Disclosing autism

[Ban]

I am trying to figure out how "safe" it is to disclose autism. So far I have not told many except those close to me. There have been times when the situation/conversation would have made it relevant to bring up and I would want to if I thought it would be received okay.

My main question is what do people think when you tell them?
What assumptions are projected onto us?

 

[Raggamuffin]

It really depends upon the situation. There's too many variables to really say how people might react. Would you be revealing it during times of misunderstanding or friction etc?

There's also the fact that people might not be any the wiser if you were to say you had autism. Only a few people who I confided in knew anything about autism.

For those who didn't know - revealing autism didn't really help me feel understood. In fact, I had to do a lot more explaining and go out of my way to make myself understood. Even then, it's a lot for some people to process. You might then encounter people normalising your struggles and claiming that everyone has such issues. Which can be true, but obviously not to the extent that those with disorders encounter these issues.

Do you respect them? Will they respect you? I think that's a good way to judge. Go with your gut etc. But of course that's no way to predict how people will react. It'd be nice to have a clear cut "do's" and "don'ts" list. But unfortunately we don't have a rulebook for this life, well - unless you're religious.

Ed

 

[Gerald Wilgus]

My close friends suspected even before I got diagnosed. One couple have a grandson who is autistic. When I discussed my diagnosiswith my friends they were accepting and understanding. But then, this group has been together for nearly 40 years. Only one other person besides my spouse I have shared with and from his past and his people skills I thought it was OK to share and I was right. From these experiences and feeling self assured as I help out in my community, I do not hide things, but I don't wear my autism on my sleeve..

 

[Neonatal RRT]

I am trying to figure out how "safe" it is to disclose autism. So far I have not told many except those close to me. There have been times when the situation/conversation would have made it relevant to bring up and I would want to if I thought it would be received okay.

My main question is what do people think when you tell them?
What assumptions are projected onto us?

I think you already have some sense for this, but the following has been my experience:
1. Most people know next to nothing about autism,...and what they think they know is probably wrong.
2. Most people have some sense of what a severely affected small child may present like. However, since the teenage and adult population is not presented in most media coverage, most neurotypicals loose perspective and ultimately forget that many of us grow up, mature, learn to mask, and ultimately learn to cope with our sensory, intellectual, and communication issues. Regardless,...most have no idea that we are interacting with them relatively normally,...and having to mentally deal with all these issues. Most have no sense of perception and perspective,...so it can be difficult for both of us.
3. Most people either: (1) don't react except for a second of uncomfortable silence (2) give you the "well-meaning" comments like, "You must be high-functioning" or some other sort of misguided response (3) the denial, the "It's just a label",...because these individuals have already made their "moral diagnosis" of you and are not willing to entertain an "excuse".
4. For those of us that are relatively intelligent compared to our neurotypical peers,...they attribute the autism towards our intelligence.
5. For those of us that have more difficulties with controlling our "stimming" behaviors, are having verbal communication issues, are having physical dexterity and body language issues,...they might not be thinking autism, but rather some form of "mental retardation" when there may not be.

Ultimately, there are times when it is quite appropriate and even needed to disclose your autism. There will be times when family is not going to be accepting. No advice here. You know your people and situation. I have people in my life that simply don't know, and others in which I am quite open with. Personally, I am in a position professionally of being a senior member, a mentor, an educator,...so for me, I think it is important for people know,...primarily to undo some preconceived ideas of autism, and two, to recognize that sometimes there may be some communication issues that need consideration. I have had more negative issues with disclosure with my siblings and parents,...the few that I have disclosed to it didn't turn out well.

 

[Kalinychta]

I told my friends and family about my diagnosis, and I told my doctors. Other than that, I don’t see why anyone else needs to know.

 

[Ban]

Thanks for the replies, what I'm getting from @Raggamuffin and @Neonatal RRT is that alot of people don't have enough knowledge going into it that using the word would actually explain that much. I actually don't think I would deal very well with the potential reactions described in your posts. I am very used to being misunderstood but I think that if I was to open up and then be misunderstood even more that would be quite upsetting for me.
In terms of people where there is mutual respect I would imagine I would have the confidence that they would want to understand enough that I would trust them to give it a good go. The kind of situations I was talking about was things like autism coming up in conversation (nothing to do with me) and then me feeling weird about not mentioning my experience. Another one is people tend to notice I am weird in some sort of way and sometimes bring it up when I'm saying something out with the ordinary and I feel like there half asking a question and the answer would really be that I'm autistic. I reckon from the responses described these two situations might not be with people close enough where there isn't that mutual respect there to make it worthwhile.

 

[OkRad]

Never. People sniff it out anyway. There are only so many euphemisms one can concoct.

 

[Neonatal RRT]

alot of people don't have enough knowledge going into it that using the word would actually explain that much.

YES,...accurately said. Keep in mind I work at one of the largest Children's Hospitals in the world,...we deal with autistic children all the time. When I tell some of my co-workers and students that I am autistic, I definitely get a pause, a look, and then silence,...like their brain cannot wrap their mind around it. It's like they see the children,...they see me,...but then cannot imagine that there are adults with autism. Furthermore, according to Dr. Tony Attwood, a well-known psychologist specializing in autism,...the number one field for autistics,...health care. There are at least two other autistics in my respiratory care department, alone. I know they're autistic,...I recognize a "brother from a different mother" when I see one,...but I think many of our co-workers have no clue. Over the years, I have worked very closely with a pediatric cardiac surgeon, a pediatric ophthalmologist, and a pediatric neurosurgeon who were quite autistic,...to the point where they needed a nurse assistant to keep them pointed in the right direction,...but yet, somehow quite extraordinarily brilliant at their professions. I connected with them, in many respects, because I spoke "their language" and communicated very well with them, both professionally and personally,...yet at the time, I didn't realize I was autistic, myself. In retrospect, it explains quite a bit.

I think,...I am hoping,...the 2020's may be our decade. There are enough teens and young adults in our world to make some change. As much as some love to tease the younger generations,...they generally are quite open to diversity,...and are at the voting booths. It sort of reminds be of the 1980's when the gay and lesbian population began "outing" themselves,...similar discussions were had,...similar negative reactions,...and it was a "big deal" to find out that one of your co-workers was gay or lesbian. Seriously, by the 2000's, nobody gave it a thought that you had at least 5-10% of your co-workers that were openly gay and lesbian,...frankly, no one cared,...at least at our hospital.

 

[Gerald Wilgus]

Thanks for the replies, what I'm getting from @Raggamuffin and @Neonatal RRT is that alot of people don't have enough knowledge going into it that using the word would actually explain that much. I actually don't think I would deal very well with the potential reactions described in your posts. I am very used to being misunderstood but I think that if I was to open up and then be misunderstood even more that would be quite upsetting for me.
In terms of people where there is mutual respect I would imagine I would have the confidence that they would want to understand enough that I would trust them to give it a good go. The kind of situations I was talking about was things like autism coming up in conversation (nothing to do with me) and then me feeling weird about not mentioning my experience. Another one is people tend to notice I am weird in some sort of way and sometimes bring it up when I'm saying something out with the ordinary and I feel like there half asking a question and the answer would really be that I'm autistic. I reckon from the responses described these two situations might not be with people close enough where there isn't that mutual respect there to make it worthwhile.

You have gotten that right about mutual respect. Identifying accepting people was one thing that I learned from the negative experiences I had. I have no room in my life for those not able to accept me and found ways to figure out from values and interests those likely to. Today while hiking with a couple of guys from the bike club, one an excellent fisherman, we were joking with each other. He had been fishing in Argentina, and I thought it funny going after fish in the land of beef and red wine and I had mentioned my upcoming trip to Thailand and he knows me well enough to joke about the sex tourism, especially at my age, confident that I would not take it negatively (as I will be good - my spouse is the only one for me). We can be frank with each other and I guess that is a good thing and shows a level of comfort with each other.

 

[Gerald Wilgus]

It sort of reminds be of the 1980's when the gay and lesbian population began "outing"

By the 80s I was emotionally mature enough to be accepting, it was no stretch for me to accept differences from the norm after what I went through. My neice came out three years ago and I love her as a daughter. Isn't an accepting world wonderful?

 

[MyLifeAsAnAspie]

I will be retiring soon and this discussion has given me an idea to try to explain my self to coworkers who know me well, but none of whom I have disclosed to. I don't see any reason to use either of the "A" words to do that. Why not just explain the traits that you feel effects your relationship to them. Not that I have thought this out yet, but I have a little time to play with the idea. Anyone who understands adult ASD and you disclose the right trait or enough traits will probably think "I was right he is ASD". I don't know how many might come out say something like that. I don't know how the ASD clueless ones will react. Hopefully something like "I thought he was {fill in the blank}, but it turns out he just has something called 'poor executive function'", for example.
Any thoughts on this idea?

