Autism Without Fear: Is It Time to Stop Funding Biologically- or Genetically-Based Autism Research?

There’s a lot to get excited about in the field of autism research. Drexel University’s Autism Research Institute, inarguably the data leader on overall “quality of life” metrics, was recently awarded a $10 million grant from the National Institute of Health (NIH). This was bestowed, however, due to Drexel’s equally-unique approach to “advancing equitable strategies across the life course,” i.e. engaging their more economically-challenged community members far better and more respectfully than their peers.

At New York University, Dr. Sudha Arunachalam is interested in comparing the language that neurotypical parents use with their autistic children vs. the language used on spectrum kids from their parents who themselves have autism.

And finally, the field of educational research has discovered many new strategies (such as  SCERTS) for regulating behavior in autistic youngsters that are infinitely more humane than the trauma-inducing, compliance-based ideas of the past.

But a new wave of ethical violations in the autism world has everyone writing negative articles about genetic, or biological autism research (herein used interchangeably), describing this genre as “at a crossroads,” “in crisis,” or “has erupted.” 

The catalyst of the new dispute between researchers and autistic advocates is an attempt to separate the diagnosis of autism so that one section is labeled “Profound Autism.” For many younger autistics, this is a shocking new turn of events away from the inclusion-based definition of autism that they’ve relied on for as long as they can remember; and the disruption has pointedly rallied a passion to defend their more-challenged, fellow diagnosees. They seem astounded by the negative stigma that the very families of these more-challenged “cousins”…seemingly want to impose on their children.

But for many of us older self-advocates, the “discussions” themselves really aren’t new. The words have changed, but the ideas behind them are similar to the ones held 20 years ago by organizations like Cure Autism Now (CAN), and the National Association of Autism Research (NAAR)—the two medical research giants that in 2005 merged to become Autism Speaks.

SIDE BOX: “Hold it. Before you go any further, why is Autism Speaks so openly despised by people with autism and their allies?” Because unlike other non-profits that seek to help their constituents by building them up and celebrating their potential, Autism Speaks raised “awareness” through a long history of messaging campaigns that devalued the lives lived by people with autism. Some examples:

• Autism Speaks’ video, “I Am Autism.”

• The New York Times: Speaking Out Against Autism Speaks, Even If It Means No Ice Cream

• The Los Angeles Times: Autism Speaks Needs To Do A Lot More Listening

• Forbes: Why Autism Speaks Doesn’t Speak For Me

• The Autistic Self-Advocacy Network: Joint Letter To The Sponsors of Autism Speaks

• The Huffington Post: Autism Gags

• Autistic Women & Nonbinary Network: Is Autism Speaks A Hate Group?

• A Diary of a Mom: No More – A Letter to Suzanne Wright

• The New York Times: Autism Debate Strains A Charity And Its Family

• The Huffington Post: I Will Not ‘Light It Up Blue’

• A Diary of a Mom: Dear Suzanne – Again

Given that history of “Fund us, or your child could end up like THIS,” Autism Speaks’ very ability to exist is still a sore spot for many of us.

And so that underlying legacy of the medical model of disability—a since-disposed mode of thinking that identifies “difference” as in need of fixing—herein refutes the idea that the latest “Profound Autism” developments are new. Going further, this thinly-disguised rewrite of cure-thinking might not actually be about the new arguments, or even the old ones. Those older beneficiaries of Autism Speaks funding or employment—the actual people—didn’t retire. They’ve gone from organization to organization. And so this resurgence of emotionally-unhealthy thinking might also be about the human beings involved, and the desperation of a biological and medical autism research industry that, despite loud protestations otherwise…may have shown itself to be of absolutely no tangible value whatsoever to the autism community.

Yet many of these folks depend on it for very high salaries.

***

To follow the money, and the bulk of work that biological autism research has produced…

Of the more than 1,300 funded research projects listed by the Interagency Autism Committee (IACC) in 2015 (which is when I first looked into this issue for the Huffington Post), a comparatively small amount of funding went towards “services,” and “lifespan” (two of the seven designated areas wherein autism research—specifically geared towards people who are living—is defined). Eight percent, to be exact, went into helping people who are autistic and alive today. This hasn’t changed much since 2018, the last year in which such reporting was made available to the public by the IACC.

