Thursday, September 29, 2016

Unbroken Brain Author Maia Szalavitz on Autism, and Addiction

[Image: "Unbroken Brain" book cover:
Aqua background with out-of-focus
colorful discs on the left, yellow text
reading "A Revolutionary New Way of
Understanding Addiction," and then
larger multi-colored text reading,
"Unbroken Brain."]
Parallels between autism and addiction abound. Both are the results of atypically wired brains, and "treatments" for both tend to ignore the humanity of the people in question, as well as the ways in which they think, learn, and respond to the world.

We recently spoke with science writer Maia Szalavitz about her compassionate and sharply informed book Unbroken Brain: A Revolutionary New Way of Understanding Addiction, why social assumptions about autism and addiction are largely based in misunderstandings, about the consequences of drug policy based in racism and bad information, and about her own past addiction, and autistic tendencies.


Thinking Person’s Guide to Autism: I wanted to talk about the parallels that keep coming up in your book, between addiction, autism, and other neurological conditions, specifically “treatment” approaches. Whether we’re talking about Alcoholics Anonymous and Twelve Step Programs, or Applied Behavioral Analysis, people assume these approaches are gold standards, assume they are evidence-based when in fact they are not. So how do these approaches become The Standard?

Maia Szalavitz: One of the interesting things about the parallels is that in both cases, aberrant behavior is mistaken for the problem. So the idea with autism is that “if we can just get the kids to act normal” -- or so-called “normal,” -- they’ll be fine. Similarly, the idea with addiction is that “if we can just get them to stop taking these drugs,” there’ll be no problem.

And of course the reason autistic people engage in stimming or avoidant kinds of behavior is often because of sensory issues, and other neurologically-based reasons. And similarly, with addiction, it’s not like people are sitting there saying, “Let me go and be a bad person today! Let me go do some drugs!”

In both cases, the problem is that we don’t ask why people are engaging in this behavior. We don’t ask, “What purpose does this behavior serve for this person?” We just assume there is something deeply wrong with them that we need to fix. And so similarly, horrors have been visited on both groups of people in the guise of treatment. In autism, you've got aversives; it is astonishing and disgusting to me that places like the Judge Rotenburg Center are still open. But tactics in addiction treatment are similarly about, “let’s break them down, let’s abuse them, let’s isolate them, let’s be as cruel as possible in the hope of breaking their horrible personalities so that we can replace it with a more acceptable one.”

I previously wrote a book called Help at Any Cost, which is about abusive treatments for addictions, particularly with teenagers. And we now see the Rotenburg Center advertising to parents who have a so-called “troubled teen,” and usually that tends to mean, “my kid is doing something I don’t want them to do,” or they’re doing drugs, or both. It’s kind of shocking that there’s that direct merger.

Maia Szalavitz
Photo © Ash Fox
[image: white woman with long
curly red hair, leaning against a
metal railing, and smiling.]
Also, as a person who is somewhere on the spectrum, it horrifies me that seeking help for addiction was either going to be devoted to destroying my personality, or it would be the Aspie person’s worst nightmare: constantly in public, no privacy, people constantly focusing on you — all that group stuff, all the time. Which is incredibly draining, especially as I was already using drugs to try and deal with some of the sensory and social issues I had. So the idea that the treatment for it was going to be “let’s mash your face all that,” essentially, was just utterly horrifying to me.

I’ve been speaking to a lot of audiences using the saying that “if you’ve met one autistic person, you’ve met one autistic person,” and asking, “why aren’t we applying this to addiction,” because in addiction the big problem is, “we think there’s One True Way, and everyone with addiction is exactly the same, everyone is a lying, manipulative, horrible, bad, nasty person, everyone with addiction needs to be broken down, they need to hit bottom, they need to do the Twelve Steps, they need to do this or that.” Really? Because with any other psychological or developmental or neurological condition, we’d recognize that human beings are unique individuals.

Every time I call up a neuroscientist, the first quote I generally get is, “It’s a very heterogeneous condition.” But with addiction we’ve just thrown that idea out the window, and decided that everyone’s exactly the same all the time. And I think a lot of that has to do with racism and the scapegoating of addicted people as it does with very bad policy, such as the War on Drugs.

TPGA: You were very clear in your book that most drug policies are not based on evidence, they are just based on What People Have Been Doing, and that is why, for example, marijuana is illegal, and alcohol is not. But when you look at the comparative statistics, in terms of things like overdoses or deaths, those policies don’t make any sense.

Szalavitz: What’s odd is that people want to believe our laws are rational and our systems are just. And so people assume, “Well, I can’t see anything on the surface that makes marijuana more dangerous than alcohol, but clearly some FDA-like agency must have decided at one point that tobacco is OK to be legal, and alcohol is OK to be legal, and marijuana is just far more dangerous." And no, that’s not what happened, you can’t possibly have a rational decision-making group that would come to that conclusion.

