The following is adapted with permission from a chapter I wrote for Michael P. McManmon's upcoming book, "The Autism and LD Toolkit" (Jessica Kingsley Publishers).
Over the last 18 months, all's been quiet on the front of autism politics. But David M. Perry's poignant article in the New York Times had me questioning whether the lull was a good thing...or whether it was the continuation of a bad pattern.
Speaking of autism's largest non-profit, Perry wrote: "I have yet to meet an autistic person, either virtually or face-to-face, who supports Autism Speaks." Having witnessed Autism Speaks', and others' development from when I founded and developed GRASP, it got me thinking...Of those organizations that make embarrassing headlines every two years or so (and we are due), how many of them are still unaware of the humanist traps they fell into, and the destructive impact this may have had on their overwhelmed members?
In 2006, I wrote an article that attempted to give a term for the warring between extreme ends of the spectrum. In trying to convey the uselessness inherent in a) articulate, verbal spectrumites invalidating the seriousness endured by the families of significantly-challenged individuals, or b) vice versa; I called this fruitless endeavor, "the competition of suffering," thinking I'd invented a phrase so perfect that the world would be shamed into overnight change.
"Ha-Ha!," "Yeah, right," and "How'd that work out?": I see the same comments today that I saw a decade ago--response sections of the myriad of articles I read wherein both the authors and their subjects become the targets of rageful someones on "the other end," only because the (likely overwhelmed) commenters' spectrum experience differs.
Mostly, I blame the so-called autism leaders for encouraging that anger, and not the commenters.
One could argue that the messy-headed battle for autism authority is par for the course in our world. Thanks to DSM-5, few diagnoses encompass such a range of abilities and challenges as the newly-defined "autism," and as human beings we love to compartmentalize. Yet we are also presented with a condition whose definition often presents extreme variations demanding polar opposite needs, and the masses have thus far demonstrated no willingness or intelligence to stomach such a disparity of abilities and/or challenges.
Additionally, the inability to emotionally regulate is often a diagnostic tell (throughout the gene pool) that can be part of an autism diagnosis. Thus, the potential for irrational super-sensitivity is enormous.
Lastly, spectrum individuals and families endure more financial hardships than most.
Unlike the worlds of Cystic Fibrosis, or Down Syndrome; the autism world also does not have one, primarily-unifying non-profit that everyone rallies around, goes on fundraising walks for, or volunteers for in the consensus-filled spirit of shared goals. In the autism world, we have a gajillion such organizations, almost never representing the entirety of the spectrum, and founded partly in the rejection of existing orgs. And with all those non-profits, no centralized guiding entity exists, or can exist. Sadly unable to coalition, they then compete for limited funds and press attention...by screaming. Whether it's spectrum folk like myself going after one another to jockey for attention,1,2,*† stating that Autism Speaks is complicit in murders, or destroying chat group relationships over semantic issues; OR whether it's the pro-cure folks producing the infamous "I Am Autism" video, the declaration that all 3 million of us can't use the toilet (uh, last I checked...?), the b.s. statistic of an 80% divorce rate, or the anti-vaxxers' insinuation that people like myself are simply poisoned, chemical accidents...we get comedy worthy of Vonnegut.
* Admittedly, this article could be accused of engaging in that pattern.
† Many noted spectrum authors have also engaged in this, yet wisely took the
documenting evidence off the web.
The present leadership of major players in the world of autism politics--rather than trying to soothe or steer the emotions of its overwhelmed members towards healthier perspectives--often willingly, in that battle for recognition, pours figurative gasoline on the fires consuming their constituents (whereas in other fields, competitions are resolved by comparing the results of their programs). Instead of healing, big-picture perspective, they douse those who trust and need them with alarmist, often misinformative rhetoric.
In the autism world, we fight. We fight over words, vaccines, aversives, behavioral strategies, and what research is ethical or that which is not. Most of the consequences for winners and losers of these fights surround our attitudes towards what constitutes a happy life, and this is rather big stuff; while other battles--vaccines and aversives--can determine whether people live or die. There is cause for anger, especially when services are the opposite of satisfactory, yet the majority of funding goes towards genetic studies having no impact on families living today.
