Five Generations of Asperger Syndrome

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Hi, everybody. I'd like your opinion on something. I was diagnosed with AS in 2010. I'd known all my life that something was "wrong" with me, and always thought it was my fault, so the diagnosis was an amazing relief. Then I thought about my grandmother, my father, my older brother, and my brother's eldest son and granddaughter, all of whom had and have shown the symptoms quite strongly, and I felt it must run in the family. My parents had already passed away when I was diagnosed, but I did tell my brother and sister. My sister was very kind and understanding, but my brother (who lives in another state and whom I told by email), only replied, "I'm glad you found a diagnosis you trust and that there is treatment."

That was it. No interest, no desire to discuss it. Plus, when we were young my brother (I'll call him "Bill") used to torment me about the way I was, and after telling him I had AS I had naively expected him to apologize. I was incredibly hurt, and I told my sister. Sis said maybe Bill had AS, too, and that explained his apathy. How ironic -- that a person's AS would keep him from caring about someone else's AS, even when that someone else is his own sister, whom he hurt so much in the past. (I should also mention that Bill never showed any interest in me, or my sister and younger brother. When we were young and had dinner together he read a book through the whole meal and never even looked at us. The only time he paid us any attention was to make cutting, cruel remarks about our flaws.)

There was nothing I could do but just let it go. All this happened in 2010, and since then we've had several family gatherings with Bill and family. Neither Bill nor his wife talked about it. I kept wondering why. Were they in denial about their own song and granddaughter having AS? Or did they just not care? Please understand, I wasn't being nosy. But when something this significant affects five generations, I feel it should be talked about! And I wanted my brother to tell me that he realized I wasn't the "weirdo" he once thought I was. But I never bought it up, because I sensed they didn't want me to.

Now I've started seeing a new psychiatrist. (My previous one left the clinic.) I told this new doctor (I'll call him "Dr. Smith") my story, and I mentioned Bill's seeming apathy to my condition. He said he suspected Bill also had AS to a degree, and said he'd like to meet with Bill. When I said that couldn't happen because Bill lived too far away, Dr. Smith asked me to email Bill and ask for his feedback, about himself, and his son and granddaughter.

I was very chary of doing this, for obvious reasons. I asked Sis what she thought, and she said, "I honestly don't think Bill is interested in talking about this. His attitude may be, I'm 67, I got this far, president of a bank, full family life, who cares? What do you hope to accomplish by asking? I understand if you just want to know, but I don't think knowing will affect your care, and it might offend Bill . . . Bill Jr. is also successful and Bill's granddaughter is getting the help
she needs, and since they've never invited discussion, I've always assumed they don't want to discuss it. "

I think Sis was being perfectly reasonable and wise. She does not approve of Bill's unhelpful attitude, but she's a realist and knows that talking to him won't help.

So here's my question: since I accept this, why do I feel so hurt all over again? Sis' words brought back all the pain I felt when I first read Bill's laconic reply to the news that I have AS. I think I felt rejected in a way. I feel that if something this significant isn't enough to make Bill care, then nothing ever will. But why do I care so much? Why don't I just brush off his attitude and tell myself, "Well, that's his problem"? I should be tough and realistic enough to do that!

I would like very much to have some feedback about this. Please let me know what you think. Thank you.

higgie

I think it does run in families.

higgie - your sister's analysis of your brother's response makes sense. He is president of a bank, right? In the UK, that would single him out as a member of a small elite group of extremely successful/wealthy people. Some would say that being on the autistic spectrum might have helped him to achieve. He is certainly unlikely to be interested in the possibility of acknowledging any kind of 'weakness'.

There is a school of thought that some of the most successful people in history were probably on the spectrum, but it is probably also true that most of us struggle to survive. The fact that you and your brother seem to have drawn different straws in the lottery of life may go some way to explaining your anger and confusion.

There are a few things I think are going on here.

1. You have had trouble all of your life, and here is your brother who also probably has AS but he's very successful. You aren't jealous, but you want him to know that you aren't as different as he thought. In other words, all of those times he called you out on your flaws weren't valid because HE has the same basic flaw as you. Him not acknowledging this is very painful because it's just as dismissive of your emotions as when he used to point out all of your flaws.

2. He is successful and may not even have to acknowledge them like you have to. This is painful to you because you finally found out what is "wrong" with you while he seemed to float through life untouched. It's not fair, I know. He also has AS, yet you most likely had more trouble. Even worse, he called you out on yours while no one probably called him out on his.

3. He doesn't care because he probably is trying to blend in as much as possible. He has probably been able to mimic people for a long time and has advanced in life this way.

4. He just plain invalidated your feelings and childhood. You hoped he would empathize because you both have AS, but it doesn't work like that, unfortunately. You probably have a lot of empathy, where as he has limited empathy or at least limited ability to express it. You are the same, yet he STILL can't give you this one little piece of acknowledgement in life.

