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"?

Parents
  • 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 Slight smile

  • 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.

Reply
  • 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.

Children
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