Anyone with long-term ASD knowledge know if/how the new DSM created this phenomenon of boy autism vs girl autism? Where’s this information coming from?

Anonymous wrote:

Anonymous wrote:I'm feeling very frustrated by this "what is autism?" question right now. I have a teen DD who was always sensitive and a bit quirky, with a tendency to daydream. We had her evaluated for some mild executive function issues a few years ago and the only diagnosis she got was anxiety. She always had friends and no one ever mentioned autism. During the pandemic, after several months of social isolation, she had what I'd describe as a mental breakdown, becoming severely depressed. She has tried several meds and therapy and is now somewhat better, but she's still somewhat depressed and is now having social problems.

I've now had a couple of people suggest very strongly to me that she is autistic and that the only reason I haven't had her evaluated yet is that I'm in denial. When I mention various ways in which she doesn't fit the typical profile, I hear "autism is different in girls" and "it doesn't matter that she has always had good eye contact, doesn't have restrictive interests, is spontaneous and imaginative, doesn't mind crowds, speaks with lots of dramatic flair, writes fiction that shows a lot of insight into other people - none of that means she's not autistic." Which, OK, I accept! I get that the definition is expanding and I'm not trying to resist a diagnosis if it's the best thing for her. I'm planning to have her evaluated again in case I am genuinely missing something. I just don't really understand how it can simultaneously be true that 1) the manifestations of autism are incredibly fluid and protean, and someone can be autistic despite few obvious differences from NT people; 2) there is a basic, binary NT/ND divide and it is very important to diagnose autism because otherwise you are missing something fundamental about who your DC is. And the DSM is not helpful because the criteria are so vague and don't really specify level of severity.

I want to clarify that I'm not trying to be disingenuous, I genuinely struggle with trying to figure out what it actually means to say that someone is autistic or what new information you get from the diagnosis. When my DD was a toddler, parents were constantly told we were supposed to watch our kids like a hawk for signs of autism and rush to get early intervention if we saw anything. And I ran through all those "early signs" checklists and there was never anything of the slightest concern. But I know other parents who could say the same and their kids are now diagnosed with ASD. So were those checklists meaningless? I keep hearing that we have a different understanding of autism than we did 10 years ago, but I still haven't heard a clear articulation of how or why it has changed.

that’s a pretty insightful post especially about the inherent conflict between the need to put someone in the category, and the incredibly broad and nebulous category.

personally I would just drop it and not do further assessment. mainly that’s because and autism diagnosis for such mild cases does not actually provide any information regarding treatments. your daughter can decide for herself later. teen girl social issues are very common.

Speak for yourself. Our DD is has ASD1 and many people are surprised by the diagnosis given her many strengths, but the diagnosis has absolutely been helpful for us. The specific supports recommended for her based on the diagnosis have led to dramatic improvements at school and in social situations for behaviors that we didn't realize were because of a deficit in social communications and executive dysfunction. It's helpful to know she needs explicit social skills instruction and that this is something she'll need long term. Btw we obsessed about the checklists when she was younger too and they never flagged an issue. But the checklists are not for diagnosing. They are screening tools and don't capture every case.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I'm feeling very frustrated by this "what is autism?" question right now. I have a teen DD who was always sensitive and a bit quirky, with a tendency to daydream. We had her evaluated for some mild executive function issues a few years ago and the only diagnosis she got was anxiety. She always had friends and no one ever mentioned autism. During the pandemic, after several months of social isolation, she had what I'd describe as a mental breakdown, becoming severely depressed. She has tried several meds and therapy and is now somewhat better, but she's still somewhat depressed and is now having social problems.

