…having someone on the spectrum in your family has generational consequences ~~~ Ripples.”

The following post, “Ripples” is a story of optimism in the face of adversity, from “Mandy”, a mother with an adult autistic son, whose grandmother, she now realizes was autistic, in those days before “autism” was a diagnosis.

1986 – What I Knew Then . . .

Mother was downsizing again, but this time she endowed me with a box of precious old family photographs. As soon as my baby was napping, I began to look through them and audibly gasped as I pulled out a portrait of my grandmother as a young woman. She was astonishingly beautiful – a cameo on paper. Could this possibly be my odd, depressed, agoraphobic granny who was now 88 years old?


Grandma Inez as a young girl

Grandma Inez came to live with us when I was eight years old, when we moved back to America from living in Germany for five years. Unlike my other Grandma, she had never written us a letter.

I had never met her, but already resented her, as I would now have to share a room with my older sister for the rest of my life, and never get away from her tortuous teasing. Inez was in her 50’s, but looked much older to me. Many of her teeth were missing, she was thin, and she was not the Aunt Bee- type lady who would hug me, tell me how pretty I was, bake me cookies after school, play dolls or hula hoop, or listen to my silly poems or stories. In fact, she spent most of her time in her darkened bedroom, sitting in a chair, and rubbing her arms. She rarely read, and she once told me she only went as far as the 5th grade! She took lots of Milk of Magnesia. She did not understand how to use our light switches! She did not listen to radio, never answered the phone, and had no friends or relatives that she contacted. My mother told us she had to live with us, as they found she was not taking care of herself when they went back to visit her. Her second husband and brother had been dead for 10 years, and she lived in an old run-down house that her mother had bought in 1910.

I remember my mother being frequently frustrated and exasperated, as her mother never wanted to go to the beauty parlor, shopping, or out to restaurants with us. She combed her dark hair back, and put a couple of bobby pins in to hold it away from her face. Grudgingly she would have it cut a couple of times a year, but I think my mother did it. She never drove a car or went out shopping. I wanted to try new hairdos on her, but she never wanted to do anything. She was just a physical presence.

My parents insisted she see a dentist, and she did get a nice set of false teeth, but even later, when one front tooth fell out, she refused to get it replaced. She didn’t smile too much anyway.

My sister and I went on with life, and accepted our grandmother’s oddities, but never understood how someone could be like that. My mother bought all her clothes and shoes and brought them home to her. She never expressed liking anything, but would wear them for the most part. She did help with housework, taking instruction from my mother; and had learned to cook a few things along the way. Since cooking was my mom’s domain however, Inez was relegated to dishwashing, and would do them on the days my sister and I were not.
The most aggravating thing she did was just sit and rub her arms up and down, and wring her hands. Sometimes she would mutter under her breath, and seemed unable to be pleased by anything. I would try to talk to her about school activities or this and that, but it was basically a one-way conversation, and she would rub her arms even more.

Eventually I went off to college and lived in another state. Grandma Inez was eventually placed in a Board and Care home, but I always saw her on holidays and home visits. I sent her occasional cards, but there was no point in trying to call her. They put her very long hair in a braid now, and cared for her increasing health needs. She did not engage in activities at these facilities, and never had a friend.

Grandma Inez is gone now. She died at 93 years of age, and I’m happy we helped her celebrate her 90th birthday, and she got to meet our two sons- her great-grandchildren.

2013 – What I Know Now . . .

When my younger son was diagnosed with Asperger’s at age 19, I did what most parents do – with crushed spirit I worried, I read and researched into the wee hours of the morning, I worried, I asked the Lord why he would make a child like this, I worried, and tried to piece together the broken dreams I had for my bright child – my absent-minded professor. But mostly I worried about the future. But I thought about the past too.

Mike learned to read at 2 ½, but couldn’t tie his shoes until the 5th grade. He corrected his preschool teacher for calling something pink – it was really peach. His kindergarten word for the letter “Z” was Zimbabwe, but he never could learn to ride a bike. He despised team sports, especially Dodgeball, but he loved to swim, and can stim* his fingers on his chest with the best of them. He was well-liked at his small, private school, and, as a Senior, was voted “Most Intelligent,” and “Most Random.” He learned to get laughs by saying witty things that were not germane to the conversation, because, (as we later understood), he had no clue how to respond to the normal social questions of his peers. I will tell you more about Mike in future blogs but I want to go back to Grandma Inez, and how having someone on the spectrum in your family has generational consequences ~~~ Ripples.

The puzzle pieces fit. Grandma Inez had autism, but there was no such diagnosis in her day. There were so many similarities: the lack of social connections; aversion to change of surroundings; food peculiarities; conversational difficulties, especially on the telephone; sensitivity to noise; detesting haircuts, and even the chronic constipation which is so common. I believe her arm and hand-rubbing was her form of “stimming.”*

But what must it have been like to be raised by an autistic mom? For one thing, Mother was very close to her dad, and would go to his bakery every day after school. She always spoke about how much she loved Inez’s mother, who was really the mother figure for her. They spent much time at her house, and those aunts and cousins were there as well. Mother became an avid reader, and longed to see the world. Although very social, she was always very private person, but could it be that she just never learned to express her emotions because her mother never could? She took her father’s death very hard at age 16. One day, she wanted to go to another city, so she hopped in his car and taught herself to drive. Fortunately for her, she was very strong-willed and determined, and in another year she was gone to the city for a high-paying secretarial job. As a wife, she loved entertaining, playing bridge, and going to parties, but she never had a close friend or confidant.

Growing up, the unwritten rule of our house was that conversation was fine as long as it was controlled, and had no emotional overtones. Content, but no process. I had lots of problems identifying my feelings growing up, and often felt alone and sad. I read a lot. I remember breaking down in tears in college, when Mother wrote that she loved me. I had never heard that from her. Finally, in my late 30’s I resolved that I would give my mother hugs when she visited, and although it was awkward at first, she later grew to become more affectionate. Her language of love was not with words, but with giving of time, gifts, and great cooking. I seem to have adopted that as well. Sometimes I have to consciously prod myself to talk to my husband about this or that, as I am not talkative by nature. One side of my brain has to kick in and say, “Oh yeah, he would probably like, or need to know that.” I’m sort of surprised when he’s interested. I don’t say, “I love you” enough.

My parents were saints in caring for Grandma Inez. They fully supported her financially for the rest of her life, and tried their best to show her mercy, compassion, and patience. Their high value on caring for family has had a tremendous influence on me, especially now. I understand my grandmother now. I’m sorry for the times I must have annoyed her, and the impatience I’m sure I displayed to her. I’m glad she became a Christian in her 80’s, and is now completely whole, filled with joy, and at peace in heaven. When I see her again, I’m sure we’ll hug.

*”stimming” is a physical habit, common to those on the autism spectrum, such as flapping hands, finger-popping, rocking, twirling, or slapping themselves. It functions as a way of regulating anxiety, fear, or anger, and helps release excess energy of the central nervous system.