Anonymous wrote:

Anonymous wrote:These are not new categories of autism. They looked at non-core features of autism as currently diagnosed and grouped them. In the same way you wouldn’t say there are “types of depression” based on non-core criteria. Like, you could take all the people diagnosed with depression and group them based on IQ, extroversion/introversion, height, weight, etc etc. Unless you have a theory about why these grouping criteria are causal or relate to the *core symptoms* of the dx, this is a pretty useless activity.

didn’t the study find that these different groups correlated with different genetic markers?

This is the most important part of the study, IMO. We could argue about the categories (and the names of the categories) and maybe there should be 1 or 2 more categories. But this is the most interesting part of it.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I find the co-occurrence of mental health issues so interesting because I have family members who fall in different groups and that is indeed a huge difference: some are very affected developmentally but don't have the debilitating mental health issues that are characteristic of the first group.

It kind of confuses me because I thought all autistic people had anxiety.

Well—the person I’m thinking about does get very anxious when overwhelmed in a situation he doesn’t understand, but doesn’t have the kind of constant “anxiety” that seems disconnected from any obvious event that my family member in the first group has. That person is anxious most of the time, has OCD and depression too.

Fair enough. I guess I'm curious which of the categories my DD falls into because she had selective mutism as a child, but since she was treated for that she doesn't have any mental health issues that would be considered "debilitating". However she does have an "unspecified anxiety" diagnosis that the psychologist explained as being over an above the anxiety that sort of "comes with" autism and definitely has perfectionist tendencies that for example impact her willingness to try things that are hard for her.

In the study cited in the OP, the first category (Social/behavioral) they describe is more impacted by the core features of autism than other children even though they are not developmentally delayed: "We identified one class that demonstrated high scores (greater difficulties) across core autism categories of social communication and restricted and/or repetitive behaviors compared to other autistic children, as well as disruptive behavior, attention deficit and anxiety, but no reports of developmental delays; this class was named Social/behavioral (n = 1,976)." My DD is still young but I would not say she is more impacted than other autistic children. She is definitely impacted but can access the curriculum in a general ed classroom and follows classroom routines independently. So that suggests to me she is more in the "moderate" category but she does have the anxiety both currently and historically.

Anonymous wrote:For those of your with girls with late diagnoses (especially if they are social and do well in school), what are their symptoms? I think high functioning in girls is so hard to identify, I'm curious what behaviors led to a diagnosis.

They are obvious to the people who are qualified to diagnose autism.

You should check out the book "Is This Autism?" by Donna Henderson and Sarah Wayland.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I find the co-occurrence of mental health issues so interesting because I have family members who fall in different groups and that is indeed a huge difference: some are very affected developmentally but don't have the debilitating mental health issues that are characteristic of the first group.

It kind of confuses me because I thought all autistic people had anxiety.

Well—the person I’m thinking about does get very anxious when overwhelmed in a situation he doesn’t understand, but doesn’t have the kind of constant “anxiety” that seems disconnected from any obvious event that my family member in the first group has. That person is anxious most of the time, has OCD and depression too.

I consider my son to be mildly on the spectrum (though his official DX is adhd and anxiety only) and growing up had two close friends whose brothers were each profoundly disabled by autism and were non verbal. It makes a lot of sense to me that a less developmentally delayed group overall would have more occurrence of anxiety and ocd as we understand them - to me, those are higher brain functions and a way that someone with typical intelligence or a mild intellectual disability would cope with uncertainty around things that are uncomfortable or that they subconsciously know they don’t understand. I think those with more severe intellectual disability (like the people I knew) aren’t mentally capable of the planning and execution aspects of OCD.

Based on my experiences with people all over the spectrum, there is a huge difference between someone with level 1/Asperger’s (or even milder than that) and someone who is severely impaired developmentally by autism - while some of the underlying triggers (like sensory issues) may be the same, the presentation looks like two entirely different diagnoses. Personally I think the autism spectrum seems too wide - it might be more helpful to have more nuanced diagnoses and interventions.

Anonymous wrote:These are not new categories of autism. They looked at non-core features of autism as currently diagnosed and grouped them. In the same way you wouldn’t say there are “types of depression” based on non-core criteria. Like, you could take all the people diagnosed with depression and group them based on IQ, extroversion/introversion, height, weight, etc etc. Unless you have a theory about why these grouping criteria are causal or relate to the *core symptoms* of the dx, this is a pretty useless activity.

didn’t the study find that these different groups correlated with different genetic markers?

Anonymous wrote:

Anonymous wrote:I find the co-occurrence of mental health issues so interesting because I have family members who fall in different groups and that is indeed a huge difference: some are very affected developmentally but don't have the debilitating mental health issues that are characteristic of the first group.

It kind of confuses me because I thought all autistic people had anxiety.

Well—the person I’m thinking about does get very anxious when overwhelmed in a situation he doesn’t understand, but doesn’t have the kind of constant “anxiety” that seems disconnected from any obvious event that my family member in the first group has. That person is anxious most of the time, has OCD and depression too.

Anonymous wrote:These are not new categories of autism. They looked at non-core features of autism as currently diagnosed and grouped them. In the same way you wouldn’t say there are “types of depression” based on non-core criteria. Like, you could take all the people diagnosed with depression and group them based on IQ, extroversion/introversion, height, weight, etc etc. Unless you have a theory about why these grouping criteria are causal or relate to the *core symptoms* of the dx, this is a pretty useless activity.