I've now had a couple of people suggest very strongly to me that she is autistic and that the only reason I haven't had her evaluated yet is that I'm in denial. When I mention various ways in which she doesn't fit the typical profile, I hear "autism is different in girls" and "it doesn't matter that she has always had good eye contact, doesn't have restrictive interests, is spontaneous and imaginative, doesn't mind crowds, speaks with lots of dramatic flair, writes fiction that shows a lot of insight into other people - none of that means she's not autistic." Which, OK, I accept! I get that the definition is expanding and I'm not trying to resist a diagnosis if it's the best thing for her. I'm planning to have her evaluated again in case I am genuinely missing something. I just don't really understand how it can simultaneously be true that 1) the manifestations of autism are incredibly fluid and protean, and someone can be autistic despite few obvious differences from NT people; 2) there is a basic, binary NT/ND divide and it is very important to diagnose autism because otherwise you are missing something fundamental about who your DC is. And the DSM is not helpful because the criteria are so vague and don't really specify level of severity.

I want to clarify that I'm not trying to be disingenuous, I genuinely struggle with trying to figure out what it actually means to say that someone is autistic or what new information you get from the diagnosis. When my DD was a toddler, parents were constantly told we were supposed to watch our kids like a hawk for signs of autism and rush to get early intervention if we saw anything. And I ran through all those "early signs" checklists and there was never anything of the slightest concern. But I know other parents who could say the same and their kids are now diagnosed with ASD. So were those checklists meaningless? I keep hearing that we have a different understanding of autism than we did 10 years ago, but I still haven't heard a clear articulation of how or why it has changed.

I relate to your daughter. She sounds lovely.

I can't stand the different presentation in girls idea either.

Not sure why you can't stand this idea, considering it's a thing.

DP. Because it creates the notion that autism can be hidden and it over-medicalizes girls. Sure the presentation may be different for some girls, but the ADOS was tested on both genders.

Pp here, and exactly.

Girls just do not have as severe a presentation as boys. Period.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I'm feeling very frustrated by this "what is autism?" question right now. I have a teen DD who was always sensitive and a bit quirky, with a tendency to daydream. We had her evaluated for some mild executive function issues a few years ago and the only diagnosis she got was anxiety. She always had friends and no one ever mentioned autism. During the pandemic, after several months of social isolation, she had what I'd describe as a mental breakdown, becoming severely depressed. She has tried several meds and therapy and is now somewhat better, but she's still somewhat depressed and is now having social problems.

I've now had a couple of people suggest very strongly to me that she is autistic and that the only reason I haven't had her evaluated yet is that I'm in denial. When I mention various ways in which she doesn't fit the typical profile, I hear "autism is different in girls" and "it doesn't matter that she has always had good eye contact, doesn't have restrictive interests, is spontaneous and imaginative, doesn't mind crowds, speaks with lots of dramatic flair, writes fiction that shows a lot of insight into other people - none of that means she's not autistic." Which, OK, I accept! I get that the definition is expanding and I'm not trying to resist a diagnosis if it's the best thing for her. I'm planning to have her evaluated again in case I am genuinely missing something. I just don't really understand how it can simultaneously be true that 1) the manifestations of autism are incredibly fluid and protean, and someone can be autistic despite few obvious differences from NT people; 2) there is a basic, binary NT/ND divide and it is very important to diagnose autism because otherwise you are missing something fundamental about who your DC is. And the DSM is not helpful because the criteria are so vague and don't really specify level of severity.

I want to clarify that I'm not trying to be disingenuous, I genuinely struggle with trying to figure out what it actually means to say that someone is autistic or what new information you get from the diagnosis. When my DD was a toddler, parents were constantly told we were supposed to watch our kids like a hawk for signs of autism and rush to get early intervention if we saw anything. And I ran through all those "early signs" checklists and there was never anything of the slightest concern. But I know other parents who could say the same and their kids are now diagnosed with ASD. So were those checklists meaningless? I keep hearing that we have a different understanding of autism than we did 10 years ago, but I still haven't heard a clear articulation of how or why it has changed.

I relate to your daughter. She sounds lovely.

I can't stand the different presentation in girls idea either.