60% of the entire funding pool, however, went to researching the biology and “risk factors” of autism. This is research looking at serotonin levels, nerve synapses—the genes—and not anything that will assist the average working or middle-class family with a child with autism for many, many years, if ever. Furthermore, 69.4 of all autism research is funded by the NIH, and 60% of that 69.4% equates to hundreds of millions of dollars taken from the taxpayers.

That all said, when seen outside the autism world, this work is not completely without its value. Given the light it sheds on the brain, it could teach us more about people without autism than any other kind of autism research.

But the discrepancy in funding is highly problematic for more reasons than just inequity. For starters, everyone seems to be realizing that families with significantly-challenged autistic children would be better suited by these hundreds of millions of dollars going instead towards direct services. Instead, the money funds the careers of the researchers. Yet the families are told (by the research organizations) that the research helps them?

And while new figures aren’t as readily-available yet, the IACC’s draft for 2020-2023 shows that the biological and genetic portion of the total funding pool is still proportionately outsized.

2021-2023 IACC Strategic Plan for Autism Research, Services, and Policy Draft January 2023

***

What hasn’t changed over two decades is, again, the push from a loud and powerful minority for a return of that medical model of disability; rather than adhere to the rest of the world’s heading into a social model of disability—one that interprets all difference as a unique contribution to society.

For certain: The defenders of this model backed away from the “cure” language many moons ago, when it became clear that organizations like Autism Speaks had been dealt an irreparable loss in the messaging battle. But from an ideological lens it’s not looking like these researchers abandoned their deficits-inspired iconography at all. There are poker-tells, as is evidenced in the language used in their articles, including a clear resentment of disability seen through humanist filters. And that resentment intensified as it became harder and harder for them to fundraise for a condition that for some is a “superpower” or a gift; as many young people with autism (such as Greta Thunberg) will assert. After all, who’s going to donate money to cure a gift?

Back in those ugly, divisive days of the mid-2000s when thanks to the many rich donors following the leads of Autism Speaks’ Founders, Bob and Suzanne Wright (he of NBC Universal)— this community felt empowered to “fight autism” with seemingly unlimited resources, starting with Home Depot’s Bernie Marcus handing Autism Speaks an inaugural $25 million dollar check. And without an ethical evaluation, perhaps anyone working back then would assume an easy messaging victory by portraying autism as a hell. Many joined forces with the vaccines-cause-autism movement as that emphasized the need for a “cure.” The public didn’t know any better. Green light!

But their opponents (us) had humanistic thinking on our side—in addition to far better science—which to varying timelines eventually wins any ethical argument. And by the late 2000s we weren’t just winning the optics battle, we were kicking their butts.

Their unconscious “surrender” probably arrived in 2009, when Autism Speaks’ heinous video, I Am Autism was released. The public backlash against this video led to a deeper examination of the rhetoric—if not the flat-out lies—used by Autism Speaks, as well all the Autism Speaks-connected organizations like NEXT for Autism, and the Autism Science Foundation. The backlash was so intense that these organizations finally had to change their language.

Reluctantly on their part or not, a new period began. These organizations paid more respect to the accomplishments of autistics, brought more autistics (like me) into advisory positions, most certainly did away with the optics behind such heinous campaigns, and dramatically improved the science they were engaged in.

In turn, we spent time helping them on how to be more respectful with their language. Granted, rather than changing their attitudes, we may have been teaching them to hide the fact that their ethics were flawed, but the resulting absence in vitriol was a noticeable improvement throughout the autism world, and a worthy price to pay for at least a temporary peace.

But lately, the false face of a “newer, friendlier, genetic autism research community” has been shattered. These folks simply refused to change. They didn’t like the peace.

***

“Profound Autism,” when broken down, reflects the same desire to paint disability as tragedy-only as existed in the old “cure” days. “Autism” itself—and not inadequate services—is the enemy.

There’s a comic twist here. Many of the advocates for “Profound Autism” pushed for all spectrum diagnoses to be engulfed under “Autism” via the fifth edition of the Diagnostic and Statistical Manual (DSM-5) that was released in 2013. Before this new version of “the shrink’s bible,” the autism spectrum referred also to conditions called “Asperger’s Syndrome” (which is what I and my older son were originally diagnosed with in 2000) and “Pervasive Developmental Disorder—Not Otherwise Specified” (PDD-NOS). This same clinical community thought that by schmooshing them all together, that autism would be less prone to misdiagnosis if they umbrella-ed all the autism spectrum conditions under one roof. Whether that was correct or incorrect, we adjusted (even after the DSM-5 autism committee—as people—blew up before the book came out). Thirteen years prior I had adjusted to embracing “Asperger’s Syndrome.” I then (after a re-evaluation) adjusted to my new diagnosis of “Autism.” The collective, not DSM-5’s authors, have made it work.

