Anita Barrows on Love, Poetry and Autism

Anita Barrows: Indeed.

AB: Long before. I was a poet from the time I was about six years old. In fact, through my childhood and up through my years in college, there was nothing else I ever thought about doing. Writing poetry was really it. And I was always interested in politics. I was lucky enough to be a teenager in the 1960s and my political identity was also really strong for me at that point, as I was very involved in the Civil Rights Movement and the anti-Vietnam War movement.

But writing was really the only thing I thought I would ever do. After I got out of college and I realized that I had to do something to make a living, I began working with the Poets in the Schools program. I was also working with a radical law students group, placing law students in internships with radical lawyers like the lawyers for Cesar Chavez and the Black Panthers.

AB: I wasn’t, but I considered it at that time because it had become clear that I couldn't earn a living writing poetry. I had studied French, Italian, Latin and German in college and did a Masters at Boston University in English literature and creative writing, and was working as a translator when I enrolled in a doctoral program in comparative literature.

AB: I just love language.

AB: I think I have to thank my very, very troubled childhood for this career.

AB: Not at all. I had a mother who was chronically depressed and a father who was violent, and I did everything I could to escape that household, mostly adopting myself out to the families of friends. I was pretty good at establishing relationships outside of my home, and wrote poetry from an early age, which helped me process some of the pain I was going through, but when I had my own first child, it came back to haunt me. I essentially had a breakdown. It ended up being diagnosed as autoimmune thyroid disease, but when I look at it now, I think the thyroid disease was a physical manifestation of what was going on inside me emotionally.

I had read a lot of Jung and was interested in Jung's approach to literature and symbolism and the collective unconscious, and I was lucky enough to be referred to an extraordinary Jungian therapist, Rosamund Gardner, who died about ten years ago. I was in Jungian analysis with her for more than ten years.

AB: It was, yeah.

AB: Frankly, I don't know who I would be today if it weren't for the work I did with Rosamund. I can't even begin to imagine. I was sort of casting about for some kind of work that felt meaningful, and it didn't feel like teaching poetry at the university level would be enough, and it really came home to me that therapy can be a deep transformation that can liberate people. I remember Rosamund saying to me at one point, "When you have done this work, you will free your energy." I was not a very energetic person in my 20s. Now, in my 60s, I'm full of energy.

AB: I think I'm making up for lost time.

During the course of that therapy, I began having dreams—and in Jungian analysis, you do a lot of dream work—and my dreams suggested that I might want to do therapy myself. We had to ferret out what was identification and transference and what was a genuine desire to do this work.

AB: Very much so. I feel like that kind of transparency can be so helpful—especially in a field where there’s so much fear about revealing that you’ve suffered personally. I’m less likely to reveal it to some colleagues of mine, who seem so tight-lipped and collected.

AB: It’s hard to know, but I can’t imagine that the majority of people who come into this field had a Mary Poppins kind of childhood.

AB: I learned it from Rosamund. She was very open about the pain that she had experienced. It would come up in dreams sometimes where I had sensed something about her childhood, and she was very honest about saying, "Yes, in fact this happened,” or, “No, it wasn't quite like that, but this was the way it was." Those were moments when I felt like you really can emerge from traumatic experiences, deep losses, and come out as a person who can have a rich and full life and be able to receive other people’s pain. I say that to my students all the time.

I can't think of anybody in my education at the Wright Institute, anybody who trained me, who was that open about their experience. In fact, I went through several years while I was a student and then shortly after of not wanting to talk to anybody about my childhood. I was really afraid that if anybody found out some of the things that had happened to me as a child, they would think, “She can't possibly be a therapist. Somebody with that kind of childhood turns into a Borderline”—or some other Axis II diagnosis.

So I just didn't talk about it. I didn't even tell people I was a poet. At that point I had two books of poems published and had won a $20,000 grant from the National Endowment for the Arts for my poetry. And I didn't tell anybody.

AB: I was afraid that if I was known as a poet, I would have less legitimacy in their eyes as a therapist. It’s kind of amazing when I think about it now. I remember once I was at a party where there were a lot of Wright Institute people, and somebody who wasn't from the Wright came up to me and said, "Oh, hi, I'm so-and-so. Who are you and what do you do?" I opened my mouth and started to cry because I felt like my real identity was something I had to hide and that if I had something else that I belonged to, it would take away from people's beliefs that I could really do therapy.

