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. 🙂

Foster mother’s plea

Our foster daughter has been with us since she was 2 days old and now she is over 2 1/2 years.  Her father has been diagnosed with something in the Pervasive Development Disorder spectrum.  Some feel he has Asperger’s and some feel he has PDD – no other symptoms.  He has also been diagnosed as having narcissistic qualities.  Regardless, the focus has been his inability to bond, show emotion towards his daughter, his poor social skills, etc.  He has his daughter every weekend from Saturday morning until Sunday night.  He never misses a visit and does what he is told to do.  He is in his mid-thirties and can not keep a job and still lives at home with his mom. I believe that he loves his daughter in his own way.  However, he seems to think of his own needs rather than hers.  For her first year, he would call me to set up visitation but would never ask how she was.  He was told that this is something that he needs to do so now he does.  Up until about a month ago, he would never greet her or say, “good-bye” to her when he would see her.  He was told to do that so now he does.  However, it isn’t how a parent typically would greet their child after not seeing them all week.  There isn’t any great emotion, just a “good morning.”  He does what he is told to do but doesn’t seem to feel what he’s doing.

Currently, the foster care agency is trying to terminate his parental rights.  The basis is his inability to bond.  One issue that is going to come up is his poor social skills.  It is very difficult to understand what he is trying to communicate.  Also, his inability to understand how various things could affect his daughter worry me.  For example, he asked the court to move our foster daughter into another home because he changed his religion and wanted her to go to a foster family who had the same religion (no one specific, just any family who had the same religion so she would be going to complete strangers).  He and his family are happy with how our foster daughter is being raised by us and feels that she is in a good environment.  When he was asked how being moved from the family who has loved and raised her for the last 2 1/2 years would affect her, he had nothing to say.  He felt that she would adjust and that it wouldn’t be that big of a deal. 

I’m afraid that the judge may hear the testimony regarding his inability to communicate, his inability to show that he cares and his poor social skills and say, “so what.”  Our next court date is in Feb.  Do you or any of your members have anything to say in response to “so what?”  We love her so much and she deserves to be raised by someone who celebrates the wonderful little girl that she is.

The Constant Gardener

My mother is not employed, never was. Her “eccentric special interest” is gardening — her garden is worth 3 times what her house is worth, and she knows the genus of every plant known to mankind. She gardened instead of parenting me and my brother. (My father was alcoholic . . . which didn’t help the situation.) There are currently over 500 plants in her house. She hoards plants and everything else, including food. There is food in her freezer that has been there since I was in high school (I’m now 46 year old). She seemed to have no idea, when I was a child, that I was a separate person. If she had an interest, she couldn’t understand that I might not share it. If I had an interest she didn’t share, she’d either ignore it or insist that I didn’t have it at all (for example, she told me I couldn’t take dance lessons because SHE was not able to dance). She barely noticed I was alive, much less in trouble or in need of help. I had a severe episode of anorexia as a teenager, but she never noticed as my weight dropped to below 90 pounds. I was sick with this for five years, but she has no recollection of it. When the subject of eating disorders comes up, and the fact that I had one, she’s astonished. It’s as if, because it happened to me rather than to her, it didn’t happen at all. Her conversation is bizarre to say the least. Sometimes she holds forth on gardening, but more often, she engages in a sort of stream of consciousness soliloquy apropos of nothing. If others are holding a normal conversation, she will interject meaningless information into it. Sometimes her interjections are offensive, but if you tell her that you’re offended she has no idea what she might have said wrong. Often her interjections are hilarious or mystifying. The other day, in the middle of a conversation about local politics, she interrupted with: “Did you know that you could adopt a manatee? And give it a name?” She has no friends, other than members of her gardening clubs (she belongs to six) with whom she discusses only plants and gardening. I believe that her manner of relating would be offensive or confusing to anyone who doesn’t share this interest. When my family visits her (she lives several hours away), there is no food for us (other than the hoarded food, which actually ceased to be food many years ago). If she cooks, there is never enough–she doesn’t understand that when there are five people at the table, there needs to be more food than when it’s only her. I could go on and on. I have years of memories. I have always suspected that my mother was not normal. However, as a young child, how do you explain this to anyone else? How do you even know that you’re right? In my case, I did attempt to talk to my father about my mother’s differences but he would always tell me I was wrong or crazy. I guess he had a lot invested in keeping up a good front. But . . . I was astute enough to realize that my mother wasn’t showing me any love, which meant that something was wrong with someone, and if there was nothing wrong with my mother, that must mean that something was wrong with ME. I’m no psychologist, but I’d say it stands to reason that if someone grows up thinking that her mother is unable to show her any love because she’s too flawed to warrant maternal affection, that person is going to have some “issues”. And in fact I’ve struggled my whole life with the belief that I am too fundamentally flawed to deserve love or even a modicum of attention. I have had years of therapy and have finally learned to be comfortable with myself, but it has been a hard road. I am hopeful that someone in this group will relate to this. It would be so validating not to be alone.

