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.

Who benefits? Follow the Money!

and “nothing about us without us”


I will be attending my first Developmental Disabilities conference at the end of the month. In preparation I have been looking at the state’s setup for supporting autism. Most states now have some mandates requiring insurance coverage for diagnosis and treatment of autism in adults. Requirements for coverage differ from state to state.

The state I live in (MIchigan) has established a “state autism board” to guide and direct autism support activities.
I was not the least surprised to see many persons highly involved with autism, ABA therapists and consultants, Insurance Navigators, and some very active in Parent groups like Autism Speaks. Oh my, can you spot what’s missing???
All of the people profiting from autism treatment and insurance benefits, not a single autistic person among them. !!!
Who gets all the money pumped into the “support” (financial) of autism from government ( national, state, local) ????
Maybe those groups??? hmmmm???
Who decides how that money will be spent? Who decides what treatments and practices are most “beneficial” and to whom ???

( hint: it is probably not anybody who is autistic).

New topic same subject. There are almost no therapists working with adults, and doing adult diagnosis in this state . There are a few who don’t take insurance, cash only. Very few and far between. I wonder why some enterprising medical college, hospital or similar institution of knowledge and learning does not set up an adult autism clinic?
Why are teaching colleges not offering instruction using latest information about autism diagnosis for adults as well as children?
There are hundreds of thousands of autistic baby boomers who remain undiagnosed and who could benefit greatly from therapy for emotional as well as physical struggles and addressing trauma from years of struggles without knowing diagnosis.
Now that most states mandate insurance coverage for autism diagnosis and treatment (in adults too, yes!) I hope to see great things come of the newly available money to be made .

Gerontology and all support structures will be dealing with autistic adults (and autistic adults dealing with them), In very large numbers as boomers all will be over 65 by 2030.

A wise medical school will begin to train specialists in adult autism to meet a need which is going unfilled and is becoming in demand as the older generation learns about adult autism and wonders if they too might be autistic.


Persons thinking ahead will see that beyond the ‘baby boom’ generation there are generations of already diagnosed adults reaching maturity, needing supports, needing help adjusting to adult life, needing therapy and who will eventually also be ageing into a steady stream of autistic adults needing professional care and attention, diagnosis and support of all kinds.


There are only a handful of clinics and diagnosing entities focusing on serving adults in this country. One I know of in Illinois has such demand for services that people make appointments for diagnosis and subsequent treatment up to 2 years in the future… people are standing in line for services.!!!!

Who will see the need and fulfill the potential?

Students considering medical and support careers would do well to consider some branch of autism specialty which actually uses today’s information to diagnose and address autism struggles.

( have you noticed that ABA is not scientifically proven, only results based, and many autistic people both those who have “been treated” and those who were lucky enough to escape due to old age- are beginning to revolt on behalf of children undergoing what is being exposed as damaging and even traumatizing “therapy”?)

Diagnosing neurologists and psychologists specializing in autism are needed desperately.
Hospitals, private practices, psychologists and therapists already in practice could add adult autism specialties to existing services.
I can not understand why the medical communities, usually so quick to see profit in certain branches of medicine, have let this one lapse????
Watching with interest. The next few years should be very informative.
Will autistic people benefit?

Diagnosis Dance Continues

Yesterday I was not at home for most of the day. When I arrived, my husband was waiting with a smile on his face and a story to tell.

Husband received a phone call mid- morning from my GP’s office. They wanted us to know that they had tried to give GP’s referral to the Diagnostic Clinic in the other state and that the Diagnostic office was not making appointments until July of 2020. Did I want to go ahead and make an appointment?

Yes, Husband said, continue to attempt to make appointment. GP’s office said OK and that I should expect to hear from the out of state Diagnostic Clinic in a while for them to set up details, date, get info, etc. Who knows how long before we hear from them?

Then when I had properly processed and digested all of that, and was beginning to settle, my husband (secret self satisfied smile on his face) said.. “then I got another call”

It seems the kind psychologist who had been so ill that our diagnostic session in July had to be cancelled was on the phone, wanting to talk to me. When he learned I was out, he spent a period of time talking to my husband and apologizing profusely about the fact that we had not been notified about our previous cancelled appointment . Husband assured him that we were more concerned for his health than we were worried about the cancellation, Things like this happen. Then psych Dr told husband that he was ‘sort of back’ and that he wanted to make an appointment to do an assessment with me if I still wanted to proceed.
Psych Dr explained to my husband how we would go through joint and individual sessions of discussions about my behavior/traits, etc and that I might be given some tests.

Testing is to take 4 to 6 hours. We would get a written assessment at the end of it, no need to come back again, and further discussion at the end of assessment as well.
We want to do the testing and diagnosis procedure ASAP while the Dr is still strong enough. I know he is in poor health and has officially retired, and I wonder to myself if he sees me as “unfinished business” or if he is curious from a professional viewpoint… or what dynamic or motivation has set this in place… I have no insight into other people’s thinking. But regardless of the motivators, I am profoundly grateful that the good psych Dr decided to contact us, to reach out despite his circumstances, and is willing to proceed.
I am to call him this coming Monday so we can set up a time for evaluation as soon as possible. I understand psychDr’s health is still very fragile ( not expected to recover) so trying not to get my hopes up. I feel stunned, delighted by the knowledge that the doctor is feeling better, that we have not lost him, and that he has actually invited me to complete my sessions with him at this time.
I will still set up an appointment with the out of state Diagnostic Clinic if they phone, as “insurance” backup in case we do not complete the interviews and diagnosis with Psych Dr as hoped.

I will cancel the diagnostic clinic appointment if we are able to complete with Psych Dr, and at a year out I will not feel too guilty if I have to do that. Many will be willing to take my place in line.

Feeling grateful, delighted that Dr is doing better and feeling stronger, and that I have another opportunity to get his opinion..Thankful that he would reach out to me in this way.

What an exceptional man! Feeling so lucky/blessed/ encouraged today. Things like this only happen in story books, don’t they?

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.