But what's the best strategy to right this ship? Is the answer not to fight, to not get involved? Just stick to trying to get the services we, or our children need? I'd vehemently answer "no." I believe in confrontation 100%, and even privately believe that those who are afraid of confrontation actually do engage in a very negative and subtle way. How we confront, however, is where our value can be measured.
A long, long time ago--before my diagnosis, or my son's diagnosis, I had a different career . . .
As a Non-Government Organization Representative ("NGO Rep," a very, very, low-level diplomat) through the United Nations, I got to travel to some out-of-the-way places. I did some work in Cuba, some in Bosnia, but I spent more time than anywhere in the Middle East, as the Project Director for an endeavor that repaired water treatment facilities in Iraq.
Because of the economic sanctions (that existed before our invasion), the chemicals and coagulants required to purify water could not be imported; and, according to a 1998 UNICEF report, over 5,000 Iraqi children were dying every month as a direct result of sanctions--mostly due to waterborne illnesses. Eventually, by late 2001, The Iraq Water Project would provide clean water to 81,000 people through four restored water plants in the hardest-hit Basra region.
But before our success, as before any endeavor, there existed only uncertainty, optimism/doubt, and hope...that we could pull it off.
It was early 2000, and not only was it in question that we would be able to secure an agreement with Saddam Hussein's angry government, there was also no certainty that in the process we would keep our emotions together. Though no fans whatsoever of U.S. policy towards Iraq, we also (no surprise) despised Hussein's regime. And while we'd encountered a lot of human suffering in our work, most of us knew that we hadn't seen it on the level we were about to witness.
During our travels there, we went to special children's wards at sanctions-desecrated Iraqi hospitals...to allow the tiny victims to confront us. One of the requisites of appeasing our tempestuous hosts was to acknowledge their suffering through a myriad of visits.
The first time we apprehensively entered one of those, roughly, 30 by 40 foot rooms, we saw it filled with disappearing life systems. They lay dispersed in a health care facility that rarely enjoyed electricity or hygiene. A bright desert sun lit the room through a window while overwhelmed staff tried in vain to wash floors without cleaning materials, working around the bedside mothers and the metal-frames of their children's last resting place. It was no secret to staff, the mothers, or anyone, that no child would survive their stay. Were a bed to empty, it would be filled immediately by the same human dilemma. We felt their assault.
But I was to discover a surprising solace as I spent time with each child. In focusing on the individual, the political angers disappeared. The big picture frustrations were forgotten within the revelatory context that in that moment, they were not within my control. To my relief, right in front of me, was something that I could control, even if it was just a self-serving moment of reassurance. Fellow delegates followed suit. We did not renounce the politics; we in fact reinforced our belief systems by temporarily shelving them; by shutting them out so we could stop remembering that which we already knew, clear the brain, and therein learn more. We were not traumatized by trying to "ride the wave" of these individuals--Trauma herein comes when you close yourself off and work to avoid that wave. Those kids did not share the grownups' offended sense of justice (that was our baggage) and most were past the point of fear. They just wanted to be held, made as comfortable as possible, and be told that everything would be all right, until it was over. To over-emote with them would have caused them confusion and anxiety during a time in which they sought peace.
When our delegation departed, overwhelmed colleagues tearfully vented about the indisputable global injustices that had influenced our day. They were not articulate, nor did they make good points as they raged against the heavens. Yet the human need to speak in this clumsy manner epitomized necessity itself.
But when they next approached a microphone, back in the states, testifying about what they saw or did, they spoke differently, sensing the responsibility they had in this very different kind of moment. People needed them to clarify and enlighten, they sensed this, and they rose to the opportunity to inform their audience. To spew would have had a counter-effect. So instead, they led, and they led through eloquence.
Imagine my shift then, as I switched careers into a culture where having a child who couldn't talk was often treated as the worst injustice possible, where having measles was preferable to having autism, and where one prominent leader in the spectrum world confessed to me, "This is war."
In the autism world, we do the opposite: we turn the microphone on when we're overwhelmed. And when we are overwhelmed, we simply spout stupid, often-inaccurate, and counter-productive rhetoric.
There are humanist origins for all these comic/tragic staples of "life on the spectrum" and its politics. The English-speaking world, for one, still reigns as the most financially solvent on earth. And as a result, our standards for income, life expectancy, sex lives, "my rights" this and "my rights" that...etc. are higher than elsewhere in the world. When surprised by a child who might not be able to take advantage of our relatively immense opportunities, we feel a higher degree of injustice than might exist elsewhere. Furthermore, despite such wealth, the chasm between need and delivery in the autism world is catastrophically wide. Our battles are large...but not as large as we think.
Take the organizations we regard as polar opposite--we'll label them "pro-cure" and "militant spectrumites." Most would be hard pressed to find similarities between them because we are so focused on what they say. Yet when we analyze their behaviors, they are revealed to be unbelievably similar. Both use the war talk, both feel it necessary to find an entity to blame (the diagnosis, "big Pharm," or each other), and both occasionally put forth that astonishing misinformation. One could even argue that both engage in bullying tactics.‡
‡ If clicking, scroll down to "2008"
Would more diplomacy work? Maybe not. Diplomacy worked for me for a very long time with GRASP, and the hate mail I got from both extremist ends of all the debates had me in what I thought was an ideal position. But then the day came when diplomacy wasn't working anymore; when our press (and subsequent funding) started shifting away to those organizations who engaged in the rhetoric. It took me two years (too many) to figure out that the extremists, and not I, had accurately calculated what the autism world now wanted from us. The press and funders merely obliged. These leaders I critique actually assessed their audiences quite well, even if they betrayed those who trusted them by not providing them the emotional health they needed.
As someone who doesn't have to be so diplomatic anymore (and I admit, it's liberating)...
Militants? Work on your capacity for, if not come to terms with our challenges towards emotional regulation--letting the small stuff roll more and more off our backs. This quality is working against us, not for us, causing us to fight each other, as well as occasionally show us to be unreliable, emotional train wrecks. We can share AND galvanize the Facebook audience, and as a collective we'll be more powerful for it. For when compared to our potential numbers, the membership tallies in our organizations are quite low, and in some cases have recently shrunk.
And to those families who get so bent out of shape when someone accomplished comes out as on the spectrum, and is thus written about? You are attacking people with legitimate disabilities, even if the challenges they faced are not familiar to you. If you feel so assaulted with stories of potential, understand that it is to show others what we can do (trust me: Your dedication to what we can't do, was heard). I won't ask you to look in a mirror and ask if someone with a disability might be ten times the father, mother, or human being you'll ever be. But you might help your child if you'd look at what factored into those successful people's development. Your children need you.
To the supposed leaders out there, on all sides...we need you. Ari Ne'eman, in one example, prevents Washington's tragically uninformed representatives from enacting legislature filled with hateful language, if not laws; and directs attention where the focus belongs...towards services. And in another example, Autism Speaks fights a good, if not great fight with insurance reform...
But lead with eloquence, not rhetoric. Because I confess: I cringe (if not darkly die laughing) when I hear any of you use the word, "community." Those so fortunate to have experienced the trust of many, could muster more gratitude, and return the favor to their audience by acting like we care about them...as well as their cause.
If the pattern holds, we're almost due for one of you to put your foot in your mouth. Hint: more 1-on-1 contact with members would help. You might also find that their stories are not so dogmatically simple as you once thought.
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), "'Why Am I Afraid of Sex?' Building Sexual Confidence in the Autism Spectrum...and Beyond!" (also Jessica Kingsley Publishers 2016), and "The Last Memoir of Asperger's Syndrome" (unpublished). In 2000, he and one of his two sons were diagnosed with Asperger's Syndrome. Re-evaluated in 2014, he was diagnosed with ASD. More information can be found at www.michaeljohncarley.com