Posts by Elesia Ashkenazy
The Truth About Autistic Females
Published April 30, 2009 @ 04:00PM PT
[Ed. This is today's second guest post--I'll post about what I was up to instead of writing on Wednesday, promise!]
Greetings and salutations Change.org readers! When I asked Dora which of my previous posts received the most attention, she mentioned Blasting Stereotypes in Autistic Females, hence the inspiration for this post. Oh, and by the way, the girl with the gorgeous pointe shoes on (in the photo below) is me.
Okay, I lied. That girl in the photo below is not me. But it could have been me, right? That is if I were a dancer for Oregon Ballet Theater. Oh well, a lady can dream. My point--no pun intended--is that it is not beyond the realms of autism for an autistic female to have a special interest in something like ballet.
One of the autism advocacy groups I am involved with, here in Portland, has quite an array of autistic females with various interests. We have a ballet dancer (me), three artists who enjoy painting, a beadwork designer, a gymnast, a glam rock fan, and a Benny & Joon fanatic. That noted, we all have extremely individual appearances including tastes in clothing and hair styles, as well as unique mannerisms, nuances, and perspectives.
The males in our group are almost all heavily drawn to computers. Video games are also popular. One of our guys is a comic book collector and another one is a Buffy the Vampire Slayer (TV Series) enthusiast--much to Dora's and my delight!
In the name of education, I am going to expose some personal bits of myself:
Plugging In: Good Old Autie Fun
Published March 28, 2009 @ 10:00AM PT
Seeing as to how this is my last guest blog (for a spell) on Change.org, I thought long and hard about composing something groundbreaking, legendary, and full of maverick spirit.
Something that you could chew on while you're waiting in line for my book to hit the shelves. Something that you can scream from rooftops, or whisper into tender ears of those you love. Something that would give you hope during the trying moments of life. Something that would put a smile on a child. Something that would turn a jury of twelve, talk a man off a ledge, something to parrot as you accept that long-awaited Oscar.
But then I thought different. I hope you enjoy this stuff as much as I do...
So here are some interesting websites to visit:
Tests
- Youniverse - Be Understood: Click on this if you would like to take a visual personality test via pictures instead of words.
- The AQ Test: What's your Autism Quotient?
- NerdTests.com
- ASPIE-QUIZ
- the geek test v.3.1
- BrainBashers: Optical Illusions
- Internet IQ Tests
Other Stuff
- World's Greatest Hobby: Your guide to the world of model trains, plus you can search for a hobby shop, find a club, or look up a model railroad to visit.
- Lyrics.com: I can't get song lyrics down to save my life. Enjoy listening to Napster? Check those lyrics out.
- LiveJournal.com: Start a private, public, or friends-only online journal.
- Visit Oddizm, but only if you applaud Autistic community humor and views.
- Have a look-see at Institute for the Study of the Neurologically Typical, but again, only if you're okay with Autistic community humor and views.
Elesia's favorites
- FreeRice: Build your vocabulary while feeding the hungry.
- Online Dictionary and Thesaurus
- The Onion-America's Finest News Source: Do NOT click on this if you're easily offended. To get a feel for The Onion, check out Study: Autism Linked To Rainfall or Study Counters Autism - Vaccination Link *Again, please don't click on The Onion links if you're sensitive to autism satire. Last, but not least, check out 202 Chemicals Linked To ADHD, Autism
Best wishes to you all for a smooth weekend. Thanks for having me.
-Over and out
Interview with Jim Sinclair
Published March 27, 2009 @ 05:15PM PT
Jim Sinclair lives in Syracuse, New York. He is an autism rights activist, as well as one of the founders of Autism Network International.
Elesia: What issues are of utmost importance to the Autistic community at this time?
Jim: I can think of a bunch of them, but I would say they all basically come down to ignorance about what autism is:
There's more effort, funding, and research being directed at preventing the existence of future autistic people than at supporting and maximizing opportunity for autistic people who already exist.
Many of the "services" that do exist for autistic people are not as helpful as they could be, and often are even counterproductive, because they don't accommodate the way autistic brains work.
The misconception that any given autistic person has an across-the-board "functioning level" means that people considered "low functioning" are denied opportunities for access and self-determination because it's presumed that they're unable to benefit from those opportunities; while people considered "high functioning" are denied supports that would enable them to pursue opportunities, because it's presumed that they're able to function without needing those supports.
Elesia: How can others become involved?
