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. Β 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. πŸ™‚ 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. πŸ™‚

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Miriam

I believe that my father, sister and nephew all are affected by Asperger’s Syndrome. My nephew (my sister’s child) was diagnosed with Asperger’s about a year ago. I learned about Asperger’s Syndrome several years ago while researching a paper on autism for a school project. When I saw an article about Asperger’s, I couldn’t believe it – I thought, “Oh my God, it’s my family!”

My father was a professor of logic, now retired. He has always been extremely socially inept and unable to read “cues.” He relies on my mother to tell him how to dress, act, take care of himself. He has numerous peculiar “special interests,” including collecting flags (not the actual flags, but pictures of flags and facts about them), national anthems and military uniforms (again, not the uniforms themselves, but pictures and facts). He is extremely pedantic and boring and tends to “communicate” (if you want to call it that) by following another person around and lecturing on and on, without letting the other person really participate in the conversation, seemingly not able to comprehend that the other person has no interest in the topic. He is a kind man – not a mean bone in his body – but he’s totally oblivious to the needs of others. I could go on, and I’d be happy to provide more information if necessary, but I think that’s probably sufficient.

My sister is, I believe, affected even more profoundly by AS. She’s two years older than I am, and was actually diagnosed as “mildly autistic” when she was about 5 years old. Her school had sent her for an evaluation because her behavior was odd. However, she was never told about the diagnosis (which is my mother’s style), although I was told about it as an adult. My sister, though she’s very bright, seems to have no insight whatsoever into the fact that her mannerisms and perspective are unusual or uncomfortable to others. Her son received a diagnosis of AS and she doesn’t seem to be able to put this fact together with her own behavior. It is very hard for me to see her struggle ineffectively with her son’s issues. She is so sensitive that I don’t feel that I can bring up her own diagnosis with her.

I guess that I’m mostly looking for some support and understanding about growing up in a household where AS traits were not only considered “normal,” but often actually desirable. The family lore was that “this is how really smart people act,” so that not exhibiting AS traits meant that I wasn’t as “smart” as they were. (Yes, my father and sister did test higher on IQ tests, SATs, etc. than I did – and my sister does not let me forget it to this day.) On one hand, I began to realize (especially witnessing the teasing of my sister at school) that they were different, but on the other hand, I felt that I was inferior to them. Also, my mother, though not affected with AS, is quite simplistic when it comes to understanding emotional issues of any kind. I always felt that it was not ok to have feelings, let alone express them or get my emotional needs met. To this day, I feel that it’s my job to “walk on eggshells” around my family – to figure out what’s ok to talk about, not get them upset, etc. I do not look to them for support – I believe that they all try their best, but just can’t give it. I’d like to talk to others who may have faced a similar family dynamic growing up. I am struggling with recurrent depressions as an adult, find that I have a very hard time acknowledging my own feelings and needs, and would like to hear if others in my situation face similar issues.