Almost a year ago I resigned from the Board of Directors of NEXT for Autism, the benefactors of HBO’s celebrity-filled “Night of Too Many Stars.” It was an especially disappointing divorce given my having been the only autistic Board member in the seven years I was with them (and what occurred after my resignation was equally troubling).
Well, the wrong hands appear to have gotten hold of the long-ish resignation letter that outlined my concerns with NEXT for Autism.
In an effort to get ahead of the situation, control the narrative myself, and prevent any misinterpretation about how I intended to leave, I’ve leaked the document before do the rather unhappy folks who got their hands on my document. I owe NEXT for Autism no courtesy, but any oncoming attacks on the celebrities that have assisted NEXT in their HBO event are unwarranted, and really won’t help to reform NEXT.
Thanks to Neurodiversity Press for letting me do this on their site, and many thanks to all those influential folks who talked me through the right way to handle this situation. This wasn’t enjoyable.
March 14, 2021
Board Chairs and Senior staff,
Effective immediately I resign from the Board of Directors of NEXT for Autism.
Attached is a full statement outlining my concerns. It is long, for which I apologize. As a person with an autism diagnosis, I’m given to overwriting as a default anyway. But as this is not a pleasant goodbye I additionally have a personal need to be very specific to prevent the types of erroneous conclusions I’ve already experienced after voicing my concerns. Yes, it’s a “speech.” Folks like me get misinterpreted a lot. We therefore have a more urgent need to be thorough and clear. You most certainly don’t have to read it.
A similar version, altered only to empower and challenge others where I have failed, will go out within the next week to additional Board members and non-Senior staff.
I am resigning not because I feel that NEXT, as a non-profit in its current state, cannot ethically ask for public donations. I am resigning because amidst a crisis wherein confronted with that inability, NEXT showed absolutely nowhere near the desire or commitment to change that would satisfy my concerns. Responding to my suggestions, amidst two months of talks, I felt low-balled, and given nothing concrete by way of assurances. I felt managed. I was asked to trust, gave my trust, and then felt that trust was thrown away.
I was the only individual with autism on the Board for what I’m sure everybody agrees was far too long. But this is only a small part of what ails NEXT.
In an effort to make my narrative/reasoning less complicated, I’ll try to compartmentalize my concerns into more easily-understood sub-sections: (1) Personal background, (2) Programming concerns, (3) Grassroots and diversity shortages, (4) Impulsive decision-making, (5) Personal background II.
1. Personal background
When I was asked to join the Board in 2013, I was thrilled, as I was not an obvious choice. I did not have a long history of shared goals with many of the early Board members. Instead, I actually had a history of ideological/ethical battles with many of the early Board members. These founders mostly came from the culture created by Autism Speaks. I, as a person with autism, came from the self-advocate community that had raised deep objections to that very culture.
But in addition to being a participant in the old “autism wars” I by then had also positioned myself in all circles as somewhat of a negotiator as well. As an ex-minor-league UN diplomat, I’d applied those tactics when running GRASP from 2003-2013 and as a result, had developed relationships based on personal trust if not ideological agreement with many on the other side of this figurative fence. I still retain a friendship with Mark Roithmayr, and to my relief, militants from all sides were not my fans.
But while Autism Speaks revolved around research, and GRASP in turn education and advocacy, NEXT would address the one item we all agreed on, services (in design, and implementation). After all that fighting, what karmic, restorative joy! Additionally, despite our disagreements, y’all were powerful folks of influence and accomplishments, who could have an impact in our implementation of this shared goal.
That I was the token spectrum person is irrefutable. But as I learned early on in GRASP, if in developmental steps, a certain amount of tokenism, in the big picture, is often appropriate—so long as it is a stepping stone and not a resting place.
I quickly saw in early Board meetings that there existed a fundraising chemistry amongst founding Board members that I still have yet to see replicated elsewhere (save, admittedly, for perhaps Autism Speaks). It was noticeably transformational, leveraged by well-earned Rolodexes, and I tried to learn from it.
But in those same early Board meetings there were also offensive comments aplenty (that probably only I saw as offensive). While not grandstanding proclamations about finding cures, or battling disease—comments like what was shouted during the old days—these were offhand remarks intimating that lives of people with autism weren’t of the same value than the lives of neurotypicals. The comments were derived from older value systems about autism; values that reflected the medical, or the tragic model of disability and not the social model. Such words hurt to hear, and I questioned, given my public role in the spectrum world, whether I was wrong to stay involved with NEXT. I stayed because the programs were working, and I did not want the fundraising chemistry of these core NEXT Board members disturbed. These were not bad people, and in fact had demonstrated highly ethical standards (that I have long publicly praised them for) in the organization’s infancy. But these Board members had been conditioned to embrace the tragic model, that it was ok to be angry that their child had autism.
