Pushing Limits Interview

Today I was interviewed on KPFA (94.1), for the program Pushing Limits, which centers around disability issues, about autistic rights and aspies for freedom.

The program can be listened to at:

www.kpfa.org/archives/index.php?arch=27634

The questions were given to me prior to the interview, as well as displayed on a thread at AFF, and these were my answers I wrote out ahead of time, so that I would have a reference of what I wanted to say. The interview covered some other stuff that I didn't have written out, and I didn't get to all of these points on the program (though I had a lot of time and got to the crucial stuff), so here are my prep notes:

What is autism?
Autism is a neurodevelopmental condition that generally affects speech and language, socialization, and sensory processing. Autistics vary greatly in how this manifests, as some people are completely non-verbal, while others have little to no difficulty with speech and language, but most of us are somewhere in between, and that goes for a lot of traits.

What does neurodiversity mean?

Basically, that neurological configurations that differ from the norm, such as autism, are not inherently inferior to more typical configurations, and trying to make the neurodivergent conform to typical ways of doing things, often creates more problems than it solves.

Why did you join this AFF site?


I joined AFF, for a couple of reasons. One is the community - when I'm facing discrimination, or trying to figure out how to navigate an airport, there's a lot of support, from a lot of people with diverse knowledge and experiences. The main thing is the activism - it's easy enough to say, yes, I'm autistic and proud, there are better ways to improve autistic people's lives than by funding research to make sure no more of us are born - but as it is today, not many people are hearing our voices. That is changing for the better - it's better than 5, even 2 years ago, thanks largely to the work of autistic self-advocates, but we still need to make a lot of progress.

Do you know of the wider disability rights movement?

In my research of autism and autistic advocacy, I started to realize not only how much autistic rights are tied into things like gay rights, but also to disability rights. Some believe that all autistics are disabled or that none of us are, but from what I've seen it varies from person to person, especially when looking at our situation through the lens of the social model of disability.

Even autistics who don't consider themselves disabled, and are capable of employment, even if they have degrees, a lot of times won't be hired because of unusual eye contact or body language, things that have nothing to do with their job responsibilities. Others don't attend out-of-work social events, and are seen as not being a "team player", even if the reason is that they don't see obligation to the events and that they would stress them out too much.

Where would you like Autism Rights to go?

I would like there to be better information and supports to the families of the newly diagnosed, and for there to be less stigma. We should get to a point where it's not considered an undue burden to write out instructions instead of saying them, for instance, or to provide autistics access to communication, whether by using pictures, signing, typing, speech, or any combination of methods. When a parent gets told their child is autistic, and that parent sighs in relief because now they know their child will have access to a good education and services and opportunities and choices for their future, then I might say we've reached our goals.

Also I'd like to see the Judge Rotenberg Center shut down, for their use of electric shocks and other harsh aversives on autistic and otherwise disabled people who are kept there. They have withheld food from people for not getting the right answers on a computer, and administer the shocks in such a way, that the person receiving it has no way of even knowing where on their body the shock will occur. There are many complaints about the treatment of people held at Guantanamo Bay, but when acting in these ways on disabled people in the name of "treatment", then it's allowed to go on for decades.

I would also like more of a venue for autistic people to voice our opinions and advocate for ourselves. There is too much of a trend in having non-disabled people "speak for" people with disabilities, and this even gets reflected in the names of organizations - for instance, the pro-institutionalization group called "Voice of the Retarded", or "Autism Speaks". The people leading these groups assume our voices, and in so doing assume our goals and intentions. I'd like to see more support going towards organizations like the Autistic Self-Advocacy Network, and Autism Network International, which are led primarily by autistics and allies. Autism Speaks does not speak for me.

Does this community here give you positives where the larger society can't meet those needs?

The larger society is certainly capable of meeting many of these needs, through greater understanding and acceptance, which runs deeper than garden variety awareness, though there is one need that I don't think the larger society will ever be able to meet, and through no fault of anyone - there is a certain...recognition, almost, a deeper kind of understanding that you find with someone who's wired a lot more like you than most people, and to be able to communicate with a whole bunch of such people, who aside from being autistic have a huge variety of experiences and interests, there's a certain connection that is hard to describe and impossible to substitute. But as for other things, like acceptance and removing roadblocks to education and independence, society in general is capable of meeting those needs, and I have seen individuals demonstrate this capability. It's just that we're not there yet.

Innocently Stereotypical

This is from a comment I wrote to an article located at:

THIS SITE

Hello. I am autistic and have done many of these things in this article. However, it's a mistake to claim that most of us are danger to self and others - while that certainly can be the case, and I have been self-injurious, it should be made clear that every autistic person's needs and abilities vary wildly, both between individuals, within themselves (such as good spatial but poor verbal skills), and across time (the gain and loss of skills of an individual over time). 

I do understand the difficulties parents can have, though I think it would be naive of anyone who is becoming a parent to think they're going to have much opportunity for a date until their children are grown. The few times my parents have gone on dates were when we visit our aunt and uncle so they stayed with us while they went on a date. My older (non-autistic) sister had a slew of problems with babysitters, including problems by her misbehaving and also problems of babysitters causing physical and mental harm to her. Even before that, though, my parents have said that before they ever had kids that they didn't expect to have much opportunity to go on dates. 

