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If you have a girl who got a late ASD diagnosis...


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In hindsight, do you see it looking back at their early childhood? In what ways? I honestly don’t see it at all when I look back. I see sensory issues with clothing and some emotional lability starting in early school years, perhaps anxiety related, and some other signs of anxiety, accelerating after puberty, but all I see in the baby and toddler years is a very smiley, interactive baby who met physical and language milestones early or on time, made eye contact and was generally a joy to be around. This dc appears autistic at this point at 18yo, acting more and more so as time goes on (she is obsessed with watching autism videos and making lists of how she fits the diagnostic criteria) and I think we’re likely headed for this diagnosis, but I can’t stop wondering how it could just “develop” when she was older, when it’s supposed to be present from before they are three. Anyone else seen this presentation in a highly intelligent girl?

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As you get older, you are thrown into more different environments and your mum isn't there to manoeuvre things the way mums do. You learn more about how unfair* life is and it tires you out. 

*The lying, the flaking, the double standards, the knowing you're never going to understand why some people get away with so much and you'll never work out how to be one of those people yourself.

 

How did she play when she was small?

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Have you looked at information specific to girls?

Off the top of my head — the Tony Atwood webpage has a section about this.  

Also, how she acted with parents and immediate family is not representative.  

Masking is also common for girls.

And a main thing is that kids compensate and keep up until they can’t anymore.  

A key thing that might have been present in younger years is interactive play with peers.  If you look at lists of what they want to present for interactive play in pre-school years, they want it to be interactive with cooperation.  Not only a leader or only a follower.  Some kids do well but are directing play of other kids.  Some do well but are only following.  These can both be early signs that are hard to see unless you know about them.  And even then, masking and compensating are possible if those are not issues.  
 

Another thing is that girls can be “easy,” not causing any problems, going along with things.  So then it’s easy not to notice — and also just not obvious.  
 

I will add “trusted caregiver” and say — it is common for kids to really do well around parents, siblings, and trusted caregivers.  It is common.  It is also common for kids to do well or be drawn to older or younger peers instead of same-age peers.  This can be because the social demands are different and easier to meet than they would be with a same-age peer.  With younger peers the demands are lower and more forgiving.  With older peers the older peer can support more of the social interaction and will also be less picky with someone younger.

Overall I think focus on reading about girls, and specifically girls who were not getting an obvious diagnosis or having obvious problems.

The “default” is often specific to boys or to certain presentations, and so it would be understandable and common not to see things in “default” information, but that could change when you are reading about girls and girls who are similar to your daughter.  


 

 

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You can also be aware — it would be likely for you to find a lot of information wrt Aspergers.

Why is this?

One, the change to DSM 5 is on the new side, and not every book is so new.

Two, it continues to be helpful as a way of being more specific.

Three, the change to “Autism Spectrum Diagnosis” is mainly a USA thing and a lot for girls comes from other countries.  

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Another thing is — I am not extremely up on this, but through three years of age gets beyond just parallel play with other kids into joint play, and this gets picky.  I would not be surprised to hear a girl did not 100% seem to meet this.  Bc — I think it’s a bit arbitrary sometimes.  Especially if there are signs from a young age.  Kids are not necessarily in group situations before they are 4.  
 

There is not an expectation of signs for a baby.  Iirc there is a baby sibs study (google baby sibs autism) and they saw high risk kids as babies and literally would see no signs in some kids until they were over a year old.  So to not see any signs as a baby is a known thing.  And these are people looking for the most subtle things.  

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Also from your op — physical milestones met is common with autism.  Language milestones — advanced vocabulary is common with Aspergers and the language delay part can be extremely picky and focused on social use of language only.  
 

Making eye contact — many kids with autism do make eye contact.  This is a common misconception.  You also might find that over time the autism category has gotten broader. It is literally not the same old “classic autism” or “autistic disorder” anymore.  That has changed over time.  
 

As far as generally being a joy to be around — also common 🙂. There’s a bit of a stereotype that parents are so surprised to hear anything mentioned bc their kids are doing great at home and they don’t see the issues that are seen in a group settings.  AND it’s also common for a child to be easygoing and not causing obvious problems while also not having the social skills that would be looked at by a picky person.  A person looking for a diagnosis would be Looking for skills. (Edit — I mean there might not be noticeable/obvious things without specifically looking for certain things.)

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https://www.socialthinking.com/Articles?name=why-social-thinking-developed-play-scale

I happen to own this book..... so, if you read this page, basically, what you should know is that the expected standard for pre-school is what this framework is calling "Shared, Cooperative, Interactive Play."  

What this means is -- very creative, complex play that is alone doesn't count.  Play that is directed or followed by one child, instead of interactive, doesn't count.  And, if kids cannot resolve differences about how they want to play, then it is not collaborative.  If there are breakdowns because one person wants to do one thing and one person wants to do something else, and it leads to them ending the play, then it is not collaborative.  

And this is the standard for pre-school, for 4- and 5-year-olds in pre-school.  

This is what I mean by being picky.  I don't mean it in a bad way.  

But it's very easy for kids to be happy and content, and not causing any problems at all, and not be playing this way.  

But this is supposed to be a standard for pre-school, to set kids up for success in group situations they enter as they get older.  

But it just doesn't mean that kids are going to look like there is a problem!  It can look like kids are making choices to do what they enjoy, and following their own interests, and independent, and other good things.  And those things are still true.  

That is just how this works.  

There are still going to be all the good qualities that kids have had all along, and many of them are extremely desirable.  None of that is taken away. 

Edit:  I actually don't know if this is pertinent to girls.  It may still be something that fits more with a different presentation than what your daughter may have.  A lot of things can just not fit with a lot of kids -- that is normal with autism.  It's not generally something where people identify with every single thing.  