What’s significant here is that they found different genetic markers associated with the different clinical groupings. I agree that you can group things however and it doesn’t necessarily mean much but when you find a different genetic markers associated with the different groups that suggests there’s a different etiology and maybe different treatments.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:To be fair, many pediatricians seem to be looking at developmental delays that are obvious like language, motor, etc. They aren’t really asking you if you’re two year-old plays with the same toy over and over and over and over, which may seem normal if you’ve never had children before, but later figure out That can be a sign. Many of the things looking back that may have been signs for us were brushed off as anxiety. Our child was extremely verbal and social and does very well academically so it was missed for a very long time. What was probably burn out from masking all day long was just brushed off as normal developmental tantrums at home.

We had a very similar situation but were kind of "lucky" that DD displayed a very severe type of anxiety that led us to seek services for her that eventually led to the diagnosis at age 4. That anxiety and DD's stimming as well as some repetitive play should have been enough to recommend an evaluation, but our pediatrician reassured us that DD was NT, despite only seeing DD for 15 minutes once a year. Thankfully the therapists spoke up and we got the evaluation anyway. I really think pediatricians could use more training to overcome their biases. DD is mixed race and presents more White than Brown but I imagine it is far worse for Black boys and girls.

DP, I think our late diagnosis for our DD was because her "stimming" was playing with slime for hours on end but since slime was so popular at the time, they dismissed it as a sign.

An actual ADOS assessment would have looked at much more than just a parent statement that “she plays with slime” a lot. Did she get the ADOS?

For those of your with girls with late diagnoses (especially if they are social and do well in school), what are their symptoms? I think high functioning in girls is so hard to identify, I'm curious what behaviors led to a diagnosis.

Anonymous wrote:

Anonymous wrote:To be fair, many pediatricians seem to be looking at developmental delays that are obvious like language, motor, etc. They aren’t really asking you if you’re two year-old plays with the same toy over and over and over and over, which may seem normal if you’ve never had children before, but later figure out That can be a sign. Many of the things looking back that may have been signs for us were brushed off as anxiety. Our child was extremely verbal and social and does very well academically so it was missed for a very long time. What was probably burn out from masking all day long was just brushed off as normal developmental tantrums at home.

We had a very similar situation but were kind of "lucky" that DD displayed a very severe type of anxiety that led us to seek services for her that eventually led to the diagnosis at age 4. That anxiety and DD's stimming as well as some repetitive play should have been enough to recommend an evaluation, but our pediatrician reassured us that DD was NT, despite only seeing DD for 15 minutes once a year. Thankfully the therapists spoke up and we got the evaluation anyway. I really think pediatricians could use more training to overcome their biases. DD is mixed race and presents more White than Brown but I imagine it is far worse for Black boys and girls.

DP, I think our late diagnosis for our DD was because her "stimming" was playing with slime for hours on end but since slime was so popular at the time, they dismissed it as a sign.

Anonymous wrote:

Anonymous wrote:I find the co-occurrence of mental health issues so interesting because I have family members who fall in different groups and that is indeed a huge difference: some are very affected developmentally but don't have the debilitating mental health issues that are characteristic of the first group.

It kind of confuses me because I thought all autistic people had anxiety.

Why would you think that?

It looks like my child would fall into the second category.

But his academic and social issues were due to his very poor receptive language.

Ultimately his adult Dx is Mild Intellectual Disability. That is the best "official" fit, although with a typical nonverbal IQ, he does better than many with that Dx.

As to the genetics, my receptive language is weak. Despite graduating in the top of my class, I could never understand the foreign languages I took. I could read them but follow a conversation.

Anonymous wrote:To be fair, many pediatricians seem to be looking at developmental delays that are obvious like language, motor, etc. They aren’t really asking you if you’re two year-old plays with the same toy over and over and over and over, which may seem normal if you’ve never had children before, but later figure out That can be a sign. Many of the things looking back that may have been signs for us were brushed off as anxiety. Our child was extremely verbal and social and does very well academically so it was missed for a very long time. What was probably burn out from masking all day long was just brushed off as normal developmental tantrums at home.

We had a very similar situation but were kind of "lucky" that DD displayed a very severe type of anxiety that led us to seek services for her that eventually led to the diagnosis at age 4. That anxiety and DD's stimming as well as some repetitive play should have been enough to recommend an evaluation, but our pediatrician reassured us that DD was NT, despite only seeing DD for 15 minutes once a year. Thankfully the therapists spoke up and we got the evaluation anyway. I really think pediatricians could use more training to overcome their biases. DD is mixed race and presents more White than Brown but I imagine it is far worse for Black boys and girls.

To be fair, many pediatricians seem to be looking at developmental delays that are obvious like language, motor, etc. They aren’t really asking you if you’re two year-old plays with the same toy over and over and over and over, which may seem normal if you’ve never had children before, but later figure out That can be a sign. Many of the things looking back that may have been signs for us were brushed off as anxiety. Our child was extremely verbal and social and does very well academically so it was missed for a very long time. What was probably burn out from masking all day long was just brushed off as normal developmental tantrums at home.

Anonymous wrote:I find the co-occurrence of mental health issues so interesting because I have family members who fall in different groups and that is indeed a huge difference: some are very affected developmentally but don't have the debilitating mental health issues that are characteristic of the first group.

It kind of confuses me because I thought all autistic people had anxiety.