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Location: Toronto, Ontario, Canada

Writer/Curator/Founder of The Autism Acceptance Project. Contributing Author to Between Interruptions: Thirty Women Tell the Truth About Motherhood, and Concepts of Normality by Wendy Lawson, and soon to be published Gravity Pulls You In. Writing my own book. Lecturer on autism and the media and parenting. Current graduate student Critical Disability Studies and most importantly, mother of Adam -- a new and emerging writer.

“There is no hope unmingled with fear, and no fear unmingled with hope.” -- Baruch Spinoza

Tuesday, January 02, 2007

 

Disease: The New "Normal?"

I have been in Miami this past week -- Adam enjoying the sun and beach. He listens, expresses himself just fine. I watch in this atmosphere with a sense of relief at how relaxed we all are. It is a far cry from those early first months of initial diagnosis.

Yet, there is something else here amongst the crowd of retired snow birds: it is a little pain here, a little pill there. Or perhaps, it is a story I hear, among many, a grandchild with some kind of diagnosis -- from autism to ADHD and many other childhood "disorders." I know there is a great deal of contention over this issue: is autism just better diagnosis (or more liberal diagnosis in order to get some kind of subsidized service), or is it a combination of environmental and genetic factors?

While we continue to turn to science to find the answers to our hovering questions, I have to ask, where do studies in social evolution come into play in our discussions in how we influence science? From bias, to flat-out prejudice, to financial opportunity, how much do WE influence the understanding about not only autism, but about what it means to be human? For those of you who read my blog, you know my view is that we influence everything that has to do with our views of autism and the direction of scientific research.

I have a healthy skepticism about our medical system: I do with the information what I want and I don't trust doctors very much. You go in with a complaint and expect to be medicated, or at least offered a prescription. So it was interesting for me to read this article in the New York Times this morning: What's Making Us Sick Is An Epidemic of Diagnosis:

"Americans are living longer than ever, yet more of us are told we are sick. How can this be? One reason is that we devote more resources to medical care than any other country. Some of this investment is productive, curing disease and alleviating suffering. But it also leads to more diagnosis, a trend that has become an epidemic.

This epidemic is a threat to your health. It has two distinct sources. One is the medicalization of everyday life. Most of us experience physical or emotional sensations we don't like, and in the past, this was considered part of life. Increasingly, however, such sensations are considered symptoms of disease. Everyday experiences like insomnia, sadness, twitchy legs, and impaired sex drive now become diagnosis: sleep disorder, depression, restless leg syndrome, and sexual dysfunction.

Perhaps most worrisome is the medicalization of childhood. If children cough after exercising, they have asthma; if they have trouble reading, they are dyslexic; if they are unhappy, they are depressed; and if they alternate between unhappiness and liveliness, they have bipolar disorder. While these diagnoses may benefit the few with severe symptoms, one has to wonder about the effect on the many whose symptoms are mild, interrmittent or transient.

The other source is the drive to find disease early....

Most of us assume that all this additional diagnosis can only be beneficial. And some of it is. But at the extreme, the logic of early detection is absurd. If more than half of us are sick, what does it mean to be normal? Many more of us harbour "pre-disease" than will ever get disease, and all of us are "at risk." The medicalization of everyday life is no less problematic. Exactly what are we doing to our children when 40 per cent of summer campers are on one or more chronic prescription medications?

No one should take the process of making people into patients lightly. There are real drawbacks. Simply labeling people as diseased can make them feel anxious and vulnerable -- particularly children.

But the real problem with the epidemic of diagnosis is that it leads to an epidemic of treatments. Not all treatments have important benefits, but almost all can have harms. Sometimes the harms are known, but often the harms of new therapies take years to emerge -- after many have been exposed. For the severely ill, these harms generally pale relative to the potential benefits. But for those experiencing mild symptoms, the harms become much more relevant. And for the many labeled as having predisease, or as being "at risk" but destined to remain healthy, treatment can only cause harm.

The epidemic of diagnosis has many causes. More diagnoses mean more money for drug manufacturers, hospitals, physicians and disease advocacy groups. Researchers, and even the disease-based organization of the National Institutes of Health, secure their stature (and financing) by promoting the detection of "their" disease. Medico-legal concerns also drive the epidemic. While failing to make a diagnosis can result in lawsuits, there are no corresponding penalties for overdiagnosis. Thus, the path of least resistance for clinicians is to diagnose liberally -- even when we wonder if doing so really helps our patients." (Essay by H. Gilbert Welch, Lisa Schwartz and Steven Woloshin, NYT, Health & Fitness, January 2, 2007, p. D5).

We know we have an epidemic of autism diagnosis. I am wondering if, with the help of others, we might calculate the income of this "autism economy" to see just how much others are profitting from pathologizing our children. I look back and consider the autism diagnosis, how it made me look at every one of Adam's behaviours as being the result of autism, and today, I laugh. Adam is a healty 4 1/2 year old who is still not fully verbal, but otherwise a normal kid. When he gets upset, it is because maybe he wants something, maybe he's naturally upset or sad, maybe he's learning to cope with all of those big emotions in his tiny body that we learn to manage (or not) with maturity, or maybe he's just plain tired and has reached his limit. Surely, autism has its set of challenges for both a parent and a child, and each of us as parents, are dealing with a slightly different set of challenges for each of our children. Surely, we musn't ignore what it takes to accomodate our children to enable them to communicate, learn to socialize, or whatever needs to be addressed. The bulk of the responsibility to accomodate, seems to lie with parents and educators, for I have not seen or experienced any medical professional yet who has done anything to de-stigmatize or accomodate our kids. I can teach Adam to communicate using a computer. He can show me how much he knows (and I am continually floored at how much he knows and understands when he using educational programs) on the computer. He can learn how to use a program, a new mouse, faster than many an adult. As his parent, I can figure out how he learns with fill-in-the-blank sentences. I can "backward chain" a sentence until he says it fully by himself. It is a process of learning that I can figure out with him. It takes my time, my patience, and my utter faith in his intelligence and ability.