Violent mathematician

My father has never had any friends that I know of. He has a PhD in math from a prestigious university. He tried a career in academia but left after he got into a fight with the chairman of the department over some small point about grading. Of course, the way my father describes it, the fate of the universe depended on his sticking to his point of view no matter what. But it always seemed to me kind of silly. Anyway, he then had a succession of different jobs, each one ending in a lawsuit when he got into fights with his bosses. My parents have always been self-righteous about these cases, but to the extent that I was able to understand what was going on, my father always seemed to be ethically in the wrong. For example, he left one job after being given a large sum of money and signing a “non-compete” agreement. He then immediately went to work for a competing company and sued his original employer, claiming he was forced to sign an unfair agreement!

He is clearly OCD and perseverent. As I child I used to watch in puzzlement as my father would come in and out of the kitchen four or five times an evening and run his hands over each of the stove dials, checking to make sure they were turned off. Ditto with the lock on the back door. He was incredibly rigid about certain things- for example, we had to line up our shoes exactly in an order specified by him in the cupboard

Some memorable topics of perseverence include: “Why Actors Are Not Artists,” “The Early Days of Computer Operating Systems,” and “The Fundamental Theorem Of Algebra.” Even though he could talk in great length about such things, in actual fact he made little sense. The meanings escaped him, even in technical subjects. He was just stringing together concepts by association, not by meaning. For many years I was so hungry for his attention that I would listen to him and try to bring something meaningful into the conversation. But his reaction to anything different from what he was saying was just to repeat himself in a louder tone of voice. He could get quite angry and even fly into a fit of rage over such things. If I didn’t want to listen to him he would become like a sulking child. Yet he never changed his behavior in the least.

He would lecture us constantly on such topics as Responsibility or The Way Things Are or How To Behave. It only took the slightest “infraction” to get him going. Again, he made no sense. He would rant and rave, literally foaming at the mouth. In this condition, a wrong word or look could result in him suddenly hitting a child. He had no clue how to relate to children (or to adults for that matter). Any show of normal human emotion or desire would often send him into a rage. He became desperate to stamp out the offender and the offense. He used to demand we give him reasons for what we wanted or were doing, but any appeal to our feelings would be answered with, “Feelings aren’t reasons. You could say you feel anything. How do I know if its real or not? You have to give me logical reasons for what you want.” Failure to comply would result in him getting louder and more aggressive and saying the same things over again. Of course we tried to comply and it has taken me 45 years to get to the point of unraveling that mental knot.

My father was also extremely paranoid, always thinking that people were out to screw him in one way or another. He did not know how to manage conflict, even minor ones, like a misunderstanding over a hotel reservation or a mistake in a restaurant bill (which he always obsessively checked). He would either become incredibly aggressive and threatening, or else if he could not intimidate the other person, he would withdraw and later obsess and perseverate endlessly over how wrongly he had been treated.

As a child, his touch was a source of major freak-out to me. It his hard to describe but it gave me the creeps whenever he touched me. In my mother’s case, her touch was often very mechanical, like I was a piece of luggage, not a child. I didn’t like her touch but it didn’t make me feel yucky. But my father’s touch had the effect of making me cringe. There was some kind of weird energy in it. I really don’t know how to describe it. I would go out of my way to avoid being touched by him and when I couldn’t avoid it, the feeling I had was as though I had just walked into a damp, cold morgue with dead bodies lying around. Honestly!

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!