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What's the deal with crossing the midline?

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I shared a cute video of my 3.5-4 yo coloring, because I thought it was funny how she switched the crayon from hand to hand every 5-10 seconds. Several people pointed out that she's switching every time she colors on the other half of the paper, so she's not crossing the midline, and that this is concerning. She does it with scissors too -- instead of turning her paper so she can cut with the same hand the whole line, she cuts half way in on the right with her right hand, switches hand, and then cuts halfway in from the left side with her left hand. She does it while eating too (right hand to eat food on right side of her plate, left hand for left side).

So now I'm left with wondering why it's a problem? Is it not normal developmentally? Granted, I didn't notice it in my other three kiddos, but why won't she just grow out of it? Are kids supposed to have a handedness by this age? Do I really need to get her set up with an OT? We just got two other kids *out* of OT, and I really don't want to have to add more appointments back into our schedule.

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What is behind the midline? Relates to how the brain works. Where the left side of our brain, controls the right side of our body/head. With the right brain, controlling our left side.
But these sides don't operate independently?  Rather a connection needs to be developed, which links them together.
Though the typical way that this begins to develop, is with crawling. Where a 4 point sense is developed, of where each leg and arm positioned. In relation to each other.

When she walks, does she swing her body around. From side to side?  As this is typical of not being able to cross the midline.
Though exercises to develop it, are fairly simple.
Which importantly, are done with the eyes closed.
What they involve, is using the a finger/fingers on one hand.
Touching various point on the opposite side:
Such as the wrist, elbow shoulder, The hip, knee and foot.
Then the nose, ear and eye.
Also, have her try to tip the fingertips of both hands together.
When this is practiced daily for a few minutes.  It will gradually develop a stronger connection between both sides. To start with, she will probably be guessing where these Points are. But slowly she will develop an internal mental map, that crosses the midline.

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I don’t know the age levels, but my older son had problems with crossing the midline into ages 7-8.  

One problem for him was that his eyes would “jump” in tracking when he crossed the middle of a page.  This would cause him to lose his place in reading and was very frustrating. 

For him it also impacted his swimming ability and made it very frustrating for him.

It also made it difficult for him to do things like dribble a ball.  

It made him have a lot of frustration with common kid activities in Sunday School, with music activities, with art activities, with sports activities, etc.  

He started OT for this at the end of 1st grade when he was about 7 1/2.  

Another thing is that this can go along with autism.  It doesn’t go along with autism for my son who has autism.  But for my older son I got a lot of comments that the way he was, they usually saw with kids who had autism.  

Another thing is — there are theories about how it helps the left and right sides of the brain work together and communicate.  This is supposed to be very desirable and help kids in learning.  I personally can’t say I saw any benefit this way, but I did see it in activities, it made activities go a lot better for him.  It helped him in a lot of ways to be more successful in activities.  But as far as learning — I didn’t see it.  But it is something a lot of people say and I think it is reputable.  There is stuff about doing cross-body movements is supposed to help with self-regulation for kids who have a weakness this way.  That is — getting into elementary school aged kids. 

I don’t know what developmental milestones are for such a young child.  

 

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2 hours ago, Lecka said:

er thing is that this can go along with autism.  It doesn’t go along with autism for my son who has autism.  But for my older son I got a lot of comments that the way he was, they usually saw with kids who had autism.  

 

 

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. 

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24 minutes ago, 4KookieKids said:

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

Cross-body work is often difficult for kids with developmental vision issues. I think the same brain glitches can cause both. 

There are a few people who are good with both hands, but they still usually have some kind of hand preference. My mom is good with both hands, BUT she has convergence problems, and I think doing some things with the "wrong" hand is a direct compensation for that, particularly given that most of the things she does with her non-dominant hand are things that require some kind of aim (golfing, batting for softball, etc.). 

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Okay, first I think there are things you mention that sound like autism red flags.  Saying he doesn’t want to play with other kids is very much something my son who has autism will do.  

But for my son who doesn’t have autism.... okay, he does have autism spectrum traits, but I think his lack of diagnosis is solid.  I took him when he was 9, and he did have observations from public school, and it was known he had a brother who has autism, etc.  Anyway.

Okay, I saw on your other thread that your daughter was frustrated over being asked to eat meat on the other side of the plate.  

This frustration could be happening so easily in her dance class.  I would hope not in pre-school Sunday School.  But in dance class — there could be actions here and there that are very frustrating to her.  Frustration for my son would lead to a horrible fatigue.  The horrible fatigue would lead to disliking the activities.  Disliking the activities would lead to being less interested socially in some ways.  

He did always like free play at the park and find kids to play with at the park.  He had an articulation delay also (on the severe side though) that also effected him being able to interact with kids sometimes, and he would be very frustrated if he wanted to suggest some play idea and kids would not know what he said.  Anyway — when that was better he did always do great playing at the park, and would always find kids to play with.  We also had kids we met at the park but he liked to just go and play with whatever kids would be there.  

But at the same time if he would have just a few times in an activity of not being able to do something easily, it would make him hate the activity.  He became very unwilling to try new things.  He would do things like sit out instead of try something.  

I am a bit shocked how well he is doing socially now in middle school.  His confidence is up in a lot of ways, and it seems like so many activities for this age can be based on just talking.  Kids he is friends with don’t want to play any games with a ball, and my son is also confident enough now he will play around with basketball and not mind if he is a bit bad at it.  He is also not as bad as he used to be.  

The only thing I ever heard in pre-school age for him, as far as this, was with cutting with scissors.  He could cut (he’s right handed and was from a young age) but he had trouble moving the paper around with his left hand.  So it wasn’t that he couldn’t open and close the scissors, but he would have a lot of trouble with cutting shapes.  

Anyway — it can effect kids socially, by making it frustrating when they are supposed to be doing something with a partner that is frustratingly difficult.  Getting to that point can make a whole activity seem frustrating, or have anxiety like “maybe it will be too hard this time like it was last time.”  Getting to that point of it being too hard, or getting into fatigue, is really bad.  

I would also say, I don’t think it was this way when my son was pre-school age.  It was more when he was older, I would guess 7-8 and then for a while.  