TPGA: What worries me, if we can go back to the autistic mindset for a second, is that autistic people are often social justice-oriented and strict rule-followers. So if they internalize these policies  — even though they don’t make rational sense — then it’s really not going to help their self-esteem if they get into a situation where they’re addicted to illegal drugs.

Szalavitz: I think the rule-bound issue is really interesting, especially among those who are both autistic and have addictions, because you obviously have to violate that rule system. For me, drugs were a special interest that people wanted to hear me talk about, as opposed to operas or science fiction, which drove people crazy. I do think that the rule-boundedness and social justice-oriented mindset aspects of autism are fascinating and really under-studied. And I suspect that is protective for some autistic people, in terms of developing addiction. It’s similar to anxious people, and people who are just generally very cautious, who would usually be afraid to try drugs -- but if they do try them, and they realize that, “wow, this works for the social anxiety,” that’s when the problems arise. Which is interesting, because for many people the problems that are associated with addiction are pre-existing -- and that’s certainly the case for autistic people who end up trying things, but it’s just a different sort of pre-existing thing.

TPGA: Our Facebook forum contains autistic people, parents of autistic people, and professionals who work with autistic people. And often they have positive anecdotes about marijuana, as in helping significantly with anxiety. And we have to say, “That’s great, I really wish people would research that area more, however it is illegal in most states.” Because we do need research into other options for autistic people to treat disabling conditions like anxiety, besides prescription drugs. And of course some people depend on prescription drugs, and that shouldn’t be stigmatized either. But it seems like marijuana, for some people, is more like drinking a cup of tea to relax.

Szalavitz: It’s an infinitely safer drug, compared to something like a benzodiazepene, or an anti-depressant. But the point is that people should be able to have access to the things that work for them. And the reason our drug laws are the way they are is because of racism and colonialism — full stop. It has absolutely nothing to do with the relative dangers of drugs. And once we understand that, we should be opening the door to doing research on things like marijuana, like psychedelics, and other things that could benefit people on the Spectrum in a variety of ways. So I’ll be very interested to see how MDMA research in autism goes. But these trials are very slow to be done because of intense regulations, and that’s ridiculous. I actually retweeted Bernie Sanders the other day, because he was saying that marijuana should not be in the same category as heroin in our legal system. My comment was that we shouldn’t even have that category, Schedule 1, because the whole idea of putting something in a category that says “this has no medical use” without doing any research first is inherently nonsensical. Yet that’s exactly what we do, all the time.

And this is about to be done with a drug called kratom, which is opioid-like, and which a lot of people find useful for pain, or for withdrawing from more serious opioids. Yet the DEA is about to make kratom illegal because it’s “scary” and people could get physically dependent on it. Even though it’s a substance that has been used for 4,000 years in Asia, without people overdosing on it,  they’re saying people can’t use it as a substitute for opioids, which people are overdosing on, in massive numbers. This is not something we should be banning, at this point. Would I have liked the FDA to have tested it before it was marketed? Absolutely. But that’s not the world we’re in.

TPGA: Your book also mentioned how limited research is on potentially beneficial drugs, when they are restricted substances. This is a problem for autism research, in which this area is under-studied, especially as research shifts to focus on ways to help autistic people instead of prevent them, or cure them. It seems like this will get in the way, both in addiction and in autism, in helping to understand how brains wired that way work, or are stimulated.

Szalavitz: It’s been fascinating to me, talking to so many people after the book came out, how many said they previously would not have identified as being anywhere on the autism spectrum, and who said that they had sensory issues. Or that their kids did. And that is another area in which we really need more research, to figure out what is really going on -- how much of substance use is self-medication for things like sensory issues.

TPGA: People don’t realize how much of autism is now thought to be genetic, because of the autism conversation getting derailed by the vaccine causation hoax. So, like your own audience members telling you, “Wow, I really do have a lot of these traits, and I hadn’t really thought about that" -- we also get that in the TPGA community with so many parents. And I think that goes back to one of the themes in your book, in that people don’t really understand how these differently-wired brains work. I think these tendencies are much more common than people suspect, even if people don’t have an intense enough cluster of them to qualify for diagnoses.

Szalavitz: I think that’s certainly true, and I also think that what I was trying to do, in part, with the book, is to show how development is like a spiral: it unfolds over time. And so a small influence at an early point can create an entirely different pathway, can lead to autism or OCD, depending on what kind of environmental stuff is going on. I find it interesting that a lot of the genes associated with, for instance, schizophrenia, and all other sorts of psychiatric and developmental conditions -- a lot of those genes are in common with each other. So the particular flavor, or particular disorder, or particular set of traits that you might develop -- it’s your genes unfolding in your social, emotional, physical, and probably chemical, and all kinds of other environments. I think nature has made us such that we flexibly respond to the environment.

