When Temple Grandin was growing up in the 1940s, both her doctor and her father pushed for her to be institutionalized. Her mother, Eustacia Cutler, had other plans, teaching her daughter social skills and arranging speech therapy for her by age two.
Now 68, Grandin went on to become one of the world’s foremost advocates for people with autism, known for promoting more humane treatment of livestock at ranches and slaughterhouses and profiled in an Emmy Award-winning HBO film in 2010. Grandin, who teaches at Colorado State University, spoke in Maine in May 2012.
Her mother — a Harvard University graduate, singer, actress, and playwright who authored a book about raising Grandin called “A Thorn in My Pocket” — will visit Portland on Friday. She’ll discuss Grandin’s upbringing and her own documentary, “Challenged and Emotionally Disquieted Children.”
Cutler will be joined by Dr. Jed Baker, whose latest book explores anxiety, and Sean Barron, who co-authored a book with Grandin about how the two came to understand “social mysteries” through their perspectives of autism.
I spoke with Cutler this week, ahead of her visit to Maine. Below is an edited transcript of our conversation, which ranged from her reflections on Grandin’s youth to society’s discomfort with people with autism.
As a baby, Grandin failed to speak or look her mother in the eyes, detesting being touched or held.
Cutler: “My pediatrician said, ‘Oh I think you’re just an anxious mother.’ I think go straight to an authority. For Temple, it meant by two she was having speech therapy. It made all the difference in the world. Not only was she learning how to speak, but there were other little children there and she learned you have to take into account other children around you. You’ve got to sit in your little chair and wait your turn. This, for all children, is a lesson in how you have to behave, but it’s critical for those on the autism spectrum that they learn that very young.”
Grandin attended school with other neighborhood children, an integration Cutler says more children with autism need.
“By five, when Temple could talk and she had learned how to get along with other children, she was integrated into the little local country day school where the other children went. We’re not doing this at a lot of schools.
That same school today will not take a child on the spectrum. How are you going to teach this child to join the world if you don’t put the child into the world? They said, ‘We will work with you but you’ve got to work with us.’ We did it together. Schools that do this succeed the best.”
Cutler is writing a social history of autism, exploring a lack of understanding between people who have autism and those who don’t.
“We talk about our children being special and that they have special gifts. This is very confusing to somebody from the outside. In a sense they do, but they also are not easy for the outsider.
We’re very busy addressing autism and we’re not looking at us. It has a long history of bothering us, and I think we have to address this. Families are in great distress. Then it spreads out to the community surrounding the family, to the school. Nobody has been informed in the community so they don’t know.
I keep saying to mothers: There are no answers, there are only choices. But choices can be changed. The neighborhood needs to understand that too, if they’re suddenly faced with one of these children in a store or in neighborhood games or in school.”
For children with autism, changes in routine can be deeply upsetting.
“You and I are talking now on the telephone and we understand each other. It feels social and it feels conscious, but actually most of it is neurological. We take this incredible gift for granted. Autistic children don’t have it, in varying degrees. The old saying is, if you know one autistic child, you know one autistic child. They can only see things from a literal point of view, what is physically around them.
[Other people] feel hurt and insulted. They need to understand that it’s not a deliberate fault, the child simply cannot adjust to the difference.”
Parents often approach Cutler after her presentations to privately ask questions they’re afraid to pose publicly.
“They worry about siblings. It’s very hard on siblings. We have to remember they’re children too. Don’t turn the siblings into little helpers. I also recommend that they try to save a little piece of the day to have alone with that sibling. It doesn’t have to be anything sensational, it’s, ‘Everybody out of the kitchen, you and I are going to make dinner together.’
The other thing that’s valuable is a counselor. Children will tell a counselor what they won’t tell their mother, because they know their mother is troubled. Sometimes they don’t even have the words for it.
The other question that comes up is always adolescence, which is the hardest of all. Everybody’s worked hard, the children, the parents, and now all of a sudden Mother Nature says, ‘Well throw away the rule book! I’m going to give you a new body, new feelings, new clothes, new friends.”
The Temple Grandin & Eustacia Cutler Autism Fund offers free webinars to parents, including conversations with Grandin, Cutler and autism authorities.
The Portland autism conference will be held 7 a.m.-4:30 p.m. on Sept. 18 at Keeley’s Banquet Center on Warren Avenue. For information, click here.