Friday, June 3, 2011

Do We Have to Call Everybody George?

For the most part, you name a problem in order to get help. After all, if you don’t need help with it, why name it at all?

I don’t need a diagnosis of “Forceful Personality Disorder” if my assertive qualities are something that make me different or unique. But I do need a diagnosis if my assertiveness is impairing my life and my ability to function. In that case, having a diagnosis can help me to get medical or psychological treatment. And it might help the people who know me make allowances when I am a pushy bitch.

In the medical world, what you call it impacts how it is treated, of course. You don’t cast a painful leg that is affected by arthritis, but you do cast one that is painful because it is broken.

But what happens when diagnosis words get amorphous and elastic? When the words applied mean something different to each person who hears them? The answer is that treatment becomes fragmented and overly affected by opinion. Public response becomes not accommodation, but confusion.

Take Diabetes, for example. A person who has Diabetes may have Type 1 or Type 2. In the majority of cases (but not all), Type 2 is a condition that is affected by and can even be induced by lifestyle factors. Improved diet and regular exercise make a huge difference in outcome. It is a disease that may have genetic components, but it also involves self-determination.

Type 1 on the other hand, is an autoimmune disease characterized by a complete shutdown of the body’s pancreas. Things like diet and exercise play no role in its onset and are only variables in its treatment.

But we call both of these conditions Diabetes because when reduced, both are related to the way a body uses insulin. In Type 2, insulin is used ineffectively and may need to be supplemented. In Type 1, insulin is not present and must be externally administered every day.

People with Type 1 endure constant misunderstandings that go along with media attention to and prevalence of Type 2. They are questioned about their diet and they endure a variety of attitudes that are tinged with “if only you had taken better care of yourself or your Momma fed you right.”

Some Diabetics believe there should be a different name for Type 1 because the confusion causes unnecessary bias and hurt. But it won’t happen. For one thing, it’s easier to raise money for a disease that affects more people. The bigger the affected pool, the bigger the footprint in public consciousness when it comes to searching for treatments and a cure.

How about Autism? (Ah, you knew I was going to go there, right?) If you have a disorder that impairs your ability to get along well with others and read social cues, you are said to have an Autism Spectrum Disorder. (And soon the term “Aspergers,” which has been the term for a unique and milder form of the disorder, will be stricken from the DSM.) So highly verbal, sometimes hyper-intelligent and quirky sorts of people will be labeled with the same disorder as (for example) a child who is cognitively delayed but can speak and go to school with one-on-one support. And both of those kids are given with the same diagnosis as the child or adult who is unable to speak, in diapers, inclined to hurt himself or others, unaware of safety concerns, and in need of long-term assistive care. There are no accepted terms to distinguish the degrees. 

The answer to the question of how this can be is: “It’s a spectrum.” But that fails to convince. Because quite simply, human society does not apply labels with the kind of elasticity this requires. The community is misunderstanding its own members, failing in advocacy efforts, and even failing in respectful discourse. The medical world is poorly diagnosing and even making up new names of their own (haven’t we all heard the term “HFA” or high-functioning autism overused in attempts to create distinction?) And the public is just plain confused about what it means when someone says a person has autism. This all happens because the right terminology doesn’t exist.

Is it healthy for a person who has what amounts to a learning disability to be given the same diagnosis as a person who has a pervasive, life-altering disability? The outcome of giving the same name to such vastly different problems is that both suffer for it. The person struggling under the dimensions of a disorder that affects but does not greatly impair has trouble achieving appropriately-sized accommodations. And the child or adult who needs more than accommodation, who needs care, struggles to get that too.

When a disease or disorder is progressive, the spectrum concept can be effective. Each stage may be different, but one leads to another. But autism does not have stages that lead to each other, quite the opposite. A person who is mildly affected becomes better and better able to handle the issues with maturity. And while a more seriously affected person will also progress, often new issues emerge with maturity to complicate. So the gap widens.

But as with the two distinct forms of Diabetes, with Autism, all must fly under the same flag, and for some of the same reasons. The larger the size of the affected group, the more priority it can receive. New names mean smaller buckets, smaller buckets mean less money. 

What is in a name? Plenty. If only we had them. As it stands, we are like George Foreman’s family. Every child is named George and when you intend to call out one in particular, everyone jumps.



2 comments:

  1. Congrats, great article! I would like to add that something similar happens to ABA therapy (Applied Behaviour Analysis) . Long story short...If you submit your kid under ABA Therapy for any kind of developmental needs, (what is a great resource in many cases, even if you do not have a diagnose of autism), your kid becomes automatically (labeled) autistic forever. Maybe it is like Abraham Maslow said in 1966, "I suppose it is tempting, if the only tool you have is a hammer, to treat everything as if it were a nail."

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