Online petitions are easy to sign and almost meaningless, but it feels good to take some stand, right? What's interesting to examine is how appeals to sign petitions are made. When is inflammatory, sensationalized rhetoric appropriate and when should appeals be made using evidence-based information presented in a compelling fashion? If you guessed that my take is evidence-based before inflammatory rhetoric is always the way to go, you'd be right.
So which position does this petition from ASAN use? I'll let readers judge.
The petition begins, "Will you help us stand up for disability rights?" Right from the bat, there's an attempt to engage the reader's emotions with the suggestion that disability rights are being denied (and there are times when disability rights sounds really wrong--since when does a disability have rights? People have rights).
It continues, "Last week, the ICD-9-CM Coordination and Maintenance Committee met to discuss the future of medical coding in the United States. The ICD-9-CM stands for the International Classification of Diseases, Ninth Revision, Clinical Modification, and is the US government's official system of assigning codes to medical diagnoses and procedures." These are informational sentences setting up the coming claims.
ASAN's petition then states, "The day before the meeting, the Centers for Disease Control and Prevention (CDC) posted for the first time information on the codes under consideration - including a new medical diagnosis for "wandering" related behavior in children and adults on the autism spectrum and with other developmental disabilities." This sentence implies complicity by the CDC to deny the public their right to weigh in and further sets the tone.
Having set the reader up that the government is attempting to deny disability rights while also keeping the public in the dark so as to avoid input, ASAN states its main claim: "If approved, this new coding promises to label hundreds of thousands of children with "wandering" diagnoses that would make it easier for school districts and residential facilities to justify restraint and seclusion in the name of treatment." ASAN offers no evidence for this claim and wanders into inflammatory, sensationalized rhetoric. Having looked at the pages (17 and18) that the CDC provides on wandering, I see no evidence to justify the claim that suddenly "hundreds of thousands of children" would get this diagnosis, nor that "school districts and residential facilities" would stick these labels on individuals in order to "justify restraint and seclusion in the name of treatment." The CDC writes that "Wandering places children and adults with ASD/DD or other disorders in harmful and potentially lifethreatening situations—making this an important safety issue for individuals affected, their families and caregivers." It then admits "available data are very limited, the majority of wandering fatalities associated with autism are attributed to drowning." Part of the point in discussing adding a diagnostic criteria of wandering to the ICD-9-CM is to "promote (1) better data collection for and understanding of this behavior (2) prompt important safety discussions between healthcare providers, caregivers, and the person with the disability to the full extent possible. Better data should help to increase awareness and action among first responders, school administrators and residential facility administrators to recognize and understand the wandering and develop proper emergency protocols and response while supporting self-determination principles."
Whether ASAN's officials decided to not believe these goals or to dismiss them out of hand is not clear. The petition follows its main claim with this additional charge: "Furthermore, this diagnosis carries no clear definition and the CDC's proposal uses poor quality research to claim that it should apply to the majority of autistic children and those with other developmental and intellectual disabilities." I'd agree that the two pages offer no operationalized definition of wandering and that it relies on two surveys of parents and caregivers, but the CDC's already admitted the limited data and the need to collect more, which this diagnostic label would provide because it would be an additional diagnostic label that is specific to this behavior. I don't know that the CDC is claiming "it should apply to the majority of autistic children and those with other developmental and intellectual disabilities." If it did, there'd be no need of a label, as this behavior would be written into the ASD and ID diagnostic criteria.
ASAN closes its petition with this call to action: "The CDC's last minute proposal was made public only the day before the public hearing on these coding was scheduled to occur - well after the registration for people to give public comment had closed! Our only chance to have our voices be heard is to flood the written comment session before that deadline passes on April 1st."
I'm all for people having their voices heard, for self-advocacy, and for making sure that the needs and wants of individuals are heard and that the autonomy of the intellectually disabled is respected. I'm not for sensationalized, inflammatory rhetoric that offers no evidence for its claims. ASAN calls for people to "flood the written comment session" telling "the CDC 'No' on Abuse-Enabling 'Wandering' Code!" without offering evidence-based reasons for doing so.
Rather than reacting in a knee-jerk manner, why not approach this from a rational, evidence-based perspective, asking that the CDC operationalize the definition of wandering (which would have to happen for it to become a diagnostic label); conduct better research into the number of individuals in institutions and group homes who wander, and the number of children with ASDs at home who have wandered; and make safeguards to ensure that a diagnostic label of wandering will not result in unnecessary restraint and that individuals' autonomy will be respected?
The letter that will be sent as part of the petition is no better at offering evidence for its claims, although it goes into greater detail about the potential ills that ASAN believes will result from the addition of a wandering diagnostic label. It does so, though, without detailing the risks, offering only a vague "research shows" claim without elaborating on the research. In a letter in which one of the claims is that the CDC is relying on poor quality research, it's a bit of a stretch. The whole thrust of the letter is fallacious slippery slope appeal that does not take into account the actual information provided in the two pages on wandering that is in the CDC document, which is at most a preliminary call to look at the addition of a wandering label.
Unless ASAN is for individuals with severe intellectual impairments not being protected from wandering off into traffic or other dangerous situations?*+
*I can do sensationalized, inflammatory rhetoric, too.
+ I don't believe that ASAN is for that.
Added 11:45
One of the claims is that this came to light only one day before the meeting, but that is also not true: http://edocket.access.gpo.gov/2011/2011-3542.htm [Federal Register: February 16, 2011 (Volume 76, Number 32)]
[Notices] [Page 9018-9019]From the Federal Register Online via GPO Access [wais.access.gpo.gov][DOCID:fr16fe11-57]
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