So no, I did not share the hurt with them. I did not have confidence that they could withstand the knowledge of how it was their hearts, and not autism, that needed a cure.
I waited too long to voice objections, staying mostly silent during Board meetings that I attended by teleconference. I had hoped that they would see the autism world changing. And I waited for a window to jump through, and then humanely coach, that never came. Over the years I also made a couple of personal extensions to get to know other Board members better. I do not feel my extensions were welcomed.
The years passed, the autism world continued to change, and while the hurtful comments receded, the Board still didn’t seem to notice what was going on in the world on a grassroots level. I listened to folks clinging to proud associations with people like Catherine Lord, who along with every other DSM-5 committee member had disgraced themselves in the public eye by their public fighting with each other in 2012 (Lord had even gone further into disrepute by declaring fervently in an interview—since removed from the internet—that one could “recover” from autism). I wondered what their thoughts were as Applied Behavioral Analysis (ABA), still the world’s most utilized and publicly-funded behavioral strategy for autism, and what so may of their kids were raised on…was increasingly being linked to irreparable trauma. I also frequently dealt with a staff person who, more than once, condescendingly intimated that my personal perspective, while revealing, was unequal to that of parents “that had been through so much.” And on a professional, and not personal level, this staff person would frequently disagree with me when we were collaborating, about the work, and not just about autism. And almost every time we disagreed, this staff person ended up being comically wrong, yet was unable to create a healthy colleague relationship by just admitting they were wrong so we could have a good laugh about it.
As those old values systems were being increasingly and thankfully smashed in the public eye, there was no conversation and seemingly no conscious knowledge of it in NEXT’s culture.
Whatever the complaints may be about Tim, for which I have no knowledge to dispute or not dispute, Tim, as I got to know him, was that window. He got it. He saw the disparity between the conversations amongst Board members, and what was rapidly transpiring amongst a massive, growing self-advocate movement outside our walls, and parents who saw our self-advocate logic as being infinitely more humane and emotionally healthy than what the Autism Speaks value systems had encouraged and embedded in so many long ago.
So Tim and I strategized. I presented to staff about old ways of looking at autism vs. new ways. My presentation was received…well…
But with one exception…there was one more condescending correspondence from that staff member, about that very presentation, and this time I complained to that person and ended our relationship (I intended the rebuke to be private as I didn’t want the person to lose their job. To their credit, they informed Senior Staff. To their discredit, they did so because they could not see the condescension inherent in the email I’d complained about).
And then Tim was out. My window had closed as quickly as it had opened.
But empowered by the short-lived experience, I simply wasn’t capable of returning to my prior role of waiting.
2. Programming concerns
NEXT’s programs, while initially well designed and implemented, have still reflected the old Autism Speaks value systems that appear to resent, not welcome, the expanded diagnosis of autism. And as time has worn on, that discrepancy has only become more visible. The optics are a growing concerning for NEXT in that the programs seem suitable only to the functionality levels of the founding Board members’ children—not in exactness, but within that realm. I know of no NEXT programs that address the needs of folks who present like me or my son. And the programs became less and less innovative to the point where we now often sit, for lack of an original idea, as imitators.
Recently, one Board member, before thankfully rectifying the situation, even endangered us with a conflict involving one of our programs that was serving this Board member’s child.
It is a testament to how wonderful NEXT’s fundraising capacity is, and how powerfully the Night of Too Many Stars event enhances NEXT’s sustainability…that NEXT actually has no grassroots component! But NEXT needs one. Again, the programming we support or create is not at all innovative anymore, it is designed to serve a small sample size, it is so risk-averse that any optics of leadership are out of the question, and using the example of our employment consulting, it seems created only because “everybody else has an employment program, so…” It has an end date and we need to start diversifying our funding streams. There is so much potential for grassroots development, yet no desire to create one.
If NEXT wants to lead? Then NEXT needs to do what no one else will. Over the years I brought projects to NEXT’s attention where involvement (for all but one) of them was at little or no cost, that addressed the concerns of people of color, LGBTQ opportunities, and that contained large sample-sizes of people being served. Getting equal access to diagnostics in neighborhoods of economic challenge and color, a six-year project to train teachers in all 78 townships in post-hurricane Puerto Rico, taking on the cause of Darius McCollum with those powerful Rolodexes of ours…Each time I was told no (and all of which are programs that Senior Staff admit now should not have been dismissed). Everything I suggested to NEXT during those years was turned down.
