Autism doesn’t have a “look”…
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 also affect a person’s sensory processing.
I have Asperger’s syndrome. I also have ADHD, which affects my attention and makes controlling my behaviour 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,” or “Oh but you don’t look autistic,” and 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 that there is no “one look,” they still don’t believe me.
When I asked these people who question my autism what differentiates me from other autistic people they know, they say it’s down to my looks. Yes, my looks — because I wear makeup and dresses, people don’t believe me when I tell them I have autism. I have heard from many others on the autism spectrum who feel their diagnosis is also ignored because of this.
I am here to share my experiences with autism in the hopes of promoting awareness so that others will gain an understanding about autism, an 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 that I work on improving my social skills and that I take up an eight-week socialization group in a clinic. Yet, it didn’t occur to anyone to assess me for autism.
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 and had to be given an exception from learning the language.
I have never had many friends. I’ve had to depend on my sister for most of my life. I was left out and bullied growing up for being different, hyper, “weird,” ”goofy,” “annoying,” “odd,” and so forth. This was all due to not understanding social norms or knowing how to interact properly. I also take things literally, which before my diagnosis resulted in people making a show of me.
I was constantly in and out of jobs. I would work long hours, overtime hours and do the job perfectly but I would typically last less than two months at each job. I was told it was because of my lack of communication, bad eye contact, weird behavior, my being awkward, robot-like personality, no facial expression, clumsiness and not knowing how to speak to customers. One job stated how maybe customer service roles were not for me as I don’t do well with face-to-face interaction which resulted in my being let go. I would do anything to please my boss and they seemed to look for a reason to get rid of me. This is something I have to slowly improve upon.
In terms of education, I would barely make passing grades at school. 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 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 my autism, which has led me to improve myself and get the right supports.
Now I am going into my second year of college, but this doesn’t mean I still don’t struggle with exams, SA work and classmates. 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 and 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’ve 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 I go blank. I know I’ll feel somewhat safer when talking about this subject, so it’s always easier when people are willing to talk about my special interests and that way I’ll feel more at ease.
There are so many other ways my autism affects me too, but these are just some of the traits and difficulties I face on a daily basis. We need understanding from the community that everyone with or without a diagnosis is different.
So next time people think I don’t “look” autistic enough, please know that autism does not have a look.
You can find Amy’s original post on her blog at: amytracey94.simplesite.com
Follow Amy on Twitter: @amytracey94