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4KookieKids

What's the deal with crossing the midline?

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4 hours ago, Lecka said:

Edit:  I don’t think at all they would value information from a teacher over a parent.  But I think a teacher is more likely to be blunt.  

I think this may be true of an actual teacher. But all we really have to go off of is a Sunday school teacher, which rotates week-to-week, so nobody would really have opportunity to know my girls well, and a dance teacher, where (a) kids are not given much time to interact because it's *extremely* structured (the main reasons we chose this school, because my dd7 completely crumbled in less structured lessons), (b) they only see her once (3yo) or twice (7yo) a week, and (c) there's some financial incentive to say, "Oh no! Your child is a darling! We don't have any problems at all!" Even when I'm being clear that I find no fault in the class itself and am just needing honest feedback regarding my child's development. 

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Yup, that's how we got into problems, asking people who didn't see him long enough to fill out forms. With ASD1/2 kids (my ds was always scoring right on that line), the swim teacher might see subtle things that weren't showing up on the forms (joint attention, referencing, etc.) and not seeing the horrific behaviors before and after class that were on the forms. So to me, I wouldn't even DREAM of giving that person the forms unless they see him in long chunks, 3-4 hours, on a regular basis. So a preschool teacher, someone who is with him in long chunks, fine. 

We finally got practitioners who were like screw that, we're gonna spend so much time with him (6-8 hours over multiple sessions) that we don't need the stupid forms. They had us do parent forms but didn't bother with the teacher forms. They were spending enough time that they could see the behaviors for themselves and didn't need those forms. That was two of the psychs we used. But the one who relied really heavily on feedback forms and didn't do the ADOS just got into a mess. But I don't have any nice things to say about that psych anyway. He didn't LISTEN. If someone is actually listening to what you say, it will make a big difference. You'll be able to tell that upfront. And on the spectrum question for this intake, just flat out what tools they'll use, who will fill them out, and tell them your concern that people in the community see your kids only in brief chunks of 20 minutes and aren't prepared to fill out those forms accurately. Some of them literally say should be done after an observation of 3-4 hours. So just talk it through.

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If you think your kids are going to come across well in an office setting in 1:1 interaction with an adult, and are worried about them not being diagnosed for that reason (which is my understanding) then I think it is something to think about or ask about.

I think if you say that you needed to choose this class for your 7-year-old because of x, y, z, I get it!  But I don’t know how that works.  I think you need to ask.  Maybe they will have a suggestion.  Maybe it will not be a big deal.

But I think we see this on the boards, that parents are doing a really good job of choosing environments that are a good fit and providing support, that it can look like “everything is great,” instead of — everything is going well because the parents are doing good things, but there are is a lot of effort going into it and a lot of close calls, and some things you avoid that you would not avoid if it would go well.  

But I think just being aware of it as a possible issue will go a long way.  I think see what they say.  

 

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Well, I think I'm glad to be keeping both appointments, to get input from different people... The private person who did our intake today was super nice and took lots of notes, but it was interesting to note that she flat out said that the ADOS is where it's at, so she'll do that, but she does not suspect it will turn anything up, and chances are that dd3 is just a moody toddler and dd7 is just anxious. But their ados scheduling is 6 weeks out, and then she said it's another 5 weeks out for results, so we have a while to wait anyway!

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Well, at least she was honest.  It sounds like she is saying she isn't going to diagnose them with autism, because she is saying she just goes by the ADOS and she doesn't think it will turn anything up.  But maybe it will, lol.  If she was interacting with your kids she may know that she has done some things similar to the ADOS already.  

Well, as far as I know, you don't have to stick to the ADOS for diagnosis, and it's not as reliable for girls (have I mentioned, there is info about this on spectrumnews.org).  

For our insurance, they require the ADOS for *ABA therapy.*  That is it's own issue, a lot of kids with ASD are recommended to see a different kind of therapist than ABA, so I think that's okay.  But I don't think that is the same as saying "oh, they don't have autism."  

I think to be positive, maybe this person will have some good ideas for your 7yo for anxiety?  That would be helpful!  

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I'd be wondering if you have other options. People who really know the ADOS don't go by JUST the ADOS.

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57 minutes ago, PeterPan said:

I'd be wondering if you have other options. People who really know the ADOS don't go by JUST the ADOS.

I’m still going to keep my appt at the diagnostic clinic but they haven’t even called me to *schedule* an appointment yet, so my hopes are not high that that will be very soon... 

