Was there LOVE????

Something is missing from the lives of autistic children.

If the insights I am gaining from adult reports of their childhood are any indication.

Growing up I truly believed my family hated me and could not wait to get rid of me,
did not want to hear from me, was not interested in anything I had to say, how I felt,
what I thought. I believed they looked for reasons to try to hurt me, to shame me, to humiliate me, to cause me emotional pain and to punish me. I learned to be wary, defensive, self protective, afraid and anxious.

I still remember vividly almost every incident in which I was treated this way . To be fair, my perceptions might have been skewed due to my very poor visual and audio processing, which did not allow me to experience anything in “real time”. I was not equipped to understand a thing I saw or heard (human interactions face to face or in any person to person settings such as family interactions, school classrooms and free time association with others, watching tv, movies, or today watching you tube or other online visual and audio presentations). Nobody knew or understood about autism back then. I do understand (now) how it happened.

I remember family sometimes said they loved me, but in day to day experiences it was very difficult to believe. I remember my sister asking me if I believed I was loved, and I replied that I believed my mother when she said she loved us. That’s what she said, one did not doubt mother!
But I never felt loved. I never understood the concept of love. Nobody ever explained it. I could not see it, so I could not feel it. Looking back, I can see signs ( now ) of concern and caring, but at the time of my family and youth experiences growing up, I did not see or understand. Nothing in my childhood was ever explained. I was simply ‘told’ and had to accept whatever i was told, and accept it immediately, whether it was good or bad.

I rely on my autistic brothers and sisters on several forums to give me insight and understanding of how my autistic life experiences compare with others’.
I rely on insights they provide to make adaptations or adjustments in the way I see my world. They explain much that has remained hidden to me all these years. I asked on a couple of the larger forums (over a thousand members in each) this question.

“When you were growing up , did you feel loved?”

Hundreds of answers poured in over a period of days. If the answers I got were any insight, the majority (approximately 19 out of 20) reported that they did not feel loved. I was not alone!
I had suspected as much due to the large number of posts with memories of difficult struggles and cruelty reported of childhoods past.
In other conversations, Autistic parents swear they will not intentionally make their child feel unloved, uncared for, ignored, or cast aside, isolated or as though they were being discarded.
I believe it is human nature for parents to want life to be better for their children than the childhood they experienced. (but I don’t know many people who had happy childhoods).

I then asked a follow up question and asked the people who gave me insights to answer another question. “if you grew up unloved, what could have changed to make you feel loved?” and
” If you grew up feeling loved, what do you think made you believe you were loved”?

Overwhelmingly, the answers to this question were so moving. First of all, many of us needed to feel safe. Many of us remembered frequent emotional or physical punishments, criticisms, pointing out of weaknesses and scoldings, never feeling free to be themselves, feeling the anger, disgust, contempt and revulsion of their family members and just waiting for the next round of attacks on their bodes and or their psychological/emotional existence.

Most said they wished they had been listened to, encouraged, had explanations or discussions about so many aspects of life, had been approved of, had been included in family activities, had been at least sometimes the focus of loving and kind attention, instead of being ignored, criticized, cast aside or isolated.
One point brought up over and over, was being kept from family outings, family events, family activities that other siblings were included in.
I remember being sent to my grandparents, who did make me feel loved and worthy and who encouraged me, engaged me, and were kind to me.
I was in about 4th grade when I finally realized that the weekends I spent at my grandparents were weekends that family outings without me happened. I got full reports from the sister next younger, about where they went and what fun it all was. When I protested, and asked whi I could not have gone too, I was told “you had your special time with grandma and grandpa”.

The weekends when my siblings went to visit grandma and grandpa, the rest of us stayed home.

Many others had similar memories. Not welcome in my own family circle to do the fun things they did. What message does that send?


