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

A guest blog by Amy Tracey on autism

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 am just writing this from my own experience.

Ever since I told people I have Autism they always ask how because I “don’t look it”, and I know some of you reading this may look at my picture and think the same thing. I have heard many other females with Autism, and some males, tell me they experience this same problem, meaning their difficulties get ignored, so I’m going to write about some of the things I face – but please keep in mind that I’m still trying to understand Autism and ADHD myself as I’m only newly diagnosed.

Autism, whether high or low functioning, can affect how people socialise, how they see the world and affect a persons sensory processing. I have Asperger’s Syndrome a form of Autism and I also have ADHD, which affects your attention and makes controlling your behaviour difficult.

An Invisible Disability

“Oh I know someone who has Asperger’s and there is no way you have it”

I’ve 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” or “Oh but you don’t look Autistic” or the most patronising, “but you’re grand compared to other people so stop worrying”. Even after I explained what Asperger’s is and how it affects me and other people and that there is no “one look” they still don’t believe me. When I ask 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 make-up and dresses and that I can look completely “dolled up” or “pretty” 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 also feel their diagnoses is invisible because of this reason also and it then gets ignored.

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

Childhood and Growing Up

I was diagnosed at the age of 21. I developed late as a child, I began to walk just before the age of three and talk at the age of four 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 in my reading, writing and spelling and also in my social and emotional interactions with them and my peers. Yet this somehow led to them believe I was simply dyslexic.

In order to improve my social skills, they suggested to my parents that I take up an 8-week group intervention in a hospital-based child guidance clinic.That clinic then recommended I get continued support in school to manage transitioning and academic performance related anxiety as well as attending anxiety management and supportive therapy intervention in the clinic and yet psychologists still didn’t realise I may have been autistic.

I had problems with my concentration as a child and had to be seated away from the window or distractions. 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 exemption from learning Irish.

I have never had many friends, I 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 – all due to my 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 friendships I make don’t last long.

Going to work

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. One employer said that maybe customer service roles were not for me as I didn’t do well in face-to-face interaction and then I was let go. It felt as if I would do anything to please my boss but they would look for a reason to get rid of me. This is something which I am slowly improving, and over the past while I’ve been kept on.

College Student

In terms of exams I would 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, not university. I always wanted to learn and studied hard and was even awarded five ‘endeavour awards’ for my hard work, but yet I was still close to failing the easiest foundation classes. I believed I’d never be able to get a degree and that I was stuck this way forever and 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 and here I am now going into my second year of a degree course. I still struggle with exams, SA work, class mates and college itself. I can only learn how to progress academically and socially over time and having an SNA reader in exams growing up and even now has really helped me.

Autism 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 to sleep or else lay awake all night listening to small sounds. If I’m out in public and I look angry it’s usually because it’s too bright and I’m getting a strain-like feeling in my eyes. If a room is too stuffy or someone opens a can of Pringles, I have to open a window but every ten minutes. 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 but the music will usually force me to leave early or I’ll sit there hoping the night will end quicker and that is why I leave early, although some nights out I can last until the end and get a little hyper/energised and dance.

Stimming and other characteristics

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 as I lie down, it is something that I have been doing since I learned how to move as a baby is it’s calming and a method of escape.

Many people with autism have a special interest, which we can talk about constantly although these special interests may change overtime. My special interest right now is Steve Jobs and Apple or HR and I may tend to talk too much about this causing other people to get bored (but now I can pick up on that). I’m not able to start or hold down a conversation at times and can go blank, so I know I’ll feel somewhat safer just talking about my special interest – maybe next time ask me what my special interest is and talk with me about it and I’ll even ask you about your interests.

In terms of my ADHD I find it hard not to blurt out words and sometimes have difficulty controlling my behavior allthough I have learned to control this better.

So next time people think that I don’t look “autistic enough”, I hope they may read and remember this blog post. 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 as everyone, with or without a diagnoses, is different.

Please share to raise awareness and most importantly understanding!

Thank you