Herstory of Autism — Pioneer Jeanne Simmons by Dr. Sabine Oishi

Linwood Children’s Center
Linwood Children’s Center

Over sixty years ago–well before autism was commonly known– and before Applied Behavior Analysis, therapist Jeanne M. Simons created Linwood. A school and residential haven for children who were destined to be institutionalized, it was the first and only program of its kind to provide support for the children and relief for the parents.

Linwood’s unique place in the history of autism is its early connection to Dr. Leo Kanner, who was the first to identify the syndrome now known as autism spectrum disorder. Dr. Kanner coined the term Early Infantile Autism and conducted his early autism research at Linwood. And in 1965, American University professor and researcher, Charles Ferster, defined “The Linwood Method.” Using a federal grant, he studied behavior modification with autistic children and developed the “Linwood Project”, which analyzed Jeanne Simons’ therapy and broke the methods down into objective behavioral language.

Simons’ Linwood Method book, “The Hidden Child: The Linwood Method for Reaching the Autistic Child”, co-written with Dr. Sabine Oishi, chronicles her work through the years and is still used as a guide for training staff at Linwood and other centers working with people with autism.

Many of us who have loved ones with autism have often wondered why they act the way they do, why they react so strongly or disconcertingly to sometimes seemingly everyday situations. This is what Jeanne Simmons sought to demystify. Jeanne wanted to help struggling parents create an optimal environment for their children by understanding them and pioneered the Linwood Model, a groundbreaking approach at the time, to serve children with autism. It has now come to light that Jeanne herself was on the spectrum and that helped her empathize, understand and be patient with the children that she served. The book Behind the Mirror is a moving account of the life of Jeanne Simmons, how her autism helped shape the Linwood Model and the challenges that she faced in setting up the Linwood Children’s Center. ABILITY Magazine’s Priya Iyer caught up with Dr. Sabine Oishi, the person that Jeanne had entrusted her life story. Dr. Oishi was educated first as a teacher and a child psychologist. She then earned her doctorate in child development and family therapy from the University of Maryland and has worked as a teacher, a therapist and a researcher in Switzerland and the United States.

Priya Iyer: Hello Dr. Oishi happy to meet you.

Dr. Sabine Oishi: Happy to have a chance to talk about the book and Jeanne Simons.

Iyer: I did get the book and I did spend a lot of time reading it and made some notations to some things that I would like to touch upon. But first, a little bit of my background. My son was diagnosed with Asperger’s syndrome when he was about five years old, now he’s 14. I left my accounting career because I wanted to figure out how I could help him. Now he is a fine, high-functioning individual. I’ve done a lot of reading on this topic overall. So, it’s very personal to me.

Oishi: Where are you located?

Iyer: I’m in Princeton, New Jersey.

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Oishi: New Jersey, if I’m correct, has a lot of facilities or schools specifically for children with autism. I think it’s one of the states in the whole country that probably has the most schools that are dedicated specifically for children with autism.

Iyer: Yes.

Oishi: In other states, either they don’t have any or there are very few, so it’s very hard for parents at times to find an appropriate placement for their children.

Iyer: This is all I know. We’ve been here since he was in kindergarten. It’s not perfect, but my friends in other parts of the country think NJ is one of the best states.

Oishi: For the book, I was asked to do an appendix with resources for parents, so I researched the whole country in terms of organizations to steer parents towards, and I found it extremely difficult to—In fact, there was not one central organization that would encompass the whole country. You had to go individually to each state. And even when you did that, those lists were not complete. So I recently met parents of a young man who is now in his thirties who lived in Maryland. They were looking for a placement for him because he couldn’t go to a regular school. They looked all over the country. They applied to 30 different institutions, and they all rejected him. Finally, somehow, even though they lived really close by, they finally found Linwood. And when he was 11, he entered Linwood, and he’s been doing very, very well and is now in an independent—well, in a supervised housing situation and he has a job. But it just boggles the mind that somebody who lived within probably 30 miles of Linwood was unable, for a couple of years, to find the appropriate placement.

Iyer: Yeah. It happens.

