River’s story

Note: Identifying information has been altered to protect the privacy of the individuals mentioned here.

I’m so glad I finally found your site. I know you must hear this over and over, but the relief and sense of identification — and justification — that I got just from reading what others have said about being raised by an AS parent is indescribable. My father, before he retired, was a paleontologist.  He had a PhD in Palaeontology, was a professor in his field and also a scientist for the armed forces.

What kinds of behaviours does your parent show that make you think they have AS?

I don’t know where to begin, but I can list a number of examples… He is quite egocentric, self-centered and most often lost in his own world. (Now that he is retired and we kids are out of the house, this is much easier for him to do.) Once as a child I had been badly injured and, since we lived in a rural area, needed to be driven to the hospital. The injury was so severe I was in real danger of bleeding to death. My mother was in the car with me, trying to put pressure on the wound. Meanwhile, we were all waiting on my father, who had been dressed but shirtless at the time I got hurt. I was sitting in the back seat of the car bleeding, and he was looking for a shirt to put on so he wouldn’t have to go to the hospital without one. Paradoxically, he felt very guilty about the injury later on, because he had unintentionally been part of the cause of it. He apologized profusely, over and over again, and even took me out for ice cream (a real rarity). No matter how much I tried to reassure him, it never seemed to penetrate — I never once blamed him, because I understood from the moment it happened that it was an accident. I grasped this intuitively at seven years old, but he, in his mid-thirties at the time, just couldn’t get it, and he really beat himself up about it to the point that I wound up being the adult in the situation and comforting him. I think that since this was a concrete, physical wound, he was able to see it and understand it in a way he could never see any of the other damage he caused, a lot of it more severe — in an emotional and psychological way. He is “mindblind.” He has no real “theory of mind;” He has no idea how his behavior affects or did affect other people, especially children. I’m not sure he completely understands that children, or anyone else for that matter, are people, or what it really means for someone to be a person. I know he doesn’t understand the difference between children and adults, and he seems to have little to no understanding of the emotional needs of others or the correct responses to those needs. He often seems to see my mother as an extension of himself with no independent thought or feeling of her own. That, however, has changed a bit in recent years as my mother has begun to assert just a bit more independence. He exhibits distinctive “weak central coherence” and “poor cognitive shifting,” and put together, they can create a real problem. His attention is mostly hyper-focused on one particular aspect of a situation, to the extent that he doesn’t realize what else is going on around him and cannot react quickly or appropriately to emergencies. However, I am rather proud of his intellectual achievements. His intense, prolonged concentration is legendary. When he was writing his dissertation, my mother tells me, he would write for 20-24 hours at a time without breaks to eat, sleep, or even go to the bathroom. He is exceptionally intelligent with an IQ well into the genius range, and he was a quite gifted scientist. We took many hikes, but they were more like forced marches. On trips, he had an absolute insistence on following a pre-planned route and stopping only at pre-planned destinations. He mapped every route and stop out in advance, and he could not make allowances for the kinds of things children may need on trips, such as unplanned bathroom stops. Everything had to be organized and follow the plan he had structured, or he would degenerate into a tantrum. We could not stop just because something along the way looked interesting, either — unless it was an intriguing paleontological phenomenon, that is. He carried tools for extracting fossils with him everywhere he went, just in case something caught his attention. He cannot read facial expressions very well. When I was a kid, he was totally unable to tell how I was feeling — again, though, he very rarely seemed to care what I was feeling, and he didn’t express much affection. There’s a sense in which I’m not sure he understood that I was feeling or thinking anything at all. He cannot differentiate socially between adults and children and thus has no idea what is appropriate and what is not, sexually or otherwise. He was often quite sexually inappropriate with me, and with my sister as well. Actually, he has no idea what appropriate behavior is in general and frequently made embarrassing scenes in restaurants and other public places when I was growing up. He could not, as the article on your website pointed out, tell whether or not my behavior was intentional, and he made no allowances for children “being children,” since he had no idea what that meant. He expected adult behavior and complete rationality from us at all times, and we were much too young to provide it. Just about every day I spent with him in the house involved at least one violent interrogation over something I had done or failed to do. He would ask me, over and over again, why I had done whatever the offense was — like forgetting to do something he had told me to do when he’d told me to do it, or accidentally ruining a possession. Then he would rant, scream, throw things, and hit when he didn’t get rational answers that would satisfy him but were far beyond our ability to provide. Many times I wasn’t even certain what I had done to set him off, but he would mock me viciously if I asked what I had done. Clearly he thought I knew exactly what I had done and thought that I had done it, whatever it was, intentionally, just to upset him. I guess that goes back to the point about egocentricity. Sometimes there were no words exchanged at all and he would just suddenly punch or slap me from out of the clear blue and then walk away, leaving me completely confused about what had just happened and why. Along the same lines, he has always been unable to stand loud, chaotic environments for very long. He often just exploded when the noise or activity of childhood around him became too much for him. Seriously poor impulse control and a violent temper dominated him, and all of us. He has the usual obsessions, collections, etc.. He collects stamps, for example, but not in the “usual” way. Though he knows everything about stamps and knows what is good and what isn’t good collection material, he obsesses on certain particular stamps, often essentially worthless ones, and amasses them (i.e. one particular stamp) by the hundreds. He knows exactly how many he has of each one, where they are, how they’re arranged, etc.. He has had many other odd collections or obsessions like this over the years. If anyone touches anything of “his”, he becomes enraged. My mother is not allowed to clean his “room,” i.e. his “office” at home, at all. “Endless monologues”: He would lecture my mother for hours at a time on palaeontology and he would do it as if he were talking to a fellow palaeontologist. He had no clue that she didn’t understand what he was saying; she had to just humor him. We all had to be careful in doing so, however, because he would get horribly upset if anyone suggested they didn’t want to hear him talk. He would also get very upset if he asked a question about any of his obsessions, particularly fossils, that I couldn’t answer. Another of his obsessions at one time was reading the entire encyclopedia from A to Z (in alphabetical order, of course), which he did. We were often “held captive” by his lectures on any and everything. I discovered quickly not to ask him for help with my homework, because that would inevitably lead to a one-sided lecture that would usually last well over an hour, during which time I was not permitted to leave to finish my homework or go to bed. He tells the same stories over and over and over as if they were new each time and often forgetting more and more prominently with each retelling that we were present ourselves when the event took place. He has little ability to have a conversation. He cannot comprehend that a conversation is two-way, involving both parties. He talks, sometimes even asking questions, but he then doesn’t listen and interrupts the other person in the middle of a sentence. He is prone to imaginative paranoia. For example, he spent the night at a hotel room once with a colleague and was convinced that the blinking red light from the smoke detector was actually a camera watching him. He also sat me down when I was about nine and told me pointedly never to trust the government. He exhibits the physical symptoms of autism such as repetitive rhythmic movements and systematic muscle twitching. For example, he often rocks in his chair, he has a very strange, rhythmic walk that swings from side to side, he swings his head unceasingly from side to side when he “lectures,” he rubs his fingers together in the same repetitive pattern, he very embarrassingly (for the others in the room, at least) “plays with himself” (for lack of a better word) when he’s talking, and so on. He seems to be unaware he’s doing any of it. I could go on, but I think this is more than sufficient. 🙂 I apologize for writing so much — it’s just such a relief!

