Friday, April 6, 2012

Thinking Person's Guide to Autism-Autism Acceptance Month posts

The Thinking Person's Guide to Autism (TPGA) will be featuring posts from many Autistic individuals during the month of April. The main site is here:

The list, so far, is this: (Aaron and Autism Acceptance Month)

Wednesday, April 4, 2012

"The Problem with Autism Acceptance:" A Response

I posted this response to a blog entry about "the problem with acceptance."

Acceptance goes way beyond whether someone has "manners" or not. Non-autistics certainly are lacking in so-called manners, in their own ways. Autistic “lack of manners” is no reason to throw away the entire concept of acceptance.  To focus on manners or rude behavior is to narrow the focus too much. The lack of acceptance that Autism Acceptance Day and Month, and other acceptance initiatives, tries to correct, is the lack of acceptance of Autistic people and autism in general, including trying to “normalize” us, “cure” us, make us into “typical” people neurologically. Media and fundraising organizations that demonize us, speak of us only in terms of “disorder,” are doing a great disservice to children and adults who are Autistic.

Autism is not limited or defined by “Autistic bad behavior” any more than it is limited or defined by Autistic “good” or socially acceptable to the non-Autistic majority, behavior. What acceptance does is teach others, including my child (who is sometimes rude and also sometimes more compassionate than most adults), to embrace and cherish differences. This by no means precludes learning some commonly-held etiquette, if possible. (Some Autistic people will not be able to learn all the current versions of manners, but are still to be valued as human beings.) Temple Grandin’s oft-quoted “I was raised in the 50s and 60s when manners were drilled into us” is very simplistic. I was born in 1959 and was raised in the 60s. Whether or not manners (the manners that were popular then) were drilled into us begs the question. Many of us did not learn the “manners,” and some of us could not comprehend them, and then there's always the age-old phenomenon of kids and teens and young adults of all neurologies testing the "manners" their parents wish they had. Grandin’s comment often seems to be an indictment of today’s parenting and today’s parents. Distance breeds nostalgia. I know my friends and I, all of whose parents “drilled” manners into us, were hardly the well-behaved little angels that Grandin’s comment implies. We were kids. We were learning, each at their own pace, each with whatever challenges our disabilities, or our non-disabilities, presented. That quote sounds like the all-too-familiar “He needs some discipline!” comment by unknowledgeable people when they see an Autistic kid being overloaded by a sensory trigger. As a parent, an Autistic parent, I will always want acceptance for my child, even as he is learning how to navigate the world. I want this for all children, and for adults on the spectrum. This longing, and demand for, acceptance does not mean that people have to “put up with” behaviors that are harmful to them. It does mean that non-harmful characteristics, such as stimming, or non-typical ways of learning, should be supported so that the person can grow up to be the best possible Autistic person, ultimately on their own terms. Non-harmful behavior that is merely inconvenient or not typical in aspect, that’s what acceptance suggests that people take a look at, to see if they can grow a bit and make some room in their own lives for something that does not fit their preconceived notions of “normal.”  Hand-flapping (without someone trying to coerce us out of it), needing to wear headphones without being teased, attempts to communicate even if one person’s style seems “rude” because they have difficulties with social interactions, all these make up true acceptance for all people.

An earlier post, on "the problem with awareness:" I agree that there is a continuum from awareness to understanding to acceptance. One need not dwell forever at the "awareness" phase, but actively seek out understanding. Then, one needs to move on to acceptance.

Monday, April 2, 2012

Autism Acceptance Day Photos!

Link to photos by Jeremy S. 

I Do Not Think It Means What You Think It Means- Nick Walker

In a recent online discussion, a parent wrote, "It's fine to hate autism and still want acceptance." 

Yeah, but then it's not "autism acceptance," it's "neurotypical parent acceptance." 

If it doesn't involve acceptance of autism, and acceptance of autistic people as autistic people, you don't get to call it "autism acceptance."

Stimming in Public: Baltimore-DC March 2012

When stimming in public is fully accepted, it will be easier to be Autistic in this world. by nicocoer

