How society causes disabilities in Autistics to be missed

“Stop exaggerating” “It’s not that loud” “You’re just being sensitive” “It feels fine to me” “It’s just growing pains” “It doesn’t hurt that much!” “That happens to everyone but you don’t see anyone else complaining”

How many Autistics grew up hearing these words, being told their experience was wrong or that they were making it up or exaggerating.

I remember my mum brushing my hair as a kid and telling me to stop being so sensitive while I cried about how much it hurt. The pain was real, but because it wasn’t her experience I must obviously have been lying or exaggerating.

When we are told over and over that our experiences are wrong, or that they’re common, or that we are making a big deal out of nothing, then we start to doubt our own experiences, we start to doubt what we feel.

Growing up, I stopped communicating what I felt because my experiences were dismissed so often. So when I started getting migraines I would downplay the pain, thinking I must be exaggerating. When I got cramp in my leg that was extreamly painful, I thought I must be just more sensitive than everyone else. When I started to get unpleasant restless feelings in my legs that could only be resolved with movement, I thought everyone must feel like this. When the room would spin really fast and slow at the same time, and all the furniture would look really big but also really small at the same time, and I would start to hallucinate, well… that must be normal. When I started getting feelings of my skin being constantly itchy and feeling like bugs were crawling on my skin I figured everyone felt that but I was just weak for not being able to ignore those feelings. When I started to get dizzy upon standing and would faint, especially when my parents would see and do nothing, I thought it must just be a normal part of life, afterall, if it were something serious then surely my parents would care and would help me.

I never told anyone about my experiences because I had been told so often that I was complaining about nothing, and being a child, I didn’t want to further upset those around me.

Being Autistic meant my experience of the world was different to the non-autistics around me, and even amongst other autistics (I suspect my mum is autistic) my experiences might not be the same as theirs.

Society has a habit of ignoring the autistic experience, most of the information about autism was written by non-autistics trying to explain our experiences, so naturally these are incorrect, either fully wrong or missing parts that you’d only know by being us. A lot of intervention and support offered autistics is based on making us get used to our different sensory input. They think if a child is crying because the hairbrush hurts their head, they must need more hairbrushing to get used to the feeling. They don’t realise that all they’re doing is teaching us to stop sharing how that hairbrush makes us feel. It doesn’t change our sensory experience, but it does alter our perception of our sensory experience and of the world. We start to think that it doesn’t hurt as much as it feels, that we are exaggerating or too sensitive. It makes us feel like we can’t trust those around us, especially if sharing when something is hurting us means being exposed to more of that pain.

Being autistic doesn’t mean our experience is wrong, but we are often taught that it is. Many of us grow up thinking that we are broken or damaged, that we are attention seekers or crybabies, we internalise the way we are treated so much that we see ourselves as the problem, rather than society.

So when we experience actual medical problems, when we experience pain from an injury or illness, when we experience unusual sensations or heightened sensory input unusual to our normal experience, we start to gaslight ourselves. This means that we don’t ask for help when we should, and then when we do we understate our experiences. “My foot hurts a little, it’s not that bad though” only to later find out our foot was broken. “I’m surprised they didn’t feel it” the people around us say, oblivious to the idea that we not only experience a different sensory world to them but that we might also be minimising our pain. Maybe we didn’t feel the pain as bad as what a non-autistic might, or maybe we think it’s not as bad because that’s what we have been told for years, and maybe it’s both.

For years I’ve experienced pain and unusual sensory input, visual disturbances and memory issues. For years I downplayed my experiences, or felt they weren’t severe enough to ask for help. Some issues I’m only now dealing with. If I hadn’t been ignored and gaslit during childhood, I might have shared my medical problems and I might have had medical support years ago. Maybe some of my disabilities might not have progressed so much.

We need to start taking autistic experiences seriously. Just because someone experiences something different to most people doesn’t mean that their experience is attention seeking or exaggerated or wrong. Autistics often have medical disability comorbidities, it’s not unusual for autistics to have disabilities like EDS and fibro, just because you can’t see some disbailities doesn’t mean they don’t exist or aren’t happening.

I’ve lived for about 20 years with the feeling like there are bugs crawling on my skin, it’s called parethesia, and I’m finally on medication to help with it. But I could have had this help years ago if my parents had listened to me instead of ignoring me. My expeiences are real, even if they’re different to other people’s, that doesn’t make them less real.