Tuesday, February 24, 2015

: That Time My Favorite Aspie Author Jenny McCarthy'd Me and Ruined Everything

Recently, I stumbled across a blog post by Rudy Simone, an esteemed author on the Autism Spectrum, entitled "Why I No Longer Identify Myself as an Aspie." Horrified, but intrigued, I set out to read it, my heart dropping in disappointment with each paragraph.

She reasons that because her symptoms have been "managed," and because she's eliminated gluten and nearly all preservatives from her diet that she's essentially cured herself:

"I tell them that I was on the [A]utism [S]pectrum but no longer feel I have enough traits to identify as such. It’s not that I’m embarrassed, I was a loud and proud [A]spie, but honestly, I truly don’t feel [A]utistic anymore, just strong, unique, awkward at times, a bit eccentric I guess, a little gifted and trying to make my way in the world like all my brothers and sisters, on and off the spectrum."

Now, far be it from me to criticize how folks want to self-identify, but so much of her reasoning is problematic. She essentially boils an incredibly complex neurobiological condition down to a "gut issue," and criticizes spectrum folk who don't follow her dietary example, quipping "You cannot heal the gut with Taco Bell, donuts and [R]amen noodles." She's not necessarily wrong about how our diet can exacerbate certain symptoms--the link between gastrointestinal problems and ASD is pretty well-established--but the blasé way in which she approaches the issue is extremely classist.

From her own research, she estimates that roughly 85% of the adult population of Aspies is underemployed, and wholesome, nutrient-dense foods are not cheap. If we don't have adequate support systems or financial means, most of us can't afford a "whole food" diet, and not all of us would choose it even if we had the means to. Time is a huge privilege as well--if you're working overtime or more than one job in order to make ends meet, chances are you don't have much time or energy to do extensive meal planning or preparing. What we put into our bodies is our choice alone, and it really takes a lot of nerve for someone who should be an ally to shame folks who don't make the same choices they do based on an extremely reductive "Autism is a gut issue" argument.

Unsurprisingly, her article got a lot of heat from her readership and fan base. She wrote a follow up to her original post, arguing that because she followed her own advice from the books she wrote, her traits were "minimized" to the point where she "can meet new people and spend days with them and they have no idea [she's] on the spectrum." I guess maybe she forgot that a major characteristic of women on the "high functioning" end of the Autism spectrum is that we are better able to blend into social situations--that we're social chameleons, as ASD expert Tony Attwood described us. There's a particularly strange moment where she lashes out at her critics by stating: "It just doesn’t make sense that you don’t want the information to work for ME. Or that you want it to work, but not so well that I don’t feel qualified to use the label anymore. We’re really splitting hairs now. Frankly it’s nobody’s business what I call myself."

Now, I didn't read any of the comments on her post, so other than her general descriptions of the responses, I don't know exactly what folks' reactions were. I can't speak for anyone else, but my own reaction really didn't have anything to do with her information or tips "working" for me--it's the idea that she thinks Autism can be cured (Jenny McCarthy much?), that it should be cured, or that curbing or "fixing" some of our more obvious traits is a desirable thing. I'm not necessarily saying that Aspies shouldn't challenge themselves to grow and change, but I think it's extremely crucial to examine why we're changing or modifying our behaviors. Are we doing it for ourselves, or is it for someone else--our guardians, our partners, our families, our friends--or is it a survival tactic in order to function in a neurotypical world? I think we Aspies see so much of this "lessening AS symptoms as desirable" trope so much in our culture--on television (the character arc of Temperance Brennan on Bones, the relationship dynamics between Sheldon and all the other cast members of The Big Bang Theory), in movies (What's Eating Gilbert Grape, Forrest Gump), in fiction and nonfiction written by neurotypicals, as well as groups and organizations that purport to speak for us--that it becomes incredibly hard to swallow from someone who is one of us.

