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Hilltopmom

Let’s talk ASD diagnosis for girls

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Anyone want to comment on their process towards arriving at an ASD diagnosis for young girls?

It looks different in girls, especially high functioning, and we are just starting this journey. I’m a sped teacher, we’re in a rural area and I think we’ll drive to a city to seek diagnosis, only one older clinician here who does diagnoses & I’m not sure she’s up to date on current research. (Maybe, I dunno, but I’ve read her reports locally and not been super impressed)

thanks

eta- things are complicated by a PANS- type episode after the flu last year when things went very scary neurological wise for awhile & never really got back to baseline

Edited by Hilltopmom

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I am not sure I can help.

 

My DD8 is really high functioning, but her communication/speech issues have been her biggest issues and therefore, she presents.........obviously,  but at the same time, how she presents doesn't necessarily define how she functions.  What she understands intellectually is rarely expressed by her as well as she ACTUALLY understands it.  And when you look at all the paperwork, it really makes me wonder if....had her actual language itself been closer to developmentally normal, would she have even qualified.  I don't know.

 

But, all that to say, our process to arrive at the diagnosis was easy.  Because she presented with such a severe language delay.  I don't know what would have happened if her language delay hadn't been so severe.  Without the language delay........I don't know that a diagnosis would have even been possible................................or necessary.  

 

 

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My dd (12) was diagnosed when she was 11. We used a Psy.D. BCBA-D. Happened to be a woman, but I'm not sure that's important. When I first called, I was still very unsure of what we were dealing with. The psychologist called me back and we talked for nearly a half hour. I specifically wanted to know if she was aware of the differences in girls on the spectrum. She seemed knowledgeable, so that who we went with. So maybe call around and see if you can interview someone.

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My 13 year old daughter has passed two comprehensive evaluations (they both determined no ASD) at ages 5 and 8, but every doctor or psychologist or teacher who has worked with her has thought she was on the spectrum.  The more anxious she is, the more ASD she looks.  But I've wondered about ASD since she was two.  Tonight she growled and hissed at the pastor when he startled her.  She always passes the ADOS, and she has a great grasp of irony and sarcasm.  She has decent awareness of social norms and such, in an academic sense.  But at some level, she doesn't really give a flying fig about meeting them.  If her anxiety is well controlled, and it's a structured situation, and there are supports built in, or she has motivation for imitating others, she doesn't appear to be ASD at all.  But then she growls at the pastor....

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Someone who is well-versed in 2e autism might be a good fit. A lot of 2e kids present differently with ASD, so someone used to that population might notices boy/girl differences as well. Hoagies Gifted has a list of recommended psychs for gifted kids. It might give you a place to start.

I think figuring out what you want to ask is a good place to start. For instance, what is lackluster about the reports you are seeing from the local person? Does it help you formulate what you'd like investigated? 

I have two boys, but I knew some girls (no longer bump into these families) that were suspiciously like my son (but hid it a bit better), and after he was diagnosed (almost 9 y.o.), I always wondered if they ended up struggling or getting a diagnosis. Anyway, by the time we parted company, both of the girls I'm thinking of were getting social support from peers that masked some of their difficulties. At least one of the two girls was confirmed as being gifted. One thing I would ask about is if the professional can help you differentiate difficulties if you are fairly suspicious that social support is allowing your DD to have more expected behavior than she would on her own.

Would it help to engineer some ways for you or friends to observe your DD in situations where her quirks would stand out so that they could offer their own observations? 

I think it's partly a question of finding the right fit in a professional and partly finding the right situation to showcase problems. For instance, we thought my son's language issues were minimal and restricted to pragmatic language problems. Ha! So, you might want some language testing that will tease things out--usually NOT the CELF. We found the TNL and the TOPS testing were more helpful. There is also a pragmatic language test that is useful once a child reaches 8 or 9. Before that, not so much. 

Bellini has a social skill inventory you can give you to adults that is also helpful. https://www.ocali.org/up_doc/Autism_Social_Skills_Profile.pdf

Adaptive behavior is important, and a lot of people overlook that side of things. Not everything has to be glitchy to be significant. Sometimes HOW it's glitchy is informative.