Not sure why you can't stand this idea, considering it's a thing.

DP. Because it creates the notion that autism can be hidden and it over-medicalizes girls. Sure the presentation may be different for some girls, but the ADOS was tested on both genders.

What does "over medicalize" mean? And the issue is not that it's autism undetectable by the ADOS. It's that the ADOS won't be administered if autism is not suspected. The point of understanding how autism presents in girls is so that girls do get tested for autism using the ADOS and other tests.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I'm feeling very frustrated by this "what is autism?" question right now. I have a teen DD who was always sensitive and a bit quirky, with a tendency to daydream. We had her evaluated for some mild executive function issues a few years ago and the only diagnosis she got was anxiety. She always had friends and no one ever mentioned autism. During the pandemic, after several months of social isolation, she had what I'd describe as a mental breakdown, becoming severely depressed. She has tried several meds and therapy and is now somewhat better, but she's still somewhat depressed and is now having social problems.

I've now had a couple of people suggest very strongly to me that she is autistic and that the only reason I haven't had her evaluated yet is that I'm in denial. When I mention various ways in which she doesn't fit the typical profile, I hear "autism is different in girls" and "it doesn't matter that she has always had good eye contact, doesn't have restrictive interests, is spontaneous and imaginative, doesn't mind crowds, speaks with lots of dramatic flair, writes fiction that shows a lot of insight into other people - none of that means she's not autistic." Which, OK, I accept! I get that the definition is expanding and I'm not trying to resist a diagnosis if it's the best thing for her. I'm planning to have her evaluated again in case I am genuinely missing something. I just don't really understand how it can simultaneously be true that 1) the manifestations of autism are incredibly fluid and protean, and someone can be autistic despite few obvious differences from NT people; 2) there is a basic, binary NT/ND divide and it is very important to diagnose autism because otherwise you are missing something fundamental about who your DC is. And the DSM is not helpful because the criteria are so vague and don't really specify level of severity.

I want to clarify that I'm not trying to be disingenuous, I genuinely struggle with trying to figure out what it actually means to say that someone is autistic or what new information you get from the diagnosis. When my DD was a toddler, parents were constantly told we were supposed to watch our kids like a hawk for signs of autism and rush to get early intervention if we saw anything. And I ran through all those "early signs" checklists and there was never anything of the slightest concern. But I know other parents who could say the same and their kids are now diagnosed with ASD. So were those checklists meaningless? I keep hearing that we have a different understanding of autism than we did 10 years ago, but I still haven't heard a clear articulation of how or why it has changed.

I relate to your daughter. She sounds lovely.

I can't stand the different presentation in girls idea either.

Not sure why you can't stand this idea, considering it's a thing.

DP. Because it creates the notion that autism can be hidden and it over-medicalizes girls. Sure the presentation may be different for some girls, but the ADOS was tested on both genders.

As the mom of a girl child who eluded dx until age 4.5-and who is unquestionably autistic and the ADOS supported that when she finally got a neuropysch-my struggle was getting to the point of dx. If a 3 year old boy is non verbal, that gets noticed. If a 3 year old girl is nonverbal, she's 'just a shy girl'. No, she was nonverbal! That's just one example.

Anonymous wrote:I would encourage you to read Saving Normal by Dr Allen Frances. A really interesting look at the DSM from an insider and the regret he has over the ASD and ADHD diagnostic categories.

https://www.amazon.com/Saving-Normal-Out-Control-Medicalization/dp/0062229265?nodl=1&dplnkId=4ea1637b-a9fd-4888-9f2d-3e9fb3ed143a

I’ll check it out. Thanks!

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I'm feeling very frustrated by this "what is autism?" question right now. I have a teen DD who was always sensitive and a bit quirky, with a tendency to daydream. We had her evaluated for some mild executive function issues a few years ago and the only diagnosis she got was anxiety. She always had friends and no one ever mentioned autism. During the pandemic, after several months of social isolation, she had what I'd describe as a mental breakdown, becoming severely depressed. She has tried several meds and therapy and is now somewhat better, but she's still somewhat depressed and is now having social problems.

I've now had a couple of people suggest very strongly to me that she is autistic and that the only reason I haven't had her evaluated yet is that I'm in denial. When I mention various ways in which she doesn't fit the typical profile, I hear "autism is different in girls" and "it doesn't matter that she has always had good eye contact, doesn't have restrictive interests, is spontaneous and imaginative, doesn't mind crowds, speaks with lots of dramatic flair, writes fiction that shows a lot of insight into other people - none of that means she's not autistic." Which, OK, I accept! I get that the definition is expanding and I'm not trying to resist a diagnosis if it's the best thing for her. I'm planning to have her evaluated again in case I am genuinely missing something. I just don't really understand how it can simultaneously be true that 1) the manifestations of autism are incredibly fluid and protean, and someone can be autistic despite few obvious differences from NT people; 2) there is a basic, binary NT/ND divide and it is very important to diagnose autism because otherwise you are missing something fundamental about who your DC is. And the DSM is not helpful because the criteria are so vague and don't really specify level of severity.

I want to clarify that I'm not trying to be disingenuous, I genuinely struggle with trying to figure out what it actually means to say that someone is autistic or what new information you get from the diagnosis. When my DD was a toddler, parents were constantly told we were supposed to watch our kids like a hawk for signs of autism and rush to get early intervention if we saw anything. And I ran through all those "early signs" checklists and there was never anything of the slightest concern. But I know other parents who could say the same and their kids are now diagnosed with ASD. So were those checklists meaningless? I keep hearing that we have a different understanding of autism than we did 10 years ago, but I still haven't heard a clear articulation of how or why it has changed.

I relate to your daughter. She sounds lovely.

I can't stand the different presentation in girls idea either.

Not sure why you can't stand this idea, considering it's a thing.

DP. Because it creates the notion that autism can be hidden and it over-medicalizes girls. Sure the presentation may be different for some girls, but the ADOS was tested on both genders.

I would encourage you to read Saving Normal by Dr Allen Frances. A really interesting look at the DSM from an insider and the regret he has over the ASD and ADHD diagnostic categories.

https://www.amazon.com/Saving-Normal-Out-Control-Medicalization/dp/0062229265?nodl=1&dplnkId=4ea1637b-a9fd-4888-9f2d-3e9fb3ed143a

Anonymous wrote:

Anonymous wrote:I'm feeling very frustrated by this "what is autism?" question right now. I have a teen DD who was always sensitive and a bit quirky, with a tendency to daydream. We had her evaluated for some mild executive function issues a few years ago and the only diagnosis she got was anxiety. She always had friends and no one ever mentioned autism. During the pandemic, after several months of social isolation, she had what I'd describe as a mental breakdown, becoming severely depressed. She has tried several meds and therapy and is now somewhat better, but she's still somewhat depressed and is now having social problems.

I've now had a couple of people suggest very strongly to me that she is autistic and that the only reason I haven't had her evaluated yet is that I'm in denial. When I mention various ways in which she doesn't fit the typical profile, I hear "autism is different in girls" and "it doesn't matter that she has always had good eye contact, doesn't have restrictive interests, is spontaneous and imaginative, doesn't mind crowds, speaks with lots of dramatic flair, writes fiction that shows a lot of insight into other people - none of that means she's not autistic." Which, OK, I accept! I get that the definition is expanding and I'm not trying to resist a diagnosis if it's the best thing for her. I'm planning to have her evaluated again in case I am genuinely missing something. I just don't really understand how it can simultaneously be true that 1) the manifestations of autism are incredibly fluid and protean, and someone can be autistic despite few obvious differences from NT people; 2) there is a basic, binary NT/ND divide and it is very important to diagnose autism because otherwise you are missing something fundamental about who your DC is. And the DSM is not helpful because the criteria are so vague and don't really specify level of severity.

I want to clarify that I'm not trying to be disingenuous, I genuinely struggle with trying to figure out what it actually means to say that someone is autistic or what new information you get from the diagnosis. When my DD was a toddler, parents were constantly told we were supposed to watch our kids like a hawk for signs of autism and rush to get early intervention if we saw anything. And I ran through all those "early signs" checklists and there was never anything of the slightest concern. But I know other parents who could say the same and their kids are now diagnosed with ASD. So were those checklists meaningless? I keep hearing that we have a different understanding of autism than we did 10 years ago, but I still haven't heard a clear articulation of how or why it has changed.

I relate to your daughter. She sounds lovely.

I can't stand the different presentation in girls idea either.

Not sure why you can't stand this idea, considering it's a thing.

Anonymous wrote:I'm feeling very frustrated by this "what is autism?" question right now. I have a teen DD who was always sensitive and a bit quirky, with a tendency to daydream. We had her evaluated for some mild executive function issues a few years ago and the only diagnosis she got was anxiety. She always had friends and no one ever mentioned autism. During the pandemic, after several months of social isolation, she had what I'd describe as a mental breakdown, becoming severely depressed. She has tried several meds and therapy and is now somewhat better, but she's still somewhat depressed and is now having social problems.

I've now had a couple of people suggest very strongly to me that she is autistic and that the only reason I haven't had her evaluated yet is that I'm in denial. When I mention various ways in which she doesn't fit the typical profile, I hear "autism is different in girls" and "it doesn't matter that she has always had good eye contact, doesn't have restrictive interests, is spontaneous and imaginative, doesn't mind crowds, speaks with lots of dramatic flair, writes fiction that shows a lot of insight into other people - none of that means she's not autistic." Which, OK, I accept! I get that the definition is expanding and I'm not trying to resist a diagnosis if it's the best thing for her. I'm planning to have her evaluated again in case I am genuinely missing something. I just don't really understand how it can simultaneously be true that 1) the manifestations of autism are incredibly fluid and protean, and someone can be autistic despite few obvious differences from NT people; 2) there is a basic, binary NT/ND divide and it is very important to diagnose autism because otherwise you are missing something fundamental about who your DC is. And the DSM is not helpful because the criteria are so vague and don't really specify level of severity.

I want to clarify that I'm not trying to be disingenuous, I genuinely struggle with trying to figure out what it actually means to say that someone is autistic or what new information you get from the diagnosis. When my DD was a toddler, parents were constantly told we were supposed to watch our kids like a hawk for signs of autism and rush to get early intervention if we saw anything. And I ran through all those "early signs" checklists and there was never anything of the slightest concern. But I know other parents who could say the same and their kids are now diagnosed with ASD. So were those checklists meaningless? I keep hearing that we have a different understanding of autism than we did 10 years ago, but I still haven't heard a clear articulation of how or why it has changed.

that’s a pretty insightful post especially about the inherent conflict between the need to put someone in the category, and the incredibly broad and nebulous category.

personally I would just drop it and not do further assessment. mainly that’s because and autism diagnosis for such mild cases does not actually provide any information regarding treatments. your daughter can decide for herself later. teen girl social issues are very common.

Anonymous wrote:I'm feeling very frustrated by this "what is autism?" question right now. I have a teen DD who was always sensitive and a bit quirky, with a tendency to daydream. We had her evaluated for some mild executive function issues a few years ago and the only diagnosis she got was anxiety. She always had friends and no one ever mentioned autism. During the pandemic, after several months of social isolation, she had what I'd describe as a mental breakdown, becoming severely depressed. She has tried several meds and therapy and is now somewhat better, but she's still somewhat depressed and is now having social problems.

I've now had a couple of people suggest very strongly to me that she is autistic and that the only reason I haven't had her evaluated yet is that I'm in denial. When I mention various ways in which she doesn't fit the typical profile, I hear "autism is different in girls" and "it doesn't matter that she has always had good eye contact, doesn't have restrictive interests, is spontaneous and imaginative, doesn't mind crowds, speaks with lots of dramatic flair, writes fiction that shows a lot of insight into other people - none of that means she's not autistic." Which, OK, I accept! I get that the definition is expanding and I'm not trying to resist a diagnosis if it's the best thing for her. I'm planning to have her evaluated again in case I am genuinely missing something. I just don't really understand how it can simultaneously be true that 1) the manifestations of autism are incredibly fluid and protean, and someone can be autistic despite few obvious differences from NT people; 2) there is a basic, binary NT/ND divide and it is very important to diagnose autism because otherwise you are missing something fundamental about who your DC is. And the DSM is not helpful because the criteria are so vague and don't really specify level of severity.

I want to clarify that I'm not trying to be disingenuous, I genuinely struggle with trying to figure out what it actually means to say that someone is autistic or what new information you get from the diagnosis. When my DD was a toddler, parents were constantly told we were supposed to watch our kids like a hawk for signs of autism and rush to get early intervention if we saw anything. And I ran through all those "early signs" checklists and there was never anything of the slightest concern. But I know other parents who could say the same and their kids are now diagnosed with ASD. So were those checklists meaningless? I keep hearing that we have a different understanding of autism than we did 10 years ago, but I still haven't heard a clear articulation of how or why it has changed.

I relate to your daughter. She sounds lovely.

I can't stand the different presentation in girls idea either.

I'm feeling very frustrated by this "what is autism?" question right now. I have a teen DD who was always sensitive and a bit quirky, with a tendency to daydream. We had her evaluated for some mild executive function issues a few years ago and the only diagnosis she got was anxiety. She always had friends and no one ever mentioned autism. During the pandemic, after several months of social isolation, she had what I'd describe as a mental breakdown, becoming severely depressed. She has tried several meds and therapy and is now somewhat better, but she's still somewhat depressed and is now having social problems.

I've now had a couple of people suggest very strongly to me that she is autistic and that the only reason I haven't had her evaluated yet is that I'm in denial. When I mention various ways in which she doesn't fit the typical profile, I hear "autism is different in girls" and "it doesn't matter that she has always had good eye contact, doesn't have restrictive interests, is spontaneous and imaginative, doesn't mind crowds, speaks with lots of dramatic flair, writes fiction that shows a lot of insight into other people - none of that means she's not autistic." Which, OK, I accept! I get that the definition is expanding and I'm not trying to resist a diagnosis if it's the best thing for her. I'm planning to have her evaluated again in case I am genuinely missing something. I just don't really understand how it can simultaneously be true that 1) the manifestations of autism are incredibly fluid and protean, and someone can be autistic despite few obvious differences from NT people; 2) there is a basic, binary NT/ND divide and it is very important to diagnose autism because otherwise you are missing something fundamental about who your DC is. And the DSM is not helpful because the criteria are so vague and don't really specify level of severity.

I want to clarify that I'm not trying to be disingenuous, I genuinely struggle with trying to figure out what it actually means to say that someone is autistic or what new information you get from the diagnosis. When my DD was a toddler, parents were constantly told we were supposed to watch our kids like a hawk for signs of autism and rush to get early intervention if we saw anything. And I ran through all those "early signs" checklists and there was never anything of the slightest concern. But I know other parents who could say the same and their kids are now diagnosed with ASD. So were those checklists meaningless? I keep hearing that we have a different understanding of autism than we did 10 years ago, but I still haven't heard a clear articulation of how or why it has changed.

I think there is going to be a watershed moment in psychiatry within the next 10-20 years that changes everything. Certainly the DSM. Most likely will arise out of research related to cellular biology (if you have read Chris Palmer's Brain Energy you know what I mean).