How has the AS person affected you and your family?

Substantially. My NT mother has been the until-recently unrecognized caregiver for someone with special needs. My sister, also NT, has coped with our tumultuous childhood in her own way, and I cannot speak for her. I am in therapy. Now that I understand that he is AS, it puts together many of the pieces that made little sense before, and that helps. However, I still suffer from complex PTSD as a result of my childhood and essentially identify as someone who was emotionally, physically, and sexually abused. The difference now is that I understand how and why it happened to a greater degree. What do you hope will be the benefit to you of joining our support group? Hopefully I will get validation, coping strategies, and just a place to correspond with others who have been through it all too and understand. I will probably be pretty quiet at first, but after a bit I will get more comfortable. I would also, of course, like to help others if I can. 🙂

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The Military Enthusiast

I am one of three (neurotypical) adult children raised by an
autistic parent. Although he has not been formally diagnosed, there is
strong evidence to support that my father is mildly autistic. He is an
isolated individual who rarely displays any type of outward affection. A car
ride to the doctor’s office for a deep cut or a broken arm would be the
extent of his compassion towards us. Since my mother worked nights, dividing
her time between her three children was difficult. In desperation to be
noticed, we would often resort to getting negative attention from her as
well as our father. It was the only attention my father would give us and my
mother couldn’t ignore.

           In addition to my father’s aversion to social situations, he
exhibits external habits associated with autism. He is an interminable
pacer. It is extremely rare to see him at the dinner table or even seated
while watching television. While he paces, he rubs and claps his hands
together in front of his face while uttering low grunts. He is almost
completely unaware of this habit and will do this under the scrutinizing eye
of the general public. The intensity of his current mood seems to trigger
the frequency of his rubbing and clapping. Severe anger causes him to shout
and his rubbing and clapping transforms into rapidly flailing arms above his
head, not stopping until well after the shouting ceases.

His unusual obsessions stretch farther than pacing. He is a reclusive
encyclopedia of knowledge for World War II facts. He can watch the same
documentary on General Erwin Rommel’s battle strategies against British
occupied South Africa ad nauseam. Only on a few occasions would he share
some of his information. His infrequent war speeches were spotted with dry
coughs (no medical correlation) then he would trail off and pace in another
room.

             My father also has a habit that is uncharacteristic of
autistics. He seems to have somewhat of an imagination. He enjoys playing
with toys. He used to set up my younger brother’s figurines and have pretend
battles for hours at a time. While playing, he would often pause to clap and
rub his hands together. He would never play toys with us though. This was
one of the many activities he preferred to do alone.

            My mother never made excuses or attempted to “cover up” my
father’s eccentricities. She would apologize to us for not having a father
that was more “involved” in our lives. Divorce wasn’t an option because of
their financial situation so we were all forced to live in a tense
household. She knew my father had problems and pleaded with him to get help
or medication, but he refused. He stubbornly concluded that nothing was
wrong with him and he was always right.

I was always embarrassed to have friends and family visit us. Holiday
dinners consisted of everyone trying not to stare as my father inhaled his
food then ran off to the basement to pace and clap for the duration of the
day. In addition to this, my father also thought that demonstrating
infantile behavior was funny. Releasing bodily functions in front of others,
or especially strangers, was hysterical and also the pinnacle of my father’s
socialization. To contrast the examples my father would set, my mother
exhaustingly attempted to teach us that dad’s behavior is not normal and we
shouldn’t model after him.

I spent years researching publications on autistic parents and have hit
continual dead ends. Of my many e-mails to organizations, the Autism Help
Line sent me a link to the ASpar website which was a relief to find. I was
fully aware that high functioning autistics grow up and have families, but
couldn’t find any publications from people raised by them.

In becoming a full member of ASpar, I hope to find available resources from
people who have gone through this as well as offer my experiences to aid
others. My siblings and I have always felt different and isolated in having
an unconventional father and it would be supportive to hear other
experiences similar to ours. I feel strongly that there should be a
heightened awareness of autistics becoming parents so that acceptance and
understanding can reach those children who have the difficulty of being
raised by autism.

An archtypical story

Lisa’s story

I believe my father has AS while my mother has aspects of AS as does my older sister.

We “discovered” AS in the family as a result of all the behavioral problems my nephew was having in primary school, and after a great deal of confusion and testing found that he was diagnosed with AS. In observing my nephew’s traits, my younger sister and I realized that there was a lot of AS in the family.

My father is a retired professor of [science subject] and my mother is a retired professor of [social science subject]. My father, apropos of nothing, will launch into long discourses at the dinner table about the history of his science, detailing scientists’ names and dates, which the rest of the family must “sit through” in its entirety or he will either fly into a rage or sulk.

My mother acts as if this is perfectly normal. However, she also will recite in excruciating detail, terrible stories about tragedies that happened to people she has known in her life or go into “professor mode” about some topic. If we then change the subject, my father will just “zone out” or go into a funk until we talk about something that interests him.

I should mention that my parents are both immigrants who are currently 80–for 40 years, I thought their behavior was due to their immigrant heritage, but reading your website (at which I found myself “laughing out loud” in recognition) has convinced me that it really has been AS all these years.

