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Ignorance--the new "black"--edited
- Nov 26, 2008 at 10:33 AM
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- Comments (65) Total Views (1678) Everyone can see this journal post.
Recently I read and responded to two posts about ADD, ADHD and Autism. In both cases, my responses were deleted, as were those of other mothers who challenged the premise of their posts. In these journals, the authors suggested that these disorders are the "fashionable" new diagnoses and that parents are seeking them for their children in droves for various reasons. Evidently they think that parents want to get their children diagnosed either to abscond from responsibility, to gain sympathy, or to get some really great drugs for their children. I think these women have been strongly influenced by the likes of Michael Savage and Dennis Leary, both of whom have riled Autism associations around the country with their incredible insight and thoughtfulness on these topics, and said very similar things.
Understand that these two women have no background in Early Childhood Development, no medical background, no hint of any higher-education studies in neurological or any other disorders (nor do Savage or Leary, for the record). They are basing their assumptions on casual "observation" and vague associations with a tiny number of people who are severely affected by these disorders. They have not studied these disorders, but observed children whose parents have claimed are affected by ADD, ADHD or Autism, and decided that, after watching them on the playground (I assume) that these children are perfectly normal. They feel that it is within their power and rights to make these assumptions and to spread the message that children are being mis- or over- diagnosed with these disorders. They offered some great advice, too. "Let kids be kids". Powerful.
One argued that in diagnosing children who tend to be more solitary in their play or have speech delays will only prevent them from developing their own personalities, and that their creative tendencies will be squashed by intervention. Right there is proof of ignorance. With all of the evidence of the power of early intervention, and the importance of recognizing delays as soon as possible, this mother had the audacity to suggest that parents ignore warning signs in hopes of having a budding Picasso or Einstein. While there is no evidence to support that Einstein's brilliance would have been diminished if he had had Speech Therapy, there is plenty of evidence to support providing speech therapies when a child is showing delays. Adults who have a disorder such as ADD, ADHD or ASD report having suffered feelings of isolation and rejection as children, because they didn't understand their differences, and didn't have skills to help them communicate. This is not about making children conform to some mold or subjective standard. This is about recognizing delays and giving children necessary tools to help them navigate their worlds.
Both of these women also implied that getting a diagnosis is easy and desirable. I had given my story in both journals to correct this, and in both cases my responses were deleted. So I will offer it again in a place where those two brilliant minds have no control over the "delete" option.
My daughter was (and is) a happy child, prone to infectious laughter and bright smiles. She played by herself, and since my first daughter tended toward the clingy side, I admit I felt a bit of relief at her apparent independence. She hit the developmental milestones, but at the latest point before literature recommended any action. She wasn't speaking, but since she has a very verbal older sister, I didn't worry since conventional wisdom said that this was common in younger siblings. So, her delays were not so obvious that we were ever alarmed, but we were becoming increasingly concerned as she grew, but still wasn't "catching up". At 2 1/2 she was hospitalized for dehydration after suffering a stomach virus. While we were in the hospital, her pediatrician used that opportunity to broach the subject of genetic testing to see if there were any genetic causes for her delays. I agreed to it, and while they were drawing my daughter's blood for the tests, the doctor also gave me information for early intervention services.
Those tests came back negative for any of the commonly known genetic disorders. We started getting early intervention services--speech and occupational therapy, and decided to have her tested for autism. These evaluations began in June and ended in July--several weeks of testing done by various professionals--a speech pathologist, occupational therapist, physical therapist, psychologist, psychiatrist and a developmental pediatrician. They met after their evaluations and discussed their findings. They concluded, beyond any doubt, that my daughter has autism. With that diagnosis, we were able to enroll her in a preschool that has a 50/50 mix of children with various disabilities and disorders and an equal number of "peer" children--those who are neurotypical (NT). At her school, she still gets speech therapy and occupational therapy as well as regular classroom instruction with some adaptations to her routine. She does not take medication for autism (to my knowledge--and I have done a lot of research--there is no medication for ASD, other than to treat some related symptoms like anxiety or OCD) but does take anti-convulsants for a seizure disorder. Interestingly, while she was being tested for a seizure disorder, she had an MRI done, which did show on the brain scan a telltale difference in her brain that is associated with autism.
