~Rumi

All day I think about it, then at night I say it. Where did I come from, and what am I supposed to be doing? I have no idea. My soul is from elsewhere, I'm sure of that. And I intend to end up there...Who looks out with my eyes? What is the soul? I cannot stop asking. If I could taste one sip of an answer, I could break out of this prison...I didn't come here of my own accord, and I can't leave that way. Whoever brought me here will have to take me home.

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27 October 2009

AASPIRE/ASAN: Project Gateway

Click me to head to the project!






Be Included in Autism Research 

The Academic Autistic Spectrum Partnership in Research and Education (AASPIRE) believes in research WITH autistic adults, not just ABOUT autistic adults. 

The AASPIRE Gateway Project is an online gateway to research that fulfills AASPIRE's mission to 

encourage the inclusion of autistic adults in matters which directly affect them; 

include autistic adults as equal partners in research about autism; 

answer research questions that are considered relevant by the autistic community; 

use research findings to effect positive change for people on the autistic spectrum. 

The AASPIRE Gateway Project needs your help, whether or not you are on the autistic spectrum. 

If you are at least 18 years old and have access to the Internet, you can participate in a series of continuing online research studies that help AASPIRE achieve its mission. Upcoming studies address topics such as healthcare, Internet use, and problem-solving. 

To participate in the AASPIRE Gateway Project: 

1. Register online for an AASPIRE Gateway account starting at 
www.aaspire.org/gateway

2. Take the online AASPIRE Gateway Survey. The survey takes about 20 minutes to complete. 

3. You will be notified by email when new studies for which you are eligible become available. 

Completing the survey entitles you to a 1 in 25 chance to win a $25 Amazon gift certificate. 

If you would like to learn more about AASPIRE or the AASPIRE the Gateway Project, you can

Go to the Gateway home page at 
www.aaspire.org/gateway

Send an email to Dora Raymaker at 
dora@aaspireproject.org

Make a telephone call to Dr. Christina Nicolaidis at 
1-503-494-9602


OHSU IRB # 3762; UW     IRB# SE-2008-0749
                                         
Principal Investigators: Christina Nicolaidis, MD, MPH, Oregon Health & Science University   

Morton Ann Gernsbacher, PhD, University of Wisconsin-Madison
Katherine McDonald, PhD, Portland State University
Dora Raymaker, Autistic Self-Advocacy Network


Please pass this information along to your friends!

20 October 2009

World Autism Interviews: Kate Goldfield/New York

It's not uncommon for autistic people to face ignorant assumptions and myths about autism from clinicians, community helpers, doctors, psychiatrists, psychologists, and even friends or relatives.

There is a myriad of misinformation about autism circulating throughout worldwide veins. Sometimes the people autistic individuals are counting on most, are capable of damaging those they claim to help, thanks to inexperience, lack of appropriate information, and narrow-mindedness. 

It is often through an encounter with prejudice that an autistic self advocate is born. 

Kate Goldfield lives in Ballston Spa, New York. 

E: Please tell us how you became a self-advocate.

Kate: It was just another day. I was in my junior year of college, six months or so after I had learned that I have Asperger's. I hadn't said much about it to anyone because I found no reason to, and I didn't know if it was the kind of thing people would be receptive to hearing. After all, I was still trying to figure out Asperger's for myself. 

Everything changed after an incident at my college library.

One day, I was especially groggy and out of it, as well as overwhelmed. I felt as if I couldn't wake up or focus. The smallest things overstimulated me, such as people's voices or people walking around. I needed a break from my work, so I went into the basement bathroom of my college library. Hardly anyone ever uses it, so it assures the most privacy. I entered a stall and locked it behind me, letting my mind run loose with all of its thoughts and feelings. Some of the things on my mind, I said aloud, as self-dialogue is a big stress reliever for me. If a person entered the bathroom, I immediately stopped talking. 

Thoughts came and went so fast that it was overwhelming. Thoughts were pushing at my brain to get out. My thoughts could not be quieted until I said them aloud, or until I reasoned through the problems I was struggling with out loud to myself. Often, I went down to this basement bathroom when I needed to work something out in my head. After spending a few minutes in the bathroom, and working through my thoughts, I always returned to my task. 

Though it is weird to talk to yourself, doing so is just one of the many coping mechanisms that an adult with Asperger's may use to better navigate and cope with the world.