For a while it seemed like a lot of boys liked sports or wanted to play a ball game instead of playing on the playground, and my son would not want any part of it, and partly from a lack of confidence.  He would have an attitude like “I don’t want to play with those kids anyway” and I can honestly say we don’t see that attitude with him now.  

But he definitely would refuse to participate in activities when he was between probably 7 and 10.  There was more than just this, because he also had sensory sensitivity, he also had some anxiety about some things, etc.  But when there are several little things it can really add up.  

But with my son, he had a hard time with arts and crafts and he had a hard time with doing hand motions with music.  He had a hard time with any “keeping rhythm” activities.  Well — those are supposed to be the fun things at a lot of children’s activities.  It is not an easy situation to be frustrated by what is supposed to be fun.  

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Some things with our church were also a really poor fit for him.  He was supposed to play a wood block or something and the Sunday School teacher was frustrated with him.  There was also a lot of practicing for the Christmas pageant with hand motions and he would have a hard time.  I did not realize at the time, I am sure they would have made changes for him!  But I did not realize.  

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Oh, and the thing is, things like dance classes and music are really good for crossing the midline.  It is built in to a lot of little kid activities.  It is really good.  

It’s only a problem if it’s too hard and the child is frustrated.  

A lot of OT can be about getting kids willing to participate in things, with getting skill and comfort/confidence higher.

There are also time that kids take private lessons or take an easier class.  

My younger son is appropriate to take special needs versions sometimes.  

My older son isn’t, but he can do much, much better when he is on the older age range for an activity.  

Any activities are great when they are working, though, and very recommended.  It’s just at a certain point, kids may not be getting anything out of it, or can feel too frustrated.  

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6 hours ago, Lecka said:

Oh, and the thing is, things like dance classes and music are really good for crossing the midline.  It is built in to a lot of little kid activities.  It is really good.  

It’s only a problem if it’s too hard and the child is frustrated.  

Any activities are great when they are working, though, and very recommended.  It’s just at a certain point, kids may not be getting anything out of it, or can feel too frustrated.  

I think this just blew my mind. (I'm pretty sure your comments often blow my mind!! lol.)
She was so desperate to start ballet this year (spent 6 months asking! at 2.5 yo!!), and she's spent the entire time after the first month not wanting to go anymore. We've been scratching our heads trying to figure out what happened, talked with the teacher about what's going on in class (we watch the class, but didn't know if we'd missed something), and going back and forth on letting her quit (their show is in a month and she wants to be on stage with the nice costume, despite not wanting to go to class) since she's only 3. It's hard for us to know how much to follow her lead and if she'll regret it if we did let her quit. But I never realized I guess how much she struggles with the midline thing and it never even occurred to me that the class might just be too hard for her (since it's super age appropriate and fun -- so it's not like it's too hard for most 3 yo's, but maybe just too hard for her). I'm not sure I ever would've thought of this. 

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I did some BalavisX with ds and then an OT finished it out, going to the hardest skills. After that the switching hands gig stopped. I would get an OT eval and sure get ASD evals. If that question is being asked, it's time. The stats on parent gut are HIGH on identifying ASD and the parent gets it before practitioners. 

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On 2/4/2019 at 4:40 AM, Lecka said:

Okay, first I think there are things you mention that sound like autism red flags.  Saying he doesn’t want to play with other kids is very much something my son who has autism will do.  

But for my son who doesn’t have autism.... okay, he does have autism spectrum traits, but I think his lack of diagnosis is solid.  I took him when he was 9, and he did have observations from public school, and it was known he had a brother who has autism, etc.  Anyway.

I'm curious, besides not wanting to play with other kids, what other red flags you see in her situation? It's so hard for me to distinguish between what's normal 3 yo moodiness and what are actual red flags. And I think that when I can't articulate my concerns very well, then we get the shrug off as me making a mountain out of a mole hill. And only later do I realize that I had other genuine concerns but now feel like I've lost my opportunity to bring them up. 

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She is very verbally advanced, or it comes across that way.  Along with some other things, it’s a huge red flag to me.  It is a very strong Asperger-type thing when there are other red flags, too.  That’s my opinion, but it is pretty big to me.  

She has a sibling with autism.  This is a large risk factor.

She has said she would rather play to the side with a toy, than play with other children.  Is she at an age where parallel play is still a thing? It sounds like she’s not or why would the teacher say anything about it to her (I’m assuming the teacher invited her to come play with other kids or something like that).  If this happens once, it doesn’t matter.  If it’s a pattern, it is a huge red flag.  It is not necessarily an autism red flag but she is not too young to be falling behind on social skills, if she is not participating.  It sounds like this is or could be the case.  I was told to look at peer things with non-siblings.  

Your husband has concerns.  Maybe he’s wrong about autism but he’s concerned about something he is seeing.  

You mention fits/meltdowns and rigidity.  Okay, your idea of what is in a normal range on this is probably very skewed if you have an older child who has autism, whom you would describe as having rigidity or fits/meltdowns at a similar age.  If your older child was actually a really chill kid, I wouldn’t think this.  But if he wasn’t, your daughter could be much less rigid or have much less intense or less frequent fits/meltdowns, and it could still be a concern.  Some kids really don’t have behavior issues too much, or comparable to some other kids.  I think this comes across like — it doesn’t sound like it is a red flag, but it doesn’t mitigate anything that she isn’t having worse problems this way.  Or maybe she is having worse problems but..... you already know tons of coping techniques from your older son, and are already doing them, and also maybe it doesn’t register to you.  I think that’s hard to say.  Also kids do just act this way.  Also kids act this way and it’s not necessarily autism versus something else.  There are a lot of reasons kids can be frustrated or have poor self-regulation.  

 

 

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https://www.socialthinking.com/Articles?name=WhySocialThinkingDevelopedPlayScale

This article talks about “peer-based interactive play.”  

The only way I can see that your daughter is not having issues here, is if she is so verbally advanced that she is in a higher-age Sunday School, or it’s mixed-age but she is younger, if she “comes across” like she is older because of her verbal level.