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Just now, 4KookieKids said:

I’m still going to keep my appt at the diagnostic clinic but they haven’t even called me to *schedule* an appointment yet, so my hopes are not high that that will be very soon... 

hospitals around here are often a year out

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So I had my 3 yo's ADOS done with a private person and not gotten results back. Simultaneously, I had her evaluated through the schools, and it turns out that they do an ADOS too (though I didn't know that before hand). But now I'm confused. Here are the results the school gave me: ADOS score of 2 -> not even a little autism, despite BASC-3 percentile scores of 1st %ile in Adaptability, 1st in social skills, 99th in withdrawal, 97th in atypicality, 94th in anxiety, and 89th in aggression. So they very nicely (and I really liked this team, so don't get me wrong!) told me that it stinks she has so many problems at home, but at least she did great for them on the ADOS!  I'm interested to hear if the private person got the same ADOS results or not (maybe it's wrong to think that maybe the school wasn't as good as the private person? Or maybe it's wrong to wonder if having two ADOS's administered in one week might have skewed the results on the second one? I'm not sure). But -- assuming the school is right, and the ADOS says no autism, despite the BASC flagging all those sort of "autistic traits," -- what do I do with this information?

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10 minutes ago, 4KookieKids said:

So I had my 3 yo's ADOS done with a private person and not gotten results back. Simultaneously, I had her evaluated through the schools, and it turns out that they do an ADOS too (though I didn't know that before hand). But now I'm confused. Here are the results the school gave me: ADOS score of 2 -> not even a little autism, despite BASC-3 percentile scores of 1st %ile in Adaptability, 1st in social skills, 99th in withdrawal, 97th in atypicality, 94th in anxiety, and 89th in aggression. So they very nicely (and I really liked this team, so don't get me wrong!) told me that it stinks she has so many problems at home, but at least she did great for them on the ADOS!  I'm interested to hear if the private person got the same ADOS results or not (maybe it's wrong to think that maybe the school wasn't as good as the private person? Or maybe it's wrong to wonder if having two ADOS's administered in one week might have skewed the results on the second one? I'm not sure). But -- assuming the school is right, and the ADOS says no autism, despite the BASC flagging all those sort of "autistic traits," -- what do I do with this information?

Yeah, I have a kid who has passed the ADOS several times, despite clear symptoms.  The psychologist who gave her the first ADOS, when she was five, read the notes of the person who observed her at school and said, "This is a clear cut case of high functioning ASD."  But then she scored a ZERO on the ADOS.  He was flummoxed.  And we were flummoxed for years, because this happened over and over.  Everyone who spent time with her (and knew autism) said, "She sure seems like she's on the spectrum."  But she tested fine.  She even spontaneously offered to share the snack with the psychologist during the break part of the ADOS.  She knew all the right things to say and do.  She pretended like a champ.  But the older she's gotten, while she copes better and does better in pretty much every way, the more comfortable people have become with saying, "It doesn't matter what the ADOS says; she ticks every box."  I think smart, verbal girl ASD just looks different.  

She's had a medical diagnosis for years now.  The psychiatrist just put it in her chart, regardless of ADOS results.  But it doesn't make it easier to get services.  I think I'd be tempted to ask the private person if you can still get a dx if you need to access services, even if she passes the ADOS.  

If I recall, though, I think a two is on the border.  Like I think 0-2 is no autism, and 3 is where they start saying autism.  So she might be closer to that line than you think.  Like I said, my kid scored a zero every single time, but still meets the criteria.  

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On 2/3/2019 at 2:44 PM, 4KookieKids said:

 

My ds9 has autism, but I've never though to look to see if he does this. It's interesting you bring this up, because my DH actually brought up today the question of if we should consider autism evals for dd3. I don't know. In the video I referenced above, she does look me clearly in the eye for a full 5ish seconds. And her verbal communication skills are excellent. And yet... Occasional things stand out to me as odd. Nothing that I can point to and clearly say, "Yes, that's it," like I could with ds. But lots of little things. Things that could easily be brushed off as her being young, but also things that I wonder may just be different in girls with autism. But lots of fits/meltdowns, a certain amount of rigidity, and increasing isolation/withdrawal in any group activities (e.g., refusing to participate in her ballet class, standing in a corner by herself in Sunday school while others are doing the lesson/game, etc.). She flat out tells me (at just over 3.5?) that she just doesn't like other kids, and she doesn't like when people in dance class touch her or when she has to hold hands with other kids, and I heard her tell her sunday school teacher today that she just didn't want to play with anyone, and she'd rather stand in a corner by herself and she'll find herself a toy when she wants to play. After going through ASD evals with my ds, though, I'm not sure I trust anyone locally to recognize autism in a girl, though. As it was, folks had a really hard time recognizing it in ds because he was "so smart" and "just quirky"-- surely smart people don't have autism, right?   ....   I think I trust them even less to evaluation dd at this point. 

I read once that girls with autism often don't have the same obvious social thinking deficits that boys have, but that girls with autism usually have social thinking  of same-age boys -- which means behind typically developing girls, but not the kind of obvious social deficits that were noticeable with ds.

