"I'm autistic!?" with Jamee pineda

[The Decolonizing Medicine Podcast S01E08.  Original release date December 18, 2021.]

Jamee Pineda: Hi, you are listening to The Decolonizing Medicine Podcast.  I'm Jamee Pineda, a queer, non binary trans person and a practitioner of Hilot and Chinese medicine. My ancestry is
mostly Tagalog and some Chinoy, but I was raised here on Turtle Island.  Everyone's experience with autism is unique. So I encourage you to listen to many people's experiences, especially Black and Brown, queer and trans folks, because we are often overshadowed by white dominant narratives.

So I'd like to announce that for the full moon on Saturday, December 18, I will be releasing
a free phone wallpaper.  Recently, I've gotten really into making digital collages.  And I'm so excited to share those with people so that will be available on my website along with my zine shop where I have both a water element and my metal elements zines up and available for download and they are priced in a sliding scale.  So pick what works for you and your community if that. 

So my one caveat for Chinese medicine telehealth is that I'm going to let my DC license lapse
because I don't feel like it really makes sense for me to continue having a license in two states. So I won't be able to see folks in DC but I am maintaining my Maryland acupuncture license. So this only applies for folks that want to see me for Chinese medicine, if you're interested in doing
one-on-one work for Hilot that is not under this licensure so I can see anyone anywhere and all
of the appointments are digital.

I found out I was autistic on accident during a couples therapy session where we were
talking about different communication styles. And the sweet sweet therapist brought up very gently that we might have some neuro divergence to think about and for me, specifically, autism, and how that was showing up with how I relate to other people, how I communicate, how I think about the world. so being left out of consideration because I don't fit a lot of those
none of them, except for this most recent one, had even brought that up to me. And here's where we see that intersection with places and medicine that we need to decolonize because if we're only studying, like little white kids, and we're only getting treated by folks who are white,
and cis, which all of my therapists have been white cis women, except for the exception of like one person, people are gonna fall between the cracks. We are not accounting for the experiences of folks who will pretty much anyone who's not a white dude, we're not accounting for that experience. And we're not accounting for ways in which we might adapt, so that we can survive and so that we're not showing these traits that otherwise would have been recognized.

How my life has changed since learning I'm autistic, a lot of it hasn't changed. Because, you
know, I, I have developed a lot of skills in in how to live in my neurodivergent self. Being 
self-employed is one of those things, even though I didn't realize that I was doing it for having autistic needs.  Being self-employed is really helpful because I can create my environment however I like. And living with less housemates is really helpful, not because I don't like the housemates that I've had in the past, but because I need lower stimulation environments.  That's really helpful for me. So and also, like, I already have an ESA, an emotional support animal, that's been helping me. So there's already these, these things in place, that I've automatically learned how to how to cope with, with the way that I think and interact with the world.  Even phrasing it that way makes it sound like that I would view autism as a disease and I really don't. I really view it as more it really is a, to me, it's a natural variance that is just not favorable to have in the context of a really capitalist, white supremacist and patriarchal society.

Some of the things that have changed, are having to do with my past relationships to some of my medical providers. And, and we like there's like a re-mything that's happening, where I've had a lot of trusted medical providers who just were not competent in catching this. And to realize that I had been falling through, like, these little cracks in their care I was falling through. That's kind of heartbreaking to realize I was getting inappropriately treated because my traits
weren't being recognized. Makes me really sad it even though at this point, I have been able to
create coping mechanisms and create environments that are really supportive, that didn't
come easy, and it didn't come fast, there was a lot of suffering in building those things for myself. And also, let me just rephrase building those things for myself. Like they did not come prepackaged. I didn't step into it. It's a lot of learning on my part, by trial and error.

It's also being able to develop relationships with people who are also neurodiverse. I'm queer and trans. And there just happens to be a lot of queer and trans autistic people and other folks
with different neurodivergent presentations. And so within community, I feel like there is a culture of trying to meet people where they're at and understanding that we all have very different experiences. And, you know, the people that I keep company with, we try not to make
assumptions about people's experiences. So I've learned a lot from that as well.

How it's changed in the present moment is seeing the parts of my life that have been a huge struggle and understanding why, having more clarity on why those things have been difficult. So for example, what in running my own business in my own practice has been difficult. For me it has been, like the constant engagement with social media or having to to be constantly building social relationships, social relationships with people, and being like really public in a certain way. That's really hard.  That takes a lot of effort for me and not just like in an
extroverted or introverted way, like being an introvert within an extroverted world. I mean, it's, it's the fact that I do mask with some of my communication, where I try to sound more neurotypical and in my inflection, I try to listen with like a very attentive face.  For people who are much closer to me, like my, my, my inflection is much more flat, I don't smile that much.

I have had the wonderful privilege of being able to work with professional photographers for
my headshots that make me look really smiley. And that's actually not how I am most of the time. Like, I look pretty grumpy almost all the time. And I didn't realize that, that the resting bitchface was really, actually a clinical trait. If I look back at the pictures of myself from, from childhood, from like infancy to now, like I have almost the same face in every single picture. And it's because I don't actually have that many facial expressions.

