by Michael John Carley
In less than a month, the Autism Society of America’s (ASA) members will convene in Milwaukee after having survived the same surprising, bitter year that all Americans have endured.
Republicans have kids with autism just as frequently as Democrats, and Democrats have autism diagnoses just as frequently as Republicans. So back when I was the Executive Director of two autism non-profits in NY, I benefitted from how ideologically-inclusive my terrain was. Other orgs that focused on reproductive rights (perceived left), or who pushed for religious influence in public schools (right-wing)…these 501(c)3s had half the pool of donors I had. Even the most ardent fiscal conservatives dared not…to go after government funding of autism services or research.
How the world has changed. And how paralyzed the autism orgs seemed when their constituents needed a hero.
On the semi-eve of ASA’s annual conference, its members may want to engage staff in a dialogue about whether or not its commitment to advocacy needs to be significantly beefed up, or whether it needs to abandon the pretense of advocacy, in the hopes of greater transparency.
And the members of others orgs—especially regional parents groups—may also want to analyze their organizations’ policies, reactions to recent events, and overall strategic thinking as they move forward.
It all started in late 2015, when then-candidate, Donald Trump, mocked a disabled New York Times Reporter…
Granted, at the time of his actions, no one thought he would win. Combine that with how over-the-top his bullying bigotry was—“subtle,” it was not—and yeah, I too might have felt a little paralyzed as an Executive Director (ED). “Whether or not to issue a statement?” “How strong the statement should be if I do?” As that ED, do you really want to upset your constituents by telling them they should be bothered by such a buffoon, one with little chance to win?
But as Donald’s candidacy kept lengthening, and (along with our denial) got stronger, the opportunity for a retroactive call to apologize began to open—Probably the most strategic timing would have been immediately after he had secured the nomination. But no one spoke up. No one defended their members or constituents. People on the spectrum and their families had to watch in horror as a Presidential candidate—someone who actually wanted to lead the free world…made fun of them. The lack of proper voices sticking up for spectrum folks was subliminally devastating.
Granted, when you run a non-profit, you are in danger of losing your IRS tax-exempt (also called “501c3”) status if you criticize or endorse someone’s candidacy. And if called upon to answer why they did not demand an apology from Donald, most autism organizations might claim this fact as the strategic source of their silence.
But you are allowed to criticize or endorse a candidate/elected official’s stance on a particular issue without jeopardizing said 501c3.
But none of the heavy hitters in the autism world did.
Now, as to why Autism Speaks did not, there is easy explanation, starting with Donald’s belief that vaccines cause autism. Autism Speaks has always flirted with vaccine theory, and only came down hard on the side of science in 2015. However, recent developments (as better described by Mother Jones here) show that they may be returning to vaccines-cause-autism beliefs.
Autism Speaks would also be ecstatic about the return of “cure” talk into our lexicon. And herein Donald is more than willing to contribute (click here to view his comments on Autism Acceptance Day…alongside President Obama’s from the prior year).
But in borrowing a twitter snap from the Mother Jones piece, of Autism Speaks co-Founder, Bob Wright; perhaps (and I say this as explanation, not criticism) we should ask why such partisanship would not be expected.
Regional (and mostly parent) organizations too, should examine their actions—not to scan their consciences, but instead because of their potential power, especially if these orgs exist in more conservative areas. By attacking Donald’s behavior, and not the candidate/elected official, such orgs, in addition to sticking up for their spectrum folk, can often draw in local Republican stakeholders for assistance: Many conservatives are (often deeply) disturbed by Donald’s behavior, makeup, and qualifications.
It’s ASA’s silence that is most puzzling...Or is it?
Quite frankly, straddling the fence and avoiding taking a stance on a controversial issue has been ASA’s raison d’etre since its inception.
Remember that for decades, ASA was the only autism org that existed, and that its budget has always been heavily-dependent on dues-paying memberships. So if ASA relies on those fees, why would they risk alienating half of that budget by having an opinion on a potentially-divisive issue, no matter how imperative the issue might be? Since their founding in the 1960s, this was a strategy that worked for them.
