On the Aspie Side

ASD & Violation of Basic Human Rights

I have been reading quite a bit on human rights and disability both in the media and in philosophy, and I am appalled at the power the label “disability” has alleviated human beings of their agency and their rights.

brain-marionette

Human rights are defined universally by the UN with specific charters for women and the disabled. I urge everyone to actually look it up themselves. And, please note as well the countries that didn’t sign, didn’t ratify, and/or put tons of caveats.

The basic point is that each human is just by virtue of being human is entitled to universal rights.

The principles of the present [disability rights] Convention shall be:

  1. Respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons;
  2. Non-discrimination;
  3. Full and effective participation and inclusion in society;
  4. Respect for difference and acceptance of persons with disabilities as part of human diversity and humanity;
  5. Equality of opportunity;
  6. Accessibility;
  7. Equality between men and women;
  8. Respect for the evolving capacities of children with disabilities and respect for the right of children with disabilities to preserve their identities.

Here are some of the ways in which Autistics have faced human rights abuses at the hands of their caregivers and the public:

  1. Obsession with Cures/Pre-Natal Testing/Anti-vaxx: Hate of difference. This kind of crap LGBTQI also went through. Can we cure it? Fix it? Prevent it? They even get angry at Autistics for speaking out against this hate because we “clearly can’t understand” what the parents and their kid are going through, mostly the parents. They want to wipe us out of the gene pool by any means necessary, including refusing their NT child the life-saving properties of vaccines that have literally no connection to Autism whatsoever. Why? The medical profession has made billions on the idea that Autism is a disease that they could cure, but even they are now saying they cannot reduce Autism to a single cause or magic bullet product. The move inevitably will be toward acceptance, and hopefully a treatment for the worst co-morbids.
  2. Freedom to Have Independence Often Barred: Our ability to make choices and have independence is often tied to our diagnosis. We’re either denied rights because we haven’t been diagnosed, unemployed, and are stuck under the control of family or diagnosed and on disability, or can’t seem to get out of the cycle of bad employment followed by no employment. All of the above infringes upon our ability to lead productive lives. Granted the other end of the spectrum is a bit less and less able to make free decisions, but it should be fostered to the best of their ability.
  3. Reproductive Rights Taken Away: This was mentioned in a repugnant book by a Judith Newman (I refuse to plug her here), but I have seen numerous blog posts as well, mostly written by mothers who think their children will never be capable of raising a child. They may not entirely be wrong in all cases, but they should be given ample time to determine it. Yet, I keep seeing this discussion of wanting the right to force vasectomies and hysterectomies on Autistic children. The youngest I’ve seen was eight. They don’t even know what he or she will be like at 18 or 26 or 32 and yet they are ready to make life-changing procreation choices for them? Is this out of concern for care or is this out of fear of more Autistic people in the world?
  4. Growth into Adulthood Denied: In the same vein, removing the sexual organs before puberty would keep the child from growing further. At least one mother argued that keeping her child small will make them easier to care for as she grew old. Humans aren’t dollies to carry around. Disability doesn’t grant you the ability to alter someone in this way. What does this also say the mother? Our healthcare system?
  5. Children Taken: I know of one woman whose children were taken from her once she was diagnosed, although I admittedly don’t know the whole story.
  6. Disability Discrimination: “But, you don’t look Autistic.” “Autistics can’t [insert random life action here]. My friend’s cousin is Autistic, so I know.” “You can’t be Autistic; your eye contact is too good.” “You’re not Autistic, you’re just lazy.” “Retard!” “Weirdo! Freak!” We are constantly insulted or back-handed completed for masking well. We are called names for not fitting in. We can’t get the help we need without an embarrassingly patronizing display from healthcare professionals, and so on.
  7. Work Discrimination: The right to better ourselves is often denied us by hostile work environments that becoming more and more homogenized. Accommodations are woefully lacking and often insufficient. People gossip, manipulate, and back-stab normally, but they were worse towards those with invisible disabilities that they can make use or fun of. It’s exhausting. Trying to “pass” as normal doubles the damage, and further leaves us with severe self-esteem issues.
  8. Diagnosis Male-Oriented and therefore Male-Biased: Female diagnostic criteria for ASD is still not in the DSM. Still.

I’m not seeing any of these values in the treatment of those of us with hidden disabilities, with extra emphasis on ASD because of our social deficits. This is rather eye opening.

Broadly. Talks Working Autistic Women

There’s a rather oddly written article on Broadly. about Aspie women and the workplace. No, I'm kidding.I say oddly for lack of coherent order or argument flow. It appears the intention is to talk of symptoms we women face, but it really is not tied back to one central point because it switches gears between symptoms and an employment organization. That said, I get where she was going: advertisement of the org via article. Got it.

Anywho… The symptoms mentioned are a good place for me to start talk about what I’ve been experiencing because of my workplace. I’ve been working for the government for three years. It’s absolute torture, and I’ve been in and out HR more times than I can count now. If it wasn’t for union protection I would have been fired just for not being the meek, avoidance type. Thankfully I’m not though because they eat people alive.

Because of this I know a lot about Aspie Burnout. I’ve had burnout 3 or 4 times since I started this same job. I’ve been on two medical leaves, both for physical problems, and emotional as well. I’ve had enough of the bullying and mocking, especially when they know full well my diagnosis. EEOC is coming, all I’m gonna say.

