Late-Identified Autism Interview: I’m Sticking with Self-Identification
This is the 17th interview in my series Interviewing Late-Identified Autistics.
Emily is a late-identified autistic. My questions are in bold and Emily's responses follow in regular typeface.
How old were you when you learned you were autistic?
How did you learn you are autistic?
I don’t remember how I came across “Highly Sensitive Person,”possibly because I was researching how to improve my personal relationships. I 100% identified with those traits (when I was 30 years oldish).
Separately, someone passed along the rdos.net’s aspie quiz, and I found out I was neurodivergent. I did not know much more about neurodivergent aside from the quiz result (when I was 33 years old).
Over the years since, I heard from a few separate conversations how “highly sensitive person” is another name for an autistic individuals. When I was working with my therapist, they recommended the DBT for neurodivergent workbook. I took some screening tests for “autism” (finally) and that’s when it all linked up for me. I did not know much about autism prior.
How did you decide whether to self-identify or diagnose?
I wanted to get a diagnosis. But:
There’s no standard to test “neurodiversity”
Most clinics I found focused on kids
It’s a lot of work to find a place to get tested
During that journey of trying to find a person, I realised I was hoping the diagnosis would “prove” I'm autistic. It’s mostly my need for external validation (since I’m not hoping for medication).
Hence, I’m sticking with self-identification. The label isn’t as important as accepting my individual needs and learning to work with them.
How did you feel when you learned you were autistic?
Why did no one tell me sooner?! It all made sense now!
What is your gender? How do you feel this impacted your journey as an autistic individual?
Female. Me being quiet, sensitive, talkative, anxious are all considered “normal” for a girl.
How did any other of your identities (ex. race, religion, sexuality, etc.) impact your late identification as autistic?
Some of my autistic/adhd traits (short attention span, extremely passionate but only for a short time, talkative, broad interest, mood swings) are considered “normal” in the circle I grew up with (Hong Kong).
I don’t have a religion, but I like Daoist principles. Being on the spectrum matches Daoist beliefs of no extremes. So that has been affirming, and helps me through times of isolation. I thought my trouble with the world is that I’m a Daoist / believer in fluidity in a world that’s more fundamental/ rigid (Confucious, Christian, etc etc). That said, maybe if I weren't a Daoist follower, I would not have coped so well and could have gotten help sooner.
How did your friends and family respond when you told them you are autistic?
“Yea, makes sense.”
Did you seek out therapy, coaching, or other forms of structured support for autism?
I was already in individual therapy.
How has learning you are autistic impacted your life?
Improving. I feel freer, more joyous and peaceful. I can breathe better now.
Slowly I’m learning new skills. Finally all the little pieces of quirks about me are linked. I no longer obsessively do personality tests/ read horoscopes etc to try to find validation in how I think, feel, act. Nor do I feel the need to research anything to prove that it’s legitimately okay to be upset about things or actions.
Your Current Life
How have you modified or adapted your life since learning you’re autistic?
I covered up the carpet in my room with gym mats (it’d be hard to refloor it with hardwood)
I listen to music when interacting with loud people
I stop trying to be nice and disengage as I feel pleased.
If I don’t feel good in a piece of clothing, I no longer have to come up with “legit” reasons like it’s not organic or natural materials, I just get rid of it and move on.
In what ways does being autistic enhance your life?
I connect deeply with my soul mates. I have a warmth and kindness that people around me really appreciate. I speak with candor. I appreciate nature.
What are some topics or activities you’re passionate about?
I have intense interest for short periods of time so I cycle through my interests like seasons. Newest ones: Relationships, neurodiversity, child development; recurrent interests: Photography, watercolour, gardening…
Sometimes I just “know” things, but aren’t necessarily grounded in reading any research papers.
What does a typical day look like for you?
Wake up, pump breastmilk, workout for 30-45 min, journal (or baby time), work (creative thinking, interactive thinking, focus work), family time, pump, alone time, sleep.
Work out and creative venture is a must for me to be productive.
If you work, what do you do for work?
Site Reliability Engineer (a kind of Software Engineer)
Is there anyone else in your family who is autistic?
My brother (only sibling). Maybe my dad. And maybe my mom as well. Some of my maternal uncles.
What are some of the challenges you face in being autistic?
Most “fun” places are too much for me - the mall is disorienting. I like all those activities, just need to turn it down to 3.
Most relationship and social wisdoms and conventions don’t work well for me. E.g. Speak your heart. Don’t go to bed angry, etc.
What helps you prevent or cope with moments of overwhelm?
Not much. Working on spotting signs earlier with my therapist.
Listen to music (piano music) on my bone conduction headphones (open ear, so maintained situation awareness - noise cancelling headphones cancel too much noise and that felt scary).
My soul mate can spot it before I do, and will talk in a soothing voice to calm me down.
What skills or strategies have helped you to work with your autistic mind?
Letting go of people’s expectations. Own my needs and opinions, be less apologetic about them. Easier said than done. It comes easier with practices, and with safe people.
One thing I am trying to do: No longer downplay or ignore my emotions.
Repeat mantras: “Everything is permitted.” “People who are upset at you for being you aren’t good for you” “Reject their standards, not your food.”
How does your autistic identity impact your friendships?