And in a prelude to my concerns about impulsivity…A couple of years ago, when the Board needed to approve Michelle Smigel taking on a paid PT position, I asked (after she had left the room) if we should all have a conversation about conflict, given that from my understanding you at least risk losing your tax-exempt 501c(3) status by paying Board members. The “no” that I received, not that I was wrong, but that a potential conflict would not even be discussed, clearly implied that I was thought to be an awful person for having brought the idea up. The joke here is that at the time, Michelle was the only Board member I had any kind of a personal relationship with.
I offered also to help with Night of Too Many Stars because privately I was concerned by the choices of spectrum people they chose to highlight during the event. A young man who knew Disney scripts by heart, the Carly Fleischmann debacle…these were nowhere near the examples of autistic potential we could have been inspiring people with. It was far too close to the concept of “inspiration porn,” and in the case of Carly (wherein I dutifully used my Huffington Post column to help us gloss over the damage) we set her up for failure by not preparing properly. My offer to help herein however, wasn’t rejected. It was ignored.
(Sidebar: Why was I so ignored? Board members will protest, but I believe by what they’ve shown, that whatever my accomplishments may be, that the Board felt threatened by them. When I would write for NEXT, exposing my vulnerability, my challenges, and my capacity to love my family, I was well appreciated [inspiration porn?] by fellow Board members. But no one was ever interested in using or capitalizing on my accomplishments. I had 250 contractually-arranged speaking gigs before Tim asked me to finally use that ability for NEXT’s benefit. I was the founding Executive Director of ASTEP, one of the first employment organizations that took young spectrum college grads and negotiated with Fortune 1000 companies around the city for internships. Did anyone ask for my advice when creating an employment program? Most Board members wouldn’t know I had ASTEP on my resume, but the leadership did…)
Herein I somehow was not hurt. It just seemed a farcical confirmation of those old value systems. How dare anyone with autism assume to know more than us?
What does hurt is how long it took me to realize my contributions were not wanted. That’s on me. As many know, my family has a sports background. Well, one thing you quickly realize in sports is that you don’t have to like your teammates, and they don’t have to like you. But you do have to support their contributions. I realized way too late that I was not desired as a teammate of anywhere near equal value.
3. Grassroots and diversity shortages
No one disagrees that we’re too white. Everyone agrees we need to become more diversified. But we don’t seem capable of taking one concrete step. Having worked alongside the worlds of Disability, Equity and Inclusion (DEI) as part of my career (where I reside currently in a senior leadership role at NYU), I’d also been dropping hints about this problem for years also, and also to no avail.
Tim agreed. And so I gave him a list of about 25 people to consider adding to a Board that needed a major influx of new thinking. In addition to adding behavioralists who objected to ABA, truly innovative global service agency heads, I presented him also with people of color who were autistic and researching COVID vaccines, autistic and who had $3 million in VC funding for their company, autistics who were queer, of African, Latin, and Arab-descent…
After Tim was booted, only one person from the overall list was considered, Barry Prizant. My best friend in the autism Asperger world, Barry will also tell you himself that he is straight, white, male, and neurotypical. Oh, and Barry wouldn’t be considered for the Board, but instead for a new Advisory Board (in fairness, Patricia Wright is now re-examining this list). Would this Advisory Board have any real ability to make the Board more accountable? No. Could I trust the Board to change on their own good will? No. Could I trust my suggestions to be the majority influencers of this new Advisory Board, and not be populated with more folks who shared the same values that endanger us? No.
4. Impulsive decision-making
Let’s assume Tim wasn’t right for us. Because initially? I didn’t think so either. When I was approached with Tim’s resume, I communicated that I thought his qualifications were weak. I didn’t think it said CEO of NEXT at all. I didn’t understand why I was being shown such a candidate.
But I was told that we couldn’t be too picky because of COVID, and that he was already hired. I did not share my thoughts that the very opposite of that Board member’s statement was true. COVID had created a lot of out-of-work, highly-qualified non-profit professionals. I do not think we spent much time on the search, nor was there enough Board discussion. It has been said that there may have been misrepresentation about Tim’s fundraising ability. What…we couldn’t call references? If Tim was the wrong candidate, we are to blame. Not Tim.
In rebranding NEXT a few years back, we got nothing out of a six-figure contract with a PR firm that, from my lens, was a poor choice to begin with—It was just not the firm to position us for ten years down the road whatsoever. Turns out they even had a CEO who reportedly treated our female leadership with blatant misogyny. Turns out their ideas stunk. Laura came up with “NEXT,” not them.
