Family awareness

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I am an adult with AS. I was diagnosed with AS when I was about 12, when I was living with my father and stepmother. My father has since passed away, and I have no contact with my stepmother. So the only person in my family that knows anything about my condition is myself. I really want the other people in my family to understand me, as they currently do not, and it causes a lot of problems. I'm wondering if anyone knows a good way to get my family interested in learning about AS. They all know I have it, and they have a basic understanding of what it is, but their knowledge goes no deeper than that. I try to tell them about it, but when I do they don't seem interested. I tell them that I have AS, and that it affects my ability to interact socially, but that's all they know. I tell them that and they think they know all about it. But it's like reading the blurb on the back of a book and thinking you know the whole story. How can I alleviate the situation?

I see you people popping in here, reading this, then leaving without sayin' nothin'. 36 so far! Say sumthin'!

What are they afraid of?

It's a big question. I have some vague thoughts, but it's hard to put them into words.

Have you ever tried to approach the subject one-on-one?

No I haven't. I really don't know how. When I try to initiate a serious conversation with someone they don't really seem to understand what I'm doing. I have trouble finding a way to say what I want to say and they become disinterested.

How about an email or a letter to each of them. Email would be cool because you could include links to sites that they could learn about Aspergers from. If you write perhaps you can explain better what it is you want them to understand.

Here's the thing though, knowledge doesn't necessarily bring understanding. You can show them, and teach but they still might not understand. It's hard for some NT's to grasp a different way of being. However, if they realized how much it meant to you, and how wonderful it would be if they "get you" and meet you in understanding, they'd probably do it in a heartbeat, or would regret they didn't do it sooner.

In the challeneges section of my website, there is a link to a page I wrote about Asperger's. You might like to read it and if you think it would help, share it with your family. I'd appreciate knowing what you thinnk too. The link direct link to the Aspergers section is: http://home.comcast.net/~somebunni/Aspergers.htm

You are of course welcome to view the entire site Hope this helps and good luck!

I would be hesitant to try that.
I am comfortable experimenting on the internet with strangers.
If I mess it up, it's not the end of the world.
But family... I would be more careful.
And putting something in writing, if it's not just right, can cause problems.
It might as well be written in stone.

A Link might be good, if an individual seems open.

Emails might work, but that would require that I know people's email adresses. But mainly the problem is just that nobody seems interested. It's been too long this way. Also, I was entirely disconnected from most of my family since I was 9. I barely know them anymore.

I dunno what to say really. I am not veryinterested in my family, hardly have any contact with them at all. The only people who I care for in my family is my nan and mum. My mum is an aspie too.
I understand Bunni's suggestion and tahitii's concern. If you want to put energy and effort in trying too make your family understand I would say have a good try and who knows? I would not try amelessly though. You might get frustrated or bumping your head against the wall.
I agree with Bunni knowledge doesn't automatically bring understanding eh. If your family is not showing any interest or a bit of understanding then I would just let it be.

How far away are they, geographically?

All within 20 miles. Except for my sister who is in Montana right now. I live with my grandmother. Everyone else lives within the city limits. It's really just my grandmother, my brother, my aunt and uncle, and two cousins. I have no contact with the rest of my family.

I have drafted a letter that I would like to give to each of the people mentioned in my last post, but before I do, I'd like to know what you think of it. It is a bit long winded, but it is as concise as I can make it. Here it is:



This letter is an attempt to explain myself. If you are reading this it is because I want you to understand who I am, what I know, and what I have to offer. Maybe I'm just whiney, or selfish. Maybe I'm just making excuses for myself, but I don't think so. I'm putting myself on the line here, and hoping I won't regret it. So read on, if you dare.


I have a condition known as Asperger's Syndrome. It is an autism spectrum disorder, very similar to High Functioning Autism, or HFA. It affects the way I think and act. It causes significant impairment in my ability to interact normally with other people.I am going to try to explain some of the differences in the way I think, and the problems they cause for me, in the hope that some good will come of it. If you want to know more about AS, there is a great deal of information about it to be found online. I heartily suggest that you read some of it.

Compassion. What is it? Is it the ability to understand what others feel? Or is it something more. I think compassion is the ability to feel what others feel, not just understand it. I am happy for you. I am sorry for you. To some these may just be friendly phrases to show that you understand. I don't know if this is true of others, but I literally FEEL the emotions of others. When the people around me are happy, I am happy. I am happy BECAUSE they are happy. It's as if happiness were a tangible thing, and that when you have it, it emanates from you. And that if you are attuned to it, you can touch it, feel it, and keep some of it for yourself. Have you ever heard a joke that you didn't get, but that other people did? And when they laughed, did that make you smile? That happens to me a lot. I don't smile at the joke, I smile at the laughter. I smile because they are happy, and that makes me happy. THAT is compassion. That is what I believe.

