Why I didn't know I was autistic

I've been thinking recently about why I never thought I might be autistic until I reached my early fifties.

The first reason is that I didn't know what autism was, having grown up in the 1960s & 70s. I remember seeing "Rain Man" as a young adult, which is apparently what some people use as a stereotype for autism, but I just thought he was a savant. 

I thought I was just a "normal" girl and then a "normal" woman. As a child I didn't have any developmental delays. I slept well. I wasn't fussy about food. I was good at reading and spelling. I enjoyed books, art and crafts, music and dance, and loved animals. I had some friends. As a young adult, I liked being at home but did also like to see friends and occasionally go out for dinner or to the cinema or a concert. I didn't stim, I didn't have any obvious problems with eye contact. I didn't like school and was bullied for a while as a teenager, and as an adult I was manipulated by and had misunderstandings with friends and family, leading to breakdowns of some relationships, but I just thought that happens to everyone. I did always have trouble controlling my emotions and cried a lot - but I was just sensitive. We're all different - right?

So, what is it that makes me autistic?I

Here are some clues:

As a child:

I had an imaginary friend (and later, an imaginary horse)

I had gastro-intestinal problems from a very young age

My reading was so advanced I was probably alexythemic (but nobody knew what that was then)

My interest in horses was obsessive (I read everything I could find about them, drew them, collected models of them)

I taught myself to play guitar aged 11

My friend groups changed a lot over the years and I was generally not invited to parties, or even to other friends' homes - I mostly only mixed with them at school. It didn't bother me.

I preferred the company of younger children, and of adults, to kids my own age

At junior school one day, on observing the rough and tumble play and apparent lack of empathy of some other children, I wondered if I was the only real human and they were all robots.

Despite being fairly intelligent, I under-performed at school and didn't do well in exams.

I always suffered in cold temperatures (if I get too cold, it registers as pain)

As an adult:

I now realise I censored my conversations with other women to suit their interests: mainly talking about clothes, hairstyles, make-up, celebrities, popular tv programmes, etc. Not mentioning my interests in sci-fi, Stephen king novels, music, computer games, etc.  

I was always a "people pleaser" and I didn't know how to say "no" to a request, and ended up going to quite a lot of social events I didn't really enjoy.

I changed jobs a lot, due to problems with working relationships and feeling picked on by managers.

I've had lots of special interests over the years, including social sciences, food & nutrition and Interior design, and my main interests at the moment are reading fiction, computer games, and autism.

What were your "clues"?

  • Please accept my sympathy...

  • No clues, because I verhemently fought against being labelled as such as I was stuck with the prejudices of my childhood.

    It's only when I found a new therapist, who specialises in neurodivergeant care that I was able to see what everyone else saw and accept it for what it is.

    Still struggle though with the broken and worthless self labelling

  • Just to add to that (I forgot)

    For reasons mentioned above is why I have wrote in a diary every day for the last 7 months, since we found out that my 9yr old son is autistic. I record all events and happenings good or not so good and intend to do this until he’s a fully grown adult. I am hoping that he will see that we never overlooked who he is and did our absolute best to give him all the information to succeed in this crazy world.

    I have also written a manual for family/friends to help them understand what it’s like for us to exist alongside the typical population. That way there are no excuses for misinterpreting his traits for bad behaviour and they can make adjustments to suit. 
    If that doesn’t happen then I can only assume they don’t wish to understand him when I have provided them with all the information. 

    As you said Alienated this is the way it has to be for everyone to be their authentic self. 
    The world would be a much better place. 

  • Well written and so true. I often gravitated towards people that were different and was made fun of by my friends (so called for doing so). I had to pretend to be a certain way all the way through school just so I didn’t become the victim. I was lucky that I was only bullied a little, the company I kept at school mostly kept me safe. This did get me into trouble sometimes though as I was so easily led by others. 
    I do wish I knew then what I know now.

