English is a very ambiguous language at times. We have one word for love, a concept that spans a mother's bond with her baby, the relationship between two platonic friends, and the passion between two lovers. If that doesn't strike you as ridiculous, I'm not sure what will.
We have a similar problem, I've come to realize, with the word "autism." The word itself refers to such a broad category of people, it's all but meaningless. I've been trying to define autism since I got my diagnosis years ago. I have been unsuccessful, and this perhaps explains why:
"Autism" means many different things to many different people. It is a blanket label, slapped on any child that fits the laughably wide criteria in psychology's diagnostic manual. No wonder, perhaps, that I didn't recognize my symptoms in the manual when I was studying it. Nor did I particularly have much in common with many of the people who also claimed the label of autism.
The diagnosis F84.0, or autism, includes me. I care for myself. I own a car, I live independently, I went to and graduated college. I have problems, but I'm clearly doing a few things okay. A good start, right? Well, F84.0 also includes a 12 year old who deteriorated suddenly around 4 years of age, cannot be toilet trained, cannot care for herself, can barely communicate... her life's story is obviously not written yet, but needless to say, it's going to be a struggle. Regular schooling hasn't been an option, given the lack of self-care skills and development.
I've discussed the autism spectrum before, and how wide and diverse it is. To this we can add the adage, "If you've met one person with autism, you've met one person with autism." This is not a good situation. On paper, I look precisely the same as my example child. And that diagnosis is often all professionals see. The point of a diagnosis is to convey, in a simple descriptor, a person's situation. If, for example, I went to the doctor and told them I had the flu, they would immediately know what to tell me to do. You can't, or at least really shouldn't, do that with autism. Every person on the spectrum is different. The child I'm using as an example has vastly different care and support needs than I do, and lumping us together under a single heading and thus implying our situations are identical is... disastrous.
If you met the girl I described prior to meeting me, and became familiar with her situation, you would be concerned that I don't have a guardian and am off on my own. You might assume I'm being neglected and need in-home care around the clock. Needless to say, I would not appreciate those assumptions.
If you met me, became familiar with my situation, and then met the girl I described, you would assume she's simply being troublesome, stubborn, and mean. You would be very very wrong. And she and her family would suffer for those assumptions.
I'm simplifying the situation, obviously, and there are a lot of autistic people somewhere between me and the example girl, and off on their own with entirely different sets of symptoms and problems.
When I initially got my diagnosis, I was given a tangle of words that was supposed to describe what was wrong with me. Chief among these was autism. As such, I ascribed everything that was wrong with me that wasn't covered under the other diagnoses as "autism." But I'm educated in psychology, and soon I began to question that categorization and what precisely autism was. So I did my homework. "Autism" as it's listed in the DSM-IV, or the new DSM-V, has nothing about my gut issues. Nothing about my light and sound sensitivity. Nothing about my pickiness about clothing and food when I was growing up. It is listed, quite literally, as an impairment of social skills and communication skills, with a few side traits that may or may not be applicable to every given case.
So eventually between my reading and my exposure to the neurodiversity movement, I leaned away from blaming autism for every oddity about myself. But not everyone does. A lot of parents, for example, have their hands full caring for their kids who tend to bolt, or have regular meltdowns, and don't have time for philosophy given the immediate needs of their children and theirselves. I also can't safely say even if they did have all that time and spare sanity to devote to the problem, that they would come to the same conclusion I did.
So now when people discuss autism, they're discussing not only the social and communication deficits, they're also discussing the food difficulties, the sensitivities to sensations, the seizures, the tantrums, the allergies... And they're discussing these things in the context with which they are familiar. A context I am, as often as not, unfamiliar with, at least in personal experience.
This troubles me. My best resource is my personal experience, but it is insufficient. And I will be expected to represent the entire of the spectrum. I'm trying my best with the books I've been reading, and the articles, and talking with other people. That seems like far too little, given the breadth of the experiences out there.
We have a similar problem, I've come to realize, with the word "autism." The word itself refers to such a broad category of people, it's all but meaningless. I've been trying to define autism since I got my diagnosis years ago. I have been unsuccessful, and this perhaps explains why:
"Autism" means many different things to many different people. It is a blanket label, slapped on any child that fits the laughably wide criteria in psychology's diagnostic manual. No wonder, perhaps, that I didn't recognize my symptoms in the manual when I was studying it. Nor did I particularly have much in common with many of the people who also claimed the label of autism.
The diagnosis F84.0, or autism, includes me. I care for myself. I own a car, I live independently, I went to and graduated college. I have problems, but I'm clearly doing a few things okay. A good start, right? Well, F84.0 also includes a 12 year old who deteriorated suddenly around 4 years of age, cannot be toilet trained, cannot care for herself, can barely communicate... her life's story is obviously not written yet, but needless to say, it's going to be a struggle. Regular schooling hasn't been an option, given the lack of self-care skills and development.
I've discussed the autism spectrum before, and how wide and diverse it is. To this we can add the adage, "If you've met one person with autism, you've met one person with autism." This is not a good situation. On paper, I look precisely the same as my example child. And that diagnosis is often all professionals see. The point of a diagnosis is to convey, in a simple descriptor, a person's situation. If, for example, I went to the doctor and told them I had the flu, they would immediately know what to tell me to do. You can't, or at least really shouldn't, do that with autism. Every person on the spectrum is different. The child I'm using as an example has vastly different care and support needs than I do, and lumping us together under a single heading and thus implying our situations are identical is... disastrous.
If you met the girl I described prior to meeting me, and became familiar with her situation, you would be concerned that I don't have a guardian and am off on my own. You might assume I'm being neglected and need in-home care around the clock. Needless to say, I would not appreciate those assumptions.
If you met me, became familiar with my situation, and then met the girl I described, you would assume she's simply being troublesome, stubborn, and mean. You would be very very wrong. And she and her family would suffer for those assumptions.
I'm simplifying the situation, obviously, and there are a lot of autistic people somewhere between me and the example girl, and off on their own with entirely different sets of symptoms and problems.
When I initially got my diagnosis, I was given a tangle of words that was supposed to describe what was wrong with me. Chief among these was autism. As such, I ascribed everything that was wrong with me that wasn't covered under the other diagnoses as "autism." But I'm educated in psychology, and soon I began to question that categorization and what precisely autism was. So I did my homework. "Autism" as it's listed in the DSM-IV, or the new DSM-V, has nothing about my gut issues. Nothing about my light and sound sensitivity. Nothing about my pickiness about clothing and food when I was growing up. It is listed, quite literally, as an impairment of social skills and communication skills, with a few side traits that may or may not be applicable to every given case.
So eventually between my reading and my exposure to the neurodiversity movement, I leaned away from blaming autism for every oddity about myself. But not everyone does. A lot of parents, for example, have their hands full caring for their kids who tend to bolt, or have regular meltdowns, and don't have time for philosophy given the immediate needs of their children and theirselves. I also can't safely say even if they did have all that time and spare sanity to devote to the problem, that they would come to the same conclusion I did.
So now when people discuss autism, they're discussing not only the social and communication deficits, they're also discussing the food difficulties, the sensitivities to sensations, the seizures, the tantrums, the allergies... And they're discussing these things in the context with which they are familiar. A context I am, as often as not, unfamiliar with, at least in personal experience.
This troubles me. My best resource is my personal experience, but it is insufficient. And I will be expected to represent the entire of the spectrum. I'm trying my best with the books I've been reading, and the articles, and talking with other people. That seems like far too little, given the breadth of the experiences out there.
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