At least I really hope so. Psych is in the dark ages. FWIW, my interest is in mood disorders, not ASD, which is a little different and skews my perspective.

But yeah, the DSM will either change significantly or disappear altogether soon enough -- if the research that should get done gets done (which is, unfortunately, a big if--big pharma drives psych research, which is good for no one but big pharma).

Regarding the article posted above I’ve never heard that before, nobody I knew had difficulty telling them apart if you looked at full case profiles. Sure if you just looked at them in a classroom in elementary school and beyond you might not know right off but they had very distinct diagnostic criteria.

https://www.autismsocietyofindiana.org/dsm-iv-diagnostic-classifications/

ASD diagnostic criteria was much more clear in DSM IV (6 total, 1 from this category, had to be present before age 3, etc). I still don’t understand their full reasoning for the change as they don’t link their study in the article. I’d like to know when it was done, if it was after the insurance mandate started in the late 00’s then I’d speculate it makes sense why people would be trying to push for ASD and not Asperger’s- I don’t recall Asperger’s being commonly covered by insurance, though I could be wrong (I also can’t recall how PDD NOS was viewed by those early insurance carriers, be interesting to see if there’s a connection).

I do think diagnostic changes along with insurance created a push/need for using the ADOS and other standardized testing, which used to be more secondary/less necessary than a combination of behavioral and developmental assessments (interestingly enough the person in your article from above that had a hand in changing the diagnostic criteria also helped create the ADOS).

I think getting rid of PDD-NOS was not useful either (though it could have been better expanded into it’s own criteria, separate from SCD-see below). It was very good for early diagnostics when you didn’t actually know what was going in. Often times children at say 18 months are not testable due to so many problem behaviors, lack of attending, etc so they’d get PDD-NOS until further intervention and development could take place. PDD NOS often times would be changed to ASD or something else or dropped all together. It was also a placeholder for older kids just like it was for younger kids. So if a child received that diagnosis at age 4/5 it indicated to me this child might have ASD/ADHD or something else but again the problem behaviors, attending, etc were interfering so much it was difficult to tease out the problem.

It’s interesting that the article compares social classes, I can see how that could play out. If you have more money you’d be more likely to have gotten an early PDD NOS diagnosis, intervention is applied, more assessments and information applied, you get a more clear diagnosis at a younger age. If you didn’t have the money you’d probably not be able to seek help until the child was flagged by the school, you’d get a PDD NOS diagnosis to satisfy the school and may or may not have the resources to get intervention, more testing, and eventually a clearer diagnosis.

While I can appreciate the class distinction, comparing PDD NOS as a whole diagnosis to Asperger’s diagnosis as a reason for elimination was detrimental imo. Of course if you have a thorough evaluation vs just a doctor writing a script you’ll get a more succinct diagnosis like Asperger’s vs PDD NOS. PDD NOS was never really meant to be a stand-alone diagnosis in the DSM IV, so that could have been expanded to meet the actual reasons doctors were using it.

I think their study made it clear (in theory, I haven’t read the study) that having increased access to early diagnostics/intervention is important for obtaining a clear diagnosis, but instead of just saying that they completely eliminated the very diagnosis that was commonly used to get access to those interventions. It just doesn’t make any sense. There has to be more to this that I’m not understanding…

Apparently they have since changed PDD NOS to SCD, which doesn’t actually make sense to me either (none of the changes do) because it aligns more to part 1 of DSM-IV Asperger’s.

Regardless I do like the SCD diagnostic criteria. It seems some combination of ADHD/ASD/Anxiety has taken the place of Asperger’s, when SCD actually fits quite well. I’m not sure why it’s not more utilized.

https://www.autismalert.org/uploads/PDF/INFO--DSM%205%20Diagnostic%20Criteria.pdf

Whatever the reasons for all these changes I certainly don’t think it did any children or caregivers any favors. We will get to a point where these diagnoses mean very little and you’ll need extensive testing to figure out what’s actually going on because the diagnosis alone will be almost useless.

