Real Life with Eustacia Cutler
Of all the incredible people I’ve had the pleasure of meeting through my writing endeavors, one of my favorites has to be Eustacia Cutler. You may not recognize her name right away, but the work she and her daughter, Temple Grandin, have done for the Autism Community can be felt worldwide.
A couple of months ago, Eustacia and I chatted about everything from raising Temple during an era when no one knew about (nor understood) Autism, to her speaking events, to her new phenomenal book, A Thorn in My Pocket. When I asked Eustacia about her background, she immediately spoke about her father. She shared with me a story about how he and three other gentlemen toiled and worked to invent a gadget they called a “flux valve”. A flux valve registered the minute fluctuations in the earth’s force. Eustacia said her father “wasn’t the greatest businessman” and the head of Sperry, a personal friend of her father’s, asked him, “Why are you working with electric magnetic coils not with needles? Everyone knows compasses work better with needles!”
Eustacia, never afraid to ask the important questions, also asked her father how and why he did all of that work for fifteen years of his life. His response to her was: “because I knew I was right.” Her father rented his invention to the Bendix Corporation for one year for the tiny sum of $300. They turned that money into a profitable study on ‘how to get around the patents’ (pg 107 in Eustacia’s book). As hard as the gentlemen worked on this wonderful invention, their wonderful gadget was taken from them and later called “the automatic pilot.” The concept of the flux valve was then copied by Bendix and it was put into every American plane during WWII. Sperry picked it up after the war and her father was compensated, but, nowhere near what he should have been.
“But I think what made my father very proud, was that his compass worked,” said Eustacia. “That was quite an accomplishment and it’s why, in the end, we all have to follow our intuition, our “gut instinct” as we call it, when we’re dealing with Autism.”
Eustacia’s philosophy is that caregivers need to be positive. They to find ways to stay in touch with who they really are, too (aka: “Me Time”) and, most importantly, treat Autism with a family focus.
I hope you all enjoy a part of my chat with Eustacia. Listen to her words—understand them, absorb them and make them your own. She helped me see things from a more omniscient perspective. And I hope that she touches your soul the way she has mine.
PARENTING SPECIAL NEEDS CONTRIBUTING WRITER, CHYNNA TANARA LAIRD: Welcome, Eustacia. I don’t have the words to express how excited, thrilled and grateful we are to have you here with us. Let’s jump right in about your amazing book, “A Thorn In My Pocket.” You had me right from your introduction. What got me right away was reading, ‘think of me as your future’. I knew right from then that this was a book I needed to read.
EUSTACIA CUTLER: I use that expression often at the beginning of lectures because it seems to mean so much to mothers. First of all it was Temple who said to me, “Mother, you’ve got to get up and talk!” And so, I did.
PSN/CL: And how was that for you? Was it difficult at first?
EC: Well…yes and no. It was a little unnerving at first but all mothers have a bond. And it doesn’t take very long to recognize, ‘I’m with moms’. We understand. And there are now beginning to be more fathers.
PSN/CL: I think it’s wonderful that fathers are becoming more involved in this sort of thing.
EC: It’s very important. And that’s a whole other story. I see that they’re coming apart with the sense of shame and they don’t know what to do with it.
PSN/CL: Well, I know that with our own daughter [Jaimie]. Because her sensory is more on the severe side, I guess that there’s something about her Dad [Steve] that triggers her sensory sensitivities. So, she pretty much rejected him at a very young age and it’s been really tough finding a way to get them to bond. So, I’m very happy to hear that more Dads are getting involved no matter how difficult it may seem or feel.
EC: I think about this all of the time. Steve doesn’t have to think about it in terms of himself. This brings me to another point that I think is terribly important. We’re social creatures. We are incomplete without each other. Like right now—and I’ve said this in many talks—I am who I think I am but I’m also who you think I am. And you are who you think you are and you’re also who I think you are. There’s a negotiation going on. It’s fluid. And who we are depends upon that. Now, when that breaks down—and it does under Autism when our children don’t really understand that we have a mind that’s different from theirs. As you know this is one of their big problems. Women are easier with that than men are. I think that we just accept life the way it is. But men have this sense of honor and suddenly it’s gone—they don’t know who they are.
There was no magic, there was just doing the best I could… and never letting go of hope.” And remember always to just be yourself.
PSN/CL: That is beautiful. And it’s exactly what I’ve come to see in our own situation. Steve is actually trying to express: “well, okay, this is what it is right now, this is what I can do and that is what I’m going to do.”
EC: Yeah! And, “Where I can’t do, I can’t do.”
PSN/CL: Some things have gotten a lot better.
EC: And that’s fine too. I remember this wonderful family counselor that I went to, and was so fond of and who taught me so much, he said, “You can’t take responsibility for everything. You’re trying to and it just can’t be done. Let it go.”
PSN/CL: That’s really hard to remember sometimes, isn’t it?
EC: It’s very hard to remember. That’s why I treasure his words. I wish he knew how much he meant to me and what he taught me. He taught me that we’re not really understanding clearly that there’s an exaggeration of what’s there in all of us. I listened to Charlie Rose who was interviewing Dr. Erik Kandel, who’s a wonderful bioneurologist who wrote a book that impressed me on the neurology of memory. They were talking about depression and schizophrenia. Charlie Rose asked him what was most important and Dr. Kandel said, “First of all, we have got to get the public to be more accepting. The problem is that depression and schizophrenia is there in all of us; it’s just a question of degree. Most of us don’t go into a depression so deep we can’t get out of it. It doesn’t mean we don’t get depressed!”
I think what they’re trying to figure out is what triggers that neurologically because it is neurological but what we have to do as a culture is become more accepting. [Rose] said, “The big problem is that with any mental deviation, it makes other people feel fragile and they don’t want to engage in it.” And I thought that was such an interesting word to use!
PSN/CL: I agree. I really like that quote!
EC: I do too! That’s why it stuck out in my mind. People draw away from children with Autism or anything that feels a little skewed to them instead of thinking, “It’s just a child!” And then what happens is that the child is confused further. So we have to get everyone’s nervous systems calmed down! Then we can listen to each other.
PSN/CL: That’s just wonderful, Eustacia!
EC: I think that lies at the heart of the problem. Talking about siblings, that’s why my other children wanted to be left out of my story. There was a lot that was very painful for them. The fact that they asked to be left out tells a lot right there.
PSN/CL: Because of their feelings and what they went through…?
EC: Yes, feelings, the loss of their own childhood, patterns that get laid down. This is why we must address Autism as a family problem; we must address the problems of the entire family—that includes the siblings. Their childhood is very important too.
PSN/CL: I know exactly what you mean. I know that in our situation, Jaimie’s issues have been particularly difficult on our second child, Jordy. She loves her sister so much but does not always have the confidence to be herself. When she started school last year, she was extremely introverted because Jaimie basically ran the household in terms of routine and what she needed Jordy to do. She wasn’t allowed to make her own choices or voice her opinions because she had to do what Jaimie was comfortable doing. So we’ve been working on Jordy as well by working on everything together: doing some of Jaimie’s sensory diet together, and talking about feelings and issues together so we all understand and say how we feel.
EC: Good for you because that’s all very important! Sometimes I have recommended a counsellor for children, mainly because they’ll often tell the counsellor things they won’t tell their mother. Even today my other children needed to be assured that they weren’t hurting me by telling me their stories.
PSN/CL: Oh, that’s beautiful. You know I related to so much in your book. I think one part that really struck a chord with me was when you spoke about how Temple asked you, “Why am I different?” How did that make you feel?
EC: What’s fascinating is that Temple has no recollection of that. I don’t think she learned she was different until her teens. I think denial is perhaps valuable. I think, perhaps, we deny until we have the strength to handle something. And I don’t think she could handle it. She had the words but it didn’t become real to her.
PSN/CL: That is fascinating. We’re just starting to go through that with Jaimie. We’re starting to talk to her about SPD and Autism. She hasn’t come right out and asked us about her being different but I know that she feels it deeply.
EC: Words aren’t particularly ‘it’. If you can save a little time for siblings alone, for example, you don’t have to talk…you can just have dinner together. Then you can just say to everyone else, “Okay! Everybody out! We’re going to make this. We’re the Chefs!” Just being together to put together a meal or cuddle or something you are doing just the two of you is so special. That’s so important.
PSN/CL: Absolutely! Thanks for talking about that because I know many caregivers feel as though siblings doing get enough of their time. But a bit of quality time can mean so much more to these children. I’d love to talk to you more about the support you had back then because it seems you didn’t have a tremendous amount of support but what you had made a huge difference.
EC: You’re right. I didn’t have a great deal of support but I did have these other supports and I did have activities. And that, as you asked in one of your other questions, is very important to have outside activities where they don’t connect to Autism. It connects to whomever or whatever it is you are. For me it kept me in balance. I worked in the theatre and worked on doing these documentaries. When I left the house, it wasn’t about Autism; it was about the project I was working on. I think this is something that men and women need to understand. When they go out, they’re working at their jobs; they don’t have to take this all with them [what goes on in the house]. It means they come back refreshed and with a better point of view.
PSN/CL: It took me a very long time to figure that one out, Eustacia!
EC: That’s because it feels selfish. You think, “What right have I to do this?” Well, it’s important. One thing people ask me is, “What did you all do together when the children were little.” Well, I acted. I did plays. And the children came to see me. I remember one time I played a mermaid and they went wild! Then they began to put on plays and they brought the neighbors in. There were lots of leading characters and sketchy plots! It was just such a big part of their childhood. Acting was a unity activity—we all did it. And it all came from doing something outside. So you bring into to the family what you do outside.
PSN/CL: That is so wonderful. It’s like you put new energy into your family.
EC: We are too frightened to think we can follow our own impulses.
PSN/CL: That’s so true. Now, speaking of outside activities, you did research for something called the Junior League. Did you want to talk more about this?
EC: I had resigned from the Junior League. Then a friend of mine from there called me to say they were doing these documentaries—one on retardation and one on what was then called ‘disturbed’ children. “You’ve got to rejoin the League and do this,” my friend said.
PSN/CL: That must have been so, so hard for you.
EC: Well, yes. But I agreed to do the project. When I got to Deer Island I thought, “How did I get here?” I went to the State House. Now this is an organization like the Junior League who has no axe to grind…it has no agenda. I knocked on the door and told the secretary that I wanted to talk to him. He took me into his office. He said to me, “I’m going to open up the detention centers where young boys are adjudicated delinquents.” They did have a good system in that they sent these young people to schools. He told me he was going to let me in there because I ‘knew what I was doing.’ He said, “But don’t you come back into my office with a pat little answer!”
Years later, I used him for an interview so then he had a chance to have his say. When he called, he thought he was calling my house but he was actually calling my father-in-law’s house. He gets my father-in-law on the phone and he says, “Thank you very much Mr. Grandin! Thank you so much. We really think this program is terrific!” It was the one good place for a compliment to go. My father-in-law was knocked for a loop—I didn’t tell anyone I was doing this.
PSN/CL: So that must have been both difficult and eye-opening all at the same time.
EC: It gave me a huge amount because all of these schools I went to in New England were very big on education, and the schools are all very good. I interviewed schools all the way from Maine to Rhode Island: special schools. And at each school, some authority talked to me and taught me. So by the time I really met the Bettleheim attitude when old Dr. Curuthers was gone, I knew more than they knew. And I could talk them down. They were angry with me.
PSN/CL: They don’t always like that, do they?
EC: No they don’t. What all of this comes down to was that these were all outside activities. I had someone living in the house so I could do these things. Temple was in school—all the children were. They were gone from 8:30 in the morning until 4:00 so I had that chunk of time. Then I got into the car and went to these different places. It gave me very specific information so that I could face down this group because they didn’t know and I did. I think that it was the head of the department of education in the State House who told me about the Deer Island school—he had been a Sergeant in World War II—who said to me in his heavy Boston accent, “I wasn’t a Sergeant for nothing.” And those boys adored him. They took him for a role model and became like a father to them. I don’t know what ever happened to him.