When I went to take my oral licensing exam, I think it was 1990, I had a recurrent dream for weeks before I took the exam. I've always worn a lot of rings on my fingers, and in my dream, I had lost all my rings. It became really clear that I was afraid that assuming the mantle of psychologist meant that I would lose what was different and kind of quirky and colorful about me, and I'd have to become this straight person.

In fact, these much straighter friends of mine had loaned me clothes to wear at the oral exam. I was going to put my hair in some kind of bun, and I was going to wear this tailored suit and a white shirt. In the end, I gave them all back and said, "I'm just going as myself." And I passed.

AB: That's a really good question. At the beginning of my work as a psychotherapist, I kept my identities pushed very far apart, but as I went along, I started to devote more time to my writing. I created a little study downstairs in my house that I just used for writing, and then began to give more public readings, which I hadn't done for a period of time. There would be fliers around Berkeley saying I was going to read, and sometimes my patients would show up at my readings.

I remember talking about that with some people who were much straighter psychologists than I was, and they were saying things like, "Well, you really shouldn't publish if you're a therapist. And you certainly shouldn't give readings." My poetry is not confessional poetry. It's not like I talk about my father's abuse or my mother's depression all that much. But it certainly reveals my politics and my sense of engagement in the world and also facts of my life: I am a single person. I have two daughters. I have a granddaughter. They come into my work in one way or another.

So, short of writing under a pseudonym, which I didn't want to do, there seemed to be nothing I could do to keep them pushed apart if I wasn't going to stop writing altogether, which I absolutely realized I couldn't do. If I go for several months without writing, I just don't feel like myself. I can't do it. If I have a core identity, if there's any one thing that's my core identity, it's a poet. And being a psychotherapist is the work I do, and it's work I love, but it's not my core identity.

When the first translation of Rilke came out in 1995, the Book of Hours, Joanna Macy, my co-translator, and I did a bunch of public readings for that. It says right there on the flap of the book that I am a poet, a translator, and I work as a clinical psychologist and a professor at the Wright Institute. There it was all laid out. And now when I think about it, it feels so clear to me that my life as a poet informs the work I do as a therapist.

AB: I think I write poetry to document my sense of engagement with the world in whatever form that takes. It may be a poem about the trees outside my window in the morning or my dog sleeping, or it may be a poem about the children in Palestine or Rwanda. Poetry is the best way I know to make sense of the world. The fact that I write and that I see as a poet is the way I make meaning of things.

In fact, I have a patient in his early 30s who is, among other things, a musician. He's very attuned to anything artistic, although that's not what he earns his living at, and he teases me sometimes when I say something, "That's certainly something a poet would say." He was referred by someone and googled me and there was all sorts of stuff about me online. These days it’s all out there. If you don't want to go see a poet, don't come and see me.

AB: Exactly.

AB: I think it has. I gave a reading some years ago as part of a group of Jewish women who were politically engaged. Grace Paley read, and it was the last time I saw her before she died. Someone came up to me afterward and said, "So, you're really a clinical psychologist? Are you practicing?" I ended up working with her for several years.

AB: It’s so true!

AB: Wow. What a wonderful question. I'm really glad to have an opportunity to talk about it. I think it's the basis of all of it. I really do. I think you can't do this work without love. And I don't just mean compassion, I mean really loving somebody.

Of course we all have some patients who are more challenging than others. I have one patient who argues with everything I say, and it can be incredibly frustrating, but if I didn't underneath it all love that patient, I wouldn't be able to continue doing the work. And I think you're absolutely right, people in the field are terrified of it.

One of the arguments made by certain psychologists in the APA who justified “enhanced interrogation techniques”—AKA torture—at places like Guantanamo, was that they don’t consider psychology to be a healing profession. For them it’s a profession where one investigates the workings of the human mind and analyzes them. Therefore, one can investigate the workings of the human mind in situations of interrogation. I have a lot of trouble with that on many different levels.

AB: Yes, I think there's a fear of being soft and compassionate and nurturing and sort of what's traditionally thought of as feminine or maternal. There’s a desire to be taken seriously in this profession, to be seen as a serious science. The insurance companies are also setting the stage for this, with their insistence on quantifiable evidence and “empirically validated” treatments. I’m not anti-science—I love science, but we shouldn’t value it at the expense of love.