So, for those who do not understand this, autism is a neurological disorder. It is also a spectrum disorder, hence the term Autism Spectrum Disorder. That means that people with autism will not all act the same way, or be affected by autism in the same way or to the same degree. Those who are not very familiar with the disorder may think of Rainman when they think of autism. They may assume that all people with autism are savants, or spend their time rocking back and forth or engage in seemingly self-destructive behavior such as head-banging. Those people would look at my child and, perhaps, assume that there is nothing wrong with her--if they were casually watching her play on the playground, for example. She runs, slides, swings, jumps and laughs. That looks perfectly normal. It takes more than a snapshot of such a brief moment in time to make a judgement--especially if the observer is unqualified to make one. They would most likely miss the sensory issues that affect her, miss the fact that she has limited expressive and receptive language skills, miss the fact that, at nearly five years old, she doesn't "get" how to play with other kids, although it is clear that she wants to. They would miss the fact that we don't have conversations of any sort. It was a big accomplishment to reach the point where she is able to make simple requests like "want raisins" or "go outside". But she cannot answer a simple question like "how was your day?" or "what did you do in school today?"or even "what is your name?"
To sum up, ASD is not an easy disorder to diagnose. You can't go to WalMart to purchase a diagnosis. They don't come free when you open a checking account. A doctor can't write some sort of prescription for it. It is a medical diagnosis, as it is a neurological condition. The differences between an autistic brain and a NT brain can be seen on a brain scan. It is a very real disorder that affects an increasing number of children. It is not something made up to benefit the pharmaceutical companies--as I said before, there are no medications to treat it. It is a serious disorder, and not a diagnosis that parents desire, except to get their children necessary services. There is nothing to be gained by an unnecessary diagnosis. It doesn't make you or your child popular. It doesn't give instant understanding or support when your child is suffering sensory overload in the grocery store. There are no monetary benefits. It can be very isolating and frustrating.
I would not give up my daughter for anything in the universe, but I do wish I could get rid of a disorder that might negatively affect her ability to be independent when she is an adult. I don't know, yet, what the future will bring for her. I will continue to do all I can to help her in her development, to help her learn the skills that she needs, and will always be grateful that there were early intervention services available to start the process as early as possible.
So to the mom who warned us not to read her post if we are easily offended: I am not among that population. I was able to read your post without feeling offended. But you made some pretty strong claims that could be detrimental to parents of young children, and I felt it necessary to correct those. By discouraging evaluation of developmental delays (including speech), you could be preventing children from getting necessary therapies that would help them cope with having a disorder.
To the mom who claimed that Autism is the "new black", I say this: Perhaps it's not Autism that is the "new black" but it's making uneducated claims about the diagnosis that is the latest fashion. Perhaps Ignorance is the "new black".
One final note: I focused on autism in my journal because that is where my personal experience lies. I would encourage mothers who are or have children affected by ADD or ADHD to respond with their stories, to correct the erroneous assumptions made about these disorders.
Okay, so that wasn't the final final note. This is. Below is the link to a journal posted by another fabulous mom whose son has ADHD. She offers a perspective from that diagnosis so I encourage you to read her journal as well.
http://www.cafemom.com/journals/read/1310757/My_son_s_voice_will_NOT_be_silenced
Comments:
Voting up!
Just because some kids do have autism, doesn't mean others aren't given convenience diagnoses. If you'd heard Leary's entire story instead of the little snippet taken out of context by the paper, you'd know his outrage is about these designer diagnoses taking funding and resources away from kids who really do have autism and need the help.
Another mom I know took her son for testing at the recommendation of a friend. The doctor gave her a diagnosis of autism because her son was uncooperative and basically chose answer A on all of the multiple choice tests he was given. She got a second opinion, and the second doctor was outraged at what the first had done. If she had taken the first doctor at her word, her son would be one of those kids taking resources away from your child who has real problems and needs the help. Where's the good in that?
NotPanicking , noone is saying that all doctors are good doctors. There are those that do right by their patients. Then, there are those that are looking to make a quick buck at the patient's expense.
That goes for any field within medicine. Not just mental health professionals.
. In these journals, the authors suggested that these disorders are the "fashionable" new diagnoses and that parents are seeking them for their children in droves for various reasons. Evidently they think that parents want to get their children diagnosed either to abscond from responsibility, to gain sympathy, or to get some really great drugs for their children
Are those people on crack? Do they not understand the symptoms behind ADD,/ADHD, and Autism and also realize they while possibly sharing some symptoms or behavioral patterns, are 2 very different disorders? What brainless twit compared it to being "fashionable"?
I know the post you are talking about, I was deleted as well.
I believe that if you have no personal experience, no credentials, you really have no room to speak. Period.
