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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15 December 2009

Parents in the Autism World

Do Autistic self advocates view parents of autistic individuals as enemies? Do they perceive parents who support organizations such as Autism Speaks as opponents?

It should not be forgotten that a portion of Autistic self advocates are parents of autistic children themselves.

Enemy is a strong word to use toward parents who are most often at the hands/mercy of educational and medical service providers. Information about autism that parents may receive from these service providers often does not focus on self advocacy and equal rights for autistic children. Instead, provided information tends to focus on only medical views of the autistic condition, in addition to services and treatments provided for autistic children. While some of the information contained in the references may be helpful and worthwhile, there is often nothing educating parents on the existence of the adult Autistic community and its literature and organizations. Parents are given little to nothing in regards to the concepts of autistic self advocacy, disability rights, and the social model of autism.

A parent's main concern is going to be to help their child by utilizing whatever means are available. Good Parenting 101 = Help Your Child No Matter What. Parents will naturally lean toward autism-focused groups and/or organizations offering help and support. Inspecting the inner-workings of such groups and organizations may be the last thing on a parent's mind when they are knee-deep in making sense of the new course or path their life has taken.

People who have never been exposed to disability on a wide scale cannot even begin to fathom why an autism-focused organization--such as Autism Speaks--may not necessarily be all that it claims to be. After all, why on earth would organizations that are claiming to help the disabled have nothing but only the best of intentions?

Self advocacy and empowerment of the disabled is a giant step in thinking when coming from a place of needing healing, help, and support, especially when the support services offered have come from a one-sided medical perspective.

Some parents of autistic children are extremely proactive, sensitive, and thoughtful. Some parents latch on to the first thing they see/try and cling like a vine. Some parents reach out and contact other parents of children on the spectrum and ask what those parents are doing. Some parents go home, Google autism, and BOOM: Autism Speaks and Autism Research Institute appear.

It is of significant importance to remember that heart-broken well-meaning parents are going to be quite confused when they see Autistic adults protesting an organization that has essentially served as a resource to parents of autistic children. Many parents who feel they have done a decent job navigating the world of autism are going to be shocked when they see a protest sign with a message reading: Autism Speaks Does Not Speak for Us! Or: Nothing About Us Without Us!

Autistic Self Advocacy Network (ASAN), The Autism Acceptance Project (TAAProject), and TASH are organizations that are just as valid for parents to know about and utilize as resources. Are we fully preparing autistic children for life if we ignore the voices of autistic adults? What message does that send to ignore autistic adults and exclude them from important decision-making processes?

Thanks to the intolerant structure of our society, many people need to be taught to release fear, pity, and myth in order to accept what is different. It is a shame that we seem to be born with acceptance and tolerance intact, however, some of us are poisoned by the social climate we inhabit (ex: media throwing around the word retard as if there is no consequence, therefore feeding and perpetuating damaging conscious and subconscious stereotypes).

Many upright well-intentioned people do not know how to accept autism because it is not being taught on a wide enough scale. People have to want to accept autism, and only then can they Google it and make informed decisions regarding the sources presented.

There is a great void to be filled. As far as the Autistic community is concerned, we have a lot in common with parents, only it needs to be explained that the *means* of cure is not effective toward our common ends. I would like to see the growth of auxiliaries to autistic self advocacy organizations and groups so that parents may get involved in a pro-self advocacy spirit.

Parents of autistic children are not the antagonists of the Autistic community. They are potentially our greatest support.

[26 March 2010: A few readers have commented that they DO NOT feel that tolerance is innate from birth. While I agree that tolerance must be taught from as early an age as possible, the sentence a few paragraphs above, "
It is a shame that we seem to be born with acceptance and tolerance intact..." is intended to show that we are products of our environments. For example, children who are raised in homes that teach love and tolerance have a high chance of being loving and tolerant in adulthood.]

08 December 2009

ASAN seeks advocates to fight against school abuse

Bipartisan federal legislation to protect children from dangerous restraint and seclusion in classrooms will be introduced this Wednesday by U.S. Reps. George Miller (D-CA), who is chairman of the House Education and Labor Committee, and Cathy McMorris Rodgers (R-WA), who is a member of that committee, as well as the Vice Chair of the House Republican Conference. Their press conference will be webcast live from the Education and Labor Committee website at http://edlabor.house.gov at 11:00 AM EST on Wednesday, December 9, 2009.

A recent investigation by the U.S. Government Accountability Office found numerous reports of injury and, in some cases, death as a result of the inappropriate use of restraint and seclusion in classrooms. Many victims were children with disabilities. At present, there are no federal policies that prevent the misuse of restraint and seclusion in schools, and many states also lack sufficient regulation to protect children from these harmful practices.

The primary focus of the legislation above is to limit restraint and seclusion to where it will only be allowed in the event of an imminent danger (to the person or to others) and only if alternate techniques have proven ineffective. There is funding available that will flow to states to create training programs on alternatives to restraint and seclusion, including techniques such as de-escalation, conflict prevention, and conflict management.

ASAN is currently looking for volunteers to help with efforts to pass legislation that will protect students against school abuse. If you would like to help ASAN spread the word about these upcoming advocacy efforts, please write to info@autisticadvocacy.org (or visit Contact ASAN) to volunteer. Enter "Restraint and seclusion" in your email subject line. 

03 December 2009

Survey to Assess Needs for Improved Course Designs

The Academic Autistic Spectrum Partnership in Research and Education believes in promoting research that is inclusive, respectful, accessible and relevant to the autistic community. As such, AASPIRE is writing to you to let you know about a non-AASPIRE study that shares AASPIRE's values. 

Please see below for more information about a study being conducted by Christopher Wyatt. 

AASPIRE hopes you may be interested in participating in this study. -The AASPIRE Team 

Survey to Assess Needs for Improved Course Designs 

As colleges and universities offer more courses online, it is important that we consider how students with autism spectrum disorders approach online communities, especially online classes. My experiences as a diagnosed high-functioning autistic student and instructor have led me to question how online courses could be designed to better serve students with autism spectrum disorders. I am conducting a survey, seeking to determine if there are characteristics of some online communities ASD individuals prefer. I am also interested in learning what qualities of online communities might be disliked by individuals with ASDs. 

If you are an individual with an officially diagnosed autism spectrum disorder interested in offering opinions about online communities, I hope you will consider completing this brief online survey. You do not have to be a student. However, you should have some experiences with online communities so you can explain what design qualities are or are not appealing in various communities. 

This will be an anonymous survey. Only your answers to interview questions will be saved and referenced during the study. The survey is offered via a secure server and all data will be destroyed after analysis is complete. 

If you are interested in participating in these interviews, please visit the following survey link:

Thank you, Christopher Scott Wyatt Doctoral Candidate 
Rhetoric; Scientific and Technical Communication 
Digital Literacy and Pedagogy 
Dept. of Writing Studies 
University of Minnesota 

This study is referenced by University of Minnesota IRB Code Number 0909P72516.

*Study closes 31 December 2009

11 November 2009

Stirring Up Action: The Winds of Disability

The greatest disability is not of the body, but of a closed mind...

From whom do we access information that leads us to gather facts and to form opinions about disabilities? Do we turn to academics, doctors, instructors, and therapists? Governing bodies, media, and schools? Family and friends? How do we process and understand the varying approaches, facts, and opinions? Who do we decide will bear the most weight in helping us to create internal dialogues and references for understanding disability? And what factors lead us to believe one source, or sources, over another? Do we think with our hearts? Or do we think about what is acceptable to mainstream society?

Where are the voices of the disabled? And why is their public representation often meager, or token, at best? Why does one need to go through a personal awakening and revelation to conclude that the voices of those who are disabled not only exist, but are strong, valid, and vibrant?

Beneath the myopic confines and constructions of those who claim to know best are the whispering voices of the disabled. Voices that, once you stop to tune into them, become very loud, honest, insightful, meaningful, and real.

The number of books written by academics and clinicians that are marketed to parents of young children who are disabled is massive in comparison to the number of books written by disabled people. This is a typical example of the the damaging myth that disabled people cannot possibly speak for themselves. Something as innocent as a book is a prominent reinforcer that disabled people should be seen (if even that), but not heard.

Media plays a colossal role in shaping public perception. Unfortunately, disability in the media is often centered around fear and pity, or treated with benevolence and do-goodery. Well-intentioned or not, such messages are adverse, ruinous, and useless in raising and shaping effective and positive mass consciousness. Conditioning people to mourn the disabled counters proactive messages and stifles the chance for understanding the scope of disability. How is the disabled self-advocate, who has fought hard for the right to self-esteem, supposed to feel accepted and welcome when media and medical establishments often paint all conditions with the same authoritative brush? The Disability community has waged a grueling crusade (which is often challenged, ignored, or silenced) for equality, integration, respect, and support.

Unfortunately, most people are often exposed to only a small handful of persons experiencing a disability. With such little contact, that may be laden with discomfort, misunderstanding, and stigma, we are sheltering ourselves from the rich reality and spectrum of disability. 

As a person who is both on the autistic spectrum and deaf, I have tolerance neither for illiterate comparisons (such as comparing autism to a fatal car accident), nor being regarded with suspicion when I do not act or appear the same as other autistic or deaf people that a person has met, lived with, or seen. Why is it okay with so many people to view disabled people with disbelief and/or skepticism when we do not fit a mold that is often not created by us in the first place? Why are we often judged with such a heavy hand? And who decided that it is okay to take away our voices and to speak for us without including us?

Challenging benevolence can lead to belligerence, with indignant voices saying: You absolutely cannot challenge altruism, charity, do-goodery, and walk-a-thons for the disabled! To that, the Disability community says: Oh yes we can. Nothing About Us Without Us!

The winds of disability are calling all citizens to action...

Norman Kunc, a well-known speaker on the topic of disability, focuses on the educational rights of students with disabilities, as well as how communities and schools can build a sense of belonging devoid of false allegiances and perceived common enemies. Norman is an especially moving and powerful speaker who owns his voice. He once said, "No matter how far technology advances, disability will always be here because it is a normal part of human diversity."

Fortunately, it is becoming more common for governing bodies to make an effort to reach out and include disabled people (and more than just one *token* disabled person) in their decision-making processes. For example, the Oregon Commission on Autism Spectrum Disorder has taken strides by including autistic self-advocates on both their committee and subcommittees.

Let's step forward to nourish and promote disability advocacy and empowerment, as well as leadership and public education. Support the voices of disabled people. Collective thinking and action is the key to transforming the hearts and minds of humankind in regards to the place and value people with disabilities have in society.

For further exploration:

American Association of People with Disabilities (AAPD)

Self Advocates Becoming Empowered (SABE)

TASH - Disability Advocacy Worldwide

It is a fine thing to have ability, but the ability to discover ability in others is the true test. -Elbert Hubbard

07 November 2009

Disability Writes

What is a normal human, and who is allowed to define the boundaries of normal? Does *normal* include the fact that no matter how far technology reaches, disability will always be an intrinsic part of human diversity and society? Though some people are born disabled, most people, as they age, will experience some degree of disability, whether mild, moderate, severe, or profound.

Disabled individuals have a right to be disabled. In place of overeager benevolence and pity, disabled people need innovation, reciprocity, respect, and support to be who are they are in life. There is nothing horrific or shameful about being different, disabled, or unique. Horrific and shameful are words that belong to the negative attitudes, prejudice, and stigma many disabled people face. 

Here are some books related to both disability rights and disability studies recommended by a few acquaintances, friends, and me.
  • Bending Over Backwards: Essays on Disability and the Body by Lennard Davis and Michael Berube. This book takes a critical look at what we define as normalcy.
  • Claiming Disability: Knowledge and Identity by Simi Linton. This book offers insight into the social model of disability verses the medical model. 
  • Deaf Subjects: Between Identities and Places by Brenda Jo Brueggemann. This book explores the power of American Sign Language, as well as the diversity within the Deaf community, inclusive of deaf identity.
  • Disability Theory by Tobin Anthony Siebers. This book has been touted as a field-defining book. Melanie Yergeau especially liked Siebers' discussion about how architecture and our desire for beautiful buildings reflects our desire for beautiful bodies. 
  • Embodied Rhetorics: Disability in Language and Culture by Professor James C Wilson PhD et al. C.S. Wyatt shares that this book is a good overview and that he especially likes "Am I MS?" and "(Working with) The Rhetoric of Affliction."
  • No Pity: People with Disabilities Forging a New Civil Rights Movement by Joseph P. Shapiro. This book explores societal views on disability.
  • Open Your Eyes: Deaf Studies Talking by H-Dirksen L. Bauman (Editor). This book has many Deaf contributors and offers a myriad of valuable insights on the true definition of normalcy.
  • Recovering Bodies: Illness, Disability, and Life Writing by G. Thomas Couser. Melanie Yergeau relates that Couser describes the ways in which the literary marketplace restricts disability writings into stock and overdetermined narratives, and also in the ways in which people with disabilities (PWD) have begun to *speak* back. 

A response from C.S. Wyatt to common disability myths about autism:

It's good to know we [individuals on the autistic spectrum] go against the stereotypes of all being physicists, math savants, or computer geeks. Oh yeah, I came from programming. Still, I think any cultural studies/anthropological views of disabilities is useful and proves we not only aren't stereotypes, but that we have interests beyond whatever it is people are using to define us.

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 

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 

Send an email to Dora Raymaker at 

Make a telephone call to Dr. Christina Nicolaidis at 

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:

26 September 2009

Making History: 9/26/09

Nothing About Us Without Us! 

We are not puzzles, we are people. 

Autism Speaks does not speak for me.

Autistic Self Advocacy Network is grateful to Oregon's KOIN-TV and KPTV FOX 12, for taking the time to hear ASAN's message. Both news stations brought positive attention to ASAN's cause, which aims to advance the principles of the disability rights movement in the world of autism, as well as to ensure equal access, opportunities, and rights in society for individuals on the spectrum.

The segments that aired Saturday, September 26th, are a monumental victory for the Autistic community, and for the Disability community as a whole. History was made when ASAN-PDX's protest against Autism Speaks was documented by two state news channels. 

To have powerful footage of our political action to gain equal civil rights is golden. 

To learn more, visit these links:

Never, ever, ever, ever, ever, ever, ever, give up. Never give up. Never give up. Never give up. -Winston Churchill

17 September 2009

The Fingerprint of Autism

Autistic Spectrum Condition often evolves (in varying degrees) from childhood to adulthood. It is important to remember that developmental disability does not mean inability to develop. Personally, there is a significant difference between my awareness and self-determination in adulthood when compared to my childhood.

Many autistic individuals have several coping mechanisms and tactics in place that allow them to experience the world in a more productive way. Often, as children, we do not yet understand what bothers or overstimulates us. As we learn more about ourselves, we do. Self-awareness is key to change and growth. And awareness is a natural part of human evolution--even for autistic individuals. Some of us evolve more than others. Some of us are more self-determined than others. This is not a positive or a negative, it just is. Autism is as individual as fingerprints: if you've met one autistic person, you've met one autistic person.