On the day of the incident at my college, I heard someone enter the bathroom, so I stopped talking. Ten minutes or so later, I heard the door open, and a woman asked me if I was okay. Used to hearing that question, I said, "Yeah, I'm fine. Just a bit overwhelmed. I'll be fine."

Expecting to be left alone, I was instead asked, "Are you sure?" 

The next voice I heard was that of a college security officer asking me to exit the bathroom. I did so, gasping as I realized that the college security was involved. 

"Why were you in there so long?" asked the lady standing near the security officer.

"I was just trying to calm myself down. You know...just taking a break." I hesitated before adding, "I have Asperger's Syndrome, and one of the symptoms is severe sensory issues and overload. If I take a few minutes for a time out, I feel better."

The lady who had started this whole incident, turned to the security officer and said, "I'm a psychiatric student at John's Hopkins about to get my degree. She can't have Asperger's because she can talk. Asperger's is like autism, and she couldn't talk if she had autism."

I tried to convince this lady that she was mistaken, and that Asperger's is very different from what she may have learned. I mentioned that people with Asperger's certainly could talk, and often did so quite well. In response, she threw around a bunch of loaded psychiatric terms about emotional instability that obviously impressed and scared the college security officers. In turn, they would no longer listen to me. 

"We need to take you to the office and figure out what to do with you," said one of the officers. 

"What? I'm supposed to meet someone in five minutes. I have work to do," I said.

"No. You need to come with us."

I was taken to a cavernous gloomy office in the basement of the library that I have never been to. I was questioned for about an hour, about both Asperger's, and my behavior. I was shaking and so overwhelmed that I could barely talk, but I managed to defend myself, even though nothing I said made a difference. Over my head, there was talk of calling the paramedics to escort me to a hospital. Then a member of the Baltimore City Police was called in for reasons I still do not quite understand. I was not yelling at or threatening anyone back in the bathroom. I had simply been talking to myself. 

The officers called people I knew to try and make a confirmation, but no one was available. I tried to convince them that I was fine, but again, they would not listen. I was desperate to keep the officers from taking control over me, God forbid send me to a hospital when I was just taking a bathroom break from my sociology homework. An hour later, one of the officers said, "She really does seem fine now. She seems much better." Inside, I rolled my eyes, and asked to be dismissed. Finally, I was given their consent. 

Shaken, I left and made my way back to my dorm room to process everything that had happened to me. I met my friend that I was supposed to meet earlier, and told her everything that had happened. She was appalled. 

Eventually, I received several heartfelt apologies from both the Residence Life, as well as the Security offices on campus. I never received a letter from the ignorant lady from John's Hopkins who had started the incident, and I often think about writing her a letter. 

This situation gave me a desire to communicate the experience of Asperger's to the world. I want to lay it down unequivocally: I am what an adult with Asperger's looks like. Please be aware that we may have different needs than others. Please do not be alarmed if we present behavior that is unfamiliar to you. 

Motivated, I wrote an editorial about what Asperger's is, and sent it to the Baltimore Sun. I was stunned a few days later when I received a phone call informing me that my article would be published. The article ran on Thanksgiving Day, and I got more than two dozen email replies with people telling me that they saw their son, daughter, friend, or loved one in the words I wrote. I was stunned by the response, and very happy. I felt validated, and it was wonderful to know that I made a difference. 

From there, I was hooked on self-advocacy. I have been invited to speak at two autism conferences in the Northeast. Essays of mine have been published in autism-focused magazines. 

I have found my voice; a voice that allows me to educate the world on what being an adult with Asperger's is like. A voice that gives me a sense of meaningfulness and purpose.

I shudder to think of the fate of the people that lady from John's Hopkins has treated. I still wish I could have a talk with this lady. But who knows, maybe she has read one of my articles. If it weren't for her, I'd never be doing what I love, and so maybe it was a good incident after all.

E: Thank you for sharing your story.


If you've met one autistic person, you've met one autistic person.

18 October 2009

World Autism Interviews: Applied Behavior Analysis with Anonymous

You have to go to these institutes and just observe a full day to get a sense of the chaos around you. This chaos breeds hostility, poor judgement, and abuse. Imagine: six or more kids with six or more therapists sitting in a plain room with very colorful cube-like plastic furniture, and televisions on every table top. Different movies being played at different times for brief moments and then screaming from one corner, a full-on wrestling match in another, with six therapists each giving different demands and offering artificial praise. It is a lot of stimulation. -Anonymous

*Please note that this interview is not an attack against well-intentioned parents who use Applied Behavior Analysis. I personally know a few parents who employ ABA in the home and these parents are great people with their children's best interests at heart. ABA is, however, controversial and questionable.

