Disclosing new autism diagnosis - when? - to whom?

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CloudSea
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20 Dec 2022, 6:36 am

Hi all.

So I've finally been diagnosed with autism (at age 46). Still processing this...it does explain a lot.

I guess my question is, when should I disclose to people that I'm autistic? Does anyone have any advice? Of course, some people I'll never disclose to (i.e. people who I guess would never understand and/or judge me).

Has anyone actually found it easier to connect (however fleetingly) with some people by disclosing that they are autistic? Like many of you, connecting with most people in a deep manner has been something that has eluded me, especially in later life, somehow. I think my difficulty connecting was the deciding factor for my psychologist advising me to get assessed. (Hats off to her - she was onto something!)

If it helps, I can do the small talk (I even enjoy it(!)). I'm actually quite interested in other people (possibly as a walking bunch of facts about themselves sometimes :lol: ). It's the eye contact that I find uncomfortable.

If I'm ultimately confined to making friends with other autistic people, so be it. There are worse fates :D

Thanks


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kraftiekortie
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20 Dec 2022, 7:33 am

You don’t HAVE to disclose your autism diagnosis to ANYONE.

Autism is not a contagious disease.

If you want, of course you could disclose this to people close to you. Some might be ignorant, and not understand, though.



timf
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20 Dec 2022, 7:57 am

You might want to err on the side of caution. You might find that rather than using an "autism" label, you may satisfactorily explain things in terms of effect.

For example,
"You have to excuse me, sometimes I get too focused."
"Is it OK to turn off some of the lights, sometimes it gets too bright for me. I think I might be part vampire."
"I am a little awkward in social situations. By the time I think of something to say, everyone else has moved on to a new topic."

Classical autism referred to children who had brain malformation or damage that seldom made it to adulthood. Many have seen the pictures of them rocking back and forth unreachable by anyone else. I find it offensive to be thrown into this category by those seeking to explain neurological variants in terms of defect and damage.



kraftiekortie
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20 Dec 2022, 9:09 am

Yep....as Tim says, it's better to convey things that ALL humans exhibit (like "too much focus on one thing"), rather than "disclose" that you have autism.

Autistic folks tend to have "too much focus on one thing" more often, and more intense, than NT people-----but NT people sometimes exhibit this manifestation, too.



IsabellaLinton
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20 Dec 2022, 9:49 am

I wouldn't feel ashamed about disclosure.
This is a big moment in your life and it represents positive change.

Wait a while so you can savour the moment yourself.
Find a few articles you can link to people who might want more information.

Then, it's up to you who to tell.
My threshold was: whether I'd normally tell that person my medical diagnoses.

Most people will be polite and not ask many questions.
Some people don't know what to say because they assume we'd be upset.
You can help them a bit by saying "This is something I'm happy about .... "


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kraftiekortie
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20 Dec 2022, 9:54 am

I'm certainly not AGAINST disclosure....all I'm saying is that you are not OBLIGATED to disclose.



naturalplastic
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20 Dec 2022, 10:22 am

Well...disclose to mom and dad (if they are both still alive), and siblings. And your 'significant other' if you have one. Best bud maybe.

Absolutely disclose to the social workers trying to help you find a better job, or whatever, if you getting that kind of help.

But basically there is no reason to tell anyone unless you have to something to gain by disclosing (like with any above social workers, or maybe to doctors in a hospital if you get hospitalized even non mental medical reasons- you hafta to fill out paperwork to be admitted, in the list of medical conditions you might as well list austism). I have never told my employer (though I dont go out of my to conceal it either) because I worked with them for 15 years before I even got diagnosed, and there is no particular reason to tell them (dont have any particular autism related accommodations I need to ask of them- or not so far).



IsabellaLinton
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20 Dec 2022, 10:39 am

I didn't tell my mother since we don't talk about private / emotional matters.
My daughter told her recently (it's been almost 5 years).
Her response was to gaslight us and use the r word.
Joke's on her, because she's almost certainly autistic too.


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20 Dec 2022, 10:55 am

Your friends and family probably already think you're odd. If you are doing OK in life and you play the Autism down then, with them, it will probably just be trivia.