Also, while I quite understand the difficulties that non-autistic people can have with communicating with autistic people, particularly when unable to speak or type (whether for portions of the time or all or most of the time), I think it would be a mistake to perpetuate the idea that we are non-communicative. Many autistic people have had to learn how to "read" the body language of non-autistic people, and to communicate in ways that are really foreign to our minds (for many of us, communicating words is one of these ways). 

So while I don't fault people for not understanding us, I think it is dangerous to assume we are impossible to understand. Some of my best friends are not autistic, and when I can't speak, or aam having meltdowns, then they have developed the ability to read my body language and understand even when I can't speak, or even in those times when I am unable to type as well. 

These are mostly people who haven't worked with or been around other autistic people, but they haven't tried to understand me in the context of a label, but rather in the context of myself and the situation. 

Usually it's those who are specifically trained to deal with autistic people who have, in my experience been most prone to misunderstand me, and it is typically because they look at my behavior in lenses of deficits and dysfunction, rather than taking on a more global type analysis of the situation - such as by looking at trying to stop me from rocking or spinning, rather than looking at what the stims might mean, and what is going on in the environment. 

So while I don't expect people to suddenly be able to read autistic body language (it usually takes years and years - I mean, it takes many of us years and years to understand non-autistic body language and other nonverbal cues, to state that we are inherently incomprehensible discourages people from trying to communicate with or understand us, sometimes even when we can type or talk this happens. 

Also just feel like pointing out that for things like rocking, spinning, tapping, finger flicking, and other stims, there are many reasons for this - sometimes it's because of stress/anxiety, sometimes it's something we'll do as a neutral state, sometimes it's something we do when happy/excited, sometimes when sad, sometimes when angry, etc. It's more like an unusual expression of the usual emotions, though what has been written that it can be a soothing response to chaotic stimuli, is quite accurate, though in reality it is only a small part of the picture. 

Also, another thing to keep in mind is that the characterization of autism as especially and inherently mysterious is more of along the lines of the statment that we're impossible or nearly impossible to understand - it basically says we're mysterious because we're different and mysterious, rather than we're mysterious because we're different and society doesn't provide a good framework for understanding us more. 

Again, I don't fault non-autistic people for not understanding what goes on in an autistic person, but the image can morph into a damaging stereotype in reader's minds without ever this being the intention on either part, so while what goes on in individual people is of course highly individual, regardless of neurotype, it is somewhat disquieting the frequency with which autistic people particularly get characterized in this way, when people with other speech disorders and people with other disabilities that can make communication difficult, often are not characterized this way, whereas for describing autism in journalistic articles it seems almost standard. 

I think the main things that are important to address regarding autism are the difficulties of obtaining an appropriate (let alone good) education despite IDEA (there are so many legal hoops, and often poorer people such as myself find services impossible to obtain even up to age 18 where I am, mainly due to the functioning-label stereotypes. 

That's another good thing to address, the functioning labels. Usually characterized as high-functioning (HFA) or low-functioning (LFA), Aspergers or Autistic (though really it's all autism). I was diagnosed with the Asperger label at age 10 through the school, mainly because my parents couldn't remember a language delay, and because I could write well. Okay, so since it's all autism, shouldn't I be evaluated for services based on individual needs? That's what I think, but bureaucracy thinks different. 

Mainly why I was diagnosed so late is because not only are we poor (so couldn't even begin to think about seeking out a consultation or evaluation or anything), but also my dad is on the autistic spectrum as well, so when people noticed odd thngs about me, like how I wouldn't respond to my name and would rock and line things up etc. ad nauseum, he'd reply he was "exactly the same way" at my age, and though i have apparently noticed I started speaking late (after doing Internet research indicating a movie relase date - too long a story to get into how that's relevant), it wasn't a concern, as my parents don't believe in there being a strict or ideal "shedule" of development (I don't either). 

However, when attempting years later at age 16, 17, 18, the difficulties I'd had with things like language and self-care all my life, to type these things to people who work in special services, they would nod and disregard me as just a "bright, but shy" Asperger teenager with little difficulty getting through life. Their stereotypes were far stronger than what I was actually learning to communicate these things in words. 

When one already has difficulty using words to explain complex processes and ideas, and they start initiating this communication, it is certainly no encouragement to have your words entirely disregarded on the basis of a label rather than on the basis of need, and they didn't start conducting further evaluations until the last three weeks of school before I graduated (which I nearly didn't, but somehow managed to bring my failing GPA up to 3.3). 

Because I had a "high-functioning Asperger" label based on my parents not remembering a significant language delay and because I could write well, they didn't take into account significant difficulty with things like initiating speech, auditory processing, sensory overload, self-care, multi-tasking, changing scheduled activities, learning and conducting multi-step tasks, asking for help, etc. and even refused to see these difficulties based on just things like stereotypes and budget. 

