Navigating “Us” vs. “Them” and the Role of Lived Experience in Regulating Ethical Healthcare Practice

A colleague shared this recent piece by a social advocate who chose to leave the practice of applied behavior analysis. The piece was noteworthy to me for a couple of reasons. First, she and I believe in a lot of the same things, broadly – inclusion, advocating across lines of lived experience for marginalized people, as allies and not as usurpers of their place in the conversation. More specifically, like her, from what I can gather from her blog, I believe in a world of co-advocacy and partnership with autistic and non-autistic people. Although I believe in the idea of the autistic cognitive architecture, I also think that, much like the idea of “white” obscures differences inside the majority culture and maintains the us vs. them system by creating a false appearance of homogeneity, recognizing that neurotypical brains vary greatly is important, as well. Like the author, I’m uninterested in curing autism – I simply want a world in which autistic people can recognize their dreams and have the means to chase them*. So, we’ve got some common basis from which to agree and disagree. Second, of course, although some time ago, I made clear that I am not an evangelist for ABA and not even a practitioner of it, myself, I did make the choice, really, and take full responsibility for it, to focus my own Center for Autism on early identification, treatment planning, and early intensive behavioral intervention, or ABA therapy, for autistic** preschoolers.

As an aside, watch this. We need to embrace and empower autistic voices.

Back to Steph’s viewpoint. I think it is an interesting viewpoint – I had not seen this particular article before, but I’m familiar with the perspective, and she has a lot of important things to say. Part of me wishes she would not have chosen to do what she did – walk away. I respect why she did it – and I could see making the same choice in her shoes. I also respect and embrace the anger. But the reality, too, is that there’s a groundswell of support behind the idea of ABA – 39 of 50 states, I think now, covering the vast majority of the population, individually passed coverage bills, most of which specifically apply to ABA (and not broadly to autism therapy). In all of these states, strong networks of the parents of autistic youth were involved in advocacy. I can’t speak for them all, but I was here, in Michigan, as a small part of this happening here, and I do know that I testified alongside autistic young adults who supported the legislation. But while the point that this did not happen over the dead bodies of autistic people, in the sense that there is disagreement amongst autistic people over the topic of early interventions, the point really is that it did happen.

Photo of one of my actual kids and one of my actual (past) therapists, both of whom I love (source: Hope Network)

Photo of one of my actual kids and one of my actual (past) therapists, both of whom I love (source: Hope Network)

Here in Michigan, we’ve added well over a thousand children to ABA therapy in the last three years. So this is a thing. And the reality is that most of the people trained in behavior analysis have no exposure, at all, to the debate on its morality – they are definitely taught ethics, but the ethics are unquestioning (or at least, they seem this way to me, based now on knowing many practicing behavior analysts) with respect to the basic tools they use, as well as the basic assumptions they make about the lives of the kids they serve***. So the result is a strong divide – hardly anyone inside the system is talking about this, and hardly anyone who is talking about this has any relationship to “the system,” which is a real barrier to positive change. This means that things even that shock the vast majority of us, about which there is little or no controversy, like the Judge Rotenberg Center, whose use of shock therapy to “treat” autism is internationally considered torture, but continues quietly in Boston, even right now****.

To me, there are two big issues we must somehow overcome, besides retaining people like Steph from the article in the conversation (if not as therapy providers, as participants in developing a more ethical range of services).

The first is addressing the lack of autistic people in the ranks of early autism service providers and developers – I think this is a real shame. It was a big deal to me to have an autistic staff member, and I finally accomplished this some three years into being at my Center, and more than two years after taking control of my Center. What I really want, but I will admit I don’t know how to do yet, is to have autistic therapists collaborating on the therapies or services for autistic kids. I really hope someday the universities who train in this area do more to get people who have lived experience to join the ranks of trainees and therapists. The problem is that none of us can ever really know exactly what it’s like to be an autistic person, and this will always be a limiting factor with respect to our ability to make ethical judgments. And given the amazing range of autistic people, unlike some other populations, this should be an addressable problem.

The second is that autistic self-advocacy is full of people who have voices – people who are not or not very “impaired” or “disabled” in the sense that society traditionally defines it, whether or not they identify themselves in that way, and who thus are able to participate in the traditional, unmodified discourse (that is ableist and assumes the kind of dialogues that neurotypical people have and use). I love these voices of autistic people, even if they are a subset of a larger whole, and I celebrate them even if they say things I don’t want to hear, but the danger implicit in this is the same kind of danger, say, that would occur if affluent black people who are isolated from deprivation, poverty, and violence, were the only advocate voices on behalf of all black people*****. Or it’s a danger I navigate, myself, when I advocate for trans people – suicidality, poverty, lack of family/community acceptance, and hate crime / violence are all real things, that happen entirely too often to “my kind,” and at the same time, I’ve never experienced any of them******. This is actually more relevant than it might seem – Ivar Lovaas, relatively later in his career, collaborated with John Money of Hopkins in developing LGBT conversion therapies, essentially applying ABA to the LGBT “problem” with disastrous consequences…. Now, many states are now in the process of making conversion therapy illegal (I hope Michigan joins, someday) and President Obama has joined this call, himself. I wasn’t taught this when I was first exposed to Lovaas’ work. I did become aware of it, shortly after I started at the Center, and ever since, I’ve always been conscious of it in trying to build and to understand.

The difference is that, although it can be hard to hear them, people marginalized for their race, their sexual/gender identities, and by poverty, deprivation, and violence – they do have voices, and more and more, they are taking their place in these advocacy frameworks. But, in the kind of neurodiversity view for which the author advocates, how exactly do voices of people who don’t have voices count? This isn’t rhetorical. It does sound entirely like the maddening conversation in which the majority always asks to be educated on the backs of the minority. At the same time, there is legitimacy in a question of how a conversation is shaped that is truly inclusive, if one believes this kind of broad neurodiversity model (and eschews the idea of any kind of therapy or special services that seek to help autistic children gain skills that neurotypical children gain and they don’t, or which NT kids gain more easily than autistic kids, whether or not they are based on a “curative” model).

And, I think there’s a complex question of how much relevance people who do have voices have to the welfare of people who don’t, although certainly, just as in the case of LGBT advocacy, lived experience should count for something, even if that lived experience necessarily has gaps with respect to the broad range of lived experiences.

Anyways, the big thing that I think, in response to this article, is that we have to learn to question the ethics and morality of everything we do – even the things we most believe in – more openly, and we have to be prepared for critical moments when it turns out we were doing the wrong thing, and be ready to change in those moments instead of doubling down. And just like we believe that our therapy can become technically better over time, we have to believe there may be ways to make it more moral and more ethical, too, and we have to set both of those goals, not just the goal for technical excellence.

I guess the problem with these none shall pass moments is that we’re always stuck in what we know today, and not what we will know, tomorrow. (source: Wikimedia)

For now, I’m trying to continue standing on the bridge and making sure that therapy is ethical and truly good for kids. I’m doing it for them, and for myself, and not for anyone else, because I don’t think they owe anyone anything. I respect Steph, the author, and her choice to advocate from the outside. I embrace the disagreements we likely have in our philosophy towards autism, and just the fact that our lived experiences are likely very different. I hope that we can both, together with actual autistic people (since that is neither of us) do something to make a world that is better for autistic kids, and autistic people generally, and I recognize that none of us knows precisely what that world will look like, because we haven’t lived there yet. But  I believe, together, I hope, with her, and with all my autistic friends, that it will be wonderful.