I talk to my students about love all the time. They will come to me sometimes very sheepishly and admit that they really love a particular patient of theirs. I'm not talking about them coming to me and saying, "I really want to go to bed with this person," or, "I'm going to ask him out for coffee as soon as the therapy is over." We are so reductionist in this culture. It’s a reflection of the incredible lack of imagination that we have reduced the word love to wanting to fuck.

AB: That love wouldn't be a component of transformation is just unimaginable to me. I think it has to be. In my own therapy with Rosamund, there was a moment that still brings tears to my eyes when I think about it. I was very, very ravaged in the first year that I was seeing her. I had an infant. I had a bad marriage, and I felt really overwhelmed. All of my own mother's incapacity to care for me flooded back to me and made me terribly afraid that I couldn't care for my child, my daughter.

There was one day where I didn't know if I should be hospitalized or locked up or what, but I just felt unable to go on. I hadn't slept in days, weeks, not just because my baby was waking up at night, but because I was really a wreck. So I called Rosamund on a Friday, and she said, "Come and see me tomorrow morning." She didn't see people on Saturday mornings, but I think she could hear how ravaged I was feeling. So I went to see her the next morning, and I was still just exhausted because I hadn't slept.

And she said, "Why don't you just lie down on my couch? I have some paperwork to do. We don't need to talk. There's really nothing to talk about right now. Just lie down on my couch and see if you can rest a little." So I lay down, and she covered me with a blanket, and she stayed in the room and did some paperwork or whatever—I don't know what she did, but I fell asleep. I napped for maybe two, two-and-a-half hours. When I woke up, she was still there in the room, and I was able to go home and feel better. That was a real turning point.

AB: It was just that. I felt sheltered and contained and held, and I hadn't had that in my childhood from my mother—ever probably. Rosamund knew that. We didn't need to speak about it. There didn't need to be interpretation. At that moment I just needed some holding, and I knew it came from love. I was then able to go home and take care of my baby.

AB: I had actually called her the previous day and said, "I think I need to be hospitalized. I am so profoundly depressed—beyond depressed, agitated. I don't know what's wrong with me." Her response was wonderful. She immediately asked, "Who's going to pick up your daughter from daycare?" And I said, "Well, I am. I actually need to leave to pick her up in a few minutes.” And she said, "You're far too sane to be hospitalized." And that was that.

Love means suffering. I say to my students all the time, “You’re going to suffer from this work—if it goes badly, if someone commits suicide or gets ill and dies.” One of my patients died a few years ago. I hadn't seen her for a few years, and I knew that she was somebody who had a heart condition, but she wasn't much older than I am. And when I found out just by chance that she had died, I suffered, and there was really no place for my grief. I couldn't call her family. I had never met any of them.

AB: I didn't even know if they knew that I was her therapist and I couldn't legally get in touch with them. So I just had to hold it myself. Things like that happen and we're not automatons, we’re not computers. We're human beings.

I had one kid whom I saw for 12 years. She came to me when she was five and I was working at Children's Hospital in Oakland, CA. She was a very intelligent, exceptional child with Asperger's syndrome. A year after I started working with her, her mother was diagnosed with a very serious cancer, and she hung in there for another four years, but then she died. So I saw this child from the time she was five through the time she graduated from high school and was getting ready to go away to college, and we were very, very close.

In one of our termination sessions she said, "I still can't stand it that the person that I feel closest to in the world is my therapist. It just doesn't feel right. It should be a friend. I should have a friend or a boyfriend or a girlfriend or somebody who's the person I'm closest to. It shouldn't be you." And then she said, "It's such a weird thing anyway, this whole therapy thing. I sort of wish you had been somebody else in my life."

So we talked about how, if I had been her next-door neighbor or her auntie or a friend of the family, we probably wouldn't have been able to see each other regularly. For awhile I was seeing her three times a week, then twice a week for years, and then it became once a week as we were winding down. It never would have been that regular, and it wouldn't have been just the two of us in the room. Maybe I could've taken her out to the movies, but it would've been a totally different kind of relationship.

AB: Exactly. So she said, "Okay. I get it. In this room, it didn't really matter that I was your patient and you were my therapist. And it didn't really matter that, when I met you, I was five and you were 38. And it didn't really matter that I was diagnosed with Asperger's syndrome and you weren't. In this room, we were just two souls speaking to each other." And I thought, “wow.”