These I think are the most important types of awareness and journalism, in addition to positive yet realistic looks at how autistic people can be (such as, I wouldn't consider an article focusing exclusively on how some of us have savant abilities, and that this is the reason why autistic people are valuable as is). 

While some when I say without hint of shame or awkwardness that I am autistic, that I shouldn't "label myself" as if saying I am autistic is somehow an insult on myself, much as the word "gay" is often used as an insult, then I think - why is that not okay, when it's considered standard fare for this high-functioning/low-functioning dichotomy to be applied to me without my consent? When they say I'm low-functioning, they're wrong. When they say I'm high-functioning, they're wrong then too. My functioning depends on many things, including environment, accommodations, opportunities, the particular skill that my functioning is said to be based on, and also how I am treated and portrayed by others. 

While this may seem a tangent, it is incredibly important for the observer to be aware of how others might characterize them, and how a reader might unconsciously make decisions about what sort of person the observer is based on pre-conceived notions that they may not even be aware of. As someone of a group whose voices are often dismissed easily by such haphazardly applied pre-conceptions, it is virtually unavoidable for me to participate in such discourse and NOT be aware of them. 

For an excellent look at autism from the perspective of a significantly disabled autistic person as well as how the society perceives us, I suggest you look up the blog ballastexistenz. It's that blog, among some others, that have helped me to be able to describe my perceptions and experiences, some of which have been related here, using the words of the language. It is a useful resource indeed, and she is very good at explaining things she writes.

Happy Autistic Pride Day!

I started the party last night, and stayed up the whole night. Didn't really have much to do, so I took an online Raven's IQ test around 4:30 this morning.

It was fun, but I must've been so wired on my imaginary coffee, because I got through the first three quarters of the thing in five minutes. Got a 104 (not a high fever though). Not bad - though I still feel foolish for having zipped through it, thinking I was getting everything right. Ah, well. Good to put arrogance to bed, even if the rest of me failed to nod off.

Another way to celebrate: I figured out how to do a makeshift version of smores involving my microwave. I learned from the last time my lesson about plastic in the microwave, and the WRONG way to melt chocolate, so I did some research, and heated up some water, then put the chocolate I wanted melted in a measuring cup and let the heat energy transfer from the hot water to the plastic to the chocolate.

It was a good experiment. One I'm sure any self-respecting hungry chemist would be glad to review. ;-)

Still working on a couple video projects so far. One is part of a thread on AFF, which will involve me talking about various experiences as an autistic person.

Another one is more of a self-contained, mini-documentary (mini both for time length and because of a limited selection of subjects). Also am working on the planning stages for another video project to submit to the possibility of being included in a...er, a London something, I can't remember, except that I'm excited to submit my contribution as soon as it's ready.

Gay marriage! Not htat it's new news, just, yeah, they talked about it more on the news because the licenses are getting issued. Ah. Gotta love California. I wonder sometimes what would be the social-political analogue of the legalization of same-sex marriage to autistic rights.

*shrugs*

Well, don't think it really matters. There wouldn't be an exact equivalent anyway, in terms of nature of it. Though I do sometimes worry about the threat of people who claim that autistics would make lesser parents, which particularly strikes a nerve with me as the daughter of a spectrum dad and me, with hopes to raise (a) child(ren) at some future time.

Watch this page for pics! I will edit them into my post as soon as I get them.

Oh! Boredom has it's better edges. Apparently I'm a chiuwuwa:

You Are a Chihuahua Puppy

Small, high strung, and loyal. You do best in the city with a adults - young kids could crush you!

What Breed of Puppy Are You?

Evidence of Smarm

The school year comes to a close, and on my last day of animation class I animated a short piece called "Evidence of Smarm" that is satirical of the Green the Vaccines thing, Jenny McCarthy, and more. I posted it on YouTube at http://www.youtube.com/watch?v=5fgw45gWew8

Tomorrow to celebrate graduation I get to go to Benihana. I have always wanted to go there, but we've never been able to afford it. So needless to say I am excited.

Also excited about grad night, though I hear that the buses will be crammed with three to a seat. Last time I sat in a bus that crowded was on the way to summer school about five years ago, and I had a meltdown. One of my friends suggested (half-jokingly, I assume) that she bring a dummy with her for me to have next to me.

I think I'll be fine, though, I'll bring a portable music device to listen to music. It's been rough getting up these last couple days, particularly as my parents' schedules have gone haywire in that they're constantly working these last few days. It's so they can afford to take graduation day off, but it's still difficult, and there has been much running late around here.

My mom's boss is extremely NOT understanding of these kinds of things (lately because of my parents' weird work schedules, I have a much harder time initiating movements for getting ready in the morning, having as much difficulty as I used to have about 8 years ago, and because my dad's work changes he hasn't been here in the morning to help prompt me to the things I need to do.

So, in the spirit of the day, I link back to my post earlier this year regarding the vaccines/autism thing. I don't write often about it (I couldn't really do as good a job as say, Kev Leitch or Joseph of Natural Variation), but sometimes I feel I need to put my words (or animated images with audio) out there.

Oh yeah! I published an essay in our school's award-winning literary magazine. It's about my experience being an autistic person in the system.