoric built on false information.
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:
- ATN/AIR-P Parent's Guide to Applied Behavior Analysis
- Behavioral Treatment of Autism and Other Developmental Disabilities Fact Sheet (PDF)
- Recommendations of expert panels & government task forces
- Naturalistic Developmental Behavioral Interventions: Empirically Validated Treatments for Autism Spectrum Disorder
- ASHA Practice Policy
- National Standards Project
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
- Electric Shock
- Stem cell therapy