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Prevalence Rising

  • Posted on April 13, 2012 at 8:00 AM

According to the CDC, 1 in 88 children in the US have been identified with autism spectrum disorder.  These numbers come from 2000 and 2008 (i.e., they’re already old in comparison to some more recent studies using different, more timely methodologies in other locations), and are compared with the 1 in 110 that dates from 1998.  While none of the prevalence estimates I’ve seen have lined up exactly, this trend towards more people with autism (versus less people with autism) seems consistent.

To my knowledge, there’s no one way to account for the increase.  Increased awareness and assessment is certainly part of it.  Parents are able, without as much difficulty, to persevere until they get a diagnosis, which wasn’t always the case.  How much awareness and access to diagnostic assessment impacts these numbers is beyond my skill to deduce, but I doubt it can account for all of it.

Theories to account for this increase have included environmental and other man-made variables, such as vaccine poisoning.  Vaccine theories don’t hold up with the continued increase, however, which suggests a combination of environmental and genetic causes.

In the past, I’ve made it clear (or tried to) that I’m not overly interested in the causes of autism.  This doesn’t change that.  Whatever the cause or causes, my children are who they are, and they deserve to be treated as human beings, and they deserve to be accommodated and accepted as who they are right now.

They are not broken.  They don’t need to be fixed and they certainly don’t deserve to be devalued because they don’t measure up to some misguided perception of normal or perfection.  I know the research into causation will continue.  I know that we will look for the environmental triggers and genetic factors that may align in such a way as to cause autism.  However that manifests, we must not forget that 1 in 88 isn’t just a statistic.  We’re talking about people.

Wandering: A Warning

  • Posted on March 18, 2011 at 4:10 PM

ASAN has issued a warning and a call for action.  You can read a brief overview here if you did not get the message.

ASAN has many valid concerns and complaints about this proposal.  Generalizing any behavioral pattern based on poor research is unwise and irresponsible.  From a social justice perspective, attributing a diagnosis to a group of people for whom the diagnosis is accurate to an unknown percentage of the population is an act of stereotyping, which further demeans a minority group and raises serious doubts about the integrity of the medical community.  Furthermore, “wandering” as a medical diagnosis seems questionable in and of itself.

However, as a parent of three children who have exhibited wandering behaviors, I must also object with the language ASAN used to motivate their supporters.  First and foremost, I think it is inaccurate to assume this diagnosis will “encourage” schools to use restraints and isolation.  These activities do occur and they are dangerous.  They should be stopped.  But they are used by unethical schools and staff for the sake of their own convenience; a diagnosis will not justify the use of these methods to otherwise ethical and caring individuals.  Wandering is a safety risk and schools have a responsibility to address that risk and accommodate children who wander.  All three of my boys have wandered at one point or another, and their schools have addressed those risks and found ways to accommodate them, not with restraints or seclusion, but by ensuring their safety and giving them appropriate opportunities to explore their environments.  Parents and schools share responsibility for formulating an adequate and appropriate plan to address these concerns in a child’s IEP.  I also object to the suggestion that wandering is a reaction to “abusive or sensorily overwhelming environments.”  While this can be the case, wandering is a behavior with many causes.  All the wandering I’ve seen associated with autism has been about curiosity and lack of danger awareness.  Children are curious.  Those who lack danger awareness may seek to satisfy their curiosity in unsafe ways, including wandering.  Associating wandering with abuse is far too reminiscent of the “refrigerator mother” theory and other ways that have been used to suggest poor parenting as the culprit for complex behaviors.  Such a generalization can be just as dangerous as the one ASAN seeks to prevent.

It can take less than 30 seconds for a potential wanderer to get out and away from an unsecure environment.  Hyper-vigilance does not equal safety in such an environment.  Measures need to be taken, but they need to be taken in a respectful manner, i.e. not relying on restraints and seclusion.  Attention should also be paid to the environment itself.  If the environment is uncomfortable, then corrections should be made to that environment.  But caregivers must also be aware of other factors, like curiosity and limited awareness of dangers, when addressing safety concerns for a child who wanders.

Wandering is a real problem, and it can be terrifying.  Some children who wander go missing for days before he or she is found, if he or she is ever found or found alive.  That’s terrifying and harmful for everyone involved.  Even if a child is missing for only a few hours or even a few minutes, it’s terrifying.  Yet it serves no good purpose to turn this challenge into a stereotype.  It’s an individual issue and the solutions are individual and specific.  It is irresponsible for the Centers for Disease Control and Prevention (CDC) to attempt to make wandering—a behavior attributable to many factors—a medical diagnosis.  It is irresponsible for schools and other organizations to use such a diagnosis to justify harmful practices.  It is also irresponsible of ASAN to attempt to motivate their supporters by noting possible worst-case scenarios from a social justice perspective without also noting that there are real concerns about the safety of some individuals with autism.