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Why I didn't know I was autistic

Lotus

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"?

Parents

  • 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. 

Reply

  • 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. 

Children
  • in reply to Alien0n3arth

    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.