“So now they changed their minds? Now they’re after a split again? Then, let me get this straight…if they get their way, isn’t “Autism” then the new “Asperger Syndrome”? And “Profound Autism” the new “Autism”? Why are they unraveling their own work?”

Alison Tepper-Singer, one of Autism Speaks’ first executives, and the current head of the Autism Science Foundation, recently wrote an article published by the online magazine, Spectrum, that introduced and defended the idea of “Profound Autism” to the masses. Tepper-Singer is well-known for the 2005 movie, “Autism Every Day,” wherein she confessed to almost driving off the George Washington Bridge with her small daughter in tow—because her daughter had been diagnosed with autism—and for whom back in 2006, former Autistic Self-Advocacy Network President, Ari Ne’eman, once called a “murderer” (foolishly, I then came to her aid).

In her recent commentary, Tepper-Singer cited a research article justifying this concept that was published in the Lancet, a report that she contributed to, and that was led by DSM-5 Committee member, Cathy Lord, a longtime friend to the Autism Speaks community via almost all of the aforementioned organizations.

But Singer went beyond advocating her re-packaged idea, and even went so far as to antagonize the people with autism who don’t match her description of “Profound” (i.e. people like me). She used the term “high-functioning” four times in the 1527-word article.

Now, the average person outside the autism world doesn’t know that “high-functioning” and “low-functioning” are offensive terms for many people with autism. But Alison does know. And Spectrum magazine (a company with financial connections to genetic autism research) knows. It was a noticeable provocation from both.

***

My spectrum self aside, I’m an ex, minor, minor-league diplomat, one who believes in diplomacy, and one who was put in unique, insider positions for years to try and humanely convince these folks of their errors. I still maintain a friendship with Autism Speaks’ first President, and an even greater one with a former member of their Board. And for seven years I was NEXT for Autism’s only autistic Board member. No regrets for my failings, and fail I did. But as a believer in diplomacy, I had to try. So after 20 years of this same argument, I am prone to believe that all of the current animosity is about the people involved, and not their “ideas.” It doesn’t take a long investigation to find out that in the twenty years of three-to-five ethically-dubious but powerful organizations, that there have been a small number of folks in the lead, most of whom are friends, and have roots in, or financial connections to the older days of Autism Speaks.

Such people come from either one of two groups.

The first are the parents of significantly-challenged autistics who are also people of high economic means, and whose increased sense of entitlement has not only left them angry and resentful that they didn’t get “normal” children, but who have found in these ideologies the moral justification to remain angry and resentful, rather than embrace emotionally healthy outlooks, practices, and strategies for their children.

To counter, well-known parents of significantly-challenged kids, like Robert Naseef, Chantal Sicile-Kira, and Elaine Hall, have a very different outlook. The latter group have all written beautifully about the advantages in surrounding their children with hopeful messaging, as well as behavioral supports that are rooted in positive imaging and reinforcement. No one invalidates their challenges. But these parents have ethical centers that have prevented them from diving into a very dark and resentful hole.

Average, normal, and not-so-famous parents of significantly-challenged autistics? They too, see that what they need in their overwhelmed houses are dramatically-improved services, not a fight with “higher-functioning” people like me, my son, or Greta Thunberg. These working or middle class families who were once recruited into Autism Speaks’ walks…they see what all the money spent on biologically-based research could do for them, if steered instead towards the direct services or schools they really need. No more are they suckered into wasteful hatred by exploitive messages of “You should be angry at those neurodiverse people!” Fewer and fewer of these folks are duped into “Autism Walks” to raise money for these organizations on promises  that the research will help their kids. Not only are “those people,” the neurodiverse, often significantly challenged, disabled people themselves, but; again…what has all that money resulted in?

Think about it…Exactly what has biological autism research given those average American families with a child with autism over the last twenty years?

Nothing.

