Parent's relationship with undiagnosed children

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I've been recently diagnosed with AS - that was a big revelation in my life and it made me happy because the world made sense, finally. My dad passed away recently. He was regarded as a private, bitter person by almost everyone. He was often angry, as far as I was able to tell.

I begin to wonder if he had some form of Autism too, or if he could never come to terms with my wierdness. I have a foggy memory of the past, but I specifically remember him saying "you're f***** autistic, like dustin hoffman in the Rain Man". Which I didn't believe because I am nothing like the character he plays. It was also the only time in my memory that the subject of Autism was ever raised in my family.

Has anyone else been in a situation in their family lives where Autism/AS was ever present yet never properly acknowledged? Hell, I didn't even know I was different until I hit the age of 24 - I just thought I was stupid in some ways and clever in others, without any personality (which isn't true).

I'm also worried that my mom might be autistic in some form - there are signs, or maybe that's just her inability to cope with my symptoms. If I raise the issue now after so many years, would I place guilt upon her? I don't really know what I want to do, I just want her to be happy and not have to be like me for any longer, suffering with AS without really knowing there was something wrong. She doesn't know that I have AS yet, or at least, I don't think she does - maybe she knew long ago and chose not to tell me.

Anyway first post here, glad to know that I'm really not the only person in the world that sees the world the way I do.

Tolian, welcome!

I have, for the past two years, since I self-diagnosed in 2003. (I assume you don't mean the 36 years before that when I was just as AS, but totally unaware of it myself.) My husband is very resistant to acknowledging me as an autistic / AS. Just recently I've brought it up with him again, and I'm pretty confident that we will work through it, because I know he loves me just the way I am and has already adapted to so many of my "quirks." It's just the label he has trouble with (and a lot of trouble).

That's different from what you're describing, which sounds more like a family that doesn't want to accept the manifestations of your AS / autism (which leads to not accepting the label as part of that). As for raising the issue with your mom, I think it depends on how you think she'd react. I sometimes see people and think "I bet they're autistic too," but I never act on that by saying something to them, because I don't know what their reaction would be. They might have such negative associations with autism that they get very very offended, and instead of being able to bond with each other over this common thing we share, they might get angry with me. Or they might be in a precarious life situation where hearing that someone thinks they may be autistic throws them off the deep end, because they see it as some kind of failure or something. I only talk about someone else's (possible) autism when that person is already aware of it (and so far there's only one person outside AS forums I've done that with).

I also haven't shared my autism with anyone in my "real life" other than my husband and one close friend (also an AS). I don't think it would serve me well to have old friends and mothers of my children's classmates having the "autistic" label for me. I think most of them probably have outdated and negative associations with the word "autism" that would lead to problems like shunning or being uncomfortable around me, or uncomfortable having their children around me.

On the other hand, I am trying to be more "me" and less "NT emulation" in my life, which may at some point require being more open about my autism. I guess I would say to you, try to figure out whether it would more likely help or hurt to tell someone about your AS (and as for their possible AS, wait for them to bring it up).

Again, welcome.

Thanks for your response and the welcome.

I've only recently been diagnosed so I too am faced with the question; do I tell people? I took the plunge and told my online friends from a roleplaying game called Everquest 2, which is easy because I communicate with them online.

The response was fantastic, they all said they understood, and said it kinda made sense, and one or two people said it explained why I appeared to be insensitive. A lot of people said they didn't even notice.

I doubt I will receive a positive response from people I work with, who think I'm just a wierdo or ignorant. I want to tell them, but think they'll associate AS with what people normally associate with neurological disorders; unpredictable, unstable, strange, and dangerous. Which of course is absurd seeing as I'm the most docile and predictable person ever. But I don't think they'll see it that way. Maybe I should just mention the eye-contact thing, that might make me feel more comfortable before.

It's just so difficult for me to tell people who I've known for years and having them totally blank me out or something.

My mother is ok with the diagnosis, my father refuses to accept it becasue he is just as AS as me and I think to accept me as AS would mean to accept himself . . .

I was diagnosed at 30 by the way . . .

The few people I know were with me when I was diagnosed - I mean I knew them then - and they are ok with it - my best friend's partner has been a bit standoffish since he found out, but it isn't like I see him much anyway . . .

As for telling people - I tell just about everyone outside of work - but only one person at work knows . . . with my job I'm worried that they might magically find a reason to fire me if they knew . . . which is sad seeing as how it is my AS that makes me good at my job . . .

I am 24 y/o and was just diagnosed this year. I wondered about telling people. I told some, not others.

What I determined was that, to be blunt, most people don't even know what to do with that sort of information. Most people are thinking about their phone bill, whether the girlfriend is going to put out this time, or how to record the basketball game while watching the football game.

When you hit them with, "Oh, I just found out I'm autistic, and it's flipped my world upside down," most seem to respond with internal thoughts like "Yeah, we all have problems" -- "This guy is making excuses for being lazy" -- "You just want to be different, even though you're doing fine" -- "Get over yourself" etc.

Few people possess the freedom of thought to realize that you are trying to improve relations by telling them about your differences. A few do. Those are wonderful souls, because they will listen to you and respond to your new information. The rest aren't bad people; however, they lack broad enough experience to realize the import of what you're saying.



It is wise to be cautious. Humans have strong subconscious buttons in the area of weird behavior. They veer from it, and explaining it away with a diagnosis sometimes only deepens their suspion, because of the profound ingnorance most people have in the area.



If they blank you out because you're diagnosed AS, who the hell needs them? Friends who avoid you for such flimsy reasons should themselves be avoided. They are using you.

Hi Tolian, I am a new user, so bare with me if I don't do this post right!

I come at this from a different angle - as the parent of an AS child. My son is 10, but was diagnosed at age 8 with AS. I went through many emotions - initally I was so thankful to finally have answers to why he always "marched to the beat of a different drummer". The diagnosis explained so many questions. But I won't lie - I went through a long period of time (and still have to fight it back) of emense guilt for what I (and obviously his father) passed on to him. It's very hard to deal with that fact. And I am only 30, so I don't have the old antiquated notions of Autism, but even I found it a tough pill to swallow when he was labeled with anything relating to Autism. Like I said, I have come to let go of some of that guilt, but I would say your mom would probably feel some guilt - I just don't see anyway around that.

As for telling people about my son's diagnosis, I have learned through mistakes over the past two years. I agree with the other posters, you really have to judge a person's personality to see if they can handle the information. I remarried and my new husband's family doesn't really know too much about my son's diagnosis because I just don't think they'd understand. I told them about the diagnosis, but not too much detail b/c like people have mentioned, I think they would just view me as the mom making excuses for my son. Some people completely understand (mostly teachers, school staff, etc.) but most find the information too overwhelming I think.

I am so pleased to find this website. It is so nice to see adults dealing with this because having a 10 year old son with AS, I find myself wondering how he's going to cope with making relationships (romantic or otherwise), get a job, or just function in normal society.

Hang in there and I hope all of you have a wonderful holiday.

First of all welcome Tolian!

That's exactly my experience too. It's very unnerving because it really is a handicap in social interaction. I've also encountered many who've self diagnosed themselves and who are really just associal for some other reason, people who weren't born with the treats, and the treats seem much like people who've been bullied, so I think for those reasons too it's been termed a bs definition by several people I've talked about it with. They seem to react as if it was something we could outgrow, but that's just as naïve as asking a gay to be hetero. A person I talked to recently said that he thought it was a luxurious definition to get away with being an a**hole, referring to someone who acted like an a**hole according to him. What he didn't get was the fact that it's hard for us to understand what exactly is the problem when people don't tell us in words (at least that's my problem, mostly), so they think we know but neglect their wants.
I think many more people will need an explanation of what it means than those who are satisfied with the definition itself, so if you open up continue all the way.

My dad was almost certainly AS. My mother certainly isn't though prolly a little ADD. I didn't really grow up around my dad except for the first five years, and the rest was with my mother.

I'm glad to have found out about Aspergers and that she understands it now. Before, she would often think I was uncaring or purposely hurtful. Now, she's able to take a step back before becoming angry since in most cases I'm usually not trying to come across that way. She has greater patience with me which has made our relationship a lot less stressful.

On one level I completely agree, GD, but there are other situations where it isn't that simple. I don't tell many other parents, for example, because I worry that it will have consequences for my children -- their friends' parents deciding that the friends can't come over to our house or otherwise limiting contact. Of course, most of those parents I don't even know well enough to bring it up with even if I wanted to; but there are a couple that have become friends as a result of our kids' friendship. Even those I don't tell. I don't see how it could help; I only see possible negative consequences.

Ditto for couples we're friends with; most of these are people we've known for ten years or more, and I just don't see how telling them I'm AS could produce anything but bad results. I don't think most of them could even grok it, as all they've ever seen is my NT emulation software running. So the only thing I can imagine them doing is either thinking I'm being melodramatic, OR feeling uneasy about me, and wondering if I'm going to do something unpredictable or weird.

I guess part of the difficulty for me is that I spent so long not knowing I was AS, and working so hard to get reasonably good at social interaction, that I just don't think anyone would believe me -- and even if they did, what benefit would it have? (The big exception is my husband, of course -- he has to live with me, and I have to live with him, and he *really* needs to understand.)

I'm pretty sure I'm the only autist in my family, I'm definitely the odd one. I do have relatives with personal, maybe psychological issue's but none of those could lead to a probability of Aspergers. In my life I might have stumbled on 4 or 5 silent kids......but being silent doesn't make you Aspergers. Only one former co-worker seems like an Aspie to me, with my knowledge of the AS it's almost impossible for me not to think that he might be 'one of us'.

I'm self-diagnosed but never had a real coming-out. It just isn't an issue because I don't feel that I have to announce to the world that I have AS. I was not born as an Aspie but as an individual human being and want to be treated as such. I am not afraid to tell someone about it though; I am not afraid for possible consequences nor am I afraid that I might not be convincing enough telling 'bout my neural state of mind. Just as long as I'm true to myself; I don't necessarily have to be seen that way by others.

A question for those of you who have told others - how do you go about it? how on earth do you bring something like that into a conversation?

With one friend, I had it easy - because she had just read Nobody Nowhere and called me out of the blue, from a different country (I'd moved a few years back) and asked me if I thought I could relate to it. I denied being on the spectrum right away, 'cause I hadn't been diagnosed at that point and didn't believe it myself... but it was easy enough to call back a few months later and say "Guess what, it's official now."

With another friend, he already knew I had some kind of psych issues, since he was the one who'd first encouraged me to start therapy. So I could just say "Here's what they decided I have."

The hardest one was the (now ex) boyfriend, 'cause I knew he wouldn't be tolerant or get it. I started off by saying I'd been doing counselling, which till that point I'd been hiding from him. Then I said the reason I'd started counselling was that there was something going on with me, and here was what it was called. His response was kind of "um, okay... why are you telling me this? what do you expect me to do?" to which I got frustrated and told him to google it and figure out for himself. So he did a cursory search, came back with a whole lot of misinformation, which I corrected for him. He didn't like being corrected and, I think, decided I was just being a pity monger and obsessing over problems. To no one's surprise, the relationship didn't last long after that.

I often find AS comes up of it's own accord sooner than later. I'll end up explaining to someone why they have to speak more clearly to me (my Auditory Processing Disorder) or why I don't have normal routines or a usual job.

I don't make a big deal out of it, and I never expect an NT to fully grasp the implications of such a profound neurological difference. Over time, the ones who really care start to understand.

Then there's the one's who don't. Pyraxis, I related to the ex-boyfriend story:

I broke up with a woman recently. I made a point of not making AS a part of the relationship, but it came up eventually. She did one bit of cursory reading, but beyond that, her attitude--which she stated out loud--was that I should just get over myself and shape up. I explained that I had busted my as* and done years of study on body langauge, acting, eye therapy, etc., to shape up to my present state. Ah ... Se la vie...

I don't really know what the thread is asking, but I will post some of my experiences.

Mum told me this year that a kindergaten teacher told her that I had "Autistic tendencies"
Before I was diagnosed I had a bad case of OCD that drove my family insane, and I would be punished when it showed.

I remember my mother saying several times over "WHY CAN'T MY FAMILY BE NORMAL?"

Nowdays I snap back at her saying "It's your fault for marrying someone that's autistic" and she starts crying.

Anyway, I was diagnosed at 12, not because of my parents, because I came to them and said I was sick of living through OCD hell and I wanted help.

Being older than y'all (I was born in 1944, the same year Hans Asperger first made known his findings), I wasn't diagnosed until late in life - around age 57. My parents were both dead. They had such a bewildering time trying to raise me, I only wish they had lived long enough to find out that there really was something wrong with me, that my problems weren't the result of bad parenting, that there was nothing they could have known how to do.

In hindsight, I feel that my father's parents and brother all had AS.

Just to clarify. The original post was asking if people had similar experiences to mine; growing up undiagnosed, specifically with regard to relationships with your parents. It was also my first post and I feel that since making that post I've come a long way in understanding AS and my life in general.

Some time after making that post, I told my mom about my AS. Her first reaction was "What? No you haven't!" - she had heard about AS from elsewhere. Which surprised me as I assumed she would make the connection. After a bit more discussion she accepted it, she understood. It was great. We spoke about the oddities of my life, and the oddities of my father. And everything made sense, and my guilt of not being normal dropped considerably.

Nothing has changed, but it was good to tell her. Now I don't feel guilty that I don't show affection like NTs do.