* And importantly, I feel I have no say in what those dreams are. That’s none of my business, unless / until someone chooses to share them with me. Certainly, I’m not in the business of telling anyone what their dream is. Although I suspect I’ll live to see my world changed in unimaginable and wonderful ways by them.

** Regarding the use of the phrase “autistic people” – this is something I encourage everybody to read. I’ve heard many people say (and probably said, at some point, myself) some kind of analogy like you wouldn’t say “cancer kids” (actually, people who’ve worked a lot with kids with cancer do, but that’s another conversation). For what it’s worth, autistic people who both use this language and recommend that others use this language recommend it precisely because they don’t think analogies like the one with cancer are appropriate. I used to more navigate the fence between parents, who preferred the “child with autism” language, and self-advocates, but I more and more give in and agree that the self advocates have it right.

*** This isn’t a criticism of Behavior Analysis. Certainly, right now, Psychology as a field (and the roots of Behavior Analysis came from within Psychology, and although many now identify their field as a different, separate field, many behavior analysts also studied psychology as undergraduates) is just visible dealing with the aftermath of a miserable ethical and moral failure. This came in the form of our field’s unwillingness to take a firm stance against torture and our allowing the American Psychological Association’s rules and ethics code to be twisted to condone and even torture. If you don’t know about it, read the Hoffman report.

**** Changes were made, albeit with a “grandfather clause” that allows some people receiving services here to still be treated with the skin shock aversive, although apparently new patients are not receiving this, any more. But that change did not come from organized rage within psychologists or behavior analysts, but from the outside.

***** Look no farther than Dr. Ben Carson, although, for all his many, many, many flaws, he is actually less racially ignorant than many of his rivals in the current Republican primaries.

****** The complex dynamics of survivor guilt play a big part in this discussion, as well, since I am, admittedly, primarily “lucky” (or privileged) to not have experienced these ills.

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Towards a World Where Every Child Belongs

A few weeks ago, a mom brought her tween son in to the Center without an appointment, to ask about resources. I knew, since I know all my families, that she wasn’t the mom of any of our kids in the ABA clinic, and we weren’t seeing new patients at that day or time, that she wasn’t someone we knew. I caught enough of her facial expression to gently interrupt and offer to help in any way I could. They came back to my office for a chat. Her son told me about his experience being bullied by kids in his school. I spent some time getting to know them, what’s he’s good at, and what he likes. I told him briefly that I had been bullied at his age, too – I don’t talk about it a lot, but when I was in sixth grade, there were these boys who used to gang up on me and hit me. I was too ashamed to complain. My mom ultimately saw bruises, and then she went on the warpath, much as this mom was doing now. If you know me, you know I have an ugly mamma bear side, that doesn’t come out often, but it comes out when someone bullies or threatens our kids, so maybe this is where it came from. So, I supported mom in her warpath – you fight, sister, tooth and nail. I gave them some resources – my friend Anthony Ianni’s Relentless Tour to stop bullying, a toolkit from a national anti-bullying center, and also some resources for places to go to be social with people who won’t bully you or tease you and adults watching over who wouldn’t stand for that – our friends at the local YMCA, I told him about cool things going on like Autcraft. And I wanted him to know that there are people who think autistic kids are cool. We cried a little bit and he gave me a big hug, and to be honest, I haven’t seen him since then, and I don’t know how the story turns out. It seemed like an imposition on my time – there are lots of demands on my time – but it turned out to be a really healing conversation for me, too*. And it’s a good introduction to this topic.

Yeah right, you're going to bully this guy. But back then, when he wasn't 6' 9

Yeah right, you’re going to bully this guy. But back then, when he wasn’t 6′ 9″ and he didn’t know how to stand up for himself, you did.

Teri and I watched this movie last night, After the Dark (it’s on Netflix). It’s about this senior philosophy class, and their last gedanken is that they are in a remote place, and atomic bombs are about to go off, and they have a bunker that can only save ten of them, and they have to decide whom. We really liked it – I gave it five stars on Netflix.

It fit really delightfully with this recent business of using personality inventories for leadership at work (in our management development series, we did a profile called the DiSC – see more in a prior blog post of mine). Elyse kind of went crazy on this, and may possibly have taken it multiple times to get the results she wanted. We had a couple of our newer leaders who hadn’t done the profile do it, and on a profile wheel, she mapped out all of my leadership team, so that we could see how our styles as twelve different people were similar or complementary. It turned out that many of our people were clustered together, and it taught me some important things about their desire for harmony and dislike for open competition (although, apparently not in the context of really long, admittedly slightly dorky board games, but that’s another story that’s apparently happening next month). We talked a little bit also about how we cluster leading to a gap space in our wheel – it turns out that we lack someone who is comfortable as a conductor, and this is true. I bring to the table at least some ability to inspire and motivate, and to give people a really amazing vision, that enables them to achieve explosive growth. Elyse brings to the table uncanny acumen and a brilliantly scientific mind that pushes us to be technically excellent. And a big group of our leaders bring steadiness and harmony – they are critical, because the pace of what we’re trying to accomplish can burn people out without steadiness and harmony. But, when there are things that would go more smoothly if someone just implemented a concrete process and held everyone to it, like schedules and managing our productivity and stuff like that, we honestly kind of struggle. This is a concrete way in which more diversity would help us, even if we also generate strength from what we have in common. Rather than being in conflict, the dynamic balance of the two is what makes us strong**.

One of the barriers in getting to this kind of realization, often, is reticence to accept the idea that people, in their dimensionality, bring both strength and struggle to the table. There are these questions, right, when you interview, and someone asks you what your weakness is? And you’re supposed to say something that sounds loosely like a witness, but which you can spin into a strength, to show that you know how to make lemonade out of lemons. But you can’t say you’re a perfectionist, because everybody says they’re a perfectionist. And, of course, you can’t admit to a weakness from which you don’t know how to benefit, because that’s the way the Bizarro world of interviewing works. One of my biggest weaknesses, which is hardly hidden from anyone, is that I take things personally. When our kids suffer, I cry, I feel it along with them. When an injustice is done to them, I rage. I don’t ask for ownership in the things going on in my life – I take it as a birthright. I’m unapologetic about my weakness – I know that it inspires people to both extremes in their feelings for me. I know that it can make things difficult. It really was also how and why I came to do the things I’ve done in the last few years, when I had the biggest chance in my life to take something personally.

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Like MLK, I argue that a world where your children and mine can play together, side by side, is a better world for your children and mine, for you and me, … for everybody.

After the Dark also took on this topic of weaknesses in an interesting and critical way. I don’t want to spoil the ending, but the kids in the movie are repeatedly pressed to be analytical, to accept that one person can objectively be classified as better than another, and to make choices based only on that kind of holistic and reductionist value judgment. And this goes wrong – terribly wrong. There is something to be said for seeing in our whole strength, our unified personality, that even when we come together, we are not just a collection of strengths, but also a collection of struggles and challenges and weaknesses, and that doesn’t necessarily just make us weak – it is also what makes us beautiful.

In a talk I recently did, I argued that failures in diversity and inclusion often begin with a failed value equation like this one.

In a talk I recently did, I argued that failures in diversity and inclusion often begin with a failed value equation like this one.

