Dang it, I had a short paragraph started, and lost it (and I'm typing on my phone!). Oh well, here goes.
The level of research, detail, and depth for this was impressive, at least to this layman. Until now, I only thought of autism in terms of behavior and cognitive processing. I had no idea of the studies and research connecting it to other conditions, especially some I considered unrelated such as cleft lip.
Further, I knew that the definition of autism changed and lumped other conditions such as Asperger's under one umbrella, and defining it all on the notion of a spectrum, which I figured was good since it shows we're learning more and finding connections between previously misunderstood conditions. That said, I realized I didn't truly understand the basics of a spectrum when you brought up the concept of the axes of spectrums, especially multiple axes. You also got my attention with pointing out how grouping different conditions under the same umbrella makes it difficult practically for the people on the front lines, that is, those with the diagnosis and their different caregivers, since support is not the same for all. Speaking for myself, support for my son with ASD doesn't look the same for my friend's son also with ASD.
I liken the disconnect you mentioned, between the clinicians rewriting the DSM-5 and the caregivers, to a disconnect in the aircraft maintenance world. The clinicians remind me of the engineers calling for changes or complete redesigns of equipment, but without the understanding of how the maintainers will have to twist themselves into knots inside the crowded interior of the aircraft making those changes, plus the headache that regular checks on that new part will cause, or how that part will face damage from conditions like severe weather or regular exposure to hydraulic fluid/fuel/engine oil.
This was really enlightening, and I'll be curious to read your future essays expanding on this, should you choose to write any. Thank you for putting this out there!
Thanks so much! You were one of the people I had in mind when I was writing this. I was wondering/worrying whether or not it would resonate with your lived experience. I’m so glad it did.
Hailing from the land of self-diagnosis… I think the focus on “is it a disorder” is a right one.
It feels like a meta-mutation. Something that has to be present in the gene pool for it to not be stagnant.
Non-autistic mind can and does dig deep, but, dare I say, it’s so much easier for an autistic folks to go all the way in the topic or behavior pattern. Rabbit-holing of the thinking process is the main benefit of this state. I would not say it’s a gift— drawbacks are real and plenty — but it is a useful trait in so many cases, especially in the information rich world of today.
I think you would benefit from a closer read. Especially the section on “New Research”. To put it another way:
Some forms of autism represent the natural variation within the human population.
Other forms of autism are serious neurodevelopmental diseases that lie outside of that natural variation. (These forms are due to damaging de novo genetic variants that are not passed down from generation to generation and are thus not in the gene pool).
One of the problems I’m trying to highlight is that when people talk about autism they’re often talking about different things.
Right, I didn’t skip that. And there is no disagreement. What is visible to me, albeit without academic background, is that the ability to focus and go deep in the task is a convergent evolution in one species, because it’s been so useful. There is a meta-autism mechanism in mammals, I think. Maybe a squirrel that hides too many nuts is crazy but it’s better than a lazy chill squirrel that gets wiped out by a particular long winter.
I feel like a squirrel often, and see this in folks with all forms of *perceived* autism, of all different origins that you have described. Hence, it’s a meta-mutation for cortical function, somewhere.
Thanks for clarifying, and also for giving me a chance to clarify.
(Also, sorry for assuming you didn’t read it—I was throwing in a lot of new concepts in this piece—and I think my take is fresh and different from what I usually see online—not a lot of autism researchers are writing about this stuff (the different kinds of autism and the genetics) in an accessible way from what I’ve seen.)
I can’t help but point out that the misunderstanding is exactly due to the poor language around autism that I’m criticizing.
Dang it, I had a short paragraph started, and lost it (and I'm typing on my phone!). Oh well, here goes.
The level of research, detail, and depth for this was impressive, at least to this layman. Until now, I only thought of autism in terms of behavior and cognitive processing. I had no idea of the studies and research connecting it to other conditions, especially some I considered unrelated such as cleft lip.
Further, I knew that the definition of autism changed and lumped other conditions such as Asperger's under one umbrella, and defining it all on the notion of a spectrum, which I figured was good since it shows we're learning more and finding connections between previously misunderstood conditions. That said, I realized I didn't truly understand the basics of a spectrum when you brought up the concept of the axes of spectrums, especially multiple axes. You also got my attention with pointing out how grouping different conditions under the same umbrella makes it difficult practically for the people on the front lines, that is, those with the diagnosis and their different caregivers, since support is not the same for all. Speaking for myself, support for my son with ASD doesn't look the same for my friend's son also with ASD.
I liken the disconnect you mentioned, between the clinicians rewriting the DSM-5 and the caregivers, to a disconnect in the aircraft maintenance world. The clinicians remind me of the engineers calling for changes or complete redesigns of equipment, but without the understanding of how the maintainers will have to twist themselves into knots inside the crowded interior of the aircraft making those changes, plus the headache that regular checks on that new part will cause, or how that part will face damage from conditions like severe weather or regular exposure to hydraulic fluid/fuel/engine oil.
This was really enlightening, and I'll be curious to read your future essays expanding on this, should you choose to write any. Thank you for putting this out there!
Thanks so much! You were one of the people I had in mind when I was writing this. I was wondering/worrying whether or not it would resonate with your lived experience. I’m so glad it did.
Hailing from the land of self-diagnosis… I think the focus on “is it a disorder” is a right one.
It feels like a meta-mutation. Something that has to be present in the gene pool for it to not be stagnant.
Non-autistic mind can and does dig deep, but, dare I say, it’s so much easier for an autistic folks to go all the way in the topic or behavior pattern. Rabbit-holing of the thinking process is the main benefit of this state. I would not say it’s a gift— drawbacks are real and plenty — but it is a useful trait in so many cases, especially in the information rich world of today.
I think you would benefit from a closer read. Especially the section on “New Research”. To put it another way:
Some forms of autism represent the natural variation within the human population.
Other forms of autism are serious neurodevelopmental diseases that lie outside of that natural variation. (These forms are due to damaging de novo genetic variants that are not passed down from generation to generation and are thus not in the gene pool).
One of the problems I’m trying to highlight is that when people talk about autism they’re often talking about different things.
But thank you for reading and commenting!
Right, I didn’t skip that. And there is no disagreement. What is visible to me, albeit without academic background, is that the ability to focus and go deep in the task is a convergent evolution in one species, because it’s been so useful. There is a meta-autism mechanism in mammals, I think. Maybe a squirrel that hides too many nuts is crazy but it’s better than a lazy chill squirrel that gets wiped out by a particular long winter.
I feel like a squirrel often, and see this in folks with all forms of *perceived* autism, of all different origins that you have described. Hence, it’s a meta-mutation for cortical function, somewhere.
Thanks for clarifying, and also for giving me a chance to clarify.
(Also, sorry for assuming you didn’t read it—I was throwing in a lot of new concepts in this piece—and I think my take is fresh and different from what I usually see online—not a lot of autism researchers are writing about this stuff (the different kinds of autism and the genetics) in an accessible way from what I’ve seen.)
I can’t help but point out that the misunderstanding is exactly due to the poor language around autism that I’m criticizing.
Is autism a disorder? Which kind of autism?
Is autism evolved? Again, which kind of autism?