"She doesn't look autistic"
What Amy wants people to know about autism
This is an opinion of a young person and does not necessarily reflect the opinion of SpunOut.ie. It is one person's experience and may be different for you. If you'd like to write something for SpunOut.ie please contact firstname.lastname@example.org.
I am writing this so people will understand that autism has no “one look” and that every individual with autism is affected differently. I am not an advocate - I'm just writing this from my own experience.
Ever since I've told people I had autism, they always ask how do I have it or they even tell me that I don't, because I "don't look autistic". This isn't right and I know some of you reading this have probably looked at me and thought the same thing. I have heard many other females and some males tell me they experience this problem meaning their difficulties get ignored too and it's just not helpful. I am going to write about some of the things I face, but please keep in mind I am still trying to understand autism and ADHD myself as im only newly diagnosed.
Austism, whether high or low functioining, can affect how people socialise, how they see the world and can affect a person's sensory processing. I have Asperger’s syndrome, which is a form of autism, and I also have ADHD which affects your attention and makes controlling your behaviour difficult. Still, I have come across a number of people who tell me "Oh I know someone who has Asperger’s and there is no way you have it”, “Oh but you don’t look autistic” or the most patronising of all, “but your grand compared to other people so stop worrying”. People say these things to me even after I have explained to people what Asperger’s is and how it affects me and other people. I tell them that there is no “one look” and they still don’t believe me.
When I asked these people what differentiates me to other autistic people they know, they say it’s down to my looks. Yes: my looks, the fact that I wear make-up and dresses and the fact that I look completely “dolled up” or “pretty” the very odd time I get to go out. I have heard from many people that they feel their diagnoses is also invisible because of that and it then gets ignored. I am here to tell people my experiences with autism in the hopes that they will gain an understanding and a better awareness of it, 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 only began to walk and talk before the age of three and I had to start school at nearly 6 years of age. I had a horrible time integrating into 3 of my schools and teachers noticed I was behind on my reading, writing and spelling and my social/emotional interaction. This some how led to them believing I was just dyslexic. They then suggested to my parents in order for me to improve my social skills that I take up an 8 week socialisation group in a clinic. I did this and yet psychologists still didn’t think I may have been autistic even after all of that.
I had problems with my concentration as a child and I had to be seated away from the window or from anything that may of 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 itself. 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, and every friendship I make doesnt last long.
I was constantly in and out of jobs, no job lasted longer than two 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 behaviour, being awkward, robot like personality, no facial expression, clumsiness, not knowing how to speak/ interact with customers etc. I even had a job point out all these things and one job stated how maybe customer service roles were not for me as I didnt do well with face to face interaction and 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 still have to slowly improve and over the past while I have been kept on.
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 normal job and is not intended for university. I always wanted to learn and studied hard and I was even awarded 5 endeavour awards for hard work, but yet I was 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 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 that I still don’t struggle with exams, SA work, class mates and college itself. I can only learn how to progress academically and socially overtime and having an 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 very irritated with a noise in the distance and I would have to wear ear plugs if I go to sleep or I lay awake all night from a small sound most times. If I am out in public and I look angry it is because it’s too bright and I’m getting a strain like feeling on my eyes, and if a room is too stuffy or someone opens a can of pringles I have to open a window, 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. I have had the odd night out with people and usually, the music will make me leave early or I’ll sit there hoping the night will end quicker, although some nights out I can last until the end and get a little hyper/energised and dance. 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 that I have been doing since I learned how to move as a baby and it is a method of escape and also calming.
One characteristic people with autism may have is a special interest. We can constantly go on about it. These special interests may change overtime. My special intetest at the moment is Steve Jobs and Apple or HR and I may tend to overly talk about this and the other person can get bored but now I can pick up on that. I do this as I'm not able to start or hold a conversation at times and I can 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 and I'll even ask you your interests. In terms of the ADHD, I find it hard not to blurt out words and control my behaviour, although I have learned to control this a lot more.
So next time people think that I don’t look “autistic enough" please remember this and that autism doesn't have one certain look. Please stop stereotyping. There are still 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” that people have. In fact, some of the best looking people I know have autism. There is no cure for autism we need understanding from the community that everyone with or without a diagnoses is different. Please share to raise awareness and most importantly understanding!