Assuming they are nice people.


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ASPartOfMe
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20 Dec 2022, 12:23 pm

I have been reading about how people react to disclosure for over nine years and there is no one way people react, it truly runs the gamut. Everything from “Of course, we’ve known it for years”, to denial, to Don’t label yourself, use it as a crutch, to accusations of attention seeking, to it’s a fake or overhyped disease.

As far as significant others and close family goes, the basis for such a close relationship needs to be trust. It might be a shock to them, they might need time to deal with it. Your family will always be your family but if your significant other can’t accept an important thing about you that is a big sign the relationship is not solid.

The thing about parents is they grew up in at a time when attitudes were very different. I am 65 years old. When we grew up there still was stigmas towards mental illness and seeing a “shrink”. The attitude was everybody has problems, one has to figure them out and deal with them without burdening others with them. Many (Not all) of us older people are unable or unwilling to adjust our thinking. Being an adult means that at times you have to do things that are best for you that your parents reject. That does not make their rejection any less painful.

As far as work goes that is tricky also. There are laws against discrimination towards the disabled which autistics qualify as well as requirements for providing accommodations. Some employers are accommodating, they may have autistic family members, there is a growing belief that some autistic traits make for productive employees. On the other hand some employers only see the money and time needed for accommodations and this person may end up suing me for discrimination. They find legal reasons not to hire or fire autistics.

For acquaintance type people not really close to you the “disclose the traits” timf talked is a good strategy.

I know as autistics we often need clear basic choices. Unfortunately choosing whether to disclose is anything but that. What it boils down to it is situational you have make a judgement and hope for the best. Good luck and welcome to wrong planet.


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20 Dec 2022, 2:47 pm

I disclose all the time to everyone. The responses I get are extremely varied. The reason I disclose to everyone is that it is very important for me to be able to get whatever accommodations I need, even if it's something like a personal space bubble accommodation or a conversational accommodation or a sensory accommodation. Because I have so many different needs, it's better to let people know that I am Autistic than to try to ask for each thing I need in a format that mentions each individual issue rather than just saying I am Autistic. Otherwise, interactions for me would be like, "I need you to stand further away because I have movement sensitivity, I need you to speak softly because I have auditory sensitivity, I need you to turn the light off because I have light sensitivity, I need you to walk slowly because I have motor skills issues, I need you to...." And it would go on and on and on. But if right off the bat, I just say, I am Autistic, then anything I need doesn't need to be explained in detail.

The other reason that I disclose to everyone is that it is extremely important that people understand that Autism isn't always what they stereotypically think it is. It does not do the Autistic community any favors to think that severely Autistic people who look like me do not exist. That is all that masking accomplishes. And that misunderstanding makes it impossible for us to get the help and services that we need. Society needs to get to a point where no one ever says, "You don't look Autistic," or "You can't possibly be Autistic," anymore. We have to get it out of people's heads that Autism only looks one way. The only way we can do that is by letting people know that we are Autistic even if we "look normal."


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Last edited by skibum on 20 Dec 2022, 3:01 pm, edited 1 time in total.

IsabellaLinton
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20 Dec 2022, 2:53 pm

skibum wrote:
I disclose all the time to everyone. The responses I get are extremely varied. The reason I disclose to everyone is that it is very important for me to be able to get whatever accommodations I need, even if it's something like a personal space bubble accommodation of a conversational accommodation or a sensory accommodation. Because I have so many different needs, it's better to let people know that I am Autistic than to try to ask for each thing I need in a format that mentions each individual issue rather than just saying I am Autistic. Otherwise, interactions for me would be like, "I need you to stand further away because I have movement sensitivity, I need you to speak softly because I have auditory sensitivity, I need you to turn the light off because I have light sensitivity, I need you to walk slowly because I have motor skills issues, I need you to...." And it would go on and on and on. But if right off the bat, I just say, I am Autistic, then anything I need doesn't need to be explained in detail.

