WHAT AUTISM ORGANIZATIONS CAN I TRUST TO GIVE ME GOOD RECOMMENDATIONS OR RESOURCES?
BY MICHAEL JOHN CARLEY
Disclaimer: As a conflict-minded Board member of NEXT for Autism,1 the non-profit behind HBO's Night of Too Many Stars, I'm not including them in the list of recommended organizations. But my involvement with them hopefully communicates at least something of an approval.
If you're a newly-diagnosed person with autism, or the loved one of a newly-diagnosed autistic person, you would think that googling "best autism organizations" is a good way to start your search for resources, services, and – if you're less panicked – meaning (i.e. "What does this diagnosis mean to my life?").
Sigh… The results of such a search will arrive at a myriad of short, well-copyedited pieces, most of which were written in haste – cheerful, peppy haste, but haste nonetheless. The authors of these articles don't tell you the awful histories of the organizations (that for their purposes, they themselves found only on a google search) because they don't take the time to research the organizations and find out. Most national autism organizations that have heinous pasts of euthanasia-like belief systems…they still somehow make it onto those lists. Furthermore, the regrettably still-standing "We swear!... Vaccines cause autism!" organizations also make those lists. Needless to say, it's kind of a crime to be advocating for these organizations, consciously or unconsciously (even if the bigger crime is that these organizations still exist). So, don't trust the internet too much.
The fact also is that if you are new to the world of autism, you will unfortunately have to wade through much more misinformation than you would with other conditions. Celebrity endorsement? Doesn't matter. They sponsored a bill? Doesn't matter. Why is this? Why can't you get straight answers about autism like you would if you googled about a different condition?
I've written about the long answer numerous times,2,3,4 but the short answer—by way of explanation and not justification—is that the autism spectrum is simply more diverse than maybe any other non-apparent disability. It's a condition that includes folks who can be incredibly happy while still never adopting spoken language, holding down a steady job for long, or having reciprocated romantic or sexual relationships. And yet, the likes of Albert Einstein, Emily Dickinson, Beethoven…etc. may have had the very same diagnosis (with spectrumites like me falling somewhere in the middle). With such a disparity of needs, this unique diagnosis maybe demands that we never really be the "community" people often refer to us as. It's too complicated an idea, in addition to being a fascinating diagnosis. Ok. Now that we've made the case why this article, and this type of article, is so needed….
SELECTION CRITERIA
Overall, in this article I'm painfully neglecting many orgs that I know well, and that have good people running them; and that as a result of their omission may never again call me a friend, if not hire me as a speaker. Some just aren't getting it done, some are foreign (to include non-U.S. organizations in this list would have been too exhaustive— so many, many organizations abroad, believe it or not, do great work), some are governmentfunded service organizations (the good ones therein of whom are REAL heroes) and some are niche organizations that one wouldn't go to as a first source for autism info anyway (I think here especially of orgs like GallopNYC,5 that facilitates therapeutic horse riding for people with disabilities, the Wrightslaw Special Education Report,6 or the musical theatrebased Miracle Project7). With this list, we're sticking with primarily educational, advocacy and membership organizations. The organizations you'd contact to get recommendations for these other entities.
Our qualifying characteristics now determined, "best" orgs were chosen by some un-mathematical, gut instinct, mishmash combination of the following four criteria:
1. STABILITY: A PROVEN TRACK RECORD
Needless to say that doing great things over a long haul is proof that you're not just great at the design of your organization, you're great in the implementation as well.
2. ACCURATE AND EMOTIONALLY-HEALTHY INFORMATION
As stated earlier, no organizations should ever be considered for a "best of" list if they've ever entered into "cure" talk, vaccine theory, or used the medical model of disability as an alarmist way to attract attention or raise funds. It's not only scientifically inaccurate, it's mean—to everyone. But it's especially cruel to people on the spectrum. Spouting hysterical rhetoric is also such a treason to so mislead people (mostly parents) who look to you for leadership, and who, in addition to answers, also need you to help them find emotional resolution. These are orgs that pour gasoline on the fires of their constituents, not water. They poisonously led the way before the bipartisanship we see now, encouraging their constituents to be and stay angry, and not to find peace, about a condition that wasn't going anywhere (and that I wouldn't trade for the world).
3. OPERATING COSTS VERSUS PROGRAMS
What percentage of your donation goes to the organization's salaries versus. how much goes to the programs they provide that help people? In fairness, this particular value judgment can't be thought of so simply—many orgs help people directly through their salaried employees. But it's still a litmus test that helps identify those orgs that pay themselves far more than they give back.