  • I thought everyone experienced the world as I did, until I realised, they didn’t! By Jane McNeice - Mind Matters Training

    I often find Jane's writing insightful and I think she expresses it for me.  What I have have learned since my diagnosis not so much about understanding me - I'd had 56 years to know me, but in the sudden revelations about how all these other people out there aren't like me.  No wonder "weird" was an adjective so often applied to me, whilst I scratched my thinking, "but we are all like that, aren't we?.  We all have a twitchy little rhythmic something don't we, etc, or else I'd put stuff down to my dyslexia (being rubbish at games because I can't co-ordinate) etc... But errr no, my perfectly normal is not other people's perfectly normal, apparently

    But mostly, because my life time has spanned the development in our understanding of what Autism is and how it can present, I guess I started out with many of the assumptions and misunderstanding that many of the public still have because the medica of decades ago taught them Autism = Rain man.  I can remember documentaries on TV explaining how ABA was trying to reach these poor Autistic kids who were completely devoid of empathy and emotion to the extent they would not hug their parents.  "How awful!" I thought to be born without the intensity of emotion that I experience.  LOL,  ok so it's laughable that I could ever have thought that now.  But the experts on Telly said.... I certainly didn't identify with that.

    I think for this reason, it never crossed my mind until I was frantically research why so many aspect of medical procedures and environments were affecting me the way they were.... oh! that 70/80's portrayal of Autism wasn't it at all and no wonder the world thinks I am out of step with it!  

    There's better information out there now and I think the younger generations of Autistic people stand a better chance of recognising themselves sooner.

  • Glad I made you laugh! Yes, I think Point Horror was for slightly older kids. R L Stein was my favourite author. I think he's in his 70s now, still going strong.

  • I think a lot of people suffer in this world, because of the standard that is being somehow forced onto everyone. But basically not everyone fits that standard. I feel much more comfortable around a person who behaves differently than the imposed standard, who stims, talk their own peculiar way, because this way I can see two things - this person is authentic and I don’t have to pretend much in interactions with this person, I can be also more authentic and not worry about comments or weird looks. I had a colleague in the college. He often came to me with questions about things that the lecturer talked about. I can write very fast. So I write what I hear but I make sense of it only when I read it later. Whenever he came to me I always just gave him the simplest possible answer and guided him, where he can find more detailed info to read and understand everything. I basically assumed that he had issues to understand spoken word. Just like me. He also walked around the campus with only one friend and others made fun of him or them both. For me it was something absolutely normal and natural and also desired to move around always with only one person, although I didn’t have such a partner over there. When he approached me, he always looked st the tip of my nose. Masking eye contact issues. I didn’t bother to look at him at all. I just gave him all the answers while looking into space. I felt that there was some kinda connection, similarities between us. Other students didn’t understand him, I did. I had no idea about autism at that time. I feel much different in NT world and I feel absolutely normal here in our ND autistic tribe, although everyone is different in both, NT and ND world. The goal is understanding and acceptance from both sides. I think everyone would benefit if we as whole humanity abolish most of the standards that force all the pegs into one hole. 

  • I went through Point Horror books like packets of crisps

    This is the funniest thing I've heard this month. Also thank you for remembering me about Point Horror. Was that a step up from Goosebumps if I recall? 

  • My clues are only 'clues' with hindsight. I read almost constantly when I was a kid. I went through Point Horror books like packets of crisps, and I vividly remember reading Lord of the Rings when I was 9 years old. At around that time, I wrote my first book, which began as a homework task - I just didn't know when to stop. In my teens, I always had stomach aches (and still do), and I *really* felt the cold. I had very few friends, but I had no interest in being popular. My best friend and I rarely see each other, and 96% of our email correspondence is about music. I was a 'people pleaser' but people didn't seem that pleased with me even though I tried. Since my 20s, I have been enraged by how casually cruel the world is. I'm absolutely baffled by people's respect for hierarchies and lack of respect for each other. 

  • Not that I'm aware of... Perhaps twins, separated at birth?

  • IF I had any sock puppet ID's they'd be voting you up too...

    What a superb synopsis of my own situation and experience.

  • Must say I feel that's the case with diagnosis.

    Struggled with so many things for decades. Never knew why, I blamed  others, myself, all sorts of things. I tried to fix the situation, but I didn't really know what the root of my issue was. Thought it might be health (my allergies etc.) , diet, environment, all sorts.

    Diagnosis came with a relief , knowing I had an answer, I've instantly been far less hard on myself. it fits on every level, answers all my questions, except for the "what do I do now then?" And "so how do I fix the issues it creates?" Ones.

