My friend Michelle has a "controversial" post about autism and other "ailments" in our era at her blog. I put controversial in quotes because it got me thinking (it did not get my hair up) hard about how we diagnose children.
There is no doubt, and Michelle agrees with me on this, that Shelby is autistic. But, the sudden uptick over the last few years in diagnoses around the world, begs a lot of questions. Is it genetics? Is it contaminents? Is it vaccines? Is it shellfish, gluten, soy? etc (you get the point.)
One question I HAVE NOT heard asked is the rate of misdiagnosis. I won't google or try to look it up on the internet as the internet is notorious for incorrect information.
In the early and mid 1990's there was a "pandemic" of ADD/ADHD diagnoses. Not surprisingly, a lot of the explanation supporting this surge in diagnoses was similar to that we are seeing in autism including: more girls being diagnosed later in life because of a lack of a behavioral element and a broadening of the definitions and symptoms of the disorder. Don't get me wrong, a lot of kids were helped. But a lot were misdiagnosed too.
Around that time I worked part-time after school and on weekends at a pediatrician's office. The parents who would call in demanding their child had ADD/ADHD were astounding. A lot were parents of kids who were getting B's in school and blamed that on the disorder stating they would get all A's if they were treated with medication. (I grew up in the highly competitive area of North Carolina called the Research Triangle Park which includes some of the highest per capita ratings of PhDs in the world. Grades, education were everything. As was entitlement.) Other times I saw what was clearly a lack of parents properly disciplining children and children knowing they could get away with it. One incident that stands out to me was a story another woman who worked in the office told me about one day. She was in horror after finding out that an acquaintance had obtained ritalin (she believed without a prescription) and was giving it, unchecked, to her two-year-old son. I remember (I was sixteen at the time) blurting out, "What! Every two-year-old has ADHD!" While not technically true, it is true that two-year-olds don't have great attention spans and have enormous energy that can be misinterpreted as hyperactivity (I live with one now, I should know).
The doctors I worked for were wonderful and not prescription-writing happy when it came to ADD/ADHD. They required written documentation from people outside of the family (teachers, pastors, etc). And there were very real cases that came in the door. But the enormity of cases that were clearly not valid and the refusal of some parents to believe that their children could be "cured" without a prescription, was incredible. And to me, criminal. That created the illusion that this was not a real disorder one just made up as an excuse for parents to blame something other than parenting and discipline for children's behavior. It made it harder for the kids who really were suffering from not being able to focus on any one thing for a prolonged period of time or who were in constant motion involuntarily.
And there are those out there, call them conspiracy theorists or whatever, who believe that autism is fake as well. I was in shock when a family member recently suggested to me that Shelby didn't speak, "because she doesn't want to." I don't know this person well (family by marriage) and this person had only met Shelby one time, in a situation in which Shelby was clearly very comfortable. But it opened my eyes to the fact that people will not believe Shelby's disorder is real and severely handicapping for her. And it got me thinking hard.
Autism is a very tricky disorder because it is a "spectrum disorder" meaning that symptoms can vary widely and their severity is wide ranging as well. As a friend of ours with an autistic daughter says, "If you've met one child with autism, you've met one child with autism." Meaning it is nearly impossible to generalize with this disorder. That is very difficult to comprehend. One of the reasons I believe that autism is more widely diagnosed now is that many of the people with it may possibly just have been institutionalized in the past with no diagnosis (and no real course of treatment) or misdiagnosed as mentally retarded. That being said, the very real possibility exists that children and adults are misdiagnosed with autism regularly.
We live in an information-rich world fueled by the internet. If I want to know what Britney Spears ate for lunch, I can find out in a couple of clicks. This, obviously, has pluses and minuses. One huge minus, I found out about first hand, is amateur diagnosis. Members of my family, googling and reading anecdotal evidence/testimony had diagnosed Shelby before her official diagnosis. While in the end they were right, they also had strange demands. Among those was that we get Shelby an MRI scan. I nearly lost it when I heard that. They seemed to believe that "the hicks in North Carolina" didn't know what they were doing in diagnosis and that without an MRI we were being cheated. (Little did they know the leading research in the world is being done not in Boston, NYC, LA or New Haven but right here in Chapel Hill at the University of North Carolina.) I kindly informed them that when a health care professional with a degree and experience in this area suggested we go that route, we would entertain the idea, but, until that point, I was not going to put my daughter under sedation to undergo an MRI to appease them.
How many parents out there are amateur diagnosing their children and trying to demand testing and services? How many parents have a child just little bit slower at making their milestones (but making them) who are convinced and telling anyone who will listen they have an autistic child? Not every child who doesn't make friends easily has Asperger's syndrome. Not every child who has sensory stimuli issues is autistic. One of Shelby's former therapists told me that several children she worked with had sensory processing disorder (which Shelby has) but are not autistic. Dr. Nancy Snyderman, a medical expert for NBC news, has said on the Today show that her son suffers from SPD but did not put an autistic label on him giving credibility to the fact that SPD does not equate with autism. Some children talk late, but are not autistic. Some struggle with fine motor skills, you get the picture. However, the "hysteria" created by the media and celebrities touting one issue over another is enough to drive everyone to suspect he or she has autism to some degree. Even I have thought I might have a high-functioning form of the disorder from time to time. We have been taught that knowledge is power and so we read every baby development book, check out cool websites, and bombard our doctors with questions. And we agonize over every last detail. If "the book" says our child should be standing by six months and little Jack is not standing and is seven months, "OMG, something is wrong!" While vigilance is commendable, there needs to be an intense media circus about the "wide range of normal" too.
In addition to possibly overzealous parents, there is a very large problem in our country that we don't appreciate: doctors cannot keep up with the newest information available. Medicine and science are ever changing and evolving and in this advanced age of digital communication, new information is available worldwide in seconds. My husband attended a seminar for parents, caregivers and therapists where at one point a moderator had to stop people because they were constantly griping about how their doctor must not know anything because he or she had not heard about the newest test or treatment. She pointed out to the group that doctors see hundreds of patients in a week combined with the rate at which new information is available it is impossible for your doctor to know or have heard of every option out there. And doctors are overwhelmed with inaccurate parent reporting of incidences. We have to admit there is a lot of room for error to occur which is why very few general practitioners or pediatricians will diagnose a child outright. Most will do what our pediatrician did and refer the child either to a government agency that provides free testing or a psychologist or non-profit group specializing in testing. But some out there are giving out the diagnosis and perhaps not always correctly.
Remember where I am coming from: I am the mother of an autistic child. I don't want to see any child not get tested who should be. I do not want a child to go without the services they need or are entitled to. I have to wonder though if some diagnoses are off the mark for whatever reason. Will my child ultimately suffer if many children are found to be incorrectly diagnosed? Already one major medical insurer in our state is refusing coverage for therapy (speech and occupational) related to autism by labeling it an "educational issue." Our state legislature is passing legislation fighting that and defining autism as a neurological, and therefore, medical condition to ensure coverage, but what will happen to that law if it is found that many diagnoses were given willy-nilly?
So, is autism the new new ADD/ADHD? I don't know. Only time will tell.
Worth a Thousand Words: Early Saturday Morning
18 hours ago