That’s possible, and I don’t know the age ranges for when kids are supposed to love on from parallel play.

But there are even developmental goals within parallel play, of kids being interested or watching or noticing what other kids are doing and how they are playing with the toys.  

I think this is the thing where, it’s the smoking gun.  I think this is the thing where if you mention it, it’s supposed to ring bells for people that it could be autism.  

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This is my experience, but there was a very verbally advanced, precocious little girl at our last church, and she loved to play with my daughter.  I think she might have been 3 or maybe even 4 years younger than my daughter.  She was moved up into a higher Sunday School class.  Like — I think as soon as she was potty trained she moved up.  

But she played great.  She was very interested in what other kids were doing.  She loved my daughter and my daughter liked to play with her, too.

She wasn’t having any problems in the younger class, it was just obvious she was ready for the Sunday School lesson and activities.  

So I don’t think being advanced verbally is a mitigating factor.  I mean, it is, because maybe the other kids are boring or don’t want to play with a younger child.  

But I think it’s very easy to say that when it’s not the case, and then, really, the child doesn’t want to participate at all?  Or it’s to the point it’s noticeable?  

I understand it’s a problem, but I definitely don’t think it means to write off lack of play or interest on this basis.  Not across the board.  I think it is different if it’s a factor in some things not being a good fit while other things are a better fit.  

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Oh, if she is large for her age and verbally advanced, then I do think it’s possible she’s being mistaken for an older child, and then — telling the teacher she doesn’t want to play may not come across the same way.  

Adults are usually pretty attuned to what they would expect kids to do, when they are in a Sunday School group, though.  There’s just a range of what the kids are doing.  If she’s not really in that range because of age/size then it’s different, but if she’s in the range and stands out as not being as interested in other kids, it is really a red flag.  

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https://www.cdc.gov/ncbddd/autism/hcp-dsm.html

Look at A. 1,2,3.

Absence of interest in peers.  This doesn’t have to mean 100% lack of interest, but if it’s a noticeable thing that could be enough.  I was told not to count siblings.  

Failure to respond to social interaction.  If the teacher (and it just comes across this way to me) is making a bid for your child to join play and your child doesn’t join, I think that is failure to respond to a social interaction.  I’m not sure but it’s my impression.  

Those are the kinds of things that fit (or might fit) the autism diagnosis.  

For the second section, if she is rigid and has sensory issues, that could be all it takes.  You don’t have to be excessive on those.  

It’s not that I think it’s autism, I’m just saying this is how it could be.  It doesn’t mean much.

But if you see from the diagnostic criteria, they are looking a lot for social things or interaction things.  They aren’t looking for crossing the midline, advanced language, etc.  

They are looking for social things, or they should be.  

Some will write kids off because they think they are too advanced verbally to have a problem, or they don’t actually look at peer interaction.  In an office visit they don’t see peer interaction.  But that can be what you need to say and what they need to pick up on.  This can be harder for someone whose child isn’t in daycare or pre-school, because the doctor can be used to hearing about teacher concerns from pre-school or daycare.  

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Those are all such interesting ideas, and I really appreciate you taking the time to write them all out. It gives me lots to think about. 
 
In particular, as I've been reading more about autism in girls, I've been reminded that we considered an evaluation for dd7 for a while as well. She has major flags of special interests (was dancing ballet 3-4 hours a day at age 4, still spends 4-6 hours a day watching or dancing ballet four years later), social struggles (struggles to make friends, relates better to younger girls, studied imitation of other girls, meltdowns after group events, lots of foot-in-mouth situations), sensory issues (she's in OT already), and a number of comorbidity concerns (dx'd with anxiety and depression at 6, concerns over bipolar, dyslexia at 7, but the anxiety and fear are the worst ones here), and brain function I can't even imagine (hears when violin is tuned correctly or if it's off even by a fraction of a note, without even using a tuner,  was able to transpose a new song on the spot into six other keys just by ear, one right after the other, without any knowledge of key signatures, on the same day as her teacher taught her what transposition was), etc.
 
On the other hand, she's very flexible if our plans have to change and is unlikely to lose her cool, she's an excellent liar, she seems to understand a fair bit of social stuff, because she's extremely good at manipulating people to get her way, she often shows real insight into people's motives when discussing a story or why someone acted a certain way, and she makes good eye contact, picks up on someone else being upset, etc, which are all things ds struggles with that are supposed to be more typical markers of autism. So we never pursued a dx, and just figured that some flags don't always mean autism. 
 
But you're absolutely right that I think I normalize a lot of flagging behavior, because I homeschool and it's just our daily lives. Until ds was dx'd with autism, I had no idea that running around the house and howling like a wolf for an hour wasn't typical for young children. No idea at all. lol. So my idea of what's normal and expected is all out of whack, I know!!

Dd3 definitely struggles with any sort of peer interaction. It's helpful that you point out that siblings don't count, because I would've said she does great with her siblings and "only" struggles with kids outside the home. Sometimes, a teacher tells her to join in and she does; others the teachers tell her to join in and she just says, "No, I don't want to be with you all." She's super verbal (more so in the last two months - I noticed that all of a sudden she went from a sort-of normally talking 3 yo (she was a bit late because of partial deafness and had tubes put in around two years of age, so before that she didn't talk more than 15-20 words, so she got "caught up" between ages 2 and 3 I feel) to a 3 yo who is speaking in 15-20 word complex sentences and I was talking with my husband about how she must have had a super major brain leap! lol.), but it's unclear to me how rigid (or not) she is or if there are sensory issues, since she throws tantrums at very unexpected times and I just chalk it up to being a super emotional/volatile, somewhat spoiled youngest sibling. 🙂 Like, yes, she's clingy and cries and buries her head in my shoulder and refuses to let go of me when I go to drop her off somewhere, and yes, this is a new phenomenon in the last three months, but she's also 3, you know? lol. 