Two nights ago, Adam said on his own "I love you mommy," (more like I wa you mummy). Quickly after, he went back to splashing water in the tub with his throaty little bird sounds. Among the many other sentences he works so hard to utter independently, it goes to show that the teaching, the exposure to many words and sentences, the reading, the computer programs the "text-rich environment" that we provide for him, may be working.

I am about to go into knee surgery on Thursday. Apparently I "have arthritis" in my knee that I've suffered four dance and ski injuries. I've gained some weight because I haven't been running this year (I've lost some since those news clips you might have seen). For years, I've been avoiding surgery to correct my patella that initally popped out for the first time dancing at age fourteen. On the eve of my 42nd birthday, coming up in March, I decided that the constant swelling and limitation in my physical activities warranted surgery. My first surgery. My first general anaesthesia. My first "letting-go" to a medical professional. May he be good to me!

Sometimes we need to let go, but not without a fight when it comes to decisions about health and our own well-being. We need to resist all attempts to limit life, to categorize it, and ultimately in autism, to limit the many opportunities that all our children rightfully deserve.

8 Comments:

Blogger Kristina Chew said...

I do think there is an "epidemic of diagnoses" and, indeed, also an epidemic of treatments (causing an epidemic of parental wallets being drained, too). I think, too, that we can talk about this "epidemic of diagnoses" as something of a positive sign, in that it is in part happening because we have a better understanding of what autism is, and we are (very very slowly) becoming more accepting of the diversity that is neurodiversity.

Hope the surgery goes all right---both of my in-laws had knee surgery at the beginning of last year and it has been a long process (of course, they are not at all fit).

Happy New Year and always good to hear about how Adam is doing.

12:03 PM  
Anonymous Bonnie Ventura said...

I was watching football with my husband on Sunday, and one thing that struck me was how many of the commercials were for medications. They still had some ads for beer and cars, but I saw so many commercials for new drugs to treat prostate enlargement, erectile dysfunction, high cholesterol, etc., that I wondered out loud if all the young men had stopped watching football.

My husband said no, there's just more profit to be made by getting people on maintenance meds than by selling them beer.

Happy New Year, and I hope all goes well with your knee.

5:44 PM  
Blogger Stephanie said...

This is a very intriguing look at the diagnostic epidemic. I like to think/hope that if enough "mild" people get such diagnoses we can utilize this trend as a means to get the stigma taken off those individuals who are not "mild." The more people see "normal" people with diagnoses, the more they'll find these diagnoses to be acceptable, and perhaps open their hearts to those who are more pronounced in their symptoms.

Though, in the case of autism, I find it very interesting that the diagnosis of autism is based on a series of behavioral traits, and thus open to subjective interpretation. I wonder if there are any physiological markers, and if there are such markers if all people with "autism" will be found to be as similar as the medical community tends to assume they are...and perhaps there are no markers, no cues at all, and thus the differences are less corporeal and more perceptive.

And, perhaps, if we raise enough questions less money will be funneled towards the search for a cure, and more will be spent on the search for understanding.

8:12 PM  
Blogger Julia said...

Good luck with your surgery!

I had my first surgery under general anesthesia in September, and it went fine.

And I think we have been overdiagnosed here -- my older son is definitely autistic, no one is going to argue with that. His younger sister has a "mild to moderate" autism diagnosis -- from the school district, basically. I think that's accurate. But her twin brother has also been given the same diagnosis, again from someone employed by the school district, and I think that in his case, it's not accurate. He is benefitting from the services the district is providing based on the diagnosis (just getting him out of the house and with children who aren't autistic isn't a bad thing, IMO), but I think he's one of the "overdiagnosed". And I have mixed feelings about that -- on the one hand, he IS getting what he needs for his speech delay, but on the other hand, it's probably a misdiagnosis.

9:03 PM  
Anonymous Ms. Clark said...

I hope your surgery goes well. Thanks for posting the NYT article.

3:07 AM  
Blogger SquareGirl said...

My sincerest positive thoughts and energy are going out to you and I hope and expect a speedy and painless recovery for you Estee!

1:28 AM  
Anonymous Anonymous said...

Sorry about the surgery - but you only have yourself to blame doing all that skiing, dancing, running around energetic healthy kind of stuff [makes your legs shorter too!]

As for the over diagnoses / epidemic controversy, I did read that many of the new 'social disorders' are more exploitable, financially, for the pharmaceutical companies rather than other beneficial but expensive research.
Cheers

3:43 PM  
Blogger marvin said...

Good Night Sleep

Lack of sleep can result in stress, lack of concentration, moodiness, memory loss, lower motivation and fatigue. It is important to get a good night sleep otherwise it may lead to different sleep disorders. More than eighty percent of people suffering from depression are suffering with sleep problems.

At present, one of the most common problems is Sleep deprivation. In fact the Better Sleep Council surveyed a thousand adult respondents and discovered that more than 30% of them confessed to not getting enough sleep each night.

Here are 101 ways to get good night sleep for those who experience difficulty in getting sleep.

http://www.sleepdisordersguide.com/blog/good-night-sleep-101-ways/

4:45 AM  

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