 

[Owliet]

I mentioned this in a similar thread quite recently but I rarely tell anyone these days. You either get out right rejected or worse...they treat you like you are a child or a person who has limited intelligence and functionality. Unfortunately, a lot of people are still not understanding what ASD is or have preconceptions in their minds thanks to how media has portrayed ASD or by certain people who are or claim to be on the spectrum who use it as an excuse for their terrible behavior and actions....

I have told family members and, when I’ve had them, friends that I’m ASD and it has ranged from complete denial, well meaning “lots of others have similar experiences and it’s just a label don’t let it define you” and “you must be very mild or you’re at least HFA” to “ok” or just open ridicule because they hate anything to do with ASD. Even my own mother found it difficult to accept at first and treated me horribly for a few years, which she now claims she never did or that how I found out because she wanted me to not know *i was diagnosed as a teenager *, was her screaming at me that I had ASD and I would never be normal. Now it is different but I will never forget the early days because it didn’t help me to accept it for myself. Also, My aunt who is one of those extreme religious people, said to me that I didn’t have it but then one day talked to her friend whilst I was in another room and told her friend that that’s the niece who is autistic. To which they had a conversation about how hard it was to be around me and how much of a saint my aunt was for putting up with me — whilst that is offensive and my aunt pretty much proved even further that she’s a terrible person, it’s kind of funny that she made my diagnosis about herself especially considering that at the time I had mellowed out and had learnt strategies to cope with some issues which she had never had witnessed anything negative....and she wonders why I don’t talk to her.

so, I am careful with who I tell.

 

[Ban]

I mentioned this in a similar thread quite recently but I rarely tell anyone these days. You either get out right rejected or worse...they treat you like you are a child or a person who has limited intelligence and functionality. Unfortunately, a lot of people are still not understanding what ASD is or have preconceptions in their minds thanks to how media has portrayed ASD or by certain people who are or claim to be on the spectrum who use it as an excuse for their terrible behavior and actions....

I have told family members and, when I’ve had them, friends that I’m ASD and it has ranged from complete denial, well meaning “lots of others have similar experiences and it’s just a label don’t let it define you” and “you must be very mild or you’re at least HFA” to “ok” or just open ridicule because they hate anything to do with ASD. Even my own mother found it difficult to accept at first and treated me horribly for a few years, which she now claims she never did or that how I found out because she wanted me to not know *i was diagnosed as a teenager *, was her screaming at me that I had ASD and I would never be normal. Now it is different but I will never forget the early days because it didn’t help me to accept it for myself. Also, My aunt who is one of those extreme religious people, said to me that I didn’t have it but then one day talked to her friend whilst I was in another room and told her friend that that’s the niece who is autistic. To which they had a conversation about how hard it was to be around me and how much of a saint my aunt was for putting up with me — whilst that is offensive and my aunt pretty much proved even further that she’s a terrible person, it’s kind of funny that she made my diagnosis about herself especially considering that at the time I had mellowed out and had learnt strategies to cope with some issues which she had never had witnessed anything negative....and she wonders why I don’t talk to her.

so, I am careful with who I tell.

Wow that sounds really difficult, as if it isn't confusing enough to come to an acceptance and understanding for yourself it doesn't sound like they made it any easier for you. I can see why you would be careful about who you tell.

 

[MyLifeAsAnAspie]

Even my own mother found it difficult to accept at first and treated me horribly for a few years, which she now claims she never did or that how I found out because she wanted me to not know *i was diagnosed as a teenager *, was her screaming at me that I had ASD and I would never be normal. Now it is different but I will never forget the early days because it didn’t help me to accept it for myself. Also, My aunt who is one of those extreme religious people, said to me that I didn’t have it but then one day talked to her friend whilst I was in another room and told her friend that that’s the niece who is autistic. To which they had a conversation about how hard it was to be around me and how much of a saint my aunt was for putting up with me — whilst that is offensive and my aunt pretty much proved even further that she’s a terrible person, it’s kind of funny that she made my diagnosis about herself especially considering that at the time I had mellowed out and had learnt strategies to cope with some issues which she had never had witnessed anything negative....and she wonders why I don’t talk to her.

so, I am careful with who I tell.

Unfortunately, I think it was inevitable that there would so much misunderstanding about what ASD is and what it means to the autistic and their family. Hopefully, autistic adults can work to move society away from the dark ages of ASD. Think about Autism Speaks, just 10 years ago they thought it was fine to have such a dim view of ASD. They have changed and they claim they are all about helping us and have dropped the ridiculous idea of a "cure".

Trump will never be "normal" either but some people want him to be president . My point being that many people extraordinary things with a non-NT mind. Luckily we won't be doing what he has done .