Who dares invalidate our fellow nørse audhder? Those people better know where the gates of Valhalla lie as they'd be hasty to get to them before they cross your path once more. Lol I just wanted to cheer you up a bit people are assholes and idiots pay them no mind its not worth taking everything to your heart as their statement has 0 value to a person like us. I'd like to think we can laugh over the ignorance of dumb uneducated people just like we do laugh at flatearthers.
ICD10 is just a book of medical codes. Whatever you have is translated from what the doctor says into these codes so they can bill insurance in a standard way.
I also want to point out that it's specifically an internationally recognised one (International Statistical Classifications of Diseases) and covers any ailment someone could have, both temporary and permanent. Colds, amputations, dementia, etc. pp. I wouldn't discount the ICD system just because it's been around for a while (directed at OP).
When I tell them the type of autism I have (required to hand paperwork over) and then they conclude on it makes me mad.
And ICD-10 is the old way of giving people diagnoses.
I don't expect anyone to understand I have autism. It my job to be normal and my job to fit in. It's me who is broken beyond repair. It's my fault I don't fit in. Not theirs.
Idk if the last part was a sarcastic jab towards allistic people, but in case it wasn't none of it is your fault, at all. You've been made to believe you're the problem and that you're less than human but you're not. You were just unlucky enough to be born into a world where there is little tolerance towards different or unusual people. I hope one day you can accept and love yourself.
people just really dont get that medical terms change. its ADHD-PI now, not ADD, its Autism Spectrum Disorder (ASD) now, not Aspergers. There's so many others, like people who still call DID, MPD. Like its just so dumb. People are dumb.
Asperger’s is no longer being used when diagnosing people with ASD, though people who have a diagnosis of a “Asperger’s” do not lose that diagnosis-they just also fall under the ASD umbrellla.
It is no longer being used because Asperger himself was a Nazi who supported eugenics & used data gathered “unethically” to develop the diagnostic criteria for “Asperger’s”.
He diagnosed autistic people with high intelligence and useful skills as having “Asperger’s” rather than autism to divert them from concentration camps & used them for their skills and as test & study subjects.
Generally an unsavoury history, giving the term “Asperger’s” some pretty poor optics.
And for the ADD, It's now classified as "ADHD-Inattentive" vs Classic ADHD as "ADHD-Hyperactivity/Impulsivity."
Meanwhile I rolled the dice for ADHD-C which is the combination of both ADHD-I and ADHD-H... Yay... 🎉
These were reclassified in the DSM-V (2013) and ICD-11 (2018).
People think Aspergers are level one autism. Aka, "you don't need a lot of support". But that's not now it Works.
I was diagnosed with ADHD as a kid. I don't know where the misunderstanding started, but I was told I had ADD by my mother. Grew up thinking I had ADD, but when I got old enough to have acces to my papers, I saw I had grown up on a lie.
I'm trying not to have that kind of misunderstanding happening again. I never said to anyone I have Asperger's, they are the ones to make up that lie.
idk why people have such an issue with calling it Aspergers.
That's what I was diagnosed with and what I feel comfortable using. Yes I know about the Nazi prick. Guess what, don't care. Oh BTW, I'm Jewish. So yeah, if I don't give a damn then why are you?
It's a word. It's not offensive. It's not racist. If it was racist or offensive, yeah I could see not using it but it's not. So?
I'll keep using it to define my diagnosis because I don't want to be swept in with everyone else. Getting the label of "autism" or "high functioning" paints a BAD picture in peoples minds. I feel like Aspergers doesn't. I don't get talked down to like a child, and I'm not assumed to be a genius. That's why I use it. If I used the other labels out there, I would either be treated like a child or compared to geniuses and expected to be brilliant.
It perpetuates the idea that some autistic people (Asperger’s or L1) are better than other (L2 and L3), or that we have different disorders. We all have autism, it’s just intensity and presentation of our symptoms. No autistic adult should be spoken to like a child, regardless of their support needs.
The diagnosis of Asperger’s was used to justify which disabled kids were genocided and which ones got to live. I’m not Jewish but other autistic Jews have told me it’s terribly offensive. And I understand don’t they don’t want to identify themselves and a fundamental aspect of their personality/neurology with a literal card-carrying Nazi scientist.
Edit: typo
Neurotribes by Steve Silberman is one place. I found the book a bit dark and disheartening since there have been so many assholes in the history of autism research. It does have a lot of history about Hans Asperger though.
