Why I didn't know I was autistic

I was also born in the 1960’s, it’s so interesting reading other peoples experiences, little bits that I had most probably buried resurface. In infant school I was playing chess while the other children were playing with plasticine. I always found adults more interesting.

As autistic people we are all so wonderfully different but connected, my reading and writing is totally opposite to yours, I still struggle to read and write, holding a pen is still awkward and my coordination is quite poor. Conditions like dyslexia and dyspraxia weren’t really accepted as existing, more concentration was just needed or I was just clumsy!

I always knew I was different and never fitted in, I wasn’t invited to parties but then again wouldn’t have wanted to attend anyway. At the age of 10 I actually bought a book, it was a boy’s handbook, I thought I could learn how to behave like the other boys and share their interests. I suppose I was teaching myself how to mask. It was like they all communicated in a secret code and I hadn’t been given the code.

I was 54 when I finally realised I am autistic, I still find it a strange thing to say. One day just by chance the radio was on in my workshop, two autistic people were being interviewed and explaining how autism affects their lives, they basically recounted most of my life. The research started that day. I felt elation, later a lot of sadness for all the “what ifs” throughout life and anger for not realising sooner.

I am married, have children, a job and drive. All things that some doctors still believe aren’t possible for autistic people. None of it has been easy but I feel better for finally knowing why I’m just different. I love the intensity of being fully absorbed in a special interest to the point where nothing else matters and it absorbs me. I don’t think the muggles can ever feel that.

I’ve used this analogy before, as a child I felt like the “Ugly duckling” on the pond, it turns out I was different, I became a swan, all the rest of the pond will always just be ducks.

So much of this happened to me but I had forgotten about it - or tried to blank it. Thanks for the memories. They are painful but also helpful. Itchy clothing labels…

This is interesting. I also grew up in 60s and 70s. I had an imaginary friend when I was small but I thought that was what young children did.

I had people to play with at school but was not accepted by some. I either joined in with others or had things others wanted to play with.

As a child I had difficulty with some clothing like wool and labels being itchy.

I had a strong sense of smell but just thought everyone did until I discovered some people didn't notice the smells I did.

I found being away from home difficult even as I grew older and it was particularly hard to socialise with people I didn't know.

At school my lack of eye contact was questioned and I just thought it was a problem I couldn't solve. 

From the sixth form and onwards I found walking into a room of people a challenge if it was not a structured environment where you had somewhere to sit.

I had interests I followed with intensity which were of no interest to peers.

I struggled in my previous job which required a lot of face to face interaction.

I liked spending some time with others, but also enjoyed my own company and when away like at college really struggled with sharing a room.

I had times at school when I felt out of the world, especially in busy places.

It is only in the past few years since having the internet and reading up and trying quizzes that it all fell in place that there is a reason why others might find me odd and I struggle to fit in with most people's expectations.

A big part of the problem for me has been the lack of knowledge. I had no idea, for example, that stomach issues are related to ASD and a common complaint. I’ve only been a member of this community for a few days and already I’ve discovered so many probable answers to my questions.

I ask myself the same question as you: if only I had known these things sooner, or the people around me had known them. Would it have helped me? I think so, but only now. Much earlier in my life I’m not sure I would have accepted the suggestion that I was neurodivergent. I would have probably scoffed at the idea. But now that I’m older, I’m ready to accept, learn and change the way I live. A place like this is a huge help.

Looking back at my childhood I can see there were a lot of signs of autism but it went undiagnosed until I was in my 20s.

As a child I had imaginary friends, I spoke to no one except them, never made eye contact, kept everything neat and tidy (my OCD was bad even then).. I hated loud noises, and certain things I touched, normally clothes, caused me to go in to sensory overload.

I'm much the same now, very little has improved except for the imaginary friends who have all gone. I did have them up until I was about 19 though and at the time the medical professionals thought I was mentally ill because I still had them. But during my diagnosis I was told it was just that I had a very good imagination and was creative, part of my autism they seemed to think.

As an adult my autism affects me in several ways that can be hard to manage with no support from professionals or my own family. I get a lot of gastrointestinal problems, inflammation is a big one, but I've got ulcerative colitis as well which causes no end of problems for me.

My social skills are nearly non existent, they've always been this way unfortunately. I communicate way better online like I am now than I do in person.

Reading a lot of your post resonated with me and looking back it was so obvious I had autism. It's a shame it wasn't seen until later, but then again, I don't suppose an earlier diagnosis would have made school or trying to fit in any easier.

I'm glad you found this community. I'm glad you know who you are

This is so interesting. I just posted asking about female autism and diagnosis when I don't seem like the "stereotypical" autistic person. I'm not diagnosed so I'm not sure if my clues are even relevant lol but here goes:

- Extreme "shyness" as a child to the extent that I sometimes just wouldn't reply when an adult asked me something (they called me ignorant); the head teacher of my primary school made a point of asking me why I was so quiet; and relatives commented on my quietness as a reason to not want me around.

- total lack of social nous that persists to this day (aged 40)

- Like you: reading ability that was off the charts, literally: was tested age 6 (might have been the 6 year net?) and my reading went beyond the diagnostic range which went up to 15.

- very strong spelling and grammar abilities (which I have stopped being such a stickler about because I have become lazy in my old age, lol)

- always loved to draw and paint realistic images. Some creative art work too. 

