Disclosure stories

It’s shocking. I’m so sorry to hear this but sadly I am not surprised. I actually had been recruited for a PhD position and whilst choosing which offer to accept, this one supervisor seemed very supportive and very keen to have me on their team. I had met with them and everyone else multiple times and it seemed like a good fit. I hadn’t mentioned the diagnosis during recruitment process as it didn’t seem hugely relevant but I had friends who previously studied at the university and they said the autism support team was great and encouraged me to reach out. I had had some other health issues related to autism and it was all quite new to me and I was keen to see what support was available so I called the disability team in confidence and asked about support available to see if I should disclose to the university- they said they had specialist autism advisors and strongly encouraged me to disclose to the university, college and my supervisor so that they could draw up a support plan and so that I could access all these resources and get togethers for autistic students. It all sounded very positive so I thought about it and said fine. So I talked to the disability advisor and she drafted a support document to share with relevant people so that everyone was aware of my situation. Just before they circulated it I thought let’s better let my supervisor know too and I just said I was autistic and that I had decided to disclose to university just so that I could access some of resources offered. They seemed fine with it but I actually think it very much changed how I was viewed and treated later on. I can’t prove this but I was essentially pushed out in quite an insidious way and I felt quite discriminated against on multiple levels- it’s difficult to explain all the details but I really regretted ever telling anyone- it can really change how people view and treat you and it’s almost impossible to prove or know whether that is the reason which makes it all the more frustrating. I’m so sorry about your job - it is shocking since you had worked there for so long- it really highlights how the knowledge of diagnosis can shift people’s opinions of someone- hard to understand though- they had years of evidence of your suitability but instead chose to focus on a label they did not understand. Infuriating but I guess it’s just what our society is like. 

Hi, I also got way more cautious about disclosing and now barely tell anyone anymore. I’ve had everything from ‘we are all a little autistic’ to being told it’s just an excuse and I am ruining my life , or people who seemed to take it ok but then proceeded to treat me like I was disabled and discriminated against me and ultimately pushed me out (my previous PhD supervisor). But I also had positive reactions- mostly from friends who turned out to be neurodiverse too!! I’m much more cautious now though and don’t tell people unless I trust them- I have a tendency to overshare sometimes but I am more careful now. What can help is to tell people about traits or things you are experiencing/ need first (or just leave it at that)- especially in work place this is sometimes better than just saying I’m autistic- things like ‘I’m very sensitive to sounds’ or ‘I find changes to my routine difficult and it’s best to avoid unexpected meetings/ plan changes’ etc ‘I find situations with lots of people overwhelming’- sometimes that can be enough or it can actually help to prepare people for when you do tell them as they have already been told about all these traits so it’s a bit easier for them to understand and accept it… 

thank you Phased  and I do like watching the planes go by so that made me smile :-) 

PS researching "negativity bias" might save you some grief if you're not already aware of the concept :-)

There is a story in aviation that there are old pilots and there are brave pilots but there are no old brave pilots.

I still can't resist telling people I'm autistic as for me it was a really great thing to learn.  I meet a substantial number of both pleasant and indifferent/unpleasant people - thing is I reckon these unpleasant people maybe need a bit of time and work to come around and may have even been like that before I told them so what's changed?

Now I have a protected characteristic potentially I am less vulnerable - at least in theory that is...

Thing is having to be one's own best advocate can come with the territory.  As far as my experience goes this takes knowledge, skill, energy, staying power, support when necessary and most of all time to acquire.  These lovely resources are hard to shepherd and hard to resource too perhaps.

Congratulations on getting your metaphorical wings :-) I wish you smooth flying. safe landings and a long and happy flying career AnnieBo !

I was diagnosed ASC in June 6 months after my youngest son. I finally told my partner at the end of August having kept it to myself for reasons I won’t bore everyone with.

As expected this didn’t go down well at all and I feel quite sad and disappointed but I accept that even people close to me are not going to see it the way I do. 

My partner has not even asked to see my report and does not ask me anything about my experiences.

My oldest son had just had a diagnosis of combined ADHD and basically I was told well we know which parent they inherited it from. I was under the impression that a parent with autism cannot genetically pass on ADHD to a child, I may be wrong or misinformed. 

