Interesting new study about the 4 types of autism

[Anonymous]

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.

My 13 year old was diagnosed 3 months ago and I have been running this through my head almost every day as I try to make sense of it, so I will share!

As an infant she was “difficult.” Had problems eating and was just always irritable. She was not one of those happy and content babies. Early to hit milestones though and very verbal. Went from having tons of friends at age 2-3 preschool to starting to struggle around 4-5 preschool. Showed a lot of hyperactivity symptoms and was dx with adhd at 5.5 in kindergarten. Had a comprehensive evaluation in which ASD was ruled out.

Super smart and in level IV AAP. Well liked by teachers and most peers although in retrospect she had issues with bossing peers around.

Went thru a phase of massive anxiety and shyness from approx 1st-3rd grade, seemed like she was doing pretty well in 4th and most of 5th. Things went far downhill right around turning 11, which was also 2 mos before she got her period (which shocked me because she’s tiny). Started having a lot of executive functioning challenges as demands grew in school, and attaching on to peers who didn’t want to be her friend. Had another evaluation and neither the Dr (nor us) mentioned ASD as a possibility. I don’t know if it was specifically screened for the way it was as part of the K evaluation.

6th grade was a nightmare socially and also tough academically, she was still doing ok but had several power struggles with teachers. Switched schools. She started to become a little counter culture for lack of a better way to put it. One thing I remember vividly from this year was at thanksgiving she just would not stop talking, and not in a good way. Monopolizing conversations across the dinner table about things no one wanted to talk about and totally missing social cues. Therapist expressed concerns that ADHD meds werent working. Made lots of changes but nothing “worked.”

7th grade dropped two long term extracurriculars she had done (and LOVED) since K. Became extremely counter culture and seemed to take pride in being “weird.” Gave tons of pushback on showering and hygiene. At this point she did not have a single friend. Meds still “weren’t working.” Her therapist suggested she had oppositional defiant disorder. Asked us to get her screened for that and a psychologist diagnosed her with it. None of these people brought up autism.

Ultimately it was her guidance counselor at school who suggested it and we got a different comprehensive evaluation from a group known to be very thorough. Was found to be on border of level 1/2 with PDA.

2 things that stick out to me:

- the part in the research about some of the gene issues not being an issue until later in life with the first group of kids resonates. I couldn’t figure out how it was possible that this was the same kid, but that makes sense now if these particular genes wouldn’t show earlier.

- I think puberty had to play a role

[Anonymous]

Anonymous wrote:

Anonymous wrote:This is pure science research. It doesn't have a direct application. But without pure science research that may feel like a "colossal waste of money," you can't develop therapies that aren't a "colossal waste of money"

It’s not “pure science.” It’s a poorly designed study leading to no benefit to actual people much less any therapies.

Pure science doesn't typically lead to "benefit to actual people" - it just advances our collective understanding.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Fifth type in my opinion. PDA along with Level 1 ASD, ADHD, and anxiety.

This is my kid. It’s such a hard type to parent. I’m at a loss regarding what to do. Any thoughts?

I wish it were recognized because it's so hard to get providers to understand our children. When someone tells me their child is PDA, I just get it. They don't have to tell me Level 1 ASD, ADHD, anxiety, OCD, gifted, NT passing but needs lots of support, etc. It would be so much easier to communicate with providers, schools, and other parents if it had the recognition it deserves. We're still walking the tight rope of lower demands, offering choices, using declarative language but also imposing logical consequences for behavior that is truly destructive or hurtful. I can appreciate the perspective of PDA podcasters, but I am really frustrated by the lack of guidance about how to impose consequences that are fair, consistent, and don't trigger the PDA response. You can't just not discipline your child. I'm very interested to see the outcome of this low-demand parenting as most of these podcasters have minor children.

I don’t think you should parent via podcast. clinicians are very well versed in oppositional behavior- it’s not like it’s some sudden unknown thing uncovered by podcasters.

I don’t parent from podcasts, but I do pick up tricks here and there. Providers here don’t recognize PDA. It’s a drive for autonomy that overrides even basic survival instincts. It stems from severe anxiety and a nervous system disorder. Rewards and tokens make it worse, not better.

Oppositional behavior is the bread and butter of child therapists. It is not some kind of unknown.

[Anonymous]

Anonymous wrote:

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.

My 13 year old was diagnosed 3 months ago and I have been running this through my head almost every day as I try to make sense of it, so I will share!

As an infant she was “difficult.” Had problems eating and was just always irritable. She was not one of those happy and content babies. Early to hit milestones though and very verbal. Went from having tons of friends at age 2-3 preschool to starting to struggle around 4-5 preschool. Showed a lot of hyperactivity symptoms and was dx with adhd at 5.5 in kindergarten. Had a comprehensive evaluation in which ASD was ruled out.

Super smart and in level IV AAP. Well liked by teachers and most peers although in retrospect she had issues with bossing peers around.

Went thru a phase of massive anxiety and shyness from approx 1st-3rd grade, seemed like she was doing pretty well in 4th and most of 5th. Things went far downhill right around turning 11, which was also 2 mos before she got her period (which shocked me because she’s tiny). Started having a lot of executive functioning challenges as demands grew in school, and attaching on to peers who didn’t want to be her friend. Had another evaluation and neither the Dr (nor us) mentioned ASD as a possibility. I don’t know if it was specifically screened for the way it was as part of the K evaluation.

6th grade was a nightmare socially and also tough academically, she was still doing ok but had several power struggles with teachers. Switched schools. She started to become a little counter culture for lack of a better way to put it. One thing I remember vividly from this year was at thanksgiving she just would not stop talking, and not in a good way. Monopolizing conversations across the dinner table about things no one wanted to talk about and totally missing social cues. Therapist expressed concerns that ADHD meds werent working. Made lots of changes but nothing “worked.”

7th grade dropped two long term extracurriculars she had done (and LOVED) since K. Became extremely counter culture and seemed to take pride in being “weird.” Gave tons of pushback on showering and hygiene. At this point she did not have a single friend. Meds still “weren’t working.” Her therapist suggested she had oppositional defiant disorder. Asked us to get her screened for that and a psychologist diagnosed her with it. None of these people brought up autism.

Ultimately it was her guidance counselor at school who suggested it and we got a different comprehensive evaluation from a group known to be very thorough. Was found to be on border of level 1/2 with PDA.

2 things that stick out to me:

- the part in the research about some of the gene issues not being an issue until later in life with the first group of kids resonates. I couldn’t figure out how it was possible that this was the same kid, but that makes sense now if these particular genes wouldn’t show earlier.

- I think puberty had to play a role

What do you mean by “gene issue?” It is really normal for adolescente to chance and rebell. You knew your dsughter had diferences from a young age.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:This is pure science research. It doesn't have a direct application. But without pure science research that may feel like a "colossal waste of money," you can't develop therapies that aren't a "colossal waste of money"

It’s not “pure science.” It’s a poorly designed study leading to no benefit to actual people much less any therapies.

Pure science doesn't typically lead to "benefit to actual people" - it just advances our collective understanding.

Nothing about this advances understanding.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:They need to bring back onset before age 3, that would solve everything.

That was the dividing line between "Asperger's" and "classic" (or Kanner) autism, wasn't it? But they did away with those categories.

My kid either the first category or the third - generally developmentally on track with a history of severe anxiety but doing well now overall with social skills and executive functioning supports outside of school and a 504 plan in school. Still young so may be hard to see all the ways she is impacted but can be considered subtle right now (though it is obvious to me).

Despite it being "subtle" no question she has been autistic since infancy. The severe anxiety became apparent at age 2.

This is also true for my kid but it wasn't diagnosed early, specifically because it didn't present with the severe communication deficits (she is hyper-verbal) or developmental delays. But she didn't potty train until age 4, she had selective mutism in PK, and she has extreme anxiety that gets read as shyness and awkwardness by teachers and others.

I think it's obvious that "mild" forms of autism are genetic and begin presenting very early on, but because these kids tend to walk and talk on time and their autistic behaviors may not be as extreme, they are less likely to be identified until later when school and social demands become more complex and it's more clear that these kids have neurodivergence.

It's also common for the co-occurring disorders to be diagnosed first -- anxiety, OCD, ADHD. I feel like I see this with girls often, far more often than with boys.

Then it’s not autism.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:This is pure science research. It doesn't have a direct application. But without pure science research that may feel like a "colossal waste of money," you can't develop therapies that aren't a "colossal waste of money"

It’s not “pure science.” It’s a poorly designed study leading to no benefit to actual people much less any therapies.

Pure science doesn't typically lead to "benefit to actual people" - it just advances our collective understanding.

Nothing about this advances understanding.

I really disagree with this. Did you read the study?

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:They need to bring back onset before age 3, that would solve everything.