It's a lot to think about, and I really appreciate you giving me extra things to think about so I can think more big picture. It's tricky, because I don't think any one thing is really enough to be concerning - but the lot of them together just feels off. But anyone who's worked with my dd's have only ever briefly considered autism before disregarding it (it comes up just because of ds already having the dx), citing their verbally advanced speech and relatively good eye-contact/social interactions. So I don't want to borrow trouble and see autism where there isn't. But I also want to feel good about feeling like I've done my homework, and we've come to the right conclusion after reading all that we could've and learning all that we could've. In particular, I'm not sure I trust anyone in town to actually know about autism in girls, and I expect them all just to chalk my concerns up to overthinking things and that my girls are just fine and young/immature/etc (maybe just because our psych already has, even without doing a full eval)? When I look at normal autism checklists, ds9 flagged them all in the most obvious ways. Those same checklists do not flag my girls as possible autism. They flag a lot more on the checklists I see for girls with autism -- but those don't really seem like they have a body of research behind them or are as in line with diagnostic criteria and such. It'd be nice if I felt like there were someone around who I could really trust to know about it with girls and they could really rule it out for me.

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PS. Sorry for anyone else following this.  I realize that we've gotten completely off the topic of midline stuff.

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When the people working with her note her good social interactions, is it with peers or with the person (an adult).

It needs to be with peers, peers who are not siblings.  

Do the people working with her see her in a small-group setting with other kids?  Do they see her in free play with other kids?

If not and she has issues this way, it is something where, they just aren’t going to see it

And then they rely on hearing of a teacher concern.  A teacher concern (from daycare or pre-school) is how a lot of kids get flagged.  

It’s known for verbally advanced kids to do well with adults, but not necessarily with peers.  This is brought up in the Tony Atwood book about Aspergers.  

Its why for some things they want to do an observation of the child in a peer setting.

Its also why you see some things written specifying “peers,” because kids may be doing fine with adults and family.  This is famously a reason why parents can be shocked when their kid goes to Kindergarten and autism is brought up, because the kid could be doing fine with family and adults.  

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That long of a time for that young of a child — I don’t think that is typical.  I don’t know but it sounds like it’s a pretty long time to me.

Also, you say she is in OT for sensory issues (or is this a sibling?).  That’s it.  That’s sensory issues.  She doesn’t have to have special autism sensory issues.  Just sensory issues.  That is enough for that #4.  That is my impression at least.

And that many hours on ballet really sounds like a special interest to me.  

I think the crux of it though is the social/peer part.  

You are mentioning things that are concerns with saying she doesn’t want to play.  But that’s not like it’s definitive.  

I think with the people who work with her, maybe mention/describe some of that.

If you could have her observed in a group setting that would be ideal.  That would be the most ideal thing.  I don’t know if you could get video?  

Really for autism — for young ages they are looking a lot at peer play. 

For all the other things — if her peer play was good, it could all be fine.  Her peer play definitely doesn’t sound “good.”  It sounds like “well, is it that bad?”  Or, “this is just her personality.”  Well, for a spoiled younger sibling who is verbally precocious, it is still expected to show some positive social skills.  I mean positive like — there is something where you can look and say “look, she’s initiating.  Look, she’s joining play on her own.  Look, she is looking interested in other kids.  Look, she is playing together with another kid.”  Those are skills she could be showing.  Maybe not exactly skills, but developmental steps or something.  

If she is always the kid that the teacher is needing to specially invite to join the group, that means she isn’t listening to group directions or noticing what her peers are doing or feeling motivation to join her peers.  Or — something.  It could mean those things, and those are super-autismy things, if that is what is going on (again there are other reasons kids do things, or  just act like kids).  

Really with your new post it sounds like even more red flags.  

Even the professionals who say “it’s nothing, look how verbally advanced she is” comes across like a red flag, because it is so common to hear that with autism when they do not look at peer interaction.

That’s basically a reason that now peer interaction is emphasized so much.  Because a lot of kids would be missed when it wasn’t looked at. 

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I’m sorry- my last long post was a mix of notes on my 7 yo (first part) and my 3 yo (last part). I’ve got lots of thoughts going all over the place!! Sorry for being confusing.

i will think about taking videos of them in class. That’s a great idea. Might give me a lot more to work with than just my own recollection. 🙂

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I would note that peer interaction for a very bright child might need to be another very bright child. Lecka indicated at least some of that in talking about kids who are particularly old or young for a group's age range. I assume she's had some kind of evaluation since she's been diagnosed with a few things, and she sounds gifted. Has she done any kind of gifted enrichment classes? My son did some via a local program not affiliated with school, and he came across as everything from very typical to really unusual in that crowd, lol! In classes where he seemed typical, the structure was very supportive. In more free-form classes, he was a mess.

Has she had language testing beyond the WISC and WJ? Stuff like the Test of Narrative Language or Test of Problem-solving. My 2e kiddo who has autism can DISCUSS all kinds of things that he doesn't pick up on his own outside of discussion. He picks up on what he's supposed to be noticing via that discussion, lol! Then, he has trouble writing those things down or writing them down in an organized manner. If he has to do any kind of thinking/analysis questions on his own that don't involve, say, his physics text, he struggles massively. He struggles just to tell a story. We would not have known this if we had not done additional testing. The only other clue is that his solidly gifted range verbal IQ lags behind his visual-spatial IQ. Not hugely so, but it's there. (And it seemed reversed in earlier testing due to coordination issues like crossing the midline and due to attention. As soon as he had VT and got on ADHD meds, his non-verbal IQ hit the ceiling on the test. His verbal IQ improved with meds too, but was definitely passed up by the non-verbal stuff.)

 

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3 hours ago, 4KookieKids said:

Dd3 definitely struggles with any sort of peer interaction.

Her need for support sounds more significant than for your older dd. I think you have a pressing situation there and agree with Lecka that you ought to be pursuing evals (because your dh is seeing it, because you have lots of red flags). But the reason to do it NOW is because early intervention is where it's at. The outcome is SO much better with early intervention. If you don't, she's going to be 6, 7, 8, 10 with the same deficits and then you're scrambling for options. If you start now, the system knows what to do with her. You could call EI, get her evaled, get play therapy (Play Project, Hanen) and love it. Those interventions dry up around 5-6 because they assume the ps takes over and they assume the kid HAD those interventions. So with my ds getting diagnosed at 6 he was screwed, always behind the 8 ball, always being treated with this assumption that he must not have NEEDED those thorough interventions, when he really did.