I believe that thoughts and emotions are tangible things. And that if you are attuned, if you pay attention, you can sense them. Have you ever stared at the back of someones head, when that person didn't know that you were there? Have you ever observed that they suddenly turned and looked at you for no appearant reason, then turned and faced forward again? I see this all the time. What if that persons sensed that you were looking at them, even if they didn't realize it? Is this possible? Is it just wishful thinking? The more I think about it, the more I think not. There is something there. Some unspoken bond hidden just below the threshold of human awareness. And I intend to understand it. This bond is what lets an animal sense that his friend is hurt. This is the bond that lets a dog know when his master is in danger, even before he knows it himself. When your friend cries, do you not console him? Certainly you do not laugh and play as if nothing is wrong?

I wonder sometimes if I am not more attuned to this than others. I struggle daily to be understood. I try so hard to share my feelings. I want to show people that I care for them. I want to be near them, to play with them, to talk with them. To touch and be touched. To indulge my desires without being made to feel that I am not allowed to be happy. Why is it wrong to do what feels so right? Why can I not hung someone that I love merely because I want to be close to them? Why am I made to feel shame if I tell someone that I love them? I wish to do all of these things, but I do none of them. I tell no one what I feel, because they seem not to care. I touch no one, because I fear that they will pull away, or look at me as though I were insane.

I have never known hate. I'm not really sure what hate even is. It seems to me that hate is anger that never stops. I cannot understand this. Anger by itself is difficult for me to understand. I am very well acquainted with frustration however. When I struggle to be understood, I sometimes become frustrated, but rarely do I become angry. Usually I just withdraw and try to find out what went wrong. What I said or didn't say, did or didn't do that was unclear. It is only when misunderstanding causes loss or pain that I become angry. And then only for a moment. It flares and dies before I ever act upon it. I think this is because anger causes you to want to do harm. But when I feel this want, reason tells me that causing harm will not make me feel better, but rather increase my problems. And so I do nothing. I frequently do nothing. I feel that it is better to do nothing, than to do the wrong thing.

I cannot abide an evil thing. When I see evil, I absolutely MUST speak out. I see evil every day, and I speak out against it. One would think that this was a good thing. That others who were not aware of this evil would, upon hearing of it, join together and fight against it. Strangely enough, this doesn't happen. It would seem that most people would rather simply avoid evil. They seem to think that this is possible, although I'm not sure how they can justify such logic. But no, they would rather ignore it, and when I point it out, I prevent them from doing so. So the end result is not justice, nor a triumph in the name of good. The result is punishment. I am punished for trying to do what I think is right. I FEEL that something is wrong, and I TRY to tell someone. But all I get is misunderstood.

I have become so accustomed to isolation that I hardly know how to reach out anymore. I despaired, and I gave up. I didn't want to, but I did because there seemed to be no hope of ever breaking down the barrier between myself, and everyone else. It almost seems as if caring and compassion are things that I dreamed up. That they cannot truly exist, except in my mind. But I know that this is not true. Because I see them from time to time, between other people. But never for me. I want you to know and to care that while I seem uninterested, it is only because I have given up. I have tried and tried, but no one has ever tried back. I try to be understood, but no one tries to understand. I cry out for help! Yet no one hears. I try to ask rationally, but I come off as detatched. I lash out in frustration, but I am met with anger. It seems that everything I do is an enigma to those around me.

I can't read the look on your face. I don't know what you're trying to tell me. But I can feel it. I can feel when you are happy. I know when you are angry. I can feel the pain in your voice. I do not think that you can do this for me however. If I am happy, I must show it somehow, but I can't. I don't even know how. I feel all things more intensely than others, and yet to others it seems that I feel nothing at all. But it is only because I cannot show it, not that I don't feel it. When I hear a good joke, I rarely laugh, but I always smile. Others who hear will laugh, but I do not. In my heart, I am laughing louder than all the rest. But outwardly there is nothing.

I need you to understand these things. I have never spoken about any of this before, with anyone. I have tried to find a way, many times. But the right moment never comes. And neither do the right words. I need your help. I need you to understand that this is extremely important to me. Life for me is like a hellish nightmare, where no matter how fast you run, the monster just keeps gaining on you. But in this nightmare, I don't wake up before it gets me. If you really care, you will take this seriously. I NEED you to take it seriously. When you don't understand me, tell me so. I'm not just some eccentric who occassionally does wierd things. There is no normal person hidden inside of me, trying to get out. This is who I am. I hope you can understand that. I don't need your advice, or your pity. I don't want your time, or your money. I want you to understand me, to care about me, and most importantly, to love me for who I am.

That's a very good letter.
But it's still risky.

My first impulse is to say that you should put it away for a while (days? weeks?) turn your attention to something else, let it stew and come back to it with a refreshed mind. If it still seems like a good idea, go with it.

My second impulse is to pick an individual, and edit the letter with that person in mind. I don't know the people, so I can only guess. (You and me, cousin -- you might understand because you're my age. You and me, Grandma -- you remember how I've always been.) One success would give confidence, information (what worked and what didn't) and support for when you approach a second person.

My third thought is to resist the temptation to increase the total length. If you feel the need to add something, force yourself to cut something out. I don't see anything that can be easily cut, but overall, the shorter the better. Too much information might overwhelm them.

Having never done anything like this, I can't pretend to be an expert.
I'm just tossing out thoughts that might or might not be worth anything.