Quiet Uncle Ed was autistic.

My Uncle Ed was a cowboy. Truly! He wore a cowboy hat, western boots, those plaid shirts with fancy snap closures, and one of those impossibly big belt buckles. He smelled like leather mixed with the scent of aftershave. At least as a child that is how he smelled to me, when he would drop in for a surprise visit. I can still see his immaculate yellow and white ’55 Chevy sedan parked in front of my childhood home. He always kept it in pristine condition, even the white sidewalls.

Edwin was the antithesis of John Wayne, however. He was short and stocky and wore a pencil-thin mustache. He rarely talked, but I do remember his smile. He seemed happy with his life. In fact, I often remember that smile when I walked into the kitchen where he was sitting at the table, drinking coffee with my mother Irene (his baby sister). The conversation always stopped when I walked into the room, but not because it was anything private or profound. Uncle Ed would look at me, smile a broad warm smile and say the same thing he always said when he visited.

“You have your Grandmother’s hair. Did you know that? It’s the exact same color.”

I wasn’t sure this was a compliment. It felt more like an observation. Mom never said anything either. She gave no indication that she was pleased with my uncle’s observation. So, I just accepted it as a sort of odd Uncle Ed greeting, and quickly found a way to exit the room.

Uncle Ed was an itinerant farm mechanic, who made his living travelling between the ranches of eastern Oregon and Washington. Behind that ’55 Chevy, he towed everything he owned in his little travel trailer. It was a simple life. Ed would park his trailer at the ranch and start to work repairing whatever the farmer needed. When his work was completed, he’d move on to the next ranch. 

Sometimes he’d stay for a week at one ranch, sometimes longer. Between gigs, he would drop in on our family. I suppose that’s why he smelled like aftershave. When he came to town, he’d clean up, wash his car and trailer, and arrive on our doorstep to visit. He never called ahead but in those days no one did. You just showed up for a visit. 

Uncle Ed was always gone before I knew it too. I don’t remember him ever saying “Goodbye.” Nor did he bring gifts for my mother or either my sister or me. He just showed up, sat and talked quietly with my mother over a cup of coffee.

Many years later when he passed away, my Uncle Phil (another of Mom’s brothers) went to Wenatchee to close down his meager estate. Uncle Ed had “retired” and parked his trailer on a small lot he purchased near Lake Wenatchee. In the process of cleaning out his trailer, Uncle Phil found something he thought I might want to have. Sitting atop his TV set, Uncle Ed had placed three tiny photos in a folding golden metal frame — all photos were of me as a child. There were no other decorations or photos in his travel trailer, just pictures of me that my mother must have given him long ago.

I never realized I was important to my uncle, other than having hair color that he treasured. He never brought me a birthday present or even gave me a hug. Like my mother he must have been autistic. He kept to himself and kept his feelings quiet too. But now that I look back, I realize that he must have loved me and didn’t know how to tell me. All he could do was drop in for a visit, sit at the table conversing with my mother, and admire me from a distance.

Discovering Autism in my family tree.

Many NeuroTypicals who are married to someone with High Functioning Autism soon recognize the autism in our own family trees. First, I realized that my adopted daughter Bianca is autistic. Then I could see it in my mother, Irene. Slowly I awoke to the traits that were obvious in my ex-husband Howard Marshack. Eventually, I started waking up to the many relatives who are on the Autism Spectrum. Howard’s father Irving is classic. Also, there are several of my cousins, especially on my mother’s side of the family.

Soon I could see it in other relatives such as my Uncle R– and a couple of his children. Uncle R– married my father’s sister, so there is no genetic relationship to me. But that got me to thinking, why did my father and his sister marry people with High Functioning Autism?

Maybe that is the wrong question anyway. “Why” is the booby prize if you think about it. Besides autism is much more common than you think. When I first started to study this developmental disorder (autism) about 20 years ago, the estimate then was that one in 100-150 children were born on the Autism Spectrum. Today, the Centers for Disease Control and Prevention estimate that one in 36 children are born with autism.

Researchers suggest the numbers are growing because of better and earlier diagnosis, not because there is an epidemic. In fact, retrospective studies show that the number of autistic individuals in the population has remained very stable over hundreds of years. While we didn’t have the modern diagnosis until only the last few decades, we know that autistic people were mistakenly diagnosed with other disorders long before they could be properly identified.

So, it makes sense that my father and his sister, both of whom were outgoing and intelligent themselves, would each marry a smart, yet aloof Autist. Like my Uncle Ed, my mother and my Uncle R– were reserved “Aspies” who led quiet lives, spent long hours on their special interests, and left the rest of family life to their NeuroTypical spouses to tend to.

Getting past family resistance to the diagnosis.

That last sentence ought to hook you. How do you raise children in a NeuroDivergent home, when you have had nothing but convoluted NeuroDivergent family relationships for generations? How do you clear up the mysteries? How do you help family members come to know who they really are if they have memories that confound them?

Shortly after my mother died I had a dream about her. I saw her walking through the dining room at the home of my Uncle R– and his wife Aunt P– (my father’s sister). Even in my dream state, I knew my mother was dead, but I was puzzled about what the dream was about. I wanted to talk with her, but she didn’t look in my direction. She said nothing. She just walked past everyone silently. I saw her but apparently no one else did, in the dream.