It is so hard to find help for kids who have autism. I have been fighting for years to get my son the help he needs. If it is so easy to get a "designer diagnosis" Please...tell me, where the hell do I do that? Then maybe all these years of fighting, backwards steps, red tape, no support, stupid people, watching my son slip through every damn crack there is, might make me feel a little better.
And for those of you who are wondering, no, my son has not been diagnosed with autism. Want to know why? Because there is no dr. in our area that can help. I have been on a year long waiting list for a clinic in Seattle. A 2 hour drive from my house.
ARGH!
I also agree that some people are looking for diagnosis just to cop out of their parenting skills. Its takes work to understand child development. I've even seen some women expect mental diagnosis for food allergies and apparently are looking for "fashionable" diagnosis instead of stepping up as a parent and meet the needs of their children. Diagnosis is better than the parenting work it takes I guess, so sad.
True, some kids do receive improper diagnoses. Those cases are not as rampant as some would have us believe. That, also, is not what I was arguing. The posts to which I had responded were suggesting that parents were seeking a diagnosis for the mere fashion of it. When qualified professionals are saying that many children are receiving improper diagnoses, then I will believe that there is a greater problem. When people like Michael Savage (whom I admit I can't stand) and Dennis Leary (whom I find to be quite funny) are making these claims, I have to wonder on what do they base their statements? How are they in any way qualified? Because one had a brother who had a disability, and the other knows a couple of children with autism, that makes them qualified to make these bold and brash statements?
BTW--while I did not read Leary's book, I did watch his interviews where he explained his position. I understand that a small part of his book was taken out of context. I heard his claim that he is an advocate for those who truly have autism. That does not diminish my point. He is not an autism expert. And I do take issue with autism being called a "designer diagnosis". Any parent who has a child with autism knows that there is nothing fashionable about it. It can no more be called a "designer diagnosis" than can childhood leukemia or smallpox.
The danger I find is not that a small number of children who do not have ASD will receive that diagnosis. In most cases, it takes a great deal of time and testing to make that diagnosis, and it is irresponsible of anyone to make such a diagnosis too rashly. That is an issue to be taken up with the medical community. However, services for autism tend toward therapy services. A child who does not need speech therapy will be quickly identified, as will one who does not need occupational or physical therapies. I am not afraid that a few will slip through the cracks and make my daughter's services unavailable. Her needs are very real and easily identified by qualified professionals. And her needs are constantly being reevaluated. The real danger is that children in need of services will slip through the cracks because parents will be afraid of having them evaluated--fearing the stigma of seeking a "designer diagnosis", or the perception that they are greedy or inept parents.
So, yes, there will occasionally be a child who gets a diagnosis who doesn't need one. It was wise of your friend to seek a second opinion. However, to discourage parents from seeking an evaluation when their children are showing developmental delays is very harmful. Early intervention is so important to helping these children at a point when there brains are more malleable and still developing. There is no harm in evaluating a child for developmental delays. There can be great harm in ignoring warning signs because what is a serious disorder has suddenly become something so trite to those unaffected by for it to be called a "designer diagnosis".
Ok, after laughing really long and hard at someone who thinks that ADHD doesn't exist...here's my retort...
Come get my oldest son. He's 14 and he was diagnosed ADHD when he was 4...when he was 12, they added a bi-polar diagnosis as well. We started ADHD medication when he was 7...mood stablilizer when he was 12. I will gladly pack all his things...EXCEPT HIS MEDS...and you are welcome to take him home for a week...no, a month. You may then be the proper parent that you think I am not and when you bring him back, I expect him to be CURED of whatever is ailing him. My son is an insomniac who doesn't sleep, he's very active and impulsive, he's destructive and his moods can shift from happy to sad to depressed to elated to frustrated...all in the span of 2 minutes. His has loud outbursts so often that all the yelling and screaming he has done has caused nodules on his vocal cords. He can stay awake for days and days. He loses things and is very unorganized and sloppy. He also has little to no short term memory so you will be repeating yourself a lot. He cannot focus or pay attention so be prepared to guide him back to task quite often. Pile all that on top of his tendency to lie and his outright defiance and you get a kid with a big problem. Of course, when he's on his meds, he is easier to deal with...but, the person who thinks I've labeled him ADHD because I'm lazy is the perfect parent and should have no trouble straightening him out for me, right? So, when should I have him ready?
My brother has ADHD and it was NOT pretty when he didn't take his meds.
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Voted up. :)
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