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I’m following this. I have a 7yo who is... intense. Definitely gifted, dx’d only with anxiety and dyslexia and SPD so far. Very observant of others but seems indifferent to the way her words hurt them. Lots of weird interactions with others. It’s hard to distinguish social observations from social awareness from social skills at this point. Folks usually assume that she’s just deliberately being mean or that it’s the usual tactlessness of children. She’s very quiet in groups though and that’s when her anxiety usually peaks. It’s hard to tell what’s going on in her head. I’ve wondered more than once if she might also be on the spectrum (runs in our family and ds is already dx’d). But the one time I brought t up to a professional, kind of laughing, “I’ve even wondered if she might be on the spectrum too!! Ha ha” sort of thing, they quickly laughed at what a silly idea that was and moved on. I knew enough about it presenting differently with gifted kids and also with girls, and that maybe not being widely understood yet, that I just decided to wait and watch how things continue to develop.

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Interestingly, 2 different people who have worked with her this week both asked me afterwards if she has a diagnosis. So, it’s not just me, at least. Her special ed teacher from last year is a colleague of mine and said to me the other day when we were discussing her “yes, she certainly is quirky, isn’t she”. So other people are seeing stuff too.

shes only 5 right now but her language disability diagnosis probably won’t stand next year & she’ll need a different label for her iep.

she has a sister a year older adopted by a different family who I believe has an ASD diagnosis but they don’t share much with me & live several states away

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I was surprised when we started anxiety medication at how radically how autistic she seemed decreased.  I mean, she was still certainly quirky (and as I said earlier, even now at 13 still does weird stuff), but the difference in the amount and quality of interactions was SO much different once we started the meds.  It was really a stark difference and really highlighted how much the anxiety had been impacting her and in how many domains of her life.  I had raised the question for the first time when she was two, but I hadn't realized how much of a difference the anxiety made.  

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Kookie if you look at the Social Coomunication Profiles on the Social Thinking site you'll find the idea of a "Social pass" distinguishes levels of deficit. https://www.socialthinking.com/Articles?name=Social Thinking Social Communication Profile

So for instance WISC gets no social pass (i.e. people think they're just bad) but still has deficits and needs supports and interventions. Because the DSM is utterly fallible and not based in any genetic reality, you could end up with any diagnosis from the previous pddnos to ADHD or pushing into ASD1 or no diagnosis at all. ESC is definitely ASD1and CSC is ASD2.

The most important thing is the kid needs the supports. It's not a yes/no with this. You can call it ADHD or ASD or nothing and do and need the supports.

Hilltop, with multiple people asking and language issues yes I would push on it. The language issues hold everything back because all of school (and behavior) requires language. Push for narrative language testing if they are trying to exit her. 

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On 9/23/2018 at 3:27 PM, happysmileylady said:

I am not sure I can help.

 

My DD8 is really high functioning, but her communication/speech issues have been her biggest issues and therefore, she presents.........obviously,  but at the same time, how she presents doesn't necessarily define how she functions.  What she understands intellectually is rarely expressed by her as well as she ACTUALLY understands it.  And when you look at all the paperwork, it really makes me wonder if....had her actual language itself been closer to developmentally normal, would she have even qualified.  I don't know.

 

But, all that to say, our process to arrive at the diagnosis was easy.  Because she presented with such a severe language delay.  I don't know what would have happened if her language delay hadn't been so severe.  Without the language delay........I don't know that a diagnosis would have even been possible................................or necessary.  

 

 

 

This was our experience. Dd10 had fairly extreme echolalia. She still does really, it's just very well hidden and morphed into what most people think is a quaint way of speaking with very good vocabulary. I think without the echolalia, it would have been less clear cut, although she still totally qualified. She was diagnosed with SPD at the same time (3yo) and now I'd say it is more anxiety, adhd, and social stuff that she struggles with. She's what most people would consider high-functioning.

Even only homeschooling and not needing to involve the school district ever, having the diagnoses has been very helpful. 

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Dd5 “passed” the ADOS last year, and picked up a highly gifted diagnosis on the way.  Despite the not-Autistic verdict from the psych, I think she is. So does grandma and pre-k teacher.  (She’s a WISC like me.). I wonder if we attempted diagnosis too soon. Since then she has developed a chewing habit (see! stimming!) and I have more examples I can cite of her subtle literalness.  Plus having the teacher on board might have made a difference.  Not sure how hard I want to pursue a diagnosis.  We do need to more work on social thinking.  Dh isn’t convinced, and I’m not sure he can be convinced.  Right now we are looking at a parochial K-8, because I think a smaller environment would be good for her, and she wouldn’t qualify for an IEP in our district even with a ASD-1 diagnosis.  

Its hard. I know the social challenges that are coming.  Dh barely even remembers elementary school.  At least she will have the benefit of a parent who understands, even if I don’t know how to fix anything for her.  

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