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higgie
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02 Jan 2011, 11:12 pm

I would like to recommend that if you suspect you have Asperger's, you should verify it medically, and then tell your family. I found out I have AS last June. Both my parents are gone, and I wish so much I'd found out about this when they were still alive. It would've been so important for them to understand what was wrong with me all my life.

I was born in 1950, and all my life, my whole family, and the kids in the neighborhood, and at school, called me rude, standoffish, aloof, unfriendly, a ret*d idiot, a creep, demented, clumsy, boring, and stupid. I couldn't stand being touched, and because of that I was called hostile, paranoid, rude, and on one occasion, a "b***h." My teachers complained to my mother that I wasn't friendly with the other children. Mom severely reprimanded me for this but did nothing about it. My voice sounded dull and monotonous because I was so often depressed, and my mother told me she didn't want me to answer the phone anymore, because my aunts and uncles had been complaining to her about how "dopey" I sounded. My family and the kids at school often did mocking imitations of my voice. I was often yelled at and scolded because of my inability to look people in the eye and say hello. "You're very, very rude all the time," my mother said.

When I was in high school, the nuns called my parents to the office and said they suspected I was suicidal because I seemed so often depressed, and they were worried that I wandered around by myself and never socialized with the other girls. They said if Mom and Dad didn't take me to a psychologist, I would not be allowed back into the school. When Mom told me that, I thought I was one of the worst people on earth. "You're not fit to be among us," seemed to be the nuns' message. I thought they were sending me to a shrink just to humiliate and punish me. Mom did take me to someone, and I had a lot of tests. Then the doctor spoke to Mom alone while I waited outside. When we got home Mom started crying and said the doctor had criticized the way Mom was raising me. Mom never could stand being criticized, and she cried all afternoon and then took a nap, and later said she never wanted to talk about it again. So I never found out what the doctor said. I was allowed back in school, feeling deeply scarred and more ashamed of myself than ever.

When I got to college I was such a good student that one of my teachers recommended I apply for a Fullbright scholarship. I told Mom when I got home and she seemed pleased. But a couple of days later I walked into the kitchen and she was on the phone with her back to me. She said to whoever was on the line, "Clare applied for a Fullbright but she's not going to win it. She hasn't a hope. One thing they want is projection of personality, so we might as well forget it!"

Mom told me I wasn't interested in people, only in myself. She made me feel selfish and anti-social. Dad said nothing about any of this; he just ignored me my whole life (because, I now realize, he had AS and wasn't interested in his own children). But everyone mellowed out by the time we all reached middle age, and everyone finally left me alone and stopped insulting me.

My father died in 1997 and my mother in 2002. I was so busy for the next few years that I didn't think much about all those issues, but lately I began wondering about them, and then came my discovery of AS. I heard someone mention AS on TV and I researched it, and discovered that both my father and I had all the symptoms. I wanted to know for sure, so I went to a clinic and had six hours of tests, then a meeting with a psychiatrist, and the diagnosis was indeed AS.

I told my older brother by email (one of his own sons had had some of the symptoms when he was little), and he just said, "I'm glad you found a diagnosis you trust." That's all he said. Whoopee. But my sister said it broke her heart to think of what I went through all those years, without knowing why. I tried to get in touch with a psychologist that I used to see for years, and who had retired. I wanted to tell her the news. It amazed me that I saw her for nearly twenty years and she never suspected I had AS. I found out she had died three years ago.

The people that I most wanted to tell were all gone -- my parents and my psychologist. It would have been especially important for my parents to know that I was not the "difficult child" they thought I was, that I was born with a disability, that I couldn't help it, that Dad should have gotten himself tested also. It is too late. This is why I recommend telling your family ASAP if you have AS, even if you're scared to. They may surprise you by being more understanding than you expect. Maybe you also need to make sure they know that it's not your fault, if your family is anything like mine was.