Behavior analysis is a science that studies the behavior of people, as well as the behavior of animals. It is a science (though some note it as a pseudo-science) attempting to explain, predict, record, and understand behavior. Applied Behavior Analysis is used as a teaching tool for autistic children.

Some examples of controversies surrounding ABA: lack of autistic rights (ex: psychodynamic acceptance), misinformation surrounding ABA, discrepancies in the training of ABA practitioners despite the existence of a Behavior Analyst Certification Board, widespread misunderstanding of autistic behavior, et cetera.


Interview with Anonymous

E: What drew you into the field of Applied Behavior Analysis? What type of training did you receive, and what qualifications were required for you to be hired?

Anonymous: I took an Experimental Analysis Behavior course where I was exposed to Behaviorism. Toward the end of the term, my class completed an introduction to B.F. Skinner's Verbal Behavior. A guest speaker, the director of a language treatment clinic, visited my class to give a presentation. The director showed us how the theories we had studied applied to treating children with developmental disabilities. He spoke about his cases, mentioning that his clinic had over an 80% success rate. I was hooked, so I applied to intern. I loved playing with the children, as I related to them well, plus I had a knack for working with difficult children. I had just turned twenty-one years old, and this work gave me a way of understanding my own social interactions.

After graduating with a B.S. in Applied Psychology, I had to go through a one-week ABA training again, where materials from both my class and interning were reviewed. Additionally, there were trainings on how to respond to difficult behaviors by giving alternative demands, ignoring the behavior, et cetera. Assault training was also incorporated where we were taught combat moves for defense of both the children and ourselves. We also learned policies and protocols.

As far as qualifications, the only requirement was to possess a B.A. degree, preferably in psychology, social work, or another similar concentration.

E: How long did you work as an ABA therapist? Did you ever begin to have misgivings or second thoughts about this work?

Anonymous: I officially worked as a therapist for one year.

One day, I was sitting next to one of my favorite clients. He was the sweetest nonverbal foodie (he ate everything) who smiled often, and listened well. We had just gone through his set of verbal training programs, and we were having a relaxing break. He was stimming [ex: finger flicking/rippling, humming, rocking, spinning] on a musical toy and then he began hyper hand-flapping. My job was to click each hand flap and *reset* his hands every time. I sat back in realization and wondered to myself: is this treatment truly helping him to become independent? Will he be institutionalized for his entire life? Why does it matter if he hand flaps? Will he find love in his life?

During this rush of emotions, it was like I saw a film reel pass my eyes, and I could see my client sitting in a home twenty years into the future, having never been given an opportunity to grow to his full potential. He had been stunted by diagnosis after diagnosis, prescription after prescription, and treatment after treatment.

How do we expect to *socialize* someone if we never give them a chance to interact socially, and we treat them as if they are rehabilitated animals at a nature center of some sort?

I began to take on a new attitude regarding therapy. I changed the way I connected with the children I worked with, avoiding operationalized responses, unless I was being monitored. Though I utilized the philosophy I was trained in, I wanted mostly to make sure the kids were able to have fun, to feel love, and to have a chance to communicate with me in their own language. I formed real friendships with my clients.

Consistent environments are conducive to learning, but boredom hinders learning. I wanted to motivate learning, and not just prove learning to parents, insurance companies, and supervisors.

Due to the lack of joy in many of the children I saw, several of them exhibited depressive behaviors. There were few toys in the playrooms, and so I requested that new toys be purchased, especially since the center was charging exorbitant fees for treatments. Was there no person who could not stop to think about what those children wanted?

Some therapists assume they are great at knowing what children think because children's thoughts--in their minds--could be nothing more than simple.

E: Did you ever witness any incidents that you felt either violated human rights, or disregarded a client's, or an individual's, right to dignity?

Anonymous: There were times when I witnessed a therapist become fed up with a particularly difficult client, and this therapist would pinch the nipples to get him to stop the annoying behavior. The nipple pinching method was shown to me by my closest colleague. Pinching was a common method of abuse I witnessed. Pinching is easy to do, as well as difficult to observe; we were all so hands-on with the children.

E: Thank you, Anonymous, for your interview.

Further reading: