Outrageous

Imagine you have Diabetes. You were diagnosed a few years ago, after struggling with baffling symptoms for quite some time. After your diagnosis, and treatment, you began to feel much better, and you are so grateful that you were finally able to find out what had been causing you difficulty for such a long time. Now, you work hard to learn more about Diabetes, and to follow your doctor's advice. You stick to your dietary recommendations, you exercise regularly, and, if needed, take the appropriate medications.

You have a doctor's appointment coming up, so you gather your blood sugar data from the past few months, and look forward to going over your case with your doctor. When you meet with her, she tells you, "I have some news for you. You no longer have Diabetes." You are pretty excited, because you think that perhaps your hard work has paid off and you have beaten your blood sugar problems. The doctor goes on to explain, "The medical definition of Diabetes has been redefined. Most people with blood sugar problems still fit that definition, but people like you, who are careful to eat properly, exercise and take their medications, no longer fit into that medical definition. So, according to the new definition, you are no longer Diabetic."

"What does this mean to me, Doctor?" you ask. "Can I stop taking my medication?" "Do I still need to be careful with my diet and exercise, or I am cured of my Diabetes?"

"Well, you still will need medication, and if you aren't careful with your diet and exercise, you will most likely get very, very sick, and could seriously damage your internal organs, so you definitely need to keep up on all those things." But, for medical purposes, you can consider yourself cured of Diabetes, since you no longer meet the medical definition of Diabetes under the new criteria.

"But, I can still see you, and my insurance will still pay for my treatment?"

"No, I am a Diabetes specialist, so you can't see me. You will need to see your General Practioner for treatment, since you don't have a particular disease, just some things that you need to watch. As long as you are careful, you are not that different from typical, non-sick people. And, no, your insurance won't pay for your medication anymore, because it's diabetes medication, and you're not Diabetic. I doubt that it will pay for nutritional counseling either, because you are doing so well."

"But doctor, I only found out about my Diabetes because my son was identified as pre-diabetic. You know, kind of a mild form of diabetes? Will people still be identified as pre-diabetic, and receive help for that? So that, like, future kids and families will get the help they need?"

"No, no, your son had a really mild case. Now, under the new definition, there is really no 'pre-diabetes.' Kids like your son will just have to watch what they eat, and be sure to exercise, and if they get worse, then maybe they will qualify for a diagnosis of Diabetes someday. Then they can get paid-for medical help. I'm not really sure how they will know to watch what they eat, etc. but I'm sure everyone will figure it out. It's always worked out before, right?"

Outrageous? I think we can all agree that simply changing the definition of a medical disorder does not actually take away the difficulties experienced by the person with that disorder. And, hopefully you've figured out that I'm not really talking about Diabetes, I'm talking about Autism.

Whether or not one agrees that the proposed criteria for Autism Spectrum Disorders in the upcoming DSM-5 is a substantial change from the current DSM-IV criteria is immaterial to this discussion. If you're interested in opinions about the content of the DSM-5 criteria, here are a couple of informative writings: Amy Caraballo (The Diagnostic Panic Room) and John Elder Robison (Panic Over Dsm-5 Changes in Autism Diagnosis).

What I want to point out is that it is outrageous that anyone is actually considering that it might be okay to boot people off the autism spectrum. Because that is what I've heard "professionals" spouting in some forums and news programs. That if we can narrow the definition of autism, we can save the money and resources for "the people who really need it." Which, in their way of thinking, would leave the people who have a working program in place out in the cold with no supports. And worse, without any understanding of what makes them different and what might help make things work for them.

That's the attitude I'm outraged about. That anyone would think it might be okay to simply change the definition of disorder to exclude people. That anyone might think that simply because some people have greater needs (in their opinion) it might be okay to deny services to others who (in their opinion) have lesser needs.

I'm not saying the new definition will exclude people. I'm just saying that the unabashed glee of some people who think it will is outrageous.

 

Comments

[Sara McCarter]

wow so well put!