All my life I had been made to feel that everything wrong with me was my fault. It never, never was.



wavefreak58
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02 Jan 2011, 11:25 pm

While I am sorry for your pain, whether one should tell their family of a AS diagnosis is a highly individual decision. It would do me no good to tell my parents. They may not even believe me. I think each of us needs to carefully consider whom we tell of our DX. While we should not let unwarranted fear hold us back, blindly plunging forward into revealing Asperger's can have unintended consequences. It should be done or avoided only after careful reflection and deliberate thought.


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higgie
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02 Jan 2011, 11:38 pm

You definitely have a point. I think if I had suggested to my father that he get tested for AS, he would have heatedly denied it and refused to go. I also don't know if my mother could have handled knowing that she married an autistic man and had an autistic child.

My older brother's reaction, since it came by email, is hard to know. He never was very demonstrative and may have written that one sentence just to say something, and he may have deeper feelings about it than he can express. I'm grateful for my sister's response. It was very caring and understanding.

It's up to each individual person, as you say.



quesonrias
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03 Jan 2011, 1:58 am

I think I could tell my mother without a diagnosis, but she would be a bit skeptical until I gave her enough evidence. However, my father, whether I have a diagnosis or not, he will never accept all that mess about "feelings" and psychological/learning challenges. He thinks it's all in your head and it's a big excuse to just not do what you are supposed to do, which is suck it all up and get on with it (which he doesn't do well himself, btw)


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Verdandi
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03 Jan 2011, 4:46 am

I already talked to my mother about ADHD this year. I'm not sure I'm ready to go through it all again with AS.

Then again, she might be understanding. I know she's explained my sense of humor and tone of voice to my nieces when they thought I was mad at and/or hated them after I'd made a couple of jokes.

I will tell her, though. I'm not sure when. I'm not sure about the rest of my family. I haven't told most about ADHD for that matter.



Aspieallien
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03 Jan 2011, 6:01 am

I understand exactly how it feels to be punished throughout life when being truly blamless. I was allways accused of being rude, unfriendly, clumsy, useless at sport, a man of few words and so on. All this pain, minus the blame. I was never consciously or deliberately choosing to have these traits and behaviours, but I was given the criticism, and was bullied by other kids. And those who critisised me did so consciously with ignorance, clearly having no clue what they were talking about.

I have tried to explain AS to my parents but have been met with more hurt. They refuse to acknowledge or accept my AS. So it feels like a real slap in the face to me, as this explains clearly why I was and am the way I am. So I have given up on the idea of trying to explain my AS to them anymore. I forgive them though and I'm moving on.


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hesting
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04 Jan 2011, 3:56 am

I think it depends on your and your parents' relationship whether it's a good idea telling them about it.
If they have never been thinking good of you, they might just think "oh, it's just a new spleen of him/her" and also say so. It would not have mattered how good or relieved you feel with the new knowledge.



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04 Jan 2011, 4:21 am

Wow, higgie, your post really moved me and I can relate to some of it. I'm very sorry you had to grow up like that.

I grew up with an abusive father and neglectful but affectionate mother and I struggled a lot with the outcome. After finding out, I wrote my mother and explained what AS is and how it affected me both as a child and an adult. She never answered directly, but her reaction face to face was along the lines "you cannot blame us for the "mistakes" we made since there was something wrong with you from the start". I don't have any contact with my father and no intention of telling him.

I've read a lot of stories around here about finding out about AS and the way the family reacted to it. Some people get in denial, others start seeing their children as defective and treat them worse. Others love their kids enough to want to help and understand them better.

So it's true you can never know. But I'm happy you shared your story and appreciate your good intentions. I'm also glad you realised, even later in life, that it wasn't your fault - guilt can be one of the most devastating human emotions.


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Rocky
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04 Jan 2011, 4:37 am

@higgie- Welcome to Wrong Planet!