But then in the early “oughts,” new organizations sprang up. And these new orgs WERE taking stands. My GRASP in 2003 objected to “cure” talk, and wanted adult concerns to stop being ignored. Then Autism Speaks popped up with oppositional beliefs surrounding cure-based research in 2005. Another peer-run org, ASAN, emerged in 2006 (whose leadership has to be applauded for never neglecting to issue statements)…
The effect was that ASA, by comparison, was shown to be paralyzed and ineffectual. While ASA didn’t offend anyone, they didn’t really participate either. Whether the new conversations/debates surrounded language, genetic vs. environmental origin, aversives, what research is useful vs. what research is not…By their silence, ASA was perceived as hiding from controversies. The organization almost went under ten years ago as a result, as members ditched them in favor of orgs that had dared to excite them.
Later, ASA (perhaps unconsciously) adopted the corporate risk management strategy of “1) wait, 2) see who wins, and then 3) be quick to hail the winner. ” But the motives behind such actions were easily seen by their members, and the rumor mill stated that they almost went belly-up again.
Scott Badesch joined ASA in 2010 and was soon CEO. From a financial perspective, he miraculously saved the organization. It’s a feat of fiscal wizardry that I, as a former Executive Director, can only marvel at.
But Scott has steered ASA’s “don’t make waves” policy into an era in which nothing might be more counter-intuitive or productive. In the days following the November election, when a man who mocked our community became President, I received many fundraising appeals from ASA about t-shirts and coffee cups. But nothing of reassurance to say, “We’ll get through this, and here’s why.”
Additionally problematic for ASA is that the other orgs that do take stands? They don’t charge for membership.
Has ASA been at the forefront of appeals for members to call their elected officials, and protest the Medicaid cuts within the Republicans’ proposed American Health Care Act (AHCA)? Absolutely! ASA issues something along these lines at least once a week since the threat emerged.
But their battle plan seems to contain only this one strategy…and this is worrisome on more than one front.
Very often, cynics of ASA will look at ASA’s seven-figure budget and ask, “What do they actually do?” And this has always been a fair question. They rarely fund national programs, their chapters fundraise for themselves (and depending on the year, historically have had to kick back donations to National)…Yes, their conference is the biggest of its kind, but it’s also a money-maker. As someone who a decade ago gave a lot of GRASP’s time to contribute to their strategic overhaul, I can tell you that they are not great at reciprocal relationships.
It is their Washington lobbying presence that has always been the justification for the budget they have. We assumed for many years, since no one in DC was attacking the ideas of increased funding, that the money, herein, was well spent. It would appear we were wrong.
Again, ASA is currently composing many informative emails, and then sending them out in the hopes of rallying members to call and ask their elected officials to stop the $800 billion in Medicaid cuts that the (House version of the) ACHA’s passing would ensure. But to be fair, an intern could compose these emails (and perhaps does) in a couple of hours. Emails are not the same as a lobbying presence.
It appears as though ASA has not had the influence in Washington all these years that we thought it had. For even if the bill never gets approved (as all Trump promises thankfully threaten), the very fact that such a massive portion of government funded autism services (represented by Medicaid) could pass the House without an apology to, or influence from ASA?…is telling.
At their annual conference this July, ASA members might indeed want to inquire how their dues are spent. Are ASA leaders pocketing cash to pay off home mortgages? God no! They’re nice people.
But if they’re going to advertise advocacy…
Partisanship in the autism world may be here to stay. Alabama State Senator, Trip Pittman (R) recently wrote an article explaining why he had opposed a measure that, now having passed, will provide ABA therapy to families in his state.
(Until a moronic final paragraph) I found his article to be a fascinating, honest look at how conservative principles are now beginning to flex their muscles at autism services—It was also a fairly dignified piece in the wake of political defeat. I certainly don’t share Pittman’s values, but I’m no “Dem” either, and I appreciated the diplomatic rationalism inherent in his writing (again, until the last paragraph).
The dangerous likelihood, of course, is that others of his ilk will follow suit, and challenge autism funding on party lines. It would be great if someone like ASA was really in Washington.
Stalwarts who refuse to take sides, in the hopes that we might someday return to the good old days of 2012…are doomed to failure in this ugly, new world. I miss diplomacy too; but I do not miss the cowardice of contrarianism.
Resentful holdouts should take heart and inspiration from the notion that whenever we stand up for our constituents, or take that side, we stop being afraid. That is no concession to be salvaged from a bad situation. It’s actually a gift.
Being out in front is the sign of leadership. Staying behind to peer out a window is not.
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), and the upcoming “’The Book of Happy, Positive, and Confident Sex for Adults on the Autism Spectrum…and Beyond!” He also writes the Huffington Post column, “Autism Without Fear.” For more information on Michael John, you can go to www.michaeljohncarley.com