Welcome to my series Disability Profiles, where I interview people from all walks of life so you can gain a bit more insight into what it’s actually like to be disabled, neurodivergent or chronically ill. My aim is to help dismantle the stigma of difference, to wipe away pre-conceived ideas, to open minds to the fact that being successful and happy means something different for everyone.
@iamzephoenix
My name is Phoenix, I am 44 years old and live in Oakland California. I am originally from Berlin, Germany but have lived in the US for 15+ years.
In terms of gender, female is still the most accurate, although I jump back and forth depending on the time of day, etc. Basically, any definition of gender can be accurate or inaccurate depending on where and when you ask me. Good news is, I'm not offended if you "get it wrong" :)
I identify with the term autistic. But I'm still having difficulties claiming the term, as I self-diagnosed about 3 years ago and - while I feel strongly this is my truth - have been questioned a lot along the way.
In terms of diagnosis process, I am still in it :)
I am - given self-doubt, (internalized) ableism and strong needs of categorization - still debating whether I need or even want a diagnosis. The older I get, the more I am realizing that some minor accommodations (at work) would be really helpful in terms of NT expectations on my work, my timing, etc... I guess masking only goes so far.
How has your condition affected your employment, friendships, relationships, and
general way of life? Good and bad…
This is a difficult question to answer.
I feel like both my pattern thinking as well as my very detailed "I-can't-just-half-ass-ANYthing" really helps with the way I work and with my job profile (Product Management). At the same time I'm having difficulties being always and consistently productive. The very operational nature of my work can be difficult to follow because some of the work can't wait until I am back in my "productive phase.
I think my autism is partially the reason my ex and I ended up divorcing, but I am not at all sad about that - lol.
I also think my autism is (again - partially) the reason my partner and I are together and work so well together, so again - not at all sad about it.
What are your special interests and/or passions in life?
Drawing, art in general, and graphic design (color theory and typography)
Psychology, Mental Health and interpersonal relationships.
Skateboarding.
Hip Hop and Rhyming structures.
Culture, Language, and slang.
... and so much more. (Basically - when I do something I have to "get into" it to even be able to do it... like... if I start running, I collect every data point about my running experience, including the usage per mile of the shoes I wear or if I start yoga, I learn every pose including their origin, story, Sanskrit word and physical impact, etc) My Favourite way to spend the way would be-
Coffee
Walk/Bike Ride/Nature
something creative or productive (Garden, Art, Errands, Cleaning, Organizing, etc)
Eat clean food
Eat carb-ey or sugar-ey food afterwards
Sit outside as long as possible and enjoy the dusk
Bath
Bed
I like to spend the day alone or with my kids or partner.
The thing I struggle most with as an Autistic person is my overwhelm, or melt-downs. Or shutdowns. Or burnouts.
I haven't quite figured out what is what but I feel like sensory overwhelm is quite pervasive - especially during this Covid time, in which I parent, work, teach all at the same time in a small space with 2 very wild kids. I also struggle with the social pressure of "having to be social". Most of my friends know that I am not too social and can't handle large groups. But while they tell me that everything is okay about being "this way" I can sense exclusion and change in relationships.
The fact that I self-diagnosed well over forty years old means that for decades I have pushed myself through social situations that left me exhausted, uncomfortable, panicky and like I had broken my own boundaries. Now that I know, now that I stand up for what I need, I feel a shift in my relationships. Gladly I can say, not all - I have amazing friends who accept that reaching out differently (or more persistently) may be part of a package deal.
I am both sensory seeker and sensory adverse. Definitely both. All of the above :)
Adversities:
Too many auditory inputdrive me into complete overload.
I have - no idea what the correct term is - "spatial issues", such as too many bodies in a space, people too close to me, people "in my face", kids moving randomly through space or being in a space that feels random to me. If I don't understand the spatial make up of a place (a house, a room, an office, or a store), then I will try everything to get out of there.
Another issue is light... brightness is not an issue, but random lights (flickering, etc) throws my equilibrium off.
Too light touch. Ugh.
Seeking:
Squeezing, strong touch, massage
Any kind of pressure or heat > daily bath and weighted blanket are becoming a must.
Stim:
I squeeze my hands, my arms, my temples, I rub my face, my eyes, my chin.
I have my kiddos kick the heck out of my back or jump on my back (win win, lol)
I recently started EMDR for trauma responses and it feels amazing.
I hate that I do it, but I pick my nose all the time (not because I like picking, but because I hate the feeling of having shit up my nose)
I love how deeply I think. I love the way I think. I can't imagine not thinking the way I think or not having the access to the abundance of connections and associations I have. I also really like how deeply I feel. I am highly synaesthetic and empathetic and "see/feel" things others don't feel. This is - as we all know - both a blessing and a curse and I remember many times during which I have wished away this ability, but I think - if I could choose - I'd keep this sensitivity.
I don't believe that autistic people are not empathetic and take offense to it.
I also personally have social perception skills that do not at all match autistic stereotypes (which is by the way the reason I never got diagnosed as a kid). I am highly perceptive, look people deep in the eyes (even though I am not super comfortable with that) and create social connections in a way that does not match the autistic stereotype. But let's be clear: I don't think this makes me less autistic or makes me more "functioning", I think the stereotype is antiquated and my female socialization have a lot to do with this.
I have many stereotyped Autistic traits, as well.
The talking-a-lot, the tummy issues, the counting steps, hand/finger stims and the living in my own world...
But coming back to empathy... the stereotype says, "autistic people are not empathetic or don't feel as deeply or something like that". My reality is that I get a lot of shit for the way I express my empathy. I am solution focused. If I have a solution for a problem someone presents to me, I will suggest the solution. Realizing over the course of my life that this does not make friends. People get really mad at you and I have gained the reputation of being a smart ass and a bragger when I actually just want to help.
Some things I wish people understood about Autism:
That we are neither intellectually disabled, nor mentally ill because of our autistic selves. We may experience mental health issues because we don't get enough support.
That we're not attention seekers or "drama queens" when we are having a hard time.
That I'm not an asshole.
Definitions:
Synaesthetia- is a perceptual phenomenon in which stimulation of one sensory or cognitive pathway leads to involuntary experiences in a second sensory or cognitive pathway
Neurotypical- not displaying or characterized by autistic or other neurologically atypical patterns of thought or behaviour.
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