Disasters in Disclosing Diagnosis

[SonoranPrincess]

I was recently diagnosed with high functioning autism (Aspergers). In my case, a number of my family members have it, and some are also either depressive or bipolar. None have been interested in getting a diagnosis. After being diagnosed, I told very few people, but decided to share the news with 3 of my 4 children, my husband, a cousin and my sister. My husband and children took it well, and are supportive. My sister and cousin, who I suspect both have HFA, refuse to talk with me about it. My cousin said. "Why would you want to open that can of worms?" I sent my sister the book, "Aspergirls," and was met with total silence. My feelings are hurt. I think if she rejects my Autism, she is rejecting a big part of who I am. Do you have family and/or close friends who treat Aspergers as a deadly, contagious disease?

 

[Suzanne]

It is strange how people react - I can't get my head around it! I mean: there is one thing saying: no, no, you can't have autism, not my precious one, or something like that, but to react as if you have done something awful, is really bizarre. I mean: what on earth is the: open up a can of worms? Unless what is being said is that this has been hushed up and no one wants to face the fact that there is a reason for our behaviour pattern?

I told my sister, who took it as though I said I just eaten dinner, lol ie no real reaction, other than to say, that her friend's son has autism and oh, sorry to hear that, but no change in her behaviour towards me.

My husband is sort of wrapping his head around the idea, but still refuses to go further; in fact, he rather annoys me because he goes off on his own, in silence and watches children with autism, despite me saying that female aspies are different and then says to me: well I have been looking etc but your I am an aspie, doesn't add up! I mean: come on! Why can't he look at information I tell him about? I suspect it is because he wants to make a show of being with me, but doesn't want to face it, because it means he has to be more gentle with me or more accepting towards me.

One, who I do call a friend, did not react negatively and just said: oh so and so, has a son, who is aspergic.

Most have not even heard of aspergers and thus, what is the point of telling them, unless they care to interact with me?

The worst part about aspergers, for me, is the fact that I do not look autistic in my face! I worried in fact about this, but since being on youtube, discover that many who have aspergers, do not look autistic and have been told: you can't have that! But hehehe when they start speaking, I recognise myself immediately!

 

[Warmheart]

Regarding any necessary disclosure, I don't need any external validation. How the other person responds to this information has nothing to do with me. The other person has a right to their feelings on the topic, whether those feelings are disbelief, annoyance, embarrassment, disgust, pity-- or if they share my viewpoint that my groovy neurology explains my many endearing quirks.

 

[Judge]

Absolutely. It's bewildering and frustrating at the difference of how those in my tiny orbit have taken me telling them.

One seems to totally get it. My brother, who is most in a position to know having grown up with me over many years. Another seems completely defiant in accepting or understanding it. My cousin, who works in the health insurance industry who seems committed to acknowledging forms of autism as merely psychological in origin.

And my one remaining "friend" who seems to accept it not because he truly understand it, but because he is an understanding and open-minded person in general.

The last person I told was my former sister-in-law...a retired registered nurse. I have no idea what she actually thinks.

It's all allowed me to formulate the notion of "need-to-know" only. That no matter how liberating or calming knowing and self-awareness might be for us, that to those around us it's a complete "crapshoot" as to whether or not they get it at all.

So in essence, proceed with GREAT CAUTION if you feel compelled to tell someone. Anyone.

 

[AsheSkyler]

My dad says "psychology is all in their heads", and my literalness has to agree!

Autism is not that important to me. It's a label, like "sheepdog" or "hound". I'm still a dog, maybe just a different breed. If they have a problem that I bark and don't bay, that's their problem. I get more ticked when people don't accept key components of my personality, history, and preferences, like calling me sheltered or deprived because I didn't watch one stupid movie. A Perfect Storm sounds incredibly boring. If they want me to watch it, they'd better step up their game.

 

[Judge]

A Perfect Storm sounds incredibly boring. If they want me to watch it, they'd better step up their game.

Well, if they told you the truth that it's simply a two-hour working-class homage to the deep-sea fishing industry, would you still be interested?

Might help though if they added subtitles to it. Hard to follow their dialect.

 

[SonoranPrincess]

I guess I hoped my sister would discuss our shared experiences with me, and how she manages with Aspergers (as I said, she denies it in herself). Most of my relatives see themselves as much smarter than the average person, and generally superior, and in their minds that accounts for their differences from the general population. My cousin is an attorney, with a very high IQ. He wants no part of identifying himself as Aspie (despite the fact that he spent a long time in Barnes Hospital, St. Louis, psychiatric ward when he was a young man).

 

[SonoranPrincess]

In the end, it doesn't matter what others think, that's true. We soldier on....

 

[Stopheles]

Both of my parents and all of my grandparents passed away years before my diagnosis. The family I have left is a few aunts and an uncle, a couple of cousins I haven't spoken to in years and a brother who has been addicted to narcotics and sedatives for so long I don't know if he actually hears anything I say. Haven't spoken to him in 3 years. I have very few friends. The one I told was a home health aide for children with severe autism. After I told her, she was just like oh okay. The next time I saw her, she began making weird passive aggressive remarks to me with a little smirk on her face. It continued until I finally told her I didn't know what her problem was, but she needed to stop before I physically removed her from my home. She left and hasn't spoken to me since. I have absolutely no idea how such a supportive friend turned that quickly. I haven't bothered telling anyone else. For 35 years, I have been "weird' "eccentric" was once described as "that trippy little chick with the laugh" That's fine with me.at least I'm not "that completely unremarkable person"

 

[Stopheles]

Although, I have been a single mom for 14 years, when I told my children who are 14 and 12, their responses were "Cool, so can I show you the comic I just drew?" and "Huh. What's for dinner?" Gotta love it.

 

[Progster]

My mum, brother and younger sister were very supportive, and seemed mostly to have a "oh, so that's what it is" kind of attitude. My older sister never spoke to me about it, so I don't know what she thinks. My mum told a couple of her friends and I don't know what they think.

 

[Aspergirl4hire]

I guess I hoped my sister would discuss our shared experiences with me, and how she manages with Aspergers (as I said, she denies it in herself). Most of my relatives see themselves as much smarter than the average person, and generally superior, and in their minds that accounts for their differences from the general population. My cousin is an attorney, with a very high IQ. He wants no part of identifying himself as Aspie (despite the fact that he spent a long time in Barnes Hospital, St. Louis, psychiatric ward when he was a young man).

I remember my father flatly refusing to discuss anything about what went on in the house when I was growing up. Looking back, he was either aspie or HFA, with some other problems. My mother was similarly resistant to discussing anything whatsoever if it meant she had to look at herself critically.

I remember someone years ago trying to make friends with me by explaining that she's a Highly Sensitive Person. Looking back, I think that was a code phrase for AS, but I didn't know anything then. My initial reaction was Gee, that sounds precious. Can't you just tell me what things you're interested in? And why you sought me out? Twenty minutes later I was thinking, If this is a set of rules for dealing with you I think I'd rather opt out.

A few years later the shoe was on the other foot: I was asking someone who thought of herself as my friend to make some changes, and she just refused but wanted to keep up the relationship, and I opted out there because she was just too painful to be around and she didn't want to know that.

My thought is that if someone denies aspishness in themselves, there would be nothing for me to discuss. Their denial itself is the management. If someone wants to deny it in me, I can make a decision about that person and the relationship to be defined has to accept what that person wants as well as what I want. Cold, perhaps, but takes all views into account. FWIW.

 

[AsheSkyler]

Well, if they told you the truth that it's simply a two-hour working-class homage to the deep-sea fishing industry, would you still be interested?

Might help though if they added subtitles to it. Hard to follow their dialect.

That would do it. Blue collar workers and especially boats interest me a lot more than doomsday weather movies. While the weird ice tornadoes in Day After Tomorrow (or one of those "day/tomorrow" movies) were interesting, a bit too preachy to keep my interest.

 

[Cerulean]

My mom and most of her side know but they don't call it by a name. For example at holidays they now put out a puzzle in a separate room for me in case I need a little quiet time to recharge amid all the chaos family gatherings can bring, but it's never really discussed. I used it for a couple years and then I learned to crochet, which lets me work out any anxiety with my hands and still stay around people because I have something to focus on. My mom listens with more patience now when I vent to her about what probably seems mundane but is very important to me, because it's not just me being weird or self-centered, there's actually a named reason that certain things get to me.

My dad's side.... well I guess they know, I'm facebook friends with a bunch of them and post stuff about it on there but I never really told them directly, so they must assume. So I don't know what they think, it's never been mentioned.

 

[Juliet8080]

I was recently diagnosed with high functioning autism (Aspergers). In my case, a number of my family members have it, and some are also either depressive or bipolar. None have been interested in getting a diagnosis. After being diagnosed, I told very few people, but decided to share the news with 3 of my 4 children, my husband, a cousin and my sister. My husband and children took it well, and are supportive. My sister and cousin, who I suspect both have HFA, refuse to talk with me about it. My cousin said. "Why would you want to open that can of worms?" I sent my sister the book, "Aspergirls," and was met with total silence. My feelings are hurt. I think if she rejects my Autism, she is rejecting a big part of who I am. Do you have family and/or close friends who treat Aspergers as a deadly, contagious disease?

Mostly I feel that when I do something wrong and I apologize for it, and the problem is because of my autism, no one acknowledges the fact that I'm autistic. It's like I'm still considered a NT even though I'm not and it's really frustrating.

 

[dragonwolf]

I guess I hoped my sister would discuss our shared experiences with me, and how she manages with Aspergers (as I said, she denies it in herself). Most of my relatives see themselves as much smarter than the average person, and generally superior, and in their minds that accounts for their differences from the general population. My cousin is an attorney, with a very high IQ. He wants no part of identifying himself as Aspie (despite the fact that he spent a long time in Barnes Hospital, St. Louis, psychiatric ward when he was a young man).

If she's denying it, then to her, you're probably the truth staring her in the face, and she can't handle that right now. People in general react pretty poorly to things that challenge their worldview, especially when it's about fundamental aspects of who they are.

Give them some time and some space and they might come around. Don't try to educate them about it for now. Let them come to you when they're ready.

 

[danielcollins]

For me personally, I've always been very "I don't care what others thought" so I've not battled with this one. But, I can understand what it feels like for someone to deny a fact about yourself.

Although this isn't in proportion I once met a friend of a friend who was a rather outspoken, rude, opinionated person who outright denied my aspergers. He said, his parents were teachers and that I "definitely wasn't" - one of the very few times someones rubbed me up the wrong way, really very very quickly. Needless to say there was a rather loud argument (understatement!).

I'd search inside myself for my own approval, before seeking others.. it puts you in a better position to handle other's issues with your aspergers. Sorry if this sounds rude?! it's not intended to be..