I feel like there’s some of this with the model of diversity and inclusion that we have. “We’re” afraid “them,” rather than thinking about how a broader definition of “us” would make us all better. And we set really exclusive ideas of things, and we set them in kids’ minds really early. Another example – I can’t talk a lot, yet, about this project, but I got to spend Friday morning on it, and it’s soooooo cool – I’m collaborating with some people on a  really cool science education project. I was brought in to help with things like sensory sensitivities the autism community may have, and to help make it accessible to a neurodiverse audience. But as it unfolded, I really saw some cool opportunities to be inclusive in so many more ways. For instance, telling the human story of sciences like physics is a great opportunity to critically address the fact that, if you talk about this stuff to a group of early grade schoolers, all the girls will be engaged and raise their hands, but if you talk to the middle schoolers, many of them will already think this is boy stuff and not really participate or identify. They ought to know stories of women like Shirley Jackson or Lise Meitner. Or even the great Marie Curie herself. If they do, they might get to see that doing science like a girl is pretty great, and that if they’re interested in science, they should be able to feel like they belong in science***. And people who are different in the way their brains are wired – well, there is more than a passing interest in the possibility that Einstein was autistic, and he, Feynman, and some of the others even among the most famous of that era, were nothing if not unique. So I’m taking the opportunity to go beyond making this project neurodiverse in the sense of sensory supports, but I’m pushing the team (and they’re being really receptive) to the idea that inclusion starts with how the story is told, and that stories like the one we’re working on can be a powerful vehicle to help make sure that those girls, those ethnic minorities, those autistic kids, those whoever is different for whatever reason – who might make really good scientists, don’t get faulty messaging from a bad value equation that tells them that they don’t belong.

People need to belong not just in professions, or, say, with the diversity of the leaders in my leadership team, in a place in leadership if they want one, but that they also deserve to belong, socially. Back to the young man’s who paid me an unexpected office visit a few weeks ago, the problem is that kids in his school don’t know how much better their life would be if they had an autistic friend. I live in a bubble, especially where I work, where every single person I interact with loves someone autistic. Where every single neurotypical person is aware – my fifty staff, our parents, our kids’ siblings – of the beauty a child with autism has brought to their life. And it’s more than that – some of our graduates, who are older now and in school – are rock stars. So many other kids have found out how cool it is to be their friends. In one case, a boy who was at our Center was in a class with a bully. But the bully didn’t have any friends. And our boy made friends with the bully, and the bully stopped being a bully. That’s the kind of magic I’m talking about. That’s what makes me dream that someday, we’ll all belong, we’ll all be a part of community as a birthright. I dream of a day when every kid has a friend with autism. And a world where everybody, more generally, has a friend who is “different” from them. And like all the people in my life who know and love someone “different,” I think you’ll all love it, when it comes true. Because it will. That’s what I mean by taking things personally.

* This boy wasn’t my patient, but this does also bring in this whole topic of therapeutic sharing – which is primarily for the patient’s benefit but sometimes also benefits the provider. I shared because there is a powerful cloak of invisibility around abuse, and breaking that cloak down helps the victims of things like bullying. In a recent panel discussion, I also, however, made the argument that some, particularly in psychology, of our ethics models and the way we think about multiple relationships with our patients, actually makes things worse instead of better and is ill thought out. As I say later in this piece, I am unapologetic, often, in positions I take, and in my defense, I’m not just saying this now because I’m a full grown clinician and no one can victimize me – I said the same thing during the ethics segment of my board certification oral examination.

** One example of this, I make fun of calls to have a “Straight Pride,” but just as many white people don’t really understand that they have a race like anybody else, I think maybe a future direction for enhancing our understanding of Pride as a celebration is that, when we celebrate nature’s diversity of sexuality and gender, plain old straight people are part of that diversity as well, and as I said in my Sorry, Not Sorry Conversation, one of the problems with the I’m Sorry movement at Pride is that the straight people who are part of it have failed to understand what Pride is about, and they don’t belong because they don’t understand what they’re celebrating. So, increasingly, I think we need to teach them to have pride, too, much like feminism is not about hating men, and anti-racism is not about hating white people. Not a Straight Pride event, but it’s okay to enjoy your identity as heterosexual.

*** When I applied for engineering and physics graduate programs, one of the physicists who wrote a letter of recommendation for me shared that, when she herself had applied to grad school, she had found out after the fact that one of her professors, who had agreed to write her a letter of recommendation, had put, in it, that she, as a woman, had no place in physics. She found out about the letter, thankfully, because it made someone at the university to which she applied livid, and they leaked it to her. And, obviously, she managed to make it to being a professor of physics at Michigan, so she did not half badly for herself. And in case it seems like this is a problem of yesteryear, we have the current inexcusable behavior of a Nobel laureate.

How I Became a Real-Life, Fairytale Princess

I had the opportunity to provide a lunchtime keynote speech, participate in a panel, and provide a workshop during the 2015 annual conference of the Young Nonprofit Professionals Network of Grand Rapids. I was particularly honored to speak alongside some really powerful guests, including a number of personal friends and the tremendous damali ayo. I wrote a short, separate post with a link to this full text and also a link to my presentation visuals for the afternoon. This is the full text of my lunchtime keynote.

Thank you so much for inviting me to speak, today. I’m thrilled to be here, with all of you, with all of the energy, the passion, the dedication, and the commitment you bring to the various dreams and missions you are carrying out. Uniting them is a drive to make this world a better place, not just in the abstract, but in the actual, within our own lifetimes and lovetimes. And thank you, as well, to damali ayo for making time to be here with us today – your words and your work are so inspiring, and I am so thankful to have had and to be having the opportunity to learn from and with you.

This afternoon, I will be giving a more formal presentation, Queering the Value Equation, and I hope you come (not that the other choices aren’t very good, too, but come to mine!). Right now, while you digest both your food and the ideas you heard this morning, I want to get a little more personal. I’ve written before that I am a real-life, fairytale princess. My dream and my mission revolve around young children, so I’m going to do what “kid people” do, and offer you a little storytime. For your lunchtime story, I’d like to tell you how I got to princesshood. So, I’m going to tell you part of my story, the mixed up tale that brought me to the autism revolution, and how I found myself, and love, along the way. In my time at Hope Network, I’ve gotten the chance to learn from an excellent teacher of storytellers, but I can’t make a story really, really good all by myself. For a story to be really, really good, though, you’ll have to believe alongside me. I hope you’ll do that.

Like any good story, it’s a long story. I don’t have time to tell you all of those parts here, today, but I do want to start briefly with how I became a nonprofit professional – it wasn’t my original aim. I actually studied engineering in college, and liked it enough to get a master’s degree. I worked in the engineering world for about five years, and although I think people have an increasingly hard time believing it, and sometimes I myself have a hard time believing it, I was actually a really good engineer. I learned, in particular, the art of magic-working as an engineer, and particularly that magic doesn’t come just from one’s own internal power, but it comes from connections and community. I had the chance, relatively late in my five year engineering career, to take on “fixing” a project that should have had a five year development cycle, but needed to be started over, eight months before the finish line. It was maybe the first time in my life I really worked magic, and it taught me an important lesson. What I did to pull it off wasn’t in the technology – I could solve a mean equation, but that wasn’t what helped me do what needed to be done. Rather, it was deeply within relationships. Building relationships with our customer to help them understand just how perilous the situation was, without paralyzing them with fear. Building relationships with our plant staff, who were often angry, burnt out, and felt under-appreciated. Who were never valued too much, but without whom the miracle couldn’t happen. Managing all those feelings, all those fears, pushing them but not overwhelming them. Bringing them together, even if they didn’t realize it. To make magic happen. And I – we – we did it. We launched that product on time. Not quite without a hiccup, but those are stories for another time. Nonetheless, we launched our product on time, and it worked, and the magic we wrought together saved the day.

Ummm, yeah, it didn't work anything like this.

Ummm, yeah, it didn’t work anything like this.

It worked, but it was the beginning of the end. After I’d proven to myself that I could do that – not just solve equations, not just make scientific discoveries or extend science, but build things that actually worked – I knew that I wasn’t where I was supposed to be. For me, personally, although I like solving problems, I wanted a more human, connected, personal set of problems to which I could take my analytical abilities. That took a while to find. Professionally, I spent more than two years taking night classes while working 60 hours a week or more as an engineer. I dismissed some ideas, for me, right away – going to law or business school – there isn’t anything wrong with either of those things, but for me, they were dangerous because they were surface and not deep gratification of my need to change. I didn’t want to put the effort in, just to end up behind another desk, pushing other paper, feeling equally unfulfilled. See, this is something you have to know about me – I can’t live, if the fairytale dies. I don’t have life events. I go on adventures. I don’t mean taking exotic vacations (the truth is that I’m usually too busy trying to change the world to take vacations, but I’m trying to learn, I really promise I am), but this is rather how I’ve always needed to see my life, and at that point, as a young professional, I was finally committing to finding some way to make my life full of adventure, to take my rightful place. Maybe you’ve had a moment like that in your life – where you could do what was safe, or you could do what was good. Like Aslan in C. S. Lewis’s stories, I chose in that moment to be good, but not safe. And I needed to do that, to inch closer to being the fairytale princess I was supposed to be.

Meg Murry, I will always be in your debt.

Meg Murry, I will always be in your debt.

About that… being a fairytale princess. To do that, I needed to find my voice as a woman. Which was somewhat complicated by this whole business of people thinking I was a boy. For a long time, I’d been cultivating girl and women role models, from Meg in Wrinkle in Time and Madeleine L’Engle, to Elizabeth Bennet and Jane Austen, to Toni Morrison and Zora Neale Hurston, and their characters, later, in college. I learned to be as much like my inspirations as I knew how to be while letting people continue thinking I was a boy. In the middle of my engineering career, I had a little time off to myself. Really, I got laid off a couple weeks before 9/11, and there just weren’t jobs to get. During that time, I found feminism, which made things better, and worse. Gloria Steinem and others contextualized in a powerful way for me, what I had already found in Morrison and so many others. They taught me what women’s voices sounded like, and they taught me how to know, instinctively, when they were absent, and how to think about drawing them out (which is the “better” part). But I couldn’t quite master drawing my own out (which is the “worse” part).

These sisters, calling me.

These sisters, calling me.

So, my own woman’s voice was the one most markedly absent in my life. I didn’t really know what to do about that, yet. As I continued trying to molt the image of myself as an engineer, which wasn’t for me, and try to find some kind of way to the butterfly underneath, I didn’t find me, quite yet, but I did find psychology. I took a class, and I loved it. It was, admittedly, human sexuality (I hadn’t taken psychology ever, before that, except one terribly boring high school psychology class, about ten years earlier, and human sexuality is nothing if not completely unboring). How could that go wrong, right? I took that class thinking, well, I don’t know what I want to do with my life, but I ought to stay sharp, until I figure it out. It was sort of like mental training. But it was amazing – I found myself intellectually stimulated, asking questions, growing as a person. So I took another. And I asked myself, what am I looking for, really? Why am I looking for my path, when it’s right here? So I set out to become a psychologist, because it brought out my passion, which ultimately led me to graduate school at Florida.

This came just a little bit later!

This came just a little bit later!

But I wasn’t a princess, yet. I had, actually, found this exotic thing called a “transsexual” (that’s the word they used, in those days). But that whole thing sounded, well, not me. There were too many problems with it. There was some kind of arcane process wherein some kind of surgery turned you into something you were not. But I didn’t want to be something I was not. I wanted everyone to know what I actually was. If there’s good magic and dark magic, that sounded an awful lot like dark magic, at least the way it was presented to me and the way I understood it at that time. And also I didn’t want to be a freak show – I totally respect people who flaunt societal expectations, and I think a new wave of people who are socially non-conforming in new ways, is doing new and really exciting things. In other ways, I, myself, am proud to not conform, but the truth is that I also kind of like fitting in, because I really love connectedness, and for me, if I couldn’t have that, I wouldn’t be authentic to me. In hindsight, since it’s such a trite plot-line in adventures, I had an obligatory near-miss with my destiny. I figured out I was indeed trans (not the arcane and dangerous sounding thing I’d heard about, but the real thing), but I figured it out just a few moments too late. About a year after I came to that realization, Jenny Boylan was the first modern, American trans professional to really tell her story of coming out while retaining her profession and her community – her connectedness. In fairness, I had missed Jan Morris entirely, who also would have appealed more to my sensibilities, than what I found, and she had originally published her book long, long ago. But, anyways, I missed the tidings of good news that were already out there, and I missed the tidings of good news that came just a few moments too late, and I made the strategic decision that coming out, and being fully authentic, wasn’t right for me (yet).

While I focused on getting out of engineering and becoming a psychologist, I accepted, but hid, this idea that I was trans. Although non-binary identities weren’t really a thing that I had been exposed to until after I ultimately came out, I essentially tried to create one for myself. Non-binary identities are great, when they’re representative of that towards which you are running, but they’re not so good when they’re just a form of running away. I didn’t talk at all about being trans, but I gave myself fairly broad ranging permission to stop much of the pretending. I did that, ultimately, for ten years. That identity occasionally made people uncomfortable, but far more people accepted me than didn’t, and I guess it was a gateway to authenticity. It wasn’t authenticity, however, and if you’ve ever been “this close” to what you’d always wanted, you know that it’s not a place to hang out for extended periods of time – that gets excruciating. And it was excruciating, although the truth is also that I made so many friends during those days, I had so many adventures, and I experienced so much joy, too.

In the meantime, though, adjusting to psychology as a culture took some work. I survived more than few faux pas, not the least of which was interviewing with someone (who would become my dissertation chair) who had been the president of two international bodies governing my sub-field and was in the process of becoming the leader of the other one, and telling him that I didn’t know exactly what this “neuropsychology” was about, but neuropsychologists seemed to ask interesting questions, and they work with interesting patients, so would you still let me in? Surprisingly, he did. It took my path away from Los Angeles, where what I thought I wanted had been, and to Gainesville, Florida, where what I needed was.

Seriously, you guys, I did not see either of these two, like, ever.

Seriously, you guys, I did not see either of these two, like, ever.

Gainesville was an adjustment, itself, too. Probably none of you are as naïve (or stupid is a good word, too) as I was, to think that all of Florida looked like a scene from those old Miami Vice shows. But that’s what I thought, and I was all ready to start stocking up on linen blazers and pastel. I arrived in Jacksonville (where my parents had actually moved, coincidentally or not so coincidentally, depending on how you look at it). Jacksonville is much more Gone With The Wind than it is Miami Vice. And then I got on the road, and I drove to Gainesville. And the swamp on the way to Gainesville is way more Anaconda than it is Miami Vice.

Also, when I got to Florida, I found I had to do rotations with children, and this was kind of a problem. The thing is, I was all excited about finding psychology, but I sort of hated kids. The only exposure I had to kids, besides having been one, was being stuck in nursery by my church, because I was a warm body, and it was my duty, which of course came with no training, and being basically thrown into a room full of crying babies. But I knew I had to learn, and so I decided to do what Buddhists call turning into the sharp points, and instead of minimizing the role of kids in my life, I started spending lots of time volunteering with them, at one of Paul Newman’s Hole in the Wall Camps, Camp Boggy Creek. That changed a lot. The Hole in the Wall Camps are camps for kids with serious illnesses. They’re the sort of place that generally elicit one of two polar-opposite responses, of overwhelming joy, or of revulsion and pity, and it says everything about you which response you have. But they’re also places where you can learn something. I’d never thought of childcare as something in which one learns skill. I thought it just took talent. I’ve never been very good at being talented, but I’m a great learner. And when I did learn, it turned out kids actually kind of liked me. I was good for them. And they were good for me. They wanted – needed – my friendship, my love, my spirit of adventure, but never my pity. And knowing them in their joy was that deep sense of fulfillment and connectedness that had brought me in search of a new career to begin with. It must have had some impact. A few months later, people in my graduate program thought I was studying to be a child psychologist, even more than a few of the child psychology trainees thought that.

That Camp was – is – a place where love burns bright. The love burned bright there, because, there, if only briefly, the fairytale was real. When I was there, I was a fairy-tale character. But far more importantly, getting to understand kids was another pivotal moment in my professional development. When I was an engineer, I had learned that magic was real, and that it came from my connections and relationships. Spending weekends at Camp Boggy Creek and my weekdays in a hospital, one foot in the fairytale and one foot in “reality,” I learned that I could bring the fairytale back with me. Much as the magic, once I learned to unleash it, it started following me everywhere I went. I found that I could create a forcefield around me, and in my forcefield, I could be a real-life fairytale character. Being a real-life fairytale character let me learn to be a doctor without pity, which is the only good kind, because pity has never really helped anyone – if that’s the other thing my kids taught me in those years, it was that, no matter how rough the things that were happening to them were, they never, ever wanted pity from me.

So, things were getting good. Now, I was just missing the princess part. I brought the magic and the fairytale with me to Chicago for a year. I got to live around the corner from the Obamas (not that I ever really saw them). And go on more adventures. When I got my marching orders for fellowship, it took me, surprisingly, back here, to West Michigan (Holland was my home for the second half of my childhood, but I hadn’t really planned on leaving the South, once I fell in love with it, let alone coming back to West Michigan). So, back to Grand Rapids I came, and this was where all the rest of the pivotal events in my ascension to princess status happened.

The next pivotal event was Hope Network. Although, after learning the fairytale was real in Florida, I had continued to work with kids all the way through my time there and in Chicago, I had actually wound up, at Mary Free Bed, in a fellowship working with adults. Although I had ranked the position really highly in the match, it hadn’t been perfectly what I was looking for. In a different way, Hope wasn’t what I was looking for, or what I thought I was looking for, either – I knew how to diagnose autism, but I didn’t really know too much about an autism center. It was kind of funny, really, because one of my dear friends in graduate school would have thrilled at this job, back then, and she got the job I thought I needed (at a famous research hospital), and I got the job she thought she needed. And we’re both the happier for it. I accepted a position with Hope way in advance of finishing my fellowship.

And then I got to Hope – you know, there have to be dramatic turnarounds in stories like this, and this is where the lighting turns dark and the music dips into a foreboding, minor key. The thing about stories is, the good ones never go in a straight line. I walked into an empty clinic. Having finally signed the mortgage on my first home, I was surprised with an unannounced non-compete agreement, but then far more worrisome, a ghost town. We had half a dozen people on staff, but we weren’t serving any kids, maybe for an hour or two a week, at most. We had a practice manager on staff, but we didn’t have a practice. And I started seeing patients and quickly ran rings around the rest of the clinic combined, but I couldn’t generate enough revenue to sustain us all. So I did a lot of going home and crying myself to sleep.

As luck would have it, my boss, who directed the Center, and who had no idea what he was doing, took us to a conference in Philadelphia that winter. There was one other person on the team who seemed to also be a heroine plucked out of her story and placed in this wasteland, my beloved friend and ever since then, my left-hand woman, Elyse. Heroines find other heroines. In this case, we got frozen yogurt. And I asked her what we were actually supposed to be doing – you know, if I had a magic wand (I didn’t yet, back then – I do, now – I got it for my birthday and it lights up and it’s kind of wonderful), I asked her, what was our Center supposed to look like? She was the only person on the team to whom I didn’t need to say, “Because you know it’s not supposed to look like this.” Because she knew, already. And Elyse told me what she knew – which turned out to be a lot – she was the first behavior analyst I really got to know well, and although I’ve gotten to know many more since then, she’s still one of the best I know, and she’s still my left-hand woman, although now our triumvirate is completed by my right-hand man, Joe. And there was my next lesson… sometimes, fairytale princesses need to stage coups, you know, build armies, ignite revolutions, raise hell.

Before I was all like,

Before I was all like, “Welcome to the Revolution!” I was like, “Awww, crap, what have I gotten myself into?”

Now, handling court intrigue is on my short list of talents (this is not one of my more endearing qualities, at least to the HR people). So, I sharpened my knives, but I didn’t even have to depose that director. Amusingly, ridiculously, call it what you want, he got re-tasked a couple months later. The next director – she was the fifth of the Center, in the two years it had been opened, listened to me in a way he had not. She encouraged me when I asked questions. She usually didn’t know how to get the answers, but she always understood why I was asking and never wrote me off. Like any good fairytale, friends and allies are where you least expect them. She got re-tasked, too, though, and eight months after my first job working as a psychologist, I was asked to direct the Center. So, I went from never having any formal management experience to having all this responsibility. Also like any good fairytale, alliances shifted and evolved – when I first met the major donor who had made my Center possible, she stormed in yelling about how the front office never answers the phone. About what she was angry, I had no idea. But I found out, and fixed it, and we’ve been friendly ever since, and she later proved to be a really powerful ally (that’s the thing, the best people make the best friends or the worst enemies, and it’s all a matter of perspective). In that first year of rebuilding the Center (this was three years ago), I spent a lot of time responding to people who had never tried to build an autism program, let alone fix the one we already had which was flopping around like a fish on a boat deck, but who still knew better than I did what it needed to look like. I got pushed, over and over, into death by committee instead of design thinking (sorry, I love freedom, and I empower my people, but I don’t really believe that dreams are democracies). And I had to grow a backbone, and quick (not all of you went to grad school, but grad school isn’t exactly built, too often, around encouraging the idea of backbone … all too often, we’re selected as much for our smarts as we are for our sense of masochism).

It took time, but it worked. Fortuitous winds blew. I got to be involved in changing Michigan law so that kids with autism could get the help they need. I had to “fake it till I make it” with respect to being an autism expert, and I read a lot of journal articles and listened to a lot of science, and I got there. I still think being an autism expert means I’m only marginally less ignorant than the rest of the population, because we know so little about autism, but I did establish myself, as rightfully as most people can claim it, to be a little bit of an expert. And a team started growing around us, and we started delivering results. By the end of our Fiscal Year 2013, we were getting close to fifteen times the size we’d been when I started two years earlier. Little kids were thriving – learning to communicate for the first time, learning to learn, learning to play, learning to have a brighter future. Sometimes – not always – they did so well that people wouldn’t believe it, even though they were watching it with their own eyes. Parents were going from autism victims and survivors to autism advocates. And we were building community.

After I became Director of the Center, I was packing up files the prior directors had left behind, and I found a printed out e-mail with my CV in it. It was written to the director who had hired me. It said, to my great amusement, that I wasn’t a very good candidate for the job, and I really didn’t have much experience or seem very promising, but the recruiter thought she ought to at least pass on the resume, anyways. I still cherish that letter – I’m going to get it framed at some point. And it’s yet another time in this story when I had a surprise up my sleeve. What can I say? I love an underdog story.

But I was still hiding. That summer, I brought friends to Actors Theatre (if I can put in a brief plug – go see their plays. They tell stories no one else in Grand Rapids tells, and they are stories that we all need to hear). They put on a play called Looking for Normal. In the play, what starts out as an apparent mid-life crisis turns on its head, when the main character admits to family for the first time that they are transgender, and need to transition, or start living authentically as who she is supposed to be. I was transfixed. And squirming – yes, yes, I know that’s an oxymoron, but never mind that. I was waiting for people to jeer or laugh. I was waiting for people to get pitchforks and torches out from under their seats (you know, if people try to sneak a text message in during the middle of a play, they would try and sneak pitchforks into the theatre). But they didn’t. They gave the play a standing ovation, cheering and cheering. And my assumptions about what I couldn’t do, myself, turned upside down.

This is the next to last lesson I learned, but it’s the most important. I could wield the magic, I could live in the fairytale, and even bring it home with me, I could have the dream, but it would be just that – a dream, just for a time, still pretend – if I was still in hiding. Hiding wasn’t where I belonged, and until I took my rightful place, the dream couldn’t come true, couldn’t be real or permanent. I’ve always taught my team the belief that we make a long-term commitment, to hold the hand of the AutismFamily, to be an adopted part of that family, and that we can’t just make them a promise today, but we have to build, and to be, in such a way that we can keep that promise tomorrow, and five, ten, fifteen years, or more, down the road. Just as we couldn’t make decisions that would let us serve them now, but then have to shut the doors in a year and leave them, stranded by the side of the road, I couldn’t keep surviving like this, and until I could come out of hiding, I wasn’t really in a position to make anyone, including this family I loved so much, long-term promises.

So, I took a deep breath. The fall of 2013, I invited one of the friends I’d taken to the play for coffee. And I came out. For the first time, ever. And like the theatre goers, but in a far more powerfully personal way, she didn’t laugh, jeer, doubt, boo, turned out not to have brought her pitchfork, but she accepted, believed, encouraged, loved. That was so profound that I didn’t sleep at all that night. I came out to another person, and another, and the same thing happened, except for the not sleeping part – I love to sleep, usually. In December, I asked my Executive Vice President of Talent Management to coffee. I came out to her. She took a deep breath, and she said, “We want you to do this right here. You tell us what you need.” I came out to my own manager at the time, another EVP, and she did the same. They came out to my CEO on my behalf, and he did the same. When he in turn came out on my behalf to my board, the benefactress who had come in yelling about the receptionist all those months earlier was my most passionate defender. All the people who shouldn’t have – the conservatives, the clergy, the risk averse – they supported me. In the meantime, I kept coming out in my personal life. To my astonishment, no one rejected me (and really, no one ever has). Because relatedness and connectedness is really at the center of everything I am, I had a really big professional network, plus almost fifty families in our day therapy program, hundreds of families I saw as evaluation patients, a lot of people who needed me to come out to them. So I did a lot of coming out. Which is kind of good, because, after a while, you know, I started to re-learn confidence. Hundreds of people have accepted you so far. Maybe your carriage isn’t ever going to turn into a pumpkin, and maybe you don’t need to lose a glass slipper at all. Parents responded with an awful lot of hugging and crying. With more than a few “I thought you were going to say you were dying, or that you were moving away, this is great!” And a couple of, “You know, we know a thing or two about having a child who wasn’t anything like we thought they would be, and then realizing they’re pretty great. You’ll be fine.”

In February 2014, I flew to Florida to come out to my parents. I didn’t really know what to expect, although I didn’t really expect them to do anything crazy. But I had in part delayed coming out all this time for fear of hurting them. I was ready, if it really came to it (fairytale princesses must be willing to risk everything) to sit on the curb, call a taxi, and go straight back to the airport. My daddy said, “I don’t know why you came all this way to ask if I accept you. Of course I accept you. You’re my child.” My mamma (my original inspiration for taking no prisoners), lived up to form and said, “If anyone has a problem with it, they have to come through me.”

It took a lot of planning, but I ultimately transitioned at work about ten months ago – although it seems like it was a lifetime ago, and in many ways, it was. The AutismFamily accepted me as their own, just as it always has. We planned for “acceptable casualties” when I came out, but we didn’t lose any patients. Rather, my Center became sustainable for the first time, ever, in the middle of me coming out. My team celebrated me (and may possibly have gotten me drunk, but don’t tell HR that!). While I was walking through the doors of my Center as myself, for the first time, we were passing the million dollar annual revenue mark, for the first time, and we’re on track to pass the two million dollar mark easily, a year later. We keep running out of space and we’re not even slowing down, but learning to move faster. But much, much more importantly, and this is yet another lesson – I learned that, as a leader, when I was brave, my bravery had an amplifying effect. Far from being afraid or rejecting or running away from who I was, I found, over and over again, that people saw me as brave, and when they did, they decided to be brave alongside me. In their eyes, I saw love, yes, and acceptance, but I saw something much more profound – in allowing them to love me, I gave them pride. People with pride can do anything.

This Prince Charming, though.

This Prince Charming, for real

Just one thing left for this story, right? Prince Charming? Yes, that happened, too. In January of 2014, when I wasn’t looking for love, a friend who is never social asked me to come out for a drink. I couldn’t say no. I teetered up the icy back fire escape of the restaurant, trying not to fall. At the top of the stairs was Teri, in his vest and necktie, smoking a cigarette (of course I made him quit) with friends. He opened the door for me, and our eyes met, and I knew. I got him to come over and say hello, found an excuse to keep talking to him, met up with him a few more times in a group, and then we went out on a date. He almost didn’t come, because his car wouldn’t start, and he didn’t have any money. So I picked him up (I might be a Princess, but this isn’t the old days anymore, you gotta do what you gotta do). He seemed nervous, and I touched his arm to reassure him (and turn up the heat). Apparently that’s when he finally figured out it was really a date. He didn’t kiss me, that night, but he did the next time. And we’re enjoying living happily ever after, even if our life is still full of dragons that need dealing with and villages that need help. I encourage Teri’s creativity as a writer and passion for serving youth through the fabulous youth group at the Network, Grand Rapids’ LGBT Community Center, and he encourages me in my role in the autism revolution and in my own role as an LGBT advocate. There isn’t really a good lesson in this part of the story, except, if your Prince Charming (he, she, or they) opens the door for you, and your eyes meet, and you fall in love… for the love of God, don’t ever let go.

