Wednesday, October 12, 2016

Guest Post From Erin: When Do We Get To Be Autistic?

POST EDIT: I also read the post in the links Erin had and THIS (CLICK) one was so on target too, I could have written it.
The following is a guest post from Erin at this blog: (CLICK) I have always loved Erin's posts and look forward to the insights in her writing. This post resonated with me because no matter how much I advocate, find great support, or accept myself in all my differences, I still often find that I am censored for who I am simply because of the world we live in. I do not think most would guess it from my posts or emails, that most blogs I debate over posting at all. I often feel tempted to whisper my stories, truths or being. Even on forums, I find myself heavily editing. It's who I am partially and partially whom I have to be. 
If I don't have a voice and allow myself one, how will my children get theirs? How will our world hear diverse ways of being? My blog space hits people usually one of two ways- they write me telling me what they hate, how I am judgmental or any numerous ignorant comments that are listed below and how I should be on a private space...or how I have touched their lives for the better, how I made someone feel less alone, how I soothed, encouraged and inspired...and how I am a voice worth BEING. I have learned to take both with a grain of salt, but the difference isn't that my writing is so crazily different on each page but that the audience member is very different in how they perceive who I am. 

I learned some lessons the hard way that I feel are unfair lessons to learn in the first place. Some were well intentioned and others were mockery guised as "helping me." I was told, multiple emailing a few days in a row, even if it is genuine and just how I communicate "was wrong" or "too much" or "inconvenient for people." I was told my emails, texts or time spent talking were "too long" and that length meant that I was aggressive, upset, trying to defend myself or taken as harm intending. This baffled me. I was just being me. I am long winded because my brain needs to discuss all thoughts. To me they are woven together but when I put them down, I need more time to get to my point. Plus, writing is the only place where it is clearer and where I can communicate the most effectively so of course it will be longer if I have to stay silent elsewhere. I have learned how to shorten this in general but it's painful to do so. My thoughts were- if people don't have time- simply delete and skip. If they love me they will just smile and save it for later, skim it or ask me if it was important to read. If they don't love me they can block me. I thought it was pretty straightforward as that is what I would do.  Turns out most people prefer to mock, make me pay with petty comments at dinners for my differences, joke with little digs, call me on it, tell me what the "appropriate behaviour" is, fix me, ask me to change or take offence.  I had to learn the hard way how to communicate "appropriately" though most rules still seem silly to me and inconvenient but I try to follow them as best I can to cause the least harm. It seems unfair that a simple difference can cause so much uproar and indignant outcries from others...and that if I write about it- I am apparently revelling in bitterness. The difference between a normal perception and mine...Just because I write about it to bring it to light- does not mean I am feeling anything about it at all other than genuine bafflement or injustice.

I have also heard numerous times that being autistic is easier than any other difference to find support. That apparently the Autistics get all the aid, the support and the time. Nothing could be further from the truth. Only one professional actually knew as much as me on MY OWN CONDITION. Which is very frustrating when you are seeking counsel. On the government websites and  previous others who received funding, I learned that the funding often ironically is most often approved based on our co conditions like Dyspraxia/ DCD / severe Anxiety and ADD ironically. I have had to fight to be heard and I have to normalize to be respected. 

I have to seem capable to get the results out of the world, but seem incapable to get funding. An irony that my children also face. I have heard it's because I am "high functioning"  (a concept that I don't believe in -SEE WHY HERE) that I don't need aid. I have been hushed, censored, mocked and strongly disliked because of my autistic brain. I get that not everyone will like me. I am not a person who can have a numerous amount of friends and stay happy and sane, due to being an INFJ, so that does not bother me. What DOES bother me is being disliked simply because of my differences in communication. It's not right and those kind of mentalities will also bleed into the world, my children, and the future.
My favourite paragraph from Erin was her third from the bottom of this article. I fluctuate between feeling somewhat safe on my own forums and being a confident, vulnerable voice to feeling completely unsafe outside of my home or even on my own blog/spaces ( even with people I generally trust.) Sometimes, after I hit publish, my stomach crinkles up and I have a tough time sleeping. Always, I edit the piece at least ten times within the hours after because my words are so often taken the wrong way. It's sadly, just part of being autistic in the world we live in. I am glad that at home, I can be Autistic fully, as it is the only place that this actually can happen. I am glad my children and husband accept me as me. It's wonderful. Even then, I can say some things that sound as not what they are intended to and accidentally hurt, but the difference is, that my little family GET that it's who I am, realize after their hurt that my communication style is different and allow me to be Autistic. I wish that could be true elsewhere...