4. SPECTRUM LEADERSHIP
(Here's the criteria that's gonna throw even the best of the orgs) How many people on the spectrum are in senior leadership positions? No, not just the mailroom. Not just unpaid "Advisory Board " members or interns. Real, qualified administrators that get the same level of pay of (if not better than) their neurotypical peers, and who outperform these peers because their experiences only add further quality to their opinions.
Twenty years ago, most got their first glimpse of an autistic speaker at "Autreat," (spectrum-run-) Autism Network International's annual retreat. Well, then there were neurotypical heroes like (the now defunct or obscured) MAAP and AHANY, who allowed our folks to speak in front of audiences and to influence Board conversations. For the early 2000s, these allies revolutionized the thinking of "inclusion," by acknowledging a long-fought fact that not everyone on the spectrum was non-verbal. Prior, many families of our more-challenged brothers and sisters wanted cultural ownership over the word "autism" to portray it as tragedy-only. They were overwhelmed not because autism (as they thought, and were told) was bad. They were overwhelmed because they weren't getting the services they needed. Listening to the narratives of people on the spectrum…These then-wonderful 2000s-era measuring instruments of progress, under a 2020 spotlight, are woefully inadequate.
People like me – spectrumfolk who've had educational opportunities – understand the dangers of emotional dysregulation, and who have families of their own who are not "train wrecks" (as I heard one clinician say)… We're not unique any more. We may not be the "probability" we're going to be yet, but we're moving closer, and farther away from "possibility" every day. Under the neurodiverse lens, and encouraged by Diversity & Inclusion ideas, businesses of ALL kinds, not just autism non-profits, can make the relationship with a spectrum employee work. If they have to change their culture in order to onboard that spectrum senior leader? Well, D&I is about rolling up your sleeves, and not hoping everything falls into place by its own. Autism orgs especially need to roll up those sleeves. For what does that say about their autism knowledge if they can't create that inclusive culture in their own office? Would it irk certain autism org administrators to share leadership with a spectrum person, to have to welcome behavioral differences that you are culturally conditioned to disparage…to be paid less than a person on the spectrum? Honestly, put your game face on, folks.
My crystal ball tells me this will be a large, ethical measuring stick in 5-10 years for autism organizations. You see it at conferences every day; where in the post-event evaluations attendees report having learned 10x more from the $250 spectrum speaker than they did from the $5,000 keynote with a clinical background. Well, now there are spectrum clinicians, spectrum executives, etc. Not only are they young people benefitting from better inclusion opportunities throughout their educations, but they are also older executives languishing on LinkedIn, finally realizing as late diagnoses, why things weren't working out the way they'd expected. Because of our behavioral differences, we still retain a high unemployment level (75-85% reported by some). If you're a business or non-profit leader who is reading this, our high unemployment numbers, sadly, are a major opportunity for you. For how can you say you know more about autism than a person who has it? Hopefully, many of y'all found this helpful. When autism hits our lives there's a desperate feeling for short-term answers. But there's also the need for long-term ethical thinking. That goes not just for parents and individuals, but also (if not especially) the organizations entrusted with our care.•
THE WINNERS! : A SELECTION OF RELIABLE AND TRUSTWORTHY AUTISM ORGANIZATIONS
With all that, the autism organizations (in no particular order) that I believe you can trust for reliable and healthy information are…
THE AUTISTIC SELF-ADVOCACY NETWORK (ASAN) autisticadvocacy.org Run by, as well as for, people on the spectrum, ASAN provides accurate and healthy information, and are on top of and respond in a timely fashion to, almost every development occurring in the autism world. I'll admit that they were an often dysregulated, "my way or the highway" handful when I ran GRASP,8 divisively setting spectrum person against spectrum person as a means to promote themselves. But that was a long time ago. And whereas GRASP has all but disappeared since my departure in 2013, ASAN has matured and grown comfortably into the primary voice for people on the spectrum. Under the leadership of Julia Bascom, they became much more strategic in their partnerships, seem infinitely more disciplined in how they accomplish their work, and have truly accelerated what were always their strengths — their brains, policy analysis, and being dedicated to an all-disability inclusive lens. They also lead for the future in their attention to LGBTQ and intersectional approaches.
THE ASPERGER/AUTISM NETWORK (AANE) aane.org Formerly the Asperger Association of New England, this Massachusetts-based regional parents organization often felt like a national organization. Why? Well, they just felt like they didn't have the crises that so many regional organizations have to go through. Under the long-time steady hand of Dania Jekel, their conferences were professional and not scattered, their programs didn't close abruptly, local pros wanted to work with them, and they fundraised successfully with strategy — not prayers. There never seemed an administrative crisis at AANE, and I never heard a complaint from members about their leadership.
