The Autistic Culture and Identity Project S1

Name, and/or twitter handle: -M

Pronouns: she/her/hers

Parent/non-parent: Parent to 3 autistic boys

Age when you selfdx/were diagnosed autistic: 40

1. Did you feel you were different from others as a child?

Yes....I didn’t actually enjoy playing with others. I liked setting things up...scenes/playhouses etc. but not the actual make believe part. With the exception of my little brother who is ND. We were never bored in each others’ company. One year when I was about 10 or 11, he and I decided to wear one set, and one set only of what we referred to as our ‘rags’ for an entire summer. It must have appeared weird to others, to see a 10-11 year old girl dressed like this every day, but it was something we apparently really wanted to do. We cut apart red thermal top and bottom sets, and made them into our uniform. I can’t remember which characters we were envisioning-pirates seem like an obvious choice....but I’m not certain.

I didn’t have a regular group of friends I hung out with. I remember having one off play dates here and there. I did have a best friend for about 6 years who was a boy. We lost touch when our moms stopped being friends I think. I got into trouble for small things. I think it was related to my non-conformity. Social rules were invisible to me. I did what was right for myself, which could be interpreted as selfish, but it wasn’t that necessarily. I was a kind and generous child. I guess you could say I was driven by curiosity, practicality, and an iron will to bend others to what “needed” to happen. I think that’s where you could see a bit of the stereotypical autistic rigidity or inflexibility. I always had a do or die attitude.

2. Are your parents supportive of you as an autistic individual?

My father is not alive, and I think my mom just sort of doesn’t think about it. I would say she is neutral on the matter, at least to my face.

3. How did you determine your ethical system?

Even though I grew up in a religiously conservative household, I didn’t have a moral system that I adhered to outside of avoiding harm to humans and creatures. So, perhaps I was amoral. I would say I was unconsciously manipulative in order to achieve what I set out to do. I was very much a results driven individual. The only thing that mattered was “the mission” at hand. It was not until my mid-twenties that I started to think about who I wanted to be ethically. I had always been interested in philosophy, but a few books I read during that time changed my life. I realized that I could master myself, and live in an intentional way where I could still meet my personal deadlines, but view them as less critically important at a fundamental level.

4. In which way does your private self differ from your outward facing front?

I think I feel forced to get into FriendlyFaceMode when I just want to be serious all the time. It’s not that I don’t want to smile, or that I don’t have a sense of humor. It’s just that I typically enjoy quietly observing more than interacting. However, people want to engage me, and so I feel compelled somehow to appear as they expect so that I don’t seem odd. These superficial, small talk, throwaway interactions are tiring because I don’t get anything out of it; yet I feel I am somehow required to perform. Sometimes I encounter genuine, understanding, and wise souls out there—the conversation is deep and meaningful, and makes me feel alive.

5. Do you enjoy finding mistakes/errors in the production of films and television...continuity etc.?

That’s all I do! No, not really but I do love to make fun of how American films/tv get it wrong. I typically only watch foreign language tv and films. I grew up without a television anyway, and then naturally gravitated towards foreign content as an adult.

6. What are the top 3 traits you look for in a friend?

Loyalty, Empathy, and Doesn’t require a lot of care...like a rubber tree....that sounds bad, but what I mean is it’s hard for me to be available for talking, complimenting, and physical affection as much as it seems people need. All of the above exhausts me....listening for long periods can wear me down too, because I am an active, engaged listener; that effort is tiring if I need to maintain it.

7. What are the top 3 traits you perceive as negative but are willing to overlook in a friend?

Doesn’t love food, enjoys taking lots of selfies.....Oh wait, those are not traits are they? Ok....let’s see, Unintentional selfishness, materialistic mindset, rather critical, bossy-pants personality. I included a bonus “negative” trait.

8. What are the top traits you look for in a partner/traits your partner possesses?

Loyalty, Sees the big picture of life, Strong character, Not too social-hermit-like is ok, Lives to cook and eat.

9. What would you do with your life if you had unlimited funds?

I would ensure everyone in the world had access to all the delicious food they wanted, a cozy and secure dwelling, clean water, and a personal tree of knowledge, complete with talking serpent.

10. What does freedom mean to you. What does it entail?

Freedom is anonymous access to knowledge, the ability to make your thoughts known to others without fear of retribution, and the right to anonymous movement (unrestricted travel on our planet earth).

11. What does success mean to you?

Success is having an independent mind, free to think, and implement your will upon your life, in the way in which you see fit.

12. Are you more stable/happier/productive within the structure of a relationship...partner/good friend/long-term roommate?

I definitely am better with a partner. My partner is good for me because we have opposite skill sets. I am fine-ish on my own. However, life is more stressful, more messy, and unnecessarily hard, as I have a knack for finding the most difficult way possible to do pretty much everything. I appreciate the structure and subsequent healthy routines a partnership has provided for my life.

13. Do you find it stressful to be around other parents at school functions?

Yes I do. It takes me a really long time to warm up to most people. I am rarely part of a clique that embraces me. I feel typically panicked at first before I start casually scrolling through my phone. It seems as if I am “good” at hiding my feelings of otherness though because people tell me I come off as very confident-ha!

Before I realized I was masking my autism, I would be overtly friendly, which made me extremely uncomfortable emotionally, yet people seemed to respond to this. However, it was too difficult to maintain long-term, so then I would just drop off the map when I couldn’t keep it up anymore. I’m sure this confused people.

14. How often do you pretend to not see people you know if you don’t want to talk?

Honestly, I probably do this more than I should, just because I find conversation exhausting, and the cadence of it baffling....when do you sign off from a conversation-I literally never know, so I typically end it too soon in order to avoid being annoying. This appears rude, so I can’t win!

15. In which areas do you identify the most with other autistic people?

Thinking in pictures, small talk anxiety, over analyzing interactions, selective mutism, sensory issues including bright lights(especially the fluorescent type), crowds, touch, overstimulation. I find repetitive tasks overwhelming...I see dust forming, and I’m like again?! Or the laundry basket filling up sends me into a weird little internal panic. That being said, I do have routines I enjoy that don’t vary, and I cannot let myself be late...I’m almost always 10 minutes early to everything. In-person networking is hard for me because talking is not one of my strengths, and also the interactions over stimulate me. Online it’s easier and less anxiety inducing, because I have more control. I have a lot of interests I feed consistently, but don’t feel the need to share or discuss them with others.

The urge to just retreat from life to a cozy place with my books is a thing. I’m not sure if other autistics feel this way or not.

16. What are the most stressful aspects of parenting an autistic child as an autistic caregiver?

Their high level of emotional response to events stresses me out. I need to meet their needs, and yet help them learn to do things for themselves. I need to be their mentor at times, and their friend. I need to be their strong protector and ally, as well as the person who provides structure and entertainment. It’s like every other parent but with a heightened level of demand and intensity. As an autistic person, this level of stimulation puts me on edge, and then drains me emotionally. I have to add a positive here though...my kids also recharge my batteries with their love, insight, and humor. It balances out the scene overall.

17. What are the top 5 things you want your children to know about the world and why?

I want them to see the world beyond the society in which they reside. I want them to think about the long term impacts of the choices they make, and to find humor and irony wherever life takes them. I guess that’s just 3 things then :)

18. Does living off the grid appeal to you and why/why not?

It appeals to me because it seems practical overall. I like the idea of utilizing both systems...having off grid as an option.

19. What is your favorite style of architecture and why?

Can’t pick one: love Frank Lloyd Wright for his focus on making design work in harmony with nature. Moorish architecture for its elegant symmetry, and tall modern steel buildings because I like their giant glass windows.