The other reason that I disclose to everyone is that it is extremely important that people understand that Autism isn't always what they stereotypically think it is. It does not do the Autistic community any favors to think that severely Autistic people who look like me do not exist. That is all that masking accomplishes. And that misunderstanding makes it impossible for us to get the help and services that we need. Society needs to get to a point where no one ever says, "You don't look Autistic," or "You can't possibly be Autistic," anymore. We have to get it out of people's heads that Autism only looks one way. The only way we can do that is by letting people know that we are Autistic even if we "look normal."


I agree with you 100% on this.
I told my partner on our first date.
I've since told his family.
I don't go out much to interact with other people, except for doctors.
I say it on phone calls for customer service, or when service people come to the house.

I've never understood the reasons some people have for being ashamed.
We will never break the cycle of ignorance or intolerance unless we speak up.

My mother is a special case since our relationship is very awkward.


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20 Dec 2022, 3:18 pm

ASPartOfMe wrote:
For acquaintance type people not really close to you the “disclose the traits” timf talked is a good strategy.
Maybe even with folk that are closer than acquaintances? If they don't know much about Autism then they still won't know what to expect even after you've told them you're Autistic.

Before 1994 "Autism" meant classic Autism and there was no "Asperger's Syndrome"; from 1994 to 2013 there was "Autism" and there was a separate "Asperger's Syndrome"; and only since 2013 is there a combined Autism Spectrum...which might seem like some newfangled thingy to some senior citizens. When I got my diagnosis in 2019 my Dad was 89...and he was completely disinterested...but then my diagnosis wasn't even even in the books until he was in his 80s!

skibum wrote:
The other reason that I disclose to everyone is that it is extremely important that people understand that Autism isn't always what they stereotypically think it is.
My Autism severity is at the very mild end of the Spectrum. Now that we know what to look for my bride and I can clearly see my Autistic traits—which over the decades have probably convinced many people I was "weird", "odd", or "quirky". I was quite independent but apparently kind of strange (when my bride first visited my home she said her first reaction was "Does anyone live here?!" 8O ).

I did not get my diagnosis until right before the Pandemic and, like a good Introvert, I've been using the Pandemic as an excuse to stay home as much as possible, so me and my diagnosis haven't gotten out much. But, I'm inclined to believe that when I do get out I should be sort of open about my diagnosis. It would be rare that I was seeking accommodation, rather I'd be seeking toleration (for my quirks) and trying to spread the message that Autistics are all different.

I hope folk won't mind someone trying to spread the "If you've met one Autistic you've met one Autistic" message.


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Silence23
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20 Dec 2022, 3:32 pm

Just tell those who need to know, and maybe those who could be confused about your behaviours. It may make them feel more comfortable when they know you're autistic. Or you wear an autism shirt to show everyone you have superpowers :) Doesn't matter

You're not confined to having autistic friends. Friendships can work well with all kinds of people.



IsabellaLinton
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20 Dec 2022, 3:32 pm

I have an autism shirt! :P


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20 Dec 2022, 7:52 pm

When dealing with equals, mostly I only disclose my ASD to other ASD people, which isn't that many in "real life." I've also told a very small number of (apparent) NTs but only when their behaviour has shown me that they're reasonably supportive types and not very judgemental. Otherwise I feel safer winging it. Beyond the kinds of people I've mentioned, I'd expect they'd just be suspicious that I was trying to use it as an excuse or that they wouldn't know enough about the condition to have a clue what to do with the information.

I tried telling airport staff a couple of times but all I got was the offer of a wheelchair. Once or twice I've mentioned in that I've got a cognitive disability when making a complaint or trying to get co-operation from service providers in writing (e.g. electricity supplier), in the hope that they'll be a bit more scared of fobbing me off. And I told my employer to discourage him from trying to make me do Aspie-unfriendly work. It was a university that trumpets its commitment to political correctness.

My GP knows but hasn't made any accommodations, despite a diagnostician writing to the practice to itemise possible adjustments. I hardly ever visit my GP anyway, so I haven't pursued the matter, and I've no idea what adjustments the letter contained. I only know that the diagnostician told me it had been sent.

And I don't know what adjustments I'd ask for from anybody. Nobody's ever asked what I'd like. I was diagnosed late in life so I'm used to depending on my own resources when dealing with people.