So mine is a modernized, but real-life, fairytale story, of a princess whose dreams came true. I’m a princess who took her castle from an embarrassment to something for which people move to Grand Rapids, just to bring their kids. I’m a princess who has created almost fifty full-time jobs in the last four years, with lots more on the way – not just jobs, but with a career pathway, professional development. Something like 30% of my staff is pursuing graduate education – when I say I’m in the business of helping kids chase their dreams, I get to have a broad definition of kids. I’m a princess who added more than two million dollars a year to the local economy and is just getting started. Who taught a large non-profit a thing or two about its own mission. And along the way, found not just the love of her Prince Charming, but a whole lot more besides that.

So, adding up all the lessons along the way, because storytime is almost over, the moral of my story, dear ones, is simple, and complex. It isn’t that magic is real – of course it is, any child knows that. It isn’t that life has purpose, anyone who’s really lived knows it does, and if it didn’t come with purpose, they made purpose. It isn’t that you can survive being different – I’m neither the first nor the best to do that. It isn’t that there isn’t any kind of love except love given freely – I can’t love against my will, and neither can you. It isn’t that we used to leave half the talent on the table, because we wouldn’t hire women, and now we leave talent, still, on the table, when we won’t hire ethnic, gender, or sexual minorities, again, you’re smart people, and you can do basic math. My moral isn’t any of those things.

I tell my team one more thing I want to share with you, which is really the moral of my story. I tell them there are two autism revolutions. The first, and less interesting one, is the one we bring – helping identify kids at very young ages and providing them the intensive therapy they need to learn to talk and listen and play and learn, so that they can chase a future of their own choosing. The second, and far more interesting autism revolution, isn’t anything we do at all. It’s the unexpected, unknown, unforeseeable ways that our kids are going to change the world, armed with the skills we’ve given them. The moral for our lunch story-time is much the same. My diversity moral isn’t that I was better for Hope Network embracing me (although I was), but it is about how Hope Network became better when it helped me stop pretending. My moral is that when we take the risk, collectively, organizationally, together, to let our people live out their fairytales, let them unleash their magic, give them the freedom to rebel against injustice, let them find the loves of their lives, dreams come true. We stop being 501(c)(3)’s and NPOs and all the acronyms and codes and all the blah-blah-blah, and we start being those places where the dreams come true. As leaders, we stop managing departments and we start laying the seeds that will change the world. That is your destiny, and nothing less. You have no idea what your dreams, if you allow them to come true, will do, and you have far less idea what the dreams you build in future generations of warriors and princesses will be or what they will do, but if you follow that path, it’s going to be breathtaking, and just like me, although somedays, it’ll be hard, you’ll never, ever regret it.

Thank you.

Empathizing, Systemizing, Autism, and Trans People

Some of you may know that a big part of my professional life right now is tied up in the early diagnosis of, comprehensive treatment planning for, and early intensive behavioral intervention with kids with autism*. I kind of ❤ them, and I kind of ❤ their families. I am involved more peripherally and less intensively with adolescent/adult autism advocacy and services, but really it is preschoolers by whom I am surrounded on a daily basis. 

I get asked a fair amount about connections between autism and being transgender. One of the dominant pathophysiological models of autism is called the extreme male brain theory. (Some people in the autism world are fairly angry about this theory, but no one has put forward a scientific argument against it nor a better scientific model of the autism pathophysiology.) Although we don’t know exactly why it happens, this theory strongly implicates an excess of testosterone during a critical prenatal developmental period that essentially over-masculinizes the brain (and, to a limited extent, other parts of the body – surprisingly, hirsuitism has an elevated base rate in women with ASD). According to this model, whose chief developer is Simon Baron Cohen, there is a general pattern that some cognitive skills follow, which is:

F > M > Autism

… And a pattern that other cognitive skills follow, which is:

Autism > M > F

Where M is neurotypical (without autism) males, F is neurotypical females, and Autism is people of any sex with autism. As with most cognitive skills, individual differences are far larger than group differences in range, and so these are small averaged group effects (not every man or woman, NT or Autism, fits this pattern for every or even necessarily any cognitive skill, but on average, large groups of them do). The general pattern in both cases is that the autism population is at the extreme end of the male side of the curve. In the first case (where women have the advantage) these skills fall into a category Baron Cohen and others call empathizing skills. They tend to be holistic kinds of skills, like fine-grain modulation of production and detection and production of emotions and nuance, non-literal and non-verbal communicative adjuncts that “spice” language. They also include a number of skills that, at least to a neuroscientist, are related. The male advantaged skills fall into an area they call Systemizing, and they include analysis, classification, sequential task analysis, and a number of other skills.

So to start with, there’s already a theory linking autism with sex/gender. The theory explains the way in which the sex differences in autism occur both in terms of base rate and presentation (and why mild autism may go unnoticed in girls). To add to this, there has been some recent research linking people with autism and transgender people, with substantially higher rates of people identifying as transgender among people with autism than in the general population. One of the hardest things for this data to explain, however, is why there are autistic trans girls/women – if autism biases to male, it would seem there would be significantly more trans men among XX-karyotype people with autism, but significantly less trans women among XY-karyotype people with autism, because the pathophysiology of autism biases all people with autism of all sexes in the direction of at least certain kinds of masculinization.

I commented on this on a listserv recently, and a colleague kindly sent me an article I had not seen. This one looked at Baron Cohen’s Empathizing and Systemizing variables (EQ and SQ quotients for these can be derived from standardized, validated questionnaires, and a fair amount is known about the performance of various groups on these instruments). It found something interesting. In this study, adolescents who were transgender had EQ scores comparable to cisgender males. Whether they were MTF or FTM! The SQ’s were in the middle, without statistical differences from either men or women. In other words, the EQ/SQ measures did not classify trans youth in a way that concords with their self-identified gender identity, when in the group accuracy sense, it can do so for cis/NT youth.

And … this is how I experience the world, in terms of the same questions (you can take the questionnaire and obtain your scores here, although ideally it’s helpful to have an external source describe us, since they may see us very differently than we see ourselves):

20140428-072046.jpg
I may not be perceived exactly this way by others, but this is how I feel, not all the pretending I’ve done all my life, to try and fit in with boys and men … on the other hand, I’m a little skeptical of this idea of the Coach store as “other personality testing” … well, the targeted marketers know me well

It’s pretty much the same way that test that classifies people accurately on sex based on answers to seemingly innocuous questions came out. Both put me overwhelmingly in female territory.

One of my observations about this is that this study is in trans youth. That’s cool and helpful, because many of these kids did not go through decades of forced pretending like I did. On the other hand, generally speaking, younger samples of trans-identified people contain relatively more very binary** and relatively less binary (transsexual) people, although there are also youth who are very binary. I am, by my own admission, and no one is jumping up to disagree, also very binary. I reap lots of benefit from the fact that I made no sense as a “man” but, aside from my height, largely fit right in as a woman. I have two more observations I think might be relevant. One is that, in different contexts, I have actually met probably a fair number of trans people with autism. Of them, only one that I can think of was “very binary” in her appearance. The second is a comment a cis-ally friend made, that in reading Jenny Boylan’s book, she doesn’t hear a woman’s voice, but rather hears a transgender voice. Now, Boylan is pretty binary, and I’m skeptical of my friend’s ability to pick a “transgender” experience out of a blind lineup of male and female voices (or really even for anyone to articulate a proposed nosology for what a transgender voice sounds like). But I have to admit, while I at first pooh-poohed this idea, I wonder now.