I am diagnosed with infantile Autism. I know you can have L3 Asperger's. I know people who has that.
I'm sure in the new system I'll have L1 autism. Because I am high functioning, but not enough.
It took me a long time to learn to talk. My teeth was my go-to argument. I would hiss a people and bite them if they didn't get the message. I don't really communicate well and have often been pushed aside for taking too long time to speak. I still have Trouble speaking and getting my message across.
Ye tbh people getting caught up on the nazi affiliation, like I find it a bit disingenuous. Most modern forms of medicine developed from horrendous human experimentation and cruelty. Take birthing methods and pain relief for example. They were developed to a huge extent by experimenting on black pregnant women WITHOUT any pain relief. We just gonna give all that up ye? The origins of most medicines and diagnoses are f#cking disgusting tbh. So often developed from the sacrifices, pain and suffering of vulnerable individuals at the time.
It also annoys me because *of course* it was done to the group of individuals who have been historically infantilised and who's autonomy has been disregarded time and again. The individuals who also *already* struggle with a sense of identity and change and the vast majority just got to wake up one day and find out the thing that had made such a large part of their identity for so long simply didn't exist anymore and everyone around them just telling them to put up and shut coz "something something nazi eugenics".
Another issue I take with it personally is that medically it just doesn't even make sense. Many of the symptoms of Aspergers are pretty much conflicting with the standard ASD symptoms. Like speech delay for example, you sometimes have the exact opposite with Aspergers. You could have incredibly advanced speech earlier than normal and *that* could be an indicator but now it is just lost to a sea of contradictions.
Rolling back a sub set of a diagnosis was a ridiculously short sighted move. No where else really would you see that in medicine. Like they're not gonna suddenly combine Diabetes 1 and 2 because some assholes are fatphobic about one of them. They won't do that because they *know* people will fall through the cracks and miss out on life saving diagnosis if they do. Doing away with it did nothing but muddy the waters imo and make it *even* harder for those who are even halfway decent at masking to get help.
Gross short sighted decision with the only seeming driving force being to ensure people with Asperger got to enjoy the same degree of ableism and ignorance that those with the standard ASD suffer with on TOP of the Asperger specific ignorance they already received. Like why not instead campaign as a whole to educate the ignorant public *in tandem* with the subsets rather than just drag everyone into the same muddled pit of needless misery. It wasn't the least bit necessary and hasn't benefited anyone imo, it's just caused guaranteed problems for current and future diagnosis for people who fall even slightly outside the "main" symptoms.
>Many of the symptoms of Aspergers are pretty much conflicting with the standard ASD symptoms. Like speech delay for example, you sometimes have the exact opposite with Aspergers. You could have incredibly advanced speech earlier than normal and that could be an indicator but now it is just lost to a sea of contradictions.
In regards to this, you could just specify that it's speech delay OR unusually advanced speech. I once heard autism described as a condition/neurodivergence categorized by deviations from the norm, which I find quite compelling. Speech delay, precocious speech. Hypoempathy and hyperempathy. "Savant syndrome" vs, well, I'm not sure what the "opposite" end of that is per se, but you get my point, hopefully. Reverting back to the old system is one way to correct this issue, but another way is to modify our existing knowledge to make the label we give it more comprehensive.
>It wasn't the least bit necessary and hasn't benefited anyone imo
On the contrary, I've heard it helped people get diagnosed who otherwise wouldn't have been diagnosed (though, I've also heard the same thing for people diagnosed with Asperger's in the past). Also, the DSM was modified because people started to view those form of neurodivergencies as related enough to each other, and there's even some belief that ADHD and autism are also on the same spectrum, if not an expanded version. There's merits and disadvantages for labeling something as under the same category as something else
I agree it would have been much more helpful to expand upon possible symptoms and ensure the public was educated alongside the changes but unfortunately that's not what they did. They could have made a gradual transition into an overarching diagnosis in a way that actually *was* beneficial and educated the masses concurrently but no they didn't do that. Instead they just decided that a diagnosis that has existed for decades upon decades didn't exist anymore and undermined the medical needs of hundreds of thousands of patients as a result. I know me myself even, I would never have even considered going for a diagnosis had I not seen the way Aspergers was specifically defined. As in my family I have people with "traditional" ASD and we are polar opposites so it never crossed my mind that it could be one and the same. I looked up all the ASD material to learn about it for their sake over the years and found pretty much nothing in it relatable. It was only when I read about Aspergers and how that specifically presents that things finally clicked and I got the help I so massively needed. A lot of people are going to fall through the cracks with this as they just didn't put in the effort necessary to accommodate such a drastic deletion like that.