Right now I’m in a whole new zone, somewhere beyond burnout, where my vindictive and conniver aka my bitch side comes out. I didn’t want this side to resurface this way, but I am so done with this place I’d nuke it just as a warning to others.
(Because of the world we live in today, no, I would not actually hurt people. Please put the gun down officer.)
I kind of miss the days when I was completely naive to the fact that I even needed to guard my words. I had far more energy. It’s not like I’m even any good at pretending to be normal anyway, no matter how much people tell me I’m “so normal”. Actually, they really want to say, “You’re not different, you’re just an a$$hole,” which is so much easier for them to wrap their teeny, tiny brains around than to try understand what I really go through.

In the newer understanding of female specific “symptoms” there is something called twofaced“masking”.  If you happen to not be familiar, it as studying another girl’s behavior to then mimic her as a way to try to fit in with other girls. Some (or many?) Aspie girls learn to do this to cope. It also costs far more energy than it would for a neurotypical to develop the same skills without a mask.

I never learned this mimicry, which has always been a double-edged sword. I’ve always felt super strongly that we are ethically bound to be open and honest. And now, in my late thirties & early forties, I’ve been fire forged to lose a bit of my naïveté, but gain the patience necessary to find out what people’s motives are, and they aren’t very good I’m finding. It is rather disappointing.

I have also believed in letting one’s freak flag fly, and this is not the exactly the standard business behavior. I have paid over and over for just being myself and hoping people will be accepting, but I am repeatedly disappointed there too. It does hurt the self esteem after a while, and it reinforces the idea either way that who you are is unworthy and people only want to be around mirrors of themselves. This is particularly true in my current office. Trump clones.

I don’t personally have issues with work clothing with the ever present exception of tags! and finding comfortable footwear. I don’t do cute shoes or anything girly really. But, I do struggle to find shoes that will accommodate the shape of my foot.

I wish my parents had encouraged my interests. Instead they’d say every single one as a waste of money. Toys for me were ever a waste of money. My parents let television raise me because it didn’t cost anything extra for them. My mother made a huge show of how wonderfully giving they were just to buy me new clothing at the beginning of the year and that became an excuse to not buy me Xmas or birthday presents. And, they weren’t even poor yet!!  My mother went to Ann Taylor. They went of trips to the Caribbean. And so on.

So, that covers the symptoms they covered in the article. I’ll need to separately add more of my own.

15 Seconds: My Diagnosis Story

It’s a lot to take in at once. ASD Level 1 was handed to me before I even knew what it
Aspie behaviorseven meant. My voc rehab counselor suggested that I figure out if something else was going on besides just anxiety (after work-related error in judgment). Since she mentioned Aspergers specifically I sought out a specialist in the field. I fully expected to be told that this was me barking up the wrong coconut tree because I knew nothing about autism. Rainman, Baron-Cohen tests, and part of the “Pretending to be Normal” book seemed completely foreign and didn’t speak to me at all. All I had out of the pic on the left is “Difficulty in interactions with others”. Not much of match, right? I totally get why anyone would be reluctant to bother seeking a diagnosis.

I was already forty at this point. I’d been introspective my whole life. How could I not know this about myself? I knew everything… I had taken every test. I had read so many books, from Astrology to what Jungian archetypes fit me. I never had developmental delays according to my parents. I’m “normal”, just weird, right?

Nope. She said she knew in 15 seconds. *facepalm*

I googled the PsychologyToday for a local psychologist that would be PhD and a specialist in this field. This one, “Mary”*, said she was caring and kind, and that’s another story, but I bought it. I made the appointment. I sat down in the room, and I threw my life down on the floor before her.

I talked about my divorce, my education, my difficulties at work, my layoffs/firings, my parents, the years being stuck, and on and on. I talked about my upcoming trip to England, and how I love learning about cultures. I shared my “special interests” in politics, logic, history, and mythology. It all came out in one epic infosplatter.

Then I said, resolutely, that I wanted to know if maybe I was Autistic and the reason why. To my surprise, the answer was, “Yes.” And that’s when she said she knew “in 15 seconds”. That was her actual words. She told me I’d have to go through some testing to be sure, but it appeared she was already decided.

My head spun. I was almost angry. How many people would say they know your most inner self in 15 seconds? A gypsy fortune teller at some weird carnival in a horror film? The next week I was in a stupor. I started to google more about what this meant, and still I was lost on how this could be me. I wasn’t googling women and female in my searches yet because I just didn’t know there would be a difference.

The next two visits spanned my assessment. She wanted answers to specific traits common to our neurotype, although looking back, it was still male gendered or neutral traits, not what is common to women. Still, I fit.

Suddenly, a sigh of relief washed over me. I wasn’t alone anymore. There are lots of people out there that are my people, my clan. I started joining Facebook groups, and reading what I shared with others. It was transformative. We had some many joys and defeats in common.

The next session with “Mary” was not great. Once the relief washed away, the next emotion was grief. I started to mourn not knowing sooner and the choices I could have made differently. Instead of empathy, “Mary” was already past that and onto wanting to “fix” me. I was just trying to recenter myself after a gigantic, life altering revelation, and she’s over it. This is where some sympathy would have been appreciated, but she was busy trying to “help” me with my work issues by trying to work on my social skills.

Does anyone not see how that was invalidating my feelings?

Anyway, my time with “Mary” was short-lived. I gave her a few more sessions, even expressing my need to get used to the whole thing, to see if she would focus on just listening to my problems till I was ready to take on more. It didn’t happen. I got a blank stare then more urging toward skills and things I was not ready for. I took the next few months to reflect and debate whether this whole therapy thing was truly worth the bother.

*I’m going to be using the fake names in quotes in the future. I suppose at some point I’ll make a glossary.