Oy, this is a rabbit trail, I guess. I just have so many thoughts swimming in my head. 

I already have two kids with developmental vision issues, so this also wouldn't surprise me. 

I just wanted to highlight...my kid crossed midline like a champ from early in toddlerhood, but my very first inkling that something was wrong was at her second birthday party when she turned to me and said, "Mommy, I don't actually like playing with other children.  I prefer to play alone."  My first instinct was to laugh, that it was so precociously verbal but explaining such a stereotypical two year old phenomenon.  But the more I thought about it, the more I realized that my older kid LOVED other kids at two.  And Cat was always, from birth, pretty anxious and reserved.  In retrospect, her anxiety was clearly present.  But that comment at that birthday party got me really watching and started me thinking.  I had her evaluated by EI a few months later, and they said she had "atypical development," but no delays.  She qualified for services, but they didn't offer any services that they thought would help.  We had her evaluated by the school system right when she turned three, and she scored very low on adaptive functioning, but very advanced on everything else.  Got our first ADOS at five, and started anxiety meds shortly thereafter, which helped immensely.  But....anyway.  Your description of your daughter just sounded so familiar to me.  

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11 minutes ago, Terabith said:

Yeah, I have a kid who has passed the ADOS several times, despite clear symptoms.  The psychologist who gave her the first ADOS, when she was five, read the notes of the person who observed her at school and said, "This is a clear cut case of high functioning ASD."  But then she scored a ZERO on the ADOS.  He was flummoxed.  And we were flummoxed for years, because this happened over and over.  Everyone who spent time with her (and knew autism) said, "She sure seems like she's on the spectrum."  But she tested fine.  She even spontaneously offered to share the snack with the psychologist during the break part of the ADOS.  She knew all the right things to say and do.  She pretended like a champ.  But the older she's gotten, while she copes better and does better in pretty much every way, the more comfortable people have become with saying, "It doesn't matter what the ADOS says; she ticks every box."  I think smart, verbal girl ASD just looks different.  

She's had a medical diagnosis for years now.  The psychiatrist just put it in her chart, regardless of ADOS results.  But it doesn't make it easier to get services.  I think I'd be tempted to ask the private person if you can still get a dx if you need to access services, even if she passes the ADOS.  

If I recall, though, I think a two is on the border.  Like I think 0-2 is no autism, and 3 is where they start saying autism.  So she might be closer to that line than you think.  Like I said, my kid scored a zero every single time, but still meets the criteria.  

 

Sigh. Don't even get me started about dd7's testing... When I mentioned her appt with her the day before, she brought me paper and asked me to write down what she wanted to remember to tell her psych. It went like this (and I know for sure, because she made me write it down!):

It's hard to understand people. In public, in a group, I'll say stuff like, "Yeah, yeah, totally!" But I'll walk away from the group thinking, "What just happened? I don't understand what's going." When I get in trouble for being mean, I don't understand how or why I got in trouble and I'm sad that people don't understand. I'm having a good day and all of a sudden I'm in trouble, but I feel so left out because I don't understand what I did or why they're so upset. It's hard because my brain just doesn't understand things. I feel left out because my brain doesn't understand things that other people understand. And even the things I do understand, I can't do in public because my brain gets so confused around people.

Then, there was right after her ADOS:

Me: So what'd you talk about with the Dr?
dd7: Oh, you know, I just told her about all my friends and how great they are and how much they like me.
Me: .... ..... Why?
dd7: Oh, I don't know. The other stuff is kind of weird to talk about.

Suffice it to say that I'm not holding my breath about her ADOS testing showing anything...

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24 minutes ago, 4KookieKids said:

her ADOS

I think you have the explanation right there. And yes, the private psych will override that if they think the diagnosis fits. Also there can be differences in the skill level of the ADOS teams. It's super cool that your school was trained, and I LOVE seeing this. But, you know, just roll with it, wait, see what happens. If you come in with a private eval from a very experienced person who gets a very different score, that's going to get really interesting really fast. It could happen. Or it might not. Wouldn't be the first girl to get an ASD diagnosis in spite of ok ADOS scores. 

I would say just wait. Go eat cheesecake. Or go to a movie. Or go work out. Maybe skip the cheesecake, though I'm in favor of cheesecake. Or come visit me and bring the cheesecake and I'll eat it. I wouldn't want you to gain weight with all this stress, so I'll help you there. :biggrin:

Keep us posted! The waiting is so hard. What's the timeline on the private?

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6 hours ago, PeterPan said:

Keep us posted! The waiting is so hard. What's the timeline on the private?

 

5 more weeks until feedback from the private psych! Feels like eternity!! lol,

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