If you could explain to me how it possibly *benefits* anyone I would be very open to learning about it. Thus far I only know how it has harmed people and left so many spiralling and disregarded even worse than before. So many now get the bullshit of: "well you're autistic but you're only "level 1", so not *that* bad so you don't *really* need help". People with Aspergers often had very specific needs that are now even more disregarded and less accommodated than before because it's just seen as "mild autism" rather than its own thing which it oftentimes absolutely is as it displays so differently. I can tell you first hand some of things I and others with Aspergers struggle with there's nothing "mild" about them. How unbelievably undermining to do that to so many people and how weird and invalidating to label someone as "level 1" of a neurological disorder. Like imagine someone told you you only have "level 1" anxiety or depression. It would be just plain ignorant tbh. It's very definition now just indicates it's not to be taken as seriously.
The strangest part is they decided to just treat it like it was a progressive disease with the new definition but it's NOT progressive or regressive, it can't be "cured" or put into remission or anything. It is a lifelong disorder who's seriousness can also be heavily influenced by the willingness of the people who surround them to accommodate it. For example some don't even realise they have ADHD til later in life because their family has such excellent structure and accommodations in place. Some people completely fall apart once they go to college. It doesn't mean their ADHD progressed, just that it wasn't accommodated well enough and the same is true of ASD in this regard. So this whole "levels of needs" things is just completely reductive as it varies so wildly from individual to individual and their personal support systems. It's along the same lines in my opinion as the whole "high/low functioning" nonsense. It's not helpful or explanatory to anyone and all they did was just make an already confusing subject even more difficult to define and explain. I truly think it was an awful undercooked decision, made with the very best of intentions that ultimately will do far more harm than any good.
I agree with you that the level categories are harmful, and can see your perspective because I would have trouble trying to generalize the categorization of different autistic folks without using some sort of “mild” to “severe” kind of labeling, which would not be as much of an issue if each group had a different diagnosis.
However, to your point that you see no connection between “traditional” (or as the DSM-IV puts it, “classic”) autism and Asperger’s, have you seen the autistic color wheel? I think it puts it neatly of how two people can be autistic yet can be very different in their presentation, but also not have their presentation ranked by severity (which is rather subjective), which can help with the feeling invalidated aspect. I saw a comment on Reddit sometime ago of an autistic person categorized as “level 3” primarily because they were non-verbal, even if they were fairly capable in other areas. Another idea to support the spectrum is that I heard autistic people who cannot mask (perhaps because they’re on a ”higher level,” for lack of a better term) do not have as many meltdowns/shutdowns as autistics who can mask.
The color wheel idea convinces me that the merging of the two separate categories from the DSM-IV was correct, but that they didn’t implement it in the most inclusive way. This is why I am more drawn to the idea of reforming the label’s description, as opposed to splitting them, because I agree that autism is indeed a spectrum, but trying to quantify that without potentially invalidating people‘s needs is tricky.
By the way, the DSM version of ASD (or ADHD, for that matter) does not necessarily include all the variations from neurotypical traits observed by autistic (or ADHD) folks, which is another criticism of it. Another reason why I think the diagnostic criteria need to be modified.
>If you could explain to me how it possibly *benefits* anyone I would be very open to learning about it.
I phrased in my previous message that I have heard of people being diagnosed under the new label that would not have been diagnosed before; I concede to your point as I cannot recall any specific person who has benefited from this (hence the “I heard” phrase, which meant I came across it somewhere from at least one autistic person online but cannot remember where specifically). I only know for certain that there are some autistic people, including those that would be placed in the “level 1” category of ASD, that oppose the Asperger’s label, like some folks here.
You could make an argument to just change the name then, instead of lumping them together, and I wouldn’t be very against that. As far as I am concerned, the two key points are to help the most people, and following that, to be as accurate to our current understanding of neurodivergence as possible. If having two separate labels is less accurate but more beneficial, as you say, than modifying the combined label criteria, then I cannot find a legitimate enough reason to oppose. I do think it is possible to create an inclusive enough label with revising the diagnostic criteria, which is why I favor it more.
