I feel stuck, stuck in the continued reflection of what DSM labels mean to individuals and how they conceive their identities. Perhaps this is because so much of what I read on the internet in our online community is about identity and labels. It seems many of us are focused on what it means to be autistic and who controls the right to label and define.
I was going to say that nowhere else in the medical community do you see this war between patients and professionals, but that is not true. Take Morgellons. Please. But it's not just new, unexplained syndromes being bandied about in forums, on blogs, and on facebook; people are desperate for answers and the need to explain any and all symptoms: celiac, chronic lyme disease, PANDAS, and more; they all offer a comforting, clear explanation for the aches, pains, and discomfort that are a common and often unavoidable part of being a living organism with the endless potential for things to go awry.
Never fear, though. There's always something that can be done, whether it really works or not. There's no shortage of entrepreneurs looking to make a living pandering to an often gullible population. Magnetic bracelets, holographic bracelets, salt crystal lamps, healing energy, quantum healing and more: there is an ever increasing diversity of woo being offered and even mainstream medical establishments, ever interested in making a buck, are jumping on the bandwagon. After all, giving the consumer what he or she wants is the smart business thing to do. Never mind the ethical conundrums of doing no harm.
Doing no harm. The problem with labels, especially those dealing with the mind, is the power that goes with whoever is in control of labeling, and with that power is the ability to cause significant harm. It's easy to see why consumers are trying to take control of the ability to label themselves and then redefine those labels into positives, as is happening in the autism community. Being viewed as defective, broken, and in need of repair is not an easy label to bear. Being treated by inept professionals who often do more harm than good makes the situation all the worse. A revolution was and is inevitable. I'm not convinced there will be any winners, though.
The problem with co-opting the labels created by the psychiatric community and then redefining the labels to suit one's own need to establish a clear identity so that one can ideally find other like-minded individuals is that cacophony is an inevitable result. Multiple people using the same terminologies with different definitions means that cross-talk is the end result. Fragmentation occurs as everyone creates and uses his own personal meanings for the same labels.
No one's talking about the same thing, and since everyone has his own definition and is his own expert on the label, everyone else is a charlatan and the enemy. The fallacy of false dilemmas appears to be one of humanity's favorites.
In our community that means that parents insist that their children's autism is nothing like self-advocates' autism, and self-advocates and parents alike berate professionals who claim expertise of autism.
While there's no shortage of quacks, charlatans, and hucksters in our community, it gets increasingly hard to sort out who is genuine and who is a fraud. How, when everyone is using his own definition, do you even know?
In the end, what I come back to is what is the benefit of engaging in self-labeling. Finding community and support and acceptance are important tasks: we all need a place to belong, and we often find that place by defining the out-group and common enemies. Nowhere is this more evident than in the autism community where the autism "experts" like Baron-Cohen, Attwood, Siegel, and more are often reviled for their takes on autism. Both parents and individuals on the spectrum take often rightful offense at the ways in which these experts choose to identify and sometimes mock autism.
Deficit models don't work well for adaptive functioning, and that's what the DSM does: it labels people outside the range of normality by deficiencies, not strengths. And this is where the greatest danger is: in identifying oneself by deficit models.
In order to gain some measure of control, parents and self-advocates are trying to wrest the control of labeling away from those who view neurological differences in terms of deficits. Self-esteem and self-efficacy for the individuals so labeled almost demand a rejection of the label as a list of deficiencies and the rewriting of the label into a positive personality type.
As long as we exist within the label and give the label legitimacy, there's not much choice: see it as a negative or rewrite it as a positive. Stepping away from the label entirely means letting go of built in communities created by the use of the label. It's stepping into no-man's land, and it's often a terrifying prospect.
More of us in the community are doing that, though: suggesting that what is important is not the label, but the characteristics that are in common. We may have an intense, innate need to name things, but we can resist that need to break everything and everyone down to labels. It is only by seeing our common characteristics, our humanity, that we will ever have any hope of finding community over the cacophony that labeling creates.
Labels do not define me or my husband and they do not define our children. We are individuals with our own strengths and challenges, and appreciating our commonalities and our differences provides a safe space where being uniquely ourselves is not only possible, but expected.