4 Great Autism Advocacy Groups to Support
I’ve talked before about why a lot of the autistic community doesn’t accept Autism Speaks.
So now I’m sure you’re wondering what advocacy groups can you support with a clear conscience? Which organizations are doing real work to actually improve the lives of autistic people?
Good news! There are several good organizations, each with their particular focus. Here are four great autism advocacy groups you can support.
Autistic Self Advocacy Network
The Autistic Self Advocacy Network (ASAN) was founded in 2006 by autistics, for autistics. They are the originators of the call for autistic voices in policy debates: “nothing about us without us”. ASAN’s mission, aside from including autistic people in decisions that affect them, includes improving public perceptions of autism and working to gain equal access, rights, and opportunities for autistics. They offer toolkits explaining various topics, including employment policy, healthcare, transition services, and more. ASAN has several autistic people on its Board of Trustees including at least one nonverbal member. I highly suggest you click that link and scroll down to read Cal Montgomery’s bio – he sounds awesome and I want to meet him! Scholarship memberships are available for low-income people on the spectrum, paid memberships start at $35, or you can choose your own amount.
ASAN does a TON of policy work, but it’s not 100% autism-related. A lot of broader policy discussions that affect autistic people are focused on other intellectual and developmental disabilities or “disability” as a generic term. Therefore, ASAN’s work covers just about every disability there is. In my opinion, that doesn’t lessen the good that they do for the autistic community, and they are definitely my number one pick for support. But if it’s important to you that you’re supporting an organization that only works for people on the spectrum, you might prefer one of the other options here.
Autism Society of America
Since 1965, the Autism Society of America has been working to help autistic people achieve the highest quality of life. Their policy work includes a focus on the lack of accessible adult and transitional services. They support efforts that allow for self-determination and individual choice, and they promote an options policy which allows autistic people and their families to choose the programs, therapies, or supports that are the best fit for themselves. The Autism Society is governed by a volunteer Board of Directors, which includes many parents of autistic people; a Panel of Professional Advisors, which is largely comprised of researchers and other experts, but includes Dr. Temple Grandin in a kind of dual capacity; and a Panel of People on the Spectrum of Autism Advisors, which has a terribly clunky name but is definitely a great idea.
The Autism Society offers real help to autistic people and their families through their National Contact Center Help Line, 800-3-AUTISM (800-328-8476). Monday through Friday, 9 am to 9 pm ET, trained staff are available to help callers find resources, services, therapy options, or support groups. They also offer an online resource database at autismsource.org.
Although it’s a national organization, the activities of the Autism Society are mostly run through independent state and local affiliate groups. That’s great because all money raised by each group stays in the community it serves and they can tailor their work to what their community needs. However, affiliate groups can be really hard to find. I live in the third largest city in Louisiana, but there’s nothing here. I would supposedly be served by the state affiliate in Baton Rouge – about 250 miles away. There are just no groups in the northern two-thirds of this state. In some states, there are no groups at all. I’m sure there’s a way to start a group in your community, but I couldn’t find that information on their website. Still, the Autism Society does very good work and has been doing it longer than any organization in the country, so I think they’re worth supporting even if you don’t have access to an affiliate group.
In 1996, shortly after Asperger’s Syndrome was added to the DSM-IV, the Asperger’s Association of New England was founded to provide education, referrals, and support for those with Asperger’s and the professionals working with them. In 2014, the group changed their name to the Asperger/Autism Network (keeping the abbreviation AANE) in response to the DSM-V removing Asperger’s as a distinct diagnosis.
AANE uses the term “Asperger profile” a lot – they don’t like “syndrome”. They focus largely on the abilities of people on the spectrum, and on how best to support those people to lead full, meaningful lives. While they don’t go into details on their website, they state that their Board of Directors includes Asperger’s adults, family members, and professionals.
To me, the most amazing thing about AANE is the number of services and help they offer for low support needs people (those of us who might otherwise be called “high functioning”), especially adults. Their LifeMAP coaching program covers everything from teens to college to job interviews and work to life after 50, creating a personalized plan using each person’s strengths to overcome their unique challenges. They work on organization, time management, social skills – it sounds like exactly what I need! Relationship coaching for neurodiverse couples is available by phone or video conference. In some places, they have regular social events, book clubs, and more. They also have programs to help autistic adults live independently.
The downside to AANE is that they’re pretty much confined to New England, specifically Massachusetts. All those support groups, social meetups, book clubs, etc., are limited to that area. There are a few certified LifeMAP coaches scattered around the country, but they’re few and far between, and their site says they prefer not to do long-distance coaching. All that being said, AANE offers a lot of resources for adults and less impaired autistics online. Personally, I think their focus on adults and on those of us who are “not disabled enough” to qualify for most state services is enough to make them worth supporting.
Autistic Women and Nonbinary Network
A smaller organization, the Autistic Women and Nonbinary Network (AWN Network) is currently updating from its former name, the Autism Women’s Network. As another group created by and for autistics, their focus is to maintain a space in the autistic community for women and girls, who are less frequently diagnosed, as well as any other marginalized genders. They don’t do a lot in the way of policy advocacy, but they focus on allowing autistic women and others to tell their own stories in their own words, which is necessary if everyone on the spectrum is to be accepted for who they are. AWN Network is very welcoming, especially as an adult woman just getting diagnosed. They even have a database of intimate healthcare providers who address the concerns of autistic women. It’s probably the most woke autistic organization in America, and it’s a great group for anyone who may feel overlooked in the largely male-oriented autistic conversation, or anyone seeking some intersectionality in their autistic self-advocacy.
These are my top four picks for autism advocacy groups to support, but there are many others. I haven’t even looked into any international organizations, but I know there are plenty. If you know of any other groups that are doing great work, tell me about them in the comments!
Have you worked with any of these groups? Do you have any personal experience with any of their programs? Do you think I’m wrong about any of them?