I think I really did not understood about all the facets of love and all its implications or the ways it is shown. I know I tried to make my own children loved, and as young adults, they report I succeeded in that. Somehow that is so precious to me. Of all the things I longed for as a child, to feel I was loved was at the top of the list. I never felt I succeeded with my parents or my siblings. Love may have been present but I did not experience it. I did not believe it. How much of my experience and its interpretation was the truth, and how much was my processing struggles and my autism keeping me from understanding???

I have struggled, as many autistic folks do, to sort my emotions and understand them.

Not until my learning about my own autism, and examining my previous experiences through the understanding of how autism has affected everything in my life did I have more than crumbs of understanding taken from clues in my early life, and most of it I “got wrong” or was incompletely informed. It is a lot to digest, it is a lot to understand. I am still working on sorting it out.

I hope that autistic children today are getting explanations about everything, the nature of things that are not black and white cut and dried in life, things like emotions- love, hate, how they can happen in a relationship at the same time and what it means. How emotions work, how to recognize them, how to understand other peoples’ emotions and what to do about it all.

Parents of autistic children, please keep explaining everything… what, how, why, when…. it is so important your child’s understanding of the world, their place in it, and to their sense of self and their perception of life as it unfolds around them. Don’t assume they understand what seems evident to you. I am fully intelligent, and I can learn, but sometimes I need to have the nature of things explained. In the case of those with auditory and or visual processing struggles, a lot that is evident to neurotypical people can be missed or misinterpreted.

Take time, explain everything. Your children will thank you some day.

Autism hazards

How being autistic might predispose us to behavioral hazards.

I have spent quite a while trying to learn more about autism’s association with some of society’s most difficult struggles.

Exact numbers are difficult to gather, and the numbers give here have been extrapolated by averaging results of studies I examined.

There is much to be learned and decided, but there have been studies on autism and social struggles such as homelessness, substance abuse, eating disorders, suicide, crime rates, jail and prison time.

Here are some of the statistics I found, averaged by combining results, some were significantly higher or lower than the averages I quote here from each group of studies I looked at. I used studies done since 2015, and there was actually very little research done before this on the subject of autistic involvement in each of these social issues.

Autistic people are 7x more likely to struggle with substance abuse.

up to 12 percent of homeless people show features of autism in one recent study. T

here is still lack of much research being done in this area.

One survey of adults admitted for rehab in clinics across the country said up to 30 percent of the people admitted were autistic.

Up to 23 percent of admissions ( in a similar nationwide clinic survey ) for treatment of eating disorders were autistic.

Autistic people are 9x more likely to die by suicide, and studies report up to 60 percent have had suicidal thoughts or attempts.

Up to 40 percent of autistic people report strong symptoms of depression.

27 to 42 percent report struggles with anxiety

Most studies I looked at regarding crime and incarceration were based on general intellectual disabilities rather than on autism, so I will not comment on that, but I know there are new studies being done regarding those statistics and autism.

One thing I have observed is that today people being admitted for treatment for most of these struggles are often being screened for autism. This is not universal yet, but it is a trend which is being reported as recently as 2018 and continuing through today. I find that encouraging.

None of these numbers are scientific from the point of my collecting information and extracting information and averaging it.
I am not a scientist. I am a concerned old lady bystander hoping to bring information to light so that it can be used for better understanding of adult autism, better self understanding, and perhaps better lives through self knowledge and application of coping and survival skills or seeking help if one struggles with one or more of these issues.

You are not alone! there is help available. Please reach out and ask for help if you are struggling.

Crisis lines and local hospitals usually have lists of supports available in your area. Your doctor or social worker can also help you find what you need. Tell others in online autistic communities and ask how others have dealt with these issues. Reach out to family or a friend.
Just know you are not alone, and it is OK to admit you have struggles.
A better life is out there but you have to take that first step. I hope and pray that you do.

Autism perfectionism

autistic self blame, autistic depression, autistic guilt

Or why I must always be right.

I grew up in fear of failure. I grew up feeling unworthy of love, feeling the anger

of my family, my peers, my teachers. I grew up feeling a desperate need to appease and please.

If I made a mistake, i felt absolutely pounded and persecuted and hounded by whatever that mistake

may have been.

Family especially, Repeatedly throwing my failures in my face and reminding me what a miserable crumb of an excuse for a real person I was.

Family structure was built around how bad I was, how wrong I was , how every aspect of me was undesirable, disgusting, inept, a failure. There was no excuse for my wrongs. I was the worst person on the planet. I wanted to die. Every night from about the age 8 until I was in my late 20’s I went to bed hoping and praying I would not wake up and have to face still another day in this hell. I feared all of the constant corrections, blame, anger, frustration, punishment, criticism, bullying, threatening, and humiliation due to public castigation (at school, church, and at home, the worst was to have other “good” people observe and approve the punishment, corrections, humiliations, etc.

Perhaps there was praise. Perhaps there was approval, perhaps there was encouragement. I missed it completely if there was. I think there might have been.
I clearly remember my sister( I must have been around 12) telling me that when she asked my mother why she complimented my drawings, my mother told her it was because “I needed it”. Clearly sister resented that I could gain praise for something and sought to negate any positive feelings it might have brought to my mind. To point out how little I deserved anything because I was bad and wrong, the family’s assigned role. I did not deserve positive attention of any sort. If I got it , that was a lie. Well, it worked. Family dynamics were a mess. I learned from that not to trust anything good i was told about myself. I wonder if that is why praise did not register? ( If I was praised or if I sought praise or recognition at all after that?).

I learned years later that I was the family’s “focus” or “scapegoat” whose failings were blamed and punished so that the rest of the family was free to deny their own weaknesses and shortcomings .

In such an atmosphere I developed not only fear of criticism, but huge self contempt and self blame. I knew I was different! I knew I could learn, and I spent almost all of my time striving to “get it right” and to be right, in every situation, learning every fact, whatever I did… I was afraid to fail. If I suspected I could not be perfect at a thing, I refused to even attempt it. To fail would bring shame and painful criticism down on me.

I read and posted in an earlier blog about how deeply I was moved when I read about the relief that older autistic adults expressed when they learned of their autism diagnosis. It was so good to know that all your struggles and pain was not ” ALL OUR FAULT.” What a relief! This was expressed over and over again. Having been given labels all our lives as failures , it was such a relief to know it was autism which played a part in our struggles.

I could not fail. I lived with huge anxiety all my life, fearing I might make a mistake, make a wrong choice, make a bad decision, get less than a perfect score on a test, be wrong or bad in any way. It hurt too much. I became reclusive and extremely watchful for any signs of persecution, mockery, blame or criticism. I was angry and defensive. I was hypervigilant to make sure I was as perfect in every statement I could make about any topic. Mostly I did not try anything within the realms of social behavior, because by age 10 it was evident that I could do nothing right. I did not even try.. learning was my only strength and I strove to be right in all facts and information . Sharing information was the only way I was able to interact with others. ( see how autistic rigid thinking worked here?) Nobody spotted any of this, it was deeply embedded in the dysfunction of my family and my incorrect autistic understanding of the world and its ways. I understood what was wrong with me in every possible way and understood it deeply. I felt huge shame and guilt for being such a failure. I could not even get it right in a family , (who sometimes said said they LOVED me!!! what a crock, I couldn’t believe that!!! ) how could I possibly function in any way outside the arena of failure? That was then, today I understand how it all happened.

Fast forward to today, when I tried to find information besides the article about the huge relief older adults find in autism diagnosis.
I wanted to see what discussion there was about the huge burden of guilt that so many of us evidently carry. I was at first surprised to find article after article and page after page about the burden of guilt that parents carry for their autistic children. How they feel guilty over everything about their child’s autism, about how their child’s autism affects them. How horrible their lives with autistic children have been, or still are.