AB: That, to me, is the work. Personally, I would so much rather see therapy considered a spiritual discipline than a scientific discipline, because I think that's really where it is. That's really where the work happens.

AB: And it’s simply not quantifiable. How do you quantify a child who begins at five with Asperger's Syndrome, never talking to any other children in the school? Then her mother gets sick when she's six and dies when she's ten. How do you quantify whether that child got better or not? She says “hello” three times out of five? She makes eye contact seven times out of nine? When I was on insurance panels, those were the kinds of ways I had to report progress.

Yet when she was able to sit there and say what she said, I knew that this child had what she needed to go on with her life.

AB: Well, I started out doing languages and literature, and when I started preparing for graduate work in psychology, I worked with Dan Slobin and Susan Ervin-Tripp, both well-known in the world of child language development. I got very interested in how language develops and how skewed language can develop in some people, including people with autism. Then when I got to the Wright Institute, I joined a study at the Child Development Center at Children's Hospital in Oakland where, over a period of 18 months, kids with autism were being studied. Half were on a particular medication that was supposed to enhance their social awareness, and half of them weren’t, but it was a double-blind study, so we didn't know which kids we were working with. I was just fascinated with those kids.

This was 1980, and all of a sudden there was a burgeoning of autistic children, and the director of the Child Development Center asked me if I would be interested in setting up an autism clinic as part of my practicum. I of course said yes, and over that year worked with people on developing diagnostic criteria, and then the following year I did therapy with some kids, including the child I just mentioned. The Interpersonal World of the Infant by Daniel Stern had just come out and I ended up writing my dissertation about Asperger’s Syndrome.

If I dig a bit deeper, though, I think the reason I got involved in autism was my inability all throughout my childhood to reach my mother. She wasn't autistic, and I wasn't either, but there was a huge barrier, a huge wall between us.

AB: Yes. It took me a while to really understand that that was why I was so compelled by it. The more superficial level was my interest in language development, but looking back, there were eight students involved in that research study, and I'm the only one who wound up seeing autistic kids all through my career. I was drawn to figuring out who is reachable and who is unreachable and how do we find each other as human beings?

AB: What's happened in my practice as time has gone on is that I see children and also adults on the spectrum, mostly on the higher-functioning end, because that's what the kind of therapy I do can treat. And the adults I see who have autism must have the capacity to take in the kind of weekly, deeply interpersonal therapy that I do. But I also see children and adults who are not on the spectrum and who are coming to explore developmental existential issues in their lives.

AB: The standard scientific definition is that it's an impairment involving the child's cognition, language, and often the child's intelligence. At the very high-functioning end, I've had autistic kids with IQs in the 140s, so intelligence doesn't always have to be impaired. I haven't seen a recent statistic, but it used to be that 3/4 of kids diagnosed with autism were also diagnosed with at least mild mental retardation. But some of them, who used to be diagnosed with Asperger’s until the DSM-V got rid of that diagnosis in favor of “Autism Spectrum Disorder,” can be extremely intelligent.

It is essentially a pervasive developmental disability that affects the child's capacity to function in society. Autism means “in the self,” and so the child has a hard time making attachments. Daniel Stern studied attunement and how in a normal caretaker-infant pair, the caretaker—mother, father, grandmother, whoever it happens to be—attunes to that child incredibly frequently, many, many times a minute in various ways. The baby shifts a little, so the caretaker shifts a little. The baby gets excited about something, and the mother's voice will mimic that excitement. Generally those kinds of attunements are done cross-modally—so it’s not like the baby flaps her hands, and the mother flaps her hands. Instead he baby will flap her hands, and the mother will say, "Oh, you love these scrambled eggs!" That kind of thing.

But with autistic children, it's much harder for them to take in information cross-modally, so they don't feel the parent's attunement. They don't get attuned to. And it's not because they don't want to.

AB: Absolutely not. It's more like, “this system does not translate what you're doing into anything I can understand.” When I first started working with autistic kids, a lot of the parents had been called "refrigerator mothers." It was their coldness or their “death wish” toward the child that was supposed to have caused the child's autism. That was the standard psychoanalytic understanding of autism. And I think there are some practicing psychoanalysts who still see it that way.