There’s a personality test for the prevention program that I’m writing about right now, and it can identify about 90% of the kids at risk of developing drug problems. And in preschool you can pretty much tell the same thing, by looking at the outliers. Now, not all of those outliers are going to become addicted, by any means. But all of those outliers are generally going to remain outlying. Even though the kid who’s sensation-seeking, and really into thrills, is sort of the opposite of the kid who’s really cautious and nervous, both of kids are at risk, in terms of addiction.

TPGA: So whether you’re a seeker or an avoider of sensory input, that puts you at a higher risk?

Szalavitz: Yes, exactly. Obviously people on the [autism] spectrum might bounce back and forth. But to prevent drug problems based in sensation seeking is going to be very different from those for sensation avoiding -- as makes common sense.

TPGA: You talk a lot about addiction being a learning scenario, often because people associate drugs with feeling better. And I really liked your example of how patients who are discharged from the hospital with “hospital flu,” didn’t realize they were actually going through withdrawal. But since they didn’t learn that they were dependent, they didn’t seek the drugs afterward. Could you talk a little bit more about learning, especially about it being maladaptive?

Szalavitz: Addiction is basically a form of learning in the brain’s motivational system, kind of like you’re falling in love with a drug, rather than a person. And that is a very deep form of learning. Except for some autistic people, it’s generally a lot easier to remember your first love than it is to remember algebra. Autistic people, on the other hand, I think can fall in love with systems. You can get that same kind of attachment to a system that other people get to people.

So that exception aside, what happens there is that you learn that this person, or this thing, or this system, relieves your stress -- and if you’re away from it for too long, you get stressed. And you have to learn that in order to be addicted. Otherwise, you fundamentally don’t know what to crave, like those people who become physically addicted to opioids in the hospital, then go home and they think they have the flu, when they’re actually going through opioid withdrawal. They don’t know a drug will fix that; they just think “well, that was a nasty flu,” and they get on with their lives.

And this is why it’s important to realize that a baby cannot be addicted, because a baby who is born physically dependent on opioids doesn’t know if it needs a diaper change, or daddy, or food -- or a drug. Because it’s a baby! It doesn’t know; that association cannot be made, and it can’t go out and get drugs and continue using them despite negative consequences, again for the very simple reason that it is a baby.

People always throw learning and development together, and I think that’s right because development is the process of learning. And addiction is a direct problem with learning, because you don’t learn from punishment in relation to the substance. This is why the way we deal with addiction in this country is so ridiculous, because the condition is defined by compulsive behavior despite negative consequences, and therefore negative consequences as a fix is an absurd idea. So that's one fundamental reason why addiction is a learning disorder.

Addiction also involves misdirected learning in the motivational system, which is what makes you persist despite negative consequences. If you persist despite negative consequences to master a system, be with your loved ones, or take care of your kid -- that’s productive and evolutionarily sound, pretty much. But if that same persistence is directed towards a drug, it can become very destructive.

And the important thing about defining addiction as a learning disorder -- which, by the way is not a weird or far-out definition, but is in the summary definition in the DSM, and also used by the National Institute on Drug Abuse -- is that addiction is not physically needing something to function. It’s a compulsion that kicks in despite negative consequences. And so if the consequences of a physical dependence are positive, i.e., your pain gets relieved, and you feel better, and you’re more functional, that is just physical dependence. That is not addiction. And that’s why maintenance drugs can be useful in some addictions. But if you have a compulsive behavior that is occurring despite negative consequences, that’s where it gets problematic.

I’m only interested in the behavior when it gets problematic. I don’t really care if someone gets high and enjoys themselves; that’s none of my business. My business is only with people who are made unhappy by not being able to stop themselves from doing something that is no longer productive.

TPGA: I also wanted to ask you about tolerance versus sensitization. Can you explain what each term means, how they vary in autistic brains, and how they can make autistic people more vulnerable to addiction?

Szalavitz: I have to start out by saying that some of this is speculative, but in terms of the definitions, it is not. The fundamental process of tolerance is where you repeat a behavior, and over time it becomes boring, because you know it very well and it becomes boring. Now, for autistic people, that process seems to occur less quickly -- we love repetition. Sensitization, in contrast, is where over time, a smaller and smaller stimuli elicits a greater effect.

With tolerance, you need more and more to get a greater effect; with sensitization, it’s less and less. Now, it would be really great if sensitization happened to pleasure, because that would mean you could take less and less drugs and get more and more high. But that doesn’t happen, unfortunately. You get sensitized to anxiety, and noises, and things that are unpleasant. And this makes evolutionary sense, because if one time you get a shock when you do something, you should be quite alert to all the circumstances around that. And you should be a little bit scared of that thing.

But I think in autism, there’s some kind of over-sensitization that clearly takes place with sensory things for some people, and you don’t become tolerant; you become sensitized. I live in New York City, which is very, very noisy, and I have my beloved Bose headphones that are noise-canceling. But if I wear them all the time, I get really sensitized to noises. So I have to stop myself from doing that. I wear them a lot, but it’s funny, because those two aspects are acting in concert.

