the autism that isn’t obvious and is hidden perfectly

Hey, 

I am just wondering if many people can relate to me. 

I got diagnosed with autism when i was 16 (I’m now 18) and to be quite honest for the last 2 years I have been in denial about it. I am also angry sometimes that it went unnoticed for so long. 

None of my friends know, neither do my siblings, it’s just my parents who do . I think that people would be surprised if they did find out, mine isn’t exactly obvious. 

Apart from having a terrible social battery, I am okay in social situations. All throughout school and now in college, I have had friends and only lately I have started to try masking less, which is no easy task as it feels so natural at this stage. 

However,  sensory wise i really struggle,I , get super awful motion sickness, don’t like to fly on planes, need routine, struggle with a chronic anxiety and often have panic attacks  but I can go to nightclubs, meet friends, play football matches infront of  50+ people. 

I get tired trying to explain myself everyday to people, that I just can’t do certain stuff but they never understand because its like if they can’t see it , its not there. Asking why i wont go on holidays, why can’t i do presentation infront of the class?. Nothing I ever answer, seems to ever be the right one 

  • Yeah this is way more common than people think, “hidden” autism just means you got good at masking early, doesn’t mean it’s not draining as hell, the social battery thing you said is basically the giveaway, you’re not faking anything, just learned how to survive it.

  • If travel sickness is a problem then try something like Sea Bands, they're accupressure wrist bands that press on a point on your wrist, they look like hair bands so aren't that obvious. They're also good for hormonal and medication sickness too.

    I don't like doing things in public, but I find I can do presentations as long as I know my material, for me thats much easier than going to a nightclub which I find totally overwhelming.

    I wonder how in this day and age you went undiagnosed for so long too? Many of us here weren't diagnosed until well into adult life because autism or any neurodiversity just wasn't recognised at all, or if it was only in the most extreme cases and for many years it did not include women at all.

  • Your experiences sound usual for many autistic people and I relate to much of what you say.

    Growing up, I didn’t have friends apart from occasionally one person who lived near me. She shared my interest in dogs and horses. I never used to be ok in social situations and I’m still not good at them, especially if they involve more than one other person. I fainted the first time I did a presentation in front of an audience. Through persistence and self training, I endeavoured to overcome it for the sake of my job. It was tough, it took its toll on me, yet I did it.

    I don’t go to the cinema because the big screen and noise volume gives me sensory overload but occasionally I enjoy live orchestra performances in concert halls or theatres. I’ve always enjoyed speed, whether in cars (off road) or boats but swings and roller coasters are a big no. I’m faster than most people at mental arithmetic but I struggled with mathematics at school.

    I need routine and I’m happiest working away at one of my research projects but I have an adventurous side which seeks new experiences (awaiting ADHD assessment).

    I keep this with me so that I can show it to people who can’t or (won’t) understand me. I think it may also illustrate your experience as an autistic person.

    https://the-art-of-autism.com/wp-content/uploads/2017/11/UnderstandtheSpectrum.pdf

  • A lot of us relate to you - some of us haven't discovered  we're on the spectrum until much later - I was in my fifties, and nobody had suspected, I realised it myself after finding out about autism.

    It can be very disconcerting at first, you have to work out what is really you and what is masking and learned behaviour. But this community helps.

  • I’m 58 and I received my diagnosis this year. I can completely relate to what you said. I also had some friends and went to nightclubs. But it felt more anonymous and controlled than sitting with some people in a noisy cafe trying to talk with people I am with.  The after effects that we mat encounter isn’t going to be obvious to others.

    I’ve had doubt over my diagnosis because if things I can it have done rather than what I struggle with. I think our own internal experience can be quite different from the external ones see.

    however I’ve always felt awkward and naive. I still feel mostly like an alien without the manual. Fifteen years ago I was diagnosed with generalised anxiety disorder and chronic depression because that psychiatrist couldn’t see  other struggles and I honestly didn’t think it was unusual or anything beyond that.

    so definitely it can be hidden from others as you are experiencing 

  • Wow, respect to you for doing and achieving all this in your young life, well done. I have light sensitivity so I don't like going out in the sun light between 10-5, I get utterly shattered and feel terrible after it. So I don't go out now just sit in my flat with the curtains drawn. Its all about finding out what works best for you and having people in your life who support it. My parents don't, my brother didn't, but literally everybody else I have met in my life does. I had a friendship group too at school but I threw it away because it would disregulate me, and I didn't know I was autistic and made a massive mistake of thinking staying at home with my parents was what I needed and they were the people causing my problems and pushing me to do things I couldn't do and in fact everybody outside of my parents could see I had autism, so when I told them, they were like 'I could have told you that' which upset me at the time because I spend 32 years not understand why I did things. 

    I think you are going great, keep it up and its perfectly normal to get sick of explaining, just say I have autism so I can't do that right now. Like last night I was at a concert, loved it, everybody was dancing and I was just sat on my own, wanting to get up and dance, but I know it would make me feel bad if I did it, compared to sitting there watching everybody else. Its hard internally/emotionally because you want to do things, but you know you will feel terrible if you do. Great post by you, thanks.