4 ms·

People like you are one of the biggest reasons autism is too broad of a term. Maybe these words seem loaded to self-diagnosed, asperger glorifying, "neurodiver

People like you are one of the biggest reasons autism is too broad of a term. Maybe these words seem loaded to self-diagnosed, asperger glorifying, "neurodivergent," ever-woke social justice armchair linguists like yourself. I'd love for all of you to be squarely outside of the same diagnosis my little brother has. I can't stress how much your "fully functioning" "open to question" "non-illness difference" version of autism deeply offends those who have been touched by real autism. Not, got me a job at Google savante autism. Not, I'm a nerd who remembers every episode of Naruto and no one likes me because I never shower so my excuse is my neurodivergence autism. I long for the day when my brother's socially crippling mood swings and severe learning disability is no longer trapped under the same umbrella as a group of people who want to remove disability, retardation, or illness from a definition that has literally destroyed the lives of many individuals and families across the world. I am disgusted by this optimistic view on autism. Championed by the most privileged of those with the disorder. You all fight a "stigma" for a mental disorder that you find has some "perks" as if the child thrashing his head against a wall and screaming at the top of his lungs because his brain registers every other sensation as pain and pain as pleasure doesn't even exist. I have no sympathy for your entire assessment yet we agree on one thing, me maybe more so than you. The sooner we redefine autism into a multitude of different mental disorders, the better.

SolaceQuantum 8y ago
Calling people who have autism to not have "real autism" is a misinterpretation of the many behaviors associated with autism and why it may be considered neurodivergence or a developmental illness instead. There are people who are non-verbal but sign or write perfectly well, what are they considered? There are people who are very vocal but speak with an awkward cadence and have mood swings, are they "really autistic"? There are people who are verbally eloquent but constantly participate in stim behavior and need constant observation to make sure they clothe, bathe, and feed themselves appropriately, do they have "real autism"? There are people who may be able to hold down a part time job but cannot have a full time position because they have no capacity towards basic organizational skills necessary to have regular hours, do they have "real autism"? There are people who are nonverbal and constantly stim and have severe learning disabilities but have enough organizational ability to hold full-time hours in, say, construction, because they're highly organized and don't have sensory problems with the work. Do they have "real autism"? Autism is complicated because it is more a set of descriptions of related symptoms, in which each individual may have more or less of each symptom. From what I understand, autism can't be viewed as a "rating" of better or worse autism. Instead it should be viewed as a gradient of behaviors, individually are considered more or less functional. I should also note that your language is highly dehumanizing to your bother, emphasizing on the impact of his autism on the people around him, and defining "real autism" not by symptoms but by how it affects non-autistic people. I don't believe this is much different than trying to direct a conversation about autism to making it a conversation about how hard it is to be a non-autistic and live with autistic people. EDIT: Of note, I agree that it may be more pertinent to create different categories of autism based on the group of symptoms, but I'm not sure (and I don't know if there are studies) if they can be so easily teased apart as implied here.
- smittywerben 8y ago
  >> if the child thrashing his head against a wall and screaming at the top of his lungs because his brain registers every other sensation as pain and pain as pleasure This is sad. Is this the right way for me to speak about it? Your just jerking your internet boner to someone who is in pain.
  - dang 8y ago
    It's not ok to attack someone else like this regardless of how wrong they are. We ban accounts that do it, so please don't do it again. Instead, read https://news.ycombinator.com/newsguidelines.html https://news.ycombinator.com/newsguidelines.html and follow this simple heuristic: if you have a substantive point to make, make it thoughtfully; if you don't, please don't comment until you do.
    - smittywerben 8y ago
      Apologies I'll simply report next time. Moderation guidelines on 'Depression' posts here are consistent and progressive[0]. Other disorders are filled with comments that routinely disgrace medical research. I'd still like to see these threads as impartial as Depression. Looking around this post, you addressed most of the issues, so I appreciate that. [0] https://news.ycombinator.com/item?id=16491986 https://news.ycombinator.com/item?id=16491986
- tejohnso 8y ago
  > Autism is complicated because it is more a set of descriptions of related symptoms, in which each individual may have more or less of each symptom. From what I understand, autism can't be viewed as a "rating" of better or worse autism. Instead it should be viewed as a gradient of behaviors, individually are considered more or less functional. I guess that's what the article is about, but it doesn't communicate the range as well as your post does. I wonder though, what's the purpose of having such an amorphous definition? The word becomes completely useless the more symptoms it describes. And the more symptoms it describes, the more unlikely it is that they're even at all related in terms of root cause and treatment. And I would think that results in a reduction in research progress. > I agree that it may be more pertinent to create different categories of autism based on the group of symptoms I know little about this topic, but this seems destined to fail and unnecessary. What's wrong with simply describing the actual symptoms? They're clear enough on their own. And boxing them up into a convenient single word diagnosis doesn't seem helpful at this stage of understanding. For example: > There are people who are non-verbal but sign or write perfectly well, what are they considered? I would consider these as people who communicate well via non-verbal methods only. > There are people who are very vocal but speak with an awkward cadence and have mood swings, are they "really autistic"? Drop the autistic binary and just call them people with mood swings. Perhaps clarify that the mood swings can be disruptive and uncontrollable, or if that isn't the case, don't mention it at all because everybody has non-disruptive mood swings and deals with it. The awkward cadence doesn't even require mentioning if they can communicate effectively. > There are people who are verbally eloquent but constantly participate in stim behavior and need constant observation to make sure they clothe, bathe, and feed themselves appropriately, do they have "real autism"? The description stands on its own perfectly well without trying to determine if it's "autism". How does it help to make that distinction?
whatshisface 8y ago
There used to be a distinction between aspergers and autism in the DSMV, although the eventually removed it on the grounds that the two groups were just different magnitudes of the same symptoms. I think that we should keep the term aspergers around for social reasons, maybe not in our medical lexicon but surely in our cultural one.
dang 8y ago
> People like you [...] I am disgusted [...] I have no sympathy There's obviously deep personal experience behind your comment, and that commands respect, but you can't attack other users here, no matter how wrong they are. Please read https://news.ycombinator.com/newsguidelines.html https://news.ycombinator.com/newsguidelines.html and post civilly and substantively, or not at all. I know it's not easy when one's struggles and wounds get suckerpunched by another comment. But we all need to remember that in a forum like this, where relational bandwidth is extremely limited, someone else's comment is constructed at least 50% out of our own interpretation of their words. Maybe a lot more than 50%. More here if anyone's interested: https://news.ycombinator.com/item?id=13102115 https://news.ycombinator.com/item?id=13102115.
rwnspace 8y ago
I am also the older brother to an autistic sibling. Thank you for writing this, I have the same thoughts and fury. To be glib, I wish there was a specific category of disorder for those people who reflect the tale of the Princess and the Pea when it comes to their 'neurodifferences'.