- very strong fantasy life: interest in previous historical eras, buying vintage clothes, imagining myself to be a flapper or a hippie or whatever...

- friends younger than me, some of whom (not that I have many) turned out to also be neurodiverse - I enjoy the company of autistic people because they talk about interesting things rather than engaging in small talk. 

- no interest in small talk until very recently when I made the link between asking people about themselves,  and making friends. (Someone had to tell me that you need to ask people questions about themselves to show them that you like and are interested in them.)

- friends and family called me things such as the ice queen, robot etc. For my seeming bluntness, insensitivity,  lack of emotion  etc when I thought I was just being honest and straightforward 

- despite the above, I have always been very emotionally sensitive, felt the pain of the world etc., suffered depression,  very bad at regulating my emotions and being resilient, other than just shutting down emotions completely

- I dislike dogs (sorry) because they stick their noses up your bum lol, intrusive sniffing, and their spit and bodies can smell really bad, and the smell gets onto you. 

- intense dislike of bad smells haha. They make me angry.

- obsessive picking of own skin, etc, smelling of things, sorry yuk.

- obsessing about potential relationships etc., fantasizing, unable to have relationships in real life.

- appearing immature or younger than my years. Dressing in clothes suitable for younger people.

- I have children and really struggle with being climbed on, touched etc and asked illogical questions hahaha

There's probably heaps more. I wonder if I really am autistic. There's a lady who produced an unofficial checklist of female autism and some of the above is from her list.

I'm starting to develop changes in sleep behaviour; too. Now, I rarely stay up late. Plus, I sleep more.

I was also struggling to make friends my age. My closest friend, now, is sixty; and I'm forty-four.

I had imaginary relatives.

My childhood experience was quite different. I hated noise, it was painful. Not only to my ears. I felt it like pain in my body. So school breaks and trips were painful. Generally before I entered the school building I felt some kind of force that pulled me back. That was the noise, the crowd, lights, smells. Everything mixed. I was bullied all the time and it took me years to even start trying to interact with my peers. I was picked by the teachers but my mom refused having me tested. My interests were pretty stereotypical- trams and magnets. I loved reading encyclopedias and watching documentaries. I felt comfortable spending time with adults or little children. But when I was told to go to my peers, I felt lost. I used to script whole conversations in my head. I stimmed a lot and I still do. 
As a young adult I started masking a lot to fit in. But when I noticed that it hurts me, does not serve me and does not really work, I stopped. Not fully, but I don’t bother so much anymore. Just as much as needed. Now it’s much easier for me, because I figured out many things on my own, got experience, and awareness. Now I don’t script so much, but still have to remind myself to give some certain answer to a certain question that comes most often. Before I approach someone I also think what do I say first. Like always I enjoy my own company and creating something on my own. I love silence and generally calm neutral environment. Everyday I take a break from everything and everyone to recharge and to prevent having heavier reactions. I feel like my sensory sensitivities get kinda worse, maybe it’s my impression but I’m always with my best friends to feel comfortable. Ear plugs and sunglasses. I used to be a people pleaser too, finally started setting some boundaries but still working on it. 

Hi Arise

Interesting that we have a lot of similar experiences. Females are supposed to have a different profile to males on the spectrum, but maybe it's just the mask that looks a bit different, while inside we're pretty much the same?

I also can hyper-focus, which helps in my job role.

I also have a partner and I can share my "geeky" interests with him. So that has always helped.

Hi take5,

Yeah - exhaustion is why I've always slept well most of the time. In recent years I've started to have some nights where my brain won't switch off from thinking about something though so I can't sleep, which makes me feel like a zombie the next day. Also I can't work full time any more - I now have a part time role which suits me, but I'm looking forward to retirement!

That reads much like my childhood. I always thought I was pretty normal. A high achiever and bullied for that as a kid, but still a regular kid mostly, and so now a regular bloke, right?. Slowly I have recently begun to realise that my normal is not what most other people call normal.

My ability to hyper-focus on my interests - now my career - has unsurprisingly helped me be professionally successful, but I have a binary approach to most things. Completely besotted with it, or completely uninterested. My few friends are very much like me and share the same views and interests because if they weren’t then I simply wouldn’t be interested in them or friends. That should make me lonely. But it doesn’t. I’m entirely happy with my own company. On reflection I have no idea how I ever fell in love with someone who doesn’t share all my interests but I did, and thank goodness for that. She has stood by me, put up with my shutdowns and meltdowns (although neither of us knew what they were) and has been my soul-mate. 

My anxiety has at times all but driven me mad. I have literally tormented myself into illness several times. I’ve learned to cope but now realise that this isn’t normal. There are better ways. It’s almost like learning to be a human all over again. 

My heightened senses are at times wonderful (taste, smell) and awful (noise). The latter seems to be getting worse. Thank goodness for noise cancelling headphones. 

Gastro problems; check 

Musical prodigy: check

Early academic ability: check

Everyone else is a robot: check

Difficulty being “blokey”, hiding my nerd/geek tendencies, finding it hard to say no. It’s all there, once you know to look. 

Hi Pixie

You pretty much summed up my experience right there. I have just returned from socialising and my wife questions why I had my head in my hands. It exhausted me. I often ask myself why didn’t I realise earlier as I have always thought I was different from a very early age. I guess as these things are not openly talked about you just carry on assuming everyone else is the same as you. It funny once you open up to being different how things start to fit together.