Genetic or biological autism research has resulted in nothing that impacts their day-to-day lives. And that’s why these families are less and less fooled into participating in fundraising “walks” for organizations like Autism Speaks.

The second group behind this push are the research professionals who can profit; like Cathy Lord. Lord’s career, though lucrative, is near-comic: She once said that one can “recover” from autism, her “gold standard” (and very expensive) autism diagnostic tool, the ADOS, was recently outed for having ignored women and non-binary folks, and I personally felt she misrepresented her experience with adults in getting on the DSM-5 committee in the first place. Heck, the whole DSM-5 committee was outed by renegade Fred Volkmar of Yale University, for both lying to the public about people losing services under their new criteria, and for faulty research trials. Oh, and Lord’s report defending the ideas of “Profound Autism”? It was published in The Lancet. And why should that matter? Well, in 1998, the Lancet published Andrew Wakefield’s falsified study that linked autism to vaccines. Wakefield’s vaccine notions are theories and a mode of thinking, hundreds of times disproven, that we’re still trying to get away from. Thanks to that 1998 article, parents all over the globe spent tens of thousands of dollars, if not their entire life savings on treatments for their children that were doomed to fail. So why haven’t we run the Lancet out of existence?

And while not pushing “Profound Autism,” there are autism researchers outside of the biological field—luminaries who are supposedly anti-cure, and on our side (as people with autism), like Simon Baron-Cohen, who after setting the autism world back at least 10 years for his “boys only” theories, still gets to have a career with a spotlight? Where was he in defending us against his flawed colleagues? His response to this particular crisis was to apologize for, and legitimize “profound autism.”

If all of these supposedly sympathetic researchers are on our side, why aren’t they speaking up? Where are the articles written by the “friendlies” demanding that Tepper-Singer apologize? Why won’t the governing body of the International Society for Autism Research (INSAR) kick folks like Singer, and fellow “Profound Autism” advocate, Evdokia Anagnostou, off their Board?

Sadly, the answer is simply that they were never as supportive, or as allied as they wanted us to believe. They have an invested interest in protecting their industry and will not turn on one another. Message received.

***

Sidebar II? There may be another factor influencing the resurgence of animosity—that being the current reckoning with the behavioral strategy called Applied Behavioral Analysis (ABA).

ABA has always been the preferred teaching tool/behavioral strategy of the genetic research crowd, because it has historically been rooted in negative reinforcement. It is the medical model personified. Your way of doing things is bad. Our way is good.

Ivar Lovaas, ABA’s founder, was known to slap children for not correctly doing the tasks he’d presented, and Lovaas, in another gig, was also the inventor of Gay Conversion Therapy; a laughable idea with tragic consequences that much of ABA’s “tough love” is based on. Negative reinforcement still resounds today in the Judge Rothenberg Center, wherein residents wear devices that allow the orderlies to electrically shock them when the autistics don’t do what is demanded of them. The entire premise of all this stuff is on eliminating autistic behaviors so that the individual appears more neurotypical.

ABA’s proponents (like Autism Speaks) have also been fantastic lobbyists. You can get insurance coverage for 40 hours a week of ABA. But try getting 5 hours a week of coverage for infinitely more humane treatments such as SCERTS, or Floortime…

No one goes into the field of ABA because they want to hurt autistic children, but rare is the ABA LinkedIn recruiter who informs job candidates, or new trainees of the storm they’re about to enter. And equally-rare is the ABA technician who can foresee the damage they might be doing until it’s too late.

Proponents of ABA have justified its existence by citing studies proving that it’s the most effective treatment. But those studies are now seen to have major flaws when it came to surveying the autistics who’d been through the treatment. When asked if they were happier now, the autistics said yes. But is happiness herein anything more than “mom and dad aren’t mad at me any more”? They were not reporting trauma because no one had told them what trauma was.

Imagine this…You’re a person with autism who flaps their hands at about nose-level. You do so because it makes you feel better. It’s called a self-regulating behavior because it regulates you both physically and emotionally (I rocked a lot as a child, and destroyed many a chair in the house I shared with my mother). It’s something you do when you’re uncomfortable to make you feel better. Win-win, right?

But to ABA it looks weird, and so it has to go.