AUTISM ASPERGERS SPECTRUM COALITION FOR EDUCATION NETWORKING AND DEVELOPMENT (AASCEND) aascend.org THE ASPERGER/AUTISM NETWORK (AANE) aane.org Formerly the Asperger Association of New England, this Massachusetts-based regional parents organization often felt like a 24 January 2021 • EP Magazine | 2021 EP GUIDE Veering now to a different model of regional organization, AASCEND has been volunteer- and not staff-run for quite some time. When compared to AANE in MA, fledgling local orgs in very conservative states, or any others whose locations dramatically change their needs, the San Francisco-based AACEND caters to a very different community, and does so effectively. Historically, they also had one of the first regional, spectrum-led peer support groups that respectfully said, "Hey, thanks but no thanks" to the support they would have garnered by becoming a GRASP branch (AAGW, the Asperger Association of Greater Washington, was another example of an org that preferred its own autonomy, but that like AASCEND, still collaborated with us in a healthy manner.
THE ORGANIZATION FOR AUTISM RESEARCH (OAR) researchautism.org The only research organization to make this list, OAR easily does so because of their emphasis not only on not painting spectrumfolk as needing to be rescued, but also because almost all of the research they fund helps the living. Most others that focus on autism research look at the medical and genetics aspects. But research on nerve synapses or serotonin levels, while informative, won't help an average working-class family with a child with autism, or an individual on the spectrum, for 25-50 years. Studies on housing, or quality of life…this type of research that OAR engages in, is what helps. Also, OAR and this publication (Exceptional Parent magazine) may be the only autism entities that outside of empty lip service, are truly dedicated to supporting military families who are touched by autism. And finally, OAR has the only scholarship program (the Schwallie Family Scholarship) I know of for students on the spectrum..
SELECT LOCAL CHAPTERS OF THE AUTISM SOCIETY OF AMERICA (ASA) autism-society.org/about-the-autism-society/affiliate-network On this list are well-funded orgs, and orgs that are volunteer-run; national orgs and local orgs. In theory, national orgs will never serve their constituents as well as locals because locals know their local needs better. What locals don't know sometimes are solutions. ASA is the ultimate case study. It has roughly 75 chapters, and these can often have polar opposite value systems from one another, and sometimes even different beliefs from the national office. 10-15 years ago, ASA was even in danger of losing dozens of chapters because the local orgs were opposed to the policies and value systems the national org was demanding they implement. What that situation is like now I do not know. But certainly in my time I remember scads that were wonderful sources for their communities (Hudson Valley, Albuquerque…) and plenty that, frankly, either existed only on ASA's website, or were just flat out, comically ineffective.If this were a truly effective article, I'd know which ones to send you to. But the ones I've come across lately are so ineffective. That said, this was an area where I knew some great chapters exist, yet whom I didn't want to omit from this article because I didn't know of them.
AUTISM WOMEN & NONBINARY NETWORK (AWN) awnnetwork.org Bookending these selections with the two spectrum-run orgs, AWN has grown in every capacity. When Sharon DaVanport founded the org around 2007 or so (Sharon, get a link to your history on the website!), we were just coming into our realization that autism as a "boy's disease" was absolute nonsense. Sharon not only created an org that acted as a safe space for spectrum women, like ASAN she too evolved into an advocate for intersectional and LGBTQ-inclusive practices (no surprise, ASAN and AWN often co-author statements together). AWN also deserves special mention for conducting frequent health care surveys of their members, and then report their findings on their site in many ways — I'm especially impressed by the database resource of spectrum-friendly gynecologists/intimate care providers, and the Trans Autistic Healthcare Guide.
ABOUT THE AUTHOR:
Michael John Carley is the Founder of GRASP, a school consultant, and the author of Asperger's From the Inside-Out (Penguin/Perigee 2008), Unemployed on the Autism Spectrum (Jessica Kingsley Publishers 2016), the upcoming Book of Happy, Positive, and Confident Sex for Adults on the Autism Spectrum… and Beyond!, and the column, "Autism Without Fear," which for four years ran with the Huffington Post. Currently he is the Consultant for Disability Inclusive Culture at New York University, a writer for many, and on Mondays he sees individual clients. For more information on Michael John, or to subscribe to his free newsletter, visit michaeljohncarley.com
References
2. reader.mediawiremobile.com/epmagazine/issues/205999/viewer?page=-1
3. michaeljohncarley.com/images/OverwhelmedII.pdf
4. huffpost.com/entry/autism-without-fear-when-_b_7693472
8. The Global and Regional Asperger Syndrome Partnership, then the world's largest organization for adults diagnosed anywhere on the autism spectrum.