Every few months, online or in real (physical) life, I hear the skeptical, questioning, puzzled phrase, "You're not autistic. You can't be." I've addressed the question here many times, and I still lack a single good response.
The "positive" versions:
The "negative" versions:
The reality is more complex, as it always is. Here's my current, as of this moment, take on if I am "the autistic me" or not:
I do not consider myself "autistic" 98.99% of the time. I simply don't think about it. That puts me at odds with many self-advocates, especially the most vocal and engaged advocates. "Autistic" is not an identity that's deeply ingrained, maybe because it is a relatively new label or maybe there's some other reason.
As I have written here in the past, I want to be considered successful based on my works as a writer, teacher, and tech. Judging me by a different scale because I happen to have physical and neurological challenges bothers me. It might be unavoidable, but I'd rather be a "good writer" than a "good autistic writer."
But, to the claims that I am "not autistic" there is another, more complex aspect that I have also addressed in the past.
Today, "autism" refers to a lot of things, some of them I doubt are as closely related as the single label suggests. I do not view "autisms" as one thing, and I'm not sure it is useful when others try to group every "autism" under the same umbrella.
I am not "autistic" by genetics, toxins, or whatever else some people associate with autistic traits. My birth was complex, there were serious injuries, and those seem to have effected my neurological and physical existence. That's it. Nothing sinister, nothing to rally against. A breech birth, in the 1960s.
There's no "regression" in my history. No sudden "change" that led to a diagnosis of autism. So, I am not the "autistic" many parents recognize. I have traits, and those traits have been grouped together on a checklist that some psychiatrists decided to call "autistic."
I'm just whatever I am. As I wrote earlier, I simply want to be the best at what I enjoy doing. That's probably not being the best "autistic" — that's not my goal.
The "positive" versions:
- Because you are successful, self-expressive, driven, and have a career, it is hard to believe you are autistic.
- Because you are considered intelligent…
- Because you did well in school…
- Because you have a wife, good relationship with family, and seem to lead a "normal" life (especially for an introvert)…
- Because I've never seen a meltdown, non-verbal day, shaking, stereotypical behaviors…
The "negative" versions:
- You must be lying to get attention.
- You played the neurologists for suckers.
- You are merely an awkward geek, like other smart people.
- You are using autistic traits as an excuse for being lazy.
The reality is more complex, as it always is. Here's my current, as of this moment, take on if I am "the autistic me" or not:
I do not consider myself "autistic" 98.99% of the time. I simply don't think about it. That puts me at odds with many self-advocates, especially the most vocal and engaged advocates. "Autistic" is not an identity that's deeply ingrained, maybe because it is a relatively new label or maybe there's some other reason.
As I have written here in the past, I want to be considered successful based on my works as a writer, teacher, and tech. Judging me by a different scale because I happen to have physical and neurological challenges bothers me. It might be unavoidable, but I'd rather be a "good writer" than a "good autistic writer."
But, to the claims that I am "not autistic" there is another, more complex aspect that I have also addressed in the past.
Today, "autism" refers to a lot of things, some of them I doubt are as closely related as the single label suggests. I do not view "autisms" as one thing, and I'm not sure it is useful when others try to group every "autism" under the same umbrella.
I am not "autistic" by genetics, toxins, or whatever else some people associate with autistic traits. My birth was complex, there were serious injuries, and those seem to have effected my neurological and physical existence. That's it. Nothing sinister, nothing to rally against. A breech birth, in the 1960s.
There's no "regression" in my history. No sudden "change" that led to a diagnosis of autism. So, I am not the "autistic" many parents recognize. I have traits, and those traits have been grouped together on a checklist that some psychiatrists decided to call "autistic."
I'm just whatever I am. As I wrote earlier, I simply want to be the best at what I enjoy doing. That's probably not being the best "autistic" — that's not my goal.
My son, is a lot like you are and I refuse to allow him to be "autistic". Yes, his social skills are poor. Academically he's doing amazing - Univ stream. Inferencing... horrible. He will be "you" one day but unlike you, he will be himself not a label. That is what needs to be done for the HFA crowd. They need to stop needing the crutch of a label and realize it's for services only. We still have an IEP, I need it for a few more things... like an extra year of high school and better transition planning... but otherwise it's worthless but the school likes it's extra cash that goes with it.
ReplyDeleteAre you needing it to justify you're way of doing things?? To belong to a "club?? Or do you truly need the services it provides?? That's what adults need to decide for themselves. These issues I am now having since the kid has now seen his IEP.... long story, not impressed.
The end remains the same. Yes, he has "issues". Probably under the V it's now social communication disorder. But it is his brother that is 'autistic" and disabled... not the one that "passes for normal". It's time to remove those that can live in the real world from the dx for those that are truly disabled.
The "label", as you call it, of autism is not just for services. In fact, I have never received services for autism, but I am diagnosed with it.
DeleteAutism is a diagnosis, not a label. It is a name for a set of symptoms. Just because one person's set of symptoms is more severe than another's doesn't mean they don't have the same disorder. That would be like saying someone should stop saying they have cancer because they are only in stage one and there are other people that are going to die from it.
Having a diagnosis of autism isn't just about getting through life. It is about realizing that we are different. It's about realizing that things may be harder for us than other people. That doesn't mean we can't do those things; it just means they're harder.
And yes, it can be a way of justifying things. At the end of the day when you're thinking about the mistakes you made, it can be a way to help you realize that it is okay. It can be a way to help you understand that you're not an incompetent person, but that maybe this thing will take you a little longer to figure out.
Autism is not something we "allow" ourselves to be. It has nothing to do with sheer willpower and determination. It is a disorder. It is something that truly affects us- ALL of us. Even those of us that appear "normal." We can learn social norms and learn certain behavior, but that doesn't "cure" us.
And social communication disorder is not the same as autism. It doesn't include repetitive behavior. So perhaps with SCD you'd be a little more correct in your skepticism.
We could debate the diagnostic nature of the DSM-V, since it addresses traits observed, not etiologies behind those. It's problematic, from a research perspective. When you learn what causes something, then you have to classify based on the new information.
DeleteAs we learn the etiologies of "autism" we will see medical researchers reclassify the labeled, observed "autism" of the DSM into more defined groupings. A number of medical historians have written on this process, as we split and better identify what we thought were singular conditions, diseases, traits, etc.
A simple example from autism is the move of Rett's Syndrome away from autism. RS has a clear, definable, observable genetic etiology. Most researchers no longer group it with autism or childhood degenerative disorders.
As a researcher, I'm convinced there are multiple "autisms" we need to approach differently, based on the needs of the individuals.
I have struggled with a response to this question as well. Often, people who are somewhat familiar with autism will say something like, "Well, you must be pretty high-functioning." To which I usually reply, "Well, it must be a good day, then." (and yes, there is a strong current of frustration and anger behind it much of the time).
ReplyDeleteI resent the fact that someone with autism (or any disability or even a chronic illness) is disbelieved if they happen to be having a good day or finding success in a certain area. Just as I want the understanding that sometimes I will have a bad day, I want to be allowed to have a good day too.
A lot of people will tell me that my son is not autistic though we had him diagnosed recently as a means of figuring out how he learns so we can teach him. In my eyes he's someone with sensory preferences, as we all are. And if there's anything I want to help him with it's communication 'cause it can be the most frustrating for him. You are a great honest writer and I'll continue reading. Really enjoy what I've read so far. Again, thanks for sharing.
ReplyDelete