Asperger’s, Bipolar, Experience and Future Occupation

2009-06-28 12.55.52

Lately, I have been talking a lot about how I had “lost” about 15 hours of “free time” due to the kids being out of school and having to work on Fridays now. I am trying to figure out what to do this summer.

“That was my writing time.” Everytime I say this, I feel tearful, frustrated and sad, a little angry. Last night at our local mutual aid gathering, we talked some about the ways that sometimes the world lays it on the line for us, tells us in no uncertain terms what we need to be doing and that it comes down to making the choice between love and fear.

For the fifth time this week, someone used the word “captivity.”

I have been writing, almost as constantly as I usually do, but most of my words have been in the form of effusively honest personal correspondence (which someday I will share as part of a story that I am not telling here) and flat, stifled essay drafts, obligate emails.

“Maybe I’ll focus on poetry? It’s okay to not have time to complete a thought in poetry.”

This isn’t really true and, in ways, poetry requires a more focused and clear headspace than essays. Every poem I have tried to write lately has fallen into prose and I just end up writing about how much I want to leave my job in the mental health system.

“Big Moments”

When I cry in your office
will you call it a Big Moment?

Will you ask me if I’ve been “taking care of myself?”

Will you explain that
it is just not appropriate,
the things that I believe?

Will you say it’s very unfortunate
and that you’re sorry?

Will you say that you thought I had potential?

Will it confuse you
when this statement
about my potential
makes me cry more?

What will I say?

Will I tell you
that my heart is broken?

Will I tell you about
the moment
the very big moment
that I sat on the floor
in the office
where pills are now prescribed
and the way I struggled
to read, to stay awake
and how something
made sense to me
in the word
“worldview”

Will I tell you that
I really did recover
under those lights
and in that room?

Will I tell you that my tears
are not a symptom?

I might cry like I did
a few times before
saying, “Please, please
just fire me…
because I’ve been trying
to quit,
but I just don’t know
what to do?”

Do I want you to make that decision for me?

How would you describe the reasons?

I,
personally,
am thinking about it
in terms relating
to a very basic
“conflict of interests.”

2009-06-28 12.52.46

I went through a similar crossroads a few years ago, when I left my job at the museum.

The circumstances are different this time around.

I have a realistic plan and I am not in the midst of grief or threat.

I have skills and insight that I didn’t have before.

This summer, I am working a little with The Icarus Project on supporting expanded scope and content and collective organizing. I want to write an article on the intersection between Asperger’s and diagnoses like bipolar disorder and schizophrenia. So, I posted this query on the collective’s facebook page:

Hey – I really want to do some writing about the intersection of bipolar/schizophrenia diagnosis and different processing styles (e.g. Aspergers, synesthesia) – does anyone around here identify as having sensory processing, social orientation, and/or cognitive processing differences that you feel like might have something to do with whatever struggles led to you being diagnosed with a “severe persistent mental illness”?

 I really want to talk with folks about this.

 If you don’t feel like posting in comments, feel free to message me or send an email faithrhyneATgmailDOTcom.

 (I’d really like to co-write something with someone, or otherwise be able to present more perspectives/experiences than just my own.)

A couple of days later, a person who identified as a “survivor of many things” made a long-form post asking about social difficulties and introversion. They brought up that maybe they had Asperger’s and asked if anyone else was dealing with similar experiences.

2009-07-08 11.32.42

Here’s a slightly edited copy/paste of my comments on the subject:

Yes, yes, and yes!

I got dx’ed with bipolar disorder, but it’s pretty obvious to me that if I had been born 20 years later I would’ve been said to “have Asperger’s” I mean, I clearly remember stimming when I was a kid. I still stim. I couldn’t speak correctly and went to speech therapy for years. I had to wear specific items of clothing or I’d freak out. I needed to have every color of the fluorescent plastic combs that were sold at convenience stores in the mid-80s. I wore them in a precise fan shape in my back pocket for my entire 3rd grade year.

Other kids were like a foreign species in the way they were with each other. I didn’t really feel lonely, just weird. I never knew why I didn’t really want to spend time with people…it was just so intense…and kind of frightening, because people were so weird to me and kids seemed mean, vicious even. It just wasn’t that fun.

I was deeply in love with my stuffed animals, which I named after tropical fish diseases, because I was obsessed with aquaria and Ich seemed like a perfect name for a bear.

I tried, in middle school, to “fit in” – and it worked some, because I just acted how other people were acting and I was “pretty” and so people “liked me.” It ultimately didn’t last too long though. I only “fit in” for about a year, and then I started to get more and more angry and more and more sad. I got sent away when I wasn’t coping with seeing the land we lived on get developed. I hated change…and had deep attachments to parts of the woods, and so seeing all that get destroyed sort of wrecked me. They said I was depressed and manipulative and put me on SSRIs. Nobody ever said anything about learning or processing differences.

It took me a long time to figure out that I was different, and the ways I was different and to understand that other people don’t experience the world like I do…that nobody experiences the world in the same way…but, that there are lots of other people who experience things in similarly different ways.

Whoa, hey, I didn’t mean to overwrite in this comment box. I just got excited about this post, ’cause I am really interested in talking with folks about this.

