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Paula Durbin-Westby
Louisa, VA
Recent Activity
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Paula commented on the petition |I am signing because this is immoral, even if hospital "ethicists" have somehow given the go-ahead to refuse life to a child with a disability.
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Paula signed the petition |
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Paula signed the petition | -
Paula commented on the petition |
Recently the Autistic Self Advocacy Network launched a petition opposing the CDC's proposed "wandering code." Please sign the petition, and more importantly, contact Donna Pickett, Co-Chair of the Coordination and Maintenance Committee, at DPickett@cdc.gov to let her know that this proposed code is misguided, potentially dangerous to people with disabilities including autism, is not even remotely based on scientific evidence, and calls into question the CDC's motives and credibility.
The CDC proposal is on page 17 of this long document.: http://www.cdc.gov/nchs/data/icd9/TopicpacketforMarch2011_HA1.pdf
The CDC proposal is not evidence-based. It is based on speculative "research" and would include people who make *choices* to leave a situation, such as an abusive guardianship scenario. It also does not seem to me to actually protect anyone, but just to add another diagnosis code. The purpose of the diagnosis code, according to the CDC, is to promote "data collection" which "could" lead to awareness and appropriate responses. It could also lead to controlling a person's legitimate choices, and if the code follows a person throughout their lifetime, could have unintended limiting consequences later in life. Awareness could be increased through other means, and safety measures could be taken without having a diagnostic code.The Autism Science Foundation has a post supporting the wandering code. It's interesting that the Autism Science Foundation supports an added diagnostic code that is not based on even the sketchiest of evidence-based methodology. The NAA has a survey of parents that suggests that 92% of parents asked said their child had wandered off at least once. Not that the NAA has resources to set up an experiment but I wonder if parents in a control group had been asked, if they also might have said their non-autistic child had *also* "wandered off at least once." The fact that the CDC, which is supposed to be a reputable, science-based federal agency, is basing the decision to add a wandering code, brings the CDC's credibility into question. All six of the supposed benefits mentioned by the Autism Science Foundation, that would supposedly come from adding a wandering code, are speculative. There is no indication that a wandering code would make people more aware, more safe, be subject to less restraint rather than more. I can imagine someone with a "wandering" diagnosis being restrained for convenience by special education personnel, because who would want to take the risk of having someone wander off while they were responsible?!
A child who receives a wandering diagnosis will carry it into adulthood. Some of the unintended consequences of this could be increased guardianship, inability to escape from abusive situations, limitations on adult people's legitimate choices to go places without informing others, and assumptions that people with disabilities need "more supervision" throughout the lifespan, among others. The ONE thing that a wandering code will do is increase "data collection," which would be a good reason for the CDC to adopt it. One "data collection" conversation coming out of the discussion on wandering, at the April 30 2009 full IACC meeting, included contacting people whose family members had died a "tragic death" to donate brain tissue. That short discussion can be found at page 319-321 of this document:
http://www.iacc.hhs.gov/events/2010/transcript_043010.pdfInterestingly, in the same discussion, several more appropriate ways of dealing with wandering and safety were brought up and discussed, such as Project Lifesaver tracking equipment, swimming lessons, law enforcement training, and home security measures. No wandering code can address these practical matters.
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Paula signed the petition | -
Paula commented on the article |I haven't ever seen "mild" used in any helpful sort of way.
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Paula commented on the article |I keep trying to come up with an adequate, even eloquent, response to your friend's situation, but I can't, mostly because I am in the same situation. It's relentless. Because I have an employment history, I would never qualify for the kinds of services I need, and people expect me to be able to do those things, since I can work. I can advocate for better and more appropriate, autistic-oriented services for others (rather than one-size-fits-all, or inaccessible to autistics for various reasons), though, and am working on that in several areas.
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Paula commented on the article |*Humanity* is equated with violence.
No studies to date show that autism is equated with *more* violence than non-autism is. -
Paula commented on the article |My church has not had a new photo directory since 2003. Waah!
Impact
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Organizations
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NATIONAL AUTISM ASSOCIATION1 Action 0 Recruits -
The Autistic Self-Advocacy Network3 Actions 0 Recruits