And what’s interesting is that these processes happen at a fundamental level in the brain: sensitization and tolerance happen on a neural level that you can measure in sea slugs. And these things are fundamental to learning; if you didn’t have sensitization and tolerance, you would never know what was new, and you would never get over a fear of anything. On the other hand, a pleasant thing would continue to be equally pleasant over time, instead of getting boring. Those things are just critical to learning, because what you want is to become tolerant to aversive things that you have to deal with, and sensitized to aversive things that should actually scare you, and you should get away from.

You need to get tolerant to things you’re learning, because once you’ve tolerated it, you have kind of incorporated it. Listening to the same song over and over again provides a ton of pleasure, even listening to the same song because there’s so much different stuff going on in it, but at a certain point, you have incorporated that, and it’s boring, and you need to listen to something different. This is why I actually like really complicated music, because there’s so much different stuff -- in really great jazz music, you can almost listen to it infinitely because there’s so much going on.

Maybe I should write a book about tolerance and sensitization in general, because they just explain so many parts of life!

TPGA: I was wondering if you’d be willing to talk about your own autistic tendencies? I know you already have, a bit -- but specifically with regards to the “Intense World” theory. And also, as the Aspergers diagnosis and wider diagnostic criteria for autism didn’t exist when you were little, how different might your life trajectory have been if you’d been diagnosed as a child, and supported from the get-go?

Szalavitz: Somehow, when I was a little kid, I decided that my autistic traits made me “bad.” I was much more interested in systems than people, I was reading at age three, I had tons of sensory issues, and “Intense World” pretty much describes my sensory experience as a child -- it was just very overwhelming, sensory-wise. In order to cope with that, I really tried to set up the environment the way I liked it, which was then perceived as being bossy. People clearly thought I was smart, but over time I came to feel like being smart was the only valuable thing about me, and so the only way I was ever going to have social connections -- which I deeply wanted -- was to be very successful, and people would at least pretend to like me. I thought that was the best I could do.

I feel so bad for myself as a child! Imagine living with that — no wonder I needed heroin. I had this thing that was lurking in my personality that I never, ever disclosed to anyone. So I think that if I had known that those traits cluster, that they are part of a syndrome that can have pluses and minuses like any other personality, I hopefully would not have developed that kind of self-hatred. I wouldn’t have thought I was somehow extremely defective, somehow morally bad because of my disinterest or difficulty with socializing when I was really little. I do think it would have been great to have that. 

But there are people who get an autism diagnosis and find it stigmatizing, still develop self-hatred.  When I found out about Asperger’s through an article in the New York Times, the one thing that stuck in my mind -- aside from “I’m really like that” -- was that when he was he was being really “aspie,” his wife would tease him with a shared joke and say, “don’t be an ass burger!” That was the first time I’d even heard that there was this collection of traits, and that -- holy cow! -- have them. And I realized, “oh, okay, that’s why all these different things have occurred. Because on the outside, it doesn’t make sense for all these things to occur together: why would you be really literal, and really rule-bound, and yet very different? Why would you have these sensory things in conjunction with the memory stuff, and having difficulty with socializing?

The reason I like the Intense World Theory, was that, at least for me (although I think that it might not apply to some autistic people) it made a sensible trajectory of what happened. With sensory overwhelm, systems were easier to understand, so I focused on them, because people were difficult. But it wasn’t that I was unempathetic, or had no social brain. It was more that if your senses are constantly being assaulted, and if you are constantly actually empathizing with people and feeling horrible for them, and it is an intense experience, then rather than helping them you might just run away because it is all too much. And that doesn’t mean you don’t care.

TPGA: Understood. I’ve taken to describing my son as an “emotional resonator,” because he gathers everyone’s emotions, and then he amplifies them, and then he can’t always deal. I think that happens to a lot of people. Like you said, if you feel it, and you don’t know how to handle it -- especially if those feelings are so much more distressing or intense for you than the person it’s even happening to, then it’s really hard.

Szalavitz: Which is a very weird thing! But that happens, yes.

TPGA: Which leads to my next question, about self-soothing and self-regulation: Given how important they are: not just for autistic people, but for people who have addictive tendencies, why do other people so often feel the need to block these behaviors? I understand that some forms of self-soothing are not generally considered socially acceptable, but suppressing them can increase stress, which then makes you more vulnerable to addiction.

Szalavitz: When I was growing up, I had to be touched carefully, because it was overwhelming. So I would avoid, and then my parents would avoid. But I really did need the physical contact, so it was weird. Because most people do get soothed by being hugged, or held, and when you have less of that because you can’t take it, that is difficult. And if you’re doing odd repetitive behaviors, people are going to think you’re weird, and that is not going to help you soothe yourself, when people don’t tolerate or understand what you're doing.

In order to be regulated -- and I think this must happen early in development for autistic kids, very early in development -- you can’t regulate your stress system without your parents or caregivers. The people who are taking care of you are regulating your stress system for you, and this is why neglect can be so devastating for infants. So in order to be able to turn that system off, you need that interacting with a parent, and when the kid is getting overwhelmed by the interaction, the nurturing cycle can get interrupted -- which can be very difficult for both people involved. I think understanding how you develop self-regulation in an oversensitive nervous system is something that we need to learn.