I also think you're thinking of spectrum too homogenously, rather than allowing for levels of support and varieties. My ds has a language effect and his language drops when he's stressed, etc. Your dc don't seem to have any effect on language, cool. But that doesn't mean it's not spectrum. As Lecka said, you have so many red flags, it's glaring. And for your oldest, check out the Social Thinking article on communication profiles. You've noticed a lot of really good things. There's sort of a grey zone where severe ADHD merges into the spectrum. It's not like a tight line or yes/no. It's more like we keep ticking boxes, it's there. So you're going to end up addressing what's there, because whether they call it severe ADHD with social delay or ASD1, it really doesn't matter. Either way, the interventions are the same and either way she needs them. What gets you into pickles is if you say well it's ADHD so she doesn't need social intervention or this or that. The interventions, as the ADHD becomes more severe and the ASD support level drops, are the SAME. So the key is to DO them and be honest about what you're seeing. Some of the more subtle deficits become more apparent with time. My ds, because of his gifted IQ, could pass pragmatics tests at 5-7 that he couldn't pass by 10. Super bright kids have this ability to mask, to copy, to memorize, so sometimes it takes longer to become apparent. 

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I think making a video is a great idea.  

Keep in mind, if possible you would want both structured and unstructured.  

Structured might mean a teacher-led activity.  Unstructured might mean free play.  

I can never figure out how to take video without my kids just talking to me or staring at the camera or something, so I am impressed if you can.  But if you can, I think it could be great.  

And for you, you can look at things like is she looking at other kids, does she join play, does she respond, etc.  

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I'm missing the point on the videos. If you want her play and interactions analyzed, you want an ADOS. Then it's standardized. A psych has little to make of your random video and most I saw ignored all the real life stuff I gave them like that. They'll spend time critiquing the teacher, saying whose fault it was, and all sorts of other stupidity. The ADOS is standardized. Or an RDI eval where they video and analyze joint attention, etc. can be good. We've done that, yes, highly recommend. But for the rest I'd just make the appointment, get the ADOS run by someone who is really experienced with it (or by a team who are all ADOS-trained) and be done with it. Ironically, some of the ps in our area now have whole IEP teams that are ADOS-trained. That kicks butt in my book. Otherwise people are seeing stuff and they have NO CLUE what they're seeing. I kid you not. You just wait another year or two and you're gonna have your own stories.

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13 minutes ago, PeterPan said:

I'm missing the point on the videos. If you want her play and interactions analyzed, you want an ADOS. Then it's standardized. A psych has little to make of your random video and most I saw ignored all the real life stuff I gave them like that. They'll spend time critiquing the teacher, saying whose fault it was, and all sorts of other stupidity. The ADOS is standardized. Or an RDI eval where they video and analyze joint attention, etc. can be good. We've done that, yes, highly recommend. But for the rest I'd just make the appointment, get the ADOS run by someone who is really experienced with it (or by a team who are all ADOS-trained) and be done with it. Ironically, some of the ps in our area now have whole IEP teams that are ADOS-trained. That kicks butt in my book. Otherwise people are seeing stuff and they have NO CLUE what they're seeing. I kid you not. You just wait another year or two and you're gonna have your own stories.

I’m a bit confused on this because someone gave one of my kids an ADOS a few years ago ( we were participating in a research study at a local university) – NOT  one of my children being discussed in this thread – but I thought it was administered by an adult, and thus would not notice any social interaction issues with peers. It was just done in my home, with books and toys and dolls . Is that the same thing as what you’re saying?

ETA I’m just wondering because dd3 sometimes does just fine with adults (though only sometimes).

Edited by 4KookieKids

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The ADOS is between a child and an adult. 

Hmmmm.  This isn’t exactly what I mean.

I think of the “blowing things off” as happening way before the point of actually conducting an ADOS.  

However, if you look on spectrumnews.org, it will say some girls are not identified by the ADOS.  

I have no knowledge of kids not being properly identified by a fairly in-depth evaluation, firsthand.  I just don’t know anything about it.

However — as far as people being told “don’t worry,” or not even really evaluating for autism after screening it out in some kind of shallow way.... I do hear about that.  

They might be looking for some things to point them towards “let’s look more at autism” and then that is where I think things are more of a problem, or definitely a problem.  Adults just getting an impression, that kind of thing.  

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To say further.... you might want to bring that up, or look for an eval that is not just the ADOS.  Those are options.  

The ADOS is the gold standard, but it’s not the only way to be diagnosed.  

It’s not something I know a lot about, though.  

 

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Oh, for the videos, I thought op might show them to people she sees who are saying “it’s not autism.”  I’m not sure she is really close to pulling the trigger on an eval.  But she could see what they say.  It’s just a thought.  

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Parents see so much more of kids with spectrum, so if you show the videos to PARENTS, they'll say yes that was what my kid was like. But psychs, school teachers, etc. see kids in such limited doses that they miss stuff or have this over-arching philosophy they put on top of what they see. So I had a (and I really don't have nice words for him) $$$$ neuropsych tell me that my ds, who flapped when happy/excited, was reciting whole pages from audiobooks verbatim, on and on, was doing all this because he was gifted. The psych just had a paradigm. And I've had ps intervention specialists in my home who saw everything, tick down the list, from the ADOS, and they had NO CLUE what they were seeing. But I had a parent watch video of my ds at age 5 and she's like yeah that's what my ds did at that age, you should have evals. So I personally think that these diagnosing professionals aren't quite as knowledgeable as we endow them as being. They see a lot of kids, but they see them for snippets. We LIVE with our kids. 

Yeah, you read the articles on girl spectrum and boy and it's pretty clear it would make any tool fallible and result in late diagnoses. On the other hand, this 3 yo sounds like she's not in the grey zone but is all the way there. The other parent is pushing for it, and parent gut is more correct, statistically, than the psychs.

 

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51 minutes ago, Lecka said:

Oh, for the videos, I thought op might show them to people she sees who are saying “it’s not autism.”  I’m not sure she is really close to pulling the trigger on an eval.  But she could see what they say.  It’s just a thought.  

