I don't want to self-ID as being autistic

[TonyThreePies]

It's late and I'm tired but I need to get this said. I've been convinced forever that there is something "different" about me. As a child I overheard my aunt asking my dad if I was ok as I wasn't playing with the others and he said I was a loner. I wasn't. I just didn't understand how to join in, what they were playing, what the rules were. Later in life I was shy. Then I found an article that said that premature babies had under-developed social skills as they hadn't developed fully in the womb. Then I was an introvert. These labels all kind of fit, but it wasn't until a few years ago when I read about female presenting autistic traits that I thought - this is me. I finally plucked up the courage to speak to my GP about it and after a long and emotional telephone consultation she agreed with me that I probably am autistic. Is that even the right way to say it? I don't know, I'm sorry if not.
Anyway, she went on to say that she will refer me for an assessment but warned me that they are rejecting all cases at the moment as they are so overloaded. She was lovely and incredibly empathetic and went on to say that if I felt that it was a light bulb moment for me then it was perfectly fine for me to self-identify as being autistic (again, sorry, should I say I have autism? I just don't know the right terms). She said that the service that I was being referred to would offer support, but if they felt that support to function on a daily basis wasn't needed ie people were coping then there is nothing that they could do.

I feel really uncomfortable with the idea of this. I don't need support as such, but I do want to be able to say - this is why I am the way I am. This is why I need (my work) to explain things and not leave me to figure it out for myself. I need to understand that I'm not just rubbish at stuff.
I can't afford a private diagnosis, which is what she also suggested. I just want to make sense of me instead of constantly kicking myself for being crap at everything.
Sorry for the long thread and the ramble. I'd really appreciate it if anyone else has had this experience and has any suggestions of how I move forward - with or without a formal diagnosis. Thanks.

Can you research the adult autism services where you are and self-refer or ask for a GP referral? I too wouldn't want to self-identify and am currently on a waiting list for assessment... it's pretty likely I am autistic though. I'm rearranging the pieces of my life in my head, but would never say it out loud without a diagnosis, if you get what I mean.

Unfortunately it’s a bit of a waiting game with assessment but worth it.

Self identifying as autistic (most of us although not all prefer identity first language) is ok as long as you don’t want to rely on the diagnosis for adjustments in some settings. To be honest there’s nothing you get with a diagnosis other than maybe accessing some post diagnostic sessions for a few weeks but if you need to apply for benefits or adjustments at uni, less so work but not always then you’d need some kind of proof which only comes with diagnosis. The rule seems to be if you’re trying to access money or funding you’ll need the formal diagnosis. Lots of support orgs recognise the difficulty with assessment waiting times and will accept you on a self diagnosis basis

I can't really offer any advice but I am in a similar position. I was told this week that there is a strong possibility I have autism and have been put on the waiting list for diagnosis. But it is 2-3 years! In the meantime I am really uncomfortable not knowing and would not be able to self identify as having anything without knowing for certain (I guess that doesn't fit with the term 'self-identify' but hopefully you know what I mean).
I am currently very conflicted about all of it. On the one hand relieved at having an explanation of why I am crap at everything and on the other thinking I can't possibly be. The thought of waiting so long to have an answer makes me feel quite distressed to be honest (although I know everyone in this position has to go through that wait).
Anyway, sorry, not helpful, but your post resonated a lot, but I can only offer sympathy.

Was diagnosed in my early 50’s.

It meant that everything made sense. How I was as a child, my feeling different, my ability to mimic/mask, my absolute need for routines.

I’d say save up just a little each month to go private whilst waiting on the long (long) NHS list.

That sucks; I hope you manage to get some kind of diagnosis without fighting tooth and nail. Always seems to be the way... I'm currently waiting (2-3 years) for an assessment but I've spent the past year as a member of various autistic facebook groups which have convinced me that this is what's 'up' with me. Speaking to other autistic people is just so helpful, along with the info shared. So in the meantime, depending on the situation, I've now started to say "I'm awaiting assessment" or "the doctor said I'm likely autistic" but the one I long to say is "yes I'm diagnosed" - i.e. by me! Sorry this is not very helpful but

If you do want to find decent facebook groups, look for ones that are actually run by autistic people rather than parents of autistic kids or whatever. Here is one that is quite good: Women with Autism / Autistic Women and Girls

I’m currently on the waiting list for diagnosis. My GP said it’s important to get formally diagnosed because it legally entitles you to reasonable adjustments in the workplace and it prevents people discriminating against you. E.g. if an employer complained you weren’t smiling or making eye contact, without a diagnosis you would have no recourse, but if you had an autism diagnosis that would be disability discrimination. Or if you found the office radio distracting and asked for it to be turned off, that would be a reasonable adjustment if you were diagnosed autistic, whereas otherwise they could just say no. I don’t think it’s enough to just self ID because you don’t have the same legal entitlements.

For me, this is such a tough one. I've always wondered what's wrong with me. It's appearing my eldest son is autistic and with a lot of reading, I'm beginning to realise we are very similar.

I don't think I will seek a diagnosis. I'm self employed and manipulate my work place to suit me. I take steps to avoid situations that make me feel uncomfortable and I've surrounded myself with a few friends who look past my over sharing and frequent mis guided statements. They don't mind when i put my foot in it or having to explain a joke that I haven't even realised was a joke.

I might just stay how I am and quietly think to myself. I will say, my marriage is very difficult though

Waiting is frustrating but worth it.
It means you get reasonable adjustments made in the work place and it gives you a sense of relief when you finally find out why you've been so different all of your life. That was the overwhelming feeling for me when I was diagnosed. Relief that I wasn't just making it all up.

As for what term you use, it's up to you.
I say I'm autistic as it's part of who I am, I dont have autism like I don't have shyness, it's just part of who I am as a person. I am autistic. I am shy.

@OrangeDino

I can't really offer any advice but I am in a similar position. I was told this week that there is a strong possibility I have autism and have been put on the waiting list for diagnosis. But it is 2-3 years! In the meantime I am really uncomfortable not knowing and would not be able to self identify as having anything without knowing for certain (I guess that doesn't fit with the term 'self-identify' but hopefully you know what I mean). I am currently very conflicted about all of it. On the one hand relieved at having an explanation of why I am crap at everything and on the other thinking I can't possibly be. The thought of waiting so long to have an answer makes me feel quite distressed to be honest (although I know everyone in this position has to go through that wait). Anyway, sorry, not helpful, but your post resonated a lot, but I can only offer sympathy.

Same it's a long wait isn't it!

Sorry you're in the same situation @autienotnaughty.

I can’t afford a private ASD Dx, and the wait lists here are a joke, but I’m on them.

However, due to the screening by my GP and further screening by my local service (they do that before you’re allowed on the list), it’s pretty much a given that I’ll be diagnosed.

So I do self ID, in that respect.