It seems like the parents of today’s autistic kids are much more sensitive to sensory issues than they were in the past. And that is bound to be helping the kids. But it’s a hard thing to figure out. And it will vary with the child’s level of ability to self-regulate. But all these things: figuring out ways for the child to self-soothe that are acceptable, figuring out ways to change the environment so that other people will be more understanding, and figuring out ways to get those needs met in the most helpful way -- that’s where we need to get to. If you can’t self-soothe, you can’t self-regulate. And if you can’t self-regulate, it’s very hard to do anything else.

TPGA: You also mentioned that, as kids who don’t naturally self-regulate get older, get into middle school -- if they’re prone to blurting things out, or they cry easily, or they’re obviously anxious -- that can make them easy bullying targets. And then that compounds their self-image issues, and their risk for addictive behavior.

Szalavitz: True. I do think that’s getting a little better now, because I do think schools are recognizing that bullying happens to these kids, and also it happens less if you have a good teacher and a good school system that is devoted to reducing bullying.

When I was growing up, the teachers’ attitudes were that “kids will be kids,” and some of the teachers themselves even stigmatized some of the bullied kids. If the kids get the signal from the top, that this is not tolerated, and that the kids who stand out are just as good and just as accepted as anyone else -- that won’t make bullying go away, but it can reduce it dramatically, and the more you reduce it, the better it will be for those kids.

But you can also help the kids to self-regulate, and also teach everyone to know: before you get dysregulated, what are the signs? And how do we help prevent that meltdown or bad experience from happening? Because oftentimes there are specific triggers that the person may or may not be aware of, and if you know about them, and can get everyone to the point where they’re aware, then they can do something about it before it gets to the over-intense part,.

TPGA: It seems that parents and teachers really freak out about limiting exposure to drugs, but it also seems that kids trying drugs to fit in or copy their peers is only about exposure, and it’s actually the social isolation coupled with self-soothing tendencies where the addition risks lie. And that it’s not such a big deal if people try drugs, if they don't have that risky underpinning.

Szalavitz: Exactly. The reality is that teenagers are programmed to take risks and do dumb stuff. What we want to do is reduce the harm associated with those risks. I do not think it is realistic to expect that teenagers will never do dumb things, which include trying alcohol and drugs. What we want to do is have them do the least harmful dumb thing. And if they have one of these outlying temperaments, arm them with coping skills before any exposure, so they don’t try something and then say, “oh my God, this is the thing I’ve been looking for all of my life!”

What I often tell parents to say to kids is, “Obviously, we don’t want you to do this. But if you do try it, and it seems like the most amazing best thing ever that you want to do every second, that is a warning sign that you should not be doing that. And that’s a hard message to get through! But if people realize that something feels like their savior, that’s a problem -- and we need to try to get them to a point where they don’t need a savior. Let’s try to get you to the point where you just feel OK most of the time, so when you do try one of these things, you think, “Huh, this is interesting, but it’s not like I want to give up my life for it.”

Because eighty to ninety percent of people who try even the most extreme drugs do not get addicted. The ten to twenty percent who do get addicted tend to be people with outlying nervous systems, for one reason or another. Fifty percent have some kind of mental illness, two-thirds have some kind of severe trauma issue. I thought I was especially weird, and maybe one of only three people in the world, to have both Asperger’s and addiction, but it seems like it’s actually a more common experience than I’d imagined. And I’d love to talk to some other people, and write about it.

TPGA: And that seems to extend to conditions like anorexia?

Szalavitz: Yes, I’ve actually written about autism and anorexia for Time and some other magazines. And it’s so sad to me, when I talked to some of the Aspie/Anorexia people. For women, it can be a real trap, and a sad commentary: You could have been obsessed with math, but you got obsessed with your weight. (Though maybe those two things would have never substituted for one another.)

TPGA: Sure. But it seems like it’s about identifying these tendencies early, as well as the environmental conditions that can direct those tendencies in one way or another, and trying to give people coping skills so they don’t choose the path that’s maladaptive.

Szalavitz: Exactly. The Neurodiversity movement, and disability rights in general, are so interesting, and I hope to make more connections between that world and the addictions world. But it’s hard, because addiction is still very stigmatized as being something that you choose, and it’s illegal, etc. So sometimes people in the disability and mental illness world have been like, “Oh no, you guys aren’t like us!”

But the things we can learn from each other, are, I think, enormous; and provided that we avoid the trap of “I’m more stigmatized than you!,” there are remarkable things people can learn to get rid of stigma across these categories, and also to benefit from the talents and abilities that people do have. With addiction, it’s pretty obvious, because we are literally throwing people in prison -- but very talented, very loving, very wonderful people are being kept out of the world because of these prejudices and stigmas, and we do not get to benefit from their presence if we keep this up.