  • I love silence too, I used to go on silent retreats, it was really interesting being with other people and none of use talking, you get to know people in such a different way as there are so few clues to who they are, you end up seeing the inner person. I find having close neighbours a trial especially at weekends and in school holidays when the children are all outside and playing loudly, there music on in at least one garden and BBQ's the smell of which make me feel sick.

    But I do often think that any slight difference an autistic person has is blamed on autism, like we're not allowed to dislike something or dress a certain way or do certsin things, when in fact everybody has things they like or dislike, people make different choices about what to wear and their look. I feel like this constant focus on what we do differently isn't always helpful for us or NT's. I feel that us round pegs are being put into very confined round holes which is better than being forced into a square hole, but we need to define our own size and shape of hole or we get into "am I autistic enough" nonsense. Of course we do have differences to NT's, but I think that as I get older, I see less diference and more similarities, maybe that's because NT's get less conformist as they get older too? I think it's terrible that diagnosis are being put in pink and blue boxes, girls so this and boys do that, society as a whole has been trying to move away from this type of stereotyping for decades, why is it different for us?

    All in all I think us autists have things that we could teach the NT world that would benefit all of us, a quieter world, a less smelly one, being allowed to be a human being rather than a human doing.

  • +1 for “muggles”

  • That’s about as good a definition of being an autistic adult that I’ve ever heard.

  • Are you me in another body? 

  • I had a couple of autistic friends at uni, they were both male and I started realising there were some similarities behaviour and understanding wise. I realised that my interest in personal development, counselling and a lot of stuff like that was more about me learning about how to be human than it was just about me and my journey and helping others.

    I have loads of allergies and intollerances, in trying to find out more about multiple allergies I stumbled across a piece about how women with Autism are underdiagnosed and that many suffer with health problems iike mine.

    A few years later I did seek diagnosis and am much happier knowing that theres a reason for the things I can and can't do, especially the friend and relationship angles. I can have relationships and friendships, but I need them to be limited and about something, my current friends are as much my dogs friends as they're mine. I mostly worked for myself when I could work at all, working for myself was the best way to manage the anxiety of being around other people. I find friendships difficult many of my friends partners don't like me and that puts on friendships, I think it's because I stand up for myself and the men are afraid it will rub off on their partners. I have problems with men in general, I either get on great with them or we really don't get on.

    I can't and never have been able to do all the "girly" stuff, I'm allergic to make-up, most clothes don't fit me because I'm to tall and I just don't really get it.

    School was weird, I was an only child and only ever played with one other child, when I got to school I was just overwhelmed by the noise, I didn't know there were so many children in the world. They all knew eachother, I was labled as selfish because I didn't know how to play or to share, I had a headache for the first couple of weeks. I spent a long time before diagnosis, wondering if because of early isolation from other children there were life lessons that I'd missed and that I still have to conciously remember to do. Learning windows that I'd missed, I ended up doing quite a bit of research on feral children because there were some things I recognised in myself.

    I spent so many years trying to fix things that wern't broken and a lot that were of course.

  • Sometimes it's like being like a 10000 piece jigsaw but with no picture guide. When you think you're getting there you discover odd pieces from another jigsaw. 

    I also have dysgraphia so my writing is challenging and in my case I have difficulty with spelling. 

    As you can imagine I was considered as slow at school which is very far from accurate. On the up side I was given extra tuition instead of doing sports. (Small win).

    We learn from our experience and hopefully grow and develop to be better.

    To paraphrase the saying, what doesn't kill us, gives us excellent coping strategies and a dark sense of humour.

    Take care 

  • It’s very much as if we are given an instruction book on the day of realising we are autistic, we open it and the pages are blank also the help section has be torn out.

    Ive thought about the other different kids from school, some would now be diagnosed as ADHD, many went under the radar with dyslexia. I found out in adulthood that some of the school bullies were like they were because they were being  badly abused at home.

  • Wouldn't it be great if we had a handbook or manual. Obviously what is normal for us may not be the same for everyone else, how would you know unless it was pointed out.

    Each of us are different but some of differences fall outside the usual range.

    Remember the kids that were quiet, disruptive, "slow", ungainly, brilliant or just odd. We grew up to become adults with very good coping strategies that unfortunately sometimes fail to cope.

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