Disclosing autism

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I was wondering if very many of you tell other people about your autism and also what kind of responses you get once you have disclosed?

My mother says she "doesn't think of me that way," completely disregarding all the stories she's told of my early childhood that reinforce the diagnosis.

My husband and some of my in-laws know but haven't specifically commented on the matter.

I have a friend who may or may not also be on the spectrum, and who I hope takes comfort in my speaking out and making clear that if they are, they're not alone.

I have told a few people. Mostly, immediately after my diagnosis to people I really wanted to be honest with. Since then, very rarely and in an organic way, when it came up in conversation. Responses from people have been:

- "Thinking about it, I probably am as well."

- "You seem normal to me, so I don't think you are. Everyone does that..."

- "You don't seem it. It must be very mild."

- "I'm sorry to hear that. Unless it's a relief?"

- "Wow! That's really interesting. So, what does that mean for you?"

So far I met with:

"Oh. I see."(a classmate)
Awkward silence.(family members from father side)
"Of course you do. It was clear from the start." (family members from mother side - grandma was the first one to diagnose me)
Sarcastic "Yeah, as if." (my friends and my father)
"I don't think you do. You are great." (best friend)
"Really? I would never guess. You are doing very well. I know a boy with Asperger. And you know? He seems similliar to you. He even wears the same clothing style and is also thin and tall."(a mother of a deaf kid)
"So that's what it was! We were wondering what is wrong with you. You should tell us earlier. You would get accommodations." (at school)
"Why are you disclosing it?"(at job interview)

I dont really disclose it, certainly not until way later on in friendships where it would seem relevant to disclose for value. But then again, I had it last year where a classmate just outright asked me if I was autistic, so I guess people work it out before I have to disclose it. I guess that's a pro and con of raising awareness of autism.

You don't look Autistic.
Autism is just a result of bad parenting.
You just need to learn to grow up.
There is nothing wrong with you.
If you tried harder you could over come your struggles.
You just want attention.
You are just delayed.
Everyone has a little Autism.
You must be high functioning.
Autism is just a different way of thinking. Its not really a disability.

I haven't disclosed to anyone since the initial three people I told. Since then, I haven't made it a policy to disclose to anyone who knows me. I'm prepared to find that maybe this is the wrong choice, but at the moment I don't want to disclose.

Of the three people I've told here are their responses before and after diagnosis:

Before Dx:

Person 1: "No you're not. You're not like Rainman." (Seriously, this was actually said to me, it's not just a popular myth.)

Person 2: "I can see that. I think I am too, there are so many things I think I'm like -- we're all on the spectrum really." (Seriously she really said that.)

Person 3: "Well if you feel it fits...have you looked into Highly Sensitive Person" syndrome first though? I think we pathologize everything too much both in the mental health profession and in society now."

After Dx:

Person 1: "Okay. I've wondered about myself too. I might have it. I don't like people."

Person 2: She actually responded very strangely and our friendship went downhill, even though she had been accepting and encouraging before my dx.

Person 3: Acceptance but she never frames me in "autism" or any issue I'm having. She seems to want to never think in terms of the spectrum even when I'm running a very spectrum fueled problem by her, such as being overwhelmed with social stuff, etc.

I told someone last week that I was thinking of getting tested, their response was a look and nothing else. I really don't know if that was good, bad or they just didn't know what to say.

I told my spouse I that I fit about 99% of the female criteria but he's pretty indifferent. He actually mentioned that some aspie traits fit him too which I haven't had a chance to delve into since I have been focusing my research on adult females.

Other people, like my friend the shrink, she probably knew before I figured it out but hasn't said anything yet.

I have most just told friends and family.

Some said they were not surprised, it made sense.

One person seemed to think being autistic meant you were a genius. (I am not a genius.)

Some were skeptical and questioned it....said things along the lines of "You're not that weird."

Some said nothing at all....it was as if I hadn't spoken.

I sometimes tell if the topic they are already speaking is related to autism and I have something to say about it. Or if I am having very personal discussiong with someone and it feels natural to tell.

They don't react that much. Sometimes they start speaking me like I was an idiot and sometimes they may say that they wouldn't have believe because I look like normal or something like that. But normally it doesn't cause significant reactions.

"Ohhhhhhh, so that is why you are so logical, blunt, tactless, unable to read social cues, weird, analytic, and/or hard to get along with!"