Edit:  Here is a main quote from this page:

SCIP is complex play, despite how simple it may look to outsiders. It involves reading intentions, understanding shared goals, the ability to play outside any defined set of rules, being willing to go with the flow based on the desires of the group, and sustain play over time. As children acquire the ability to relate flexibly and play collaboratively, they are also learning to problem solve and learning classroom readiness skills. At school it is expected that children know how to work in a group, read the intentions of a teacher, understand that other children are sharing the same thoughts, and imagine the concepts the teacher is teaching. They need to be flexible, goal oriented, and purposeful in their actions. This also requires a strong ability to self-regulate their attention, thoughts, and actions to match the plan of the group. It’s a tall order we expect of our early learners!

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I think it's also important to point out, I don't know your history with home-schooling, but many, many kids with autism will thrive in small groups and find larger groups to be difficult.

If you provided her with small groups and protected her from over-stimulation, instead of "throwing her to the wolves," then you have probably just not seen as much as if she had gone to be in a large group of kids for 7 hours a day.  

Anxiety, if it turns out to be related to social anxiety from being around people or not knowing what the social expectations are, would totally fit, possibly.

I think when you find out more, you will either see it or you won't.

To me -- it sounds like you see it overall, but then also see there are "red flags" that you didn't see.  Well -- those red flags are not the end-all be-all.  

And one of my kids had major, major, major red flags as an infant, but then he didn't continue to have them ----- and that is a reason that autism is not diagnosed in infants.  My son who has autism did not have the "famous" red flags as an infant at all.  He has things from when he was an infant that I have found out later are very, very known but are not the famous red flags.  Well -- that is not apples to apples with your daughter because my son does have an obvious presentation of autism.  But it's just to say -- the red flags are not the end-all be-all.  And the M-CHAT (a rating scale for toddlers) actually gets pretty poor results -- it's actually surprisingly bad, compared to what you would think it would be.  That is just the way it is.  Some things are disappointing especially for the younger years.   

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I was diagnosed at 38, my daughter at 5.  She easily passed her toddler screening, and passed the preschool ADOS at three.  I insisted we try again, and she “failed” the elementary ADOS at 5 and got her diagnosis.  Her social issues were subtle enough that the earlier tests couldn’t catch them.  What did I see that made me insist on testing and retesting?  First, I was autistic and she was my mini-me, so I just had a hunch.  Lots of family members, less familiar with Autism in general and not at all familiar with Autism in highly verbal girls, didn’t see anything.  Second, she had colic, like I had as a baby.  Third, focused interests from an early age.  At two she was fixated on the color purple.  By three it was princesses.  These interests were seen as normal and age appropriate, which is fine. Autistic interests are marked by their intensity, not by their obscurity.  Fourth, she was hyper verbal.  Speaking in full sentences by 18 months.  Had an absurdly huge vocabulary.  Didn’t teach herself to read, so not hyperlexic, but definitely hyper verbal.  Fifth, couldn’t slide easily into group play the way her younger sister could.  This doesn’t mean she couldn’t play with other kids, but it was easier for her to be in charge and hard for her to be flexible.  She’s mainstreamed at school, has been invited to birthday parties, and comes across as the smart, quirky, kind of awkward seven year old that she is.  She gets speech therapy for her pragmatic language issues, which are not obvious, but are definitely there. 

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I am also probably overly sensitive to this, but it can come across sometimes to me like ----- people think kids with autism must be unlikable, only difficult, no redeeming qualities, giving their parents hell, hard to love, etc.  

That is just not true.  

I think there is still this sense of "oh, no, not autism," like it is so bad, but really -- it does not need to be that way.  

It's a pretty broad umbrella and it is fine to only look for things that are helpful and discard things that don't fit or aren't helpful.

If your daughter is trying things out -- and you don't agree -- maybe she is just trying some things out and they won't last long.  

Or maybe there are things that speak to her that you don't necessarily see, but that can be fine for her say speak to her.  I think that is okay, too.  

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4 minutes ago, Lawyer&Mom said:

I was diagnosed at 38, my daughter at 5.  She easily passed her toddler screening, and passed the preschool ADOS at three.  I insisted we try again, and she “failed” the elementary ADOS at 5 and got her diagnosis.  Her social issues were subtle enough that the earlier tests couldn’t catch them.  What did I see that made me insist on testing and retesting?  First, I was autistic and she was my mini-me, so I just had a hunch.  Lots of family members, less familiar with Autism in general and not at all familiar with Autism in highly verbal girls, didn’t see anything.  Second, she had colic, like I had as a baby.  Third, focused interests from an early age.  At two she was fixated on the color purple.  By three it was princesses.  These interests were seen as normal and age appropriate, which is fine. Autistic interests are marked by their intensity, not by their obscurity.  Fourth, she was hyper verbal.  Speaking in full sentences by 18 months.  Had an absurdly huge vocabulary.  Didn’t teach herself to read, so not hyperlexic, but definitely hyper verbal.  Fifth, couldn’t slide easily into group play the way her younger sister could.  This doesn’t mean she couldn’t play with other kids, but it was easier for her to be in charge and hard for her to be flexible.  She’s mainstreamed at school, has been invited to birthday parties, and comes across as the smart, quirky, kind of awkward seven year old that she is.  She gets speech therapy for her pragmatic language issues, which are not obvious, but are definitely there. 

I agree.  

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There are so many strange things with autism, too, that are totally normal.

My son who does not have autism, had "motor" (movement, OT) issues that I was told by an OT she had only ever seen in children with autism and fairly pronounced autism.  The first time she met him she thought he must have autism based on that.  She was very concerned.  She got to know him and then saw it as an outlier.  I took him to be tested when he was 9 and was told -- consistent with being an autism sibling but not autism.  I agree with this now as he has gotten older and he has done better socially and getting along as he has gotten older.  

My son who does have autism, I have been told has particularly good OT skills for someone they see who has autism.  Basically he has better motor skills than my son who does not have autism, but he has got legit autism.  

