Autism Speaks Does NOT Speak for All Autistic People

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Autism Speaks is the largest, most powerful, Autism Advocacy group in in the country. It raises more than $120 million in donations a year to support their efforts. However, according to their own audited financial statements, in 2014 less than 4% of Autism Speaks’ expenditures actually support autistic people and their families.

Salaries/benefits and associated expenses account for almost 20% of its expenditures, which is typical of their expense breakdown in recent years. In fact, the organization spends almost five times more paying their own staff than providing services to the autistic community.

Ironically, while salaries, benefits, and associated expenses account for such a large portion of its budget, not only is there not a single autistic person on their Board of Directors or in its leadership (some of whom earn salaries in excess of $400,000 a year,) they steadfastly refuse to include any autistic individuals to serve in anything more than token positions within the organization.

Autism Speaks spends less than 4% of its total budget to actually help autistic people and their families.
(Click on graph for larger image.)

Another disturbing fact about Autism Speaks is that while 44% of its budget goes toward research, only a small percentage of its research is focused on improving the quality of life of autistic people. Most of the research that Autism Speaks funds is devoted to causation and “prevention,” including the prospect of prenatal testing.

On top of all that, Autism Speaks uses damaging and offensive fundraising tactics which rely on fear, stereotypes and devaluing the lives of people on the autism spectrum. Autism Speaks’ advertisements and “awareness” campaigns portray autistic adults and children not as full human beings, but as burdens on society that must be eliminated as soon as possible. In fact, its fundraising expenses exceed spending on most of its core programs; more than 20% of its operating budget goes into its fundraising efforts.

Autism Speaks by the Numbers

The numbers don’t lie. Autism Speaks raises a huge amount of money each year, which is not surprising when you consider that they spend more than $50 million a year (almost half of their operating budget!) in their advertising, marketing, and donated media fundraising efforts.

Take a look at the chart of Autism Speaks’ 2014 expenditures to see where their money goes. Most of it’s more than $120 million budget is not spent as you would expect it to be.

Autism Speaks 2014 Operating Expenditure Budget

Alternatives to Autism Speaks

So what can we do about it? While there is a definite need for organizations that advocate for the autistic community, Autism Speaks is not the answer. Your charitable donations will be better spent supporting national and local organizations that actually help autistic people and their families rather than line their own pockets.

Some of the organizations that support autistic individuals on a national level include:

• Autistic Self-Advocacy Network (ASAN): provides support, community, and public policy advocacy, by and for people on the autism spectrum. autisticadvocacy.org
• Autism Network International (ANI): an autistic-run self-help and advocacy organization. Every year ANI hosts Autreat, the autism conference designed to be accessible and welcoming to autistic people. autreat.com
• Autism Society of America: works to increase public awareness about the day-to-day issues faced by people on the spectrum, advocates for appropriate services for individuals across the lifespan, and provides the latest information regarding treatment, education, research and advocacy. autism-society.org
• TASH: this international leader in disability advocacy for more than 35 years has been a leading advocate for human rights and inclusion for people with significant disabilities and support needs – those most vulnerable to segregation, abuse, neglect and institutionalization. tash.org
• The Autism National Committee (AutCom): the only autism advocacy organization dedicated to “Social Justice for All Citizens with Autism” through a shared vision and a commitment to positive approaches. www.autcom.org

Organizations and the support services they provide on the local level depends on the state you live in. The best way to find them is to do a search on Google or other search engine for the term “autism support in [your state].”

Locally, we have a number of excellent organizations that provide a variety of services to the autistic community in Indiana, from social services, to education and training, to advocacy for the rights of the disabled. A few of these include:

• Autism Society of Indiana (ASI): works to raise awareness about autism, to promote early diagnosis and early intervention, and provides front-line support at all stages, from birth through the entire lifespan of someone with autism. www.autismsocietyofindiana.org
• Indiana Resource Center for Autism (IRCA): a part of Indiana University in Bloomington, the IRCA conducts outreach training and consultations, engages in research, and develops and disseminates information on behalf of individuals across the autism spectrum. Their efforts are focused on providing communities, organizations, agencies, and families with the knowledge and skills to support autistic children and adults in typical early intervention, school, community, work, and home settings. www.iidc.indiana.edu/pages/irca
  Download the IRCA brochure. (PDF opens in new window)
• HANDS in Autism® Interdisciplinary Training and Resource Center: provides innovative, research-based, and practical training and technical support to school staff, medical and service providers, primary caregivers, and individuals on the autism spectrum within Indiana. handsinautism.iupui.edu
  Download the HANDS in Autism® brochure. (PDF opens in new window)
• The National Autism Association, Northwest Indiana Chapter: dedicated to bringing hope, support and information to all families in Lake and Porter Counties affected by Autism. They provide a comprehensive list of local-area autism resources, including:
  • Therapy Clinics
  • Biomed Practitioners
  • Chiropractors
  • Accupuncture/Chinese Medicine
  • Where to get a diagnosis
  • Respite Care
  • Financial Help
  • Special Education Advocates
  • Tutors
  • Social Skills Groups/Activities/Camps

  northwestindianaautism.com

• Little Star Center: with applied behavior centers in Carmel, Lafayette and Bloomington, Little Star Center provides ABA therapy for children, teens and young adults on the autism spectrum, as well as home-based ABA services. littlestarcenter.org
• Indy Area Autism – Asperger’s Meetup Group: an online information and discussion group for parents, family members, teachers, therapists and those on the spectrum. www.meetup.com/autism-3/
• Optimal Rhythms / Access Academy: Optimal Rhythms provides Neurologic Music Therapy (NMT,) a research-based treatment approach that uses music and rhythm to change the way the brain functions. Optimal Rhythms utilizes best practice approaches to treatment during their programs.

  Additionally, in August 2014 Optimal Rhythms opened ACCESS Academy, a new private school in Evansville, IN. ACCESS (Assuming Competence Can Ensure Student Success) is a special private day school for students with severe autism. The school’s unique neurologic approach addresses the movement issues associated with autism while always assuming competence. www.optimalrhythms.org

• insights consulting, inc.: an Indianapolis-based agency that supports individuals of all ages who have intellectual and developmental disabilities, traumatic brain injury and autism spectrum disorders, partnering with them, their staff, their friends and their families. They provide music therapy, as well as behavioral, residential, and mental health & wellness support. insightsonline.net