I found one study done around 2017 that decided that autistic children did not feel guilty because they had, supposedly, no theory of mind… not a thing more.

Knowing and being told repeatedly as a child that I caused my parents such misery, that I was the problem in the family, that I was wrong and bad in every possible way, that I was the one who needed “fixed”, that I was a huge pain and trouble and cause of disgust, anger, and annoyance, pain and loathing…. supposedly I did not feel bad about that. Supposedly I had no idea. ( shaking my head)

Parents of autistic children, I am sure, go through every possible emotion and have many struggles. Many of them are autistic or have other issues to contend with as well. Life offers struggles for everybody. I understand now what happened all those years ago within my extremely dysfunctional family as well as in the greater context of my autism diagnosis. I see much more clearly now how it all happened. Nobody knew!

Wouldn’t it be great if we could find ways to stop the blame and learn how to work together to find the best possible ways to make life better for all of us?

In my day, nobody knew! Not my autistic mother, who went to her grave never knowing of her autism, nor my other family members, nor almost everybody in my level of society at the time I grew up.

I like to think that today’s autistic children have somebody who explains everything to them,
who encourages them, who accepts them and appreciates their best, and who lovingly and patiently guides them toward greater skills and successes.
I like to think of today’s autistic children growing up knowing and understanding their own strengths and struggles and being understood, educated, and supported. Maybe there are more parents who don’t blame the child, parents who are also supported, who understand and approach with humor, patience, and kindness instead of blame and anger.
I like to think many of today’s autistic children are likely today to have better success and a better start in life. I hope so. Knowing about autism at an early age seems like such a useful thing to find tools and techniques to better succeed in the world.


Parents: don’t just talk about your child, talk to them! Tell them they are not alone, that you are in this with them and that you as families will figure out ways to make it by working together.
Explain everything down to the very smallest detail. Explain why. Explain how, explain when and where.. explain what you understand about struggles and overcoming them. It is crucial to your autistic child’s understanding and success.

Parents: Don’t talk to others about your child’s weaknesses and failures anywhere that they will overhear and misinterpret how difficult life is for your whole family at times. Your child did not choose to be autistic, it is not his or her fault. He or she struggles with all of it, too. Struggles in life are part of living. Autistic struggles are part of many people’s lives. Making this the responsibility of the person with autism is blaming him or her for a choice they did not make. Seeking miracles or expecting behaviors the person is not capable of only adds to the shame of the blame. “if only” . Living in wishes , dreams, hopes, of what might have been if only… can’t help.

No answers, no solutions, don’t blame, lets all work together to find the way to a better life for all of us.

Autism as a GIFT?

I will have to be convinced of that!

There is division among autistic folk and much discussion currently about autism’s gifts. Some say autism is a gift! I see this as backlash against stigma and as part of the “think positive thoughts” school of ideas. I understand it is a way to celebrate diversity and to encourage sensitivity and to open minds.

I also view this “you are not disabled, you are gifted” as a form of invalidation and a way of glossing over the struggles that the vast majority of autistic people must deal with. Those of us fortunate enough to be able to argue these concepts amongst ourselves might be losing track of so many of our autistic brothers and sisters struggling in care facilities, institutions, and needing major supports in every day living.

I deeply believe that every life has intrinsic value of its own, regardless of ability or disability.

I believe that it is important to recognize talent and giftedness, all the forms of “otherness” that life offers us as individual human beings, but I believe in being honest, too.
Many of us do not have obvious or “useful to society” gifts.
Are we of less value?

Many of us struggle and struggle deeply, and this also needs to be respected and acknowledged.

I ( or any human) am not my disability, anybody may have deep struggles.
Many have extremely difficult struggles, appalling and daunting struggles in simply surviving another day, any and all of which are not recognized, but swept under that metaphorical rug when I(or any human) am told my struggles are actually a gift.