TPGA: And we are failing to properly support them in the ways that they deserve.

Szalavitz. Yes. And it’s not like we’re saying, “We like you, you’re talented, you’re valuable, we’ll get you out of there. But you don’t have much talent, so we’ll leave you there.” That’s replicating the problem. I think Ari Ne’eman is very good on this topic: we need to value all people. And the good side effect of doing that is remarkable stuff comes to the surface.

TPGA: And people are allowed to be in their best space.

Szalavitz: And I hope to see more of this intersection being explored.

TPGA: I was wondering if you wanted to talk about media depictions of addiction, like the lead character in Nurse Jackie, or the Twelve-Stepper sharks in Finding Nemo?

Szalavitz: In Nurse Jackie, from what I’ve heard, at least they show her competence. Otherwise, the problem mostly with portrayals of addiction in pop culture has really been the dominance of the Twelve-Step Program as the only way. We never see characters who are on maintenance and doing well. Though I do think we are getting towards more subtle and better portrayals.

TPGA: As well as the prevalence of and increase in harm reduction approaches?

Szalavitz: I have been asked to speak about the book around the country, and there does seem to be a new openness to harm reduction approaches that was unthinkable even ten years ago. I am sad to say that a lot of that has to do with the perception of our current opioid problem as being a “white problem,” but now that we’re there, let’s move forward and make sure people of color aren’t left out of the conversation.

Tuesday, September 13, 2016

Rosemary: The Hidden Kennedy Daughter

Today would have been Rosemary Kennedy's 98th birthday. In her honor, we are are featuring autistic writer Kate Ryan's review of the book Rosemary: The Hidden Kennedy Daughter, by Kate Clifford Larson.


Rosemary Kennedy
[image: Black-and-white photo of a smiling white young
woman with dark 1940s-style coiffed hair.]
Growing up in the Boston area, I knew about the Kennedys.  It seemed to me, as a child and an adult, that everyone knows about the Kennedys, and their big, boisterous Catholic family that would leave such an impact on Massachusetts and the world. About their political aspirations and horrific assassinations, about their charitable foundations, about their triumphs and tragedies.  About Jack and Teddy and Eunice and Rose.

Until recently, however, I have known very little about what is perhaps one of the saddest tragedies to come out of the Kennedy family: that of Rosemary Kennedy. A new biography by Kate Clifford Larson brings much-needed attention to this long-forgotten member, who had a huge impact on generations of Americans but who is still, today, not well known. This is a shame, for Rosemary deserves to be remembered.  She deserves to be given the attention long denied her. Her life was lived in the shadows, but Larson’s book will hopefully enlighten people who have never heard of her, or of the importance of her legacy.

Rosemary was born in September, 1918, at the height of the Spanish influenza epidemic. Although Larson is careful to never diagnose Rosemary, it seems clear by the accounts of her birth that she was deprived of oxygen and had brain damage. This was caused by her mother, Rose, being forcibly blocked from delivering the baby that was already in her birth canal until the doctor arrived. This most likely indicates that Rosemary had some sort of cerebral palsy, rather than a genetic condition.

I have seen the rows of numbered graves at the Fernald cemetery. (A former institution outside Boston.) I have passed the red-brick institutions that once held my brethren against their will. I know all about the horrible conditions that disabled people were forced to live in, away from society and so-called ‘normal people.’ But I have never before stopped to consider what life was like for people with disabilities who were not institutionalized young, those whose parents had money and power and who were determined, above all else, to make their child normal.

It is important to note here that Rose and Joe, Rosemary’s parents, were in all likelihood good people, kind people. However, they were also products of their time, a time in which disabled people were hidden because their family members were ashamed of them. Rose and Joe undoubtedly loved Rosemary, but they had absolutely no resources or references to deal with a disabled child. They seemed to operate from the idea that if they could just find the right program, just make Rosemary do this or that, then she would become non-disabled. However, this is not how the human body works, and so school after school, placement after placement, doctor after doctor failed to make Rosemary’s disability go away.

Rosemary’s story resonated very deeply with me. I recognized the shame behind her parents' actions as echoes of how my family responds to me. Larson writes, “Their expectations were clear: they wanted Rosemary to progress in school as though her intellectual limitations were something easily overcome ... Rosemary seemed high-functioning in many ways.” (pg. 69) I distinctly recall sitting in an office with my father, trying to explain to him exactly what my autism spectrum diagnosis and sensory processing problems meant, and at the end of the meeting he looked at the counselor and asked ‘But if she really wanted to, if she really wanted to, she could, couldn’t she?’