No matter how much you grow or change, no matter your diet, no matter what texturelicious items you pack into your sensory management bag, it doesn't change the reality of your brain chemistry and synapses. Maybe the delineations between NT and AS aren't so clear cut (and so much of how we qualify and quantify AS behaviors is arbitrary anyway), but I think it's extremely disingenuous, almost dangerously so, for someone to say that they've cured themselves of their Autism. Even if it is a personal decision to self-identify as you choose, it has real consequences socially and politically, particularly if you're someone of note within the community. Her books saved me in a lot of ways, particularly Aspergirls--she wrote with wisdom, experience and compassion, and helped me to voice things that I had previously be unable to communicate in my relationships. It's difficult for me to not feel betrayed by her "cure"; I don't wish to be overdramatic, but I am really struggling to retain respect for someone who has essentially turned her back on the AS community. Saying that your Asperger's is "cured" isn't growth--it's assimilating yourself into inspirational ableist tropes about "overcoming" disability, and it’s a blight on all your work within the field.

It's bullshit. And the Autism Spectrum community really doesn't need any more of that in their lives.

Tuesday, February 3, 2015

Life is a Battlefield

So, last Thursday seen me cruising (read: terrified and white-knuckled) up I-79 for an appointment that had been my lifeline for the previous few weeks. My AS therapist had helped me to set up an appointment with a Nurse Practitioner (this is basically a follow-up from my last blerg post), and I braved 80 treacherous miles of unplowed highway because I was scared of what I might do if I didn't get in to this appointment.

Turns out, major waste of time, gas, and certainly not worth the risk of my life and limb and Prudence (my car).
Upon arrival, I had to fill out the usual million pages of HIPAA forms, as well as patient history.
I always chuckle to myself when it asks for the mental history of my family, and I usually just put "everyone has everything," as it saves much of my time.

So we're into the nitty gritty of the visit, and I notice how she keeps calling my decision to not take psychotropic medication into question.
"Now, tell me specifically why you won't take any medication?"
[All of my reasons, including one of the most horrifying experiences of my life where I forgot where I was and who I was while on a fairly low dose of a psychotropic medication, and also the fact that I've been run through the gambit of SSRIs, SNRIs, etc., even diabetic neuropathy, and all it does is wreak havoc on my brain.]
"Okay, but I still don't understand why exactly you're not taking these."
[Also mention that I've done extensive research into the side effects, as well as participate in chronic pain forums where people tell me all of their horror stories about year-long withdrawals from Cymbalta and similar medications.]
"But WHY."

So after that long, tall glass of Waste of Time, I went to my mom's house in Erie to decompress.
In going to that appointment, I had made the decision to pay my rent late.
Because see, when you live in poverty, you have to make those choices--do I see my doctor or pay my rent; do I buy food for myself or food for the cat (cat, obvi.); do I buy gas or do I pay for my medications.
I don't even have it as bad as some other people, and it's a fucking nightmare.

Luckily, I think the Nurse Practitioner felt sorry enough for me that she didn't charge me a copay at the time (though I am holding my breath for a bill in the mail), so I was able to pay my rent only ten dollars short, and did not incur a fee.
Ever wonder why renters will charge you $25 a day for being a day late, but they don't actually cash the check until the 5th or 6th?
I digress.

So as I was explaining all of this to my mom, she starting telling me that I don't appreciate what I have, and how I'm always negative.
After everything that had happened in the past three weeks, the constant laying on the floor in a heap sobbing, bursting into tears at work because of the pain, and the general feeling of no longer wanting to exist, I snapped.
Like, super snapped.
I've never sworn at my mother--I find it extremely disrespectful and distasteful, even in a joking way.
But I screamed FUCK YOU at her, twice, before I even realized what I said.
I don't even remember what she said afterward, but she went upstairs and I drove back to Sharon.
Basically sobbing the whole way and wishing I was dead.

Then I got pissed.
Generally, I'm usually pretty pissed because I exist in the world and it is so hurtful and terrible.
I react viscerally to things, so I have to be really careful about what I let in, because I feel so much and so deeply, even if I can't always verbalize it.
It was kind of a good pissed, though.
The kind of pissed that gives you the fire to be all, "Fuck this situation, this bullshit ain't gonna fly anymore."
The kind of pissed that's like "Fuck you world, you are trying to swallow me whole, but you bitches are gonna CHOKE on me."

So now I actually feel pretty good.
As good as a person who constantly feels like they've been hit by a bus and set on fire could be.

