Our natural tendency is to define things based on our personal experience. Even parents who argue they don't define their children by their autism will have the same tendency to define all symptoms and issues their children have as part of their autism. It's Gregory House writ small: the need to find one cause for all symptoms. The reality is that there are often multiple causes for the myriad of symptoms we may experience.
Coupled with this natural tendency to see the world as being nothing more than our own back yard is our tendency to believe that our experience of the world is the right, normative way to see the world. If other people have a different view, they must be wrong. Add in confirmation and disconfirmation biases and you've got a potent recipe for seeing the world through some seriously tinted glasses.
We are a culture of people who don't like to read the instructions on anything. We're almost always in too much of a rush to read them twice just to make sure if we do bother to read them at all.
The problem with syndromes with no known causes, with clusters of symptoms that taken together are said to be promlematic, is that there isn't particularly solid ground from the beginning. It's all in how the definition is drawn.
We all, in the autism community, walk around thinking we know autism when we see it, but there's no consensus, and so there are arguments about who has it and who doesn't, what all is involved with it. You have a loud segment insistent that it's vaccine damage and is a gastrointestinal disorder, although there's no logical reason to believe in a leaky gut syndrome or an illusive autistic enterocolitis, nor any mainstream research to back it up. In fact, if one finds research discussing this idea, it's a safe bet Wakefield is somewhere in the background.
It's easy for parents whose kids have both autism and gastrointestinal issues to lump the two, to see that their child functions better when he's in less pain, but to argue that for their child severe constipation or diarrhea leads to autism, but when they experience bouts of it themselves they don't lose their own ability to communicate, understand social situations or engage in repetitive, stereotyped behaviors, is to make illusory correlations. The child's autism undoubtedly plays a large role in how he communicates his distress; it is, after all, a disorder of communication and socialization combined with restricted repetitive behaviors.
We all go beyond the narrow descriptors in the DSM when talking about attributes of the autistic mind, but we have to be willing to acknowledge that we are doing so. By widening the diagnostic criteria, by not making all key symptoms requirements in order to be diagnosed with the condition, how autism looks has changed and broadened. My three children are all recognizably on the spectrum but they are vastly different in how they present, in what issues they have, and in the severity of those issues.
This variance in how we all define autism, in how we go beyond the accepted, scientifically researched criteria for what autism is and isn't, is a problem that isn't going to go away. The public's co-opting of medical disorders and their desire to use them as labels of personality and to redefine them as preferred ways of being in addition to examples of their own personal dysfunctions for the gain of having a ready excuse makes for a minefield when it comes to communicating about very real issues. To deny that reality is to remain forever lost in one's own backyard.
It isn't just autism where this is happening. Other disorders, such as obsessive compulsive disorder, depression, post traumatic stress disorder, dissociative identity disorder, attention deficit disorder, bipolar disorder, and others have taken up residence in our common vernacular, have become a shorthand for people in describing themselves.
What we do with this phenomenon is a difficult question. Scientists operationalize their definitions, make sure that other scientists can be sure of what they meant by the definition. That's only as good as people's ability to read the definition, though, and apply it. And this is not something we do well. Anytime I write about facilitated communication, it becomes abundantly clear when a reader has ignored that operationalization in favor of his own definition, just as it's abundantly clear when it's a true FC supporter ignoring the body of scientific evidence in order to maintain their personal belief system.
As long as we restrict our view to our own backyard and fail to look at how other people are defining words and concepts and using them, we are engaging in a spectacular failure of theory of mind, not something, by the way, that's a uniquely autistic quality. We all have failures in theory of mind, some more spectacular and comprehensive than others. Go to a school parking lot at drop off and pick up time and you'll see a steady stream of failures in theory of mind and fine examples of narcissistic behavior to go along with that. Watch a married couple, and you'll see failures of theory of mind as one of the couple starts off a conversation midway through it, expecting the other to know what she's talking about, even though she started mid-sentence.
When our own back yard is as far as we can see, when we think that's how the rest of the world looks, we're asking for some serious miscommunication. If we want to rewrite the meaning of labels and what we want to label a dysfunction, a disorder, or simply a difference, then we need to agree on the definitions. Otherwise, we're speaking different languages using the same words.