What’s your experience coming out as autistic? Mine wasn’t what I had hoped for:/

[Soniadvn]

Hi! I’ve just been recently diagnosed with AuDHD at 25.

Decided to excitedly break the news to everyone, and unexpectedly received blank, confused stares. So I set out on my own journey to get help. In the end people “try” to be supportive while questioning some of my decisions. These include:
- going to speech therapist
- sending resources to help them communicate with me

They told me to stop trying to make my environment “safe” and only people similar to me will understand. Thoughts?

 

[Neonatal RRT]

Hi! I’ve just been recently diagnosed with AuDHD at 25.

Decided to excitedly break the news to everyone, and unexpectedly received blank, confused stares. So I set out on my own journey to get help. In the end people “try” to be supportive while questioning some of my decisions. These include:
- going to speech therapist
- sending resources to help them communicate with me

They told me to stop trying to make my environment “safe” and only people similar to me will understand. Thoughts?

Most people have no understanding of adult autism, even people in healthcare. If they have any understanding, at all, it's what they see in the media with video clips of severely affected small children.

 

[Angular Chap]

Hello and welcome. Thank you for sharing this part of your journey.

I just came out to my close family myself last month. It took me 4 tries.

I had originally planned to come out on my birthday, I thought for many weeks on what to say, but when I tried to steer the conversation towards autism during my birthday dinner, I was ignored and talked over.

I tried again a few hours later to slowly approach the subject subtly, but I was dismissed and invalidated.

It took me many months to try again. The 3rd time I was again invalidated "But you're not autistic though....?" was all I got. The day after, I finally made an appointment with my doctor to get an official diagnosis and the day after that I just bluntly came out and said I had an appointment the next week. They seemed slightly taken aback, but they instantly accepted me and I felt relieved. All it took for the first stage of acceptance was making the appointment. I still don't have an official diagnosis yet, but my doctor saw fit to refer me for one and I'm on the waiting list.

I still have a way to go with full acceptance however. My strongest traits are still invalidated on a daily basis. "But you didn't have behavioural problems as a child" and "It's just a confidence thing" are the top 2 ways I get invalidated so far. I'm still working on teaching people by linking them to official NHS information about autism.

They told me to stop trying to make my environment “safe”

This is just plain wrong and highly invalidating. We absolutely need an environment which is safe by our own definitions and consistent access to one for proper mental functioning, both day to day and long term.

only people similar to me will understand.

This may be somewhat true for some people, but it still feels invalidating and dismissive when people put it like that. My go to phrase is "You don't necessarily need to understand, but please just listen and accept."

All the best to you as you continue on your journey.

 

[Soniadvn]

Hello and welcome. Thank you for sharing this part of your journey.

I just came out to my close family myself last month. It took me 4 tries.

I had originally planned to come out on my birthday, I thought for many weeks on what to say, but when I tried to steer the conversation towards autism during my birthday dinner, I was ignored and talked over.

I tried again a few hours later to slowly approach the subject subtly, but I was dismissed and invalidated.

It took me many months to try again. The 3rd time I was again invalidated "But you're not autistic though....?" was all I got. The day after, I finally made an appointment with my doctor to get an official diagnosis and the day after that I just bluntly came out and said I had an appointment the next week. They seemed slightly taken aback, but they instantly accepted me and I felt relieved. All it took for the first stage of acceptance was making the appointment. I still don't have an official diagnosis yet, but my doctor saw fit to refer me for one and I'm on the waiting list.

I still have a way to go with full acceptance however. My strongest traits are still invalidated on a daily basis. "But you didn't have behavioural problems as a child" and "It's just a confidence thing" are the top 2 ways I get invalidated so far. I'm still working on teaching people by linking them to official NHS information about autism.


This is just plain wrong and highly invalidating. We absolutely need an environment which is safe by our own definitions and consistent access to one for proper mental functioning, both day to day and long term.


This may be somewhat true for some people, but it still feels invalidating and dismissive when people put it like that. My go to phrase is "You don't necessarily need to understand, but please just listen and accept."

All the best to you as you continue on your journey.

Thank you! This was really helpful. Weirdly enough my journey to acceptance was way before my diagnosis. It was more like closure in the end. Hopefully you will meet good experts in your diagnosis journey

 

[Neonatal RRT]

As my brother-in-law recently said to me when I came out to him, "I've heard of autism, but I have no idea what that means." Which was probably the most open, honest, response that I have received from anyone. Like you said, most of the time it's the blank stare.

Just be careful who you come out to. Even close family can be quite defensive, nasty, and reject your diagnosis as merely a "label" and an "identity" to be disregarded.

 

[Soniadvn]

As my brother-in-law recently said to me when I came out to him, "I've heard of autism, but I have no idea what that means." Which was probably the most open, honest, response that I have received from anyone. Like you said, most of the time it's the blank stare.

Just be careful who you come out to. Even close family can be quite defensive, nasty, and reject your diagnosis as merely a "label" and an "identity" to be disregarded.

That such a good response! Some people are too scared to say that, even though we really appreciate the honesty

 

[Progster]

I haven't had any bad reactions. It's mostly just a piece of information to them. People know that I'm different, but don't know why, and this is an explanation. But I don't think people care that much. I don't normally tell people unless I think they need to know, it's a personal thing.

 

[elgat0verde]

I haven't told anyone, and probably I won't tell people in my family.

For me personally was very good in a way, now I understand myself more and understand a lot of situations in my life and have started forgiving myself.

It has brought a lot of peace to myself, I feel now that I've found who I am and am working hard on accepting it and embracing it.