That was the dividing line between "Asperger's" and "classic" (or Kanner) autism, wasn't it? But they did away with those categories.

My kid either the first category or the third - generally developmentally on track with a history of severe anxiety but doing well now overall with social skills and executive functioning supports outside of school and a 504 plan in school. Still young so may be hard to see all the ways she is impacted but can be considered subtle right now (though it is obvious to me).

Despite it being "subtle" no question she has been autistic since infancy. The severe anxiety became apparent at age 2.

This is also true for my kid but it wasn't diagnosed early, specifically because it didn't present with the severe communication deficits (she is hyper-verbal) or developmental delays. But she didn't potty train until age 4, she had selective mutism in PK, and she has extreme anxiety that gets read as shyness and awkwardness by teachers and others.

I think it's obvious that "mild" forms of autism are genetic and begin presenting very early on, but because these kids tend to walk and talk on time and their autistic behaviors may not be as extreme, they are less likely to be identified until later when school and social demands become more complex and it's more clear that these kids have neurodivergence.

It's also common for the co-occurring disorders to be diagnosed first -- anxiety, OCD, ADHD. I feel like I see this with girls often, far more often than with boys.

Then it’s not autism.

I am one of the other PP's above. The criteria for autism diagnosis does not require speech or developmental delays. Social communication is different from speech. The PP said the child had selective mutism as a young child which often co-occurs with autism and suggests severe anxiety about social communication.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Fifth type in my opinion. PDA along with Level 1 ASD, ADHD, and anxiety.

This is my kid. It’s such a hard type to parent. I’m at a loss regarding what to do. Any thoughts?

I wish it were recognized because it's so hard to get providers to understand our children. When someone tells me their child is PDA, I just get it. They don't have to tell me Level 1 ASD, ADHD, anxiety, OCD, gifted, NT passing but needs lots of support, etc. It would be so much easier to communicate with providers, schools, and other parents if it had the recognition it deserves. We're still walking the tight rope of lower demands, offering choices, using declarative language but also imposing logical consequences for behavior that is truly destructive or hurtful. I can appreciate the perspective of PDA podcasters, but I am really frustrated by the lack of guidance about how to impose consequences that are fair, consistent, and don't trigger the PDA response. You can't just not discipline your child. I'm very interested to see the outcome of this low-demand parenting as most of these podcasters have minor children.

I don’t think you should parent via podcast. clinicians are very well versed in oppositional behavior- it’s not like it’s some sudden unknown thing uncovered by podcasters.

I don’t parent from podcasts, but I do pick up tricks here and there. Providers here don’t recognize PDA. It’s a drive for autonomy that overrides even basic survival instincts. It stems from severe anxiety and a nervous system disorder. Rewards and tokens make it worse, not better.

Oppositional behavior is the bread and butter of child therapists. It is not some kind of unknown.

Different etiology. PDA is not conduct disorder. Again, you’re proving the point that’s it’s not well understood.

[Anonymous]

PDA is not a thing, is the problem when parents start making things up.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:This is pure science research. It doesn't have a direct application. But without pure science research that may feel like a "colossal waste of money," you can't develop therapies that aren't a "colossal waste of money"

It’s not “pure science.” It’s a poorly designed study leading to no benefit to actual people much less any therapies.

Pure science doesn't typically lead to "benefit to actual people" - it just advances our collective understanding.

Nothing about this advances understanding.

I really disagree with this. Did you read the study?

Yes I did. I guess it advances understanding for people who think it means that we are thisclose to gene editing for autism. For those of us who are more scientifically literate, we can see that creating random groupings of symptoms on top of an already hopelessly heterogeneous diagnosis does very little to help or inform. And, also makes me glad that I never consented to have my DS’s genetic info submitted for research.

[Anonymous]

Anonymous wrote:PDA is not a thing, is the problem when parents start making things up.

But no, this study means that PDA is genetic and we will fix it with stem cell transplants! or something like that.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Fifth type in my opinion. PDA along with Level 1 ASD, ADHD, and anxiety.

This is my kid. It’s such a hard type to parent. I’m at a loss regarding what to do. Any thoughts?

I wish it were recognized because it's so hard to get providers to understand our children. When someone tells me their child is PDA, I just get it. They don't have to tell me Level 1 ASD, ADHD, anxiety, OCD, gifted, NT passing but needs lots of support, etc. It would be so much easier to communicate with providers, schools, and other parents if it had the recognition it deserves. We're still walking the tight rope of lower demands, offering choices, using declarative language but also imposing logical consequences for behavior that is truly destructive or hurtful. I can appreciate the perspective of PDA podcasters, but I am really frustrated by the lack of guidance about how to impose consequences that are fair, consistent, and don't trigger the PDA response. You can't just not discipline your child. I'm very interested to see the outcome of this low-demand parenting as most of these podcasters have minor children.

I don’t think you should parent via podcast. clinicians are very well versed in oppositional behavior- it’s not like it’s some sudden unknown thing uncovered by podcasters.

I don’t parent from podcasts, but I do pick up tricks here and there. Providers here don’t recognize PDA. It’s a drive for autonomy that overrides even basic survival instincts. It stems from severe anxiety and a nervous system disorder. Rewards and tokens make it worse, not better.

Oppositional behavior is the bread and butter of child therapists. It is not some kind of unknown.

Different etiology. PDA is not conduct disorder. Again, you’re proving the point that’s it’s not well understood.

please enlighten us on the etiology of PDA …

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Fifth type in my opinion. PDA along with Level 1 ASD, ADHD, and anxiety.

This is my kid. It’s such a hard type to parent. I’m at a loss regarding what to do. Any thoughts?

I wish it were recognized because it's so hard to get providers to understand our children. When someone tells me their child is PDA, I just get it. They don't have to tell me Level 1 ASD, ADHD, anxiety, OCD, gifted, NT passing but needs lots of support, etc. It would be so much easier to communicate with providers, schools, and other parents if it had the recognition it deserves. We're still walking the tight rope of lower demands, offering choices, using declarative language but also imposing logical consequences for behavior that is truly destructive or hurtful. I can appreciate the perspective of PDA podcasters, but I am really frustrated by the lack of guidance about how to impose consequences that are fair, consistent, and don't trigger the PDA response. You can't just not discipline your child. I'm very interested to see the outcome of this low-demand parenting as most of these podcasters have minor children.

I don’t think you should parent via podcast. clinicians are very well versed in oppositional behavior- it’s not like it’s some sudden unknown thing uncovered by podcasters.

I don’t parent from podcasts, but I do pick up tricks here and there. Providers here don’t recognize PDA. It’s a drive for autonomy that overrides even basic survival instincts. It stems from severe anxiety and a nervous system disorder. Rewards and tokens make it worse, not better.

Oppositional behavior is the bread and butter of child therapists. It is not some kind of unknown.

Different etiology. PDA is not conduct disorder. Again, you’re proving the point that’s it’s not well understood.

please enlighten us on the etiology of PDA …

I already did above. You don’t have to agree, but parents dealing with it are really on their own. ABA is useful for so many behaviors, but can make the PDA worse. Enjoy your NT or neatly diagnosed ND child.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Fifth type in my opinion. PDA along with Level 1 ASD, ADHD, and anxiety.

This is my kid. It’s such a hard type to parent. I’m at a loss regarding what to do. Any thoughts?

I wish it were recognized because it's so hard to get providers to understand our children. When someone tells me their child is PDA, I just get it. They don't have to tell me Level 1 ASD, ADHD, anxiety, OCD, gifted, NT passing but needs lots of support, etc. It would be so much easier to communicate with providers, schools, and other parents if it had the recognition it deserves. We're still walking the tight rope of lower demands, offering choices, using declarative language but also imposing logical consequences for behavior that is truly destructive or hurtful. I can appreciate the perspective of PDA podcasters, but I am really frustrated by the lack of guidance about how to impose consequences that are fair, consistent, and don't trigger the PDA response. You can't just not discipline your child. I'm very interested to see the outcome of this low-demand parenting as most of these podcasters have minor children.

I don’t think you should parent via podcast. clinicians are very well versed in oppositional behavior- it’s not like it’s some sudden unknown thing uncovered by podcasters.

I don’t parent from podcasts, but I do pick up tricks here and there. Providers here don’t recognize PDA. It’s a drive for autonomy that overrides even basic survival instincts. It stems from severe anxiety and a nervous system disorder. Rewards and tokens make it worse, not better.

Oppositional behavior is the bread and butter of child therapists. It is not some kind of unknown.

Different etiology. PDA is not conduct disorder. Again, you’re proving the point that’s it’s not well understood.

please enlighten us on the etiology of PDA …

I already did above. You don’t have to agree, but parents dealing with it are really on their own. ABA is useful for so many behaviors, but can make the PDA worse. Enjoy your NT or neatly diagnosed ND child.

PDA is not a diagnosis.