Lived Experience Forum

[VeraVulcan]

First time doing this sort of thing, so here it goes.

To start off, I recently got diagnosed. Late.... Diagnosed.... Going undiagnosed for years takes a huge toll on your mental health. And quite frankly it's hard to mentally process and accept it for me personally. It's just quite infuriating when you went unheard for years, years of bringing up how odd you are, how isolated you felt. How inept at everything you felt and no one ever took you seriously until a psych points it out without you even bringing it up. Go figure I guess. I had my moment of "I knew I was right". But.... Well it was sort of this realization, this feeling of dread that.... You know that you're different. No matter what you do, you will always be processing the world differently and always have your entire life. If you are curious what level, it's level 2. As to why I was late diagnosed? Well my friend, it's the classic I'm a AFAB individual. Not getting the right help because of stereotypes and what not. I have my entire life tried fitting in, I do have distinct past memories of highschool, when I'd copy another individual, which well... Didn't go well. Not to mention everything else that made me different to others. I am trying to process my emotions and stuff, but it's so hard to do so. Some key people in my life aren't exactly letting me talk about it, without them spinning the conversation on their issues that isn't even autism. The people who claim "everybody is a bit autistic". Or the people who react like you've gotten cancer with the ASD diagnosis. It just hurts and makes me furious. ASD doesn't make you stupid, lesser or useless. Something that in my experience was hard to realize and still is...

I guess what I'm asking in plain terms, is how have some of you overcame being late diagnosed? Some strategies you've learned to cope with that fact that you have finally been diagnosed?

[tacocat]

Hi @VeraVulcan 

Unfortunately I don't have any great advice for you on this one, but I did want to take a quick moment to welcome you to the forums. 

We hope that you find the forums a great place to connect with other members, share stories and ideas, and find the support and connection you deserve.

Feel free to Introduce yourself here if you haven’t already!

I hope you get some insightful answers from our community soon. 

We look forward to seeing you around on the forums!

[The-red-centaur]

I didn't get diagnosed onto the spectrum til I was 30...I feel you in this mate. 

I don't know what advice to say. I just can relate a lit to what you are saying. 

[Jasper_123]

Hi @VeraVulcan , I wasn't late diagnosed but I was diagnosed as a young child and had this diagnosis hidden from me by my family. When I discovered it for myself at age 12ish (snooping) I felt immense shame at this discovery - I had many negative associations with autistic people (being socially stupid, ugly, never finding love etc) and so hid this part of my identity for many more years. 

I found that finding positive role models is helpful in accepting the diagnosis (autistic coded characters are fun), recognising the strengths (and challenges) autism has given me (I'm a very organised person, I'm also very emotionally intelligent) and giving yourself time. 

Another handy hint is to learn about autistic burnout and how to effectively rest as a person with autism. 

Hope some of this has helped!

[TideisTurning]

Hey @VeraVulcan & welcome to the Forums! I'm one of the Peer Support workers here 😊  First off, I want to pick up on something you've said; 

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@VeraVulcan wrote:

ASD doesn't make you stupid, lesser or useless.

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This is really true. Even though there can be a lot of stigma around ASD, it doesn't make you stupid, lesser or useless. Not in the slightest. When it feels hard, please remember that 💛

I hear too that it's a tricky adjustment, even if you now finally have a label that helps explain your different, and some of the struggles that have come with that. I'm not sure I have many strategies to offer, but love what @Jasper_123 has suggested! To jump off from the idea of finding others who can act as role models. One more well known example that comes to mind for me is Hannah Gadsby, who is an Australian comedian who was late diagnosed. Hannah's comedy special Douglas explores their ASD a bit, so may be worth a watch if you are interested and can find a way to access it 😊

I also wanted to mention the ASD space, in case that's something you'd like to be a part of. @The-red-centaur @Jasper_123 y'all are also more than welcome to be part of it if you'd like!

[VeraVulcan]

@The-red-centaur Honestly thank you for even responding, it's nice to know that I am not alone in this sort of experience

Even though you don't know what to say, I still appreciate you commenting, and I hope life has been treating you easier after getting diagnosed. Know that you're not alone 🙂

[VeraVulcan]

@Jasper_123 Genuinely I am going to start off with saying I heavily disagree with what family chose to do. I'm not sure what their intentions were, but if they thought hiding the diagnosis would "make the autism go away" then what?...

I am sincerely sorry you felt immense shame, autism is such a misunderstood thing. I honestly wish it was seen by the general population as something better then that... 

Surprisingly enough even before my diagnosis I already tended to gravitate towards autistic coded characters, because I felt seen, knowing I was like them (obviously I had no idea they were meant to be autistic characters, and that I myself were autistic but yeah...) The next pieces of advice I however, I was not doing beforehand. Smart idea actually, thank you! 

I will do that thanks, you are very sweet, thank you so much for your response Jasper!

[tyme]

Hey @VeraVulcan ,

My area of expertise is inclusion. 

Everyday, I see so many people who are 'on the spectrum', yet I've learnt that flipping the script to break down stigma is a huge start. 

You are right. ASD doesn't mean you are less. There is this incredible book I recently read called Different, Not less. It was such an incredible read and such an eye-opener.

Part of inclusion is ensuring we look at strengths. It is a strengths-based process that really embraces and celebrates diversity.

Social stigma and the impact of that is what really gives ASD a 'bad' rap. Yet I see their qualities shine through.

Did the diagnosis mean you felt more liberated? Was it an 'ah-ha' moment where you could say "Oh, is this why i've been thinking or feeling this way my whole life?"

Where ASD becomes challenging is when it impacts and hinders one's functionality in life. This is the hardest part. 

But no, you are NOT less. You may be 'different', but if anything, your strengths make you who you are.

I hope this response was okay. If not, I'll remove it. 

[creative_writer]

@VeraVulcan I took time to process my ASD diagnosis. I think I was so good at masking I didn’t feel like I fit the diagnosis. I have been able to recognise my ASD with time and not everybody with ASD has the same symptoms. I think it was overlooked in me since I was a girl and I did not have many of the stereotypical characteristics. I’ve learnt to accept it with time, instead of pathologising myself I’ve come to terms of accepting myself as neurodivergent. My brain is just wired differently and that’s okay. Sometimes I do still feel insecure and wish I was neurotypical because I feel like my life would be easier. I think it helps to focus on your strengths