AB: Exactly. But it’s very clear that both those disorders are biologically-based and that a parent can have a perfectly normal child and then give birth to a child who develops autism or schizophrenia. Does she really love one child and have a death wish toward the other one? I don't think so.

AB: When I was first studying autism, the incidence of autism was 1 in 2500. Now it's about 1 in 66, and in the Bay Area especially there’s a huge prevalence. It's really burgeoned over the course of my practicing in the field. I've watched it carefully and there's no way that a purely genetic disorder can increase that hugely over such a short period of time. For instance, as long as we've been measuring schizophrenia, it seems that about 1% of the population is schizophrenic, and this is across culture, across socioeconomic status, across everything that we know.

It certainly seems as though there are more learning disabilities diagnosed now, too, and more ADHD. Whether that's a fiction of the pharmaceutical companies remains to be studied. I think that's certainly something worth looking into.

There’s a pediatric neurologist at Harvard named Martha Herbert who is researching the ways in which all of the neurotoxins in our environment potentiate each other. So it's not just that there are thousands of neurotoxins, it’s that if you put this one together with these six, you are going to get something that's way more powerful than any one of them alone.

So it may be that the huge preponderance of neurotoxins is intersecting with some genetic predispositions so that this child will develop autism from these neurotoxins and this other child might develop epilepsy or Tourette's or anxiety or learning disabilities or maybe nothing. We don't know for sure, but if I had to stake my career on it, I would say that there's no question that the environment is involved in this.

AB: Well, the first claim I can throw out immediately. You see a kid who's flapping his arms and not making any kind of eye contact, and who's talking in this professorial way and doesn’t care whether anyone is listening or not—don't tell me that nobody noticed this kid 20 years ago. Maybe they were just called weird kids, but come on, if they were there, they would have been noticed.

The second claim is more compelling. It could be that there are more Asperger types in Silicon Valley. I've certainly seen some in my practice who have gone in that direction and are making hundreds of thousands of dollars straight out of an engineering program in a university. They're drawn to that kind of work. So if indeed there is a genetic component, then a high concentration of these folks all in once place would certainly make having kids on the autism spectrum more likely. But beyond genetics, how are they going to raise their kids? If they can't relate well with other people, then they're not going to be super related with their kids. Unless they have partners who are able to compensate for that, the kids are going to be raised with that kind of relational style.

If we think of what we do as a “hard science,” then we're driven to push these folks into categories. But I think there's such an intersection of environment—and by that I don't mean just the physical environment, but the psychological environment that a child is raised in—and the child's biology. And the family environment is different for each child.

AB: I once saw a family that had eight kids, and I saw several children within the family individually, as well as the family as a whole. The three older ones had been sexually abused by the father, who was in prison, and they had in turn abused the five kids younger than them.

One of those kids developed schizophrenia. I don't know how much the schizophrenia was triggered by what had happened to him. One of them was so emotionally fragile and had such a severe anxiety disorder that she went to live in a group home. Three of those kids wound up going to college and making really interesting lives for themselves. And one of them had chosen at about 12 to go and live with her best friend's family, who were highly-functional, wonderful and generous. So she was raised from age 12 on by a good family. She had the resources to go and seek that out and her sibling, a year younger, ended up in a group home. Why? We really don't know. They both came from the same family environment.

Some things can look neurological and certainly be neurological which then, when the environment shifts, can be lifted. My own granddaughter had tics through her late-middle childhood, and when things shifted in her family, the tics disappeared. So were they neurologically based? They were tics rather than something else, but could they be altered by a better environment and more happiness? It seems to have been the case.

AB: Right.

AB: Well, in the old days, they used to put an autistic kid on an electrified floor and apply electric shocks until the child performed certain behaviors.

AB: I’m not kidding.

AB: This was in 1950s, and I think it went on for a while. There was a guy named Ivar Lovaas at UCLA who developed it.

AB: These days standard autism treatment is cognitive behavioral therapy and social skills groups, where you learn particular formulas for social skills.

AB: "No, thank you" or "Please" or "Hello, my name is Henry. What is your name? What school do you go to?"

AB: Right. What I do with autistic kids instead is I try to enter their world. I try to help them express themselves. I work with my dog in the room, and he is a really good co-therapist, especially with kids whose verbal ability is not so great. They get a lot of physical comfort from holding him.