If only it were that simple!  But no matter how much money you throw at them, disabilities cannot be erased or overcome, they can only be dealt with. Rosemary had many strengths; she was very social, enjoyed being around people, liked learning, and above all, was very keen to please her family. This, too, resonates with me, and I feel such a well of sorrow and empathy for Rosemary.  She tried so hard, but her efforts were seldom rewarded. Shuttled off to various schools and situations, she wrote desperate letters home to her parents, promising them that she would be good, that she would try to learn this or that, that she would lose weight (her mother was apparently obsessed with the fact that her children not be fat) and that she loved them so, so, so much. It is clear that Rosemary wanted, above all, to be accepted and loved, and the message she received from society and her parents was that if she could just work a bit harder, then she would be worthy of love.

If only that were so! If only her family had the slightest idea that a disability was not something to be ashamed of. If only they had known about neurodiversity then. If only -- but there is no point in saying ‘if only.’ If only their money could do any good.

Rosemary, for all of her parents' implicit and explicit rejection of her, lived a full, happy life for her first two decades. She traveled all over the world while her father was a diplomat in England, and later on found real joy and purpose at a Montessori school there. Unfortunately, the second world war (which started in Britain in 1939) interrupted her education, and she came home, undoubtedly depressed, anxious, and angry.  Like many disabled people, Rosemary was very, very good at ‘passing’ as non-disabled, and there is no doubt in my mind that she would have been very frustrated at not being able to communicate the way that she wanted to. She became angry, chafed at the limitations imposed upon her.  She was growing up, but her parents had no idea how to deal with this fact.

Ultimately, her father took matters into his own hands, and this is where the life of Rosemary took a tragic turn. Her disability wasn’t a tragedy -- her family wasn’t a tragedy -- her life was not a tragedy -- but her lobotomy, an operation where a surgeon literally went into her brain and poked around with a stick -- this was the tragedy of Rosemary’s life. The operation took place in 1941. Rosemary lived until 2005, but she would never again be the lively, vivacious socialite who charmed the English press. She lost most of her ability to speak and, for a time, her ability to walk. She did not seem capable of doing many of the things she had previously been good at. Her personality was dampened. She was sent to live in an institution in Wisconsin, in a private cottage with around-the-clock care by nuns. With the exception of a few vacations, she would remain there the rest of her life.

Larson worked from primary sources. She utilized never-before-seen letters and papers from the JFK library. She also pointed out that a lot of material, such as Rosemary’s medical records, are permanently sealed and so there are questions that will never be answered, especially about the lobotomy. One thing that she cleared up right away is that despite the fact that rumors say Rosemary only had learning disabilities, in fact, Rosemary had intellectual disabilities, or mental retardation, as they said at the time. (The R-word is used quite a bit in the book in quoting people of the past, but it is never used by Larson except in reference to the history.) Rosemary was never able to get beyond a fifth-grade level in writing and math, was very clumsy, and had a very hard time with basic executive functioning skills. Due to Larson’s reliance on facts, and her careful consideration to never extrapolate, it is hard to get a handle of exactly what Rosemary’s psyche was going through and how she felt at various times throughout her life. My guesses of her despair are really only conjectures based on my feelings in similar situations.

The book is very well-written, and although it is not a particularly fast-paced story, it is a very interesting one. The author does not assume that we know anything about the Kennedys to begin with, and so takes care to expand upon and give context to all of the people and world events that happen. She is very non-judgmental, neither condemning nor condoning, simply stating the facts as she researched them. There are over a dozen pages of wonderful pictures, many of which show how very lively and joyous Rosemary was before her lobotomy, and the sad contrast with the hunched-over, dull-eyed person that the surgery created. There is even an example of Rosemary’s handwriting, in the form of a letter she wrote in her early twenties. (When apparently they did not have lined paper yet? There are a few references to the fact that Rosemary could not write in a straight line and accommodations being made for this, none of which, apparently, was to give her lined paper. Maybe it wasn’t invented?)

It is a good book, but for all that it is about a disabled woman, there is little background about disabilities and disabled women in history. It is strictly biographical, telling the story of one woman alone, but I think for the sake of non-disabled readers that a little bit of disabled people’s history could have been also told. It is apparent that Rosemary was pushed in with non-disabled peers again and again, and I could not figure out if she was ever to experience the wonderful community that exists when a group of disabled people come together. Institutionalization and isolation may be terrible things, but discovering that I was not the only person with my experiences was an amazing feeling for me, and I hope that Rosemary got to experience this too, at least a little bit.

The first two-thirds of the book are devoted to the first quarter of Rosemary’s life, and indeed, it seems as if Rosemary did most of her actual living before her lobotomy. It was likely never explained to her what the operation was for or why she was suddenly unable to do so many things, but she would have gone into the operation cheerfully enough simply because she wanted to please Joe so badly. Cloistered in Wisconsin, Rosemary enjoyed swimming, walking, trips to downtown, and other small delights, but she would never travel again except to the family compounds in Florida and Hyannis, Cape Cod, Massachusetts. She would never meet kings and queens or the pope again. Was she happy after her lobotomy? There is very little evidence to say that she was or she wasn’t.

