Adult children of Autistic Parents

Did you know ?

When I discovered my own autism, I discovered my mother, too, was autistic.

My mother passed away without knowing of her autism. But when I learned of my own,
I quickly recognized autistic traits in my mother’s inexplicable and incomprehensible view of the world.

I recognized her struggles, her personality quirks, her odd behaviors, her anxiety to please others and to impress them. I began to understand a lot of the “why” questions from my youth.

Diagnosis of my autism, for me was the key to living a healthy and fulfilled life. Lack of information about my autism and my mother’s kept me in a world of “should” and “ought”, a world where my failure to function as expected was the main feature and always behind it my self questioning doubts and self punishment, self hate, why could I not succeed where others had? Why was I such a miserable failure at life where most other people seem to do so much better?

Our mother had very rigid ideas of the rules of life. Everything in her life centered around becoming a socialite. Her home, her family, her clothing, the things she did all were directed toward her idea of what “upper class” people should be. She wanted desperately to be rich and famous, glamorous, idolized and admired. She lived a life of frustration and no doubt also saw herself as a failure if she ever gave herself over to introspection, but she never once admitted to having a personal flaw, that I can recall. ( and remember my perception was definitely skewed by my own fears anxieties and autistic lack of insights) Why couldn’t she achieve a social life? She never knew.


Everything in our mother’s life was moderated by “what will the neighbors think?”
You must understand, my perceptions are autistic perceptions and I had very little understanding of any of the others of my family, their motivations, their feelings, their struggles. I was busy being overwhelmed with my own, attempting to avoid physical and emotional punishments and constant criticism and scoldings, I was overwhelmed with every day survival, trying to please and most of all appease others in our family (as well as anybody I had contact outside the family) and had only my autistic mother’s perceptions to guide me and explain my world to to me. I stopped asking for her help and insights around 3rd grade (8 years old?) when I realized the futility of that, and recognized the fact that she was not interested in hearing about any of my problems or struggles. ( She had plenty of her own and her autism kept her from seeing mine) I understand that now.
I displeased my mother so often because she saw her own autism in me and wanted to correct it, punish it, wipe it out. My autistic failures reminded her too much of her own weaknesses, flaws and struggles and infuriated her because I seemingly willfully continued to annoy her by my struggles, with her seeing these as deliberate disobedience and lack of compliance through resistance of will rather than lack of understanding what she wanted of me at any time.
Her hidden and not really understood message to me was “don’t be autistic”… yeah, that was it.

No wonder I had a miserable childhood! At least I can make sense of it now.

I got my ideas of life’s ” should’s” and almost everything else in life really wrong! Nobody’s fault!!! Nobody knew about autism, either mine or my mother’s, nor that of anybody else in or out of the family in those days.

I was told by my mother’s sister and their own mother (my grandmother) that my mom was “simple”.

In truth, she was extremely dyslexic and probably had other struggles with sensory processing. She could barely read and write, had echolalia, used music she learned as a child to express her feelings ( singing some songs over and over and over for all of her life in certain situations).

I think of my own inability to visualize (aphantasia) and my fascination for taking photographs of things I see, and want to remember. I have thousands of images stored in my computer so that I can go back and look at the images which I can’t visualize or remember in a visual way by picturing it in my mind’s eye.

I was shocked ( oh no, I have become my mother!!), when I realized in remembering that our mother was obsessed with taking photographs and that she had amassed a huge collection of printed images, almost all of her family, taken over the course of the years.
Our mother’s photo obsession drove all of her kids and her spouse crazy. Every activity should have a photo, every event needed to stop while she posed us and took repeated photos. She was always excited to look at the photos when they returned from being developed.
I suspect her obsession with photo taking was because she could not visualize in her mind, either. In those days photo taking was very expensive, both to purchase the films and to have the photos developed. I remember my father complaining about the expense!
On top of our mother’s likely aphantasia, add that she was not able to read much at all because of her dyslexia. She struggled to write due to the dyslexia as well.
Her struggles were far worse than mine… I could read and write and had a gift for words, and I am amazed that she accomplished all that she did without these things.
Mother’s hearing processing and her visual processing may have been struggles for her as well, but I will never know. I know she loved movies and television, loved listening to soap operas on the radio, and enjoyed popular music from her childhood onward.

Now that I understand my mother’s autism and have a much better idea of how it must have affected her, I can only admire that she managed to raise 4 children, kept us clothed, washed and fed, kept the house clean and that we all survived and became independent citizens functioning in society.

I grew up in the 50’s and the 60’s and in those days, all failings of children were blamed on poor parenting.

I blamed my mother too, and for some things like her deliberate cruelty, I still do blame and resent her treatment of me. Deliberately causing pain is never appropriate, physically or emotionally.

I can not excuse that part of her behavior. But I can better comprehend it. She had so very few tools available for overcoming her own struggles. She had no insights, as I have been blessed to obtain through today’s knowledge of autism and of my own diagnosis. She had to struggle all her life and never knew about her own autism. She never had the opportunity to gain insights and self understanding, to see her world differently, to make adaptations that might have allowed her to grow and thrive. She never knew.
Today, knowing my own autism and knowing that she died never having the blessing of self understanding needed to adjust her life and her struggles, I am better able to forgive so many of the struggles of my own life which I had been taught to blame squarely on the parenting I had been given. And I can finally forgive her as well.
We survived, how we did it, I am not sure.

