5 ms·

My son has autism and through his schools and colleges I have known 100s of "autistic" kids and young adults. There is such variety in their traits and behaviou

by hunta2097 4y ago

My son has autism and through his schools and colleges I have known 100s of "autistic" kids and young adults. There is such variety in their traits and behaviours. I honestly don't find the label useful, I would say I am getting increasingly annoyed by it. There should be more work done on sub-classifications and grouping of different sub-conditions.

jklinger410 4y ago
As someone who has family with mid to low functioning autism, I find the label mix ups to be absolutely infuriating. When someone calls autism a "superpower" I have to leave the environment or log off before I say something awful.
- hunta2097 4y ago
  Yeah, i'm glad someone else finds that as infuriating as I do! "it's a spectrum" is just a lazy out, there needs to be proper classification or we are never going to get further with diagnosis and treatment.
  - axus 4y ago
    "political spectrum" is a term that frames viewpoints on a line from "good" to "bad", when actually there are so many political issues that the number of dimensions makes it hard to call it a spectrum. Electromagnetic waves are an actual spectrum, if you only look at the frequency.
PragmaticPulp 4y ago
> I honestly don't find the label useful, I would say I am getting increasingly annoyed by it. The exact same thing is happening to Long COVID: A small number of people are truly devastated by post-COVID issues that can last for years (or more, we don’t know yet). A much larger number of people have some milder post-COVID issues that can linger for months or longer, but don’t otherwise wreck their life. The problem is that both groups are being lumped into the “Long COVID” description, which is a huge disservice to those severely debilitated by post-COVID issues. It’s getting so bad that a lot of people don’t believe Long COVID can be a serious issue because everyone they’ve seen with “Long COVID” has relatively mild symptoms and they’re just not seeing the more rare Long COVID sufferers who have serious issues. We really need to stop lumping mild and serious conditions under the same label
- thewebcount 4y ago
  > A small number of people are truly devastated by post-COVID issues that can last for years (or more, we don’t know yet). I would argue that we do know, but that the instances of it are so stigmatized that doctors and the media are blind to it. Other diseases like POTS, MCAS, & EDS seem to have a lot in common with long COVID and look to me to be basically the same thing triggered by a different virus. My spouse has suffered from them for about 12-15 years now. It's particularly infuriating because there are even clinics set up for studying and treating long COVID for all the symptoms she has, but she isn't allowed in them because she's never had COVID. Hers definitely appears to have started after getting mono as a teenager. She was hit really hard, but after about 6 months was back to normal. Then in her late 30s it hit her and now she can't work or do much of anything. When she stands up, her heart rate can go up to 130bmp just standing and doing nothing. She starts to white out, but unlike some doesn't actually pass out, which may actually be worse. It's actually kind of a relief to have a large group of people very visibly get the same symptoms in a way that makes it much harder to dismiss as anxiety or depression. Hopefully if anything good comes out of COVID it will be that long COVID-like diseases will be studied and better understood.
alistairSH 4y ago
There should be more work done on sub-classifications and grouping of different sub-conditions. Interesting that you say that, as recently, society has moved in the other direction (dropping Aspergers as an independent diagnosis, instead lumping it in with ASD, for example). As another parent of an autistic son, I at least partly agree. The label "autism" on its own is mostly useless. The individual symptoms are much more useful to identify and work around/treat. But, that would just leave you with a laundry list of things to write/say/describe, so also of limited value outside medical/professional contexts. "He's autistic" vs "He has a severe executive functioning deficit, moderate OCD, mild ADD, stims in this particular way, and doesn't make eye contact with strangers."
cpuguy83 4y ago
Behaviors observed by others is far different from experiences of people who are actually autistic. Just because behavior (an outward expression) is not always consistent does not mean the label is useless. Even as a neuro-divergent (and very likely autistic, but not diagnosed) person I struggle to understand my actually diagnosed autistic childrens' (plural) experiences. One thing I think is fairly common is the sensitivity to pain (physical or emotional) is typically much stronger to the point of trauma that would be nothing for a "neurotypical". Whether or not that trauma is expressed outwardly (or in a specific way) varries greatly from person to person.

