April is traditionally recognized as Autism Awareness Month and April 2 as World or International Autism Awareness Day.
These awareness campaigns are supported and driven by Autism Speaks and their “light it up blue” drives.
Many people will likely be surprised that there isn’t universal support for the “light it up blue” campaign of Autism Speaks to “shine a light on autism” on World Autism Awareness Day. Instead, in addition to the many people who think that April should be more about Autism Acceptance and less about autism awareness, there are many people who think that “Autism Speaks’ statements and actions do damage to that work and to the lives of autistic people and those with other disabilities” because they don’t listen to #AcuallyAutistic people and historically:
- have not included an autistic person among their senior leadership
- have advocated anti-vaccine ideas
- use a very small amount of their budget to directly help autistic people pay for the services and supports that they need
Instead of Autism Speaks, the Thinking Person’s Guide to Autism suggests that people look for an autism group that focuses on support (not a cure), evidence based interventions, inclusiveness, and advocacy for the human and civil rights of all autistic people. And that the focus move to acceptance.
Autism Advocacy Groups
As everyone becomes more aware of autism, they are also becoming more aware of the differences in all of the autism organizations out there. And that some provide bad autism information.
Consider the Chili’s public relations blunder, in which they were planning to donate 10% of sales on April 7, 2014 to the National Autism Association, an anti-vaccine autism organization. That situation highlighted how important it is to know the organization you are supporting and or visiting information and advice.
The organization in question, in addition to promoting unproven autism treatments, like chelation, clearly states that they believe that “vaccinations can trigger or exacerbate autism in some, if not many, children, especially those who are genetically predisposed to immune, autoimmune or inflammatory conditions.” They also state that “research to investigate, and reduce, adverse events in immunized individuals is currently nonexistent.”
The National Autism Association is the same organization that used anti-vaccine talking points to attack Dr. Paul Offit and his appearance on Dateline in an appearance with Matt Lauer that was critical of Andrew Wakefield. And it is the same organization that has tried to defend Andrew Wakefield’s fraud.
While many other autism organizations have distanced themselves from the idea that vaccines cause autism, this group is pressing on with the idea.
Why is that a problem? Keeping the focus on vaccines, after so many studies have shown that there is no link between vaccines and autism, diverts resources away from services and support for children and autistic adults.
Especially with the rise in vaccine-preventable diseases, including large measles outbreaks, it is very disappointing that Chili’s chose this organization to support.
Do you know how to find a reputable autism group that provides good autism information.
Reputable Autism Groups and Organizations
Among the most reputable autism groups and organization are the:
- Autistic Self-Advocacy Network (ASAN) – Our projects seek to improve public understanding of autism, to involve the Autistic community in research that is relevant to the community’s needs, to empower Autistic people to take leading roles in advocacy, and to promote inclusion and self-determination.
- Autism Society of America – Founded in 1965, the Autism Society helps over a million people each year through a grassroots nationwide network of local and state affiliates.
- Autism Women’s Network (AWN) – a supportive community for Autistic women of all ages, our families, friends and allies.
- National Autistic Society – the leading UK charity for autistic people (including those with Asperger syndrome) and their families.
- The Global and Regional Asperger Syndrome Partnership (GRASP) – works to improve and enrich the lives of adolescents and adults on the autism spectrum, and their families through, community advocacy & outreach, education, peer supports, programming and services.
- The Arc and autism NOW – provides high quality resources and information in core areas across the lifespan to individuals with Autism Spectrum Disorders (ASD) and other developmental disabilities, their families, caregivers, and professional in the field.
- Autism Science Foundation – supports autism research by providing funding and other assistance to scientists and organizations conducting, facilitating, publicizing and disseminating autism research.
- Autistica – funds and campaigns for medical research to understand the causes of autism, improve diagnosis, and develop new treatments and interventions
- NOS Magazine – a news and commentary source for thought and analysis about neurodiversity culture and representation.
- Golden Hat Foundation – changing the way people on the autism spectrum are perceived, by shining a light on their abilities and emphasizing their great potential.
- Simons Foundation Autism Research Foundation (SFARI) – sponsors research that promises to increase our scientific understanding of autism spectrum disorders, thereby benefiting individuals and families challenged by these disorders
- Academic Autistic Spectrum Partnership In Research and Education (AASPIRE) – brings together the academic community and the autistic community to develop and perform research projects relevant to the needs of adults on the autism spectrum.
Are you still going to “light it up blue?”
How about checking out these other autism groups instead and learn more about autism acceptance. You might also be interested in these blogs by autistic people.
Last Updated on September 20, 2018 by Vincent Iannelli, MD