Knowing about the autism in our family has been a key to my understanding of my childhood, my youth, my struggles all my life.
Knowing about autism in my mother and possibly in other family members has allowed me to understand all those painful “why’ questions and helped in the healing.

Did you know????

Now I know of my own autism, I wonder how I did as a parent?
Nobody knew about my own autism all the time my kids were growing up.
I did not learn about my own autism until my offspring were born, and grew up to have homes of their own.
Nobody knew back then.
Diagnosis is life changing.

Diagnosis attempts continue

Yet another attempt to find somebody who understands adults, more specifically OLD adult women with autism.

This struggle is rather the norm for adults seeking diagnosis in the USA rather than an uncommon report.

I am blessed to have insurance that will help, but it still will pay for only a small portion of the diagnostic fees, and will not pay, of course, for all of the travel and personal expenses entailed in attempts to find somebody qualified and willing to work with older adult autism diagnosis processes.
The ability to travel or to absorb expenses not covered by insurance is non existing for so many adult elderly.

The best hope for ageing populations with autism is to familiarize the medical and supportive communities with autism struggles and the ways this might present itself in older adults. (We who have not had the advantages of diagnosis and support in youth, and who have largely had to struggle through life with little understanding of all the ‘whys’ surrounding our varied forms of disability and how those have affected us all our lives. )


I had talked briefly with my GP (general practitioner) DR about my search for diagnosis and she agreed she could not help, did not know of anybody who worked with adult subjects. She noted the input from my previous unsuccessful attempt with the neurologist.

Evidently the following/second attempt at diagnosis psychologist’s appointment notes were not forwarded to her as I requested, perhaps pending my diagnostic appointment which never happened due to extreme illness on the part of the psychologist.

The GP Dr has been aware of my struggles with anxiety and depression, and had prescribed meds for me about a year ago. It helped with my mood, and I was able to experience time with no anxiety, but at the cost of sleeping 4 or 5 hours during the day and at least 10 hours each night. I was sedentary and my weight shot up 25 lbs in a 2 month period. We decreased dosage but I was still lethargic and feeling unhealthy in spite of a less anxious outlook on life. I made the decision to go off the meds.
Anxiety is far less since I retired, and my understanding of how to control situations that might call up stress or distress (by avoiding them!) has helped greatly to reduce every day anxiety. Depression seems to be lifting as my feelings of being helpless to deal with so many day to day situations (mostly involving other people) have been fewer.

I saw the GP for my yearly check up yesterday and after my explanations about struggles with communication (which she has experienced with me herself, losing patience when i tried to talk to her and ask questions in the past) she has become more empathetic, or my perception of her recognizes this in her, where in previous encounters that factor seemed to be missing.

Dr GP agreed ( after some verbal wrangling and misunderstanding on both of our parts but mostly mine), to proceed with referring me to the Adult Autism diagnosis clinic in another state. It will entail a long drive (over 8 hours) and overnight stays both before and after the day of testing/examination. I will learn more when the clinic calls me to gather information and set up an appointment.
I have read the books the Autism diagnosing doctor has written about elderly autistic people and how diagnosis differs from standard diagnostic procedures for youngsters.
I have struggled recently to listen to a podcast interview with her. (my auditory processing is not very good) and I am sure she will either be able to pick my much-adapted autism out or tell me I am not autistic with accuracy.

This will be the ‘last stop’. If diagnosis is not autism I will have to look elsewhere to understand all the things that learning about autism seems to have answered for me. I can not ask my very supportive spouse to continue to invest our retirement dollars in a quest that will be of no financial benefit to anybody, and will only confirm what I am sure of in my own mind and heart. ( the benefit of official diagnosis for me being credibility as an autism advocate).
I will no doubt discuss the appointment and everything surrounding it in more detail as things fall into place for the event to happen.
Mean time I worry.

The neurologist of my first diagnosis attempt told me I was not autistic with an aura of almost gloating smugness, and the emotional devastation I felt because of his descriptions of my so called “other diagnoses” still gives me anxiety and dread.
I know his knowledge (or lack thereof) of autism was from the 1960’s-70’s when autism was not understood as well, and was not accurate, yet the damage done through his assigning so many other labels of impairment/mental illnesses had/ and still has me shaken to the core. The childhood and early adulthood me believing I am wrong and bad about everything surfaces and remains strong when I think about this, it is so easy to slip into the old habits of my approach to life for the first 65 years – all my fault!!!



One small part of me is fearful this will happen again.

So many people, women especially, in some of my on line autistic groups report having been given multiple labels for serious mental disorders and having been treated sometimes for years, for these disorders with little to no success, drugs and therapy simply compounding struggles, making one inert, or actually making things worse.


Society and medicine are just beginning to understand autism and how to recognize it, especially in aged persons who have had to learn coping mechanisms on their own, and to find their own way. I look forward to seeing adult diagnosis and understanding of autism before I die. I think it is coming. The more we can do to raise awareness of adult autism and help establish criteria and availability of information to diagnosing and supporting entities, the sooner this will become reality.