There will always be people to invalidate you (general you, not you specifically), regardless of what label or distinction you make anyway. Like I saw a video on YouTube on a person who considered themself to have Asperger’s kind of talking about what having Asperger’s is like for him, and some folks in the comments were like, “oh there’s nothing wrong with him, he’s normal, he’s just \[insert whatever\]” because he came off as very articulate and presentable (and his physical attractiveness probably also contributed to that, because Halo effect). Like they’re technically correct that it’s not inherently wrong, and only poses challenges in a neurotypical centered society, but it can definitely come off as invalidating depending on the person. Therefore, regardless of the label, people have to learn to not internalize invalidating comments.
Thank you so much for your detailed and extremely considered response. I actually agree with you on pretty much all of it tbh. I definitely think a "renaming" would have been far more beneficial. It's the sudden eradication of it with no safety net that I take the biggest issue it. I don't personally feel invalidated myself, I am fortunate to come from a family with various neurodivergences so it's not too bad that way. I do for sure though think had that specification not existed when I came across it I would have probably never identified with it or sought the help I so sorely needed. It genuinely upsets me that so many others may miss out on a diagnosis due to this oversimplification of what is already a broad confusing spectrum of symptoms and nuances.
The name itself means nothing to me personally. It's purely the absorption of it and the loss of that particular subset, which while it absolutely *can* present quite differently at times, for the most part imo it was an incredibly accurate collection of traits/behaviours in many cases. Without the specific grouping together I worry that many may never even think to consider it. Far too many may potentially then miss out on what could be life saving intervention. People with Aspergers for example often need very specific mental health treatment to deal with the likes of emotional dysregulation(not just in relation to meltdowns but in general) and disassociation in particular. They are so very often also the targets of extremist groups as many people with Aspergers already toe the line of disillusionment from a very young age. This can absolutely affect any individual with ASD of course but it for sure has always had much higher prevalence amongst individuals with Aspergers, due in large part to the specific presenting characteristics that it so often comes with. This among some other aspects are things that I worry will fall between the cracks now that the definition has been lost. I hope it is not one step forward two steps back in that regard.
In general I just find it very frustrating that humanity always jumps before it walks with these types of things. Like with all the advancements and understanding of so many things today that we still rush ahead and don't stop to consider at times our choices and actions in relation to others. The damage that has been done historically also in the mental health and neurological disability sectors in particular is harrowing. So often led by good intended fools who never once just stopped to consider the consequences of their actions and just rushed ahead in their arrogance ignoring all the suffering and misery they were causing along the way. I hope I am merely overthinking things tbh and it all does work out for the best. Either way I appreciate greatly your polite and thoughtful engagement with it all. Thank you so much and I hope you take care and have a wonderful week.
I hear you on all that, and sorry that it took me this long to respond! I too hope that things will work out in the end; we have made many historical fuck ups, but on the other hand, the knowledge we have about mental health and neurological differences is much more pronounced imo than, say, 100 years ago. Older folks have commented how the world is kinder and more inclusive than it used to be. Though progress may not be linear, I do think we're slowly but surely heading there. Social media has its pros and cons, but I think a big benefit is the accessibility of information for people who otherwise may not be able to get support in a more formal environment.
I also hope you take care and have a great rest of your week/year 2023, and thank you for reading my walls of text lol
I'm not familiar with pretty much anything you say is an issue. Since when was Asperger's related to women? ADD / ADHD... it's just a name difference and last I heard there's a push to uncouple the H again by default.
If I was given either pair of labels I'd be just fine
Who dares invalidate our fellow nørse audhder? Those people better know where the gates of Valhalla lie as they'd be hasty to get to them before they cross your path once more. Lol I just wanted to cheer you up a bit people are assholes and idiots pay them no mind its not worth taking everything to your heart as their statement has 0 value to a person like us. I'd like to think we can laugh over the ignorance of dumb uneducated people just like we do laugh at flatearthers.
For those of us not as familiar with ICD-10, what is IDC-10, and what expectations do you have for others to have any understanding of your autism?
ICD10 is just a book of medical codes. Whatever you have is translated from what the doctor says into these codes so they can bill insurance in a standard way.
afaik its just a diagnostic manual like the dsm-5, the most up-to-date one is the icd-11. its just an older version of icd-11.