Anyone planning to disclose to their family should remember that most people are not that familiar with Asperger's. They might have some vague notion with misconceptions. You will have to fill them in during the conversation, at least to some extent. Their initial responses will be limited by their lack of knowledge of the subject. For most people, being told about a family member having AS will be a unique experience. They will be unsure how to react, especially if you do not make it clear how you feel about AS.


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higgie
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05 Jan 2011, 6:27 pm

Thank you very much for your kind and supportive words. I'm lucky my sister reacted so well, and I'm very sorry about your mother's reaction. If my mother had been alive when I discovered my AS, she probably would've reacted the same way. My father was also very abusive because we were living in Mom's mother's house and Dad hated Nana, and he took it out on us kids. Mom refused to move because she "couldn't leave" her mother, so we stayed in that house till Nana died. I always had a phobia about being touched and later Mom blamed herself for it. She thought I felt that way because of Dad's physical abuse, and said if we'd only moved away from Nana, Dad wouldn't have hurt us kids and I wouldn't have ended up that way. If I could've told her it was an AS symptom, I think she also would've said something like, "Well there was something wrong with you from the start, so now I don't have to blame myself, and don't you blame me or your father."

My older brother has three grown children, and his eldest son, who was always mentally gifted, had some of the symptoms when he was little (of course I realize that only in retrospect). But he outgrew them. He's 36 now and hasn't married or had kids yet, but if he does, and any of his children begin showing AS symptoms, the family will be able to recognize them, and the child can get the right treatment. This is why I'm glad I told my older brother. I want to make sure no other child in our family goes through what I went through.

It's been said that "The truth will set you free." This is certainly true for those of us who spent a lifetime feeling inferior because of the way we were, and then learned it was never our fault. Whatever anyone else's reaction may be, we know the truth, and we are better for knowing it.



Sallamandrina wrote:
Wow, higgie, your post really moved me and I can relate to some of it. I'm very sorry you had to grow up like that.

I grew up with an abusive father and neglectful but affectionate mother and I struggled a lot with the outcome. After finding out, I wrote my mother and explained what AS is and how it affected me both as a child and an adult. She never answered directly, but her reaction face to face was along the lines "you cannot blame us for the "mistakes" we made since there was something wrong with you from the start". I don't have any contact with my father and no intention of telling him.

I've read a lot of stories around here about finding out about AS and the way the family reacted to it. Some people get in denial, others start seeing their children as defective and treat them worse. Others love their kids enough to want to help and understand them better.

So it's true you can never know. But I'm happy you shared your story and appreciate your good intentions. I'm also glad you realised, even later in life, that it wasn't your fault - guilt can be one of the most devastating human emotions.



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06 Jan 2011, 10:34 pm

Except for your Grandmother, your family situation is very similar to mine.

I've also seen an older post of yours about the how you thought about what your life could have been if you were diagnosed earlier and strongly empathised with it. The first year after finding out was very difficult for me. After feeling relief for finally understanding so many things, I ended up re-evaluating my whole life through this new perspective. I remembered things best forgotten, I could see how easy it would have been to avoid situations that ended up hurting all involved. My parents admitted of knowing there was something "off" since I was a baby and they were also highly educated people who had the capacity/possibility to understand more then others. But since I was quiet and intelligent they found it easier to keep forcing me into what they wanted and ignore the effects this had on me. That almost broke me and left me with some serious long term problems.

It was a tough process but I don't regret having to face it. You have to keep in mind that AS became recognised and used as a diagnosis only in the '90 so there was no chance for us to get one. Some older people here were just diagnosed with autism or something else. Maybe it was better that my parents didn't pursue this - I could have been diagnosed with something else and ended up with treatment and medication that could have made things even worse - you never know.

I found my peace now and my life is good - I feel I'm more in control and able to make decisions and it's easier to chose where I want to concentrate my efforts. I've also learned to let the guilt go and stand up to others when necessary.

So I'm glad that this new found truth helped you too and wish you the best, peace of mind and acceptance have amazing healing power.


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