And then kids change a lot with age.  My son who has autism has gotten less severe, but he used to be legit severe.  But he didn't have common infant red flags.  He does have things from infancy that I have found out to be common from talking to other parents, but they aren't the "known-known" things.  He used to stare at walls when he was little and we would try to see what he was looking at.  He used to stare into space and kinda be hard to engage when he was an infant -- and that is not really a red flag, but I have heard this is common.  He did not have the common-common-known red flags, but he was diagnosed in the severe range two weeks before he turned 4.  

My son who, I found out later, that some things from when he was an infant, were total red flags, does not have autism, and he didn't show signs the same way by the time he was a toddler or pre-schooler.  My son who does have autism was better when he was an infant but kind-of got worse, while my other son was kind-of worse as an infant and then got better.  

It is just weird like that.  

And like pp says -- her daughter wasn't diagnosable at one age and then was at another (older) age.  That kind of thing totally happens and is totally legitimate.  

Screening tools are not the end-all be-all right now, and some things just unfold with time.  But screening tools are definitely not able to be predictive at this time, it is just how things are right now.  

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10 hours ago, kand said:

In hindsight, do you see it looking back at their early childhood? In what ways? I honestly don’t see it at all when I look back. I see sensory issues with clothing and some emotional lability starting in early school years, perhaps anxiety related, and some other signs of anxiety, accelerating after puberty, but all I see in the baby and toddler years is a very smiley, interactive baby who met physical and language milestones early or on time, made eye contact and was generally a joy to be around. This dc appears autistic at this point at 18yo, acting more and more so as time goes on (she is obsessed with watching autism videos and making lists of how she fits the diagnostic criteria) and I think we’re likely headed for this diagnosis, but I can’t stop wondering how it could just “develop” when she was older, when it’s supposed to be present from before they are three. Anyone else seen this presentation in a highly intelligent girl?

I'd have a couple of questions here. 

First of all, does she have any chances for social interactions this year? I can imagine the pandemic would exacerbate issues. 

Secondly, what was she like with her peers as a kid? What is she like with peers now? I will say that it's possible to have highly intense interests and yet definitely not be on the spectrum. 

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16 minutes ago, Not_a_Number said:

I'd have a couple of questions here. 

First of all, does she have any chances for social interactions this year? I can imagine the pandemic would exacerbate issues. 

Secondly, what was she like with her peers as a kid? What is she like with peers now? I will say that it's possible to have highly intense interests and yet definitely not be on the spectrum. 

I agree with this, too.  

I also think there is some gray area where it doesn't necessarily matter but it can be okay either way.  I think this is fine.  

I think for a parent -- there is a way to be supportive but also non-committal to some extent, if you just are not seeing it.

And then even if a parent does see it, what if the child decides they aren't into it anymore at some point in the future? 

I think it's probably going to take some time to see what sticks after some time goes by, especially if it is a new idea.  And I think that is okay, lol. 

Overall I think -- keep anything that is helpful, and discard anything that is not, and that can change over time, and people definitely change over time, and it is very hard to predict where things are going to go in the future.  

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I think it is pretty common for someone to find out about autism, or have a child diagnosed, and start to look around at other family members and wonder and wonder.  And that can take time.  And family members can be more or less interested.  I think that is all fine.  

I have got one child and one first cousin with official diagnoses, and then I have had my eye on people, and then other people just have zero interest and don't think it has anything to do with them.  And really -- I think that is fine. 

In my family, the obvious people are the people who don't think it has anything to do with them, and to some extent, on one hand, maybe that is to be expected that maybe someone with autism or Aspergers doesn't recognize that about himself or herself.  On the other hand maybe it's none of my business and they know more about it than I do.

I think to some extent ------ I do have an opinion, that someone who self-identifies, if they are not having it brought to them by a family member or therapist or teacher etc, -- I think someone who self-identifies is likely to be someone who has got more self-awareness.  Someone who has more self-awareness is also likely to have more social anxiety (these two things can be linked).  So that makes sense.

But I also think there are people who might seem from the outside like it should maybe be obvious, but maybe they don't care and/or aren't self-aware enough to even begin to see it or why it would have anything to do with them, and maybe this has to do with being a little less self-aware, and this can also mean more success in ways because of not having the same kind of self-doubt or anxiety that can come with greater self-awareness.  

Anyway -- just some things I think or wonder about.  

I also totally agree -- there are some stereotypes about autism that "if a girl likes this or that" it means autism ------ that I think are pretty shallow and usually meaningless, even if once in a while the connection could be there.  

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Anyway -- I DO think -- someone who self-identifies, that should be respected and seen as valid, even though the act of self-identifying is an act of self-awareness, which can be seen as not consistent with autism. 

I think bottom line -- the spectrum is so, so broad.  All kinds of people are on it.

And then too, I do think, if there is a chance this is a fad, I think it's okay to hang back a bit if someone doesn't see it and/or thinks it is a fad, while being supportive.  

I also think there are people who could be a parent who is not able to see it in a child, because of their own lack of self awareness, while a child could have greater self awareness and see it.  

I think all kinds of possibilities exist.  

And that it's very possible to be supportive but non-committal, or to accept things someone says even without totally seeing it.  I think these things are fine.  Because I think people have their own journeys, and its hard to know where they will end up, but it is nice to be interested and supportive.    

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I really think, too, its fair to be more- or less- interested in a diagnosis, depending on how things are going.  But for a person to self-identify -- I think people can self-identify while to an outside person it could appear "but everything is going great for you."  I think both views are valid.  I think some things can be the role of one person or another, and fine either way.  

And I think there are times that a given person could either be into the autism thing, or care less about it, and either way could be totally fine for that person.  

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For myself -- I have two close family members (a first cousin and a son) who have an official diagnosis.  In my generation, there is one boy and one official diagnosis.  In my kids' generation, there are two boys, one official diagnosis, and one "consistent with a sibling with autism."  There have been mostly girls, though.  Out of 6 girls in my and my kids' generations (siblings and first cousins), I think 3 out of 6 have major autism traits, but not meeting a criterion of -- having major problems in life.  It's kind-of a gray area with girls, compared to boys.  

