"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.

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.

 

 

Why Forming Friendships Can Be Difficult for Me as an Autistic Person

I have always had problems with forming friendships. This may be a part of me having autism. I have had some really good and bad relationships with friends, and most didn’t last that long. I’ve heard it said that people with autism aren’t interested in forming any kind of relationship, but this is not true. Many autistic people, including myself, do want friendships and romantic relationships. It just may be that we have problems maintaining and creating them.

Social imagination, interaction and communication are three things autism can affect, and it can make this whole process more difficult. There are people with autism who are married with children and who still have lifelong best friends, and others who may not, but this doesn’t mean I will never have those kinds of relationships. It just means I may find it harder to form them.

There have been times I have believed I would never have a boyfriend/girlfriend and that I would never keep friends. There have been a lot of times I would go out and I would have little to no problem chatting and communicating with other people. I have even had people want to hang out. And there are a lot of times when the opposite would happen and the person I am interested in would simply not feel the same back. This is normal.

Sometimes in the past, people approach me first and they start off a conversation, but then it can start to become overwhelming when I really try to have a conversation back with them. I stand there silently and blankly with no words naturally flowing out of my mouth like they should be. I stand there and think about it while it’s happening, and then the bad eye contact and silent staring begins to start, along with the “wrong” facial expressions. Firstly if the music is too loud or the lights are too bright, I start squinting my face in a kind of uncomfortable-looking expression without even realizing it most of the time. My face looks angry and I look uneasy and stare with no words. Having an angry face mixed with the lack of conversation may signal to the other person “she’s not interested in getting to know me.” Usually when they have processed this, they tend to give up and walk away.

If you’re speaking to me and this happens, it may be because I have autism. It’s not that I am not interested in getting to know you and being friends. I actually may be very interested in getting to know you and I may really try to communicate that the best I can. But it may take me a lot longer to get comfortable with someone before I start a conversation, and I need to take some time to get to know the other person to start a conversation and also to hold one down. At times even the opposite happens and I have a conversation and I cant stop talking, but then I become tired and completely find myself stopped in my tracks with an awkward silence. This indicates to the other person that I have given up, and they usually say, “It was nice to meet you” and walk away. At times, that may be because the other person feels the same, but this usually happens because I am taking a break, or at times it is like I have forgotten how to communicate mid-conversation.

If I do come across standoffish, please keep in mind that I have Asperger’s and that may mean I’m not able to recognize or adjust my facial expressions at times. From the outside I look disinterested, but on the inside I do actually want to get to know you. Another reason why you may be standing in front of me or even across the room thinking, “Why is this girl giving me a strange look” or “Why does she look so awkward?” Well, keep in mind that the florescent bright lights are probably hurting my eyes. Or the reason I’m sitting beside you and seem aloof may be because the music’s too loud for me to get into a conversation right now, and sometimes sitting in silence helps me cope with these surroundings better. But this is just me, and every individual copes differently. This used to happen more often before I got diagnosed at 20, but it has gotten better over time.

It does get better, as there are people I am still good friends with. Usually that is only one or two people, but I have become very close to that small circle of people.

AMY TRACEY: FROM BARELY PASSING SCHOOL TO STARTING THIRD LEVEL EDUCATION

I’d thought for years that I’d never go to college.

When I was completing my Junior Cert in school, I worked really hard and gave everything I had into my exams, but for some reason those stellar grades I pushed myself for ever alluded me.

I was placed into the Leaving Certificate Applied (LCA) programme, which was designed for students who either weren’t quite ready for the traditional academic route or who didn’t plan on going into higher education after school. I did though, and was deeply disappointed and frustrated that, throughout my years of education, I was always pushing myself to do the best I could, only end up at the bottom.

I envied people in my year, watching them fill out their COAs. Because the LCA programme was my last chance to do as well as I could academically, I decided to really work hard but not to my surprise I ended up with only a very low merit (B–) but little did I know that I had autism – a neurodevelopmental condition which affects many aspects of your life with trying to function in the world, especially education.

From that point on, I had a decision to make: either go straight into work, or attend a community college. I ultimately opted to apply for a year-long sports coaching course at my local college in 2012. It was something to show possible employers on a C.V. and I’d a special interest in dance back then. The interview itself was very tough and the questions challenging to answer. Unless it was about dance or my own interests, I found them especially hard, but I knew it was better to be myself and answer them as honestly as it was possible for me.

I ended up getting the last place and I began college without them knowing I had autism. I didn’t receive all the necessary supports so it was therefore a much harder start. I found assignments confusing, would only just about pass them and the amount of different sports that we’d to do was fairly overwhelming for me to process. During exams, I’d to sit in hall with a hundred other students which was very different for me, since before then I’d usually sat them with only a few people in the room. I had to keep raising my hand and ask for help; the teachers were polite enough to help me but it was distracting for everyone else. At the end of my exams, I realised two things: college and sports are not for me.