2009-06-28 12.49.38

(Later, after the person who initially posted stated that they felt like they were having a “breakthrough.”)

Do you feel like knowing that you process/orient to things differently because of how your brain works might have been helpful to you?

(When I ask this question of myself, I actually feel something that is really close to anger…okay, yeah, it’s definitely anger…because the expectations that were placed on me were based on presumptions of neurotypicality and my struggles were viewed as the result of a “chemical imbalance” and character flaws…at age 12, I was “selfish and immature” when I had to leave the restaurant because the sound of plates and silverware was making me flinch and feel upset…but, I didn’t know that nobody else was experiencing the place that way…I just knew I had to get out of there. At age 18, I was “weird and crazy” when I left the party crying because it was crowded and people kept bumping into me and their smiles seemed so odd. So, it makes me angry that I didn’t know that I was different in the ways that I am…that nobody thought that the differences that showed up in processing and intelligence during the psychological evaluations and school testing meant anything at all. I am extremely logical. I got 2 points shy of a perfect score on the logic and analysis portion of the old version of the GRE. It was surprising to me.)

“I talked the way that people spoke in the books I read because I had no clue how to interact with other people…”

reflected trees

Yes, I totally get this! I inhabited characters for a long time. Books taught me a lot about how people think. Years ago, I noticed that I do this thing where I seem to adapt to whatever manner of speaking someone else has, like I pick up a little of their accents and inflections in the process of talking with them. I think it is a survival skill, trying to fit in.

…because of trying to survive, trying to adapt so that I don’t get hurt, I know how pass in a lot of different ways…and sometimes I am better at it than others. It’s been a stressful month and I have been stimming at work and in community lately.

I have never had much luck with really close friendships or relationship, because people get frustrated or confused by me and I get frustrated and confused by them.

I do have a few friends now that I can totally be myself with, because a couple of years ago I realized that I didn’t want to not be myself anymore and that I needed friends. We talk about neurodiversity at our local Icarus group and I have started to make “transparency agreements” with people who I want to be friends with, a process by which we agree to be honest and non-judgmental about how we feel and what we need and what we’re thinking. I inform them that sometimes I just can’t hang out, because I have extremely low social needs, and that it isn’t because I don’t care about them or don’t want to be supportive of them, but that sometimes I just can’t be around people, that I need to just be quiet. I only spend time with people who seem to understand not wanting to go certain places because they are too loud and who understand that it’s sometimes hard for me to talk on the phone, because I can’t hear well on cellphones.

For me, social pressure and people taking what I need to do for myself personally and being angry with me about it is not “safe.”

Looking back at my various crises, I can see that a lot of my distress was related to stress vulnerability, change, loss, and a deep sense of alienation. When I really “lost my mind” a few years ago and began obsessing about patterns in nature, synchronicities and metanalysis, all following a period of profound psychosocial trauma…the doctors said that I was “psychotic” because my “chemicals” were “imbalanced.” I think that really it was just the person I was before I had to learn how to fit in rising up and being honest, because I have to be…because if I lie, I experience serious dissonance.

2009-07-05 12.22.32

It’s funny, because at the time of my last hospitalization (ever), I had figured out at that point that I process things differently and the records from that hospitalization note that I told them I was having a hard time because of grief and psychological/emotional abuses in the family and that I told them that I was “very intelligent, and an artist and that people just didn’t understand.”

…and they called it all “delusion” and “grandiosity” and pulled down my pants and gave me a shot.

How many people do you think get pegged with severe and persistent mental illness because they experience the world differently and nobody has bothered to support, affirm, or accept them in that?

To me, this question feels really important.

I don’t identify as having Asperger’s, because I guess I just think about myself as being a person with cognitive/sensory/emotional processing differences…and “Asperger’s” carries just as many assumptions as “Bipolar,” without really saying much at all about the individual and leaving a lot to the imaginations and associations of others. I guess if I had to choose between the two labels, I’d choose Asperger’s…but, it’s not a great fit either…and I don’t really want to take the name of some European man from the 20th century.

Thanks so much for starting this thread…I know I have been long-forming these comments to death…but, I am just so eager to be having these conversations.

I wonder if, on the day after your breakthrough and realization, you feel differently than you did yesterday?

For me, it was like all the sudden everything made sense…but I was also really angry and really sad that I’d had to put up with so much hurtful and confusing bullshit over the years, that foolish and ill-informed people had written me so wrong.

???????????????????????????????

This morning, I told my kids that I was considering putting in notice at my job, because it didn’t feel like a good fit anymore and I have an increasing sense of deep ethical conflict about my involvement in the formal mental health system. I feel constrained from pursuing thing that might actually help us to have more resources.

“I can just finish school and live on student loans, maybe I can figure out some way to write a book.”

 A lot of people talk about writing a book, but I think I actually could.

In fact, I am pretty sure I already have…it’s just a matter of finding it amidst so many words and putting it together well.

2009-06-28 12.55.30

3 thoughts on “Asperger’s, Bipolar, Experience and Future Occupation

  1. Pingback: I want this more than life – Beyond Meds

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