Part of it is, on one hand, girls are expected to have much higher social skills than boys.  (Edit:  in this way I think it is much, much harder for girls, because there is an objectively higher standard.)  On the other hand, if girls with autism have better social skills than boys with autism, that means maybe they have a better chance of getting by.  

At this point, I think the best thing is to be open-minded and let people think what they want to think.  

Edit:  there is a big gray area, too, for what is meant by definitive problems with getting by in life or just having problems -- it is a huge gray area.  So gray.  I think it can come down to where someone draws a line, and also, just how much self-awareness someone has, and I think it can happen that someone who is actually more self-aware will self-identify while someone who is less self-aware won't -- I think that is just life, and both ways are fine, since that is how it can be sometimes.  Even though it can be a bit ironic -- I think it is fine.  

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Really I also think some people just bull-in-a-china-shop make a way for themselves in life, and it actually works out, even if it seems like it shouldn't.  I think that totally happens!  And I also think many people will appreciate a person who has autism because they see that person's good points and don't mind their deficient areas.  I think that totally happens, and some people totally make a way for themselves even if it would seem like they shouldn't.  I think that is just how things go -- and how it is hard to predict.  

I think trying and "putting yourself out there" are big things, that some people will eventually succeed if they keep trying, but they may be the people who are less sensitive to feeling like "I got a bad reception."  Which is ironic but -- I think how it can go sometimes.  

It is definitely a thing that greater self-awareness can tie to greater social anxiety, and less self-awareness can tie to less social success, but without the social anxiety, there can be that bull-in-a-china-shop thing that can really work out.  With people eventually finding a place for themselves that mostly works out for them.  

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Hmmmm, so out of my siblings plus first cousin, and our kids (two of us had 5 kids total)......

I would say two are straight-up diagnosed.  

Three I straight-up don't think have autism.

Then four of us I think are more of gray areas, and I think any of us could self-identify or seek a diagnosis as an adult, and have it be totally legitimate.  Of those four, the one I think is the likeliest candidate has zero interest.  I have some interest and I think I am a legitimate candidate, but I haven't gone past reading books and thinking about it.  Then let's say I was diagnosed -- that would implicate, potentially, the others in the gray area.  But I think it is a gray area at this point.  

But two out of three boys have a diagnosis and the third boy is "consistent with a sibling with autism."  

This is the lens through which I see girl diagnoses, basically.  I think it's tilted towards boys, but at the same time, what about the siblings and first cousins of boys, is is just nothing then?  Or should it also be diagnosed?  It's a bit of a gray area, and I think often would be fair to go either way.  

But I don't think it's fair if the default is that girls will be missed because they don't look like boys.  I think girls should matter, too. 

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One of the three I straight-up don't think have autism, if he self-identified one day, I would believe him and just think -- I wasn't aware of how much he was compensating, or what it was like for him.  Because -- how could I know, who am I to say I know better than him?

But I do think too, that is a bit different when there are multiple family member who are diagnosed.  Somehow in my family, one seemed like a fluke, and then two seemed like a pattern to, well, most people, but notably not everyone.  

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3 hours ago, Lawyer&Mom said:

Second, she had colic, like I had as a baby.

I am just commenting here, but my son who does not have autism was really a very, very difficult baby.  He was very hard to settle.  Crying for hours.  Etc.  

My son who went on to be diagnosed was a sweet, happy baby.  He was definitely on the clingy side and didn't care to go to strangers, but he was a sweet, happy baby.  He was a little wobbly and we thought he seemed a little slow at young ages (under a year old) because he would just seem slower to focus on things, but he was a sweet, happy baby.  He was loving, he was affectionate.  

My difficult baby I often felt was rejecting me and just generally unhappy with me.  Typical for him was to do "tummy time" and beat his feet on the ground while glaring at me.  He would glare at me from his rocker.  He would glare at me from his stroller.  Lots of glaring.  

But he just did not stay that way, he got to be very sweet and loving.  

Who knows, lol.  

Edit, also, he would turn his face from me when he was an infant -- I was always re-positioning him so he would be looking at me.  He was always turning his face from me and glaring.  

My son who turned out to have autism ------ never did anything like this!  He was adorable and sweet, and preferred to be held by me than to go to anyone else!  Edit:  He was a Mommy's boy, and twin sister did like to be passed around and would coo with anyone, and loved to be held by anyone.  My son did not, but he was happy with me.  It worked out well with having twins.  Edit: She was very affectionate and close to me, too, she did just also like to be held by anyone and would coo with anyone.  She was very cute and often people would offer to hold her since I had two babies.  It really did work out well.  She was very cute and everyone loved her 😉

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16 hours ago, Rosie_0801 said:

How did she play when she was small?

She has a sister two years older that she was always best friends with, and they were eachother's primary playmates. It's hard to look back and see how much one sister or the other led and how much the other followed. Their play was primarily all of the imaginative story type play. They are both highly imaginative and would be in pretend play world all day when they were little.

 

Before I answer further questions, I realize in reading replies that I gave so little background info that it really doesn't give a clear idea of what the situation is and why this is so confusing. I will give more, but this part I would like to be able to delete later, so please

*don't quote*

[deleting most of the personal background, as I've gotten helpful input from people here based on it]

The fact that she seems to have this concept that if she is on the spectrum, people will no longer have the same kinds of expectations of her, and she can just live at home forever and have no requirements is  concerning. I know lots of thriving young adults on the spectrum (honestly, my oldest might be one of those, but that's another story), but the possibilty of this diagnosis seems to just be sending her backward. She is getting less and less functional, even in the face of less and less demands.

**

15 hours ago, Lecka said:

Have you looked at information specific to girls?

 

I have read a lot on autism in girls, as has she. Based on those descriptions, I do think she currently will meet criteria.

12 hours ago, Lecka said:

As far as generally being a joy to be around — also common 🙂. There’s a bit of a stereotype that parents are so surprised to hear anything mentioned bc their kids are doing great at home and they don’t see the issues that are seen in a group settings.  AND it’s also common for a child to be easygoing and not causing obvious problems while also not having the social skills that would be looked at by a picky person.  A person looking for a diagnosis would be Looking for skills.

