This is not an original idea by any stretch of the imagination.
There are several lists just like this one floating around online and having read quite a few of them over the last two and a half years, I felt inspired to create one of my own. While my late diagnosis at the age of 29 in April 2016 turned my world upside down, it also explained a lot.
I’ve pulled together a list of everything that makes me, me.
When viewed in isolation, any one of these things might seem like something that might apply to anyone — autistic or not — but I want you to keep in mind that the overall collection is just as relevant as its individual pieces. Don’t be someone who mistakenly believes that everyone is on the spectrum because that just isn’t true. It’s also quite marginalising and diminishes the validity of experiences had by autistic people.
Instead, I’d like you to view this as a celebration of a different brain on a page. The good, the exceptional, the challenging and the downright depressing. It’s all there and it’s all me.
1. I don’t always know when someone is being sarcastic. Don’t invite that person to the meeting? OK, I won’t. Oops.
2. And on that note, it once took me 3 months to understand a dad joke.
3. The taste of mayonnaise and all mayonnaise based sauces makes me feel sick but I’m not allergic to it. This can be quite a challenging thing to explain when eating out and it’s not always respected.
4. A crowded shopping centre is my idea of hell. Bright lights, loud sounds, crowds and plenty of moments of unexpected and unpredictable human interaction. I do 95% of my shopping online and it all gets sent to a PO box that my husband checks during his lunch break. If an online store doesn’t deliver to PO boxes, I won’t shop with them.
5. I’ve never understood the concept of saying “Good Morning” to people the first time you see them in a day. I hate mornings. Also don’t understand why the time of day is part of a greeting.
6. My large shoe collection has a carefully considered taxonomy. They’re grouped by shoe type and care needs e.g., smooth leather shoes are in one group while glitter coated shoes are in another. Extra special shoes like those I purchase from Irregular Choice all remain in their original boxes.
7. I can’t always tell when someone is making fun of me. Someone once gave me a present as a joke and I actually really liked the gift and felt so happy that someone had been so thoughtful.
8. I really struggle to read facial expressions. I find that if I haven’t known the person for several years, I have to ask what’s going on behind it.
9. I’m terrible at remembering to stay in touch with people. It’s not because I don’t care about them, it just doesn’t naturally occur to me that I should actively remain in contact once my life moves on from them or where I see them the most.
10. Forming long term relationships (all types) can be really hard. More often than not, people tend to tire of my differences and leave me behind. It is starting to happen less and less — maybe I’ve just finally found the right people.
11. My facial expressions don’t always match what’s going on inside.Someone once suggested I collaborate with others on an article and thought my facial expression meant I didn’t want to do it when really I was unpacking the problem of where the hell I was going to find these people and what to do if they said no. I’m constantly thinking 20 steps ahead and reviewing every possible pathway.
12. I don’t naturally read between the lines or recognise when to ‘take a hint’. For example, if I ask a question and someone doesn’t answer as their way of saying it’s a stupid question/they don’t agree/something else, I’ll just keep asking until they engage with me.
13. Certain textures have a calming effect on me and make me feel happy. I love those squishy things that seem to be having quite a moment — I almost lost my mind when I found giant ones at the shops the other night!
14. I freeze up and struggle to answer questions when approached by strangers in public. I’ve had several people (men mostly) accuse me of being dramatic (in much more colourful language) when I’ve reacted to their sudden intrusion into my heavily focused mind. In that moment, I’m don’t view them as a threat — I’m just startled.
15. I don’t instinctively know the difference between left and right. I make shapes with my thumbs and forefingers to figure out which one to say when I’m giving someone directions.
16. I never know when it’s my turn to talk in a conversation. I always miss the ‘window’ and tend to interrupt a lot. Problem is if I don’t pipe up when I have that thought, I’ll most likely forget it by the time the other person stops speaking. Given enough time with specific individuals, we’ll both eventually fall into a conversation rhythm but that person has to be willing to meet me halfway and balance their irritations with my disability.
17. Small talk makes no sense to me. I don’t know why people ask how you are unless they truly want to know. I learned a long time ago that unless that person is a friend or family member they don’t want the truth. I’ve developed a default response for everyone else, but sometimes I get caught in a repeating autopilot loop of “I’m good thanks, how are you?” and lose track of what’s going on.
18. I’m really bad at remembering faces. Three years ago a conference I introduced myself to the same person four times in the space of a single day. We’re still friends — it’s OK.
19. I find large social gatherings (like conferences) to be really mentally draining. It takes a lot of work for me to constantly interact with strangers on that scale and for that long. I tend to disappear on walks at lunch or stick with people I know for periods of time so I can just be myself for a little while.
20. I love language. I’m good at applying it, learning it, and confusing the crap out of other people by the words or phrases I use.
21. I have a very hard time following unwritten social rules. I don’t understand them and I don’t instinctively apply them. I eat my dinner as soon as it arrives andI don’t instantly offer to remove my shoes on the rare occasions that I visit other people’s homes.