Much love to you

 

[Rodafina]

It has been more useful for me to share the way that I experience the world. Instead of saying, something like “I am autistic,” I can explain that sunlight in my face overwhelms me, and I am not able to think straight anymore. Or I can say, “I’m trying to listen to what you’re saying, but there are so many things going on in this room, it is hard for me to take in what you’re saying.”

I guess it’s my way of trying to find a common language. Only other adults with autism seem to fully understand what that means in my experience, and so people in my life with less familiarity about it need language that they can relate to. It is not really fair for me to put the onus on them to learn as much about it as they can about autism. I wish that they would (especially my family), but I cannot expect it, so I have to do the explaining to them, one detail at a time.

 

[Shevek]

"Coming out" got the reaction I expected - none. It did give me a lot better perspective on my life, bet didn't evoke any new understanding in others.

 

[Gerald Wilgus]

My friends are a quirky bunch and I suspect a couple have some autistic traits. When I came out to them it was: "So, what else is new?"

edited - I am proud of my autism. It has allowed me to accomplish many good things and surmount difficulties. I am the me that I like and I will not be ashamed of a unique neurology.

 

[Yeshuasdaughter]

You don't have to tell people at all. Maybe just medical professionals and close relatives. But even then, your private business is your business.

 

[Ken]

Welcome to the forum!!

Upon diagnosis I wanted to tell everyone. I was actually elated and wanted everyone to know. Then I discovered that no one really knows anything about autism. They all just think it is a mental disease. Many thought it could be cured or I could be talked out of it in therapy. Professionals only know symptoms, but have no idea what it is like for the autistic. So, I quickly gave up on that. I do not consider it a secret, but I don't tell everyone. I do explain relevant issues like social anxiety or sensory issues. Sometimes I explain that those are elements of autism. I usually get nods and blank faces with blinking eyes. Sometimes that helps, but few actually comply or understand.

 

[AspieChris]

Basically everyone either says the words or wants to: “But you seem so normal….”

I self diagnosed at 35. My wife was the one who first figured it out because I was struggling horribly with small stuff, yet kicking ass at huge things every day. She was the person who said “ Oh my God…. That’s you!”

I had disowned my whole family several years earlier. So, basically, I had nobody to ‘come out’ to.

I’m very high functioning. I hide it so well that nobody has ever noticed anything off about me but her. When I do tell someone who has known me for a while, they almost always stare at me like there’s a punchline coming. But I’m very well known to be intelligent, honest, and hard working. So… they stare in disbelief because most people THINK they understand Autism from watching Rainman (movie) or because they know someone with a severely autistic child, but hold back the urge to tell me I’m wrong.

I learned pretty quickly that telling someone won’t change the way I’m treated. But it helps for them to know in advance so that if I say I can’t do something today because I’m autistic, I’m not just making up an excuse on the fly. Nobody really understands, but it has helped me to figure out who actually cares about me. My family did not.

 

[Tom]

I've kept it pretty close, only telling closest family and friends and usually only others I think might also be on the spectrum or of a mindset I think will understand.

The world at large mostly just knows stereotypes and won't feel any need to change how it behaves to match your preferences. And some hold negative views on autism, so it may be best to avoid addressing it publically. Unless it is in your goals in an activism sort of way, aware of the pitfalls but wanting to press on anyways.

 

[Darkkin]

Wanting validation for one's emotions is for lack of a better word, a valid expectation. But the nature of autism itself is unique in that it is the neurobiological process by which we interpret our world. It is not an easy concept to understand.

It is the difference between one's neurotype and a mental illness like depression. Most people function under the misconception that autism is a form of mental illness, which it is not. The disease mentality is one of the single biggest challenges the autistic community encounters.

 

[Forest Cat]

I didn't really 'come out', didn't have a reason to talk about it. My mother and sister was involved in the process of getting diagnosed, they were not surprised. I think the best reaction came from a friend I have known since we were 13. I mentioned it to him, he then looked at me and said "you think it's news that something is wrong with you? I have told you that since the 7th grade!". He's a funny guy.

I'm sorry to hear you had some problems with it, good luck with everything.

 

[AspieChris]

Hi! I’ve just been recently diagnosed with AuDHD at 25.

Decided to excitedly break the news to everyone, and unexpectedly received blank, confused stares. So I set out on my own journey to get help. In the end people “try” to be supportive while questioning some of my decisions. These include:
- going to speech therapist
- sending resources to help them communicate with me

They told me to stop trying to make my environment “safe” and only people similar to me will understand. Thoughts?

Quick question?

Were you hoping to change everyone else by ‘coming out’?

I ask because I sometimes wish that my childhood had been different, and occasionally I catch myself fantasizing that if I had been diagnosed when I was young…. everything would have changed and I would be at peace today. I recognize that it’s ludicrous, but my fantasy is that my parents would have changed (not me, I’m perfect of course), and I would have had a happy childhood.

So I guess my question is whether or not you expected to be treated differently by your friends and family after your announcement? If not then what was your goal, or have you really thought about this aspect of the whole situation?

No judgment here. Just curious.

 

[Judge]

A hard lesson for most, if not all of us on the spectrum:

1) There will be a very few who will want to understand and succeed.

2) There will be a few more who will want to understand, but fail in trying.

3) Leaving the vast majority to default to a notion of expecting- even demanding that you must conform to their standard of behavior and thought process.

In as much as it is always a huge revelation for us, it doesn't translate well to everyone else. Where even those perceived within your closest social orbit will not likely understand. Whether friends, relatives or even lovers. In essence, be very wary of announcing to much of anyone that you are on the spectrum of autism. In most cases it will not serve you well to do so. But then is it rational to expect 98.2% of society to relate to neurologically relate to us in the first place as a 1.8% neurological minority? - Nope.

Best to keep your autism on a "need-to-know" basis only.