Anonymous wrote:The biggest differences between Asperger’s and ASD used to be age of onset and deficit areas.

When you combine 2 things (as they did by making Asperger’s into ASD Level 1) that don’t really look the same you end up with something that means nothing.

These are from the old DSM-IV for Asperger’s, and certainly don’t fit the “traditional criteria” for ASD. I still can’t figure out why they combined these once very distinct diagnoses (besides insurance money):

There is no clinically significant general delay in language (e.g., single words used by age 2 years, communicative phrases used by age 3 years).

There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, or adaptive
behavior (other than social interaction and curiosity about the environment in childhood).

I thought they combined them because the distinction wasn't really valid - the same kid would be diagnosed with Aspergers by one person and autism by another.

"Why Combine Autism and Asperger’s?
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Why Combine Autism and Asperger’s?
Experts didn't find them different enough, but advocates aren't pleased

Writer: Bryan King, MD

Clinical Expert: Bryan King, MD

When the DSM-5 was released in 2013, Asperger’s and PDD-NOS were eliminated as separate conditions that children could be diagnosed with. The criteria for an autism diagnosis also changed.

The new criteria collapsed what were three separate categories of behaviors into two: persistent deficits in social communication and social interaction, and restricted, repetitive patterns of behavior. They also reduce the number of symptoms within each category while increasing the number required fordiagnosis, effectively limiting the “menu” and, to critics, making the diagnosis more restrictive.

Others argue that any fall off in diagnosis should be very modest, or perhaps diagnoses might even increase under the DSM-5 criteria. Many experts have said the revisions are not at all intended to kick people off the spectrum, but rather fine-tune the diagnosis so it is more useful and representative of data gathered over the past 20 years.

Reaction from the Asperger’s community

This uncertainty—the real sense that investigators are figuring out the new diagnosis as they go—does not sit well with some members of the very passionate community of parents of children with Asperger’s and adult Aspies themselves. The diagnosis is the basis for important treatment like applied behavioral analysis and school services. “As a parent of a child who is diagnosed with high functioning autism the possibility of losing his designation overwhelms me,” one parent wrote in the Times comments section. “Monsters. Pure and simple,” quipped another commenter. From another parent: “These ‘experts’ need to take a step back and look at whose life they are about to change!” Many also worry that removing the Asperger’s diagnosis will seriously impact the sense of identity of some in the autism community even if does not result in reduced services.

Catherine Lord, PhD, a member of the task force that revised the diagnosis and director of Weill Cornell Medical College/ NY Presbyterian Hospital Institute for Brain Development, says the intent was not to undo the old manual. “We didn’t start out criticizing DSM-IV,” she says. “It just feels like we can move beyond it. The intention of the new criteria is to include everybody who has a carefully diagnosed ASD,” not exclude the majority of them. “That was not part of the intention and there is no evidence that that is true. There’s just none.”

The reasoning

In 2012 Robert Hendren, DO, the director of child and adolescent psychiatry at the University of California, San Francisco, said he was sad to see Asperger’s go. “At first I wondered if the APA would back down and the committee would back down on making the change,” he says. “But the first meeting they had of that committee they presented the evidence, and it’s just so strong, that you can’t make these distinctions” between Asperger’s and PDD-NOS and autism.

What is that evidence? For one, Dr. Lord conducted a study across multiple sites, with thousands of subjects, looking at the diagnostic accuracy of the DSM-IV. “Asperger’s diagnosis in the 12 sites was predicted by who saw you,” she says, a troubling result. “There was also a social class factor in a couple of sites. So upper-middle class parents got kids with Asperger’s. The same kid with the same characteristics with less educated parents ends up as PDD-NOS. This is not good.”

https://childmind.org/article/why-combine-autism-and-aspergers/