My whole family knew I was autistic before my diagnosis, in fact, it was my mother who first told me she suspected autism. Since then, I've told my two friends, all my college professors, and my bosses and a couple of co-workers at work. No one has ever been skeptical or believed I wasn't actually autistic. I guess I don't do as good a job of hiding it as others. My mom preemptively informs everyone she meets, with whom she suspects I'll have contact, that her daughter has autism, because she wants them to be prepared for whatever aspie-isms I accidentally throw their way upon introduction.

This is something I will be making a number of judgement calls on for the individual situations.

I will be taking as my guide some words of wisdom from an etiquette guide calle "And the Bride wor black leather". It relates to the situation where o's spouse dos not fit the conventional patters and it occured to me as also applicable to a diagnosis.

In the byusijess setting, if the lack of a piece of information will create difficulties, then it needs to be made available..

These are the judgements I have made to date:

At present i have an informed suspicion, started by finding too many moments of recognition on listenning to lectures on the subject by people on the spectrum. The suspicion was re-inforced when I found some of the screening tools and found I scored on the borderline, over on some, under on others. I followed these up with a good looking back session and note making. Eventually i shared this with one person who has nown me for ten years abd is also well informed in matters of psychology. Their feedback was consistent with the suspicion, making that discolosure a good judgement call.

Later on in the year the opportunity arose to share the suspicion with another member of my clsoe social circle who is themselves diagnosed on the spectrum, and agin this was a good call as the feedback confirms the suspicions in some degreee "Yes, I recognise some bits of me in you as well so it wouldn't surprise me..."

A month earlier in conversation with a lady who's son is on the spectrum, she asked me point blank "Are you Aspergers?" and then apologised for such a blunt question. I decided to answer honestly saying i had reason to suspect.

In other situations i tend to disclose instead that I take a close and informed interest in the Autism Spectrum (true) and that my little side business makes a contrinbution to the National Autistic Society from what I charge for labour. In work i may describe how that knowledge has helped inform me over some past difficult situations where it now appears that one or both parties had autistic traits but were unaware, and the blind spots such traits can create may have lead to the difficulties.

While I have just a suspicion I would hesitate to make any further disclosure of the suspicion. However, I am now making first steps regarding undergoing an assessment. This would change my suspicion into something more objective, such as confirmation of certain traits and blind spots, and give a good estimate of the probablility of a clinical diagnosis identifying autism or not.

If the assessment showed only a low probability then disclosure becomes unnecessary (Nothing to declare here, move along please...) if it does point to Autism then I see the following as proper disclosure.
1. Back to the people to whom I had disclosed my suspicions. Not least to thank them for their feedback which had informed my thinking.
2. Look at any Serious matters in the workplace and then make a judgement call whether to disclose or not. Plrobsbly would not disclose in present circumstances as i get my work done well, I seem to have the confidence of other staff, line managers and the departments who use the technical services we provide.
3. Close Bio family. Again probably not. We are not one of those families always in each others pockets, we all seem to plod along pretty self contained.

Circumstances where I would consider an "Altruistic" disclosure : Any situation where Autism being associated with me would challenge negative views of the Autism spectrum, where it would increase others' understanding, where it would raise the expectations people might have of someone on the spectrum.

Before DX:
(wife, after reading the list of symptoms): "huh, well that explains a lot" She's been HUGELY supportive throughout the whole DX thing (this is the lady whose pet nickname for me was Martian)

The psychiatrist who eventually referred me to a psychologist for testing started speaking to me very slowly, as though I had a low IQ, when I told her that I thought I had autism. I did what I normally do in those situations, which is to throw a lot of long words at her and bring up several scholarly scientific articles (I call it "Throwing the Thesaurus"). I love the open-mouthed stare I get when I blow apart their nasty prejudices.

After DX:
(several friends): "I never would have guessed! You don't seem like you have Asperger's!" (Not sure whether to take it as a compliment or an insult)

(boss, when asked for disability accommodations): just got kind of a tense stare, like maybe she thought I was going to be trouble. Still haven't gotten the accommodations, 10 months later.

(new psychiatrist, when i switched insurance plans) (after a 10 minute interview): "You can't have autism! You have a spouse, a job, and don't talk in that weird way!" He blamed my symptoms on junk food and alcohol (which is about 6 drinks a month). Idiot. I still joke to my wife, "can I have some Fritos? It might make me more autistic!"