Hello, I'm new here..I'm wondering what did people say to you when they first realised you were autistic?

Hi, this is my first post ever. I guess I just want to say something to strike up conversations with other autistics because I am feeling even more alien to NT's than before I was diagnosed. I was diagnosed with Dyspraxia too which affects coordinated thinking and movement, and sequencing of learned behaviour and movement.  

I was first told I had trauma based autism because I had severe shutdowns in hospital after major surgeries, like I couldn't stand and my eyesight/hearing went distorted and my limbs tingled, felt nauseous, had migraines, needed silence. I'd have to lie flat unable to talk to anyone for hours or days. I don't quite know if trauma is actually a cause of autism, or rather just some of it's symptoms it seems. 

Then a couple of years later, I realised that whilst I did have trauma growing up, I also showed all the signs of being autistic very young. 


I've been estranged from my family for many years, I've been focussing so hard on 'fixing' myself, ready to go back out there and build a life more true to me, free of oppression, only to find out that on trying to do this, I still suffer crippling nausea and dizziness and sometimes chest pain all due to the anxiety of feeling so alien around people or just not liking the noise level or light level, or speed someone is driving if I'm in a car with them.

I have a boyfriend who has known me many years before we got together too, and so my diagnosis hasn't changed the way he views me, but he doesn't quite understand how hard I am finding the diagnosis. I feel just being myself and taking up space in the world in the way I do makes people feel I'm weird, I am constantly wondering whether people see that there is something different with me or whether they just don't care either way..like how in the matrix those agents appear whenever people realise Neo is different from the crowd. 

I was bullied a lot at school and work and judged as aloof, disinterested in people, over sensitive or blunt, always late for things and always for some reason or another feeling nauseous or low energy. My boyfriend says the general way NT's think is when they meet someone, especially if it's a new colleague at work etc, they think "are you going to help me or get in my way" when it comes to life and success both socially and with career. 

I've tried to start telling people I'm autistic as subtly as possible, to see what effect it has on peoples tolerance or general understanding and to see what effect it has on my anxiety levels around those people.

I've had reactions as simple as "oh right" all the way to "oh so you must like trucks!"..I know that people just want to say something to relate to me and be nice..I think I just wish more NT's knew what being autistic means, but I think few NT's are even aware of how their own neurology works let alone someone elses. 

I am interested in hearing what reactions everyone else has had from telling people they are autistic, what did people immediately say to you? Did they say something assumptive to try and relate to you, which in turn actually makes you feel they have pathologised you? Or were you pleasantly surprised with anyone's reaction? 

 

Parents
  • Well, people thought I was a bit weird long before my diagnosis.

    They also thought many positive and negative things about me. I know this because I have been told directly, or heard it secondhand.

    I've always embraced my weird Smiley

    The biggest one was a colleague told me I was autistic and that I should get it checked out. I did, and they were right.

    When I got my diagnosis, I immediately made it public. I do so at any time I think it useful, which is most of the time, haha.

    I'll either say, "did you hear about my diagnosis?' to people who know me, or I'll skim around a bit , to warm them up, then I go all in. haha.

    For me it has been positive. Pretty much everyone has been cool about it.

    The annoying one is when someone goes, "Me too, well maybe, I might be a little bit. I haven't been diagnosed, but... We're all a little bit autistic, aren't we?"

    That's when I just think F-OFF.

    So sometimes it's not worth mentioning it, but you only find that out after the fact.

  • So happy to get your response, thank you. It's really motivating to perceive how upbeat you are about the fact of being autistic and about telling people. I want to be as confident as you sound when it comes to embracing my weird! 

    I think I used to embrace my weird as a child but I was totally unaware it was weird at all, until school and work got harder and harder. How did you feel towards the colleague who told you that you were autistic and to get it checked out? What were your initial feelings around it? 

    I got told that same thing "everyone's a little autistic", from a director of a college no less! 

    I think people around me never got to the conclusion I must be autistic because they already thought I was actually possessed by a real demon or mentally ill and just in denial about my mental illness. Work people just thought I was insubordinate. A problem to get rid of. I only found out about autism when I sought out a psychotherapist because I thought I needed to find out why people thought this stuff about me! I swear..I had actual house mates scared of me because they thought I was possessed, including my own mother. I want to laugh but I guess it's really not funny. 

    Maybe that's why I'm so scared of telling people I'm autistic, I'm so used to being misunderstood! You are right, you only find that out after the fact so I guess I should keep telling people anyway and hope for the best! 

  • It's tricky to explain really.

    I was fairly timid when I was young, but I did have explosive episodes. Not many friends etc. I was lonely at times, but I got used to it. I was a bit of a loner anyway.

    For whatever reason, I tried to ignore what other people thought of me. Partly because I didn't really care, and partly as a form of armour. My armour being "I don't give a flying f**k". Now most people probably know that's not really true, and I know it's not really true, but it's what has protected me from a lot of stuff.

    That attitude/charade has its downside of course, but I'm ok with it.

    Part of that attitude is about accepting fate and chaos to a certain extent.