I was only 25 when my mother died, but there was a message in that dream, a message meant for me.  As she walked past my uncle and his wife and their four children, I now realize what we had in common. Autism. Another message in the dream is that no one, but me could see my mother’s message — only me. Many years later that premonition would bear out, tragically.

Last summer, my cousin’s wife K– leaned across the picnic table and asked me if I had any recommendations for her granddaughter. Apparently the young woman was reluctant to return to college because she suspected she was on the Autism Spectrum, and she was fearful of failure. She confided in her grandmother and asked for guidance. I was surprised she asked but was happy to help and referred her to some books that might appeal to a college age young person. Of course, I also suggested to K– that she ask her granddaughter to seek professional psychotherapy back home on the east coast where services are abundant.

I had been visiting my cousins on a wine tour in California at the time and we were having lunch in the backyard of K—‘s brother (who fortunately lives in California wine country). I was surprised when K– asked me for help since the family was very reluctant to consider the diagnosis in the past (and had actually been quite hostile to the subject). But I guess worry for the welfare of her dear granddaughter got her to be more open — and perhaps the recent hospitalization of her husband’s sibling.

I was hopeful that this new interest might lead to more openness in my family. It had been a real struggle getting them to reach out and help one of their own. Five years before the picnic I had suggested that one of Uncle R–’s children was on the Autism Spectrum, OCD and morbidly obese. I urged the siblings to talk among themselves and plan an intervention. However, I was summarily dismissed with some very unkind comments:

 

• “Oh, you think everyone has a diagnosis just because you are a psychologist!”
• “How dare you talk that way about one of our family! And behind their back too!”
• “I don’t see any problem here at all. B– is smart and productive and doing just fine.”
• “Just because you have problems in your own family, you want to find problems in ours!”
• “I don’t want to get involved, frankly. B– has been a nuisance all of their life. I’d just as soon let them pay the price for their mistakes.”

So, I was ignored for five years. I found some old emails the other day in which I implored the family members to reconsider their attitude. I feared that this dear cousin of mine was in “grave danger,” and making some terrible life altering decisions. I spoke directly to this cousin too, but B– did not comprehend the severity of the problems they lived with. K–’s granddaughter is living in a more enlightened generation that is willing to look at the diagnosis of Autism Spectrum Disorder. But my cousin, having grown up with no help and no awareness, faced tragic deterioration — all alone.

Facing the tragedy of untreated autism.

When I got the phone call, I was not surprised but I was horrified. My cousin was in the hospital in a coma. B– had been found huddled in a corner of their house, hallucinating amid the clutter and filth that accumulated over the years of their life as a hoarder. Near death with encephalitis,  they were rushed to the hospital.

The story is long and painful and I won’t go into the details. Thank God B– survived after many months in the hospital and a nursing home. But the home was so infested with vermin that it had to be stripped of everything, so my cousin lost all of their belongings, including family heirlooms that the siblings treasured. After the house was disinfected, it had to be sold to help pay for B–‘s medical care and living expenses — in an adult foster home.

You would think that this tragedy would help my cousins come to their senses, but this is a slow process. For many years they blamed their NeuroTypical mother for the problems. “She drank too much and was too controlling,” they would confide. Never once did they consider why their NeuroTypical mother drank too much. Why was she distressed in her marriage? Why was she a helicopter parent, fighting with every scrap of her being to manage her troubled family?

Time to rewrite your family legacy.

This is the legacy of undiagnosed and untreated autism in a family. I see it often. Anger and resentment divide a family so that they are unable to come together for one of their own. Even in my own nuclear family, it is tough for them to listen to me. If anyone knows about the dysfunction in untreated NeuroDivergent families, it would be me. But by the time I became aware of these problems as an adult and a psychologist, my family had been suffering for generations.

My own children blame me, their NeuroTypical mother, rather than taking a long hard look at the family system that produced these problems. When the worlds of NeuroTypical and NeuroDiverse collide, it can literally destroy families. It doesn’t have to be this way. There are NeuroDivergent families charting a healthier course. But without guidance, it can be so confusing and painful that it is the sorrow that rules the day. 

It will take a lot of courage for my cousins to realize that they got it wrong. There is no blame. No one meant to do harm. But harm was done nonetheless — serious unalterable harm. Before more harm is done, I hope they can forgive themselves and reach out to each other to create a new healthier legacy for their children and grandchildren.

In fact, the other day one of them sent me a text asking for help for a colleague. He wanted to know how to help his colleague who is diagnosed with High Functioning Autism. Apparently she is being harassed at work, and my cousin wanted to know how to get protection for her. Of course, I responded right away with some tips on regulations that protect Americans with disabilities, as well as referral to mental health services. 

Ironically the dream I had so many years ago (when I was only 25) — and before I had professional training in the field of autism — when my deceased mother walked through the dining room of my autistic uncle — that dream was not just waking me up to autism in my family tree, but also a reminder that it would be a long journey before anyone would listen to me. 

My cousin dropped the ball with his sibling and allowed a tragedy to unfold. But if he can make a difference for someone else on the Autism Spectrum, who is struggling and frightened— well that’s a win for all of us. But deep in my heart, I hold out hope for my family too, that they can do even better than help a stranger. If our family can heal and come back together, that would be a terrific gift to give the world.