The Evolution of the Culture of Autism

The recent story of the Stauffer family who adopted a two-year-old boy from China, later diagnosed with Autism Spectrum Disorder, and decided to “rehome” him because of the diagnosis has weighed heavily on me.

My 5-year-old son has autism, and I couldn’t imagine my life without him. Yes, autism makes our life challenging in ways I never expected, but a parent’s love should be unconditional. This got me thinking about the evolution of the culture surrounding autism, both of how far it has come, and unfortunately, the work that still needs to be done.

Before I had a child with autism, I knew very little about the disorder. It became my mission to not only educate myself and my family about autism but to find the best resources and services for him possible. Giving up was never an option. But autism has a hidden history of some parents, not knowing what else to do, handing their children over to someone else they felt was more equipped.

Years ago, many parents were urged at the advice of physicians to institutionalize their children when they displayed the symptoms of autism. The diagnosis didn’t even exist until 1943, so children were misdiagnosed with schizophrenia or other severe mental illness. Donald Triplett was one of those children.

Donald was born in 1933 to an affluent family in Mississippi. Early in his life, his parents noticed his severe social-emotional challenges, developmental delays, and an atypical fixation on particular objects. At three years of age, Donald’s parents were encouraged by their physician to turn him over to a state mental institution and forget he ever existed. At that time, the family felt unable to cope with Donald’s severe behaviors and made the difficult decision to follow the advice of their doctor.

A year later, against medical advice, they brought Donald home and sought help. They found Austrian child psychiatrist Dr. Leo Kanner who followed Donald and multiple other children who displayed similar behaviors for several years. Finally, in 1943 in his research, Kanner would refer to Donald as Case 1, Donald T. In other words, Donald would be the first documented case of a child diagnosed with what Dr. Kanner called “autistic disturbances” later known as autism.

Donald went on to live a happy and fulfilled 86 years. He worked on a farm as a young boy where his excellent ability to count and measure was put to good use. He graduated from high school and went on to earn a bachelor’s degree in college. He spent most of his career working his family’s bank. He learned to drive and spent his retirement traveling the world.

Donald’s story gives me hope for my son. But it also raises many questions. When he was growing up, his parents had little to no support. They were told they weren’t equipped to raise their own son. But they knew they were the experts on their child, and they didn’t stop until they had answers.

But why, decades later, do many families still feel under supported? Autism acceptance has become a global movement, yet public education still lags in providing an appropriate educational setting for many children with autism.

Experts say an autism diagnosis is possible by age two, and early intervention provides children the best outcome. Yet the average age of diagnosis is after the fourth birthday, and they’ve missed that vital window.

But the most discouraging question to me is, how could a family, more than 80 years after Donald Triplett had been “rehomed” to an institution, feel they had so little support they had to give up on their son?

I am so grateful my son wasn’t born in 1933. Today in 2020, my son has access to knowledgeable physicians, effective therapy, and I have never been told to give up on him. I’ve never been told I am not capable. When I have asked for help for my son, I have gotten it.

But every parent of every child with autism deserves that same support. To the Stauffer family that felt they had to give up on their son, I am sorry. I can’t imagine how difficult that decision was. I wish I had been there for you.

Don’t judge people for the choices they make, when you don’t know the options they had to choose from. – Author Unknown

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Amy Nielsen lives in Orlando, Florida. She is the proud mother of four children ranging in age from 3-30! She and her husband, Brent enjoy sports and traveling. Amy is a former teacher with 20 years experience, a freelance writer, and special needs advocate. Her mission is to help educate and empower families of children with disabilities to focus on their child's interests and strengths.