Erin puts this concept into better words. Enjoy her insights- The following are ALL her words, guested with permission. See more at her space in link above:
Image is a yellow/blue watercolored background with the text: I have been congratulated for “overcoming autism” : a well meaning gesture that means nothing at all. For a time I thought this was applause for having the ability to pass, but I have learned that it’s code for “we expect you to act normal now and anything that you can’t do we will consider a personal failing.” –
I’m seeing a new therapist and I’ve told her how much I like to write; last week I told her that I haven’t blogged in a while because I haven’t had the time, but this morning I told her that I’ve realized I am not writing because I don’t know what to say.
She told me that it’s important to keep doing this so that I have a voice.
So I’m going to try to say some things.
I have a friend who is autistic and also a kind of mentor to me, someone who’s been around for longer and I look up to her because I admire her sense of fairness and the way she applies a gentle touch to fighting for social justice. And also because she has this way of leaving me with these jewels of words that I keep forever – and she probably doesn’t realize she does this, but perhaps she will recognize herself when she reads this – like when I fretted that my inability to express convincing enthusiasm would put her off and she told me, “you don’t have to do the face with me.”
And when we were talking about another autistic person who was under fire for the way they talked to other activists and she said that she was sad because she knew this person was kind and thoughtful and was being misunderstood because of their communication style, which made her wonder, “when do they get to be autistic?”
This is a post that is not about me, or it’s partly about me, but it’s also about all of us. We’re pattern seekers, you see – we Autistics. Or maybe “pattern receivers” is a better phrase, as so often the patterns just seem to be there, revealing themselves to us. The pattern that lately reveals itself to me everywhere I turn is that it’s still not acceptable, sometimes not safe, to be Autistic in this world, no matter how much lip service is paid to awareness or acceptance.
This is about me, and it’s about all of my friends.
It’s about my friend A whom I won’t name without permission but who has spent hours with me dissecting what is really going on in our conflicts with non autistic people and how to balance self care with bridge building and… well. Without A I don’t know what I would have done these past few months, really.
It’s about the people at the Autism Women’s Network meetups who express how much they long to show the world what they can do, what they have to offer, what they’re good at, but struggle to attain even the most basic supports, not because those supports are impossible for others to provide, but because the people in neurotypical environments think that we should be able to just suck it up and deal with: painful lighting, overwhelming noise, fast transitions, sudden schedule changes, our inability to communicate verbally under stress.
The awkward thing about being an autistic adult who communicates in words is that we are expected to have “overcome our autism” when we have no such goal even if it were possible (spoiler alert: it’s not). I have personally been congratulated for overcoming autism: a well meaning gesture that means nothing at all. For a time I thought this was a kind of applause for having the ability to pass, but I have learned that it’s code for “we expect you to act normal now and anything that you can’t do we will consider a personal failing.” For adults who were not diagnosed until adulthood or are not diagnosed but have self identified, this goes double.
We still ping as different, as other, as unacceptable; but everything that pings as non-typical about us is attributed to a cause that is NOT autism – it’s just a character flaw or something we are doing wrong.
– if you have social anxiety, actually you are just
—> rude, unfriendly, antisocial, self-isolating, a misanthrope, a snob
– if you have a direct communication style, actually you are just
—> rude, confrontational, aggressive, insensitive, argumentative
– if you are drawn to deep connections in conversation, actually you are just
—> too serious, too intense, a downer, socially awkward
– if you have sensory aversions, actually you are just
—> fussy, entitled, irritable, negative
– if you have executive functioning challenges, actually you are just
—> lazy, disorganized, incompetent, a complainer… or not that smart.
So the people who “just don’t see it” when you say you’re autistic or who think it’s so great that you’ve “overcome” the way your entire mind and body are designed simply because you can say words with your mouth or type words with your fingers (sometimes), definitely see that you are not like them. They’ll tell you so all the time, in their own way.
I worry that because I fumble to express myself in a room with people but manage to find my words when I’m alone with my fingers on the keys, I will be seen as
—> disingenuous, passive aggressive, two faced, or just plain
Crazy, like those old coworkers once called me when they found my blog…
I’ve had a pervasive feeling of not being safe lately that’s been impossible to shake. I don’t mean that I have felt myself to be in physical or mortal danger, but my soul, my true self, is afraid to come out. I’m aware of being too much, too intense, too serious, too too… . I worry that owning the word disabled will cause people to see me as incompetent. I feel that asking for more help or support will cause others to think that I can’t do it at all. I can’t stop pushing myself to prove my worth through my hard work. I will wear myself out trying to earn a place in the world.
I look on others who come out to the world with powerful vulnerability, who find their strength in softness, with keen envy. I feel miles away from that. Light years away.
I don’t feel brave enough to speak. But someone told me that I should keep writing because I need to have a voice. If this is my voice, I have some things I’d like to whisper.