I realized after the fact that the "joy to be around" part might come across wrong. I know lots of kids on the spectrum are a joy to be around. She stopped being that way as she moved into elementary school though. She became increasingly difficult. I thought for quite awhile that she might end up with an Oppositional Defiant DIsorder diagnosis. I think the Pathological Demand Avoidance profile fits her even better. That's actual a point in favor of an ASD diagnosis being accurate. So, she was definitely not easy going. That's part of what is weird is how much she changed from toddlerhood to early elementary. I chalked it up to perhaps once the demands of school were there, and considering she has some learning challenges, coupled with a high IQ, that it probably made life frustrating.

8 hours ago, Lecka said:

I think it's also important to point out, I don't know your history with home-schooling, but many, many kids with autism will thrive in small groups and find larger groups to be difficult.

If you provided her with small groups and protected her from over-stimulation, instead of "throwing her to the wolves," then you have probably just not seen as much as if she had gone to be in a large group of kids for 7 hours a day.  

Anxiety, if it turns out to be related to social anxiety from being around people or not knowing what the social expectations are, would totally fit, possibly.

I

She was homeschooled from the start. She had outside classes she participated in from preschool age on. That always went fine. She was quiet, but fine. Once she was in late-elementary school, I had a strong sense that she would hate being thrown into public school. She was so oppositional with me about doing school work that I was often tempted, but I knew it wouldn't be a good situation for her, and feared she would do worse there and not better. On the other hand, as she moved into middle school years, she was participating in more and more things and doing great. She worked helping with summer camps and such, and she was great. How would it be that she could do that fine at that time, and now not even be able to work a couple hours a week where she doesn't even need to talk to anyone?

7 hours ago, Lecka said:

I am also probably overly sensitive to this, but it can come across sometimes to me like ----- people think kids with autism must be unlikable, only difficult, no redeeming qualities, giving their parents hell, hard to love, etc.  

That is just not true.  

I think there is still this sense of "oh, no, not autism," like it is so bad, but really -- it does not need to be that way.  

It's a pretty broad umbrella and it is fine to only look for things that are helpful and discard things that don't fit or aren't helpful.

If your daughter is trying things out -- and you don't agree -- maybe she is just trying some things out and they won't last long.  

Or maybe there are things that speak to her that you don't necessarily see, but that can be fine for her say speak to her.  I think that is okay, too.  

I agree I phrased that badly, I definitely don't think that way at all. Like I said, I wouldn't be surprised to discover my oldest is on the spectrum (but she also may not be--she has ADHD, and that may be enough to explain her quirkiness), and I know lots of delightful kids on the spectrum. I would love for that to be the only thing going on for my dd, but I just am not sure that explains what's going on.

7 hours ago, Not_a_Number said:

I'd have a couple of questions here. 

First of all, does she have any chances for social interactions this year? I can imagine the pandemic would exacerbate issues. 

Secondly, what was she like with her peers as a kid? What is she like with peers now? I will say that it's possible to have highly intense interests and yet definitely not be on the spectrum. 

She only has online social interactions, and she has a very dysfunctional online persona. She has had trouble with social interactions for the past 4 or 5 years. When she was still in social situations with classes and such, no one was good enough for her to want to interact with. She would pretty much say this. The other kids would try, and she would complain to me about how lame these kids were for one reason or another and why she didn't want to be friends. When she was younger, she was always a shy kid with few friends, but she did make friends and do well with the ones she made. She had a couple she was close with, and she was very comfortable with those.

As I said, this is a very complex situation and it's impossible to give the full picture in one post. I'm just not sure whether this potential diagnosis is going to make things better or worse right now, since she is so bent on getting this diagnosis and seems to think it's her ticket to no expectations for the rest of her life.

 

 

Edited by kand
deleted some personal details. Thanks all.
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My dad is 100% autistic, and 100% not interested.  I’m not even sure he could see it in himself if he wanted to.  My uncle self-identifies as Autistic, as do two of my cousins.  I suspect my kid is at least fifth generation Autistic, based on stories I’ve heard about my great-grandpa.  It’s super okay for people to not want/care/need a label.

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1 minute ago, Lecka said:

I am just commenting here, but my son who does not have autism was really a very, very difficult baby.  He was very hard to settle.  Crying for hours.  Etc.  

My son who went on to be diagnosed was a sweet, happy baby.  He was definitely on the clingy side and didn't care to go to strangers, but he was a sweet, happy baby.  He was a little wobbly and we thought he seemed a little slow at young ages (under a year old) because he would just seem slower to focus on things, but he was a sweet, happy baby.  He was loving, he was affectionate.  

My difficult baby I often felt was rejecting me and just generally unhappy with me.  Typical for him was to do "tummy time" and beat his feet on the ground while glaring at me.  He would glare at me from his rocker.  He would glare at me from his stroller.  Lots of glaring.  

But he just did not stay that way, he got to be very sweet and loving.  

Who knows, lol.  

The colic may also be linked to the multi-generational hEDS in our family.  If you suspect Autism, you owe it to yourself to Google Ehlers-Danlos Syndrome. 

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11 hours ago, Lecka said:

I just read this one, and it was quite interesting on several fronts. There was a lot I had read before, but a few specific things stood out that are very relevant to her. Some aren't (she was never a tomboy, until recently always really enjoyed makeup and such, never gravitated to boys, always liked to play with her toys in imaginative, story-based way, not just organizing, and some others). But there are some very interesting things particularly in the realm of losing touch with reality, multiple personality, borderline, etc.  I keep going back to feeling like the diagnosis fits, but that she is taking it to mean something it doesn't and making it more pathological than it needs to be (which is interesting, since she's big on "autism acceptance" rather than "autism awareness"). If she could have some good role models on the spectrum, it seems like that would be good. She watches so many autism tiktoks that I'm not sure why she things being on the spectrum means she has a pass to give up any goals or expectations in life.

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My cousin has co-morbid bi-polar II.  I do not know a lot about, but it's definitely possible to have a co-morbid diagnosis.  

At this point it can seem like the main thing is the bi-polar II, while the Aspergers can seem like a personality trait, but I do think in his case, he has trouble following directions and some anxiety around conversation that I think seem like Aspergers, and those are issues.  Other than that -- it seems like the main thing is bi-polar II and then just personality traits -- and they are fine personality traits, just noticeable, if that makes sense.  

I don't know for everything what could be co-morbid, but it seems like my cousin does much better with medication.  I don't know enough to know if NPD could be a medication thing.  For my cousin, it is helpful because the medication is helpful.  

I think to him at this point the Aspergers is a side note, but he is also one where it just is not super-meaningful to him and he is not someone who is going to sit and think about it and analyze it.  He does not connect with it.  If that makes sense.  

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4 minutes ago, kand said:

I just read this one, and it was quite interesting on several fronts. There was a lot I had read before, but a few specific things stood out that are very relevant to her. Some aren't (she was never a tomboy, until recently always really enjoyed makeup and such, never gravitated to boys, always liked to play with her toys in imaginative, story-based way, not just organizing, and some others). But there are some very interesting things particularly in the realm of losing touch with reality, multiple personality, borderline, etc.  I keep going back to feeling like the diagnosis fits, but that she is taking it to mean something it doesn't and making it more pathological than it needs to be (which is interesting, since she's big on "autism acceptance" rather than "autism awareness"). If she could have some good role models on the spectrum, it seems like that would be good. She watches so many autism tiktoks that I'm not sure why she things being on the spectrum means she has a pass to give up any goals or expectations in life.

Maybe it is new to her and she is still figuring out what to think.  That would be a best-case scenario and also be very possible!  

 

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Oh, @kand 😞 . That sounds like an incredibly hard situation. It does sound like she's looking for answers, and it also sounds like those answers aren't helping her, and are instead providing her with an "out" that lets her not actually try to figure out her issues. 

To me, it sounds like it's possible that she's on the spectrum or at least adjacent to it, but it also doesn't sound like that's the biggest issue, so in some sense it doesn't MATTER much if she's on it or not. That's not going to be the revelation that fixes things, and she clearly wants it to be. 

As a personal story, I also did some soul-searching around autism when I was in my late teens and early 20s. At the end of the day, I decided that I wasn't anything diagnosable (although I wasn't the only person who had ever noticed those traits, so it wasn't a delusion, either), but for me, the soul-searching was helpful, because it explained some things. But I wasn't having major mental health issues -- I just felt rather different from other people, and I had more trouble with social stuff than a lot of people I knew. So, thinking about the fact that some things are harder for me than average was PRODUCTIVE -- it let me face my issues from the perspective of knowing myself and not being unable to learn. And it doesn't sound like this is productive for your DD 😞 . 

Edited by Not_a_Number
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3 minutes ago, Not_a_Number said:

Oh, @kand 😞 . That sounds like an incredibly hard situation. It does sound like she's looking for answers, and it also sounds like those answers aren't helping her, and are instead providing her with an "out" that lets her not actually try to figure out her issues. 

To me, it sounds like it's possible that she's on the spectrum or at least adjacent to it, but it also doesn't sound like that's the biggest issue, so in some sense it doesn't MATTER much if she's on it or not. That's not going to be the revelation that fixes things, and she clearly wants it to be. 

As a personal story, I also did some soul-searching around autism when I was in my late teens and early 20s. At the end of the day, I decided that I wasn't anything diagnosable (although I wasn't the only person who had ever noticed those traits, so it wasn't a delusion, either), but for me, the soul-searching was helpful, because it explained some things. But I wasn't having major mental health issues -- I just felt rather different from other people, and I had more trouble with social stuff than a lot of people I knew. So, thinking about the fact that some things are harder for me than average was PRODUCTIVE -- it let me face my issues from the perspective of knowing myself and not being able to learn. And it doesn't sound this is productive for your DD 😞 . 

Thank you. What you say is exactly how it feels to me. I do think she is on or close to the spectrum, but I worry that discovering that is setting her back in life rather than helping her understand herself in a way that allows her to move forward. Maybe getting a diagnosis would help us have some resources that will then help her move forward in a healthier way.

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1 minute ago, kand said:

Thank you. What you say is exactly how it feels to me. I do think she is on or close to the spectrum, but I worry that discovering that is setting her back in life rather than helping her understand herself in a way that allows her to move forward. Maybe getting a diagnosis would help us have some resources that will then help her move forward in a healthier way.

She does sound like she's close enough to it that it's not out of left field. And it sounds like she's fragile and it's important to her, so I don't see any advantage to fighting it. 

I'm sorry she's having such a hard time 😞 . 

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4 hours ago, Lecka said:

Anyway -- I DO think -- someone who self-identifies, that should be respected and seen as valid, even though the act of self-identifying is an act of self-awareness, which can be seen as not consistent with autism. 

Bahahahhahahaha

Don't you believe it. (Not you, the public.)

 

But from the added information, there's definitely more going on than mere autism. Autism is not a reason to choose to be less healthy than one can be. ((Hugs))

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11 minutes ago, Rosie_0801 said:

Bahahahhahahaha

Don't you believe it. (Not you, the public.)

But from the added information, there's definitely more going on than mere autism. Autism is not a reason to choose to be less healthy than one can be. ((Hugs))

I do think the self-awareness for autism spans a wiiiiiide range. I know some very non-self-aware folk and some very self-aware folk. 

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8 minutes ago, Rosie_0801 said:

But from the added information, there's definitely more going on than mere autism. Autism is not a reason to choose to be less healthy than one can be. ((Hugs))

Thank you. That’s what I’m hung up on. Hopefully as she gets help for the other issues, her framing of any spectrum diagnosis can become more healthy. Hopefully some of the people she will be working with will get her and find ways to reach her. This kid has oodles of potential and so many directions she could go in life. She has some enormous talents. The current situation is hard and sad. 