22. I have no problem going against the grain and doing my own thing. I read somewhere the other day that human beings are hardwired to please others as a survival mechanism but I seem to have a lesser degree of it. I won’t simply go along with something I don’t want to do or don’t believe is right just because the rest of the group is/wants to.
23. I don’t suck up to authority figures. I treat people equally and hold everyone to the same ethical standards. I don’t care who you are. I’m not that easily impressed. I value ideas and impact — not titles.
24. I never know what to with my arms when standing around out in public.They’re just kind of there and I don’t know where to put them. I’ve started wearing cross-body bags so I can just hold the strap or adjuster buckle whenever I get stuck.
25. I never make assumptions which can be challenging when receiving or giving instructions. I need full details and context — even the stuff that seems super obvious.
26. I love booking my cinema tickets online and choosing my seat. It helps me to predict that experience better and makes me feel a lot calmer. And if I happen to find someone in my seat, I will tell them to move because I’m not going to be someone who then goes and sits in someone else’s seat.
27. I really love my alone time. I like withdrawing from the world and recharging. I remember telling a friend one time that I was unwell over the weekend and he said “Oh it’s a shame it ruined your Saturday night!”. It depends what you think an ideal ‘Saturday night is’. Mine is my favourite takeaway and binge watching television at home in a comfy chair.
28. I don’t always know what to do when people around me are having a hard time. I care about them, but I struggle to understand how to put that feeling into action and help them in a meaningful way.
29. I research restaurant menus pretty heavily before choosing where to eat. I need to know exactly what to expect and if there are enough mayonnaise-free options.
30. Emotionally charged stories in film or television make me cry — a lot. I often find myself connecting with these characters on quite a deep level — even more so if it was based on a true story.
31. I love musical theatre. Yes, it’s loud and bright, but in the right way. It’s a chance for me to get completely lost in another world and I always sit in the front row. If I can’t get the front row, I won’t go. I saw Heathers: The Musical last month and the stage was at floor level. I was in the dead (pun intended) centre of the front row and it was so magical being that close to the story.
32. A knock at the door can ruin my entire day. It’s unpredictable, almost always unexpected, and it’s loud. That sound rattles me to my core and depending on how loud it was and how many times it happened, it can take several hours for me to regain my focus.
33. I can’t watch fictional depictions of autistic people in television and film without shaking and crying uncontrollably. It triggers something in me. There are some tv shows that walk a very fine line in this regard. Sometimes just the mention of an autistic person or just the word itself is enough to trigger that reaction in me.
34. Anything that breaks or changes my routine at the last minute can be quite jarring for me. I plan ahead and make detailed schedules and to-do lists and it can take me a moment or two to change my focus and my plan. It’s not that I can’t do it, it just takes me a little longer and sometimes this is taken as me being unhelpful. Someone might ask me if I can do something for them and before I answer, I’ll often stop, run through my plan in my head and think about how I can rearrange my schedule before I respond. This can be viewed as hesitation. It’s not that I don’t want to help, it’s just that I first need to work out how I can help before I commit because I’d hate for them to be stuck with someone who can’t help them.
35. I really love colouring in. I was doing it long before it was cool and I do it everyday.
36. I’m good at dyeing my own hair in unnatural colours. A few years ago I dyed my platinum blonde, learned how to maintain the cool tone of it and dealt with my dark blonde regrowth by myself. It was a skill that I wanted to learn and through my determination and colouring in skills, I mastered it. I have a wonderfully supportive hairdresser who cheers me on every time I walk into the salon for my 8 week haircut.
37. Making and holding eye contact can be quite painful for me. I tend to look at people’s eyebrows, glasses and hair instead. If I’m meeting someone for the first time, I tend to look at the floor or at a space behind them. There’s only three people on this planet that I can hold eye contact with for more than 10 seconds, but even then I never make it beyond the 30 second mark before it hurts. One is my father, another is my husband of 5 years (we’ve together for 12 years in total) and the third is a really good friend who has had my back for almost 5 years now.
38. I have a very strong sense of justice. If I catch a whiff of wrongdoing or inequality I won’t stand by and watch it happen. I will speak out against it and I don’t care how unpopular it makes me. I’m not out for blood either. All I want is acknowledgment that it was wrong, an apology and clear evidence that steps are being taken to end or prevent it from happening again.
39. I’m good at solving puzzles and not because I am one — screw you and your puzzle piece logos! When my focus isn’t being trashed and I’m not being overwhelmed by my environment, I have strong problem solving skills and approaches that often differ from those around me. I’m able to look at things sideways, upside down and back to front in ways that other people might find strange but they’re almost always delighted when I crack it! I love games likeThe Room and solving sudoku puzzles. I’ve never played an escape room before but I suspect I would love it.
40. I fidget a lot. My hands are constantly moving and seeking out textured surfaces to touch. It’s involuntary and it’s actually called ‘stimming’ which is a mashup term used to describe self-stimulation. It’s my brain’s way of calming me down as I move through a world that is sensorily overwhelming. I was at a restaurant last month and someone put a pile of coasters on the table for people to use and before I knew it, they were in my hands being shuffled like playing cards over and over again.