So so yeah, certain things are hard. And now I'm like, has been hard and now I have a better idea of why, which means I can then make different choices. I can choose the things that I that might be hard that I feel like I just want to keep pursuing. And then I can also make better choices about the things that are always going to be hard that I'm like, nah, I'm not going to try, I'm going to do something else.

Oh, the cat just jumped on me. This cat is the emotional support animal for my emotional support dog.

And, like, other other ways in which finding out I'm autistic has affected me is in trying to find providers that can actually work for me. So trying to find someone who is competent with working, like a mental health therapist, try to find one that is competent with working with
someone with autism that's not going to treat it as a disease and not be super fucked up and
ableist.

And on top of that, I would like them to also be, you know, not transphobic and not
racist. Like, it's kind of hard to find providers in general who are going to have a shared values with me around racial justice, health, justice, decolonizing medicine, like these are all - it was already hard before to find providers that I felt were safe to be around and this is another this
is another layer that a lot of people are very adverse to working with.

And on a more personal level, it's been really great exploring what autism looks like in my life and learning from other creators on social media. Specifically, under the #ActuallyAutistic, like learning, learning about folks, and their experiences and the ways that they have adapted to their world and the ways that they also choose not to adapt to neurotypical world has been incredibly eye opening for me. 

And there's a lot of support out there that people are just making within community that I think is really wonderful. And it's already improving the ways in which I relate to other people, the ways in which I communicate with my partner, which is really wonderful. They were already super - they had already suspected that I was autistic for a while. So it's not so much of a surprise. I was the only one that was surprised during that therapy session.

But yeah, like it's, it's, it's good. It's good to know and it is, it is hard. I have a lot of grief for recognizing the ways in which I wasn't cared for. And then also feel really excited about the ways in which I'm seeing other autistic people care for each other and do advocacy within their
communities. So, I mean, that's a good thing to me, that's all part of decolonizing medicine is
making sure everyone feels cared for and everyone has a place.

I have been thinking a lot about the connections between autism and decolonizing medicine. And, well, I have a lot of thoughts, it's, it's a little bit overwhelming on which parts to which parts I should highlight.  But, um, I mean, one of them is like, who gets left out of diagnoses and who gets left out of care. And on the flip side of that, who gets left out of being in caretaker, like professional caretaking roles, if it's like, if all of those things are catered towards white folks, I
mean, that's a problem, right?  Like the pathology, and the diagnoses of everything is oriented towards a certain group of people to the detriment of others. So there's that which is kind of like the most obvious surface level intersection that I see with with decolonization work and applying it to autism diagnoses.

And the second thing that I've been thinking about is, since all these white people set what is neurotypical and then what is neurodivergent, I mean, that is that is dependent on white culture. So when we're looking at different cultures, I mean, if I think about mine, if we're looking at Filipino culture, Filipinx culture, what is considered typical and what is considered not typical isn't isn't going to be the same. You know, like we don't like even within my own family. I was
never raised in a way where I really prioritized eye contact.  And so I just didn't really It didn't occur to me that eye contact would be something that might be really uncomfortable, because it wasn't, at least within my family, forced to do it. And I didn't realize that I sometimes avoided eye contact until I was in high school when a friend of mine made fun of me a little bit because she was trying to talk to me, and I just couldn't look directly at her face, I kept looking everywhere else except that. And so and, and for those of you who don't know, eye contact avoidance is considered one of the, the classic traits of folks with autism.

So, yeah, like, what would even be considered neurodivergent in other cultures? And does that mean that those other cultures are maybe just more inviting of the natural diversity of human experience, the natural diversity of our brains? You know, like, we, we could be living in spaces that were like if we if we were able to live in, in places that were supportive of us, in all of our
different wonderful traits, autistic, and otherwise, like, how would medicine be different?

Another thing that I would like to point out about this autism experience for me is that I sort
of am diagnosed and I'm sort of not diagnosed. So I'm going to break that down a little bit.  Being autistic was something - the animals are, are running up and down the stairs to get
dinner right now. So my therapist is the one who brought up being autistic to me, but that does not count as an official autism assessment. So even though this person has been working with me for I think two years now close to two years, pretty consistently, like that is not valued the same as you know, going in for an official assessment with an assessor and taking like a five hour exam. So on an official medical diagnosis, that is, that is not that doesn't count. So I am sort of diagnosed.

And on top of that, after reading a lot of literature, I'm going to back that up and say, I'm also self-diagnosed. This is another part where colonization and ableism and capitalism, and all of this stuff and racism where it all is intersecting and affecting people.  In order to get an official autism diagnosis it usually, like in my area, or around Baltimore, it costs around $2800, completely out-of-pocket. There's pretty much no insurance coverage for that. So if you are one not have very much financial means, or you don't have some ridiculous job that will pay for an adult assessment with insurance, by the way, most most, is like in order to get that covered, it's
usually for like children of autistic children who were under the parent's insurance, it's not
something that is accessible for adults. So you have to have a lot of money or like some ridiculous, ridiculously lucrative job to make it financially accessible.

