In my day, I was (self diagnosed as) Asperger’s (obsesses on somewhat socially acceptable things like math and physics, gets good grades, very awkward), and seeing as there was zero effective treatment available, a formal diagnosis was counter productive. I did like speed a lot in my twenties though. I eventually worked out good coping mechanisms and aside from an absurdly low social battery, I do well in my way.
Which I bring up to raise the point that perhaps this ‘spectrum’ thing is pretty counter productive for the profoundly disabled on the far end. Seems like people on my end (functional but could use help) are sucking the oxygen out of room to their detriment now that there are useful treatments for us. Is there some sort push to separating the two again ?
Genuinely want to know, I feel some guilt for downgrading their suffering (even though I think, intellectually, it’s a way of cheaping out on their care that I have no control over).
If helping someone with mild symptoms took away from those with more severe symptoms, I’d see a point. But I haven’t come across any evidence of that.
It’s important to remember that there is more going on than what we see. I can get by well enough for most daily living tasks, but when I’m at my limit I’m treated like I should be able to handle it like a neurotypical. I hate having to explain to my managers at work what it’s like to shut down from overstimulation. I hate having to be seen as “unreceptive” to changes just because it takes time and understanding for me to adjust to new routines.
I’m trying my best, but to separate “mild” autism from “severe” autism diminishes the struggles that many of us go through, especially for those of us who didn’t receive diagnosis or treatment as children. I’ve had to learn how to navigate this bizarre world on my own, but just because I can “pass” sometimes doesn’t mean I’ve mastered it.
I see this sentiment even in my own coworkers, which is sad because we all work with autistic children. I have a learner who’s exceptionally bright. He asks questions that could only be properly answered by a college professor. Sometimes when discussing him, my coworkers will ask, “Why is he even here?” I have to explain that just because someone’s intelligent in some ways, that doesn’t mean they’re caught up with social and emotional intelligence. The kid has difficulty regulating himself, while he’s made massive progress in social skills while at our school - I’ve seen him grow from a kid who only wants to play alone and who would get annoyed when others tried to play with him, to one that happily joins in on games with others and even tolerates when another kid has a drastically different play style.
He’ll be getting ready to graduate and go off to public school soon, which will be bittersweet for me. I was a lot like him as a kid, and I can already imagine some of the difficulties he’ll face - many of which will come from adults who see his intelligence and assume he can do more than he’s capable of. So when I work with him, I make it a point to tell him that not everyone will understand what he’s going through, while teaching him functional communication to get his needs met regardless. I’m sure this little bird will fly high some day, we don’t have to teach him how to soar. But before he can get there, he has to learn how to land himself safely - that’s where I (and the rest of his teachers) come in.
Given how they are a cluster of conditions where most people have some subset of noticable conditions, I’m not sure there is a clear way to differentiate them.
Also, the last person I saw who brought up this argument about how functional they are and how it was unfair to people who are less functional was in the same comment also simultaneously talking about how they’re depressed or suicidal from extreme loneliness and strongly wished to be cured of their autism. That hardly seemed functional to me if you are struggling so much with life even if you can pretend to be functional enough to hold some jobs. I think many people have a strong tendency to downplay their own suffering. You can see the same behavior from people who’ve been victims of abuse who frequently will deny they’ve ever been abused, but if you ask them to describe what happened, they’ll describe abuse and then just try to say it really wasn’t that bad or that such is normal.
Also, we already have terminology to refer to lots of those traits commonly associated with autism. Nonverbal, hypersensitive, speech-processing disorder, and more. If there’s a reason to communicate those things, you can do so with or without mentioning autism.
I believe that there should be way more than 2 conditions which are currently just called autism. You seem to have one, my son is non-verbal and physically unable to complete basic tasks like eating a bowl of cereal, others feel uncomfortable if someone touches their face, others need to constantly fidgit, some require music to feel comfortable, some are obsessed over a certain topic like boats or trains or Lego or whatever. All are currently “autism” but don’t seem to be related. I wish they got rid of the "spectrum"and studied the separate types as separate conditions.
My neice is non-verbal. I’m on “the spectrum”. It’s not the same. Plenty of overlaps, but it’s not the same. I appreciate awareness for the topic at all, but also hope it doesn’t detract from treating the most serious symptoms
Exactly. They are different and should not be “autism”. Technically my kid is not non-verbal but limited to one or two words, like if he wants to watch blue’s clues he’ll just say blue or if he’s hungry he will just say yum yum.
I’m not a doctor but you and your niece have different conditions and likely have different causes and potentially different treatments. We should eliminate the word autism and separate it into like 5 or 10 different conditions and study them separately.
My sympathy and respect for your situation, and your son’s.
Right?, it’s not at all the same thing. Non-verbal and academically good with bad socialization are totally different in needs. There is a line through both conditions, and it could be useful in helping both, but making it seem like it’s just a smeared out spectrum from bad to good does no-one any favors.
Agreed. I feel like if we separate them doctors and scientists could study causes and care more effectively. What you need is totally different from my son, why are they combined? Yes the common cold, the flu and TB all result in coughing but don’t have the same treatment. They seem more related then “autism”.
