Autism Without Fear: On the Passing of Autism Speaks’ Suzanne Wright—For Fellow Spectrumites

08/05/2016 09:05 am ET

As most of my readers know, I founded GRASP in 2003. GRASP was the world’s largest membership organization for adults on the spectrum.

 

Back then, even just the thought of such an organization (There are adults on the spectrum? They want to be thought of as capable? And they can run their own organizations?) was taking off…until 2005 when the behemoth called “Autism Speaks” entered the scene.

 

Directed mostly at parents, Autism Speaks’ messages were decidedly different than ours—darker, a diagnosis spelled doom, the world was awful—and whether their slogans and inflammatory statements were right or wrong, misinformative or not, emotionally healthy or not, their messages were embraced with equal if not greater enthusiasm. Their budgets, compared to other non-profits, were unheard of—their celebrity clout beyond our dreamiest imaginations. They ran their biz not like other, process-oriented non-profits, but instead like the results-oriented, for-profit corporations that Co-Founder, Bob Wright (General Electric, NBC…) came from. Because of all those resources they epitomized the word “potential,” yet clearly would go down a road driven by anger. All we could do was utter expletives and get ready for a long fight as Davids against their Goliath.

 

Bob’s wife, Suzanne Wright, was the other Co-Founder. I (and many others) fought Suzanne for a decade, and Suzanne was tough. A New York City policeman’s daughter, she always struck me as an anomaly in that judging by her demeanor, she retained pride in this background, even after moving into a social circle that both she and Bob were not born into. Her sense of self was the stuff of envy for spectrum folks.

 

On July 29, Suzanne passed away.

 

***

Fellow spectrumites, to catch a glimpse, you have to understand the history, even prior to 2003, and even if under the guise of explanation—not justification...

 

In the early 2000s, I, my son, many others, and the Wrights’ grandson, Christian, were all getting diagnoses along the vast autism spectrum. And prior to Christian’s diagnosis, Suzanne and her family had endured idiot doctors galore, who bestowed numerous misdiagnoses of Christian. And during those years Suzanne had gone through too many late night, tear-filled calls with her daughter, who couldn’t figure out what was going on with her non-verbal son. Now back then, families of significantly-challenged spectrumites somehow felt justified in lashing out at those on the end of the spectrum that were better able to mirror greater society—those of us they bitterly referred to as “higher functioning.” But as much as we, on our spectrum end, often invalidate these experiences—however unintentionally—there’s trauma therein. And much of what drove Suzanne to crusade in the manner in which she crusaded, so angering us all, may have stemmed from that trauma.

 

Rightly or not, Suzanne believed that her toddler grandson, who also suffered from stomach pain, was crying out for her to go to war for him. So to war she went; never wavering, never compromising.

 

Autism Speaks’ tremendous, initial bang out of the starting gate was created by the previously-unseen resources that Bob summoned from the entirety of a very thick Rolodex; a wealth of connections accrued over his years as a tremendously successful corporate executive, and that he would now would cash in. Autism Speaks would launch like no non-profit ever had.

 

However, the second wave—the reach of its messages—were seemingly the result of Suzanne, who hit the pavement, the parents groups, and the streets with her messages of parent solidarity, of tragedy, and of tragedy “that should never happen again.” Those messages of tragedy cost her, as it would cost Autism Speaks over the years, as she refused to sit down and truly negotiate with others outside her realm of tragic thinking. To listen, or dialogue, would be to a step towards compromise.

 

Did the pushback from our side cost her enough to regret those messages? I don’t think so. Autism Speaks was a fundraising machine, as I saw firsthand too many times through a diplomatically necessary relationship I had with past President, Mark Roithmayr. They “wowed.” 

 

More importantly, what my side of the autism fence had to acknowledge, and mostly didn’t, was that Suzanne was loved. She did not hit the ground running as a brilliant interpreter of rights, or as a revolutionary harbinger of behavioral pluralism. She ran into the arms of average folks as the loving grandmother that she truly was. Despite Autism Speaks’ mission of biological or medical research, despite her existence as a 1-percenter, she won over middle and working class families galore—families who should have been steering their passions towards their own, unmet service needs. Suzanne was that sincere, that in tune with their fears, she was that true, she was that effective. On our side of the ideological border, where the voices of acceptance, and education lay, people like Ari Ne’eman and myself were given enormous faith, and respect by our constituencies. But we were not loved anywhere near the way Suzanne was loved. Our criticisms bounced off her like leaves.

 

We were also not as feared. One high-up executive at the world’s largest service organization once confided to me that his organization and Autism Speaks once had separate requests in for a section of NYC’s Central Park…on the same date. Suzanne’s message to him was clear: Give us that date or else (insert strong language here). When the PBS McNeil/Lehrer Report did a segment on autism without much input from Autism Speaks, someone instructed Autism Speaks’ PR firm to unprofessionally call up the producers, and basically just yell. Even some employees of Autism Speaks (who confided in me???)—Those lucky enough to have her ear, made their approaches with very careful language. She was at war.

 

***

 

After my very first private meeting with Bob, one of few, wherein he and I we were trying to awkwardly minimize the damage of some inter-spectrum blowup, Suzanne emerged to pick him up for lunch. She looked at me: “Join us!”, she said, and I was instantly uncomfortable. No, I sensed nothing devious—In fact, the sincerity I sensed was what had me distrustful. I looked at Bob, who to my surprise was in favor of the notion, and not for any dark, strategic raison d’etre.