My parents are completely isolated, they have no friends and rarely ever talk about their families in their homeland. For instance, about 8 years ago my mother mentioned that her mother had turned 99. I did not even know that the woman was still alive! However, three months later, I was informed that my grandmother died!!.

My parents have always had very rigid routines for eating, sleeping, going to the store, etc.

They have a tendency in public to rub people the wrong way. They pick fights with waiters about where to sit in a restaurant, they argue with salespeople over tiny discrepancies, and they can be physically pushy.

At the same time, reality and truth are relative concepts–my parents openly lie about the most trivial things and for years I thought I must have a “bad memory” because I couldn’t seem to keep straight what the current “reality” was. It was not until I was dating my husband and he was astonished by one of their minor lies that I realized that they had routinely lied all my life!

In arguments, they must always be right–if I began by talking about some misunderstanding or slight by them, they would immediately turn the argument against me saying that I was being “disrespectful” and should apologise for even bringing anything up. Then they would launch into all the “bad behavior” I had ever done over the last ten years (much of it “made up” or “twisted”) to prove that they deserved an apology instead of me. But they never apologise for anything if they can help it.

My parents never hugged us and barely ever touched us as we were growing up and they rarely played with us–my father’s idea of playing with me was to give me addition and subtraction problems to do (at age 5!)!

How has this affected my family? I came across your site after having had another huge fight with my parents (who said some really prejudiced things about people from my husbands ethnic background in front of my husband) during a dinner.

Almost all the holidays, birthdays, and other celebratory events in my family have been marred in one way or another by my parents’ bad behavior. They picked fights with all of us right before our graduations (they did not even go to some of my younger sister’s); birthdays were either treated matter-of-factly or devolved into fights; Holidays were opportunities to either “lecture” or rage or sulk. They refused to come to my bridal shower and the rehearsal dinner for my wedding (embarassing me in front of my soon-to-be in-laws) and threatened not to come to the wedding the week before it took place (to which I just said “fine”–they relented and came when they realized I meant it).

As a result, about 15 years ago, I stopped talking to them for about three years. After a lot of therapy, I have been able to cobble together a “relationship” of sorts with them–though I am not talking to them at the current time. … My older sister tries to spend as little time as possible with my parents when she comes and there have been numerous times when she has visited and left precipitously in a rage.

My sisters are not currently speaking to each other. So AS has had a very detrimental effect on my family.

What do I hope to get our of ASpar? The knowledge that there are other families like mine that have suffered (that I am not alone)–and the hope that other people can suggest ways of dealing with an ASpar parent. I do think that AS has a strong genetic component.

Neglected and living on the street

My brother and I lived on the street from an early age, though our mother had an apartment, there was no reason to go home. My mother never had food in the house, never cooked meals, never did laundry. She was unpredictable, and I was afraid of her screaming at me. We were dirty hungry little kids and she didn’t miss us when we stayed at a friends house for weeks/months at a time. One of the saddest memories I recall is being 7 or 8, no food in the house, and a stack of unused expired food stamps sitting on top of the empty refrigerator.

I really thought my mother didn’t care if we lived or died. She was/is happiest when talking about her special interests, and they are more important to her than any of our immediate problems/needs. My mother was/is consumed with babbling about literature, poetry, quantum-physics, druidism. She has no interest in anything I have to say, and always changes the subject back to one of the forementioned topics! This is very embarrassing when having dinner with strangers. Although she was college educated, she worked as a dishwasher and barely paid the rent. She threw childish temper tantrums and blamed us, her children, for her problems(?).

Felicity’s mother

My Mother has always been unemployed but since my Dad’s health is bad she now works full-time as a checkout operator. She had almost no personal hygiene skills and did not teach any to my brother and I, she had difficulty with basic cause and effect situations, she was fluent and self-taught in ASL and had a passion for almost nothing else but signing, she would leave me alone as a baby in my crib and go to neighbor’s houses to watch TV.  

Even in the face of severe abuse at the hand of my Father she would still not speak when he demanded she tell him why she did things that made no sense (hide the bills, spend all the money, never clean the house).  As a young adult I thought my Mom might have had a stroke or something.