My work with autistic children is not all that different from the way I work with non-autistic kids, except that it's harder to reach them and they're not as reciprocal.

AB: The most important thing for a child on the spectrum is for them to be able to experience that somebody else is sharing their world. The loneliness that they feel, the terrible isolation, and the desperation they feel ends up creating their symptoms. So a parent will bring a child in and say, "He's shrieking, and he's up all night long and jumping around the house and repeating learned lines from TV commercials instead of talking about his day at school."

All of it is the attempt of a child with a big fault in neurotransmitters to reach other human beings, because I think that's what we all want to do. We all want to be connected. So what I try to do is to enter a child's world in whatever way I can. Whatever level of functioning they’re at, that's my biggest guiding principle.

AB: I had a woman who brought her 2 1/2-year-old to see me, and she lived somewhere far away like Fresno, so she basically got up at five in the morning and got her kid to my office and then took her home, and that was her day. Because of that, we had agreed that we would only do six sessions. The mother herself was a physician, highly articulate, highly intelligent, highly trained, and she didn't know what to do with her kid, who was totally nonverbal. She seemed nonresponsive and unable to take in anything that this mother was giving her, and the mother didn't know whether to institutionalize her or what. She was in a very desperate place when she came to see me.

At the first session I had with this child, I have a basket of marbles, and she took a handful of marbles and threw them across the room. So I did the same thing. When I work with kids that young, I am constantly trying to interpret to the parent what it is that I'm doing with their child so that the parent can do it, because they're the one that's with them all day. And I'm trying to interpret to them also what I see happening with their child, because sometimes they don't see it.

The kid threw another handful of marbles, so I did too, and after not very long, she began looking at me. And her mother was saying, "She’s making eye contact with you. She never makes eye contact.” And then I thought, let me try to enlarge this a little bit. So I made a little noise while I was throwing the marbles—and she did too. That was session one.

The next four sessions, we continued to do things like that, where she saw that I could enter her world. And I kept saying to her mother, "Look. She does this when I do that. Maybe you could do some of this at home." We played with different materials. We played with water. We played with sand. I took her into the garden at my therapy office, and she liked playing with the dirt. It wasn't sophisticated play—we weren’t feeding the baby doll or anything like that. It was sort of infant-level play and infant-level communication, and I just gathered a sense of where she was and what she was feeling and went as close into that as I could.

In our last session, I made a number of recommendations to the mother. I don’t know how much receptive language this child actually had—she certainly had no expressive language—but somewhere in her body she absolutely understood that it was the last session.

So we went out in the garden, and she was sort of recapitulating a lot of the things that we had done together. In the garden outside of my therapy office, there's a little fountain that doesn’t have any water in it anymore, but has pebbles in it. She took those pebbles and threw them down the path and I went and chased them. She was all excited to make me go do something. And then I did the same for her, and she went and did it. We were doing reciprocal play, where the child had never done anything reciprocal. And the mother was saying that, at home, she was also doing more reciprocal play.

At one point, she did it in a particular sort of winsome way. As she was running, she threw the pebbles and then she made a gesture to let me know that she wanted to go chase them. I thought, “That's so cool,” and intuitively I just put my hand on her back as she was running, to pat her and say, "Good girl. That's great." And for the rest of the session, on and off, this child kept touching the place on her back that I had touched.

As she left and I said goodbye to her and goodbye to her mother, she touched that place on her back, and it was like, "I'm taking you with me. This is how I'm taking you with me. I know this is the last time." It was so poignant and amazing. The whole thing was as nonverbal as it could get, but it was right there at the level of feeling. It was like letting her know that, regardless of her skewed neurology, it was possible for another person to enter her world, to share her experience, for somebody to touch her back in tenderness and love. It was like we were saying, “I may not see you again, but I know this happened between us.”

AB: It was amazing. The sad thing is I never found out what happened after that.

AB: I do a lot of work with the parents. It’s hard to be the parent of an autistic child because you don't get a lot of the usual rewards. One of the things that makes it possible to be a parent is it's very rewarding. Sometimes it's horrible, of course, but it usually becomes rewarding at some point in the not-too-distant future. But with an autistic child, you don't get a lot of feedback that what you're doing is working, so a lot of parents lose confidence and they also grieve. What's going to happen to their kid when they're an adult? It's cute to be an eight-year-old autistic kid; it's not so cute to be a 27-year-old autistic person. How are they going to make a living? How are they going to survive? What's going to happen to them when the parents die? I do a lot of work with the parents around their grief over their autistic children and also around accepting that this is the child they have and that he may not be “normal,” he may not do the things that other kids will do, but it's possible for this child to have fulfillment.