 

On the contrary, I already did an intake with a local psych office (someone new who's supposed to know a lot of stuff about autism and specializes in the ados) and I have an appointment with my ped on Wednesday morning to discuss midline, autism, whatever else I think of. Part of the reason I was asking what you took for red flags are that I think some of these things seem so normal to me, that I don't actually know what the red flags are. It all seems like something that someone else would gloss over. So I'm preparing notes to take in to the ped, and was going to make sure I include anything you thought was a flag. At this point, I trust you and PeterPan enough to take what you say seriously. 🙂 Plus, there's the issue of potentially losing insurance for a while in a month or two, so I might as well act and eval now while I actually have good insurance.  

I'm going to talk with them about both of the girls that I've questioned about. If they say it's not autism, then that's fine. But I think I'd rather just do the eval than continue to waffle. I fear that they're going to say it's not autism, even if it is, because of gender differences and giftedness. But there's nothing I can do about that, and I've done the best research I can. I just can't seem to uncover anyone who does gifted, girl autism near us. Shoot, when ds was getting eval'd, I couldn't even find someone who did gifted autism near us. 

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6 hours ago, kbutton said:

I would note that peer interaction for a very bright child might need to be another very bright child. Lecka indicated at least some of that in talking about kids who are particularly old or young for a group's age range. I assume she's had some kind of evaluation since she's been diagnosed with a few things, and she sounds gifted. Has she done any kind of gifted enrichment classes? My son did some via a local program not affiliated with school, and he came across as everything from very typical to really unusual in that crowd, lol! In classes where he seemed typical, the structure was very supportive. In more free-form classes, he was a mess.

Has she had language testing beyond the WISC and WJ? Stuff like the Test of Narrative Language or Test of Problem-solving. My 2e kiddo who has autism can DISCUSS all kinds of things that he doesn't pick up on his own outside of discussion. He picks up on what he's supposed to be noticing via that discussion, lol! Then, he has trouble writing those things down or writing them down in an organized manner. If he has to do any kind of thinking/analysis questions on his own that don't involve, say, his physics text, he struggles massively. He struggles just to tell a story. We would not have known this if we had not done additional testing. The only other clue is that his solidly gifted range verbal IQ lags behind his visual-spatial IQ. Not hugely so, but it's there. (And it seemed reversed in earlier testing due to coordination issues like crossing the midline and due to attention. As soon as he had VT and got on ADHD meds, his non-verbal IQ hit the ceiling on the test. His verbal IQ improved with meds too, but was definitely passed up by the non-verbal stuff.)

 

She's not done enrichment classes. While gifted, she doesn't fit in with a lot of gifted stuff at this point, since she's dyslexic and can't read proficiently yet.  I feel that the reading struggles really turned her off to most things that are academic (her math started lagging, etc.), and she really turned to music as something she wanted to focus on. 
She's had the ELLA for language testing, but I don't think she did anything narrative language. I'd have to go back and look at what her scores were. She does have vision issues (even q-bitz jr is super challenging for her). 

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I don’t know if this is a good idea, but I tend to think — tie things in to the diagnosis.  

The ballet thing, as really nice as it is, might also fit some diagnostic criteria.

Same for rigid, maybe try to think of examples.

Talk about the social things, choosing to be isolated, etc.  

*I* think the “crossing the midline” means something or might mean something, but it’s not on any diagnostic criteria for autism.  Or, it’s not in current DSM 5.  There have been (iirc from reading Tony Atwood book) people who wanted to include motor things in diagnostic criteria for Aspergers.  

I think bring that up if you might get an OT eval!   But it might not be the strongest thing to say for autism.  

Ideally i someone think you need to advocate or make a strong case, but I think you do, especially when you aren’t going to have teacher or daycare or pre-school input.  If she was in that setting and was isolated with a special interest for hours a day, it would certainly be observed.  I think it’s harder with a child not in childcare.  It would also be more obvious how she was doing with transitions or rigidity compared to other kids.  

I think it delayed my son’s diagnosis, even though gym daycare was mentioning things to me.  I did not communicate their comments.  

I don’t think it’s better to be in group care.  I think it just makes it harder to advocate.  It’s not like being in group care would guarantee anything anyway.

For any peer things, I think highlight how she does without siblings, don’t hedge with how she does with siblings.  Just in how you say things, I guess.  

I don’t know how much free time you have in the next few days (lololololol) but if you have time to look at toddler videos, if you do see anything familiar, it would be helpful and give you terminology to use.  If you don’t see anything familiar, I don’t think that rules out autism.  But if it’s helpful, it’s helpful.  

Here’s a link to videos.  https://autismnavigator.com/. They have redone this website but I think the video library will be the same.  

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18 minutes ago, Lecka said:

I don’t know if this is a good idea, but I tend to think — tie things in to the diagnosis.  

The ballet thing, as really nice as it is, might also fit some diagnostic criteria.

Same for rigid, maybe try to think of examples.

Talk about the social things, choosing to be isolated, etc.  

*I* think the “crossing the midline” means something or might mean something, but it’s not on any diagnostic criteria for autism.  Or, it’s not in current DSM 5.  There have been (iirc from reading Tony Atwood book) people who wanted to include motor things in diagnostic criteria for Aspergers.  

I think bring that up if you might get an OT eval!   But it might not be the strongest thing to say for autism.  

Ideally i someone think you need to advocate or make a strong case, but I think you do, especially when you aren’t going to have teacher or daycare or pre-school input.  If she was in that setting and was isolated with a special interest for hours a day, it would certainly be observed.  I think it’s harder with a child not in childcare.  It would also be more obvious how she was doing with transitions or rigidity compared to other kids.  

I think it delayed my son’s diagnosis, even though gym daycare was mentioning things to me.  I did not communicate their comments.  

I don’t think it’s better to be in group care.  I think it just makes it harder to advocate.  It’s not like being in group care would guarantee anything anyway.

For any peer things, I think highlight how she does without siblings, don’t hedge with how she does with siblings.  Just in how you say things, I guess.  