SolaceQuantum 8y ago

Calling people who have autism to not have "real autism" is a misinterpretation of the many behaviors associated with autism and why it may be considered neurodivergence or a developmental illness instead. There are people who are non-verbal but sign or write perfectly well, what are they considered? There are people who are very vocal but speak with an awkward cadence and have mood swings, are they "really autistic"? There are people who are verbally eloquent but constantly participate in stim behavior and need constant observation to make sure they clothe, bathe, and feed themselves appropriately, do they have "real autism"? There are people who may be able to hold down a part time job but cannot have a full time position because they have no capacity towards basic organizational skills necessary to have regular hours, do they have "real autism"? There are people who are nonverbal and constantly stim and have severe learning disabilities but have enough organizational ability to hold full-time hours in, say, construction, because they're highly organized and don't have sensory problems with the work. Do they have "real autism"? Autism is complicated because it is more a set of descriptions of related symptoms, in which each individual may have more or less of each symptom. From what I understand, autism can't be viewed as a "rating" of better or worse autism. Instead it should be viewed as a gradient of behaviors, individually are considered more or less functional. I should also note that your language is highly dehumanizing to your bother, emphasizing on the impact of his autism on the people around him, and defining "real autism" not by symptoms but by how it affects non-autistic people. I don't believe this is much different than trying to direct a conversation about autism to making it a conversation about how hard it is to be a non-autistic and live with autistic people. EDIT: Of note, I agree that it may be more pertinent to create different categories of autism based on the group of symptoms, but I'm not sure (and I don't know if there are studies) if they can be so easily teased apart as implied here.