Yet ... The Kennedy Day School for special needs children in Brighton, Massachusetts, was founded and funded because of Rosemary. The Special Olympics, an organization that gives great joy and a sense of achievement to people of all abilities, was founded by her sister Eunice, who remembered how much Rosemary enjoyed playing outdoors and doing sports. Best Buddies, International, and the Eunice K. Shriver Center -- a disability think tank in Boston -- can also be directly attributed to Rosemary. These institutions, which do so much good for so many people, are not just the Kennedy family’s legacy. It is these things that Rosemary should be remembered for. She ensured that the Kennedy name would be forever associated with disabled people. Her younger brother, Teddy, would be one of the architects and strong proponents of civil rights laws for people with disabilities, including the Individuals with Education Act (IDEA) and the Americans with Disabilities Act (ADA).

When you see a wheelchair ramp, think of Rosemary. When you see a child in an inclusion class, think of Rosemary. When you read this, an article written by a person with a developmental disability, think of Rosemary. These are her legacies, this is what she leaves behind.

Thursday, September 1, 2016

My Experience at AACC 2014

[image: Black horizonal rectangle with white text on the left reading "Association
For Autistic Community," and a green, blue, and red infinity sign on the right.]
Zoe Cannon

When I decided to go to the first Association for Autistic Community Conference in 2014, I had been lurking on the outskirts of the online autistic community for years. At first I wasn’t sure whether to go at all. Aside from the practical issues -- travel drains my inner resources like nothing else -- I didn’t know whether I was willing to step into a group of autistic people and claim that I was one of them. They might tell me I was lying; they might turn me away. But I was hungry for a taste of belonging, hungry enough to face packing and plane tickets and a crowd of strangers … and if I didn’t belong, I would rather find out sooner than later.

I worried that I wasn’t autistic enough, or wasn’t autistic in the right ways -- after all, hadn’t I been semi-successfully passing as neurotypical for the better part of my life? I worried that everyone would already know each other, and that there wouldn’t be any room in their already-established friendships for me. A lot of people did know each other already, as it turned out. But it also turned out that it didn’t matter. My first night there, I sat at a table full of strangers, talked about the fun and challenge of working in a creative field, made a joke about dubious autism research, and was welcomed as if I had always been there.

As the days went on, I lost track of time chatting about nothing in particular with people I had never met before. I listened to a presentation about sensory issues and sexuality, and another about how to avoid being manipulated by people who are trying to help you, and no one cared if I kept my body moving so I could think more clearly. I hunted through a convenience store for things that were pleasingly shiny or squishy, with a group of people who understood the value of shiny squishy things. I had a glow-stick swordfight with Ari Ne’eman, then-head of the Autistic Self Advocacy Network and someone whose work I had admired for a long time. Never once did I feel out of place.

It wasn’t a utopian paradise. It’s tempting to frame it that way, but in the end that would be disingenuous. Think about it this way -- neurotypical people regularly spend time in communities made up mostly of other neurotypical people, and that doesn’t mean they never develop conflicts or run into problems. AACC was the same way. It wasn’t perfect; what it was, rather, was a place where the social landscape made sense. Where I could navigate the world without needing to constantly try to translate everything, or suppress my normal reactions, or make sure I was doing it right. And that was something I had never experienced before.

That experience was what I had hoped to find there. But the conference also gave me something else, something that changed my life in a way I didn’t expect: I had never realized, before spending time around other autistic people, how much I saw my autistic traits as the things that made me special. My sensitivity, my awkwardness,  my obsessive interests and the bubbly joy they gave me -- before I knew I was autistic, those were the things that made me different, and so they were the things that defined me. Afterwards, autism was a name for something I had thought couldn’t be named, and it was a promise that I wasn’t alone, and I clung to it like a shield. But at AACC, suddenly being autistic didn’t make me special or different. Autism couldn’t define me if everyone around me was autistic too, and I had to figure out who I was when I could no longer point to a handful of autistic traits as the answer.

At some point during the conference, maybe around the time I realized my previous view of myself was no longer adequate, I also stopped worrying about whether I belonged. Was I autistic enough? Clearly so -- the people around me followed my trains of thought and understood my overwhelm and recognized me as one of their own. (Even my voice told me I was in the right place. I had never realized before that the cadence of my voice marked me as autistic until I found myself in a roomful of people who sounded like me.) Was I the wrong kind of autistic? The more time I spent there, the more I became convinced there was no such thing. I was more verbal than some people, and stimmed more than some people, and was more social than some people and less than others. The noises that bothered somebody else didn’t bother me -- and so what? No one was going to take away my autism card away because being autistic didn’t look exactly the same for me as it did for them.

Once I came home, I found that I cared less than I ever had about how I looked and sounded and moved, and whether I was doing everything right. Now I knew how it felt to be myself around other people, and I wasn’t willing to give that up. I probably looked a lot more autistic than I did before I left, but at the same time, autism mattered less to me than it had in a long time. I knew there were other people like me out there; I knew there was a place where I made sense. After that, knowing what to call it seemed almost beside the point.