My whole extended family is very disconnected. Just a week ago I went on a road trip to see everyone. It has been 20 years since I have seen or spoken with these people. When I told everyone about my 3 years old recent diagnosis of autism I was told for the first time that I have many autistic cousins and second cousins with it. Also, most of the kids in my family did not speak until a very late age and have poor social skills. People began to tell me stories about my Mother’s odd habits. I made the connection easily at that point and solved a 30 year mystery of severe neglect.

I can forgive my Mom. It is also funny that myself and some my cousins that do not have autism all have photographic memory and went into fields of human services. I became interested in autism in my early 20’s and am now a behavior specialist. The irony of having a daughter with autism after the fact was explained by discovering my Mother’s autism. It makes sense that I was led to this field. I was able to recognize years ago that I do what I do because my Mom never spoke that much even in the face of being abused for it. It is funny how things come full circle. Since I am so new on this journey I am hoping to find ways to get my Mother the help she needs without having to confront my Father with the fact that he severely abused a vulnerable person. He stopped over 15 years ago but is still selfish and controlling. He is the type of person that would kill himself if I confronted him. I think that if I find out he did know I don’t know what I would do. I think hearing other stories will help me define this new information.

Johanna’s mother

[Note:   This post comes from a writer with a non-English speaking background, and should be read in that context]

My mother worked as a cleaner (in office buildings).

She never showed any emotions. She could come home from work and say that she was in a good mood, that she was glad today. And as a child I saw that she was lying, she wasn’t glad at all, and I could never understand why she constantly lied about that.

I have never seen her happy or unhappy, never seen her laugh or cry. But now, as an adult with insight in Asperger Syndrome, I understand that perhaps she was glad when she said she was…

She was very rigid in her movements, and when she touched me she just grabbed me, almost violently. And I as a child I was afraid of her, especially when she wanted to touch me, or hug me, because she just
couldn’t hug at all. And her facial expression when she approached me was completely weird, which just made me more frightened.

She couldn’t keep a dialog, either she was silent and I or someone else talked, or she went on with long monologues.

She was completely naive, and had no way of telling whether someone was lying, or teasing her, or honest. She interpreted everything that people said literally.

I think she was of normal intelligence, but as a child I saw my mother as the dumbest dumb mother that anyone could possibly have. I see the tragedy in it all today, and I so much wished that she could show and
receive emotions, I would have wanted that so very much!

She dressed weird; with coats of thick cloth in weird colours. And she held her body and walked in a weird rigid way. I was ashamed of her, and when I was out with my friends and she happened to walk by and say hello to me I pretended not to hear her or know her. When I came home and she asked me why I didn’t say hello, if I didn’t see her, I was again ashamed. I was ashamed that I was ashamed, and had tons of guilt.

She always asked me how I felt. As a child I became annoyed over these questions everyday, and just yelled at her “Can’t you see that!”. Today I realize that she probably couldn’t. That she was
unable to see how I felt, that she was completely cut off from the feelings and emotions that the rest of us shared.

[My mother’s AS has affected me] profoundly! In almost all aspects, except: My dad kept the hold of our economy in the family, so I guess that this aspects was perhaps the only one that worked well. My mother had no sense of handling the household economy.

She was a complete loner, and sometimes accused us of saying things behind her back (a little paranoiac, but she is not suffering from paranoia).

I hope that I can contribute a little with my understanding of Asperger Syndrome in my mother, and of a two other people, men, that I have come to know later on in life that also has Asperger Syndrome. These two men have helped me a lot to understand how Asperger Syndrome affected my mother, and the reason why my mother acted as she did.

I also hope to share some understanding of these issues and problem with others. I understand today that my only brother also has a mild form of Asperger Syndrome, which meant that it was only me and my
father who were “normal”.

I have felt so completely alone with these feelings and insights that there is nothing else in the world I would want than to be able to share this with someone else who can understand it!

Jane – vignette

My childhood was very difficult … 

My mother was very distant when I was a child, no kisses or cuddles, we were never talked to. The house was untidy and full of her books. She spent all her free time in the corner of the room, table covered with dirty dishes, reading non-stop. I am just starting to explore this issue and wonder could it just be a deprived childhood herself, my grandmother was very distant, or could she have traits of aspergers.

In the last year my mother has moved house without telling me and sold the family home without my knowledge. I lived there for 22 years but never had the chance to visit it one last time. I find it difficult communicating with her now but she is the one acting hurt.