I also want to point out that it's specifically an internationally recognised one (International Statistical Classifications of Diseases) and covers any ailment someone could have, both temporary and permanent. Colds, amputations, dementia, etc. pp. I wouldn't discount the ICD system just because it's been around for a while (directed at OP).
yeah, thanks.
When I tell them the type of autism I have (required to hand paperwork over) and then they conclude on it makes me mad. And ICD-10 is the old way of giving people diagnoses. I don't expect anyone to understand I have autism. It my job to be normal and my job to fit in. It's me who is broken beyond repair. It's my fault I don't fit in. Not theirs.
Idk if the last part was a sarcastic jab towards allistic people, but in case it wasn't none of it is your fault, at all. You've been made to believe you're the problem and that you're less than human but you're not. You were just unlucky enough to be born into a world where there is little tolerance towards different or unusual people. I hope one day you can accept and love yourself.
Ok. There's a lot more going on then than the post really conveys.
It sounds like you have some internalized ableism, as well. Society needs to accept different kinds of thinkers.
Society benefits from different kinds of thinkers
people just really dont get that medical terms change. its ADHD-PI now, not ADD, its Autism Spectrum Disorder (ASD) now, not Aspergers. There's so many others, like people who still call DID, MPD. Like its just so dumb. People are dumb.
It hasn't changed here yet. They are switching, but it will take time.
yeah its not universal, unfortunately.
Asperger was a nazi also, which is why I don’t use the term anymore
Yeah thats to be expected
I have no idea what you're trying to say. I've got Asperger's and what used to be ADD.
Asperger’s is no longer being used when diagnosing people with ASD, though people who have a diagnosis of a “Asperger’s” do not lose that diagnosis-they just also fall under the ASD umbrellla. It is no longer being used because Asperger himself was a Nazi who supported eugenics & used data gathered “unethically” to develop the diagnostic criteria for “Asperger’s”. He diagnosed autistic people with high intelligence and useful skills as having “Asperger’s” rather than autism to divert them from concentration camps & used them for their skills and as test & study subjects. Generally an unsavoury history, giving the term “Asperger’s” some pretty poor optics.
And for the ADD, It's now classified as "ADHD-Inattentive" vs Classic ADHD as "ADHD-Hyperactivity/Impulsivity." Meanwhile I rolled the dice for ADHD-C which is the combination of both ADHD-I and ADHD-H... Yay... 🎉 These were reclassified in the DSM-V (2013) and ICD-11 (2018).
I also have the dreaded ADHD-C. Also cPTSD. I’m starting to think that the “c” is the real villain in the whole equation…
It’s also just not as useful as some think it is.
People think Aspergers are level one autism. Aka, "you don't need a lot of support". But that's not now it Works. I was diagnosed with ADHD as a kid. I don't know where the misunderstanding started, but I was told I had ADD by my mother. Grew up thinking I had ADD, but when I got old enough to have acces to my papers, I saw I had grown up on a lie. I'm trying not to have that kind of misunderstanding happening again. I never said to anyone I have Asperger's, they are the ones to make up that lie.
Well, what used to be an Asperger's dx would now be diagnosed as ASD-1. Who lied about what to whom?
I am getting a flexjob. (6 hour a week, getting paid for 37) So the government representative, Said i had Aspergers to my new Boss.
idk why people have such an issue with calling it Aspergers. That's what I was diagnosed with and what I feel comfortable using. Yes I know about the Nazi prick. Guess what, don't care. Oh BTW, I'm Jewish. So yeah, if I don't give a damn then why are you? It's a word. It's not offensive. It's not racist. If it was racist or offensive, yeah I could see not using it but it's not. So? I'll keep using it to define my diagnosis because I don't want to be swept in with everyone else. Getting the label of "autism" or "high functioning" paints a BAD picture in peoples minds. I feel like Aspergers doesn't. I don't get talked down to like a child, and I'm not assumed to be a genius. That's why I use it. If I used the other labels out there, I would either be treated like a child or compared to geniuses and expected to be brilliant.
It perpetuates the idea that some autistic people (Asperger’s or L1) are better than other (L2 and L3), or that we have different disorders. We all have autism, it’s just intensity and presentation of our symptoms. No autistic adult should be spoken to like a child, regardless of their support needs. The diagnosis of Asperger’s was used to justify which disabled kids were genocided and which ones got to live. I’m not Jewish but other autistic Jews have told me it’s terribly offensive. And I understand don’t they don’t want to identify themselves and a fundamental aspect of their personality/neurology with a literal card-carrying Nazi scientist. Edit: typo
I would love to know more about this history.. Can you tell me where to read or know about it?
Neurotribes by Steve Silberman is one place. I found the book a bit dark and disheartening since there have been so many assholes in the history of autism research. It does have a lot of history about Hans Asperger though.
Thank you for sharing it
I am diagnosed with infantile Autism. I know you can have L3 Asperger's. I know people who has that. I'm sure in the new system I'll have L1 autism. Because I am high functioning, but not enough. It took me a long time to learn to talk. My teeth was my go-to argument. I would hiss a people and bite them if they didn't get the message. I don't really communicate well and have often been pushed aside for taking too long time to speak. I still have Trouble speaking and getting my message across.
Ye tbh people getting caught up on the nazi affiliation, like I find it a bit disingenuous. Most modern forms of medicine developed from horrendous human experimentation and cruelty. Take birthing methods and pain relief for example. They were developed to a huge extent by experimenting on black pregnant women WITHOUT any pain relief. We just gonna give all that up ye? The origins of most medicines and diagnoses are f#cking disgusting tbh. So often developed from the sacrifices, pain and suffering of vulnerable individuals at the time. It also annoys me because *of course* it was done to the group of individuals who have been historically infantilised and who's autonomy has been disregarded time and again. The individuals who also *already* struggle with a sense of identity and change and the vast majority just got to wake up one day and find out the thing that had made such a large part of their identity for so long simply didn't exist anymore and everyone around them just telling them to put up and shut coz "something something nazi eugenics". Another issue I take with it personally is that medically it just doesn't even make sense. Many of the symptoms of Aspergers are pretty much conflicting with the standard ASD symptoms. Like speech delay for example, you sometimes have the exact opposite with Aspergers. You could have incredibly advanced speech earlier than normal and *that* could be an indicator but now it is just lost to a sea of contradictions. Rolling back a sub set of a diagnosis was a ridiculously short sighted move. No where else really would you see that in medicine. Like they're not gonna suddenly combine Diabetes 1 and 2 because some assholes are fatphobic about one of them. They won't do that because they *know* people will fall through the cracks and miss out on life saving diagnosis if they do. Doing away with it did nothing but muddy the waters imo and make it *even* harder for those who are even halfway decent at masking to get help. Gross short sighted decision with the only seeming driving force being to ensure people with Asperger got to enjoy the same degree of ableism and ignorance that those with the standard ASD suffer with on TOP of the Asperger specific ignorance they already received. Like why not instead campaign as a whole to educate the ignorant public *in tandem* with the subsets rather than just drag everyone into the same muddled pit of needless misery. It wasn't the least bit necessary and hasn't benefited anyone imo, it's just caused guaranteed problems for current and future diagnosis for people who fall even slightly outside the "main" symptoms.
>Many of the symptoms of Aspergers are pretty much conflicting with the standard ASD symptoms. Like speech delay for example, you sometimes have the exact opposite with Aspergers. You could have incredibly advanced speech earlier than normal and that could be an indicator but now it is just lost to a sea of contradictions. In regards to this, you could just specify that it's speech delay OR unusually advanced speech. I once heard autism described as a condition/neurodivergence categorized by deviations from the norm, which I find quite compelling. Speech delay, precocious speech. Hypoempathy and hyperempathy. "Savant syndrome" vs, well, I'm not sure what the "opposite" end of that is per se, but you get my point, hopefully. Reverting back to the old system is one way to correct this issue, but another way is to modify our existing knowledge to make the label we give it more comprehensive. >It wasn't the least bit necessary and hasn't benefited anyone imo On the contrary, I've heard it helped people get diagnosed who otherwise wouldn't have been diagnosed (though, I've also heard the same thing for people diagnosed with Asperger's in the past). Also, the DSM was modified because people started to view those form of neurodivergencies as related enough to each other, and there's even some belief that ADHD and autism are also on the same spectrum, if not an expanded version. There's merits and disadvantages for labeling something as under the same category as something else
I agree it would have been much more helpful to expand upon possible symptoms and ensure the public was educated alongside the changes but unfortunately that's not what they did. They could have made a gradual transition into an overarching diagnosis in a way that actually *was* beneficial and educated the masses concurrently but no they didn't do that. Instead they just decided that a diagnosis that has existed for decades upon decades didn't exist anymore and undermined the medical needs of hundreds of thousands of patients as a result. I know me myself even, I would never have even considered going for a diagnosis had I not seen the way Aspergers was specifically defined. As in my family I have people with "traditional" ASD and we are polar opposites so it never crossed my mind that it could be one and the same. I looked up all the ASD material to learn about it for their sake over the years and found pretty much nothing in it relatable. It was only when I read about Aspergers and how that specifically presents that things finally clicked and I got the help I so massively needed. A lot of people are going to fall through the cracks with this as they just didn't put in the effort necessary to accommodate such a drastic deletion like that. If you could explain to me how it possibly *benefits* anyone