Does anyone else find this tricky?

Very few people understand what goes on in my head to some degree. Only one really understands and nobody really knows. I have told people about my recent diagnosis who have said "don't be silly, you're fine". This is because they do not know what goes on inside and I have done a pretty good job of putting out a confident image. Having said that I wouldn't change who I am. I think I can appreciate the world in a better way and can make a bigger positive difference than most. Therefore there are negatives and positives. Where people talk up the positives, they are simply doing that, because if you align your life in the right way and see things in a positive light, it can all become very positive. At the same time, behind that, those who understand, also understand that it has difficulties. Keep trying to keep positive. It is the answer...

"Well it doesn't have to limit you!" showing a misunderstanding completely as far as I'm concerned.

I understand this entirely. I've recently made a decision to go back to an old employer so I can work from home again, I simply cannot work in an office anymore. I can't lie and so I was very open and honest with the MD and told her I am un-diagnosed, going through diagnosis, but I am 99% sure etc etc. (I have never shared this with anyone outside of my very immediate family so this was huge for me).

At first though I sat in her office and totally froze and was unable to speak. Because of my masking this behaviour took her completely by surprise and she began to really worry about what I was trying to say. Then when I finally uttered the word Asperger's she said "oh, is that it. I thought it was something terrible". In the moment that was almost a nice thing to say and I know her intentions were good.

Actually though, she had just seen the real me for the first time and completely missed the negative effect it has on my life - I'm changing employment because of it for crying out loud! After that came a complete lack of understanding... whilst all the time maintaining that she's 'on my side'. She wanted me to stay and I felt incredibly awkward about how she kept saying that. Apparently I'm making a mistake and will be going backwards in my career. I honestly don't care for a career that will destroy me mentally... I'm leaving to be happy again. There was no understanding of how difficult everyday life is for me. As with all mental health issues, my battles are invisible. 

It does limit me and I'm still learning my limitations and I very much intend to live within those limitations from now on. I've had enough of making myself ill for the sake of people who don't care or even try to understand. 

Yea. It's not just with autism but with a lot of things we've got into this weird culture where we can't say something is a disability or something without people jumping up and down in anger because "It's not a disability," Well yes it is. If something needs to be diagnosed, then there is obviously an impairment problem. 

On the other hand, we have the other extreme where autism is seen as the worst thing in the world as you said. 

it's like everyone has just become more extreme about so many more topics. Either autism is just this thing people get diagnosed with because of 'quirks' etc or it's the wose thing in the world. No in between. 


Personally, I'm so tired of how much autism limits my life, and then the fact that the people who think being autistic is just a 'difference' and not really a disability will say, "Well it doesn't have to limit you!" showing a misunderstanding completely as far as I'm concerned. 

Yes, that is the bottom line really. The very fact that we have a diagnosis means that we have an impairment in functioning.

The truth is even the most brilliant people on the spectrum wouldn't get a diagnosis unless they were seen to be impaired in certain areas.

It's unfortunately a confusing world full of confusing messages and yes I agree, it's confusing.

I'm autistic and I haven't told anyone except my parents because they were required at my assessment. I think if you asked people who know me (acquaintances) then they'd never think of me as having a disability.

If you asked my closet friends then they might think so due to knowing more about my personal circumstances though not my exact diagnosis. They can see that my ability to function is impaired as they spend more time with me or not me as the case may be.

If you asked me then I would say I do have a disability. I have a condition that significant impairs my ability to function.

I would also say though that being autistic means I have traits which are desirable and beneficial.

It's really difficult to explain to others but it's not all good and it's not all bad being autistic.

Mostly days are very difficult for me but I have some incredible achievements which I have no doubt are due to be autistic too.

Today was a sad day for me. Being autistic meant being unable to function and being desperate to get home. It meant needed to nap for 2 hours to recover. It meant feeling bad. The anxiety was terrible.

Other days I'm okay. It's not easy but I'm not sad and I manage more.

It's easier said than done but I would try not to let what others say get to you. Sometimes people are misinformed or they words are well intented despite being unhelpful. I've found sometimes people just say things for the sake of saying them... This one really does puzzle me.

I've been to the doctor this week as I've been unwell with a few different ailments. Person one I met who doesn't know me well at all said "are you okay? You are looking very pale today." Then person two a few hours later told me I was "looking well". 

Which is it? Am I ill? Based in my symptoms and my doctors reaction... Most likely. Am I pale? Possibly... Does this suggest ill? Possibly... Was I looking well? It seems unlikely but people seem to say this! I'm not sure why! To make people feel good... I guess well is a good thing... And if you care about how you look then I guess well would be satisfying... Maybe I momentarily looked well...

Also, people tend to have strong opinions and particularly in the ASD community this is more likely due to black and white thinking. It's either good or bad in many people's opinions but actually sometimes it isn't that simple. For me being autistic is both a good thing and a bad thing. I can't change it therefore I accept that with the good comes the bad and only I truly know my experience of living as an autistic person.

Hi Sickle Moon It can get confusing when other people are giving you lots of conflicting advice and opinions, I suspect at least some of these are 'armchair physicians' that don't actually know what they are talking about? One skill that I've had to learn as I've got older is to apply a filter to other people's opinions, to realise that it is just that, their opinion, not proven fact, to take on board the bits that sound 'reasonable' and to discard the bits that sound like complete rubbish!

While there is nothing 'wrong' with being autistic and there are positive traits to it. Autism is a disability/disorder/condition so of course autistic people will struggle with some things that non-autistic people don't struggle with and no-one should be calling you a drama queen when you upset because of difficulties that you face. You may find that you need a bit of support to help you with the things that you struggle with.

That said, it is possible to be autistic and still lead a happy, productive and fulfilling life. 

I was trying to write a helpful reply to try to cheer you up but I'm not always too good with words.

I hope you're doing ok?