The Hard Things- Cracked Mirror in Shalott

Often, but especially this month, there tends to be a false equivalency that gets promoted- that Neurodiversity advocates ignore the hard things, or that we don’t experience the hard things. From there, self-advocates are told that we can’t speak to the lives of other, usually younger, Autistics.  Obviously this is false. The hard things are a part of our lives, are a core part of them.
On the 18th of March, I had to go to Baltimore. To manage airports, I have a pretty set script that I follow in order to make sure that I make it through the airport and flights. Usually it works fairly well, and if I get confused I let a security person know I”m Autistic and it typically works out. The first time I went through security by myself, I had a TSA agent walk me through the security point step by step. (I have a soft spot for Pittsburgh, PA’s TSA agents as they’ve treated me fairly well. I can’t speak for anyone else’s experiences though.) I’ve had people let me be or give me appropriate instructions when I’ve lost words. Mostly I have decent experiences. Not as peaceful as trains, but decent.
Except this time I flew southwest, and their gate check process is different. Instead of picking your bag up at the gate, they put it through to the carousel in bag claim, and instead count it as a late bag check. A bit nerve wracking as I rarely if ever do a regular bag check. But this wasn’t the hard part. Nor was sitting on the floor next to the assigned baggage carousel for an hour. (I took video of myself rocking there, and it is edited in with other video on my youtube channel.) But by the time I got through what my bag looked like, I couldn’t verbalize words any longer. The words went away. Thankfully the BWI Southwest baggage customer service acted like it wasn’t unusual at all for someone to get out a netbook and start typing instead of talking. I also had to get help getting on the van- which was directly across the room- to the hotel.
That evening, I had to leave dinner because I couldn’t sit upright any more. My brain was completely done, and I poured coffee on the table because I could no longer judge where my cup was in space. The next morning, I couldn’t get out of bed because I had no clean clothes. The very thought of putting on dirty clothes Shut me down for hours. Thankfully, the thing I was at was Developmental Disability centered, so the organizers were understanding, ordered me lunch, managed dealin with the airline and hotel, and the person I was supposed to facilitate with took over my duties. (Thank you Nachama!)
And this is only a mildly hard “day.”
Even the tiny Hard things add up. Loud noises making me need to hide, camera flashes leaving me utterly disoriented, the wrong smells, colors, and textures- the little hard things could make me have issues where I would normally have none or even where I’d normally excel. I curl up in a ball in a grocery store because I don’t know the practical steps rather than economic difference between using credit and debit. I sit on floors in airports for hours because I can’t figure out the steps to get to my hotel. I get C-Diff or MRSA because I can’t remember when to clean. I pee myself because I hear the wrong noise and become scared. I can’t tell until the last moment that I need the restroom, and then I better get running before I forget or lose control.
A thousand tiny hard things.
I had to live off campus because I didn’t understand paperwork for housing and couldn’t figure out that I needed help. I had to drop out of school and became house bound for 6 months because I didn’t understand or know how to ask for help with school tuition or paperwork. I watched my carefully laid goals collapse, and can’t do anything beyond repress and hide when people I know graduate or talk about completing midterms. I lose my ability to conceptualize my goals after having plans go awry.
A thousand hard things.
Becoming homeless for a thousand tiny reasons. Being unable to navigate the housing system, and having to rely almost entirely on my Intensive Case Manager to even fill out the forms let alone deal with the people. Having difficulty with a form because I want to answer truthfully but have no idea how much people have spent buying me toilet paper- and then crying, pacing, yelling the same phrase repeatedly and staring at blank walls. Hiding in my 3 year old niece’s closet because I can’t calm myself, can’t process my environment further to get away from what is bothering me. Being trapped in town because I can’t speak that day and I need to find a way out.
Hard things.
Knowing something is wrong, large or small, and not having the words for it for 5 years. Being told I’m articulate when I can’t get my basic needs across to be met. Trying to report abuse, and not having the words to articulate it yet- then having my call dismissed because of my disabilities and inability to articulate it. Pressing myself into walls or running into them full stop because the pressure is soothing and I can’t get my world to stop- and then being treated poorly for daring to do so. Being put through unneeded procedures because my self soothing behaviors look scary to others, and echoing (oh echolalia!) their words back when they ask why I do them- Is it because of self hate, self loathing? Do you want to die?- because I don’t have the words yet to tell them how it really feels in my head.
Life is full of hard things.
But the hard things don’t make that life less worthy. It doesn’t make it okay to deny accessibility. It doesn’t mean you can’t adjust a little- and often to mutual benefit- to make the world more navigable to us.
The Hard Things don’t take the joy out of it. It doesn’t make the self soothing activities less self soothing. It doesn’t take the joy of observing the infinite diversity of our world within even human neurology- a joy that we can share, if we are willing, despite having infinitely diverse faiths or even having none at all. It doesn’t make my niece’s bringing me my stuffed cat less an act of love. That my former cat, ‘baka, was my service animal that I needed to help me self regulate doesn’t make my affection- nor even my grief at her passing- less deep.
The Hard Things, though, mean that you will look at them and say:
I don’t want that for my kid.
That is not safe.
That is too strange to do in public.
If you’d only “pull yourself up by your bootstraps” and get over it, the hard things wouldn’t be hard.
Your tears and meltdowns prove my point of your incompetence/that you will always be a child.
instead of finding a way to make the hard things livable. Instead of accepting that I need help today even if I didn’t yesterday. That I am an adult who is able to make my own choices- even when they are bad ones. That the reason it’s so strange is because of repression. That there are ways to make this all safe. That risk is a part of being human.
That there is joy in being one’s self.
Written for Autism Acceptance Day and Month. Many Thanks to Paula Durbin-Westby for originating Autism Acceptance Day and all the effort she has put into this event- please go check out some of the other posts she’s collected. Thanks also to Emily T for her sharp editorial eye.