It helps find similar minds and sets expectations. I feel more confident and grateful for my new friendships since self-diagnosis. Finally, people I can breathe with, and not be on eggshells or “mothering” mode.
How does your autistic identity impact your romantic relationships?
Because the way I feel and process emotions are different, I have to define my own relationship framework. I love the freedom to not be confined to traditional expectations, but wish I have more prior art to follow.
Since coming to learn of my autism, I know better how to ask for what I need, and determine who is aligned with my wellbeing, and who is not.
What is your experience with medical systems? Are there ways you feel they can be improved for autistic individuals?
Completely overlooked. I wish I had the right type of help earlier. Our brains (Autistic) are wired differently. Any mental meds (Anti anxiety, antidepressants, stimulants, etc) are likely not going to work. Instead of drugging us, help us work with what’s bothering us and learn coping mechanisms (headphones, calming jackets), and skills and systems (like time blocks, regular body checkins).
Sensory sensitivities are real even though the tests show there is no disease or tissue damage.
How did being an undiagnosed autistic child impact your childhood?
I was appreciated for my quirks, but I did not get the support I needed .
I did not experience any stigma from strangers.
I get to be praised for my spunky energy, creativity, enthusiasm, and focus
I have a lot of energy, so I get to keep up and enjoy various sports training and art classes.
I was unsupported with my sensory needs and my emotional outbursts. I was left to feel ashamed / guilty of not controlling my emotions.
I had frequent unexplained stomach pain (I think this is from food sensitivity)
I feel lonely and misunderstood. I could understand my friends but they did not understand me. I was friendly but have few friends
What ways did you camouflage or mask?
I put up with things I don’t like, and put extra effort justifying my needs.
I hid my true feelings.
I tried to like things other people like. E.g. I go to social gatherings and sit at the “girlfriends/ wives” table, though I find their conversations boring.
I put up with things and didn’t say no because I did not want to be seen as difficult. I don’t express negative emotions, like frustration, disappointment, disapproval, etc, because I don’t want to be seen as difficult or mean, which are 2 adjectives I often get despite all the masking.
I tried to have a heterosexual monogamous relationship, and appearing normal was a part of the reason to being in that relationship.
I over-explain my preferences, and I apologise profusely too
I am really worried about upsetting anyone, so I take extra step to check in with people’s feelings.
How has your identification as autistic changed how you view your childhood or earlier periods of adulthood?
I wish I could go back and tell myself to not waste effort and time on pleasing certain people – there’s no prize for checking all their boxes.
How did being an undiagnosed autistic impact romantic relationships?
I have challenges in boundary setting and receiving affection. So I had unhealthy relationships. And I lack the social support for mental and emotional wellness.
Being autistic in a NT-major world made me much more receptive and accepting of abuse. I wish I was aware of this :(
I could not assert boundaries effectively. When I attempt to do so, I hear the internalised voice telling me I'm being too difficult, too cold, too un-understanding. I overcompensated to avoid those labels.
I did not feel comfortable in my body, and owning my desires and dislikes.
I attempted to will myself to like people that I thought I *should* like, and feel betrayed by my body when I can’t.
I downplay and disregard compliments, and view them all as manipulations. I distrust people who are nice to me and act hypercritical with them. I associate with people who judge me negatively, because they align with my internalised sabateur that I’m broken and less than.
It wouldn’t have worked for me to be with an NT person but I did not know, and so wasted time thinking I have to learn “relationship skills” and feeling like a failure and faulty. (aka “If only I learnt to be normal, our relationship would have been fine”)
Most relationship advice / theory does not work for me. I was left feeling I was “broken” because I am neuroqueer - I don’t experience and express love the same way NTs do.
Talking to Others About Autism
How do you describe autism to people who are not familiar with it?
Being autistic is like seeing the world in 4K HD when everyone else sees it in black and white.
What do you wish others knew about autism?
It’s only a problem because of what you expect of me
Being different is not a problem. How you handle the difference is.
What is your advice for someone who thinks they might be autistic?
Doesn’t matter the label. Do whatever you need to feel supported. Focus less on the diagnostic aspects of things. Spend your time on learning about your needs and preferences, and creative ideas to get those met.
Are there any resources (books, articles, videos, etc.) you would recommend for people who just learned they’re autistic?
Work with a therapist. Living in a neurotypical world is traumatic.
The neurodiversity friendly handbook of DBT skills
Come as You Are
Are there any resources (books, articles, videos, etc.) you would recommend for people who are exploring if they might be autistic?
Take the highly sensitive person (yea, the term might be problematic, but the description isn’t) rdos.net/aspie quiz
Are there any autistic characters in books, tv, or movies that accurately reflect autism? Which ones?
Every individual with autism is different. So we can’t say if any of the pop media (e.g. rainmain) is wrong, because maybe someone out there is just like that.
How do we know if any character is autistic anyway? Maybe all of the Sailor Guardians are autistic? Sailor Moon - poor emotional regulation, easily overwhelmed; Sailor Mercury - studious/ intelligent; Sailor Mars - love rules, nature…
Connecting with You
If someone would like to connect with you, how can they reach you?
Do you have any works, websites, or other creative ventures you would like to share with others?
Thank you for reading. It’s my goal to reach 100 interviews. If you are a late-identified autistic, I would love for you to participate in this series. Please email me at firstname.lastname@example.org if you are interested.