My mom messaged me this morning saying that she loved me and that we needed to get past this, so I figured I'd share my response here.
I was a bit weepy towards the beginning, but by the end I was all I CAN DO ANYTHING (!).

So here it is:

I love you too, and I'm sorry I swore at you, but I'm not sorry that I had an outburst. Your perception of me as "being negative" when I discuss my health issues is like being kicked when I'm already down; you're really not involved in my health care management (beyond just being able and willing to keep me on your insurance, which I of course appreciate) so you really do not understand the level of stress and discrimination I come up against when I try and advocate for myself.

Being kicked off a treatment program twice for NOT ACTUALLY ABUSING A DRUG is just the tip of the iceberg; I'm forever struggling with communicating my level of pain and distress to doctors, who by and large view me as a malingerer and a potential legal issue. By virtue of just BEING WHO I AM, I am treated like a criminal. You may have chronic health issues, but you clearly don't understand how political my condition is. You might be able to say things like, at least you HAVE insurance--but you have no idea how precarious that really is. I have to fight tooth and nail every goddamn day for just really basic shit, and it's exhausting. I am ALWAYS tired. I'm twenty five years old, and I am already exhausted from living because I have two invisible conditions and very little resources available to me. And I realize there are people who have less than me, and my heart aches for them. But that doesn't mean my problems are lesser. By that logic, no one should be allowed to be happy, because there might be people in the world who are happier. It's ridiculous.

An even bigger issue is that I *know* what I need to manage my health, and I can't have access to it. And I'm not even talking about Percocet, although that's proven to be effective for me. I'm talking about swimming, yoga, exercise and massage therapy, and better nutrition. These are the things I know I need, but people keep trying to push goddamn poison on me (and yes, medicine works for a lot of folks, and that's great. It DOESN'T work for me.) Unless you have ever experienced forgetting who you are and where you are, which happened to me while I was taking Abilify, which is in the same class as some of the bullshit they want me to ingest, you will NEVER understand how HORRIFYING it is to be in the middle of nowhere and not knowing your name or how you got there. That was one of the scariest moments of my life, and I would rather feel knives all over my body than ever experience that again. You think you hate phone calls? Try having Autism. I know the world doesn't give a shit if I have Autism, and I have to do it even if it gives me knots in my stomach, because I have to advocate for myself because no one else can. I have called SEVEN different places to see if they had a pool--schools, YMCAs, etc. There are none around here, and the one that I COULD go to I can't afford, and they won't extend me the college rate, because believe me, I tried. I have had to put off medical appointments because I cannot afford them, because I have to make a choice between having a place to live and being able to see the doctor, even with you helping me out financially. Having fibro and Autism and being low income is like climbing up an active volcano in swim fins. No matter how hard I try, I keep getting beaten down, and the people I'm supposed to be able to trust don't take my concerns seriously, because they have the arrogance to think that they understand my brain and my body better than I do. That is inherently a political issue. My life is literally a battleground. I don't understand how you don't see that.

I've basically given up on doctors. Insofar as other medical issues go, I'll get treated by them, and I will have to continue with Tramadol, because it's my only lifeline. But it wreaks havoc on my system. If it weren't for my desire to make the world better for other people like me, I probably would have checked out long ago. I keep fighting because I have to believe that someday my struggles will help someone else, in the same way that reading memoirs of people with AS or depression have been my lifeline. I know I'm going to be okay one day, that I'll be able to manage well enough to support myself, and maybe some little ones, I don't know for sure.

I also fight to spite these motherfuckers who run the country who exploit the most vulnerable in our population. Maybe I come off as negative to you because you don't understand the fight I'm in, or you don't care to see it because you have the luxury of being complacent, I don't know. I could see you being jaded about the system--it seems like all the bullshit will never change. But character and victory are born of struggle--if we didn't struggle for the right to vote because it was "just the way it is," if we didn't struggle for the right to our bodies, the right to have access to reproductive care, for equality in the workplace, for representation in popular culture and literature, we wouldn't be where we are now. Even if it's shitty, it's better than it was, and we can be part of that change, even if it's painstakingly slow. Our system is rigged to make people fail and it's totally unfair, and if these motherfuckers think I'm going to take it sitting down, they've got another thing coming--I'll make the fuckers choke on me.