Jim: You mean as allies? Become educated about autism--NOT by reading materials by non-autistic people about how terrible autism is, but by getting to know autistic people. And not just by reading books written by anyone at all, autistic or non-autistic. Meet us and spend time with us and relate to us as equals, not as beneficiaries of special help. Online forums run by autistic people, where most of the participants are autistic, are good places to "meet" autistic people in autistic space where we're allowed to be ourselves, instead of being expected to appear neurotypical.
Live autistic gatherings, such as Autreat, are even better if someone really wants to become involved. I remember I once told someone that I hoped he would come to Autreat, because I wanted him to be able to see me in an environment where I'm not handicapped. In the environment where he usually saw me, I was very handicapped. At Autreat, I'm just as autistic as I am everywhere else, but I'm not handicapped. If you get to see autistic people functioning in an autistic-friendly environment, you see a whole different picture than the typical tragic images of autism.
Speak up whenever and wherever you see anti-autism propaganda, puzzle logos, etc. Maybe carry around copies of leaflets like the one produced by the Autistic Advocacy Group, to hand out when the occasion arises. Write letters to newspapers, television and radio stations, and Internet news outlets critiquing their autism coverage. If you see that a local business is running an anti-autism campaign, take them to task for it, and urge them to do something to promote autism acceptance instead.
Write to your city school board, state and local legislators, and other officials demanding full access and adequate supports for autistic people to participate in education and community life.
Phil Schwarz has written some good stuff about allies. I think you can find at least one of his articles in the library at the Autism Information Library.
*Check Phil's article out by clicking here.
Elesia: What are some a) resources and b) etiquette tips that someone new to the Autistic community may find helpful?
Jim: a) Of course I'm going to recommend Autism Network International.
Also look at autistics.org: The REAL Voice of Autism, Autistic Self Advocacy Network, a whole lot of different blogs that you can access through The Autism Hub, The Autism Acceptance Project.... and a huge number of other resources that you can find if you start exploring those.
b) Be aware of sensory issues, and respect whatever unique sensory needs an autistic individual has. These vary a lot among people, so there are no etiquette rules that work for everyone--other than the #1 rule, which is NEVER ASSUME, ALWAYS ASK. The same thing goes for communication, especially nonverbal communication. Don't try to interpret facial expressions, body language, or tone of voice, because if you don't know this person very well, your interpretations are pretty much guaranteed to be wrong. Don't expect autistic people to be able to pick up on things you don't explicitly spell out for us. We have a whole set of guidelines for Autreat. Feel free to ask if you want to see them.
Etiquette snippets taken from the Autreat orientation guide, which are good to keep in mind around autistic people in any situation:
- Assistive Technology Many people use assistive technology (AT), such as wheelchairs and communication boards, in order to function. Please do not touch or climb on other people's AT devices without their permission. This applies to service animals too! Do not pet, call, talk to, make noises at, or attempt to feed or play with a service animal, unless the handler gives you permission.
- Flash Photography Flashes of light can hurt people. Before using a camera with a flash, you should get the permission of everyone in the area who will be affected by the flash, even if they will not be in the picture.
- Scents Many people are sensitive to scents. Please do not use scented products at Autreat. If you smoke in designated smoking areas, please be considerate about tobacco odors. If you use products that make it hard for other people to breathe, you may be asked to leave events.
- Sound Many people at Autreat have auditory sensitivities and can be hurt by noises that are loud, unexpected, or at a frequency that is painful to the hearer. Please try to avoid making unnecessary loud noise. You don¿t need to go around on tiptoe and whisper all the time. Just try not to shout, bang, stomp, slam, or play music or television at high volume. Activities that are meant to be loud, such as African drumming, will be held in places that can be easily avoided by people who need to avoid them.
- Touching Please do not touch other people without their permission! This includes "routine" (in NT society) touching such as tapping people on the shoulder to get their attention. Many people at Autreat find it startling or unpleasant to be touched. If you already know a particular person and you know that person is comfortable with certain kinds of touch, that is fine. But do not touch people unless you know it is okay with them.
Jim Sinclair's websites:
There is Eloquence in Darkness
Published March 27, 2009 @ 10:00AM PT
I recently received an email from a close autistic friend of mine. It was neither a plea for help nor a pity party, but more a cry for justice and understanding.
The email read:
I can't remember a time in my life when I wasn't overwhelmed. I can "work" (meaning being employed) but not be able to maintain relationships or self-care. Or I can maintain relationships but at the expense of working and self-care, or some other combo that is not all-three-things.