Is there a possibility that, rather than FTM and MTF spectrums, what is going on with people who are binary transsexuals (meaning they want to transition, and more specifically to transition into an easily genderable masculine maleness or feminine femaleness) is fundamentally different and separate from what is going on with relatively less-binary people (that is, people who may or may not transition, but do not particularly desire to pass or blend, and who are not particularly seeking an easily genderable presentation)? I’m not saying anyone would be a “true” transgender person and certainly not that anyone would be a false one. I reject this whole line of nonsense that calls me some complicated non-homosexual transsexual male instead of just calling me the intuitively obvious trans woman. If this were the case, is it possible that the former category of very binary trans people would generally classify like cisgender peers who match their gender identity? And this less binary group, whose core experience may be gender role non-conformance (rather than a gender identity that is more directly “opposite” their birth-assigned sex), could in actuality have its own place on the EQ/SQ matrix (and perhaps even on some as-yet-unidentified third orthogonal plane, in which these individuals would be highly differentiated and cis males/females would not, nor would highly binary trans males/females), rather than mirroring male or female values? Like the data on the extreme male brain theory, one would also predict that, alongside gender nonconformance, these brains may be optimized, on average, to do certain things way better than the gender conforming brains many of us have. And put all together, could they, indeed, have transgender voices rather than male or female voices? 

And the final what if: what if among people with autism, this latter proposed grouping were represented at higher base rates, but the former group were not? This might explain the presence of so many trans women with autism and also draw a parallel explanation that could shed light on the experience of less binary NT trans people. It might also explain the fight between the spectrum narrative and the woman-trapped-in-a-man’s-body narrative. I have no recollection of being uncertain, ever, of where I really belonged on the masculinity-femininity continuum. I didn’t know it was possible that I could be a girl, with all the external evidence pointing against it and all the internal evidence pointing towards it. But I’ve always known I don’t have an ounce of masculinity in me. I just didn’t know how to get to womanhood without being killed or benefitting from magic or the technology of an advanced alien civilization. Without being able to experience such a world, I can also say that, for me, being allowed to dress and act like a girl but still grouped with and identified as a boy would not have been enough. The spectrum narrative doesn’t explain why, the first time I put foundation on my face (which is pretty much enough to make me look female), I knew immediately that I was seeing me for the first time. It doesn’t explain why, once I finally accepted the insane idea that I could find my womanhood, I knew exactly what it should look like, whereas I’ve never known how my supposed masculinity could look. To be indelicate, it also doesn’t explain why, when you ask many very binary trans women like me, outside of financial, safety, and outcome considerations, once we start transition, the question “do you want surgical options” this is not much of a question at all. That is, of course I do – given that it is very safe, the outcomes are generally very good, and I can afford it, it’s been a question of when and not if, ever since I decided to transition, and again, once I accepted womanhood, this has always been a foregone conclusion.

Let me stop here and take a really deep breath, because I sound like Professor Bailey from Northwestern, and the next thing you know, I’ll be doing the kind of shoddy research that is performed in gay bars and published in sexology journals. That person and others before him get caught up in trying to prove/disprove transness, as well as a host of other things (most prominently male bisexuality). I don’t care about that at all. And they are connected to traditions that gatekeep access to healthcare services to trans people (particularly access to hormones and surgery). Again, I’m firmly against that – I’m not saying less binary people should not transition, and I’m not saying they should. Actually, all I’m saying is that, while I still kind of hate calls to signal amplify, it may be really important to improving trans peoples’ quality of life to better understand the experiences of less binary trans people. And for that to happen, more of them, both autism and NT, need to tell their stories – neuroscience may also be informative, but it’s a concern that non-binary trans people are doubly marginalized, living trans in a cis world and then damned again by living less binary trans in a binary trans world.

Then, if our experiences are deeply and fundamentally different, us very binary people and less binary people, then maybe we would stop bickering over defining our supposedly common space and instead be allies and co-advocate for our common causes, while respecting each other’s right to have and celebrate their own narratives. I’m not saying I’m sure this is the right answer, but I’m curious. I’ve always thought people with and without autism have a lot to offer each other. I do think very binary and less binary people have a lot to offer each other, too. And what if transgender and autistic people were more involved in the process of trying to identify sub-types or sub-entities? Would we ask different questions based on our desire to help each other and understand ourselves, or would be just as driven to be “right” or to prove/disprove our own experiences’ validity as the sexologists are?

* With respect, I am just going to say “autism”; I mean people diagnosable with autism spectrum disorders, including Asperger’s Disorder, although my hope is that most of them are thriving and living life. I’m also bypassing the question of using the phrase “people with autism” instead of “autistic people” – I use the former because I work with children, and their parents seem to prefer it, but I understand why and respect that autistic self-advocates frequently choose the latter. Finally, I generally use neurotypical, or NT, but I celebrate neurodiversity and I do also like what some people do, which is to say autistic and say allistic for non-autistic people

** I’m making up the wording as I go, sorry, but what I want to delineate is not the difference between genderqueer/genderfluid people and transsexual-identified people, but rather between people who identify deeply with the binary and those who identify weakly with the binary, whether or not they choose hormones, transition, surgeries, and so on.

Do Social Networks Drive Autism Underemployment?

This is an historical post from an earlier blog, Adopted Son of the Autism Family, which I had before this current blog. It is re-posted without modification (other than this introductory sentence).

This is a quick thought of the day, with apologies for good, solid blog posts being lacking from me over the past few weeks. Then again, it’s too much for me to squeeze into a tweet, and my mother thinks my blog posts are too long, so perhaps this will appeal to her!

Take a look at this NYT Blog.

NYT Opinionator blog post from today

NYT Opinionator blog post from today

They advance a very interesting idea that social networks function to extend and strengthen the secret connections that keep the wealthy (and dominant racial/ethnic/cultural groups) enfranchised. They do it by enhancing the ability of “who you know” to overpower “what you know” in being the person picked for the desirable job that becomes a great career or a stepping stone. It makes a lot of sense, since social networks allow easy access across strata of society to people, as long as they have the right connections (for instance, I routinely tweet with people who have 1/10 or 1/100th as many followers as me, or 10x or 100x as many followers as me, and we have a two-way interchange, although primarily because we are connected by the Autism Family). Without the right connections, however, Facebook, Twitter, and the like, are just as closed a door as any that existed before social networking.

We already know that people with autism are unemployed and underemployed compared to other people at their cognitive levels. This spans across the Spectrum — cognitively impaired autistic people are much less likely to work than people with MR without autism. High functioning autistic people with college degrees or graduate degrees are also less likely to work than their “neurotypical” peers. I talk to parents all the time about the fact that much of this has to do with people with autism struggling to read the unwritten messages and follow the unwritten rules in job searches. They rock out in their classes and get high grades, but they don’t talk to their professor or their peers about their interests. They don’t engage their departments to parlay their interests and academic success into internships, volunteering opportunities, and entry level jobs. This is all about unwritten rules and networking. Are we overlooking one of the most powerful tools thus far in the 21st century, in the form of these social networking sites, and what they may be able to do for autistic people?

We know (look at my timeline on Twitter, or check out the #AutismFlashFollow or #autismbullying hashtags!) that we have people with autism thriving on social media, as well as some who engage in it but are not engaged back. Maybe we need to think more constructively about helping people with autism develop social links on social media that are likely to generate jobs (because they may not automatically engage in using social media this way). Maybe the broader autism family needs to help build those links between people with autism on social media and the decision makers and other people who hold the keys to these invisible doors. What do you think? And if you’re an autistic person, have you used social media to land a job? Would you?