I don’t know how much free time you have in the next few days (lololololol) but if you have time to look at toddler videos, if you do see anything familiar, it would be helpful and give you terminology to use.  If you don’t see anything familiar, I don’t think that rules out autism.  But if it’s helpful, it’s helpful.  

Here’s a link to videos.  https://autismnavigator.com/. They have redone this website but I think the video library will be the same.  

Yes, I think I was going to separate various observations/concerns by DSM criteria, and I was also going to print out the checklists I've seen for "autism in girls" that the "Ask me, I'm autistic" fb page has, and then just highlight things that describe my daughters. 

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I think that’s a good idea.  If any of the “ask me” stuff fits in a diagnostic category, I might mention that.  If not I would still mention it.  

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5 minutes ago, Lecka said:

I think that’s a good idea.  If any of the “ask me” stuff fits in a diagnostic category, I might mention that.  If not I would still mention it.  

Ok. Will do. I also have at least a bit of leverage, I think, given that we were concerned about this two years ago: https://forums.welltrainedmind.com/topic/636343-interpreting-dayc-2-results/
She was much younger then, of course, but her social/emotional and communication skills were around the 16th %ile then, and while her communication skills have really improved since she had tubes put in and can actually hear now, I think the social/emotional issues just never actually got better, as we were hoping, and may possibly have gotten worse in the last six months.

ETA: She's clearly not "delayed" in the initial sense that I was concerned about two years ago. I would guess she's every bit as intelligent as her siblings. So I'm not really sure why she was globally kind of low at the time. But oh well. 🙂

Edited by 4KookieKids
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1 hour ago, 4KookieKids said:

She's not done enrichment classes. While gifted, she doesn't fit in with a lot of gifted stuff at this point, since she's dyslexic and can't read proficiently yet.  I feel that the reading struggles really turned her off to most things that are academic (her math started lagging, etc.), and she really turned to music as something she wanted to focus on. 
She's had the ELLA for language testing, but I don't think she did anything narrative language. I'd have to go back and look at what her scores were. She does have vision issues (even q-bitz jr is super challenging for her). 

A lot of the gifted stuff we did was not super academic, but we are fortunate to live where this stuff is reasonably accessible (requires a drive, but not a crazy one). It can be hard to access that stuff, so don't sweat it!

https://www.superduperinc.com/products/view.aspx?pid=ella11#.XGtLtehKjIU   It appears that while the ELLA tests a lot of dyslexic stuff, it has a story retelling section. You might look at those results and also maybe see if it gives some good details. I can't find anything quickly that gives a good feel for whether the ELLA gets to the heart of narrative language issues--using "story grammar" to convey the meaning of a narrative, selecting the right details to retell, etc. If it was multiple choice, it might not necessarily get to the heart of things either--my son can reliably locate a reasonable answer, but producing one is another story.

I am sorry she's still struggling with vision stuff. That makes things hard, especially since dyslexics are "supposed" to be good at visual things (seen as a common strength).

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On 2/18/2019 at 5:26 PM, Lecka said:

I think that’s a good idea.  If any of the “ask me” stuff fits in a diagnostic category, I might mention that.  If not I would still mention it.  

Well, our ped referred us for evals for both my 3 and 7 yo, based on what I shared. We'll see what they say, I guess!

I have to say that I watched this video on Autism in girls, and if the place we're referred to knows any of this stuff, I'm about 99% positive my dd7 will get the dx. I felt like every single thing he said about girls up through primary school described her to a T. It was uncanny and almost a little bit creepy because I found myself nodding along to every single point except the tomboy part (and then he mentioned that that often comes later and younger girls are all pink and frilly and ultra-feminine, so it still fit our situation.)
https://vimeo.com/122940958?ref=fb-share&fbclid=IwAR2nhMU4v_y2u8kvhgSFAtjhT75lRGeEMv6N6z_s9QriiXWC9Sozem0JOFY

 

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What an interesting video!  I had never heard Tony Atwood speak before.

I hope the place you are referred know what they are doing, and that the wait isn’t too long.  

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1 hour ago, PeterPan said:

How long will your wait for evals be? That's great that you got referrals so snappily. 

 I have no idea. We already had an appointment with one person for an intake next Tuesday, but it is not the same person as our doctor referred us to. We got referred to a special autism diagnosis clinic at a children’s hospital a bit over an hour away because our Ped really wanted us to see someone that does autism all day every day in order to have the best chance of getting a good eval.  they’re supposed to Be calling us back to set up an appt within a few days, so I’m not sure if I should cancel with the other person I scheduled with (who was recommended to me by an autistic mother-daughter pair I’m acquainted with). 

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22 minutes ago, 4KookieKids said:

special autism diagnosis clinic at a children’s hospital

Yeah, that can be really good. Will your insurance cover it? I agree you want someone who sees a LOT of autism. Now our children's hospital is a teaching hospital and you get these sort of screwy outcomes and stupid things being said. So if you are going to be paying for this or have a deductible or financial hurdles, you can get a private eval with someone who specializes in autism, sure. But surely the referral from your friend is good too? Is autism what the private person specializes in? 

I think docs tend to refer through the hospital system just because it's what they do. It can be 3X the cost of private, so it's more who's paying, sigh. Your youngest needs a really thorough eval, multi-factored, which is another reason he would send you to a clinic. A psych alone will not give you the amount of info you need. If the hospital eval is a team, hopefully your dc would be seen by SLP, OT, behavioral, psych, and more, all in one day. It will give you SO much more info (in theory, hopefully). So when my ds was seen by a neuropsych, sounds great, right? Well that (no nice names for him) had just a screener tool, the CELF, for language. Sensitivity is low, misses lots of language problems. But you get the really detailed testing by an SLP who specializes in language and autism, and suddenly you're getting a lot more data. So that's another difference to look at, whether he was sending you for multi-factored evals, having your dc seen by a team.

Hospitals can also have a 6-9 month wait, sigh. Is the intake for the 7 yo or the 3 yo? I would see what they'll do for you. As long as the person sees a LOT of autism and has a game plan to make language testing and OT evals happen, sooner is great. The sooner eval means sooner intervention. So maybe you keep the intake and see what you see? Maybe talk with that parent friend too and find out more about why they chose them, what services were done, etc. If the appt is Monday it's too late to cancel anyway.