jklinger410 4y ago

As someone who has family with mid to low functioning autism, I find the label mix ups to be absolutely infuriating. When someone calls autism a "superpower" I have to leave the environment or log off before I say something awful.

hunta2097 4y ago
Yeah, i'm glad someone else finds that as infuriating as I do! "it's a spectrum" is just a lazy out, there needs to be proper classification or we are never going to get further with diagnosis and treatment.
- axus 4y ago
  "political spectrum" is a term that frames viewpoints on a line from "good" to "bad", when actually there are so many political issues that the number of dimensions makes it hard to call it a spectrum. Electromagnetic waves are an actual spectrum, if you only look at the frequency.

PragmaticPulp 4y ago

> I honestly don't find the label useful, I would say I am getting increasingly annoyed by it. The exact same thing is happening to Long COVID: A small number of people are truly devastated by post-COVID issues that can last for years (or more, we don’t know yet). A much larger number of people have some milder post-COVID issues that can linger for months or longer, but don’t otherwise wreck their life. The problem is that both groups are being lumped into the “Long COVID” description, which is a huge disservice to those severely debilitated by post-COVID issues. It’s getting so bad that a lot of people don’t believe Long COVID can be a serious issue because everyone they’ve seen with “Long COVID” has relatively mild symptoms and they’re just not seeing the more rare Long COVID sufferers who have serious issues. We really need to stop lumping mild and serious conditions under the same label

thewebcount 4y ago
> A small number of people are truly devastated by post-COVID issues that can last for years (or more, we don’t know yet). I would argue that we do know, but that the instances of it are so stigmatized that doctors and the media are blind to it. Other diseases like POTS, MCAS, & EDS seem to have a lot in common with long COVID and look to me to be basically the same thing triggered by a different virus. My spouse has suffered from them for about 12-15 years now. It's particularly infuriating because there are even clinics set up for studying and treating long COVID for all the symptoms she has, but she isn't allowed in them because she's never had COVID. Hers definitely appears to have started after getting mono as a teenager. She was hit really hard, but after about 6 months was back to normal. Then in her late 30s it hit her and now she can't work or do much of anything. When she stands up, her heart rate can go up to 130bmp just standing and doing nothing. She starts to white out, but unlike some doesn't actually pass out, which may actually be worse. It's actually kind of a relief to have a large group of people very visibly get the same symptoms in a way that makes it much harder to dismiss as anxiety or depression. Hopefully if anything good comes out of COVID it will be that long COVID-like diseases will be studied and better understood.

alistairSH 4y ago

There should be more work done on sub-classifications and grouping of different sub-conditions. Interesting that you say that, as recently, society has moved in the other direction (dropping Aspergers as an independent diagnosis, instead lumping it in with ASD, for example). As another parent of an autistic son, I at least partly agree. The label "autism" on its own is mostly useless. The individual symptoms are much more useful to identify and work around/treat. But, that would just leave you with a laundry list of things to write/say/describe, so also of limited value outside medical/professional contexts. "He's autistic" vs "He has a severe executive functioning deficit, moderate OCD, mild ADD, stims in this particular way, and doesn't make eye contact with strangers."

cpuguy83 4y ago

Behaviors observed by others is far different from experiences of people who are actually autistic. Just because behavior (an outward expression) is not always consistent does not mean the label is useless. Even as a neuro-divergent (and very likely autistic, but not diagnosed) person I struggle to understand my actually diagnosed autistic childrens' (plural) experiences. One thing I think is fairly common is the sensitivity to pain (physical or emotional) is typically much stronger to the point of trauma that would be nothing for a "neurotypical". Whether or not that trauma is expressed outwardly (or in a specific way) varries greatly from person to person.