At that point, I was sure that academia wasn’t where my strengths lay. I took up doing various jobs in different sectors for the next three years, but even then, part of me was still set on doing and finishing a degree. When I worked in customer service I became interested in HR and employee relations / job coaching. My own experiences in holding down work inspired me to look how I could help other people in similar positions; it was during those three years that I discovered how much autism was affecting my performance at college and at work.

I then was left with no other choice but to return to community college but I was aware of the supports that I could avail of in that college and that made it a lot less scary for me.

I applied for the business studies course, the interview process this time going much smoother than the last. The teachers interviewing me knew that I had social difficulties and so it was much easier for everyone involved. I had a reader in my exams and a lot of other supports with my assignments throughout that year. When I finished, I gained 7 distinctions and 4 merits. It was the grades and the supports and the belief that I had in myself from there on that made me believe I might be able to not just attend a third level college, but do well!

I applied to do business studies at a level six and was offered places at the Dublin Institute of Technology and the National College of Ireland. I went for the NCI in the end. It has amazing supports in place for its students. The Business Certificate is great as you can do a range of subjects at level 8 but then do your last two years in human resources or accounting. They run free maths support classes which I’ll be needing this year and much smaller classes to enable their lecturers to focus on helping students as much as they can. The disability supports staff were also great; they helped me in obtaining a reader for all my exams, an occupational therapist, and how to structure my assignments.

One of the most difficult subjects I had was financial accounting, the college had fee accounting support classes set up but this was not enough as I was no accountant so I had to get more grinds and study long hours because the truth is I am not gifted academically, I had to graft to get good marks or pass as well.

Financial accounting was one of the more challenging subjects for me. NCI have support classes for the subject, but even then, this wasn’t enough for me. I’d to get more grinds and push myself to study long hours. I tried my best to turn up to every single class and take down as many notes as possible. If I didn’t understand anything in my assignments, I had to ask questions from teachers and classmates. I had to start doing research for assignments straight away.

When it came to making friends in school, my younger sister was a huge support for me. She was the year below me and when I was diagnosed as being on the spectrum, I became a lot more socially aware. Both of these things were great preparation for enabling me to socialise at college. I get asked by classmates on nights out, have people to sit with between classes, but I still like to have my own space and be as independent as I can when going around campus, instead of trying so hard to fit in perfectly with everyone. I was lucky enough to even find people for group work but I didn’t put myself under pressure by being their best friend I just simply asked. I always give myself a month before exams to study at both Christmas and summer. It all worked out in the end in first year when I received an overall average of 60 (B) and it was all down to hard work and receiving the correct supports.

 

Insert blog post title here

You can replace this image with one of your own.

I'm a paragraph. Click here to add your own text and edit me. I'm a great place for you to tell your story and let your visitors know a little more about you.

I'm a paragraph. Click here to add your own text and edit me. I'm a great place for you to tell your story and let your visitors know a little more about you. I'm a paragraph. Click here to add your own text and edit me. I'm a great place for you to tell your story and let your visitors know a little more about you. I'm a paragraph. Click here to add your own text and edit me. I'm a great place for you to tell your story and let your visitors know a little more about you. I'm a paragraph. Click here to add your own text and edit me. I'm a great place for you to tell your story and let your visitors know a little more about you.

I'm a paragraph. Click here to add your own text and edit me. I'm a great place for you to tell your story and let your visitors know a little more about you. I'm a paragraph. Click here to add your own text and edit me. I'm a great place for you to tell your story and let your visitors know a little more about you. I'm a paragraph. Click here to add your own text and edit me. I'm a great place for you to tell your story and let your visitors know a little more about you.

Insert blog post title here

You can replace this image with one of your own.

I'm a paragraph. Click here to add your own text and edit me. I'm a great place for you to tell your story and let your visitors know a little more about you. I'm a paragraph. Click here to add your own text and edit me. I'm a great place for you to tell your story and let your visitors know a little more about you. I'm a paragraph. Click here to add your own text and edit me. I'm a great place for you to tell your story and let your visitors know a little more about you. I'm a paragraph. Click here to add your own text and edit me. I'm a great place for you to tell your story and let your visitors know a little more about you.

I'm a paragraph. Click here to add your own text and edit me. I'm a great place for you to tell your story and let your visitors know a little more about you. I'm a paragraph. Click here to add your own text and edit me. I'm a great place for you to tell your story and let your visitors know a little more about you. 

I'm a paragraph. Click here to add your own text and edit me. I'm a great place for you to tell your story and let your visitors know a little more about you. I'm a paragraph. Click here to add your own text and edit me. I'm a great place for you to tell your story and let your visitors know a little more about you. I'm a paragraph. Click here to add your own text and edit me. I'm a great place for you to tell your story and let your visitors know a little more about you. I'm a paragraph. Click here to add your own text and edit me. I'm a great place for you to tell your story and let your visitors know a little more about you.