    Anyway, I've worked with a lot of people who are bit odd, from people on the spectrum, some with mental health issues and on meds, people who probably should be on meds, to full on PHD scientists and brainiacs Smiley So being normal was rarely a requirement for me.

    If people didn't like me or understand me, they were free to go elsewhere., IDGAF

    Anyway, I had looked into neuro conditions a few times over the years, just out of interest, and had a few aha moments, but I never followed it up.

    Then I started to get really moody and burnt out, losing interest in work... everything really.

    I started working at a new place, to have a change. After a month I was asked if I'd ever been diagnosed with anything. I hadn't, but I said I wouldn't be surprised. About a year later I decided to move on. The colleague then listed all these things she'd noticed about me and said I was autistic.

    I laughed and said yeah probably. It was cool. I wasn't offended. It was the first time I started thinking about it seriously.

    I respected her opinion, and she had respect for me. She always said how grumpy and cynical I was, and she loved the not give a f*ck attitude, It was all really cool.

    Turns out, she later started her own journey for assessment. Like minds, hey.

    The other thing is I've only had a couple of jobs, Most of my adult life I've been self employed and working in creative arts and alternative lifestyles, so being normal isn't really a thing, hahahahah

  • I've been fairly fortunate in that I've been able to control much of my work life, although I haven't always done a good job of it. I often wouldn't know my own limits, the expectations of my clients, or my own expectations for that matter.

    I've said yes to work when I should have said no, lost interest mid-project and had to battle through etc. It caused me a lot of stress, and I couldn't see where it was coming from. I was kind of blinded by freedom and success, but didn't have the self discipline to handle it all.

    I don't really like talking about tattooing. I'm very proud of the work I've done, but talking about puts my mind into a spin. I have a love/hate relationship with it for various reasons, and when I have to think about it or talk about it it opens a dark chasm and I start to become very irritable. I'm not sure why, maybe because for me it's so multilayered, aesthetics, philosophies, psychologies, interactions, motivations etc. It's all too much for me to have to process, so I tend to shut down.

    SCI-FI

    I think I find sci-fi easier to read because it is engaging for me, depending on the writing style etc. There is something about speculation, invention, world building, that I find interesting. Maybe it's because I feel so detached from the real world sometimes, that the sci-fi worlds actually make more sense to me. Maybe it's because I grow tired of thinking about how long it's going to take us to move on from the way humans exist at the moment. Endless possibilities...

    I've never really enjoyed fantasy as much, maybe a hybrid. But I like sciencey stuff.

    The problem with reading any fiction though, is I can never really remember what I just read. I only know if I liked it or not.

    SCULPTURE

    I only really make stuff for myself, for my own interests. But that might be because I'm not a good salesman, and I'm rubbish at networking and finding opportunities. Not that my work isn't for sale..

    Making any form of artwork, or being creative in any form, is like a compulsion for me. It has always been there and always will. I like the discovery. It is how I try to communicate with the world, and it's how I try to process and understand my own thoughts and ideas.

    That doesn't mean I'm doing stuff all the time. I have long periods when I don't find the need, or I'm just not inspired or motivated.

    My work jumps around a bit, maybe that's why don't sell much, not enough 'brand' identity.

    I don't sculpt, in the traditional sense (well maybe sometimes), and the work can range from assemblies/constructions, to castings etc. I like to combine materials such as wood, metal, and plaster.

    I don't know what my work is about really. Sometimes I want it ot be about nothing, sometimes it's about solitude, or decay. But I'm mainly interested in shapes and structures. My work, I suppose, is abstract, non-representational. I'm trying to make things more minimal, but part of my brain resists.

    I generally work at a smallish scale, probably no larger than 40cm. It's easier to handle, quicker to make (sometimes), and there's something more intimate about smaller work.

    I rarely plan anything, I can't stick to a plan and I'd be disappointed with the result anyway. Once I have a visual in my mind, I rarely find the need or desire to make it real. It already exists, in my mind.

    I prefer to have a rough shape  or structure in mind, possibly with certain materials, then I just start making. I use my intuition, mood, motivation, and let elements used inform what follows. It's always an exploration. Sometimes it works. Sometimes it doesn't.

  • What do you like to sculpt? What themes do you follow and what inspires you in designing your sculpting piece? Do you sell them or do contracts for companies?

    I find it interesting how we've both dabbled to try and find which industry suits us. I thought I wanted to study english literature at one point because I find the meaning of words interesting, but realised that's only from a language learning perspective, I hated being in classes with neurotypicals pulling apart a highly metaphorical poem or novel..I wasn't interested in the emotions of the characters in a fictitious novel or the mental headspace of a poet, I just liked that words could take your imagination somewhere, and enabled me to play with it like write poems that rhyme, limericks were my favourite as a child. I used to make up languages and write them down, and I've been studying to be fluent in Spanish on and off for years. Any music in foreign languages interests me, I like to listen to the sounds coming out of peoples mouths. Still..no use being a translator because that involves people again! 