Oishi: If I were younger and I had more time, I would try to put together a list of all the schools in the whole country, but it would take months to get that.

Iyer: The information is very fragmented at this point, for sure.

In the book, you talk about Jeanne Simons, herself, being on the spectrum. Did you see this in your interaction with her? Or when did you realize that was the case?

Oishi: Of course, I had no idea. I mean, here is an incredibly accomplished woman who founded the first institution for autistic children and who proved to Leo Kanner, who was the father of autism, so to speak, that it was possible to treat these children. He didn’t believe that was possible. People from all over the world came to Linwood. Anyway, I started—I was asked to try to somehow extract the methods that were being used in Linwood so that they could be written down because, at that point, when I met her in 1983, Jeanne Simons was 73 years old and retired. She was in not very good health, and people were afraid that her message would be lost.

So, I started working with her, working at Linwood, going through all the materials. And the one thing that struck me very early on was that there was a lot of material, like case histories, that had been written down at some earlier time–that she had dictated or written or that people had—that she had told people about and they were on tape, and she told them to me. They were absolutely word for word the exact same story.

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If you tell a story from your children or your past life, you’ll get the main facts right, but you’ll use different words. Somehow you’ll elaborate or you’ll leave something out. It was like she was reading from a script. Things were in case histories that might have gone back 30 years. I found that extraordinary. I didn’t really have time to think about it much, but I noted it in my head.

The other thing that made it a little bit difficult was that when I would write something that she thought was not quite correct, I would write a chapter and I would give it to her to read, she would review it and OK it or we’d discuss. But at times I would come back and she had only read the first four pages, and there was something that she didn’t agree with or that she felt was wrong, and she couldn’t get past it. She couldn’t make a note and say in the margin, “I’ll discuss that,” and just read on. She couldn’t get past that, and I found that very annoying. It cost me a lot of time. But every person has quirks.

And then among all the materials I was given, boxes and boxes of old stuff, there were also a few little snippets, like little childhood memories, that she had written down. One of them that appears in the book in one of the chapters was the experience of her and her sister being evacuated from Belgium during World War I. And I read that, and I thought, “That child is autistic.” And I didn’t know what to do with it, because—would I just say, “Jeanne, do you realize this child is autistic, which is you?” So for a while, I just kind of sat on it. And then I just asked her. I said, “You know, I read this, and if I didn’t know better, I would say this child is autistic.” And she said, “Yes.” I said, “How long have you—I mean, nobody knows.” And she said, “Well, I know.” “How long have you known this?” “Well, it was probably around ’65.” At that point she would have been 55 years old.

And then she said, “When I realized it, a whole lot of stuff started to make sense to me.” But if you met her–and by that time there were many people who knew a lot about autism–you’d have no idea. She didn’t hide it, but she didn’t advertise it. To her, it didn’t really make any difference. It didn’t make any different to who she was, to her work. But she did finally acknowledge that being on the spectrum herself was helpful in her work.

Iyer: How do you think her being on the spectrum gave her advantages in developing the Linwood approach and starting the Linwood school?

Oishi: She didn’t know she was on the spectrum when she started Linwood. She started working with—her first autistic child was a patient of Dr. Kanner’s she treated when she was still at Children’s House in Washington, where she had moved to after the war, after she had gotten her master’s. She worked with that child, that chapter is in the book with her story—

Iyer: The child called Lee, right?

Oishi: Yes. She approached him as she approached all children. She took him how he was, and then she tried to slowly shape his behavior a little bit. She did not think about him as autistic or anything. She thought of him as Lee. Then there was a group of children at Children’s House who were so difficult that they were going to be kicked out because nobody could treat them. Nobody could deal with them. They were destined for institutions. So, she asked whether she could take that group of children and work with them. That’s basically—that was her inspiration to start Linwood because she saw not only how difficult these children were to work with, how different, but also how incredibly burdensome they were for the parents. She always said that she started Linwood not for the children, but for the parents because she felt that, having experienced Lee and how he consumed every minute of her time–She realized that for some of these parents, they were simply at the end of their tether. And their only option that they saw was to institutionalize their children, which was a horrible choice. So she said she did this for the parents. But obviously who benefited were not just the parents but the children.

