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Autism: Mom’s Who Were Left Out in the Cold

By Kristi | Published November 10, 2022 | 4 Comments

I don’t typically write my posts from a place of anger but today I am. It’s an anger I’ve had since Jonathan’s diagnosis. The target of my anger is a misconception about what causes autism, more pointedly false accusations at who is to blame. Many people know this story but if you don’t, it’s one that bears repeating. Because it’s my hope that this type of misinformation never sees the light of day again and others hearing it will be just as infuriated by the hypocrisy. It began a reign of terror over poor unsuspecting and undeserving mothers, who were indicted with causing autism.

Most of us know Sigmund Freud as a famous psychologist, who believed that almost all psychological issues stemmed from early childhood trauma. Autism, being a mental illness, quickly assumed the same position and assumption of childhood trauma as a causative factor. In the 1940’s Austrian psychiatrist Leo Kanner and Hans Asperger began to explore the disorder. Based on their work, primarily with upper class families, they noted a presentation among the parents they viewed as formal and cold. This led to the assumption that coldness, primarily on the part of the mother, was the reason for autism. 

To add insult to injury, Bruno Betteheim, a renowned professor of childhood development, jumped on the bandwagon. He was prominently a great self promoter between 1940-1970 and was often cited by the media. The theory hypothesized by Kanner and Asperger, became his flagship. He coined the term refrigerator mothers and equated these women to guards at a concentration camp. Stating that their cold and uncaring style was so detrimental that their children retreated into autism. Even worse than the concept alone, was the fact that this theory not only caused irrefutable pain and suffering for countless mothers but took decades before it was debunked by the medical community.

As the mother of a child, now an adult with autism I cannot begin to fathom what these unfounded and reckless theories did to those women. Dedicating your life to loving and caring for your child only to be told over and over that you are the reason for your child’s autism. Even worse, going to your grave never knowing it wasn’t your fault. Living a life of guilt and shame, being blamed for loving your child and doing your best. More importantly, why is it that mothers, in particular, seem to be the lightning rod for anything and everything to do with regard to our children? I ask because I have found myself on the receiving end as well. Chided by a therapist  as the reason why my daughter struggled with some of her issues as a teenager. I take responsibility for my own actions, but clearly she has two parents. No offense to the men in our lives, but there seems to be a gross imbalance as to who takes on the brunt of blame when our children struggle. You see it everywhere, from school to church, restaurants to vacations. What kind of mother must that child have to be acting that way?

Am I angry? Yes and no. Angry that so many mothers who pioneered the way for us, were the scapegoats. Angry that any mother is blamed for her childs autism or any other neurodivergent diagnosis. Angry that too often it is easier to blame, than offer support and compassion. Angry that people can be so quick to believe the worst. I’m not angry at autism. It has taught me more than I would ever have imagined. Knowledge is power and power produces change. Changes in perceptions and misinformation leading to awareness and understanding, instead of blame or shame. 

So here we are in the year 2022, soon to be 2023. Let’s remember and honor those women who despite the label of refrigerator mothers, still forged ahead. While theories of ignorance have been dispelled,they can return if we let them. In fact a recent summary on SafeMinds came uncomfortably close, citing that a mother’s depressive symptoms did not lead to behavioral changes! Just when I feel my anger start to subside, another spark like this comes along to ignite it and remind me that we are still in the refrigerator.

But then I think back to a man I met many years ago. A kind, quiet unassuming man who began his fight for mothers and autism while no one was looking. He literally broke the ice and set mothers free.

You will learn more about him in my next post.