41. When I see something I like or I’m really happy and just being myself, I’ll often skip in between my walking steps and my hands will flap slightly at my sides. I don’t even know I’m doing it.
42. I tend to notice really small details as I pass them. I read licence plates, I look at individual pieces of gravel and tiny details on trees etc. I get lost in every edge, corner, and shape.
43. I can focus my attention so deeply that the rest of the world just disappears. This is one of my favourite things to do because I can achieve so much. The downside is, if that focus gets broken, it can take hours to get it back.
44. Talking on the phone especially with people I don’t know can be really hard for me. Conversation is always a challenge, but doing it over the phone seems to amplify those difficulties. It’s even harder to tell when it’s my turn to talk, I’m never sure if I’m going to get a chance to say everything I need to say and it’s usually an unexpected conversation that I haven’t had time to prepare for. I tend to rehearse pieces of conversations beforehand to create structure and give me something to fall back on if I get stuck. I also screen my calls and if a recruiter that I’ve never met for example, sends me an email saying something like “What’s your phone number, I want to talk to you about a role etc”, I usually ignore it because I’ve learned that they’re not usually interested in learning about and accommodating my communication differences when they approach me like that.
45. I experience Executive Dysfunction (ED) which means it’s hard for me to get and keep my shit together. I find it difficult to get organised and manage my time on my own. I use lists and lots and lots of post-it notes to help me keep everything together, but sometimes I make mistakes. It’s not easy managing ED while also coping with sensory overload and the confusing minefield of social interaction. It’s not just one thing that I can conquer and everything will be OK — it’s a constant daily battle to exist among all these moving parts. Most people don’t/can’t understand this and this makes life even harder. Please be kinder to autistic people and stop tearing them down for their perceived failings — you have no idea how much effort it takes to leave the house each day.
46. I can’t drive a car. I spent 15 years and thousands of dollars trying to learn and I just couldn’t do it. There’s just too much stimulus to take in and I can’t manage every aspect of driving while processing all that information. I found that if I was across my mirrors, I was speeding and if I was watching my speed, I missed a mirror or a head check or made a wrong turn. I renewed my Learner Licence seven times. About 3 months after my diagnosis, it was due for renewal again and I just cut it up. I no longer feel pressured to be something I’m not and I’m at peace with what I can and cannot do.
47. Boarding a plane makes me feel severely anxious. There’s a lot of people moving quickly in one small metal tube of a space and I always worry that I’ll take too long or I’ll get in someone’s way or worse, there will be some unexpected social interaction required that I haven’t planned for and I’ll be stuck in that moment. Where possible I try to talk to the airlines about being pre boarded — even if it’s just 2 minutes ahead of everyone else. This is never a problem when travelling internationally but domestically in Australia is a very different story. The two major airlines that operate domestic flights out of Canberra (my home city) require me to speak directly to the gate staff about pre boarding and I’ve found that this can be a really awful experience. They often think that because I can talk, travel alone and dress myself as well as I do, that I must be full of shit. I’ve been mocked and ridiculed by gate staff who haven’t believed me and I’ve been forced to flash my medicalert bracelet just to be taken seriously. I’ve actually stopped asking about pre boarding and have resigned myself to being one of those annoying people who loiter around the gate queue space as soon as the staff appear. Or I ‘accidentally’ queue up when they call for business class passengers to board.
48. Alcohol has a weird effect on my brain and it doesn’t take much. After one standard drink, I start feeling lightheaded and sleepy and after two standard drinks, I start feeling very dizzy and headachey. I’ve only ever been hungover once in my entire life and all it took was five standard drinks consumed across one 8 hour period.
49. I can’t wear stockings or tights for long periods of time. They feel fine when I first put them on but within an hour or so, they stretch and start moving. And then my other layers of clothing also start moving — but in different directions. Thanks to my sensory differences, this is almost impossible to tolerate. It’s incredibly distracting and very uncomfortable to the point that I cannot focus on anything else. I have found that fishnet stockings stay in place which is perfect because I love vintage styling, but otherwise I just wear black leggings as footless tights.
50. I experience regular bouts of insomnia. I find it very hard to switch my brain off at the end of the day — it just keeps on whirring. This makes falling asleep quite challenging and I can be left tossing and turning until well after 2am making it next to impossible to get up before 8am. It’s not always like this but when I’m caught in a pattern of sleeplessness like this, it can last for several months.
51. I’m not afraid to be seen. I don’t fear the consequences of speaking so openly about my disability, mental health issues or the abuse I’ve experienced at the hands of other people. I do despise the backlash and the hate mail I receive — but if I feel anything about that, it’s anger. Anger that will be channelled into putting a stop to each and every person who feels the need to bully and abuse autistic people. Authenticity comes easily to me.
This list is by no means comprehensive and I have no doubt I’ll be back in 6 months or so with a follow up piece of 51 more reasons why, but I really enjoyed writing it and hope you enjoyed reading it!