 

“Ok,” I thought, and thankfully accepted, even if still guarded.

 

Understand this: I’m on the spectrum. I know how I feel about others, but I am challenged at knowing what people think of me (and subsequently, am always grateful when I am told what people think of me, no matter how “inappropriate” this might feel to others). It’s a trait that really forces you not to care too much about what others think. But given my professional responsibilities, I did not want to put myself in a situation where I was at risk to become coerced somehow, even if through kindness, because of a lack of home-field advantage. But herein, I over-thought. And were it not for the autism wars, I knew there would be things to share between the Wrights and I, like the similarities between my childhood and Suzanne’s, or—though I am no Catholic—the Irish-Catholic roots we all shared. So I accepted their monetary inequality, their generational difference, and walked out with them to a restaurant that had a view of the ice skaters at Rockefeller Center.

 

Lunch was lovely (with no strings attached). We shared photo albums of family, our children, and their grandchildren. I listened to Suzanne, while Bob stayed mostly silent, and began to understand the trepidation others had—Said trauma was evident. Yet she in turn asked questions: For instance, I had relayed to her that my son did not like to hug, but that this was fine because I knew he didn’t love me any less.

 

Suzanne couldn’t understand that, and she pressed for how I could be so confident that he loved me as much as any son would.

 

Suzanne and I saw each other many times at various functions thereafter, but we stayed away from each other. Even after finding one of those side issues to agree on, my beloved New York Collaborates for Autism, we never spoke of them, or much else together.

 

***

 

I don’t write this column as an obligatory tribute to a fallen foe, nor do I write it as a timely olive branch to Autism Speaks—If Suzanne could have gotten rid of me, as a rational force for the other side, by pressing a button? She would have broken a finger by how quickly she’d have reacted (and yet still would have bought me lunches out of benevolence). No, I write this because I want spectrum people to know that despite the tremendous amount of all that went wrong, this woman had qualities that we would do very well to adopt. Let’s start with that benevolence:

 

(Sorry, Bob) Bob and Suzanne had terrible, perhaps even manipulative, opportunistic advisors when they started Autism Speaks, and that is why they got off on such a terrible foot (though the fact that they made this regretful course irreversible, lies on them). But this doesn’t invalidate the fact that they acted far differently than other successful people of great means, when something impactful happens to them. Usually, such folks understand that they have the resources to get their issues taken care of, quietly, without stigma, to the best possible outcome. Instead, Bob and Suzanne went far outside those parameters in starting an organization that was NO “vanity org” (barf). However things went with Autism Speaks, they wanted to help others for real, not for show.

 

Move then onto loyalty. Suzanne’s uncompromising demeanor, I believe, is the result of being that cop’s daughter. Bob too deserves accolades herein, for really…How many CEOs of his stature are still on their first marriage? I know we’re not supposed to talk about this stuff—private lives are private lives blah blah blah—but from all that I, an admitted outsider, could discern, with their loyalty to their grandson aside, the two of them had a great relationship. Loyalty has its sacrifices, CEOs on their fourth marriages don’t automatically deserve our criticisms, and maybe there was too much emphasis on loyalty inside the Wright house. But loyalty like this is rare these days. It takes hard work to accomplish, and it deserves notice. These folks honor promises—a rare quality that we spectrumfolk are usually grateful for in others.

 

Toughness? We steer from toughness too often because it reminds us of the grownups who made our lives miserable when we were kids. But it’s necessary, especially the mental part. And we often make the mistake of thinking that toughness is the property of those who can throw a punch, however figurative. It’s not. It’s the property of someone that can take a punch. We would have fared far better against someone raised on Park Avenue. But no matter how much Park Avenue embraced Suzanne, and it did…we were unfortunately forced to pick a fight with a cop’s daughter.

 

And then there’s that love…I think that often, we on the spectrum are terrified of such unconditional love. But there’s wisdom herein; for too often others think of love as the mark of great stability, when it’s not. It’s equally a source of instability because now we’re vulnerable, now we can really be hurt, now we have something massive that we could lose. Suzanne to us, as spectrum participants in the spectrum wars, was uneducated love bestowed with immense power. And it provoked our challenges at emotional regulation because without knowing it, we were arguing with her by refuting her love. Unable to see the force behind her words, we instead focused on the words, and responded to what seemed like alarmist rhetoric with words of “my rights this” or “my rights that,” or just “No, that’s wrong;” words that were righteous, but had nowhere near the same power as love; the love run amok that possessed her.

 

They say that to deny love, no matter how painful the love might end, is the start to a destroyed and bitter heart. We won most of the battles with Autism Speaks over language, and attitudes; but too often, Suzanne secretly caused us to deny love, and that has to stop.

 

Wouldn’t we all want grandmothers like that? Sure, we complain, but wouldn’t we all, hypocritically, have welcomed a force like that on our team? You’re damn straight we would have, so don’t lie. Autism is not life or death. Only now are we cleared to admit that amidst all those ugly battles, that there was also something breathtaking...

This post was published on the now-closed HuffPost Contributor platform. Contributors control their own work and posted freely to our site. If you need to flag this entry as abusive, send us an email.
CONVERSATIONS