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Yes, I believe insurance will cover it... but I've never had issues with insurance covering stuff, so I don't really know. I don't know how good our children's hospital is, but I don't think it's mainly a teaching hospital. I think autism is also the specialty of the private person, but they're younger and don't have as much experience. I believe the clinic is a diagnostic team, but it doesn't list SLP and OT and all of that on the website, mainly psych, behaviorist, and geneticist. Maybe there are others there that just aren't listed?  It is a wham-bam-done sort of deal at the clinic: 3 hours of eval, and *then* the consult with the parent to discuss results, all in one fell swoop.  We also did not have great experiences with a neuropsych. 

I had no idea that hospitals have a wait list that long. Wow. That's crazy. The intake is for both the 7 yo and 3 yo, as is the referral. Thanks for your thoughts. I was thinking I'd keep the intake appointment, because meeting the person and being able to talk about things face to face is important to me in judging character and whether we're clicking and they're really listening to me and taking my concerns seriously. I just wasn't sure if insurance will cover both evals (though it will be a non-issue if the hospital wait list is 9 months, because we won't be waiting that long!) I'm more skeptical of a large clinic, but that's just me... 

Edited by 4KookieKids
Crazy huge smiley face popped up for some reason...

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Yeah, 3 hours is pretty brief. It's done, sure, and it may be so screaming obvious it won't matter. Some psychs will want to see a person over many sessions. I guess just roll with it. I think your plan to keep the intake appt seems reasonable, as you can still pull back if you have bad vibes. 

It would be interesting for you to find out what they actually do in that 3 hour eval. It might be like 1 hour intake, an ADOS (1 hour) and then an hour of follow-up. And they probably have a really thick  questionaire packet for you to do ahead of time. But for your purposes, especially with that 7 yo, you'd like full IQ, achievement, screening for SLDs and ADHD, and some advice on education, etc. So at this upcoming intake you could find out what he's offering. What tools will he be using to answer the autism question? I would ask upfront. And if he's going to give you IQ, achievement, screening for things, that can be really helpful to. Gives you a way to compare and think through what you need and what the different options will do.

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58 minutes ago, PeterPan said:

Yeah, 3 hours is pretty brief. It's done, sure, and it may be so screaming obvious it won't matter. Some psychs will want to see a person over many sessions. I guess just roll with it. I think your plan to keep the intake appt seems reasonable, as you can still pull back if you have bad vibes. 

It would be interesting for you to find out what they actually do in that 3 hour eval. It might be like 1 hour intake, an ADOS (1 hour) and then an hour of follow-up. And they probably have a really thick  questionaire packet for you to do ahead of time. But for your purposes, especially with that 7 yo, you'd like full IQ, achievement, screening for SLDs and ADHD, and some advice on education, etc. So at this upcoming intake you could find out what he's offering. What tools will he be using to answer the autism question? I would ask upfront. And if he's going to give you IQ, achievement, screening for things, that can be really helpful to. Gives you a way to compare and think through what you need and what the different options will do.

I know that a normal psych can do ADHD, but do they also do IQ, achievement, and all these other screenings you're mentioning? I thought that we got sent to a neuropsych for this last time. But I really despise was not fond of either of the two pediatric neuropsychs we have in town when we saw them previously.  Thanks for this. It's always helpful for me to have a list of things to ask them, and I tend to have brain lapses right when I actually need my brain cells. 

ETA: The clinic says the following, but it seems pretty vague, so I'll definitely have to ask them more:  "child may undergo behavioral assessments, genetic testing, developmental observations, and speech evaluations"

Edited by 4KookieKids

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Yes, a hospital dept like that can do genetics if they think there's a diagnosable syndrome or if they want to screen for potential health problems (seizures, etc.). It's not testing to try to do supplements or anything like what I've talked about but very targeted. If you can get that done by insurance, sure, have at it. 

I think psychs just vary. Sometimes they're surprising. 

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My son went to a 4-hour total children’s hospital eval.  Three hours of eval, and then one hour for them to meet and then talk to us (and they were rotating through families).  

Anyway — we had a very long intake phone appointment previously.  They had a lot of information from the phone call.  We also had a decent amount of paperwork to send them, and they had looked at it before we got there.  My son was starting with special needs pre-school in this time period and we had some paperwork from them. 

Anyway, it worked out very well for us.  

We got a referral for genetics testing and didn’t choose to do it.  Often that is to find out about things like fragile x or to find out if your child has a genetic syndrome that makes seizures more likely.  My son doesn’t have any markers for genetic syndromes or any health issues, and I had so many things to do and that was the one that just didn’t seem worth doing.  A lot of people basically get no result from it, and then it’s extremely helpful for kids who do have a genetic syndrome.  

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I’m going to add, where I lived at the time, there was a long wait for the children’s hospital.

Often kids would have some testing like IQ testing through the school district before the appointment at the children’s hospital, so that wouldn’t be repeated, but they would have those records.  

So for the children’s hospital we went to, they chose what testing to do based on the intake interview and on previous paperwork, and I’m pretty sure that they would do IQ/achievement, but a lot of times kids will already have that from the school district and that would be fine.  

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I will also add, for my son, when we went to the children’s hospital, something we did have was his pre-school teacher’s observations for his social interactions there.  

That was included in his IEP and I’m pretty sure his teacher filled out a form for this eval.  I’m not positive it’s been a while now.  But his IEP definitely included his current social levels and they definitely had that and had looked at it, when we went to the children’s hospital.

So I think there’s some context around a 3-hour eval being thorough and having enough information, because for us they really had access to much more information and in particular they had access to how he did in a group setting from a teacher who was very capable of knowing what she was seeing.  

So — just food for thought I think.  You can think about how you are going to get observations of peer/group interaction.  I don’t think it needs to be any certain thing, but you would want them to have that information.  That might mean for you to notice and take some notes, so that you can provide the information when you get there.  

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.  

Edited by Lecka

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