Questions and Answers
Autism is complex, and the autism community is diverse and broad. In 2016, we refocused our mission to better serve autistic people. We are dedicated to promoting solutions, across the spectrum and throughout the life span for the needs of individuals with autism and their families. We do this through advocacy and support; increasing understanding and acceptance of people with autism; and advancing research into causes and better interventions for autism spectrum disorder and related conditions. We approach each of our mission objectives with an eye toward making the most meaningful impact for the most people on the autism spectrum.
Our vision is a world where all people with autism can reach their full potential.
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.
Our mission aims to address the spectrum – from those for whom autism may be a great strength, to those who require significant support to remain safe. Research confirms that each person on the autism spectrum is unique, and our goal is to address these diverse needs.
All our mission objectives and work currently underway at Autism Speaks consider this diversity. While we know we can’t be everything to everyone, we remain relentless in our commitment to promoting solutions across the spectrum and throughout the life span.
Here are just some of the ways Autism Speaks is working to help people on the spectrum every day:
- Increasing global understanding and acceptance through education, awareness, and inclusion. We use our platforms to share stories of autistic people across the spectrum and throughout the life span in their own words whenever possible.
- Being a catalyst for life-enhancing research breakthroughs by investing in collaborative, open science that will bring about a future of more personalized treatments and therapies for those on the spectrum. We also fund research with more immediate impact for people who benefit from better treatments of medical conditions that often accompany autism, such as GI issues, sleep disorders, feeding disorders, anxiety, and seizures.
- Increasing early childhood screening and timely intervention with our bilingual public service campaigns aiming to lower the age of diagnosis to help children with autism reach their fullest potential and offering resources to help caregivers better support their child with autism.
- Improving the transition to adulthood for the 70,000+ autistic Americans who age out of school-based supports each year by offering free online resources for transition, employment, education, housing, and community living. We also launched our new inclusive employment initiative (WIN) to build and support inclusive workplaces through a comprehensive suite of resources.
- Ensuring access to reliable information and services throughout the life span by continuing to expand our Autism Response Team’s reach, technical skills, and knowledge to provide more people– particularly in underserved areas and communities – access to resources, information, and support from time of diagnosis through adult life.
Last year alone we aided more than 4.1 million autistic people and their families in a variety of ways. More than 86 cents of every dollar fund our public health and awareness programs, global research efforts, state and federal advocacy initiatives, and program, services, and supports across the lifespan from diagnosis to adulthood. Each year Autism Speaks exceeds the Better Business Bureau guideline of 65 cents per dollar.
Our programs do the most good for the most people. We invest in programs that can have widespread, meaningful impact for the autism community. As an example, we funded advocacy efforts to pass legislation to have autism insurance benefits coverage for 207 million people in 50 states. We are committed to expanding our impact and reach through research, advocacy, 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 provided nearly 2,000 grants totaling $15.2 million to local organizations in every state in 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. Autism Speaks has invested over $35 million over fifteen years to further care through the Autism Care Network and ECHO Autism with a focus on providing quality care in underserved areas.
- ECHO Autism: is an evidence-based model to build knowledge and capacity with local providers and ensuring families have access to quality care in their own 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 events, specials events and all the stakeholder meetings, celebrations and groups that go along with them. 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 ladder up local needs and opportunities. These volunteers partner with local staff who activate their communities across our spectrum of work.
- Local programs: community based educational events and conferences such as stakeholder pipelines and Pathways events, Autism Friendly designated partners, Workplace Inclusion NowTM partners
- Online: In addition to being physically present in local communities, just as important are our free online tools, and information, welcoming social media pages, as well as closed Facebook groups, all that serve as critical resources for the autism community.
Each day, we provide local, regional, and national support that meets you where you are.
Since we were founded in 2005, a lot has changed. At that time, 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 44.
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 can affect the ways in which people learn, think, and problem-solve. Some people with ASD may require significant support in their daily lives, while others may need less support and live entirely independently.
With this broadened definition in mind, in 2016, we refocused our mission to better serve the autism community and to reflect what Autism Speaks represents today. We approach each of our mission objectives with an eye toward making the most meaningful impact for the most people on the autism spectrum.
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. Those expressed by people with autism, as well as those that advocate for autistics who cannot advocate for themselves.
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.
In 2016, the word “cure” was very deliberately removed from our mission statement and the work that we do. Today, Autism Speaks is committed to personalized healthcare, treatments and supports, and helping to ensure the right services, supports and resources are available to people with autism and their families.
“I Am Autism” was a mistake and the video was removed from our channels shortly after it was posted, in 2009. We apologize for the video and the harm it may have caused. Since 2009 we have not shared or distributed the video. We are aware that the video is still being posted and shared today by others as an example of our current campaigns and messaging – which it is not. We ask others to stop sharing the video.
We are focused on supporting autistic people of all levels of need, so that ultimately, they can lead their most meaningful lives - of their choosing. Our public service campaigns and marketing efforts reflect this focus on personal growth and inclusivity.
The puzzle piece has long been a symbol associated with autism, long before Autism Speaks was founded, and it means many different things to different people. For some, we hear it represents hope for increasing our understanding of autism and the many other issues linked with autism like sleep issues, GI issues, anxiety, seizures and more. It may also represent hope for increasing understanding and acceptance in society and hope for people with autism and their families who are experiencing challenges.
Whatever the puzzle piece means to you, we believe that our updated, more colorful puzzle piece, represents inclusivity and optimism as we look toward 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 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 across 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.
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 at inclusivity.
Increasing understanding and acceptance of people with autism is one of Autism Speaks core mission objectives and part of our everyday work. 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.
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. ABA refers to a set of principles based on the science of learning and behavior. Studies of interventions based on Applied Behavior Analysis (ABA) show when implemented properly it can lead to improvements in IQ, adaptive behavior, communication skills, social skills, and a reduction in challenging behaviors. ABA applies researchers’ understanding of how behavior works to real-life situations. ABA programs should be individualized to each person to increase skills or behaviors that are helpful and decrease those that are harmful or hinder learning. It should never be applied simply to “train out” individual differences or personality traits. Positive reinforcement is one of the main strategies in ABA.
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 supports the use of evidence-based interventions. Evidence-based interventions for autism are 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. Unfortunately, there are several interventions that are positioned as “autism treatments” or “cures” that could be potentially harmful or exploitative of resources. Unfortunately, these “treatments” or “cures” 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