As I said, she never thought of them as something or something else. The interesting thing is that this first group of children later, after a few years, Leo Kanner examined all of them. He found that not all of them were autistic. Some of them were schizophrenic. Some had other severe psychoses. But they all profited from her approach. So, it wasn’t an approach for autism;it was an approach to help a child somehow slowly be able to become socialized and get out of the prison of their condition. And some of these children ended up going to college.

Iyer: Great! In your view and in having talked to her, what did she see as the success of her approach? What was success to Jeanne Simons? How did she feel once she had done this, the Linwood approach, the Linwood school?

Oishi: She had absolutely no ego. I think this is one of the things that we struggled with when we talked with each other. She was happy that Linwood was successful. She was happy when people came to Linwood to learn. She was incredibly generous in terms of going to other institutions, other countries, and teaching people or consulting with them, even at the cost of her own health. But she never had a sense of pride. She just felt that this is what she was meant to do, and this is what she did.

When she got older, especially after she had had another fairly serious illness, she was very focused in selecting some of her younger staff and started training them to take over. Once they had taken over and started running Linwood, she bowed out. She still was on the board. She still consulted with them on cases. When I met her, I think she ran a parent school at their request. She still helped training new staff. But she no longer thought of it as “her” Linwood. It was “their” Linwood. The changes that were inevitable, because of changes in law and all sorts of financing, she accepted as organic growth that had to happen. She never said, “This is not how I used to do it; this is no longer my Linwood,” or whatever. She would say, when she got another honor, she would accept it, but she would say, “I don’t know why people are making such a fuss.”

Iyer: (laughs)

Oishi: “It isn’t anything special. I did what I had to do and what I could do. I did the best I could do, and I’m happy that the children are profiting.” She didn’t feel that she now had to establish other schools or have her name on anything. She was autistic, and in that sense, as I say, she had no ego. And that made her an incredible therapist for autistic children because you can’t establish a relationship in the sense of “Well, I’m a therapist; well, I’m a psychologist.” But I used to be a therapist, and we always posited that change happens within a relationship. It’s mutual. You get something back and somehow you get satisfaction when a child’s doing better or you struggle with resistance. She had none of that, absolutely none. When a child left Linwood, she would remember the child, but it wasn’t like she missed that child.

Jeanne Simmons at Linwood
Jeanne Simmons at Linwood

Iyer: It’s interesting you mention that. I did think you mentioned that in the book as well, right? That she had absolutely no ego? And one of the things that you said in the book that struck me was, “Being autistic myself, I have a need for emotional distance that makes it easier for me to see and respond to the needs of others without becoming too involved or too interested.” I thought that was very poignant, if you will.

Oishi: The last chapter of her memoir, to me, was the most moving one. She wanted to call the book “Who Am I?” And unfortunately, that title was already taken. But when she realized that she was autistic, which as I say was in middle age, she realized she had observed that she was different in some ways from other people, but she simply accepted that every person is different from every other person. It never hindered her in anything. She dealt with it in a way that’s unique. From early on, as a little, little baby, little child, she somehow figured out how to face these challenges.

And people didn’t realize, her family later said that they thought she was a little different, a little strange, but never to a point where there was a question because she was always successful and always managed to survive–more than survive, thrive. But when she then realized that some of these challenges, she had were not normal, not the usual people’s experience, she realized that not only her need for some distance but also what it resulted in was not that she felt lonely–because I don’t think she ever did–but that there was something missing. That’s when she describes her left side and her right side, her right side being somewhat like crippled or undeveloped, underdeveloped. She was trying to understand that, and she was trying to accept it. Ad she was trying to integrate those two parts of herself, which never totally happened. But she did start struggling with that.

But it never affected her work. And she had many very devoted friends. She lived on a pittance. She didn’t pay herself a salary. She couldn’t because Linwood, early on, was paid for by parents. And the parents paid as much as they could, but it was never a lot. The house had to be upgraded. She basically had no money, ever. I think when she got Social Security, that was probably the first time she had any money of her own. But she had many good friends, and some of the parents of some of these children were wealthy. They helped support Linwood and they also helped her with rent and other basic necessities. These were very devoted people because they were so grateful to her. And she liked them. She went out and had lunch with this person or that person.

But there was never a sense of–like we have close friends and then we have acquaintances. There was never that sense of having a close friend that if that person was not there or she hadn’t seen them for a while, she would miss them. She was always very, very happy to see me, but it wasn’t like, if I didn’t for some reason call her or something, that she would call and ask, “What’s the matter? I missed you.”

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Iyer: That’s interesting. I know you mentioned that she would get stuck on something and not move on. Besides that, what other challenges did you face while writing this memoir with her?

Oishi: The biggest challenge was money. She bought Linwood with I don’t know how much of her own money. She had a few hundred dollars, probably with borrowed money. It was in terrible shape. It’s a beautiful mansion, but the last family that had lived there had I think 11 children. It had never been upgraded, didn’t have central heating. The whole infrastructure was missing. As she describes in the book, it’s a miracle that they even allowed her to open. It was dangerous. She spent a lot of time fundraising so that she could slowly bring this house up to code. It wasn’t until the disability law kicked in that the state paid for children to be there. Before that, the parents had to pay. Of course she tried to keep those fees as low as possible because they were a big burden on the parents. So, money was always a problem.

The other problem was that once the disability law did kick in, then all of a sudden, it became more interesting for public schools to have programs for children. The public schools started siphoning off the children with higher abilities. Eventually, and in Linwood today, as I described in that chapter that I added, the children who are going there are, at least 80%, probably 90% of them, are very low functioning. They simply would not be accommodated in a public setting. Of course, that makes it much more labor-intensive. When you have a goodly mix of children who are at the lower end of IQ and functioning and higher end of functioning, it is easier to run these groups than it is now, with the intensity of services needed and the children making much slower progress and with a prognosis that is much less hopeful or positive.

Iyer: Thank you. What about the challenges while writing the book?

Oishi: First of all, I was told that many people had tried to do this, and nobody had been successful. Jeanne had the reputation of being very difficult to work with. I think part of that was because earlier, when people had tried to codify her message, she was still running Linwood. That was a full-time job, and she didn’t have time to spend with people doing this work. By the time I came along, she had been retired, and she, herself, was eager that the methods would be codified. She said, “If I’m the only one who can teach these children, then I’m a freak. This is something that people can learn to do. But when I’m no longer around to train them, there has to be something there.” She was more motivated when I came along.

Iyer: What would be the takeaway for parents who read this? What do you think Jeanne would have liked to convey through this book?

Oishi: First of all, it gives you an insight that not even Temple Grandin has been able to give–Her insights are very narrowly focused. –This covers the whole lifespan, basically from birth on. That alone is like shining a light into a cave. And maybe you’re afraid of this cave, you think there are snakes in there or something. But then you shine the light, and you see what it’s really like, the fact that it’s possible to overcome with help–and in her case without help–but in most cases with help. That would seem to me to give a message of hope to parents.

But also, that they understand that the behavior of the children–and this is not just parents, but also important for educators–that their behavior is logical. It’s not “bad.” It’s something that stems from their experience and their reaction and the only way that they know how to react to it. Some children are overly sensitive to some input, like visual or auditory input or smell or taste. That has to do with their nervous system. Their reaction to that, closing off, repetitive movements that are self-soothing, they all have a reason. They’re not senseless or bad. And once a parent or an educator understands that these kids are not bad and they’re not stupid and that these behaviors have some kind of trigger and serve a kind of function, I think it makes it easier to accept it and then hopefully to get help to deal with it. I think those two things, the hope that there is a way to help these children, and also the knowledge that this has absolutely nothing to do with character, they’re not “bad seeds,” I think would be helpful both to parents and to educators.

Iyer: That’s a good point. I realized it very late, that this behavior is conveying a message. If I had had literature like this that would have helped me understand it when I was a young parent. It would have really helped.

Jeanne Simmons
Jeanne Simmons

Oishi: The environment of these children can be manipulated much more easily than the child. One of the things in the book, the methods described in the book point to the fact that it is helpful, important, that the environment be adapted.

