Lived Experience Forum

[Mantis]

I'll be honest in saying I'm not sure this is the correct place to post this, nor am I sure it's even worth bringing up, but I've been worrying about this for months and I figured I needed to communicate with someone about it - whether that is the endless void of the internet or these funky little forums. 

Approximately two months ago, my cousin, who I have known for a long time has Autism, approached me in a silent moment at a family dinner and told me they believe I have Autism as well. They said they had suspicions for a while when they were younger - especially as I "never seemed to grasp conversation and hated discussing anything other than ants," but never saw me enough to make a judgment. I laughed it off, but they continued to explain small behavioural patterns and we basically reached the conclusion that they were probably correct. It went far beyond conversation and ants. 

Shortly after, I spoke to a doctor about it and he promptly gave me details for a local facility where that kind of thing can be assessed. He agreed with the points my cousin made, and my mother mentioned she had suspected it as well but, "it didn't concern her as much as my anxiety." In another two months, I'll be assessed, though with all the reinforcement from family I'm fairly certain of what the verdict will be. 

I'm aware that being given a diagnosis will not abruptly change my personality, behaviour, or hobbies - but I'm concerned about how it will change my friends' perception of me. My friends are incredibly intelligent people, but I have seen them poke fun at Autistic behaviour before (as a fair few people seem to do without realising), and I'm concerned they might treat me differently. There was honestly enough debacle when I came out as non-binary, and I'd rather not exacerbate the pre-existing issues by adding another layer of not-typical. 

If anyone has experience with this, words of advice in explaining ASD to people who know little on the subject, or even simple reassurance, it would be fantastic. I'm sure this is just my worry going overboard, but it can be hard to convince myself of that, sometimes.

[Rainforest]

Hi @Mantis - welcome to the SANE forums. It's great to have you here. I'm currently moderating Thanks for sharing some of your story with us.  It's great that you've found your way here to the forums and I think you'll find the community is a great place for support, information and connection. Feel free to ask the SANE forum team or the members if you need help with how to use the forum. You might like to check out the Guidelines as they can be a pretty useful in understanding how it all works  https://saneforums.org/t5/help/faqpage#community-guidelines.  Take care  

[Former-Member]

Hi @Mantis 

welcome to the forum 😊

I'm on the autism spectrum. I was diagnosed at 41. It was helpful to have close family members involved at the beginning to get an accurate diagnosis, but that was it. I don't talk to them about it or 'out' myself to friends. For me there is no need to. They met me and know me the way I am, they've never experienced me as 'neurotypical'. It's a privilege if I let them know. It's my choice. 

The only environment where I talk about ASD is with my therapist. I'm in therapy for mental health issues, not because of ASD, that came in the mix later. It's not about changing myself to fit in the neurotypical world, but rather understanding why I feel and act differently sometimes and why some concepts, like feelings, are difficult to grasp. Even after years of therapy I still have to check details about emotions to figure out what i feel. I've been masking all my life, successfully, I know that I need to look excited when I open a present, or give affection, but I don't really feel it, things are difficult for me when I can't push the into equations. But that's how people know me. In therapy I'm also learning how to regulate my emotions better. 

One of my biggest frustrations was/is about the question why I should adapt to fit into this world. I don't have the answer for that, I don't know if that anger is appropriate, I don't know if that comes from being on the spectrum.

Autism for me just means that my perception of the world is different to neurotypical, that's neither good nor bad. 

if you don't mind me asking, I'm why age group are you?

[Mantis]

Thank you, @Former-Member, for the welcome, and for the detailed response. It is very much appreciated.

I guess I never thought about keeping something like that close to the chest, but after thought about your experiences, it certainly makes sense that there's no need to mention it beyond somewhere like therapy. The concept of just existing in a different way, without the need for others to know how that difference occurs or what that might be labelled as, does seem rather pleasant. I suppose I just assumed it would be something shared - but having it a choice and privilege seems much more realistic.

I think your anger seems entirely appropriate, and I have no idea if it's tied to being on the spectrum but I imagine there are lots of people on the spectrum who would think the same. It does seem like adapting is what the world expects. I'm not sure that's a good thing. Or even a moral thing. 

I'm in the young adult age group, if that's specific/broad enough. Much younger than 41, and genuinely surprised it took to 41 to receive a diagnosis. It does make me feel a lot less concerned about being (what I perceived as) 'late'.

I notice you used the term 'masking', which I've heard my cousin use a few times, but I'm not entirely sure I understand. From your explanation, it seems like pretending to be neurotypical? If you wouldn't mind, could you possibly explain that further?

[Former-Member]

Hi @Mantis 

I'm glad I was able to help a little. Reach out if you have more questions in the process 😊

I don't think what was formerly known as Aspergers was diagnosed in my younger years. I'm high functioning - what an awful way to say it, there's no high and low functioning, just different functioning. My therapist and psychiatrist first noticed & mentioned it to me. For me it's not a disorder and my therapist & psychiatrist never made me feel like I have a disorder. I've had complex mental health issues from very early on in life, that was never diagnosed until I was 39 either. Things have changed over the years. And that is good. Now that there's more awareness kids can be raised and supported in a more compassionate way. My parents got some really bad advise about how to 'deal' with me. 

I can't give you a proper definition of 'masking' (you can google that), I can only tell you how I understand masking. For me it was learning 'what is socially acceptable'. For example the way my parents dealt with my anger/rage showed me it wasn't acceptable (friends & family too), so I started to internalise my anger/rage which created other problems for me mentally. I used the example of showing excitement and happiness when receiving a present, I'm not ungrateful, I just don't get naturally excited, so I learnt 'how to show that to the external world'. It's what's expected. I don't get humour, I take everything literally. I've learnt to laugh when others laugh. I struggle with dark comedy especially because I take it word by word and don't see the funny side. That's probably one thing I do tell people (without saying why) is that I don't get humour and they need to explain when I get offended. Normally people take to that pretty well, most people don't naturally want to offend someone. For me it all really is acting 'socially acceptable', being an actor. I'm learning to let that go a bit. I'm trying to understand why I feel a certain way and try to learn ways to honour my own feelings and regulate them in a way that makes me happy and not only trying to be socially acceptable. I understand that it's not appropriate to throw a glass against the TV, but I'm learning ways to find healthier ways to let my anger out. Masking is not good for my mental health. It's a long and tough journey for me, there's so much to learn and so much to uncover. I'm a work in progress.

Having what is formerly known as Asperger is a great thing too. I enjoy maths, I can see the bigger picture, organise things, stay calm in a storm... there's so much to love about the quirky nerdy things in life. Aspergers is a diagnosis, it doesn't define you. You are you. And your friends and family loved you before you got a label. A diagnosis helps to get you support in areas you don't understand or find difficult to deal with.

Take good care of yourself and reach out when you need to x

[Cocoloco]

My friends knew I was autistic before I did. They didn't know how much I struggled though. It's rather taboo and was mentioned once thereafter. I feel a bit isolated as there is no one to talk to about it. Most have mild intellectual disability. My adhd masks a bit of autism but it's obvious a mile off. 

people do judge. People however always found me odd. Friends are always friends I matter what. I am sad because of stigma at times. Please don't be afraid, if you aren't struggling there is no need for a diagnosis. If you are it can be private. Many just think I am strange.