Social Security won't pay for me to live while I attend to the other stuff because I've worked in the past.
Social programs won't provide me with an assistant, only with "skill trainers," which doesn't actually help me.
So I'm stuck just attending to whatever the crisis of the moment is. I do that until I crash out and spend a few months catatonic. Then it starts again.
My meltdowns--or shutdowns--are an absence of feeling. They are a fight-or-flight response to a situation that simply cannot be coped with on any level.
One of the reasons why I'm so passionate about advocacy is because I don't want autistic people who come after me to live like I do.
My friend works himself to the bone. Envisioning my friend in a catatonic state is painful to me because not only is he dear to me, but I depend on him for support and guidance. Unfortunately, I cannot help my friend because his needs require service at a higher level than what I can provide. That noted, my friend neither needs pity nor does he wish to be cured. He simply needs greater public understanding, positive and empowering support, and meaningful legal change.
What upsets me most, is that my friend is just one of thousands of autistics dealing with the above issues in life. We wake up and perform tasks such as working, blogging, advocating, attending conferences, facilitating meetings, and forging contacts. Then we go to sleep--late--only to wake up and do it all over again.
The changes we have seen to fruition, in unison with current atrocities, provide our fuel. This is but a small first course in the larger feast ahead.
How does one respond to such an honest baring of the soul? Though my friend's world is at times dark and confusing, it lacks not of eloquence.
My response to my friend:
It seems there are no safe choices, only different ones. We all have challenges--autistic or not--and that's okay. It's okay because it has to be. I often remind myself that in every end, there is also a beginning.
Your orchestration of thunder is not conducted for nothing. There is an uneven distribution of power at play. I often feel as if I am constructing a house of cards, of which one wrong move will send the whole structure tumbling.
As Melissa Barton wrote, "What a war. Please send reinforcements."
A large percentage of autistic individuals are in need of appropriate education, acceptance and integration, opportunity, legal protection, housing, employment, and quality health care. We are thankful to those who join hands with us.
Autism: how one small word harbors such current.
I Know! Robots Can Teach Our Autistic Kids!
Published March 26, 2009 @ 04:10PM PT
Cup of robots anybody?
The Autonomous mobile Robot as a Remedial tool for Autistic children Project. The AuRoRA Project:
studies if and how robots can become a "toy" that might serve an educational or therapeutic role for children with autism. Our main aim is to engage children with autism in coordinated and synchronized interactions with the environment thus helping them to develop and increase their communication and social interaction skills. Important social skills that we aim to facilitate are turn-taking and imitation, in addition to general communication and interaction skills that are required in human-human contact. Humans are the best models for human social behaviour, but their social behaviour is very subtle, elaborate, and widely unpredictable. Many children with autism are however interested to play with mechanical toys or computers. Our project aims at children who have less developed communication and interaction skills.
The AuRoRA robots have been designed to teach autistic children social interaction skills, turn-taking, and imitation games. They also act as mediators and encourage interaction with humans.
In simple terms, what I am seeing here is interesting, but it boils down to a project that wants to help autistic children, but does not truly understand autism and its unique expressions.
The AuRoRA Project provides an information page about autism. Have a look at this sentence:
The child seems to be 'cut-off' from the world and as an observer, avoiding social contact and viewing other individuals as providers or observers, without seeming to require social interaction and not knowing how to initiate or partake in social situations.
Again, this type of commentary perpetuates autism myths. Understanding autism requires a different approach as opposed to taking in only what the eyes see. There are several autistic adults heavily blogging in order to speak out against such assumptions.
Check out Amanda Baggs's blogs titled:
Yep we do have nonverbal communication
Dialects of nonverbal language
I also noticed on the AuRoRA autism info page, a reference stating that autistic people lack imagination--another myth that needs to be conquered. Hold on there a second. I suppose I should be liberal and state that autistic lack of imagination *may* be a myth. Let it be known, however, that I would die for a one-in-a-million scholarship to work with Steven Spielberg on the next robot fantasy movie--and especially so if it heavily entailed the use of my imagination.
On a positive note, the robots used in AuRoRA seem awesome! I especially like the Peekee robot provided by Wany Robotics in France.
A few links:
KASPAR, Kinesics And Synchronisation in Personal Assistant Robotics
Design Issues on Interactive Environments for Children with Autism -beware of non-autistic friendly references and assumptions
Disclaimer: As a robot lover, I had--and have--no intention of hurting the feelings of any robots who may stumble upon this post, especially you Crow T. Robot, C-3PO and Johnny 5!
