Subtitle: Autism and heredity, a snapshot of my story…
Today is August 28, 2016, and if my mother Juanita was still living, she would be 104 years old today!
Therefore, “Happy Birthday Mom wherever you are!”
However, Juanita did live to the ripe old age of 90 and did surpass many of the reported statistics about autistics tending to die young.
Juanita was never diagnosed as being autistic, but I have spent many hours analyzing my family, and concluded that she was on the Autistic Spectrum and would have probably been given the diagnosis of Asperger’s Syndrome which is still in vogue outside of the United States.
In fact, Juanita was not the only autistic sibling of five, her younger brother Tommy and her younger sister Carol were far worse or more autistic like I am.
What is interesting to me is that each and everyone in my family who is or was (deceased) on the autistic spectrum, managed to have a reasonably normal life in spite of their neurodiversity and any accompanying physical or mental disabilities that often results as a comorbid condition.
However, there were two exceptions. My mother’s brother Tommy, the youngest of the five, made it to adulthood, married young, had two children, but quickly regressed into a more severe autistic state in his twenties, resulting in living off and on in either a mental institution or a half-way house for the rest of his life.
His story was pretty sad because when this happened, his wife divorced him and never permitted his children to know him, and when his children became adults, they made no effort to contact him nor check on his well being. He died at the age of 57.
The other exception is my female cousin Nancy who is three weeks younger than me and is also an autistic savant.
In fact, growing up we always considered ourselves twins and often wondered if either her mother or my mother gave one of us up to the other. 🙂 [I’ll save our savant stories for another post if anyone is remotely interested]
Her mother Carol was an easy one to figure out as being on the autistic spectrum, because I’m just like her, a little on the crazy side 🙂 with the dreaded habit of thinking out loud, i.e. having conversations with one’s self :), and potentially appearing as a flaming schizophrenic who thinks there is actually someone there listening to their opinions or rants. 🙂
[for the record, I am not schizophrenic and neither was Aunt Carol, we’re just quite vocal with our thoughts 🙂 ]
However, this segues back to Nancy, the second exception in my family of autistics that had less of a normal life than most of us.
There is a comorbid condition with autism called Scoliosis and many are unaware of that. In essence, that is a curvature of the spine, shared by Nancy, her brother Michael (also on the autistic spectrum), and myself.
Fortunately, scoliosis is a minor problem for Michael and me, but Nancy’s was far worse requiring several spine surgeries and body casts all the way into adulthood, but that’s not the worst comorbid condition that Nancy developed. Like many on the spectrum, she developed a subtype of schizophrenia which often interferes with her life.
To be fair and accurate, Nancy did become a Special Education Teacher and from what I know, was very good at it. She was unable to have children of her own due to the several back surgeries and frequent spine X-rays, but this career gave her the opportunity to be a pseudo-mom while the real mothers were at work trying to support their families.
Above I stated there were two exceptions in my family that had less than a normal life as an autistic, and maybe one could assert that there were actually three, my mother Juanita.
Like a lot of autistics, my mother had difficulty with relationships, both in marriage and just having friends in general. Her first marriage was the longest, around eight years, but her subsequent relationships lasted less than two years, including that with my father Mel, who was also on the autistic spectrum; look up “assortative mating” if you’re interested.
Prior to my birth, I only know things about my mother Juanita that were either shared by her, by my grandmother, or by my aunts. But what I do remember as observations was that my mother had maybe two friendships of short durations during my entire life. To me, that is very sad and another example of how many of us autistics are clueless in making and keeping friends.
On the flip-side, my mother dedicated the first eighteen (18) years of my life to me, taking care of an autistic child, and trying all sorts of things to help me improve and survive.
And it worked because I did survive a tumultuous childhood of illnesses and bullying, and learned how to be a strong individual based on her example.
Therefore, we autistics may have a variety of deficiencies based on a non-autistic’s point of view, but we make up for it by being resilient, innovative, creative, and honing in on a basic trait shared by most mammals, the innate instinct of survival no matter what!
My mother Juanita gave me all of those and taught me to be a strong individual with character and honesty, and those gifts are priceless.
“Happy Birthday Mom, I miss you…”