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1 minute ago, kand said:

Thank you. That’s what I’m hung up on. Hopefully as she gets help for the other issues, her framing of any spectrum diagnosis can become more healthy. Hopefully some of the people she will be working with will get her and find ways to reach her. This kid has oodles of potential and so many directions she could go in life. She has some enormous talents. The current situation is hard and sad. 

Having her interactions be primarily online can't have been good for her 😞 . And I know she's not the only one who winds up with an unhelpful online persona -- it's sadly pretty common. 

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4 minutes ago, Not_a_Number said:

I do think the self-awareness for autism spans a wiiiiiide range. I know some very non-self-aware folk and some very self-aware folk. 

Same with NT people, no?

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4 minutes ago, Not_a_Number said:

Having her interactions be primarily online can't have been good for her 😞 . And I know she's not the only one who winds up with an unhelpful online persona -- it's sadly pretty common. 

I know. I feel like the internet is the worst thing that ever happened to her. My oldest has verified what I have picked up on, which is that young people online often have a focus on their “pathologies” and get a lot of support and encouragement in response. Those that are just “normal” don’t get much attention. It’s reinforcing. 

Edited by kand
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Just now, kand said:

I know. I feel like the internet is the worst thing that ever happened to her. My oldest has verified what I have picked up on, which is that young people online often have a focus on their pathologies and get a lot of support and encouragement in response. Those that are just “normal” don’t get much attention. It’s reinforcing. 

Yes, I've seen this dynamic. For anyone who's a misfit in any way, it can be very liberating to find one's "tribe." (Heck, we know how that goes, right? Otherwise, we wouldn't be on this forum!) And as a young adult, it's easy to build this identity around issues. 

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2 hours ago, kand said:

*don't quote*

I think that whoever evaluates her needs to look at what you took the time to type out so that they can take things into consideration.

2 hours ago, Lawyer&Mom said:

The colic may also be linked to the multi-generational hEDS in our family.  If you suspect Autism, you owe it to yourself to Google Ehlers-Danlos Syndrome. 

Do you mind giving me the basic thought of how colic is linked to EDS? EDS gets linked to so many things--I am really curious how some of those incidental things will contribute to additional research. My hypermobile (but not EDS) kid was not colicky.

33 minutes ago, Rosie_0801 said:

But from the added information, there's definitely more going on than mere autism. Autism is not a reason to choose to be less healthy than one can be. ((Hugs))

Indeed. One of the people in my life that is not identified but has remarkable traits also shows lots of borderline personality disorder traits (she was evaluated as a kid for something--there are mysterious hints thrown out at times for various effects, and a sibling has that diagnosis). I also know families where no one is quite sure if what runs through the family is bi-polar disorder, ASD, or both. The traits come in go generationally in nearly all families where someone has a diagnosis, and it seems like mental health issues are lurk around those same edges. 

You might also consider a physical that looks deeper than typical. One person in my extended family that was mentally ill had pernicious anemia (that type of anemia runs in the family)--there is some overlap with psychiatric symptoms, and some people have symptoms before it shows up in bloodwork. It's usually age-related, but there are multiple causes. My relative never got help for her mental health issues, so we don't know for sure if they were related. 

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6 minutes ago, kbutton said:

I think that whoever evaluates her needs to look at what you took the time to type out so that they can take things into consideration.

Do you mind giving me the basic thought of how colic is linked to EDS? EDS gets linked to so many things--I am really curious how some of those incidental things will contribute to additional research. My hypermobile (but not EDS) kid was not colicky.

Indeed. One of the people in my life that is not identified but has remarkable traits also shows lots of borderline personality disorder traits (she was evaluated as a kid for something--there are mysterious hints thrown out at times for various effects, and a sibling has that diagnosis). I also know families where no one is quite sure if what runs through the family is bi-polar disorder, ASD, or both. The traits come in go generationally in nearly all families where someone has a diagnosis, and it seems like mental health issues are lurk around those same edges. 

You might also consider a physical that looks deeper than typical. One person in my extended family that was mentally ill had pernicious anemia (that type of anemia runs in the family)--there is some overlap with psychiatric symptoms, and some people have symptoms before it shows up in bloodwork. It's usually age-related, but there are multiple causes. My relative never got help for her mental health issues, so we don't know for sure if they were related. 

Yeah, after sitting through dd’s virtual intake with the neuropsych, I was concerned she was not going to have the full picture without me sharing what else is going on, so I emailed her about that, and she has set up a one on one virtual with me before dd’s eval. I appreciate she agreed with the importance of that. 
 

There is some grandparent history of bipolar, so that is interesting. 
 

I’d love for a doctor to get really in depth with her bloodwork. I pushed for thyroid testing because there’s a family history of that, but the dr had zero curiosity about her somewhat unusual results (initially higher than ideal TSH, but dr said was fine (3.05), then four days later retested with a more sensitive test at 1. Something. That seems odd to me.) I’m hoping perhaps the psych at the residential facility might run better bloodwork?

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This is an aside with my family — but there is a great-aunt who was diagnosed with bipolar, and while it sounds like she did have bipolar, she was also known for being very sensitive to sound.  Well — that probably comes across differently now than it did in the 1940-1960s.  
 

Another first cousin of my mom and aunt was diagnosed with mental illness (my mom doesn’t know specifics) but also seems like she could have autism in retrospect, with how it would be looked at today.  She loved animals and could barely talk to people, didn’t look at people, didn’t like to leave her apartment, etc.  It’s hard to know especially because my mom just remembers her but never knew what adults were saying about it — but what she remembers are things like that.  (My mom and aunt were a lot younger than some of their first cousins and this one was 10+ years older than they were, I think.)

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Something about myself -- I have gotten more self-aware in ways, as I have been forced to confront many things that I was happy to exempt myself from in the past.  Or to just feel free to not care about certain things.  

That attitude changed for me with parenting and having a child with autism.  I have found I do need to care about some things, after all, to be the parent I want to be and support my son with autism the way I want to support him.  

In this process -- I am more self aware, and I see myself now as somebody who in the past, made more effort and "put myself out there" and had a lot of failures but successes, too, because I would try for things and mind less when things didn't work out.  

Now I feel like I am more sensitive to things not going well, and it is harder to try things, but also, I think I am doing somewhat better.  But it is hard to say if it balances out or not.  I think it will take more time to tell.

But I don't think I ever would have picked this on my own, and if I could have gotten away with not doing it, if my kids were not having bumps that implicated me to try to address them, etc.  

I definitely feel like I have an Achilles heel of not knowing what I don't know.  

And, I feel like without kids, I would answer questions very differently, because I know I would have just been someone to go "what does that have to do with me?"  One hundred percent this is the case.  But now I am not the same person any more.  

Anyway -- I feel ambivalence about it.

 

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For me my Autism and my hEDS are one and the same, and everyone in my family has neither or both.  My dad and I were both “colicky” babies, my daughter was actually diagnosed with silent reflux.  I believe there is a connection between reflux and the defective collagen.  (And dietary sensitivities and digestive problems etc. etc.)   

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My oldest child had speech issues related to oral motor difficulties, and they had sensory issues as a toddler.  They were extroverted, but because of those risk factors, I had them evaluated for autism at three, and they were fine, although the developmental pediatrician said they were at risk of ADHD.  They developed anxiety at 15, and now I wonder a bit if maybe they touch the spectrum a little?  But I'm not at all sure, and they do not have a diagnosis.  

With my younger daughter, by the time she was two, I was telling everyone, "I think she's on the spectrum."  She was verbally and physically precocious, but she had clear cut severe anxiety pretty much from birth and social difficulties that were obvious to me from very early on.  At her second birthday party she said, "Mommy, I don't like other children.  I prefer to play alone."  Which, obviously most two year olds aren't great with other kids, but it was just pretty clear that there were some issues.  We had her evaluated at 2.5 by early intervention, who found "atypical development," but no delays and they didn't have services to offer us.  We had her evaluated by the school district at three, who found social and adaptive skills in the low average range but all other skills in the highly gifted range.  At four, we went to the developmental pediatrician, who initially said autism but when she passed the ADOS, they said, "Well, no, that can't be right."  We started anxiety meds just after her fifth birthday, and she definitely looked way less autistic on meds, but I still saw issues.  Neuropsychologist eval at 7 said no autism but severe anxiety, learning disabilities, and mild ADHD.  The Virginia Tech Autism Clinic did an evaluation when she was 8 and again did the ADOS, and she again passed it, so they said no autism.  The pediatrician and psychiatrist agreed with me about autism, but she'd had three comprehensive evaluations, and had passed all of them, so we said, "I guess that can't be right."

At 11, the psychologist said, "You know she's autistic, right?"  And we were like, "Well, we always thought so, but she's passed the ADOS three times, so they say it's not possible."  He said, "If you go through the DSM, she clearly meets the criteria.  The ADOS can be helpful, but it's the DSM that determines a diagnosis."  He actually said that the ADOS was more of a test of "would this child benefit from ABA" than a "does this child have autism" test.  

Which....makes total sense.  And it was the DSM criteria that had always made me think she had autism.  That said, while I had a LOT of concerns about her as a toddler and even up through early elementary school, I actually feel pretty sure she's going to be okay now.  There's the occasional crisis when her anxiety meets inflexible bureaucracy, but she's not bad at self advocating, and those are genuinely pretty rare at this point.  She has solid life skills, does okay academically, behaves appropriately, maintains friendships with other nerdy, introverted kids.  At this point, I actually have more concerns about my oldest with "just" anxiety, that manifested suddenly at 15 than I do with my definitely ASD kid.  

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On 4/5/2021 at 4:34 PM, kand said:

She only has online social interactions, and she has a very dysfunctional online persona. She has had trouble with social interactions for the past 4 or 5 years. When she was still in social situations with classes and such, no one was good enough for her to want to interact with. She would pretty much say this. The other kids would try, and she would complain to me about how lame these kids were for one reason or another and why she didn't want to be friends. When she was younger, she was always a shy kid with few friends, but she did make friends and do well with the ones she made. She had a couple she was close with, and she was very comfortable with those.

I find this description to be interesting, because my oldest is what I often refer to as "overly picky about friends."  For instance, when my diagnosed autistic younger kid goes into a social situation, she finds the person who she likes the most who looks like they are available to be friends with, and she actively befriends them.  They may not be great friends outside of school/ activity/ etc, but she will be buddies with them at this experience, and she picks people who she finds "good enough."  My oldest has a much greater need for social interaction really, but counterproductively excludes people who they find less than ideal and will just go without a friend/ activity rather than put up with someone who does not meet their expectations.  It is not a healthy dynamic, but I honestly have no real ability to FIX it, either.  It's one of the things that worries me about them long term.  

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Just now, Terabith said:

I find this description to be interesting, because my oldest is what I often refer to as "overly picky about friends."  For instance, when my diagnosed autistic younger kid goes into a social situation, she finds the person who she likes the most who looks like they are available to be friends with, and she actively befriends them.  They may not be great friends outside of school/ activity/ etc, but she will be buddies with them at this experience, and she picks people who she finds "good enough."  My oldest has a much greater need for social interaction really, but counterproductively excludes people who they find less than ideal and will just go without a friend/ activity rather than put up with someone who does not meet their expectations.  It is not a healthy dynamic, but I honestly have no real ability to FIX it, either.  It's one of the things that worries me about them long term.  

I'm like this. I wind up quite focused on my romantic relationships and then family as a result. It works for me. 

Of course, I personally wouldn't call it OVERLY picky 😉 . 

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Have you looked into OCD?  There are some behaviors that can very much present like ASD but are in fact OCD.  From reading through your posts on this thread, I encourage you to at least look into it.  Natasha Daniels on YouTube has excellent videos that can help narrow down whether or not it is something worth investigating. 

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