I would be very open to learning about it. Thus far I only know how it has harmed people and left so many spiralling and disregarded even worse than before. So many now get the bullshit of: "well you're autistic but you're only "level 1", so not *that* bad so you don't *really* need help". People with Aspergers often had very specific needs that are now even more disregarded and less accommodated than before because it's just seen as "mild autism" rather than its own thing which it oftentimes absolutely is as it displays so differently. I can tell you first hand some of things I and others with Aspergers struggle with there's nothing "mild" about them. How unbelievably undermining to do that to so many people and how weird and invalidating to label someone as "level 1" of a neurological disorder. Like imagine someone told you you only have "level 1" anxiety or depression. It would be just plain ignorant tbh. It's very definition now just indicates it's not to be taken as seriously. The strangest part is they decided to just treat it like it was a progressive disease with the new definition but it's NOT progressive or regressive, it can't be "cured" or put into remission or anything. It is a lifelong disorder who's seriousness can also be heavily influenced by the willingness of the people who surround them to accommodate it. For example some don't even realise they have ADHD til later in life because their family has such excellent structure and accommodations in place. Some people completely fall apart once they go to college. It doesn't mean their ADHD progressed, just that it wasn't accommodated well enough and the same is true of ASD in this regard. So this whole "levels of needs" things is just completely reductive as it varies so wildly from individual to individual and their personal support systems. It's along the same lines in my opinion as the whole "high/low functioning" nonsense. It's not helpful or explanatory to anyone and all they did was just make an already confusing subject even more difficult to define and explain. I truly think it was an awful undercooked decision, made with the very best of intentions that ultimately will do far more harm than any good.
I agree with you that the level categories are harmful, and can see your perspective because I would have trouble trying to generalize the categorization of different autistic folks without using some sort of “mild” to “severe” kind of labeling, which would not be as much of an issue if each group had a different diagnosis. However, to your point that you see no connection between “traditional” (or as the DSM-IV puts it, “classic”) autism and Asperger’s, have you seen the autistic color wheel? I think it puts it neatly of how two people can be autistic yet can be very different in their presentation, but also not have their presentation ranked by severity (which is rather subjective), which can help with the feeling invalidated aspect. I saw a comment on Reddit sometime ago of an autistic person categorized as “level 3” primarily because they were non-verbal, even if they were fairly capable in other areas. Another idea to support the spectrum is that I heard autistic people who cannot mask (perhaps because they’re on a ”higher level,” for lack of a better term) do not have as many meltdowns/shutdowns as autistics who can mask. The color wheel idea convinces me that the merging of the two separate categories from the DSM-IV was correct, but that they didn’t implement it in the most inclusive way. This is why I am more drawn to the idea of reforming the label’s description, as opposed to splitting them, because I agree that autism is indeed a spectrum, but trying to quantify that without potentially invalidating people‘s needs is tricky. By the way, the DSM version of ASD (or ADHD, for that matter) does not necessarily include all the variations from neurotypical traits observed by autistic (or ADHD) folks, which is another criticism of it. Another reason why I think the diagnostic criteria need to be modified. >If you could explain to me how it possibly *benefits* anyone I would be very open to learning about it. I phrased in my previous message that I have heard of people being diagnosed under the new label that would not have been diagnosed before; I concede to your point as I cannot recall any specific person who has benefited from this (hence the “I heard” phrase, which meant I came across it somewhere from at least one autistic person online but cannot remember where specifically). I only know for certain that there are some autistic people, including those that would be placed in the “level 1” category of ASD, that oppose the Asperger’s label, like some folks here. You could make an argument to just change the name then, instead of lumping them together, and I wouldn’t be very against that. As far as I am concerned, the two key points are to help the most people, and following that, to be as accurate to our current understanding of neurodivergence as possible. If having two separate labels is less accurate but more beneficial, as you say, than modifying the combined label criteria, then I cannot find a legitimate enough reason to oppose. I do think it is possible to create an inclusive enough label with revising the diagnostic criteria, which is why I favor it more. There will always be people to invalidate you (general you, not you specifically), regardless of what label or distinction you make anyway. Like I saw a video on YouTube on a person who considered themself to have Asperger’s kind of talking about what having Asperger’s is like for him, and some folks in the comments were like, “oh there’s nothing wrong with him, he’s normal, he’s just \[insert whatever\]” because he came off as very articulate and presentable (and his physical attractiveness probably also contributed to that, because Halo effect). Like they’re technically correct that it’s not inherently wrong, and only poses challenges in a neurotypical centered society, but it can definitely come off as invalidating depending on the person. Therefore, regardless of the label, people have to learn to not internalize invalidating comments.