I never heard negative fallback about consultant, Stephen Pratt, but did anyone really get impressed by his work? Because I thought it was just “corporatespeak” snake oil. Did he mention to us the blatant reality that we had no grassroots following? That we needed to “diversify our portfolio” a little?
Those three items alone, I’m assuming, threw anywhere from $400,000-500,000 out the window. I don’t feel NEXT’s decisions are researched properly at all, and that this is due to is a culture of entitlement and impulsivity on our Board.
However, it is NEXT’s unwillingness to rectify (even perhaps admit to?) this problem, once confronted with it, that now has me convinced that we are unable to ethically accept donations. We are reckless with public money. We ask working class and middle class families for those donations. And we must stop.
5. Personal background II
Two months ago, after the Tim debacle, Gillian showed me the plans for moving forward. The plans were upbeat, filled with professionalism, and said nothing to me. They were “corporatespeak” vague. The mentorship program could do good work if successful. But I’ve seen many attempts at mentorship programs that failed for very real reasons. In conversation with staff, there wasn’t much of an answer to why we would succeed where others had failed. It’s a low-cost program, so give it a go. My objection was that it’s nothing to get that excited about. It’s not innovative. It’s another same old NEXT program that will be well-positioned but will again contain that small sample size and excite very few people.
And then came the February 3rd Board meeting…
After the ridiculous Tim show ending in his ouster, I expected a Board that was reflective, and looking at itself in the mirror. I saw the opposite. The atmosphere and tone felt like an escapist, doubling-down on “we’re so great, and our leadership is so great!”
And then within that same meeting a Senior leader commented how “unfortunate” it was that incoming Board member, Tommy Hilfiger, had a second child with autism. 2013-style comments were back. I was stunned.
This Board member later apologized, and I believed in the heartfelt nature therein and so I accepted the apology and conveyed forgiveness. But that doesn’t mean the comment didn’t come from those value systems that stubbornly continue to exist, and that show no sign or willingness to change. Small wonder that as the comment was happening, that I was probably the only who registered the comment as offensive.
(Sidebar II: These value systems I keep harping on…If average, everyday folks need to spout resentment about their kids having serious challenges that the parents aren’t (spiritually or materially) prepared for, and do it in the privacy of a parent support group, I understand that. The grieving process is real. Peace. But the grieving process is not only temporary (and has 5 stages, not 2), blame the lack of services, not autism itself. Such value systems have no place in society anymore, and they especially have no place in an organization that purports to help those people whose humanity they are invalidating by such comments. That’s textbook, SNL-worthy farce. It is also further inexcusable coming from people, like Tommy Hilfiger, who have more than enough means to provide such kids with every service they will ever need.)
As I tried to negotiate solutions with Michelle, Gillian, and Patricia, I was asked to trust the new leadership, to give them time. But there was an inherent refusal to give me those concrete assurances about accountability, and organizational culture change. In these conversations, what I said was rarely remembered by Michelle, she interrupted me often, and even the decisions about how to have the conversation…weren’t allowed into my hands. Under the impression that we were working together I was surprised when that Board member’s apology email for the Hilfiger comment surfaced suddenly in my inbox…as I had not given an ok for that Board member to be told of my objections yet. In my memory we had clearly agreed to keep things between ourselves for the time being.
When I pointed this out, Michelle left the conversation. In a text exchange I suggested she return, reiterating my proclamations that change was hard, and that painful conversations were a part of the process. I’d said this to her before and she’d agreed. She said she was willing to have painful conversations. But now she was bailing. Whether she was scared in sympathetically human ways or not, I pointed out that her abandoning Gillian and Patricia to deal with me was an additional testament to the impulsivity; that she should have consulted with me before leaving a conversation that was about me, and my concerns, especially after demanding my trust.
But I demanded accountability. So she left.
Gillian says she wants the organizational culture change to be incremental. I respect Gillian and wish her well, but herein I could not disagree with her more. In the world of DEI, that’s what is said by companies that never change, by CEOs that are scared of their Board, and that know that no real change is possible…but can’t admit it if they want to protect their position.
I have offered to meet still with Gillian in the future, and I will make introductions for Patricia to many people on that list I gave Tim. I will do so because of the potential NEXT still carries given the influence and accomplishments of other Board members, Night of Too Many Stars, and those powerful Rolodexes that you have all both earned and been blessed with.
But I will instruct those people of everything stated here in this resignation letter first. For I intend to charge them with what I failed to do. I suspect they will see an opportunity and still try. My stomach reached a pretty noble limit. I’m not your teammate anymore. But maybe they will be. And maybe you will listen to them. I hope you let them outnumber you, and hold you accountable.