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.

Helena’s story

First my son was diagnosed with AS.  I noticed that his father had many
similar traits and had my suspicions that he also is AS confirmed by people
who work with my son.  Then I realized my brother is AS.  His behavior
toward me is like a 2-yr-old.  Can’t see that I have feelings too.  (He’s
also been controlling and, lately, really cruel.)  I’ve always known that my
mother and brother were very similar to each other and very different from
me.  I began to suspect my mom had AS as I looked at some of her blood
relatives (rigid, socially “off”, very smart in clear-cut, logical fields —
accounting, law).  My mother was puzzled that I had different feelings and
interests from her.  I SHOULD be interested in… I SHOULD do…. etc.  My
mother assumed that I knew things – both how to do as well as what to do,
without being taught or having an explanation.  She couldn’t give me
guidance or advice that was suitable to MY personality.  When we had a
difference of opinion – “I will not do X”, it was as if I never said
anything; she just bulldozed on as if I agreed.  I got around her by
avoiding issues, being vague, and just not telling her what I was doing.  I
never spoke with her about what kind of work I was doing or wanted to do.
It wasn’t what she wanted to do, therefore I shouldn’t be doing it.  She was
judgmental – I don’t remember her ever telling me I did something well; she
said really hurtful things to me that I don’t think parents should say to
their kids.   She also was very controlling and anxious.  She did not like
to be touched – she’d get stiff with hugs.  I’m sure she was AS.  It would
explain a lot.  Like why I married a man with AS and felt, when we were
having problems, that I was the one that needed to be fixed.  (Now I know
better).

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Stella’s story

Some old friends of mine, who are some of the few people in the world who have been willing to socialize with my mother, recently gave me their take on her abnormalities and suggested that I see a psychiatrist about her. My mother’s behavior had never fit any psychological profile that I had encountered but I recently met with a psychiatrist and a genetic counsellor and they offered the Asperger diagnosis. Since reading about it I am convinced that their diagnosis is correct…. I am feeling very surprised that there seems to be a neurological profile for behavior that I thought was unique to my mother.  I understand AS is much more common in males than in females but my mother’s parents were closely related – they shared the same grandfather, whose son was institutionalized for antisocial behavior.  Therefore, I think that my mother inherited AS autism genes from both her parents.

 

Our family was not thriving on any level.  Although my mother was not competent at the basics of maintaining a household, my father thought that it was women’s work and did not contribute himself.  The upside is that because my mother (and father) could not cope with any of the responsibilities of having a house, we lived in a small rented apartment surrounded by elderly people and a few families who seemed to decide early on that they were going to intervene to see that I was okay.  Therefore, I divided my time since the age of three between a long-term baby-sitter and many neighbors who invited me for meals, helped when I was injured, provided a safe place to play and tried to give me a leg up in some ways.  My parents “home” had very little in it – no love, bizarre meals (usually just one ingredient, e.g. all eggs, all beans, all dairy, etc), few furniture (some black chairs and sofa that would not show the dirt), no TV or radios.  My mother never learned to drive and my parents had no interest in celebrating my birthday and did not want to celebrate the big holidays.   Another difficulty was that my mother favored my brother who is older and more resembles her.  Both she and my father turned a blind eye to his bullying and abuse. It seems that my father married my mother and stayed with her because of her extreme frugality, which he shared and appreciated.

Some of my mother’s obsessions changed frequently and included medieval coinage, arctic wildflowers, watching track and field.  Her collections have also changed and have included dozens of jars of fermented fruit, shoes, nail scissors, laundry detergent and bleach.  Her current interest is in accumulating dried plums. For the last 30+ years she has worked as a volunteer for the  [Political Organisation]  as an advocate for “Juvenile Justice,” mainly advocating funding for programs for youth who have committed crimes. In her comments about this work, has revealed a sense of camaraderie with young homicides who are probably sociopaths.  Her positions are never paid and she seems to experience a certain amount of conflict with the other volunteers.  Socially, she is extremely pedantic and most new acquaintances excuse themselves after a few minutes.

I have felt very let down in the past because others had so little understanding of the harm this type of terrible parenting can inflict.  I have never met any woman who reminds me of my mother and I have never met anyone who has described experiencing the type of bad parenting that I received from my mother. I have noticed that the number of resources devoted to helping parents with AS traits far outnumbers those for children with AS parents and yet children of AS parents have the most experience with how these traits play out over a lifetime and have probably suffered a great deal.   I am curious to learn more about others’ experience and see if they seem similar to my own.

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.