    I'd like to see some of your tattoo work! Do you think you will quit entirely one day? I've been on an ear piercing project journey for the past year, still going, I like the fact you can use ears to play with symmetry and negative space with jewellery.

    How did SCI-FI navigate around your reading difficulty? 

    I find I can read it if it's interesting enough to me, if the author doesn't engage me with their writing style I am easily distracted or just stare into space after a while and stop reading. I'm currently watching a wordless, totally sound scaped documentary of farm animals just going about their lives on a farm in black and white film with some drone footage and night vision too! My dog is enjoying watching it with me too! 

    Observing animals and nature scapes is so comforting to me for some reason. 

Reply
  • What do you like to sculpt? What themes do you follow and what inspires you in designing your sculpting piece? Do you sell them or do contracts for companies?

    I find it interesting how we've both dabbled to try and find which industry suits us. I thought I wanted to study english literature at one point because I find the meaning of words interesting, but realised that's only from a language learning perspective, I hated being in classes with neurotypicals pulling apart a highly metaphorical poem or novel..I wasn't interested in the emotions of the characters in a fictitious novel or the mental headspace of a poet, I just liked that words could take your imagination somewhere, and enabled me to play with it like write poems that rhyme, limericks were my favourite as a child. I used to make up languages and write them down, and I've been studying to be fluent in Spanish on and off for years. Any music in foreign languages interests me, I like to listen to the sounds coming out of peoples mouths. Still..no use being a translator because that involves people again! 

    I'd like to see some of your tattoo work! Do you think you will quit entirely one day? I've been on an ear piercing project journey for the past year, still going, I like the fact you can use ears to play with symmetry and negative space with jewellery.

    How did SCI-FI navigate around your reading difficulty? 

    I find I can read it if it's interesting enough to me, if the author doesn't engage me with their writing style I am easily distracted or just stare into space after a while and stop reading. I'm currently watching a wordless, totally sound scaped documentary of farm animals just going about their lives on a farm in black and white film with some drone footage and night vision too! My dog is enjoying watching it with me too! 

    Observing animals and nature scapes is so comforting to me for some reason. 

Children
  • I've been fairly fortunate in that I've been able to control much of my work life, although I haven't always done a good job of it. I often wouldn't know my own limits, the expectations of my clients, or my own expectations for that matter.

    I've said yes to work when I should have said no, lost interest mid-project and had to battle through etc. It caused me a lot of stress, and I couldn't see where it was coming from. I was kind of blinded by freedom and success, but didn't have the self discipline to handle it all.

    I don't really like talking about tattooing. I'm very proud of the work I've done, but talking about puts my mind into a spin. I have a love/hate relationship with it for various reasons, and when I have to think about it or talk about it it opens a dark chasm and I start to become very irritable. I'm not sure why, maybe because for me it's so multilayered, aesthetics, philosophies, psychologies, interactions, motivations etc. It's all too much for me to have to process, so I tend to shut down.

    SCI-FI

    I think I find sci-fi easier to read because it is engaging for me, depending on the writing style etc. There is something about speculation, invention, world building, that I find interesting. Maybe it's because I feel so detached from the real world sometimes, that the sci-fi worlds actually make more sense to me. Maybe it's because I grow tired of thinking about how long it's going to take us to move on from the way humans exist at the moment. Endless possibilities...

    I've never really enjoyed fantasy as much, maybe a hybrid. But I like sciencey stuff.

    The problem with reading any fiction though, is I can never really remember what I just read. I only know if I liked it or not.

    SCULPTURE

    I only really make stuff for myself, for my own interests. But that might be because I'm not a good salesman, and I'm rubbish at networking and finding opportunities. Not that my work isn't for sale..

    Making any form of artwork, or being creative in any form, is like a compulsion for me. It has always been there and always will. I like the discovery. It is how I try to communicate with the world, and it's how I try to process and understand my own thoughts and ideas.

    That doesn't mean I'm doing stuff all the time. I have long periods when I don't find the need, or I'm just not inspired or motivated.

    My work jumps around a bit, maybe that's why don't sell much, not enough 'brand' identity.

    I don't sculpt, in the traditional sense (well maybe sometimes), and the work can range from assemblies/constructions, to castings etc. I like to combine materials such as wood, metal, and plaster.

    I don't know what my work is about really. Sometimes I want it ot be about nothing, sometimes it's about solitude, or decay. But I'm mainly interested in shapes and structures. My work, I suppose, is abstract, non-representational. I'm trying to make things more minimal, but part of my brain resists.

    I generally work at a smallish scale, probably no larger than 40cm. It's easier to handle, quicker to make (sometimes), and there's something more intimate about smaller work.

    I rarely plan anything, I can't stick to a plan and I'd be disappointed with the result anyway. Once I have a visual in my mind, I rarely find the need or desire to make it real. It already exists, in my mind.

    I prefer to have a rough shape  or structure in mind, possibly with certain materials, then I just start making. I use my intuition, mood, motivation, and let elements used inform what follows. It's always an exploration. Sometimes it works. Sometimes it doesn't.