smittywerben 8y ago
>> if the child thrashing his head against a wall and screaming at the top of his lungs because his brain registers every other sensation as pain and pain as pleasure This is sad. Is this the right way for me to speak about it? Your just jerking your internet boner to someone who is in pain.
- dang 8y ago
  It's not ok to attack someone else like this regardless of how wrong they are. We ban accounts that do it, so please don't do it again. Instead, read https://news.ycombinator.com/newsguidelines.html https://news.ycombinator.com/newsguidelines.html and follow this simple heuristic: if you have a substantive point to make, make it thoughtfully; if you don't, please don't comment until you do.
  - smittywerben 8y ago
    Apologies I'll simply report next time. Moderation guidelines on 'Depression' posts here are consistent and progressive[0]. Other disorders are filled with comments that routinely disgrace medical research. I'd still like to see these threads as impartial as Depression. Looking around this post, you addressed most of the issues, so I appreciate that. [0] https://news.ycombinator.com/item?id=16491986 https://news.ycombinator.com/item?id=16491986
tejohnso 8y ago
> Autism is complicated because it is more a set of descriptions of related symptoms, in which each individual may have more or less of each symptom. From what I understand, autism can't be viewed as a "rating" of better or worse autism. Instead it should be viewed as a gradient of behaviors, individually are considered more or less functional. I guess that's what the article is about, but it doesn't communicate the range as well as your post does. I wonder though, what's the purpose of having such an amorphous definition? The word becomes completely useless the more symptoms it describes. And the more symptoms it describes, the more unlikely it is that they're even at all related in terms of root cause and treatment. And I would think that results in a reduction in research progress. > I agree that it may be more pertinent to create different categories of autism based on the group of symptoms I know little about this topic, but this seems destined to fail and unnecessary. What's wrong with simply describing the actual symptoms? They're clear enough on their own. And boxing them up into a convenient single word diagnosis doesn't seem helpful at this stage of understanding. For example: > There are people who are non-verbal but sign or write perfectly well, what are they considered? I would consider these as people who communicate well via non-verbal methods only. > There are people who are very vocal but speak with an awkward cadence and have mood swings, are they "really autistic"? Drop the autistic binary and just call them people with mood swings. Perhaps clarify that the mood swings can be disruptive and uncontrollable, or if that isn't the case, don't mention it at all because everybody has non-disruptive mood swings and deals with it. The awkward cadence doesn't even require mentioning if they can communicate effectively. > There are people who are verbally eloquent but constantly participate in stim behavior and need constant observation to make sure they clothe, bathe, and feed themselves appropriately, do they have "real autism"? The description stands on its own perfectly well without trying to determine if it's "autism". How does it help to make that distinction?

whatshisface 8y ago

There used to be a distinction between aspergers and autism in the DSMV, although the eventually removed it on the grounds that the two groups were just different magnitudes of the same symptoms. I think that we should keep the term aspergers around for social reasons, maybe not in our medical lexicon but surely in our cultural one.

dang 8y ago

> People like you [...] I am disgusted [...] I have no sympathy There's obviously deep personal experience behind your comment, and that commands respect, but you can't attack other users here, no matter how wrong they are. Please read https://news.ycombinator.com/newsguidelines.html https://news.ycombinator.com/newsguidelines.html and post civilly and substantively, or not at all. I know it's not easy when one's struggles and wounds get suckerpunched by another comment. But we all need to remember that in a forum like this, where relational bandwidth is extremely limited, someone else's comment is constructed at least 50% out of our own interpretation of their words. Maybe a lot more than 50%. More here if anyone's interested: https://news.ycombinator.com/item?id=13102115 https://news.ycombinator.com/item?id=13102115.

rwnspace 8y ago

I am also the older brother to an autistic sibling. Thank you for writing this, I have the same thoughts and fury. To be glib, I wish there was a specific category of disorder for those people who reflect the tale of the Princess and the Pea when it comes to their 'neurodifferences'.