A trademark of autism is uneven skills (ex: successful at a job of high status, yet lacking self-care skills, or smooth at conversing on specific topics, yet at a loss when the subject changes). Just as the rest of the human race, autistic people also show variance in personalities. As anyone else, we navigate our way through life with our own unique personal challenges. So why are many people stumped when autistic individuals exhibit differences amongst each other? Are all deaf people the same? No. Are all blue-eyed people the same? No. Are all autistic people the same? No.

Background, community, education-level, family relations, life experiences, etc. all play just as much a part in the autistic person's life as in any other human's life. Boxing autism into categories of severity or appearance is a strong contributor to the lack of diagnosis (or misdiagnosis) in females. This also applies to males.

Further reading:

08 September 2009

Autistic Aspirations: Do We Have the Same Chances?

I love books. I love writing. That's a photo of the Young Adult section at Forbidden Planet. That's right, the awesome UK bookstore on 179 Shaftesbury Avenue (London). There's also a Forbidden Planet in New York City.

E.'s current goal = published author.

Imagine the excitement of having your novel showcased in a bookstore window for passersby to see. How about a shelf dedicated to your novel or book series?

Over the last two months, I've been on an Aspitude! hiatus in order to complete a manuscript. My project is a Young Adult read that fits into both the multicultural and paranormal genres. Will it be published? Will it be graced with an intriguing cover? Will it be placed on the same shelves next to other young adults titles that we know and love?

Getting published essentially boils down to the luck and skill of the writer. That noted, if both skill and luck are maximized, will I be passed over anyway because I often use non-standard communication?

Individuals with unique communication styles often remain in the dark, living behind shadows from which they are allowed only to peek and watch from, cut off from equal participation in a world that often spins too fast.

Writing is my ideal mode of communication. Written words come more quickly to me than speech. Perhaps I can compose a decent query letter to a writer's agent, but would I be just as convincing over the phone? Sometimes I do things that non-autistic people think are strange--like providing unexpected responses, or not looking people in the eyes as I speak. Despite my differences, I deserve to be judged with a fair hand.

All people have fears. But for some, we carry not only our allotted fears, but our fears of being passed over or misunderstood because we are different.

13 July 2009

iPhone? iPod touch? Proloquo!

[Ed.: after posting, a reader brought it to my attention that there is a difference between what exactly is offered between Apple's AssistiveWare Proloquo link and the Proloquo2Go link. Both names are highlighted to facilitate comparison. Best wishes...]

Does Apple focus on accessibility? You bet!

In addition to Hands on Video Relay Services for Deaf and Hard of Hearing folks and MacCaption, I am thrilled with Proloquo, which assists individuals who have vision or speech issues and/or difficulties.

Paying up to $10,000 for a communication device is no drop in the bucket. Proloquo is an affordable Alternative and Augmentative Communication, AAC, software program suitable for children, teens, and adults.

What is an AAC device? Via Wikipedia's definition: AAC is used by individuals with communication disorders for whom speech is temporarily or permanently inadequate to meet all or some of their communication needs. Speech may be replaced or augmented by using a variety of modes including body language, gesture, vocalizations, sign language, writing, and/or augmentative communication aids.

How does it work? If you know how to use an iPhone or an iPod touch (it's easy to learn), then you're set to go. Click here to view a how-to video regarding Proloquo.

Leslie Clark, mother of seven-year old autistic JW, says Proloquo has changed her son's life. Matter of fact, she now knows JW's favorite restaurant, which happens to be a local Chinese buffet.

Proloquo is also suitable for part-time AAC users. Though my autistic four-year old son is verbal, he struggles to communicate at times--especially under stress. My son has his good and bad communication days. There are times when he is able to use effective verbal communication and then times where he struggles to tell me something as simple as what he wants to eat. Proloquo is definitely an affordable option to supplement his communication. I'm smiling just thinking about how I can program my contact info into Proloquo as an added safety measure for my son.

Further articles and resources: