What I Want the People Who Say ‘You Don’t Look Autistic’ to Know


I am writing this so people will understand that autism has no “one look,” and that every individual with autism is affected differently. Autism can affect how people socialize and see the world, and it can affect a person’s sensory processing.

I have Asperger’s syndrome, and I also have ADHD, which affects my attention and makes controlling my behavior difficult. Yet I have come across a number of people who tell me, “Oh I know someone who has Asperger’s, there is no way you have it,” “Oh but you don’t look autistic,” or the most patronizing to me, “But you’re grand compared to other people, so don’t worry.” Even after I have explained to people what Asperger’s is, how it affects me and other people and also that there is no “one look,” they still don’t believe me.

When I asked these people what differentiates me from other autistic people they know, they say it’s down to my looks. Yes, my looks — the fact that I wear makeup and dresses the very odd time I get to go out is what makes them not believe me when I tell them I have autism. I have heard from many people who feel their diagnosis is also ignored because of that.

The author looking down and to the side, standing in front of a gray wall

I am here to tell people my experiences with autism in the hopes that they will gain an understanding and a better awareness of this, for me and maybe others on the spectrum, the invisible disability.

I was diagnosed at the age of 20. I developed late as a child. I began to walk and talk before the age of 3 and I had to start school at nearly 6 years of age. I had a horrible time integrating into three of my schools, and teachers noticed I was behind on my reading, writing, spelling and my social/emotional interaction with my peers. This led them to believe I had dyslexia. They then suggested to my parents, for me to improve my social skills, that I take up an eight-week socialization group in a clinic. Yet they still didn’t think I may have been autistic.

I had problems with my concentration as a child, and I had to be seated away from the window or from anything that may have distracted me. I went to an Irish school for four years and still I couldn’t understand any of the work I was given and had to be given an exception from learning the language. I have never had many friends. I have had to depend on my sister for friends for the most part of my life. I was left out and bullied growing up for being different, hyper, “weird,” ”goofy,” “annoying,” “odd,” and so on. This is due to me not being able to understand social norms or interact properly. I also take things literally, which before my diagnoses resulted in people making a show of me.

I was constantly in and out of jobs; no job lasted longer than three months. I would work long hours, over hours and do the job perfectly. I lasted less than two months in each job, and I was told it was because of my lack of communication, bad eye contact, weird behavior, being awkward, robot-like personality, no facial expression, clumsiness, not knowing how to speak to customers, etc. I even had the next job after that point out all these things, and one job stated how maybe customer service roles were not for me as I don’t do well with face-to-face interaction. Then I was let go. It felt as if I would do anything to please my boss and they would look for a reason to get rid of me. This is something I have to slowly improve.

 

In terms of education, I used to barely pass school and college. I was put into the Leaving Certificate Applied programme, which is intended for people to go straight into a job and is not intended for university. I always wanted to learn and studied hard. I was even awarded five endeavour awards for hard work, but yet still was nearly failing the easiest foundation classes. I believed I would never be able to get a degree, and it was like I was stuck this way forever. I wondered why this was happening throughout my entire life, but now I know it’s a part of my autism, which has led me to improve myself and get the right support. Now I am going into my second year of a degree, but this doesn’t mean I still don’t struggle with exams, SA work and classmates and college itself still. I can only learn how to progress academically over time, and having a SNA reader in exams growing up and even now has really helped.

Autism also affects my sensory processing — how I taste, hear, see. I tend to become irritated with a noise in the distance, and I would have to wear ear plugs if I go to sleep or I lie awake all night from a sound in the other room. If I’m out in public and I look angry, it is because it’s too bright out and I’m getting a strain-like feeling on my eyes. If a room is too stuffy, I have to open a window but every 10 minutes. Or if a bus is too smelly, I’ll have to get off or the smell will just have a kind of control over me. If I have had the odd night out with people, usually the music will make me leave early or I’ll sit there hoping the night will end quicker, and that is why I leave early.

Another autistic trait I have is stimming. I can hide my stimming in public and I tend to do it only at home. One example of this is when I rock side to side when I lie down. It is something I have been doing since I learned how to move as a baby, and it’s my method of escape and calming.

One characteristic people with autism may have is a special interest. We can constantly go on about it. These special interests can change over time. My special interest at the moment is Steve Jobs and Apple. I tend to overly talk about this and the other person can get bored. I do this as I’m not able to start or hold down a conversation and go blank. I know I’ll feel somewhat safer just talking about this, so maybe next time ask me what my special interest is and talk with me about it.

So next time people think I don’t “look” autistic enough, please remember this. There are so many other ways my autism affects me too, but these are just some of the traits and difficulties I face, and there is no “one look” people have. We need understanding from the community that everyone with or without a diagnosis is different.

The author, looking at camera

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