Diagnosed as adult: how to tell family?

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I was recently diagnosed as being moderately autistic, under DSM-V (or having Aspergers Syndrome under DSM-IV). My wife has known ever since I first suspected, and I've told a couple of close friends, who were all very supportive and nice.

I'd like to tell my Mom and maybe my brother, but I'm a bit unsure of the best way to do it. It's one thing to tell friends, who don't have all the history with me that my family does (good and bad). I'm never really sure how Mom will react to things--sometimes she's been really supportive (like when I told her Dad abused me), sometimes she's pretty resistant to hearing things she doesn't want to hear (like when I changed my major in college). Mom is intelligent and well educated, and knows a woman at church with two teenaged kids with Aspergers'.

I had thought to tell them face-to-face at Thanksgiving, which is the next time I see them in person. I'm arriving a couple of days before my brother, so I figured I could tell Mom, then Brother when he arrives.

My therapist thinks a face-to-face revelation is a bad idea--if she reacts badly, I'll be stuck there for a week. Therapist thinks I should tell Mom in writing before Thanksgiving (by post, not email), so she has time to process it (and cool down if necessary) before the holidays. The letter seems awfully impersonal to me compared to a conversation.

My reason for telling them is mostly just that I don't like having to keep something so important from them--a chance for them to understand me better and why i was always the way i was. I don't blame them for anything, since I was growing up before Asperger's was known in the US, and because autism is a neurological condition, not caused by bad parenting. I'm not really asking for anything except understanding, and hoping to be a bit closer to them.

For those of you diagnosed in adulthood, how did you tell your family? Any suggestions on how to make this go right?

What helped me tell my parents was stressing that this is something I was born with, not something they caused me to have.

I am in the same dilemma, I don't know who to tell and how to go about it.

Did you tell them in person? How did they react?

Get a copy of Tony Attwood's "The Complete Guide to Aspergers". 'Casually' leave it lying around somewhere they will see it. They will probably either look at it covertly out of curiousity or pick it up and say "what's this about".
You can open the conversation from there: "Oh he's a psychologist who specialises in Aspergers Syndrome as a neurological difference - have you heard of that?" And they may respond positively "gee that's interesting" (which will open the door to more dialogue) or they may react defensively/aggressively/dismissively "what a pack of rubbish, they're just losers" and you can gauge from their response how to handle it from there. If the latter, then end the conversation "well it's not a book for you then, is it". End of conversation. Don't try to change them or their opinion. They may come round or they may not. You don't need their approval to use the knowledge to enhance your own life and being. Take what you need, and if they are or become supportive, interested, willing to engage well that's a bonus.

I've been gradually dropping Aspergers' into conversations over the course of the year--I noticed that she has the music and biography of Susan Boyle, and mentioned she has Aspergers'. I dragged everybody to see "The Imitation Game," and then mentioned that some people think that Alan Turing had Aspergers'. This was not greatly helpful since Mom tends to doze off in theaters and is somewhat hard of hearing, making it hard to follow the dialogue. This did lead to her mentioning the two teens in church with Aspergers', but she described them in a negative way--as looking like zombies to her.

That gave me a pretty bad feeling, and I didn't really know where to go from there. I mentioned some smart and talented people on the spectrum: Vernon L. Smith, Tom Rice, Darryl Hannah, and Paddy Considine (which probably should have clued her in that I was growing a really detailed collection of knowledge on the subject for some mysterious reason). She did say that one of the teens is going to college, so I guess she does recognize that folks on the spectrum are intellectually capable.

We can provide subtle leadership for them and if they are not receptive, that is not up to us. If they choose to remain ignorant, that is their right, sad though it is. "Never waste your energy trying to teach pigs to tap dance: it will only exhaust your energy and annoy the pig".

My wife suspected long before I had any official confirmation. For most people who know me and find out through conversation, it's just a name for one part of my extensive quirkiness.



Despite my Mom's love, I never know if I can count on her support when it comes to anything that she was taught was embarrassing or shameful when *she* was growing up. Luckily, right now is a great time to come out for so many things - if she's at all concerned with pop culture & not in a closed subculture.



If you think it'll be a big deal to her, I'd go with the letter. It gives her a chance to process the news & not react in a way she might regret. She may also choose to ignore it as her way of not-dealing with it. You might want to include something like, "if this is too much for you to deal with, just let me know you read this letter".



While it's very important to us people on the spectrum, there's a good chance they've always known you were atypical &/or a name for it may not matter. Also, don't forget that there is a chance they are too - to some degree - and don't know it. So their reaction(s) may not be what you expect?



I told mine in person b/c I knew they'd have no idea what it means and wouldn't bother to find out, or care. Then again, I'd just "come out" regarding other things and they already had a lot to process. It's years later and the only part of AS they understand is the side issues like my auditory processing delay & being an introvert. Really, they've known me for my entire life and having a label for part of my oddness is just a convenience.

I first suspected that I had AS when I first heard about it at the age of 20. I went out and told all my closest family members. They did not believe me. They did not shun me either. I guess they thought I was neurotic, being a hypochondriac. When I finally got diagnosed at age 28, I mentioned it in a matter-of-fact way to my mom, dad, and stepmom as part of talking about the services I was receiving from Voc. Rehab. and all the drama going on at the time because I was unemployed and struggling to finish college. Again, there was no reaction. By that point, I had already gotten used to the idea of having Asperger's, and I knew from their previous reactions (eight years earlier), they didn't understand AS and didn't really care whether I had it or not. I still handle the question of whether or not to disclose on the basis of 1) does this person need to know and 2) is this person capable of understanding AS. Several friends know. My supervisors at work know (being responsible for providing with accommodations if I need them). Any women I date must know, and our relationship with be contingent on her being able to handle my AS symptoms. I do not tell people unless they absolutely need to know or I feel they are capable of understanding and being supportive. One recommendation I have for disclosing is to be specific about what you want from the person you are disclosing to. in your post, you said you don't really want anything special from your family (no change in the way that they treat you). I recommend telling them that.

I was examined or tested somehow when I was about 10 and having a lot of behavioral problems at school (fights and problems making friends). The psychologist said I had a high IQ but "emotionally immature." He didn't give her any recommendations for counseling so she didn't have much of a course of action. Everybody just assumed my quirkiness was due to my IQ.

I am pretty sure that Dad was on the spectrum, given his difficulties socializing, intense interests (he was a professor of geology, and also was interested in pre-Columbian Vikings), always wearing the same kind of clothing (cotton in muted colors), and difficulty understanding humor. His brother (worked at NASA) and father (taught English lit and had Shakespeare memorized) may have been on the spectrum too. My uncle and grandfather were both experts in certain things and had photographic memories, but were not great with people. Grandfather refused to go to movies, supposedly because he thought they were a low form of entertainment, but I think it was really because he didn't understand them. I think this might help Mom understand the difficulties she faced in her marriage. Dad passed away a few years ago, so he can't be diagnosed, but I think it would explain a lot.

Mom has a PhD and she actually conducted some studies with using music therapy to help kids with cognitive development issues (I forget what kind), so she probably has at least a passing knowledge of the syndrome. The question is, would she think it applies to me, who is living independently and earning a salary?

I am probably over-thinking this, trying to plan out every possible outcome and contingency, when real life just doesn't work like that. UGH! The Unknown!! It really scares me.

This is my first post on here and I'm having the same dilemma about who to tell.

I've always known I was a bit different but after moving in with my girlfriend last year and my first child being born earlier this year things got to breaking point between me & my girlfriend so I decided to go to my doctor. He was really good and referred me to the local aspergers team who after my assessment have put me on the waiting list for an official diagnosis.

My dilemma is as part of the diagnosis they would need to have somebody present who has known me since childhood (ie one of my parents) but I still don't know if I want to tell them and I think going back over my childhood (especially the bad things) would do more harm than good to me & my parents.