Ashe said...

Heh, I also have often worried that my longer posts come across as having emotions that aren't there. No, I'm not angry or hurt. I just never shut up! Most of the time I try to keep quiet, but once I get a wee bit relaxed, you can't get a word in edgewise. So I for one do not judge you for long posts. More like "Chatterboxes, unite! :D" And perhaps I'm overly thorough because often when I do research I find a subject frustratingly sparse, so there is an internal need to make sure something out there is properly discussed. But, sadly, most people are supporting that "TL;DR (too long, didn't read)" tag, which makes it even harder for curious or talkative people to get out all their musings without any sideways glances. Bleh. Oh well. Pretty much anything you do will have somebody looking down their nose at you for it. It may not be polite to point out the obvious, but, nobody is forcing them to browse the internet, so they really can just go somewhere else. I'm not shy about posting that notice on my own places either. :P

Kmarie A. said...

lol...yes we simply need more time and I often wish things were longer or more thorough too! I hate that tag. I find it rude. We don't do it when things are short. What I find funny is...well, I will use an example. Every four to five months I send out a family video made to songs of updated pics and video clips. Usually around 5 minutes long. My theory is that the people who want to catch up and care will take the time. What I don't get is that I am not on Facebook...they spend more time wasting on people they don't care about looking at THEIR pictures for more than five minutes in probably a weeks time. I am asking for five minutes to catch them up every few months. I just find the whole time thing hypocritical in general and slightly ignorant-people don't think of all the things they waste their time on so sure if my space is wasting your time- then move on but don't complain as there are plenty of other stupid things you do willingly to waste your own time- I am just putting things out there but not forcing anything so keep your opinions of time to yourself...H aha yup that is what I want to say to them . Can you tell it gets me riled up?::)
Thanks for leaving your thoughts!

Ashe said...

No complaints here. I make similar gripes on a regular basis. Back when I was on Myspace, there was a dude I knew in person who seemed to think my profile belonged to him and he could tell me what I could and could not post on it. So I started intentionally posting things that would make him angry. I shall do what I wish with my territory and if another cannot return the favor I show them by politely disagreeing or shushing altogether then I reserve the right to be a right rear-end about it.

Sorta speaking of which, I see you have new pictures up on the sidebar since I last made a scroll down. (Or my memory is even worse than I remember.) They're very lovely. Kids really do grow up too fast when you're the parent! :)