And you also have to be someone who is like, who's who's able to identify themselves or be identified by other professionals, as someone who might be autistic. So if you're a person of color, if you're queer, if you're pretty much anyone except a white cishet boy, you're in a situation where you're going to be easily missed, as far as recognizing autism.

And also, if you're an adult, like if you are an adult, you can be easily missed as well. So, like we have multiple structural oppression happening here that prevents people from getting an "official" autism diagnosis. And so it is really important to have those to have those supports accessible to people. And that's why like, it's been so great to see all of the content being put out by people who are actually autistic. And that has been, at least in my experience, so far,
like pretty welcoming to people who might not have an official diagnosis, because it's not actually possible to get for a lot of us. And that doesn't mean that we, you know, shouldn't
have the different supports that we might want or need.

I think that the decision to get a diagnosis is a very personal one. I have been looking into getting it for myself for a couple of reasons.  And one of them is to maybe get future job accommodations. To just make being in the workplace a little bit easier. I work from
home for my own personal practice, but then I also work in a clinic outside of that. And the other accommodation that I would like to mention is for school, so I'm applying to grad schools, it would be nice to have support from like, Student Disability Services. And, you know, like, I also I get nervous that other providers won't take autism seriously with me unless they see that it is officially assessed by an autism assessment professional.

So, like I'm a trans person, I have a lot of experience of people just not believing me or not being
competent in my care. And this is one way that I'm trying I mean, I know that doesn't guarantee that I'm going to have better care necessarily, but it is another possibly another layer of protection as far as medical visits go. So, we'll see, we'll see if I if I am able to get that assessment in the future. But regardless of having that, like I'm fucking autistic. 

So for folks who want to stay connected to my work, I've got a lot of things going on. As per
usual, the best way to find out about what is up and coming is to sign up for my email list.
The email, the email, the monthly email, lose news, I almost said loser letter. It's not full of losers, everyone in there is amazing. My monthly newsletter is a great way to stay connected because I don't have to deal with algorithms that creepy Meta has put up on Instagram and Facebook.  You don't have to deal with like getting stuck in a doom scroll.  It's a little healthier for folks. And I just get, I'm able to curate my content so you can see it all in one go and you're not having to like filter through a bunch of different posts. So email is one of the best ways to stay connected with me. And I'll post my link tree in the show notes and that has my you can subscribe on the
email list there.

I also recently opened up my digital zine shop, so I'm getting back into making visual art through digital collage. And those are those are part of the zines. So hello, special interest. Nice to see you again. I did a lot of art when I was younger and then because capitalism I stopped
doing art and tried to do real jobs but turns out I need to continue doing art just for my own well being. But the zines are really themed around different kinds of traditional medicine, specifically Chinese medicine and Hilot, which is medicine from the Philippines.

My next episode after this is going to feature Kalei, Kalei'okalani Matsui from Huraiti Mana, who is an amazing dancer and dance instructor and cultural worker. So that's, that's an episode I'm really looking forward to.

And if you are enjoying this content, if you're learning something, or maybe you just realize you have excess resources that need to be redistributed, you can always go to my Patreon: patreon.com/jameepinedahealingarts. So you can go there support this work. The patreon account not only supports making this podcast, it also supports free and low cost classes for QTBIPOC to learn skills like Qi Gong, and it also helps with captioning for these podcasts as well to make them a little more accessible.

This episode's community shout out goes to Asiatu and Mairi from the Audacious Autistics
Podcast, I found this podcast on #actuallyautistic on social media. I've been learning a lot from other autistic content creators which has made my process so much easier. If you've got a little extra to spare this season, head over to patreon.com/audaciousautistics and support Asiatu and Mairi's work.

I really encourage people to go out there and do your own research around neuro divergence, don't just read the studies that were written by people who are not - who are neurotypical writing about neurodivergent people. Seek out the content that is written by those folks who have those diagnoses. So #actuallyautistic is one of those things. There's also #actuallyADHD, but like, listen to those stories. Just like with anything else go to the source of who was most
affected by these things, by these issues, who is the most vulnerable in how our medical system is operating right now. So those are incredibly informative. People are very, very generous with sharing their experiences and educating other folks who are not of their experience. And also if you have extra money, give them money because they're creating content for free for the benefit of all of us.

Maraming salamat for listening to The Decolonizing Medicine podcast. If you want to support
this work via Patreon, or apply to be a guest on the show go to linktr.ee/JameePinedahealingarts and that's linktree spelled LINKTR dot EE slash Jamee Pineda healing arts. Music is by Amber Ojeda, hed kandi, and Rocky Marciano. Big thanks to Laurenellen McCann.  They edited the podcast, fed me questions during my recording, and kept me on track during such a vulnerable episode. Last but not least, thank you to all our listeners and supporters out there. Ingat!