AB: Yes, absolutely.

AB: Right, exactly.

AB: It's a profound, profound feeling of helplessness. I’m actually working on a novel about an autistic child, narrated by her older sister, who isn’t autistic. At the beginning of the novel, the autistic child is quite profoundly autistic, nonverbal. She becomes verbal later, a little bit like the kid I was describing before, but the sister really wishes that her little sister would die. She wishes that she would get lost. The little sister constantly escapes, and the older sister wishes that she would escape one day and never come back. It's totally understandable, and parents sometimes feel that as well.

It’s so important to legitimize those feelings for parents. When you can't reach a child and the child is driving you crazy because he is up all night and screaming half the day— it's so understandable why parents would feel so frustrated and unhappy with their kids.

AB: In some ways that’s true. I see one boy in my practice now who is in his senior year in high school. And when he was a young child, he didn't have language. It used to be that not having language before five was a pretty bad prognosis. But this kid is amazing. He's getting straight As in high school. He's a genius. I've never beaten him in a game of Chess or Scrabble. And as a linguist I’m really good at Scrabble!

I think he's going to have a pretty good life, so the prognosis was wrong. But on the other hand, relationships with other people, fulfillment in any kind of way that is not sort of limited to technology? Probably not. He’ll be better off in that regard than many people with autism, but not like somebody who doesn't have autism.

AB: Yes, exactly, and also working with the parents of these kids to help them accept that they are going to have a different way of being happy than their kid who doesn't have autism, and that it's really not about following a formula, but about finding what turns them on. If what turns their kid on is sitting in his room and trying to develop a videogame, fabulous. If he finds joy in that, why not? Why send him out to be on the football team and hold that as the criterion for social success, or having 60 friends? All of us have different ways of being happy. Despite feminism and everything else, there's still one formula for happiness in this culture that looms above all others.

AB: Exactly. And if you don't follow that formula, by those standards, you're a failure. So for the people I work with who have autism, the most painful thing for them is that they don't have that. They haven’t been able to accomplish the American success formula. It’s important to help them see that despite that, they can have fulfillment in their lives.

AB: Yes!

AB: It’s so true. This is a culture that is so based on the Protestant work ethic and the Calvinist idea of individual responsibility that, if somebody hasn't “made it,” they believe they are personally responsible.

AB: They take it so personally and feel so ashamed. It’s important to say, “Hold on a minute. Take a look at what happened over the last decade, where our tax dollars have gone, who is being bailed out and who is having their food stamps taken away"

AB: I once worked for a couple of years with a person who was going to inherit a huge amount of money and already was living on a trust fund. This person had the kind of money that people dream will make them happy. And I really got an eye into the unhappiness that can exist despite huge amounts of money.

AB: It sure isn’t.

AB: It was my pleasure. Thank you.

AB: Questro muro

Quando mi vide star pur fermo e duro / turbato un poco disse: “Or vedi figlio:/ tra Beatrice e te e questo muro.”

(When he [Virgil] saw me standing there unmoving, he was a bit disturbed and said, “No look, son, between Beatrice and you there is this wall.”)

—Dante, Purgatorio XXVII

You will come at a turning of the trail
to a wall of flame

After the hard climb & the exhausted dreaming

you will come to a place where he
with whom you have walked this far
will stop, will stand

beside you on the treacherous steep path
& stare as you shiver at the moving wall, the flame

that blocks your vision of what
comes after. And that one
who you thought would accompany you always,

who held your face
tenderly a little while in his hands—
who pressed the palms of his hands into drenched grass
& washed from your cheeks the soot, the tear-tracks—

he is telling you now
that all that stands between you
& everything you have known since the beginning

is this: this wall. Between yourself
& the beloved, between yourself & your joy,
the riverbank swaying with wildflowers, the shaft

of sunlight on the rock, the song.
Will you pass through it now, will you let it consume

whatever solidness this is
you call your life, & send
you out, a tremor of heat,

a radiance, a changed
flickering thing?

—Anita Barrows