5. AS is all around you in your family, yet people seemed to only label YOU the weirdo. That's extremely hurtful.

My advice is to have low expectations, but try to explain how you feel in "aspie terms". By this I mean logically explaining why you feel the way you do, reminding him that feelings don't have to be irrational. Tell him what you need from him, word for word. Tell him why you need it in a logical manner. He is most likely rational to the point that emotions don't make much sense or he doesn't even understand his own. Tell him that he has hurt you emotionally and you need validation. Tell him that he has all of the symptoms of AS if it makes you feel better. Tell him it never felt fair that you both were the same yet he always acted superior by his actions. Tell him that his AS may have been an asset, but yours isn't and you needed an emotional connection with him that was never there. Get it all out, and expect that he either won't understand or won't care. The point is you need to let him know, even if he can't acknowledge this.

It might help to have your psychiatrist talk to him, actually. Your psychiatrist might be able to talk in a very clinical way that he would understand. Tell your psychiatrist you want to speak to him about all of this to get it out. Ask for their advice. Your psychiatrist might want to talk to him first to gauge how best he would be able to empathize with your level of speech. He might even give you tips for how to connect with your brother without him being overly "cold".

I'm almost positive I have three generations of Asperger's-Autism Spectrum in my family: my grandmother (mother's side), my mother, and me and my sister. In addition, my sister's two children might be Spectrum-friendly or Spectrum-lite. And going back one generation further, my grandmother's father, well, he didn't get married till his 40s, he got an outside walking job for 'health' reasons although this may have really been sensory issues, . . . well, weakly suggestive, but the fact that his daughter was strongly Spectrum, he may well have been, too. So, I might have five generations in my own family, too.

And you are quite right that something as significant as the Asperger's-Autism Spectrum when it affects five generations should certainly be talked about. But, as I'm sure you also know, being right is not enough. It's like the Vietnam War, clearly a very harmful war, but some of the opposition was effective and some of it wasn't.

It seems as though the person who can be most helped is Bill's granddaughter, your great niece, right? And your biggest resource is your Sis, and maybe she can be a sounding board and/or the two of you together can help to educate this girl's father. And go slow. Just the idea that Autism is a Spectrum is a lot to wrap your mind around at first.

Please don't automatically assume this girl is getting good 'help.' A lot might depend on the personal skills of a teacher's aide if she receiving help in this fashion. To me, it seems obvious that a person on the Spectrum should "play to strength and be matter-of-fact about deficiencies." But a lot of psychology goes the other way and really wants you to focus and fixate on the deficiencies. For example, when I was a child I was good at organizing and leadership, getting other kids involved in playing tag games in this great tall grass, and later on when I was about age 10 helping to organize backyard carnivals inspired by McDonald's commercial where they advertised their kit for carnivals, but we largely did it on their own. What I'm not so good at is this casual hanging out in groups any larger than me and one other person, where we're just standing around and the conversation bounces from one loosely connected topic to another. I mean, I kind of get it, but I don't get the point, at least not for any kind of extended period of time. So, I don't want to become a poor imitation of a quote-unquote 'normal' person whatever that means anyway. I mean, no such thing as 'normal' and how boring a place the world would be if there were! I want to explore and go ahead and develop myself and allow to grow and be open to accepting better versions of myself.


You might also be potentially be able to help Bill's son, who I take it is probably a middle-aged guy in his 40s? With a lot of years of life ahead of him.

And please trust your gut instincts regarding all of this. I don't think you need to be 'tough' where none of this hurts. In some ways, I think it's better to be human.

Higgie, you care and you are hurt because it does hurt. Contrary to popular belief many people on the Spectrum feel emotions extremely deeply. We feel them deeper than NT's usually do and when we are hurt we are hurt to the core. You are hurt because no matter how much you think you should not care, this is your family. He is your brother. You have a history with him and you were expecting some kind of bond to form once you discovered the reason for your trouble and once you realized that you had this commonality with your family. This is normal. And the fact that he rejected you again really stings and that is a very deep hurt. So it's perfectly understandable that you feel the way you feel. You can't change him but you can use this opportunity to get closer to your sister. Perhaps your brother will come around one day but he might not. It might just have to be a pain that you have to work through. It sucks but you might not be able to reach him and get close to him through this.

There is this saying:

"Don't waste time trying to teach a pig to tap dance; it will just exhaust you, and annoy the pig".

Your understandable feelings of deep hurt arise more from the past (I think) than what is happening now. You won't change his behaviour, you can't. But you can have a life built on deep self-understanding know and come to terms to what happened, who you are, and go forward playing to your strengths. Best wishes for the journey ahead.

My brother is the same way. He doesn't think highly of me. I don't discuss anything with him.

I'd just let it go, and attribute Bill's attitude to Bill's weakness.

I'm glad your sister understands.

Could it be that you want a different relationship with your brother and this issue reminds you of how far your real relationship with your brother is from your ideal?