The difficulty of diagnosing autism shows this. If you get strep throat, take a test and it’s either positive or negative. No one can say “yeah, it says I don’t have strep throat but…”
In my day, I was (self diagnosed as) Asperger’s (obsesses on somewhat socially acceptable things like math and physics, gets good grades, very awkward), and seeing as there was zero effective treatment available, a formal diagnosis was counter productive. I did like speed a lot in my twenties though. I eventually worked out good coping mechanisms and aside from an absurdly low social battery, I do well in my way.
Which I bring up to raise the point that perhaps this ‘spectrum’ thing is pretty counter productive for the profoundly disabled on the far end. Seems like people on my end (functional but could use help) are sucking the oxygen out of room to their detriment now that there are useful treatments for us. Is there some sort push to separating the two again ?
Genuinely want to know, I feel some guilt for downgrading their suffering (even though I think, intellectually, it’s a way of cheaping out on their care that I have no control over).
If helping someone with mild symptoms took away from those with more severe symptoms, I’d see a point. But I haven’t come across any evidence of that.
It’s important to remember that there is more going on than what we see. I can get by well enough for most daily living tasks, but when I’m at my limit I’m treated like I should be able to handle it like a neurotypical. I hate having to explain to my managers at work what it’s like to shut down from overstimulation. I hate having to be seen as “unreceptive” to changes just because it takes time and understanding for me to adjust to new routines.
I’m trying my best, but to separate “mild” autism from “severe” autism diminishes the struggles that many of us go through, especially for those of us who didn’t receive diagnosis or treatment as children. I’ve had to learn how to navigate this bizarre world on my own, but just because I can “pass” sometimes doesn’t mean I’ve mastered it.
I see this sentiment even in my own coworkers, which is sad because we all work with autistic children. I have a learner who’s exceptionally bright. He asks questions that could only be properly answered by a college professor. Sometimes when discussing him, my coworkers will ask, “Why is he even here?” I have to explain that just because someone’s intelligent in some ways, that doesn’t mean they’re caught up with social and emotional intelligence. The kid has difficulty regulating himself, while he’s made massive progress in social skills while at our school - I’ve seen him grow from a kid who only wants to play alone and who would get annoyed when others tried to play with him, to one that happily joins in on games with others and even tolerates when another kid has a drastically different play style.
He’ll be getting ready to graduate and go off to public school soon, which will be bittersweet for me. I was a lot like him as a kid, and I can already imagine some of the difficulties he’ll face - many of which will come from adults who see his intelligence and assume he can do more than he’s capable of. So when I work with him, I make it a point to tell him that not everyone will understand what he’s going through, while teaching him functional communication to get his needs met regardless. I’m sure this little bird will fly high some day, we don’t have to teach him how to soar. But before he can get there, he has to learn how to land himself safely - that’s where I (and the rest of his teachers) come in.
Given how they are a cluster of conditions where most people have some subset of noticable conditions, I’m not sure there is a clear way to differentiate them.
Also, the last person I saw who brought up this argument about how functional they are and how it was unfair to people who are less functional was in the same comment also simultaneously talking about how they’re depressed or suicidal from extreme loneliness and strongly wished to be cured of their autism. That hardly seemed functional to me if you are struggling so much with life even if you can pretend to be functional enough to hold some jobs. I think many people have a strong tendency to downplay their own suffering. You can see the same behavior from people who’ve been victims of abuse who frequently will deny they’ve ever been abused, but if you ask them to describe what happened, they’ll describe abuse and then just try to say it really wasn’t that bad or that such is normal.
Also, we already have terminology to refer to lots of those traits commonly associated with autism. Nonverbal, hypersensitive, speech-processing disorder, and more. If there’s a reason to communicate those things, you can do so with or without mentioning autism.
I believe that there should be way more than 2 conditions which are currently just called autism. You seem to have one, my son is non-verbal and physically unable to complete basic tasks like eating a bowl of cereal, others feel uncomfortable if someone touches their face, others need to constantly fidgit, some require music to feel comfortable, some are obsessed over a certain topic like boats or trains or Lego or whatever. All are currently “autism” but don’t seem to be related. I wish they got rid of the "spectrum"and studied the separate types as separate conditions.
My neice is non-verbal. I’m on “the spectrum”. It’s not the same. Plenty of overlaps, but it’s not the same. I appreciate awareness for the topic at all, but also hope it doesn’t detract from treating the most serious symptoms
Exactly. They are different and should not be “autism”. Technically my kid is not non-verbal but limited to one or two words, like if he wants to watch blue’s clues he’ll just say blue or if he’s hungry he will just say yum yum.
I’m not a doctor but you and your niece have different conditions and likely have different causes and potentially different treatments. We should eliminate the word autism and separate it into like 5 or 10 different conditions and study them separately.
My sympathy and respect for your situation, and your son’s.
Right?, it’s not at all the same thing. Non-verbal and academically good with bad socialization are totally different in needs. There is a line through both conditions, and it could be useful in helping both, but making it seem like it’s just a smeared out spectrum from bad to good does no-one any favors.
Agreed. I feel like if we separate them doctors and scientists could study causes and care more effectively. What you need is totally different from my son, why are they combined? Yes the common cold, the flu and TB all result in coughing but don’t have the same treatment. They seem more related then “autism”.
The difficulty of diagnosing autism shows this. If you get strep throat, take a test and it’s either positive or negative. No one can say “yeah, it says I don’t have strep throat but…”
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