If I (or any human) am less able to do certain tasks, think certain ways, behave according to certain standards, do I have less value than those who have the gift of having those abilities?

Does an individual who has no special skills or lacks ability to use certain parts of the brain and/or body have less value? I think not.

Autistic inflexibility

Why the rigidity of thinking? I cling to the rules and ideas of which concepts and principles I think I have grasped as a drowning person would cling to a life preserver.

I am afraid to give up those ideas because I have no obvious or evident, or known alternatives and I would be lost without my guidelines in place as a blind person would be lost if dropped into the middle of a forest.

Rules provided guideposts which gave me (I thought) the ability to see how to navigate the complex and scary processes of my world which made little sense without them.

I am coming to realize how my autistic inflexibility has influenced all my life experiences and my perceptions, etc.

I wrote in this blog a while back regarding a phrase in the Temple/ Barron book on Autism.

There was a comment about a child needing explanations about the nature of mistakes, forgiveness, learning, and recognizing that all mistakes are not mortal, that errors are made all the time and adjustments can be performed, that the world will go on with very little harm most of the time being done on a permanent basis. I did not know or understand this until I was in my 30’s!
I want to address this because I made assumptions in growing up which were simply not true, learned the things I thought were the ‘rules’ without realizing that these change with every situation and that our responses to any situation can be varied.
I have always told people that I need explanations for many things which might seem obvious to others. This is something that dawned on me around age 30, although I never suspected I had different neurological processing and blamed it on being stupid about things, which was the answer others had provided for me all my life. Now I know it was / is the autism.

Finding out about Autism has brought new understanding. Things I had to learn by being taught/getting therapy that were probably obvious to others from a much younger age:

1 Mistakes are common and forgivable. You are not bad if you make a mistake.

2 Rules of every day life change in different situations. A rule is not always a rule in every situation.

3 There are many ways to respond to people’s requests of you. You have a choice of many options.

4 You are not responsible for making other people like you. People can dislike you and that is OK, it does not mean that you are less worthy or less human, or of less value than they are.

5 If people are not your friends, they are not necessarily your enemies. They are mostly neutral. That is OK too.

6 You do not have to try to make people like you. You do not have to be socially successful, look a certain way in dress, demeanor, bodily appearance, or have to have a certain job or have a certain way of life to be happy or content.

7 It is OK to say no, you do not have to have the good will of anybody to interact with them.

Some of those points are inter- related, all of them stand alone, all of them were quite difficult for me to grasp because of my rigid autistic brain and the lack of outside guidance to give insights. It was my counselor who began to explain these things to me 37 years ago. I got counseling at age 30 to learn things that “average” or neurotypical children probably have learned by age 10 to 12.
I had no idea of my autism back then, but was able to learn these things with the therapist’s explanations, and it changed my life.

If you suspect you might be autistic, or believe you might need explanations where you struggle in your life, please do not hesitate to find a good counselor to help you with ‘every day’ operations.
My understanding of my world and the ways I could act and interact with others in making healthier choices and choosing healthier ways to live has improved and life has got so much better with practice.

I still have many struggles for understanding, still have struggles to be self assertive instead of appeasing and submissive as a first choice (that was the behavior pattern I had been taught as a child and young adult).

Going to counseling with a good therapist who was able to teach me healthier ways of communication and decision making was the single most important and helpful thing I ever did for myself.
If you struggle with deep and constant emotional pain and or feel rage and loads of frustration, there might be new ways to do things that could help ease that burden. Please reach out and ask somebody to help you. You don’t have to do this alone!

Many of us are stuck in ruts of learned behavior which can be tying us to unhealthy lives.

Learning new ways to respond, learning about choices we didn’t know or understand can be life changing.

For me it was truly the difference between life and death. I would have been dead in a gutter somewhere years ago if I had not got counseling and better understanding of my choices and my ideas of the rules of life in general.

Check it out!