International Autism Acceptance Year 2012-2013

International Autism Acceptance Year

The year 2012-2013 has just been declared International Autism Acceptance Year.

International Autism Acceptance Year will run from April 2, 2012- April 2, 2013, plus all of April 2013 will be good for even more Autism Acceptance events and activities.

Several reasons for declaring an International Year of something in almost the middle of the year:

1. I just now had the idea.

2. Declaring it now will leave International Autism Acceptance Year where it belongs- in the Autistic community and the community of our supporters.
3. People I know, including Autistic friends, parents of children on the spectrum, are still being exposed to a barrage of "devastating disorder" rhetoric. Our work has just begun.

More info coming soon.

Paula C. Durbin-Westby, Founder, International Autism Acceptance Year

This Is What True Autism Awareness Looks Like-Shain Neumeier


If you are going to recognize April as Autism Awareness Month, then please, by all means, make yourself aware of the following:

Be aware that Autistic people are too frequently subjected to the idea that we are inherently incompetent, the idea that we are simply not trying hard enough to pass as non-Autistic, or both at the same time, and that each can do just as much damage.

Be aware that far too much effort is spent on making Autistic people try to be as non-Autistic as possible, regardless of our comfort level, rather than teaching us how to be functional and happy as ourselves.

Be aware that Autistic people are bullied, harassed and excluded by our peers on a regular basis, and all the while it is us being told that we have poor social skills.

Be aware that Autistic people in schools and institutions are restrained, secluded, overmedicated and tortured in the name of treatment or discipline, and that the law as it stands is inadequate to protect us from this.

Be aware that many Autistic people are abused and even killed by their families and caretakers, and that the public excuses these actions far too easily by portraying us as too difficult to deal with in any other way.

Be aware that, still, Autistic people are segregated from non-disabled society in institutional settings and sheltered workshops, even while cheaper, more effective options that respect our human rights and dignity exist.

Be aware that, despite the many assets that an Autistic mind has to offer, many of us are under- or unemployed because employers, and educators before them, have been fixated on our deficits and not our strengths.

Be aware that many – too many! – of the organizations that claim to represent the interests of Autistic people don’t truly represent us, but instead represent the views of people who want a world without us in it.

Be aware that Autistic people’s voices are consistently dismissed in the discussions about what should be done about and to us, with those of us deemed “high-functioning” told they aren’t Autistic enough to know what people like them need as a whole, and those of us deemed “low-functioning” treated like they are too Autistic to know what’s for their own good.

Be aware that every Autistic person, no matter how severe their autism may be, is a human being who deserves dignity and respect.

Be aware that we can hear you when you say we stole your real children, when you say that we are empty shells, when you say that we are burdens, when you say that we are better off dead, and it hurts us to hear as much as it would hurt anyone else.

Be aware that the scaremongering that says that Autistic people are hopeless, that our lives are depressing, that we can’t hope to lead productive and happy lives as we are is just that, and doesn’t have to be true.

And lastly, be aware that you can be part of making life better for Autistic people by working with us to change the world into one that accepts and values us.

Autism Acceptance Day- New Blog Articles

Here are links to new blog articles for Autism Acceptance Day, April 2, 2012. I will add to the list as they come in. More will be appearing throughout the day! Hang in there, everyone- write, or make videos, or slide shows, or whatever you can do on the ground to show that Autism acceptance is what we want, and what we intend to have. NOTE: I am changing how I am crediting the authors in both this ongoing post and in the links list on the side. I am planning to put authors names or avatars in parens, but I wont get to all of it right away. Too much going on! ANOTHER NOTE: The articles found on the Autistic Self Advocacy Network blog and at Thinking Person's Guide to Autism are located in other blog posts on this site in order to keep a reasonable number of links in each post. (Generations: What Acceptance Means to Me!) (Zoey Roberts CNN video clip) (Stigma and the Othering of Autism- Lynne Soraya) (Paula's local newspaper!) (Cynthia J. Patton) (Autism Acceptance Month mentioned on Sean Hannity) (Kassiane S.) (CJ Shiloh) (Living by Starlight) (Outside In) (Ariane Zurcher) (International Coalition for Autism and All Abilities) (Shannon Des Roches Rosa) (Amy Sequenzia) (Into the Woods: Jennyalice) (Amy Sequenzia)
(Caryn Sullivan)  (Diane Isaacs) (Kerima Cevik) (Autism Positivity Day! April 30)