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