So far the only people that know are my girlfriend & a few people at work (my managers & HR) who have been really good, I do quite a specialist job which I think the way I am is actually a benefit which my employer recognises too.

The quote below sums up the way I'm thinking at the moment. I'm thinking about not bothering with going through with the official diagnosis as all it will be is a label on me for being a bit different.

Well....

My husband just told his family point blank. I have Aspergers. He went to a big deal specialist, so there wasn't any questions on the testing etc.

What we have found out, some people flat out refuse to accept the diagnosis. They see it as a cop out, and excuse for sh***y behavior. My sister thinks if you can function at a job, you aren't Autistic. I can't bring it up at all, as she shuts down the discussion immediately

His parents viewed it as they were getting blamed for all his past behaviors. They are over that now.

Some people didn't cared, some bailed, and some refused to accept the diagnosis. You never know who will do what. No amount of hinting around seemed to make a difference on the acceptance. Even offering books didn't matter.

Just tell them, but prep yourself it may not go over well.

I told my folks (aunt, cousins, and grandmother-- no siblings and no surviving parents by the time I had a Dx) by telephone. It both was and was not an attempt to explain myself and seek some understanding (those were things I did not expect). I wanted it to be off my chest, not something shameful that I had to conceal. I wanted to offer them an understanding, albeit posthumous, of my ASD forebears on both sides. Most of all, I wanted to thank them for the difficult job they did (a job that currently has phalanxes of therapists and shelves of books to support and instruct a parent in doing it) reasonably well, on their own, without even realizing they were doing it.

If you're going to disclose, that is the point of view I would suggest doing it from. Not a justification for who and what and how you are, but an expression of gratitude and admiration for the job they did and the things that turned out right.

If you are seeking understanding, acceptance, tolerance, or for them to view you and/or the past in a different light in the presence of this new information, prepare to be seriously disappointed. It takes most people a long time to come to those things (if they ever do at all) if they are not already afforded you. If those are the things you seek (those, or validation in any form), I would urge you to both prepare for major disappointment and reconsider the choice to disclose at all.

Like you, I waited until after my official diagnosis before having "the talk." It helps knowing that no matter what they respond with, you know an expert in ASD has your back, if nothing else. Other than that... it's a crapshoot. Good luck.

I went with a phone call for the initial discussion with my parents. The one thing I did which I would recommend you absolutely not do is mention offhandedly or directly about your suspicions about your father also being on the spectrum. That is a conversation for another day down the line. If you mention these suspicions, it frames the conversation in a way that would put your mother on the defensive. The end result will not be positive. If you *do* end up talking about that aspect, make sure it is she who brings it up. And if she does, you're probably open to a bit of critical thinking on her end, which will show you that she's actively considering your words.

And definitely make sure to note that it is a developmental disorder you were born into, and that she had no hand in "making" you Autistic during your childhood.

I don't have any siblings, so I have no input on that.

But yeah, my vote is for over the phone prior to Thanksgiving. At least a month prior, in order for her to have some time to mull it over before the inevitably awkward Thanksgiving. In person disclosure may not achieve what you want it to.

I told my parents over the phone and emailed them some literature. I don't know they overly accept it but they don't outwardly deny it to me. I emailed my siblings to tell them, knowing if I attempted a phone call, they would shut me down and dismiss it. I haven't heard from them since, but I think I didn't do it very well and missed most of the vital things I was meaning to say - I will probably try again. I'm in a bit of a dilemma about it, having no response at all - I would like some discussion from them, but I don't need them dismissing it as some grab for attention or excuse for bad behaviour etc.

I am also son of an intellectual, whom I suspect to be on the spectrum. He's too old now for it to make any difference. It seems university lecturing was a great place for Aspies to hide in the old days!!

First time I brought it up as a possible diagnosis, it was in person. We were sitting in a car.