So every time you flap your hands during your 40 hours a week, the technician grabs your hands during what are called “discreet trials” and shoves them into your lap. But you’re non-speaking so the technician can’t hear you report how awful that is to you. 40 hours a week, for years…how is that not trauma?

While severe “head-banging” is not a cultural factor whatsoever, it’s also argued that prior strategies like ABA have contributed to this frightening response.

Terri Duncan, who runs Children’s Autism Services of Edmonton, perhaps Canada’s most respected autism organization, began her career as an ABA technician, but quickly left. Regarding one painful memory of an interaction with one child, Duncan stated, “The only thing I taught him…was that someone bigger and stronger could make you do something you didn’t want to do.”

Well, ten years ago ABA was at its peak. Now, those kids are the ones who are big and strong, and there’s an outpouring of reports that they’ve suddenly become more violent. Is it payback time now that they’re the bigger and stronger ones?

***

The not-so-hidden poker-tell was the four times Alison used the term “high functioning.”

To be clear, there is no diagnosis that has such a diversity of abilities and differences as autism. On one end you might have Albert Einstein, Alan Turing, or Emily Dickinson, and on the other end, someone who may never use spoken language or have a reciprocal sexual relationship. But what ethics has taught us is that so long as we recognize that someone else’s vision of happiness may not resemble our own, that both ends have absolutely the same capacity for happiness as the other. In addition to being why I love this work, this is a lesson that applies to all disabilities, and not just autism. And unlike twenty years ago, there is now a majority of working and middle-class parents of non-speaking autistics who recognize the damage of such cure-based iconography. Again, they see that despite spending hundreds of millions of dollars, that genetic research has done nothing for them in their day to day lives. We have a long list of public money going towards ridiculous research ideas. It needs to stop.

And to also repeat: the parents of today now see the negatives in subjecting their households to what really, at its root, is hate. In addition to being unpleasant to live with, hate will directly impact their children’s capacity for learning and self-esteem. While the severity of challenges is often used to justify these responses, it deserves repeating that—no—the significantly-challenged end of the spectrum needs the positive vibes more…than our side of the spectrum, not less.

When one marginalized community asks that the rest of the world not use certain words that it finds hurtful, the rest of the world usually understands that it’s not their place to argue, because this doubles the insult. Rebutting such a human right insinuates that we don’t have the ability to know what’s good for us, and that given that assumption, we are of less value than them. Well, the trans community doesn’t need to hear negative opinions about pronoun use from non-trans people. And I can remember whites back in the day who defended their use of the “N” word because it was “in the dictionary.” This is all textbook colonialism, if not outright bigotry. Even if we were wrong about the words, it’s our call. It’s not theirs.

No one was more incensed by Tepper-Singer’s article than me. But in the end, as I had to realize, thus stumbling upon a greater horror, it might not be the fault of Tepper-Singer, Baron-Cohen, or Lord at all. They act as they do because the culture they find themselves in permits it.

When we ask why aren’t all these folks condemned for their words? Why do they suffer no accountability in their community? The answer is that said community is at fault, and not just their more offensive and fraudulent members. Respected folks on Autism Science Foundation’s Boards like Ani Klim or Paul Offit. I know some of these folks, and consider I them to be quite nice to hang out with.

But maybe they’ve been nice for only one reason, and maybe the criteria that folks like me can be easily fooled has been well used. For what should we think of them if by their silence they condone or legitimize their colleagues’ attacks on our very humanity?

Let’s maybe call these folks what they really are, “bigots.” And if that sounds harsh, try to remember that bigots are often calm people that love their children and that can be pleasant with their neighbors. In equating biologically-based autism research organizations as hate groups, many angrier autistics have for decades asked, “What if the KKK ran the NAACP?” or “What if conservative Christians ran my town’s LGBTQ center?” Well, I too used to think that this was a somewhat infantile and counter-productive approach. Well, maybe I was wrong, and that such an accusation might not have been so unreasonable. Look at Autism Speaks’ past grantees, look at the entire Board of Directors of INSAR…

The semantics are a Tolstoy novel, and I’m no Tolstoy. So I’ll conclude without depth, and just state the facts: This is ethically-dubious research, that has been promoted unethically, that has produced nothing of value, with hundreds of millions of dollars of taxpayer money that we need elsewhere, and that is led by ethically-challenged human beings who have greatly profited.

That should be enough for us to stop funding all genetic and biologically-based autism research.