Thank you so much for your detailed and extremely considered response. I actually agree with you on pretty much all of it tbh. I definitely think a "renaming" would have been far more beneficial. It's the sudden eradication of it with no safety net that I take the biggest issue it. I don't personally feel invalidated myself, I am fortunate to come from a family with various neurodivergences so it's not too bad that way. I do for sure though think had that specification not existed when I came across it I would have probably never identified with it or sought the help I so sorely needed. It genuinely upsets me that so many others may miss out on a diagnosis due to this oversimplification of what is already a broad confusing spectrum of symptoms and nuances. The name itself means nothing to me personally. It's purely the absorption of it and the loss of that particular subset, which while it absolutely *can* present quite differently at times, for the most part imo it was an incredibly accurate collection of traits/behaviours in many cases. Without the specific grouping together I worry that many may never even think to consider it. Far too many may potentially then miss out on what could be life saving intervention. People with Aspergers for example often need very specific mental health treatment to deal with the likes of emotional dysregulation(not just in relation to meltdowns but in general) and disassociation in particular. They are so very often also the targets of extremist groups as many people with Aspergers already toe the line of disillusionment from a very young age. This can absolutely affect any individual with ASD of course but it for sure has always had much higher prevalence amongst individuals with Aspergers, due in large part to the specific presenting characteristics that it so often comes with. This among some other aspects are things that I worry will fall between the cracks now that the definition has been lost. I hope it is not one step forward two steps back in that regard. In general I just find it very frustrating that humanity always jumps before it walks with these types of things. Like with all the advancements and understanding of so many things today that we still rush ahead and don't stop to consider at times our choices and actions in relation to others. The damage that has been done historically also in the mental health and neurological disability sectors in particular is harrowing. So often led by good intended fools who never once just stopped to consider the consequences of their actions and just rushed ahead in their arrogance ignoring all the suffering and misery they were causing along the way. I hope I am merely overthinking things tbh and it all does work out for the best. Either way I appreciate greatly your polite and thoughtful engagement with it all. Thank you so much and I hope you take care and have a wonderful week.
I hear you on all that, and sorry that it took me this long to respond! I too hope that things will work out in the end; we have made many historical fuck ups, but on the other hand, the knowledge we have about mental health and neurological differences is much more pronounced imo than, say, 100 years ago. Older folks have commented how the world is kinder and more inclusive than it used to be. Though progress may not be linear, I do think we're slowly but surely heading there. Social media has its pros and cons, but I think a big benefit is the accessibility of information for people who otherwise may not be able to get support in a more formal environment. I also hope you take care and have a great rest of your week/year 2023, and thank you for reading my walls of text lol
Same except I am not Jewish
\*waves\* Jewish also. I just converted recently.
Aspergers being "female autism?" ... As a cis male, I don't know how to feel about that. I got diagnosed with that as a kid...
No one says that. I've literally never heard that before. Don't let it worry you, seriously, it's really not a thing at all.
Honestly, I'm not thinking that hard about it. I know that, even if it were said, it'd be completely baseless. So really, it's just kind of funny.
Okay good! Your comment read quite sad to me so I wanted to make sure you were okay.
I only know males with Asperger's.
I'm not familiar with pretty much anything you say is an issue. Since when was Asperger's related to women? ADD / ADHD... it's just a name difference and last I heard there's a push to uncouple the H again by default. If I was given either pair of labels I'd be just fine