Note: Thank you to Laura Hayes for connecting us with Carla Howell, whose brother Charlie, born in 1951, had autism. Our focus is often autism from the 1990s forward. But our genesis was The Age of Autism book Dan Olmsted & Mark Blaxill wrote about the beginning of the first diagnosed cases of autism. Carla's story likely resonates with many in their later years, who have, or had a sibling with special needs. She wrote a lovely, haunting song called What's Inside Your Head as a tribute to her brother's life. You can find it here. Please join us in welcoming her to the AofA family. Kim
By Carla Howell
The story of my brother Charlie, born in 1951, is quite different from most I’ve heard from families with an autistic child. I have only sketchy information about his early life as I didn't meet him until I was 35 years old. Much of what I know came second or third hand, so I can’t be certain that it’s accurate.
From what I was told, my parents had not acknowledged that there was something wrong with Charlie. So when he was just under three years old and my mother was pregnant with their next child, my grandmother sent my parents on a vacation. While they were gone, she got Charlie diagnosed. He had autism, which was rare in those days. Most people hadn’t heard of it.
At some point thereafter, my parents put him in a private care program run by a woman who later became terminally ill and had to close her business. I don't know if he boarded with her or if it was a day program of some kind. Around the time I was born, they put him in a state institution in our then-home state of Michigan because my parents were afraid that he would hurt my brother or me.
When my mother visited Charlie there, he would get agitated, and the doctors advised her to stop coming. As one who held doctors in high esteem, she obeyed, and that was the end of her direct contact with her son.
We moved to Pittsburgh in 1960. I remember my father taking trips to Detroit to visit Charlie and bringing him gifts. But eventually, Charlie quit recognizing him, so my father eventually quit visiting him as well.
My parents said that, as a little one, Charlie was quite good at identifying the make of cars he would see when they were driving around. It was one of the few things I grew up knowing about my brother.
When I tried to ask my mother questions about him, she was always willing to answer. But I could feel her discomfort to such a degree that I'd forget my questions. So I'd give up, again, and remain in mystery about my brother. My experience asking my father questions was similar.
I often struggled to explain why I had a brother whom I’d never met. I feared people would think poorly of my parents for abandoning their son. In truth, they were extremely loving people who were caught up in a time when parents were given bad advice about how to handle a child with a developmental disability, which at the time was considered to be a form of mental illness (like Rosemary Kennedy who was given a lobotomy). I know that their loss of Charlie was a life-long wound for which they both suffered immensely. I can only imagine what they went through before I arrived.
I often thought of trying to meet Charlie but didn’t for fear of upsetting my mother.
Then in 1987, she was diagnosed with cancer. One day, as she laid on her deathbed, she suddenly awoke. In desperation, she mumbled something about Charlie. I took it to mean she was concerned about his future, so I assured her we would take care of him. She seemed to be relieved and fell back asleep.
That prompted me to finally look him up and visit him in Michigan. I expected to see a man in a rubber room curled up in an embryotic position in some horrific institution. But he had been moved to residential adult care. And although he had only a handful of words at his disposal, Charlie was far higher-functioning than I imagined. We bonded immediately.
I eventually became his legal guardian. My sister and I considered moving him to Massachusetts where we both lived at the time. But after having a friend in the business evaluate his situation, we decided that it was a relatively good one. The management was very nice and seemed to really like him. Plus, he was in a program doing piecemeal work where he was doing well. So we decided to keep him in Michigan.
In 2001, Charlie passed away at age 50. I look back on his very limited life with sadness but also with gratitude that I got to meet him and make him part of my life.
I wrote the song What’s Inside Your Head for his memorial service. I share it in the hope that it will be soothing for people with autistic loved ones.
Carla Howell has had a passion for medical freedom since 1993. With a background in tech, marketing and management, she became politically active in 1996. She ran for office three times from 1998- 2002 and headed three statewide tax-cut ballot initiatives in Massachusetts from 2002-2010. She served as Political Director and Executive Director for the Libertarian National Committee and was Communications Director for the 2020 Jo Jorgensen for President campaign. In recent years, she has been releasing liberty-themed songs that she composed and recorded. She leads candidate training workshops and speaks publicly about liberty issues. She also volunteers for the Virginia Medical Freedom Alliance, which advocates for parents being fully informed and having choice as to whether to vaccinate their children.
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