You’ve got to somehow keep making small positive steps about you. I have not been employed by anyone now for over 12 years, everyday I still try something.  

It’s not selfish to focus on yourself at a time like this until you feel more grounded. I am still at this stage currently and feeling extremely sensitive.

It’s kind of awkward having conversations with people who know, while others are around. Because it complicates things, as if they were not complicated enough.

Also because I spend about 90% of my time alone I have a lot of time to think about these things.

If people can’t accept me as I am already they certainly are not going be any more forthcoming. At the same time I can suddenly see a slightly expanded range of differences in people I didn’t before. 

Sometimes it is funny how other people behave towards me, but I am never cynical because I want to make the world better. If I can by changing people’s awareness. This can mean changing their perception of who I am, or what an autistic person can be.

I could treat this (diagnosis day) like a Birthday each year I could celebrate it with me and the open minded people I know.  

Even in the noise, my thoughts are still my own, today I was really struggling to keep the anxiety and stress under control beneath the surface. It felt looks my skin was burning until I got home and no one was looking at me. 

What you know is valuable, don’t let it be undermined by people without sufficient empathy or understanding. By that I mean be very selective who you tell. I have only seen told theew close people and two of them are direct family.

If you feel like you really need to tell someone speak to professional therapist or a Samaritan, until you are certain you can trust someone. 

I'm absolutely sure, if I get diagnosed I will not disclose it to my family (parents and siblings) and hardly to anyone. In my opinion the diagnosis should be for me to get information and support. Otherwise I would treat it as private as my underwears. At work it's a different situation,  my manager suggested I might have mental health issues,  later I told him my therapist suspects autism. He was absolutely fine with it. We have more people with disabilities. For me and my manager this information is important, because he previously wanted to make me his assistant and it actually happened,  but I can't keep up with all this, struggle to shift between tasks etc. So I still have my tasks and my manager is happy with my work, but this information helped shape the role i fit best. I was actually very surprised how simply he reacted, saying its nothing bad, if I have any problems, I can speak to him. And others don't know, they laugh sometimes that im weird, but I'm used to it. I can say I'm lucky in this situation. I think I shared some info with him, because he mentioned that i might have mental health issues, which, as people say, is pretty visible. If I get diagnosed with something else instead of autism, then I will update. My manager is training another colleague to be his assistant and I'm happy with this choice because it's not me and because I think the colleague is a good fit for this position. 

I've had a mixture:

1. So what, nothing has changed.
2. Not a surprise. So what are you going to do.
3. I thought you knew.
4. Ok (most common), then onto the next thing
5. But there's nothing wrong with you.
6. Worst one, ignored my email after years of contact.
7. GP: we need a copy of the report (which they've filed and ignored)

In general it is mostly mild interest or indifference.

People don't know what to say. And to be fair what do you want them to say? To most you still, look, sound and behave the same. The label does not change anything for them.

Maybe I have largely avoided the negativity because quite a few have children that are, or know people. Perhaps it's the industry I work in.

AnnieBo said:

I'm having a pause on the disclosures while I have a think! Anyone got a story to share?

Long story short, my wife couldn't accept that I was "mentally ill" (her term) and even after therapy she could not accept me even after 24 years of being happily married.

Work sidelined me from a lot of high profile customer support meetings (I used to be there for when chairmen of lots of organisations attended our offices for strategy or emergency meetings - our company was their controlling entity) as they didn't someone with a mental health condition endangering the reputation of the company.

I was also moved to a consultant role (better pay), moved much more behind the scenes then the contract mysteriously was cancelled a year later.

Statt didn't know what autism was in any meaningful way when I told some of them and preferred to avoid me when before I had been just another one of the team.

My family don't want to know, especially as I pointed out it is genetic and I can clearly identify autistic traits in them.

Overall, disclosure was a big negative for me.

Think very carefully on what and who to share it with. be it family or friends or at work. Remember there is a huge amount of knowledge about autism in the NT population. Everyone will have their unconscious bias and perhaps stereotypical assumptions and will not always react in the way you might wish.

I disclosed to my management hoping for support for my years of struggles but what I received was questions regarding my suitability to be in the role I was and led to me being moved out from the department and a 30 odd year career effectively ended. I wish I could have been more upbeat but the enormity of the situation has taken a great toll on my enthusiasm for anything.