Since my last entry was a little heavy, I was going to write about something a little lighter. However, there is something that is brewing within the medical community that I believe I need to write about.
Apparently, the medical community needing to justify the expense and time they committed to educating themselves and obtaining their all-powerful MDs, Ph.Ds, Psych.Ds., the need to review and revise the criteria for autism. With all due respect to these individuals, I think the medical community is missing the point.
I thought the medical community took the Hippocratic Oath wherein a physician pledges to Do No Harm. Given the likely effect of this re-definition, harm will be done. Families and individuals that are currently getting services may lose those services that are vital to them. Losing something that is good or valuable seems harmful to me.
Autism Spectrum Disorders. That is the title given by the medical community. If you title a disorder with the word Spectrum in it, you have already decided that there will be a range of individuals that fit within its definition. Does limiting one end of the Autism Spectrum change the fact that the deficiencies that those higher functioning individuals impacted autism affect their daily living? Do we exclude individuals act typical because they aren't atypical enough. Isn't that merely adding insult to injury? Further, if you change the definition as to who fits within this Spectrum, then parents who advocated and worked with therapists and schools as well as acquired the proper technology to give their child every opportunity and tool to be able to communicate and become part of their community have they done so to their detriment. You end up punishing those who put in the work to maximize their child's potential.
E was originally view as having limited mental capabilities. However, Sandi and I and luckily, a psychologist now with the University of Illinois-Chicago, his first grade teacher and instructional aide looked beyond the curtain and saw a child with a quick mathematical mind and wit. Will the fact that Sandi and I have advocated for E to ensure he continues to get the education he is entitled remove him from a Spectrum diagnosis? I doubt and hope not. Given E's other challenges, I suspect he will remain somewhere on the Spectrum.
I have to be honest. I am not sure what the ultimate effect of the criteria change will have on autism numbers. Will it exclude individuals that are currently diagnosed? Do we change the diagnosis of those "on the bubble" individuals that fell into the previous criteria, but are excluded by the new?
Getting back to my original point, does it matter the extent or amount of impact to an individual's peer relationships, inflexible adherence to a routine, or delays in communication or imaginative play? Whether you lose by one or hundred, you've still lost.
Analogy time: If an individual suffers from a physical disability (say, paralysis in both legs) and with therapy and technology and able to walk, does he get a new diagnosis? Without technology and therapy, he can't walk. But from conventional definitions, a person who can walk may not be paralyzed. If a person is unable to communicate, he is then limited in his ability to develop peer relationships. Given that person a device that allows them to communicate, do we now remove that met criteria and say that he is no longer on the Spectrum?
Moreover, developmental and physical disabilities are not diseases. They are disorders. A flu is a disease. A cold is a disease. Remove/destroy the virus living in your body, you no longer have a cold or a flu. Diseases are definitely more black and white.
Second analogy time: If an alcoholic goes through therapy, rehab, a 12 step program and stays sober, society still calls them an alcoholic. They still are have substance addiction disorder. Society applauds their hard work, but doesn't exclude them with through use of a definition. Additionally, if a person with ADD/ADHD takes an appropriate medication thereby alleviating his systems, the diagnosis of their disorder is not changed because they no longer exhibit the symptoms that were the basis of their diagnosis. Such reasoning is circular and invalid.
[SARCASM ALERT]: Thanks, bulk of the medical community for being so understanding and following the Hippocratic Oath.
Thanks for reading; more to come.
[Sorry for the rant]
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