The Hampshire School came through research. It was one of the schools I went to so that when Temple was thrown out, most cruelly…
PSN/CL: I was so shocked by that part in your book. I was actually crying when I read that part.
EC: That Headmaster should have called me. The situation involved a typical adolescent situation. He should have called me and said, “Can you come into my office? Let’s have a little talk. I don’t think this is the place for Temple.” But he didn’t.
He said to her, “You’re a menace to society! Don’t come back after Christmas vacation.”
And she said [to me], “He didn’t even listen to my side of the story!”
I mean there was more to it, and it was years afterwards before I got over my rage. I finally began to see that it emerged from the other girls because in adolescence, everyone is handed a new body: New way to dress, new way to think, new way to feel, new friends and new activities. Everybody wants to be themselves but also wants to be like everybody else.
So Hampshire School was one of the schools I’d been to see and I liked a lot. I picked three schools, and Hampshire was one of them. Then I said to Temple, “Let’s go see them and you can pick where you’d like to go.” I wanted her to have a hand in her destiny. It was the right school and she loved it. Henry Peddie, who ran the school, was wonderful and, again, a role model. The only thing he asked was that I gave it a week before we called Temple or came to see her. “Let us have a chance to establish something on our own,” he said. I asked Temple if that would be okay with her and she said, “Yeah, I’m okay.”
And I think he was right. It did give him a chance. Then I began to come and see her—it wasn’t far away…maybe about an hour and a half drive—and I’d go up to visit Temple and he would teach me everything he knew. These people put their emphasis on family. This is why it is my crusade these days. That’s why I feel we need to look at Autism as a family problem.
These are men who you ‘get’ from their lectures they enjoy these children. A wonderful therapist I spoke with down in Alabama said to me once, “If you don’t like these children, there’s no point in you bein’ in that job.”
PSN/CL: That is so true for any of these jobs isn’t it?
EC: Yes it is.
PSN/CL: I think that these kids can actually feel whether you’re doing this because it’s ‘just your job’ or whether you’re truly interested in their well-being.
EC: Well, can’t you feel it?
PSN/CL: Oh, of course! Now, I just loved how you wove your story with the important information people need to know. That’s a wonderful way to tell this story. In fact, I think these stories need to be told that way.
EC: You know what? I actually had to fight to have editors accept the story being told that way. Such editors are used to self-help books. And they’re used to ‘How I Saved My Child Through Prayer At Thanksgiving.” And I thought, “Oh, really?”
PSN/CL: It doesn’t work that way does it?
EC: No it doesn’t work that way. And particularly with Autism, I doubt it ever works that way. That’s why I don’t believe those books. Write your book the way you’re feeling it!
PSN/CL: I think the information is a lot easier to digest when you write that way. Here you’re saying, “This is my experience, this is what happened.” And people can take from that what they need.
EC: Exactly. And forget the Power Points. I hate Power points.
PSN/CL: [Laughs] You hinted near the end of your book that, in retrospect, Dick [Eustacia’s husband] had signs of autism as well, and you wondered whether that may have been why he feared/despised his daughter so much. That section was so profound on so many levels. Did you want to elaborate on this?
EC: I believed that Temple’s father had Asperger’s.
PSN/CL: It sort of sounded like he had something along those lines that made him fear Temple.
EC: He couldn’t handle any change in any routine. And he had a terrible temper. Scary.
PSN/CL: I can’t even imagine how difficult that must have been for you…and for them. Eustacia, I have so enjoyed our chat together and the chance to get to know you. We have to let you go for now. Before you go, I would love it if you could share any of your final pearls of wisdom with us.
EC: One pearl that I share in my lectures, and in the book is, “There
was no magic, there was just doing the best I could… and never letting go of hope.” And remember always to just be yourself.
I can’t think of more inspirational “pearls” to share. Thank you so much to Eustacia for giving some of her time to us. And congratulations to Eustacia and Temple on the seven Emmy awards for the television movie based on Temple’s life. It shows that the more we talk about it and the more information we can get out in the community, the more awareness we can raise. And remember: from awareness comes understanding. And that’s so powerful.
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This post originally appeared on our September/October 2011 Magazine