I don’t know if you’ve heard the term refrigerator mother. Well see, I’m of that era…and I wish I could remember the first book I read. It was by a doctor. It was a huge book and after I read it, I said, “Oh, this is [my son].” It was about autism.
These are the words of a woman whose son was born in 1964.
Her son wasn’t diagnosed with autism until his late teens.
She continued with information she read in the book. The book said,
The reason we have autistics is because we have cold unfeeling mothers, that the child rejects the mother. Well, I read the whole book and that’s the only thing that I rejected. I thought [my son] has never rejected me. I’ve seen him reject other people. If I held out my arms he would usually come, but you could tell sometimes he did not want to be touched. I understood that. I nursed him for nine months! I read that book and I would think, you can’t get any closer than that. I knew that I wasn’t a cold unfeeling mother.
I just finished reading The Dearly Beloved by Cara Wall. In this book, young parents from the sixties are faced with many of the same experiences as this real-life mother. Their child was diagnosed with autism in those days when the mother was to blame for her child’s autism.
Treatment for autism often consisted of therapy for the mother.
As I read the novel, which was about two unlikely marriages and the relationship between the two couples over many years, I found myself reflecting on the part of the book that dealt with the family whose child was diagnosed with autism.
I read about the fictional family of the autistic child and how they struggled because they were blamed for their child’s condition. They experienced difficulties in their marriage. I felt their isolation and the mother’s anger when the other woman didn’t want to be around her child. I also understood the confusion and embarrassment of the friend who could not bring herself to help watch this child who was not like any child she had met.
Reading The Dearly Beloved brought me back to my conversation three years ago with the mother quoted above, a woman whose child is now a middle-aged man. I also remembered conversations with other parents who shared stories of isolation and of lack of understanding by the medical and education communities.
Remembering the numerous candid real-life stories I heard as I prepared to write Conversations About Autism: Real-life Experiences of Struggle, Acceptance, and Hope, random thoughts popped into my mind.
Here are some of those random reflections about autism and parenting:
- Parents of children on the spectrum in the 1960s must have felt even more isolated then today’s parents because the medical and educational experts told them it was the mother’s fault.
- We have come a long way in the understanding of autism in the years since 1960, although we still have much to learn medically, educationally, and as a society.
- When people ask me, as they do, why nobody had autism forty or fifty years ago, I have begun to suggest that they consider the fact that often the only “schools” which would accept autistic children were residential institutions. While you did not have children diagnosed with autism in your class or in the class of your fifty-year-old children, you may remember some students you considered “quirky.”
- Children with autism forty years ago were probably given a label that we would consider medically incorrect as well as politically incorrect today. If they were not in a residential facility, they probably were kept at home.
- Even as late as the mid 1990’s some doctors told parents of children with autism that they should institutionalize their child because the child would never be able to learn, speak, make friends, or take care of their own needs. Even some educators cautioned parents not to expect too much of their children with this diagnosis. Parents have told me this!
- In recent years, I have been fortunate enough to meet some of these teens and young adults, these children whose future had been painted as bleak. These young people attended high school or even transitional college programs. They are happy and talkative. They bring joy to their families and to others, like myself, who take the time to talk with them.
- Other adults attend an adult day program where they continue to learn and also participate in service work that benefits the community.
- The man born in the sixties is one of those and I can’t help but wonder what early intervention would have done for him.
- Parents of a young children on the spectrum worry about their child’s future even more than other parents worry. What they are told by “professionals” can increase the worry.
- Even today, some grandparents blame their grandchild’s disruptive behavior on poor parenting skills. How can we bring awareness to them?
- Yes, we have come a long way in the understanding of autism in the years since 1960, although we still have much to learn medically, educationally, and as a society.