One of the things I think most all people on the spectrum have enormous trouble with is change. If it’s possible to keep an environment, a room, a setup the same, that is helpful. A move is difficult, as Jeanne very vividly described. The changeover from home to school is difficult, especially at first. Then, when it is becoming clear to the child that the environment at the school and the environment at home are always the same, that transition eventually becomes easier. Overstimulation is usually bad, difficult to deal with. They have to close themselves off. There are things that parents and teachers can do to manipulate the environment to make it less difficult for a child.

Iyer: You had mentioned putting a lot of work into trying to find local sources for parents across the country.

Oishi: It’s in the book. It’s the last appendix, the parent resource guide. It’s four pages long. “An Autism Resource Guide,” it’s called, Appendix B. At the very least, it gives parents an entry into the different support sources that are available, both country-wide and in their particular states.

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Iyer: What do you think of the term “neurodiversity”?

Oishi: I know it’s being used more and more. There’s also “neuronormal” or neuro-whatever. And “neurotypical.” The expression “autistic” has fallen in disfavor. When I started working with Jeanne, those children were autistic, and people had autism. First of all, the diagnostic criteria have changed over time. When you look at the DSM, the Diagnostic and Statistical Manual [of Mental Disorders], that describes all mental conditions or illnesses, we’re now on DSM-5, which I think is awful, the understanding of—the description of autism has changed because it has been extended to include what previously were called “developmental disorders.” So finally, now, we have the expression ASD, autism spectrum disorder, people are “on the spectrum.”

Kids who used to be called “Asperger” are now “high-functioning on the spectrum.” The expression Asperger is hardly used any more, even though there are groups of people who call themselves “Aspies.” That’s their prerogative. But psychiatrically speaking, when you’re diagnosed, you don’t use that term anymore. Because now there is such a wide spectrum (laughs). You can talk about neurodiversity, there is more diversity within that spectrum, and neurotypical people. It’s a way of not—I guess people want to avoid stigmatizing, so they find new ways of expressing and naming something. But when you get right down to it, at the end of the day, it is what it is.

There are people who have what we used to call “normal” development, which I describe at the beginning of the book, and then there are children who don’t. And if they are on the spectrum, they don’t in very specific ways. If to diagnose, you observe. If you tick five of so many or eight of so many characteristics, you make the diagnosis. If they suffer from something else and you tick something else, the diagnosis is different. It’s always a challenge as a psychologist or a psychiatrist to diagnose a child who has behavior that doesn’t fit the norm. What we call “the norm,” because there are no “normal” people anyway. You’re normal, I’m normal, we’re very different.

Oishi: The reason I wanted this book written, I wanted the story out, I had no investment in this personally, but I wanted that story out. I spent months listening to Jeanne, writing it down, and all of that. And nobody wanted the story. That was back in the 1990s. At that time, autism wasn’t yet—well, I’m sure it was as prevalent as it is now, but it wasn’t recognized. Now there’s one in 59 children born on the spectrum. One in 59! That’s like an epidemic. And now people finally have woken up to the fact that this is something that’s worth paying attention to. At the time they said, “Memoirs don’t sell.”

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But having persuaded Jeanne to tell me this story, and having persuaded that it was an important story, and she agreed it was important, I absolutely felt that it had to be published. And so, I’m very grateful to Hopkins that,even though they told me that they don’t publish memoirs ever, that we were able to package it in such a way that they could see their way to publishing it. I had to cut it back by at least half. Some of Jeanne’s adventures that I found fascinating I had to cut out because they wanted me to focus very much just on her methods and her treatment and all of that. She had many more adventures that would have been very interesting and to me they’re funny and interesting and fascinating.

But I was able to get it out and in such a way that I think it enhances people’s understanding of the whole disorder and all the various aspects of it. And then Dr. Harris’s appendix, which brings it up to the state of the state of what we know at this point in terms of ideology and treatment and diagnosis I think also makes it valuable for professionals who want to know more than perhaps a parent or a teacher. It covers many bases.

Oishi: But the heart of it is Jeanne’s story. That’s why it needed to be published.

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