The Nectar of Life: Fostering Special Interests
Published March 26, 2009 @ 10:00AM PT
For many autistics, success often blooms where learning styles and special interests go hand-in-hand. Highlighting and nurturing individual autistic interests are key to fostering self-determination.
Personally, I find little gratification, let alone meaning in life, when I am cut off from doing what drives me. Success goes right out the window when I am forced to do things I am incompatible with. Of course the checkbook needs to be balanced--okay I lied because truthfully I am not in charge of balancing my checkbook, but it's a good example--the house cleaned, as well as mundane errands appeased, but those are temporary distractions. Being forced to live life against my nature is a recipe for disaster, as prolonged adversity equals nothing but the dreaded meltdown.
Last summer, I took my then three-year old autistic son, Moxie, to a classmate get-together at a local park. I was not looking forward to going, yet I didn't want to impose my preferences on Moxie, who actually ended up having a fabulous time. I was overwhelmed by the darting yelping children from the moment I arrived at the park.
Fifteen minutes into the play date, I chanced an escape to the safety of a nearby lone bench. Moxie was happily engrossed in parallel play at a sprinkling water feature. I smiled to myself knowing that it would be a long while before Moxie would bombard me with a demand of any sort.
I let my mind wander while casually observing the other parents. My attention focused on a little autistic boy named Sam who happens to love the alphabet. Sam regularly incorporates letters into his life in the same way that I regularly incorporate several moments of quiet time into mine. Sam lives for letters. I live for stolen quiet tranquil moments.
Empowerment: Where Do You Get Your Information?
Published March 25, 2009 @ 04:18PM PT
I received a long email from a distant relative who wished to inform me of all the things she had learned about autism. Her information had come from an acquaintance of hers whose son is autistic. As I casually scrolled down, information anywhere from autism being genetically passed only from father to child to how autism can be cured with plant-based "miracle" elixirs jumped out at me. On and on the email went. By the end, I had no idea how I would politely respond to the ridiculous carnage of autism-myths staring back at me in feckless successive rows.
Furthermore, did I even want to begin wacking such overgrown weeds? After all, my relative had only meant to impress me with her new found knowledge. She was guilty of nothing but trying to make a connection. Unfortunately, her new views, and those of her acquaintance, were magnificently erroneous to say the least. Where had she gone wrong?
The next morning, I diplomatically began rearranging, correcting, and piecing together a new story of autism. Most of all, I was on a mission to empower this relative of mine to seek the truth for herself. I wanted to craft her a key to a car that she would need to be in control of driving.
As I composed the return email, my thoughts likened learning about autism to shopping for a home loan. Buying a house is a big deal--for most of us anyway. Though some people jump at the first loan offer, a large percentage of people study up and shop around. We throw on caps of wisdom, become discerning, and are on the lookout for any loopholes that could cause potentially agonizing losses.
So why do we just accept any old information, from any old source, about things we may not know as much about such as autism, deafness, or quantum physics? Is it because we are easily overwhelmed? Is there just too much information to sort through?
I suppose I have somewhat of a leg up seeing as to how autism is one of my special interests. But I am in a perpetual state of learning, pondering, and redefining when it comes to autism. Even more so, I like to play devil's advocate.
Last year, I was a guest speaker at an autism conference for parents of autistic children. Several parents asked me for my advice on how to go about learning more about autism. They were especially interested in the perspectives of other autistic adults, which made me beam, but they were also hungry for valid information about autism in general.
A few snippets of advice I offered:
- If you were vehemently determined to run for President of the United States--or whatever country have you--and you were appointed to speak on something you knew little about, would you get up in front of your audience and spew forth the information your neighbor down the street gave you without a second thought?
- To be well-informed, you've got to drive your own car. Go shopping, try different things, and keep an open mind. Last but not least, take what you need and leave the rest. We're not all going to agree. After all, this is earth and we are only human.
- When learning about autism, it is best to first become a student. The teaching part can come later. Study both what you agree with and what you don't. Be well-rounded and get those gears turning.
Change.org's Kristina Chew and Dora Raymaker have provided some fabulous suggestions for reading materials. I also encourage checking out local libraries and favorite bookstores.
Consider attending conferences such as Autreat by Autism Network International, if feasible, and most importantly, pay attention to what autistic individuals--of any age--have to say.
If you're a fan of reading the latest research findings, a good way to deepen your understanding of proposed research is to be a discerning critic. Check out this link:
