Got the results of dd's SLP eval today . . .

[Jentrovert]

To refresh, this is the dd7 we discussed re dyslexia. It's a yes on the dyslexia (I've started Barton already). She also dx'd mixed receptive-expressive language disorder; the specific difficulties were mostly to do with pragmatics, inferring, and predicting. She doesn't need low-level language work, but there were significant difficulties, for example, in reading nonverbal communication. (This is not surprising to me, because I prep her explicitly for most new social encounters and we are constantly talking about this. I have a couple of the Social Thinking books as well.) In general, inference, flexible thinking, and critical thinking were problem areas across the board. There is a likelihood of ADHD. She also needs help with narrative structure. (We haven't done any explicit instruction on this, and the SLP said it wasn't an area of HUGE concern but she would expect a bit more from a typical child even without explicit instruction. Her primary areas of concern at this time are reading and pragmatics.) In addition, her handwriting isn't great, which I knew. We may do an OT eval to see about motor coordination, etc. on this.

So. Some of this I have read a bit about, but don't know much. I feel like I know just enough about any of this to recognize I don't know anything and am probably using the wrong words. lol I plan to re-read the report in a few days after I've done my initial processing (panicking! haha). No doubt I am forgetting something right now, but I'm sure I have the main areas of concern. 

I have Barton and LiPS, already started.

Can I do pragmatics at home or do I need a SLP? Is this what the Social Thinking stuff is?

Narrative structure. Should I use something simple and see how she does (I was already planning this because I think she'd like it) since this was not a huge issue? Write Shop or something like that? ETA: Oh, wait, it's the Story Grammar stuff from MindWing that is for this, right? Would that be better? gah. my mind is hopping from one thing to another. the panic should abate soon. 🙂

Inference and critical thinking (is this in with pragmatics?)? We use some Critical Thinking Co. books already, but not consistently.

Do you have any initial thoughts about prioritizing, resources, or anything else I need to know? I can't tell you how much I appreciate you ladies taking the time to share your knowledge. I hope one day I will know enough/have enough experience to do the same.

Edited August 16, 2019 by Jentrovert
Remembered MindWing

[Terabith]

Honestly.....have you done a really, really good ASD evaluation?  Because that's a LOT of red flags for girl autism.  

[PeterPan]

I'm gonna jump to the end here and realize Terabith already said it. Time for ASD evals, because you've basically ticked all the boxes. So full psych eval with someone who specializes in ASD. This is the step not to cheap out on, and frankly I wouldn't do any pragmatics till you get it. You'd like an ADOS, multiple forms (ADI-R, Vineland, etc.). Make sure they're homeschool-friendly, because occasionally psychs will blame behaviors and pragmatics on homeschooling. 

[PeterPan]

So on the language stuff, I'm looking at your list. It's super wise that you got that SLP eval, because it turned up so much. You need the ASD eval because it gives you a global diagnosis, insurance coverage, and possibly county or state level funding. Given what you're describing, this is not a fast fix. You're looking at years of intervention. Like kick some butt, sure, but this is going to be a good number of years, a process. 

The point is, don't freak out that the list is long. You're going to triage, stagger things, maybe rotate. If you get that ASD diagnosis and get some serious insurance coverage, see if you can do 2 or more hours a week with that SLP. If she's testing all that stuff, hopefully she knows how to intervene. She can weave things together and hit multiple goals at once. Like she can weave social thinking into working on narrative. If you get the ASD kit from Story Grammar Marker, you'll see how that's done. You can get these trainings also and start weaving it into your day and carrying it over. But given that you have a really good SLP, I would try to get coverage for her to do as much as possible. There's enough there to do that it's good to spread the love around.

[PeterPan]

2 hours ago, Jentrovert said:

Can I do pragmatics at home or do I need a SLP? Is this what the Social Thinking stuff is?

So pragmatics is funny, because it's sort of the never-ending project. Remember, her need to think and apply is going to mature, involve, increase. So you're going to intervene, intervene again, intervene again. It's just a long-term project. If you get that ASD diagnosis (and you've ticked all the boxes), then you'll hopefully get funding through insurance for a behaviorist. I would let the behaviorist do it as the primary and I would let the SLP do just secondary application. SLPs sometimes get this dumped on them in schools, but a behaviorist is IDEAL. They have more time and are in a better position to work on generalization. If you do social skills work only with an SLP,  sometimes you don't get carryover. You have to be carrying it over to real life, which means you apply it during the day, your ABA workers do it, drip drip drip like that. But I like our behaviorist the BEST for this, because she is able to do it in a natural way, in our home, with play, with lots of application to real life.

But if you're asking about Social Thinking training, YES YES YES!!! I've been to a number of the workshops and you will be beyond glad you went. Just go to the Social Thinking site and see what workshops they have and where. Maybe some are coming your way. :)  Also Zones of Regulation, and anything Kelly Mahler is doing. Moreau (of Story Grammar Marker) doesn't travel, but you can learn that by reading their blog, watching their youtube, and buying the materials. That will be a snap for you. Kelly Mahler (interoception) has a new online course, so that's $99 and done. Zones training is good, but if you can't get it you can learn it through the book, sure. Social Thinking, at least to me, is better with the workshops, because they show videos and make the concepts come alive.

Okay, I say that, and they've been doing stellar stuff uploading informational brief videos on their site. You can get on their email list to get updated when new ones come out. But the trainings are worth it, yes.

2 hours ago, Jentrovert said:

Narrative structure. Should I use something simple and see how she does

 

2 hours ago, Jentrovert said:

the panic should abate soon. 🙂

Oh dear! Well let's not panic on this one. It sounds like she's saying what you're sorta thinking, that she's got *some* narrative language going, but it's a bit behind. So here's what I can tell you. Most writing curricula are NOT going to hit narrative language in a systematic way. Also, she's only 7, so where this is headed (and how far she could quickly become behind) is not yet apparent. The sorta behind could turn into very behind in a few years. 

So since my ds is in that boat (smile), I'll just say my hindsite would be to get the best tool. The easiest tool for you to use right now, the one that would do multiple good things at once for you, is the ASD set from SGM. https://mindwingconcepts.com/products/the-autism-collection?_pos=2&_sid=e1e0fcbd3&_ss=r  Here's the whole spiffy set, or buy just the 3 books. I suggest you go ahead and buy all three books because I think reading through them will pull a lot together for you. You'll see how social thinking and narrative language merge. You'll see where the grammar (that gets worked on for the MERLD) is showing up in her narratives. You'll see why random writing assignments won't allow you to tackle what's going on and help her go forward, why you need an intentional sequence. https://mindwingconcepts.com/products/autism-3-books-only?_pos=1&_sid=e1e0fcbd3&_ss=r  That's the 3 book set. Either way, roll with your gut.

2 hours ago, Jentrovert said:

Inference and critical thinking

There are like 6 kinds of inferencing and it's sort of a never-ending topic. Not as bad as pragmatics, but almost, lol. This is the kind of thing the SLP can nail for you if you get those hours funded. Jenn has had some great posts here listing resources. I'd like to say that I have exhaustively researched and treated this with my ds and have some kind of encyclopedic knowledge of it, and I haven't, lol. You're always going to do a little something. Look to the speech therapy community, especially with things from Linguisystems or Super Duper. But it's like drip drip, keep working on it, because it has a LOT of angles. It's the kind of thing they ALWAYS have on my ds', a running thing. It affects reading comprehension, pragmatics, everything. So it's not a sweat bullets, because you just keep working on it. More just drip drip.

So the language (merld) issues are sweat bullets and the pragmatics are right up there. See if the ASD evals will open up more funding. If you can get a behaviorist and some ABA going, then you'll be trying to do less yourself. This is not a situation where you want to be doing everything yourself. You want a team. That's why it feels overwhelming, because you shouldn't be doing it all yourself. So you need the further evals to get the funding to build that team. Then you'll be a team member, someone who helps apply instruction, but you won't be the only one doing it.

[kbutton]

2 hours ago, Jentrovert said:

Can I do pragmatics at home or do I need a SLP? Is this what the Social Thinking stuff is?

Narrative structure. Should I use something simple and see how she does (I was already planning this because I think she'd like it) since this was not a huge issue? Write Shop or something like that? ETA: Oh, wait, it's the Story Grammar stuff from MindWing that is for this, right? Would that be better? gah. my mind is hopping from one thing to another. the panic should abate soon. 🙂

Inference and critical thinking (is this in with pragmatics?)? We use some Critical Thinking Co. books already, but not consistently.

The other comment belongs first, but basically, I agree that the narrative language stuff and the Social Thinking can kind of go together. Honestly, inferencing, everything seems to get better with that kind of work. 

Like with everything though, you can add in other things if you are sort of stuck in one spot or to get things more solid--Inference Jones from The Critical Thinking Company is great, but it's probably not time yet. It's for older kids.

18 minutes ago, PeterPan said:

I'm gonna jump to the end here and realize Terabith already said it. Time for ASD evals, because you've basically ticked all the boxes. So full psych eval with someone who specializes in ASD. This is the step not to cheap out on, and frankly I wouldn't do any pragmatics till you get it. You'd like an ADOS, multiple forms (ADI-R, Vineland, etc.). Make sure they're homeschool-friendly, because occasionally psychs will blame behaviors and pragmatics on homeschooling. 

I agree that doing pragmatics work, especially at her age, could make getting additional diagnoses harder, and it sounds like you do need more evals. It sounds like a GREAT language evaluation though! 

[Jentrovert]

Thank you both. Sigh and lol. I've been saying to my husband for weeks (months) that, crazy as it may seem, I really think she may have autism. She is very extroverted and social. But besides the difficulty with nonverbal communication,  she appears to be very sympathetic and empathetic but I have always felt it was "fake", like she's imitating it. Very rigid thinking and strict interpretation of words. Plus, I have the exact same feelings of frustration with her as I do with my husband is undx'd (what used to be) Asperger's. We are quite sure about him. The funny thing is, our children aren't biologically related. 

Unfortunately, this SLP is 3 hours away. So I can't use her. There is an SLP locally but I don't know much about her. I will need to research her and anyone else relatively nearby.

So, for right now you're saying to only work on the reading, right? Leave everything else (as far as working with her, I mean. I will get stuff to be reading for me.) so that I get a good eval on the ASD?

Let me clarify on the eval, do I need a neuropsych or will a psychologist do? And, do I specifically need one specializing in autism in GIRLS? 

I can see a couple other comments came in, but need to refresh to read them. I'm going to post this so I don't lose it . . 

 

[PeterPan]

2 hours ago, Jentrovert said:

Do you have any initial thoughts about prioritizing

One, take care of yourself.

Two, don't drink.

Like drink if you want to, but I'm just saying the advice I read that sorta saves my butt every so often. If things are complicated and there's a pile (possible autism, big stuff on the table), don't drink to solve it. The problems aren't going away, and you have to make peace with it. You accept it, accept that it's going to be a long-term process, that you can't make it go away, that intervention will continue as she will continue to grow, and that she will have a happy, peaceful life in the end, whatever that looks like.

So go to the gym, take care of yourself, grieve for all this mess, and then get back to taking care of yourself.

If you do that, everything else will fall into place. The SLP sounds like she can handle a bunch, if you can get funding. Then see about the psych evals to get funding for a behaviorist. I mean maybe you don't need a behaviorist, but that should be on the table as a question at least. And DON'T ASK AN SLP IF YOU SHOULD DO ABA. Oh my lands. ABA is an umbrella term. There's this sort of idiotic turf war between SLPs and BCBAs. (see me shaking my head, ugh) It's beyond stupid. 

I read BOTH camps. Neither of them is all the way there. I use a behaviorist who is very eclectic and not NOT a strict ABA kinda person. Very naturalistic, lots of play therapy, etc. ABA can be an umbrella term like that. 

The SLPs get pissy because BCBAs do language work. But the BCBAs and their underlings doing the in-home hours have the TIME with the dc that it takes to nail and get generalized and applied language and get it USED. So there should be no turf war. And SLPs are not trained on the VMPAC or the Verbal Behavior Approach (VBA). It's utterly, utterly stupid. Sometimes they even talk right past each other, using different terms for the same things!!! It's a total farmers vs. ranchers kinda moment. Whatever.

So don't believe anyone I guess but certainly don't get all your advice from the SLP. I like my SLPs and I've used a scad. I've got a new one we're starting with that I adore already, serious thinker, totally enthused. (haha, you know how that is) 

For me, and this is just me, I try, for the most part, to run everything by the behaviorist. She is my big picture person. I tell her everything and she helps me connect dots and see where to prioritize. I know what to prioritize by talking with the behaviorist. She is my with my for 15 years, long-term person. 

The SLPs are workers. The OTs are workers. The behaviorist coordinates and makes all these pieces come together into a plan. You can do that, but if you end up with a diagnosis having the right behaviorist (someone you click with) can be a blessing. Otherwise, you do it. 

Sometimes SLPs are really prescient or observant. But they are not behaviorists, kwim? 

Did I ruin your evening? No, I'm just saying life gets harder. It's harder now at 10 than it was at 7. And Kbutton knew my ds at 7, so I guess she can say that's scary, lol. It is. Take care of yourself, build a good team, don't drink. You'll get through it. Or we'll get through it. I hope. Sometimes I have to preach to myself a little...

[kbutton]

7 minutes ago, Jentrovert said:

Let me clarify on the eval, do I need a neuropsych or will a psychologist do? And, do I specifically need one specializing in autism in GIRLS? 

Once you get settled and have processed things, ask for referrals. The SLP that did the testing might have one. Call psychs and ask questions. Sometimes NP is better, sometimes a psychologist is better--it's important that you feel good when you talk to them. Getting on waiting lists while you do your research is good--you can always cancel if you don't feel good about a particular professional. 

[Terabith]

I don't think you need a neuropsych.  Honestly, our neuropsych didn't really DO autism.  He was great at LDs, but he didn't run any autism stuff, just dx a "social learning disability."  Spoiler alert:  it was autism.  

I'd like to say you don't really need a specialist in girls and autism, but we saw a TON of experts, from literally the time she was two.  And they ran the ADOS - twice, and she aced it both times with literally a score of zero.  But you look at the DSM criteria, and she ticks every single box.  Anyone who knows ASD and knows her thinks she's autistic.  It just really looks really different, and most autism experts really don't get it.  So, I think you probably DO need an expert on girls and autism, but whether you can find one...  I've never found one.  But honestly, I think my kid may be less affected.  She doesn't have any language issues, for instance, and a lot of other stuff is really subtle.  

[Jentrovert]

4 minutes ago, PeterPan said:

One, take care of yourself.

Two, don't drink.

Like drink if you want to, but I'm just saying the advice I read that sorta saves my butt every so often. If things are complicated and there's a pile (possible autism, big stuff on the table), don't drink to solve it. The problems aren't going away, and you have to make peace with it. You accept it, accept that it's going to be a long-term process, that you can't make it go away, that intervention will continue as she will continue to grow, and that she will have a happy, peaceful life in the end, whatever that looks like.

So go to the gym, take care of yourself, grieve for all this mess, and then get back to taking care of yourself.

If you do that, everything else will fall into place. The SLP sounds like she can handle a bunch, if you can get funding. Then see about the psych evals to get funding for a behaviorist. I mean maybe you don't need a behaviorist, but that should be on the table as a question at least. And DON'T ASK AN SLP IF YOU SHOULD DO ABA. Oh my lands. ABA is an umbrella term. There's this sort of idiotic turf war between SLPs and BCBAs. (see me shaking my head, ugh) It's beyond stupid. 

I read BOTH camps. Neither of them is all the way there. I use a behaviorist who is very eclectic and not NOT a strict ABA kinda person. Very naturalistic, lots of play therapy, etc. ABA can be an umbrella term like that. 

The SLPs get pissy because BCBAs do language work. But the BCBAs and their underlings doing the in-home hours have the TIME with the dc that it takes to nail and get generalized and applied language and get it USED. So there should be no turf war. And SLPs are not trained on the VMPAC or the Verbal Behavior Approach (VBA). It's utterly, utterly stupid. Sometimes they even talk right past each other, using different terms for the same things!!! It's a total farmers vs. ranchers kinda moment. Whatever.

So don't believe anyone I guess but certainly don't get all your advice from the SLP. I like my SLPs and I've used a scad. I've got a new one we're starting with that I adore already, serious thinker, totally enthused. (haha, you know how that is) 

For me, and this is just me, I try, for the most part, to run everything by the behaviorist. She is my big picture person. I tell her everything and she helps me connect dots and see where to prioritize. I know what to prioritize by talking with the behaviorist. She is my with my for 15 years, long-term person. 

The SLPs are workers. The OTs are workers. The behaviorist coordinates and makes all these pieces come together into a plan. You can do that, but if you end up with a diagnosis having the right behaviorist (someone you click with) can be a blessing. Otherwise, you do it. 

Sometimes SLPs are really prescient or observant. But they are not behaviorists, kwim? 

Did I ruin your evening? No, I'm just saying life gets harder. It's harder now at 10 than it was at 7. And Kbutton knew my ds at 7, so I guess she can say that's scary, lol. It is. Take care of yourself, build a good team, don't drink. You'll get through it. Or we'll get through it. I hope. Sometimes I have to preach to myself a little...

This is really excellent advice. I can't drink, because I have horrible reflux that it aggravates (actually, I didn't drink before the reflux, just never liked the taste) BUT I am not good at. all. about taking care of myself. I eat when stressed and allow myself to be "too busy" to exercise. 

Lol on the ABA. We very briefly talked autism, and the SLP clearly said, "Do not do ABA." haha 

These boards are the only place I've heard of behaviorists. I will need to research availability on that as well.

Yes, we will get through it. Surely. 🤔😁🤗

 

[PeterPan]

4 minutes ago, Jentrovert said:

She is very extroverted and social.

Oh yeah, there are no socially motivated ASD people on the planet. Like nobody here, on this highly active social forum that talks constantly, is on the spectrum. And yeah nobody with autism shows up at conventions with thousands of other people. Nobody on the spectrum as friends either. They sit in closets.

I mean seriously, what a common misconception. We get this on the boards, with people being dismissed about their concerns about their kids because the kids seem too social. People can be extroverts and on the spectrum. The real question is HOW they extrovert and whether they demonstrate the deficits as they extrovert. 

I guess be thankful she's extroverted? I mean, being socially motivated is a great thing! My ds is socially motivated. It makes ABA so easy, because we never have to do all that token board crap. He's not motivated by that. He's SOCIALLY MOTIVATED. So for him, you just lure him with interaction and he's RIGHT THERE, zoom. He LOVES when his ABA workers come over. For him, social interaction is a REWARD. 

Now I'm not an introvert, but my impression is that for introverts that kind of social is fatiguing, something they want breaks from, etc., right? Maybe you're an introvert and so it's hard to imagine someone else being energized by interaction and people?

9 minutes ago, Jentrovert said:

But besides the difficulty with nonverbal communication,  she appears to be very sympathetic and empathetic but I have always felt it was "fake", like she's imitating it.

Aww, this is sad. Because she's trying, but other people can tell it's not flying. That's a long-term thing. 

You might ponder whether she self-regulates. That's what I personally would be much more concerned with than whether she comes across nice or whatever right now. We talk about co-regulating. Sometimes kids, adults, are seeming sympathetic but their systems are highly sensitive. So she might mirror the emotions of people around her. 

11 minutes ago, Jentrovert said:

my husband is undx'd (what used to be) Asperger's.

Did I chop this incorrectly? Yes, autism in a fair percentage of cases is genetic. You might like to look up the SPARK study after she's diagnosed. They're doing good work.

11 minutes ago, Jentrovert said:

Very rigid thinking and strict interpretation of words.

Yes, this is why she's ticking boxes on diagnosis. It's fine. Like you'll work on it, but you've got a lot of other more foundational things to work on. I think let the behaviorist help you prioritze. That's the language manifestation, but the Social Thinking materials are going to develop the mental thought process that helps you get there. You're going to work on multiple meanings, but it won't be JUST multiple meanings.

When she starts reading, make DOGGONE SURE you watch her comprehension. My ds wasn't comprehending when he read. Well he sorta did, because he could pass the DAR at about the 5th/6th grade level at the end of 1st. But he was scripting and not using original language. There's this idea of word callers, people who read and don't understand. And part of what seems to be involved is multi-processing. Cartwright has a book on it. So we need to process a word to decode it AND a word as meaning. So someone can process rigidly social, language, text, anything. It's just something to watch.

14 minutes ago, Jentrovert said:

Let me clarify on the eval, do I need a neuropsych or will a psychologist do? And, do I specifically need one specializing in autism in GIRLS? 

Ooo, nicely applied! So here's how it rolls. There are hospitals in our state who only diagnosis ASD if the dc is non-verbal. That's what I'm being told. Things are kind of funky political in our state. That's not DSM, but it's what they're doing. So yes, find word on the street, find out where people are going, ABSOLUTELY look for someone with experience with girls. Some girls can pass an ADOS and still be on the spectrum. It's just how it rolls. You'll need someone who sees a lot of ASD who does not have an anti-homeschooling bias. You expect them to spend 4-6 hours just on the question of the autism. Ask them upfront what tools they will use and then come say the list here or google the terms.

17 minutes ago, Jentrovert said:

do I need a neuropsych or will a psychologist do

I got burnt by a neuropsych that was a donkey's butt. Experience with ASD is what matters. Shop around. Sometimes neuropsychs are doing so many things that they kinda fast food the ASD eval, with just a GARS. That's how we got burnt. Not good enough.

[Jentrovert]

6 minutes ago, kbutton said:

Once you get settled and have processed things, ask for referrals. The SLP that did the testing might have one. Call psychs and ask questions. Sometimes NP is better, sometimes a psychologist is better--it's important that you feel good when you talk to them. Getting on waiting lists while you do your research is good--you can always cancel if you don't feel good about a particular professional. 

I did ask if she had a np referral, and she didn't. That's a great idea to get on lists and research at the same time.

[PeterPan]

2 minutes ago, Jentrovert said:

Lol on the ABA. We very briefly talked autism, and the SLP clearly said, "Do not do ABA." haha

See, lol. 

So I'm with her. Don't do DTT. Do umbrella term ABA===Hanen, Play Project, Social Thinking, lots and lots of stuff. But no, you should not be doing aversion therapy or probably even DTT.

But here's the joke of it. If you know how to do DTT, then you know how to recognize how the dc is learning and how to work in small sets the dc can actually handle. So we do not technically do DTT, but when you look at how my materials are set up to work with ds, with the brief sessions, small work sets, etc., our behaviorist is like yes, this is functioning like DTT for him. But for us, it's just GOOD TEACHING. But good teaching for him means reaching him where he is with the amount he can handle.

So like I was doing some intervention with my ds with some particular materials, and I was telling the behaviorist I felt bad, like maybe I wasn't doing it right, because I couldn't do a PAGE with him. Like a single page out of a speech therapy book. I'm like I have to cut this page with 20 in half, that's all he can tolerate, he needs breaks. She's like yes, that's what we do in DTT, we control set lengths and take breaks. There's more to DTT.

But you see why something could have a bad reputation? You're smarter than that. You don't have to throw out the good with the bad or have these all/nothing ideas. Build a team, do what works. Take good everywhere you find it, because I guarantee you NO ONE PERSON IS THE ULTIMATE in this situation. 

There is only ONE PERSON on the team who has the final say, who stands before God, who birthed that child, who will care till the day that child dies. You. That's it. So you decide, you build the team, you prioritize, and you bring in everyone who can help.

[PeterPan]

4 minutes ago, Jentrovert said:

I did ask if she had a np referral, and she didn't. That's a great idea to get on lists and research at the same time.

That's pretty informative. Usually these people know the psychs who are feeding people to them.

No matter, she gave you a good eval. Some SLPs are really anti-diagnosis. I kid you not. Our first SLP for ds HATED diagnoses, BEGGED me not to have ds diagnosed by a psych. Yes, you read that correctly. BEGGED. She said boys were over-diagnosed, that he couldn't be, on and on.

And now he has an ASD2 label. That he got at, um, well way late. Was easily diagnosable at 2. And she said don't bother.

So don't get me started on the omniscience of the SLPs, lol.

[Terabith]

Definitely on the socially motivated autism.  Not my kid, lol, but I mean...my husband and older daughter are really big into sci fi cons, and you go to those....I'd bet the ASD rate is probably 33%.  It's insane.  Lots of social autistics.  

I'm really torn on ABA, because I'm not autistic.  I mean, I'm weird as hell, and I probably kiss the spectrum, but I'm not really on it.  And the adult autistics that I talk to all think it's horrible, awful stuff.  But what they describe doesn't sound like what PeterPan or CrimsonWife describe.  So it makes me nervous, but I think maybe what is called ABA has been stretched so that it's not the same at all.  Makes language sort of meaningless.  Wouldn't work for my kid, though, because she's not socially motivated and she was offended as a tiny child by any form of token economy.  Like, we tried a sticker/ candy chart when she was three to potty train and she called it "emotional manipulation.....it's my body and you can't make me and it hurts my feelings that you would try!"  Like I said, no language issues.  Plus, she was 11 before we really got a definitive diagnosis, and our state had a "no funding after age five" thing, so....yeah.  

What does your kid love?  I think therapy and intervention is crucial, but I really think it's even more important to find something that they're passionate about and really work with that.  Feed that passion, those gifts.  My kid loves Dungeons and Dragons.  It started as a "special interest," really an obsession, with unicorns, but she fell in love with role playing around age nine.  And she's gotten SO MUCH out of tons of it.  I really think those special interests, those passions are the key to pretty much everything.  

[Jentrovert]

4 minutes ago, PeterPan said:

Oh yeah, there are no socially motivated ASD people on the planet. Like nobody here, on this highly active social forum that talks constantly, is on the spectrum. And yeah nobody with autism shows up at conventions with thousands of other people. Nobody on the spectrum as friends either. They sit in closets.

I mean seriously, what a common misconception. We get this on the boards, with people being dismissed about their concerns about their kids because the kids seem too social. People can be extroverts and on the spectrum. The real question is HOW they extrovert and whether they demonstrate the deficits as they extrovert. 

Yes! I happened to be in part of a conversation today, coincidentally, in which someone said that the local SLP had told her that her son could not be ASD because he plays with other kids socially. That makes me leery of her.

 

 

4 minutes ago, PeterPan said:

I guess be thankful she's extroverted? I mean, being socially motivated is a great thing! My ds is socially motivated. It makes ABA so easy, because we never have to do all that token board crap. He's not motivated by that. He's SOCIALLY MOTIVATED. So for him, you just lure him with interaction and he's RIGHT THERE, zoom. He LOVES when his ABA workers come over. For him, social interaction is a REWARD. 

Now I'm not an introvert, but my impression is that for introverts that kind of social is fatiguing, something they want breaks from, etc., right? Maybe you're an introvert and so it's hard to imagine someone else being energized by interaction and people?

Yes, I am an introvert. My husband is extroverted though, so I get it.

Aww, this is sad. Because she's trying, but other people can tell it's not flying. That's a long-term thing. 

You might ponder whether she self-regulates. That's what I personally would be much more concerned with than whether she comes across nice or whatever right now. We talk about co-regulating. Sometimes kids, adults, are seeming sympathetic but their systems are highly sensitive. So she might mirror the emotions of people around her. 

She has a hard time self-regulating.

Did I chop this incorrectly? Yes, autism in a fair percentage of cases is genetic. You might like to look up the SPARK study after she's diagnosed. They're doing good work.

Well, our kids are adopted, and not genetically related. That's what's funny about it.

Yes, this is why she's ticking boxes on diagnosis. It's fine. Like you'll work on it, but you've got a lot of other more foundational things to work on. I think let the behaviorist help you prioritze. That's the language manifestation, but the Social Thinking materials are going to develop the mental thought process that helps you get there. You're going to work on multiple meanings, but it won't be JUST multiple meanings.

When she starts reading, make DOGGONE SURE you watch her comprehension. My ds wasn't comprehending when he read. Well he sorta did, because he could pass the DAR at about the 5th/6th grade level at the end of 1st. But he was scripting and not using original language. There's this idea of word callers, people who read and don't understand. And part of what seems to be involved is multi-processing. Cartwright has a book on it. So we need to process a word to decode it AND a word as meaning. So someone can process rigidly social, language, text, anything. It's just something to watch.

Thank you, I will keep an eye on this.

Ooo, nicely applied! So here's how it rolls. There are hospitals in our state who only diagnosis ASD if the dc is non-verbal. That's what I'm being told. Things are kind of funky political in our state. That's not DSM, but it's what they're doing. So yes, find word on the street, find out where people are going, ABSOLUTELY look for someone with experience with girls. Some girls can pass an ADOS and still be on the spectrum. It's just how it rolls. You'll need someone who sees a lot of ASD who does not have an anti-homeschooling bias. You expect them to spend 4-6 hours just on the question of the autism. Ask them upfront what tools they will use and then come say the list here or google the terms.

I got burnt by a neuropsych that was a donkey's butt. Experience with ASD is what matters. Shop around. Sometimes neuropsychs are doing so many things that they kinda fast food the ASD eval, with just a GARS. That's how we got burnt. Not good enough.

 

[PeterPan]

9 minutes ago, Jentrovert said:

These boards are the only place I've heard of behaviorists.

They hide in bushes, in natural environments with wildflowers.

No seriously, I was up on lake erie taking pictures of wild flowers today and it was beautiful. Ate berries, biked, collected rocks. Now I'm back to that other life, getting hit and trying to calm melt downs. Ds went to sleep under his bed and I don't know if he came out. It's a little tight. 

Anyways, their cert label is BCBA. Honestly, you'll have a doozey of a time finding them in some places. Big city more likely. They bill rather expensive. So try a big city. Like here, in the rather small town where I live, I'm not sure there is a BCBA. Like not a single one. Our behaviorist is not BCBA. That credentialling came later, so not all behaviorists are BCBA. But you don't want a hard core BCBA anyway. 

Keep your ear to the ground, keep talking and asking around. You might hate the BCBAs you call. I found our behaviorist by serious word of mouth, like this total God placement, oh my. Sometimes this stuff scares me, lol. 

So if you found someone in the big city and liked them and were clicking, you'd consult once a month or once a week by skype and she could supervise in-home workers or guide you. They're qualified to do that. Having someone you talk with, who is big picture, can be immensely valuable. Mine is just a saint. 

Ok, so have we mentioned RDI? You'll get these weird situations where the RDI people are like oh, don't do ABA, ABA is horrible! Fine, I agree that prescribing behavior gets robotic results and that we should not use aversion therapy. I agree that you can push compliance so hard with my ds that you shut down his personality and soul and he goes flat. Like seriously, it can happen. I agree with the guy on Austim Discussion Page on FB that it should be your ds and you in the front seat and everyone else in the backseat, where you pilot and your dc is the copilot. THAT is authentic and results in authentic progress and interaction. It's probably possible in your case. Sometimes it's a little less possible, but in your case it's possible.

But yeah, RDI is pretty stellar in its place. They have a directory of practitioners and it would be another way to network. You'd like to do their eval and work with them, even just a little (once a month, buy the book, whatever). DON'T DO THAT TILL YOU'VE DONE YOUR EVALS.  

[PeterPan]

3 minutes ago, Terabith said:

And the adult autistics that I talk to all think it's horrible, awful stuff.  But what they describe doesn't sound like what PeterPan or CrimsonWife describe. 

Caveat. Adult autistics who were on the receiving end of this very early, very primitive ABA don't like it. Adult autistics who WEREN'T on the receiving end OR who recognize that it's a much bigger umbrella now with more widely developed range of approaches, aren't saying that.

The whole thought process underlying early ABA was pretty screwy. Lecka also wisely has pointed out in the past that the people decrying how they were treated never seem to caveat it with "but I get why my parents were frustrated and felt the need to do that." Like seriously, there's nothing like being almost impossible to live with and then complaining when someone tried to do SOMETHING to help you. Seriously.

[PeterPan]

6 minutes ago, Terabith said:

Like, we tried a sticker/ candy chart when she was three to potty train and she called it "emotional manipulation.....it's my body and you can't make me and it hurts my feelings that you would try!" 

My dd has that ability to see through people. It's kind of a freakish superpower.

[PeterPan]

7 minutes ago, Terabith said:

she fell in love with role playing around age nine. 

Total aside, have you seen the social thinking software that uses dragons? I got it a couple years ago and I think ds is just old enough to try. You raise the dragons and teach them social skills or something like that. Apparently it's a little too complicated for average clinic settings, so people liked it, kids liked it, but it was hard to make happen. It's on my to do list.

[PeterPan]

8 minutes ago, Jentrovert said:

the local SLP had told her that her son could not be ASD because he plays with other kids socially. That makes me leery of her.

So if you ask other SLPs, ask ASHA, they are being told that they can diagnose SLDs (reading, math), ASD, anything they feel is within their realm of expertise. If you look at what qualifies you anywhere ELSE to answer the question of ASD, it would be something like a phd in psychology. Our behaviorist, with her LSW masters (and licensed) diagnoses *under* a psych.

So to me, and this is just me, I like to take more strongly the comments in areas where they're experts and less strongly, more like opinions, things where they're not experts. Lots of people have opinions.

[Jentrovert]

6 minutes ago, Terabith said:

Definitely on the socially motivated autism.  Not my kid, lol, but I mean...my husband and older daughter are really big into sci fi cons, and you go to those....I'd bet the ASD rate is probably 33%.  It's insane.  Lots of social autistics.  

It's board games for my husband. Lol

I'm really torn on ABA, because I'm not autistic.  I mean, I'm weird as hell, and I probably kiss the spectrum, but I'm not really on it.  And the adult autistics that I talk to all think it's horrible, awful stuff.  But what they describe doesn't sound like what PeterPan or CrimsonWife describe.  So it makes me nervous, but I think maybe what is called ABA has been stretched so that it's not the same at all.  Makes language sort of meaningless.  Wouldn't work for my kid, though, because she's not socially motivated and she was offended as a tiny child by any form of token economy.  Like, we tried a sticker/ candy chart when she was three to potty train and she called it "emotional manipulation.....it's my body and you can't make me and it hurts my feelings that you would try!"  Like I said, no language issues.  Plus, she was 11 before we really got a definitive diagnosis, and our state had a "no funding after age five" thing, so....yeah.  

Haha My dd says, whenever she doesn't want to do something, "I thought my body belongs to me? How can you make my body do this, then?" And she is totally serious, it makes no sense to her. 

What does your kid love?  I think therapy and intervention is crucial, but I really think it's even more important to find something that they're passionate about and really work with that.  Feed that passion, those gifts.  My kid loves Dungeons and Dragons.  It started as a "special interest," really an obsession, with unicorns, but she fell in love with role playing around age nine.  And she's gotten SO MUCH out of tons of it.  I really think those special interests, those passions are the key to pretty much everything.  

Right now it would be animals. She and my ds just got fish. I insisted on a trial to see if they take care of fish before we move on. My parents have cats, dogs, chicken, and cows. We've had goats and dogs. Next year chickens and hopefully goats again.

 

[Terabith]

1 minute ago, PeterPan said:

Caveat. Adult autistics who were on the receiving end of this very early, very primitive ABA don't like it. Adult autistics who WEREN'T on the receiving end OR who recognize that it's a much bigger umbrella now with more widely developed range of approaches, aren't saying that.

The whole thought process underlying early ABA was pretty screwy. Lecka also wisely has pointed out in the past that the people decrying how they were treated never seem to caveat it with "but I get why my parents were frustrated and felt the need to do that." Like seriously, there's nothing like being almost impossible to live with and then complaining when someone tried to do SOMETHING to help you. Seriously.

That's a fair point.  Probably a difficult one, due to the nature of difficulties inherent with autism plus that whole parent-child thing, but yeah.  I get how parents would be super desperate and try anything, totally.  They were listening to the experts.  I've been there.  Usually regretted it, but I've totally done it, and I've never had anything like the kinds of behavior problems a lot of people with autism have.  

But....I was hired to do ABA back when I was in grad school for a little four year old boy with autism.  I lasted a week.  I couldn't do it.  There were no aversives, but it was brutal, and I kept getting chewed out for letting him take too much time away from the table to use the potty, and I dunno.  It was giving him rote skills, but it was all superficial, all developmentally inappropriate.  No four year old needs to be sitting at a table being bribed to literally clap when told to clap for forty hours a week.  And the adult autistics who got early ABA are pretty seriously traumatized.  

[Terabith]

4 minutes ago, PeterPan said:

Total aside, have you seen the social thinking software that uses dragons? I got it a couple years ago and I think ds is just old enough to try. You raise the dragons and teach them social skills or something like that. Apparently it's a little too complicated for average clinic settings, so people liked it, kids liked it, but it was hard to make happen. It's on my to do list.

No!  What is it called?  That sounds awesome!!!

[Jentrovert]

2 minutes ago, PeterPan said:

So if you ask other SLPs, ask ASHA, they are being told that they can diagnose SLDs (reading, math), ASD, anything they feel is within their realm of expertise. If you look at what qualifies you anywhere ELSE to answer the question of ASD, it would be something like a phd in psychology. Our behaviorist, with her LSW masters (and licensed) diagnoses *under* a psych.

So to me, and this is just me, I like to take more strongly the comments in areas where they're experts and less strongly, more like opinions, things where they're not experts. Lots of people have opinions.

This makes sense.

When I talked with the SLP who did the eval, she mentioned that many SLPs are now diagnosing ASD, but said she hasn't had any training in this area and so didn't feel comfortable doing it.

[PeterPan]

11 minutes ago, Jentrovert said:

Well, our kids are adopted, and not genetically related. That's what's funny about it.

Oh lightbulb moment!! Well that's not all bad. I mean, how stellar to get to live with someone who GETS it. 

There's a lot of neurodiversity talk. Within me, just my opinion, my sifting of it, I think there are genetic presentations that are de novo that just SUCK, that are basically just stinking bad. There's nothing pretty about them, and if you talk with parents in that boat, they really aren't appreciating the neurodiversity line. 

But if you go over to the fair chunk of ASD that is harder to sift out, where like even SPARK could only trace really directly with genetics about 10% because the rest is SO multi-faceted, reality is that makes sense to view that somewhat as neurodiversity. 

If your dc's situation is where it really is disastrous, frame it as works for you. But for some people, it's more toward the neurodiversity side. For your dh it sounds like it is, and maybe for this dc it will be.

I have no clue why we're on this, lol. I just think it's something to think about. You can grieve and should grieve. Stop at one pan of brownies and one carton of ice cream. But after you've grieved for this round, you'll get to work. It's going to be fine.

[PeterPan]

14 minutes ago, Jentrovert said:

She has a hard time self-regulating.

That's a very big topic. https://www.kelly-mahler.com/what-is-interoception/  This may connect a lot of dots and her $99 course is worth your time. I've done trainings on Zones of Regulation, blah blah, but this is super foundational. A lot is going to click and connect with this.

[PeterPan]

6 minutes ago, Jentrovert said:

Haha My dd says, whenever she doesn't want to do something, "I thought my body belongs to me? How can you make my body do this, then?" And she is totally serious, it makes no sense to her. 

Fwiw my ds doesn't get social constructs either. If I can tell him to do something, then he should be able to tell me what to do. So a lot in his world seems unfair, sigh.

[PeterPan]

6 minutes ago, Terabith said:

No!  What is it called?  That sounds awesome!!!

I need to tell my lazy but to go get it. The case is brown, which doesn't help you, lol. I pulled everything off the book case it was on and the stuff is in these piles on the floor in a different room. Sigh. But I will go find it today or tomorrow. Just hawk me.

[Terabith]

About the "I thought my body belongs to me?"  I always told my kids that I couldn't make their body do anything.  That all I could do was convince them.  And I fully believe that that's true, because unless you're hand over handing, I really COULDN'T compel anything.  Convincing can take many forms.  

[PeterPan]

8 minutes ago, Terabith said:

No!  What is it called?  That sounds awesome!!!

I didn't go down, but it showed up on googlefu. Ryuu The Game for Children with Autism | Social ... - Social Skills Gamessocial-skills-games.com/autism-games/ryuu-game/

[PeterPan]

1 minute ago, Terabith said:

About the "I thought my body belongs to me?"  I always told my kids that I couldn't make their body do anything.  That all I could do was convince them.  And I fully believe that that's true, because unless you're hand over handing, I really COULDN'T compel anything.  Convincing can take many forms.  

Ok, so total aside, but I thought I was being brilliant saying that to my ds. He would say someone MADE him angry, made him hit, blah blah, and I'm like no, nobody makes you do anything.

So then I want him to do something and he's like see, nobody can make me do anything.

Gotta love hyper-literalism. And the age.

[Terabith]

1 minute ago, PeterPan said:

I didn't go down, but it showed up on googlefu. Ryuu The Game for Children with Autism | Social ... - Social Skills Gamessocial-skills-games.com/autism-games/ryuu-game/

That looks great!  Now the only trick is to convince my husband we need a computer that has a CD-ROM drive....  He's a computer programmer!  You'd think we'd have tons of old computers lying around!  

[Jentrovert]

3 minutes ago, PeterPan said:

Oh lightbulb moment!! Well that's not all bad. I mean, how stellar to get to live with someone who GETS it. 

There's a lot of neurodiversity talk. Within me, just my opinion, my sifting of it, I think there are genetic presentations that are de novo that just SUCK, that are basically just stinking bad. There's nothing pretty about them, and if you talk with parents in that boat, they really aren't appreciating the neurodiversity line. 

But if you go over to the fair chunk of ASD that is harder to sift out, where like even SPARK could only trace really directly with genetics about 10% because the rest is SO multi-faceted, reality is that makes sense to view that somewhat as neurodiversity. 

If your dc's situation is where it really is disastrous, frame it as works for you. But for some people, it's more toward the neurodiversity side. For your dh it sounds like it is, and maybe for this dc it will be.

I have no clue why we're on this, lol. I just think it's something to think about. You can grieve and should grieve. Stop at one pan of brownies and one carton of ice cream. But after you've grieved for this round, you'll get to work. It's going to be fine.

Absolutely, I'm glad we have the experience with my husband, even though it is really hard on me, the NT in the relationship. It really gives us the motivation to pursue a dx and work for the long haul. He would have so much of an easier time had he had that as a child. It's so hard to do this stuff as an adult and so hard to learn to advocate for yourself. 

I think you're right on the neurodiversity/stinking bad. Even "only" neurodiversity, though, is so very difficult in close relationships. 

[PeterPan]

12 minutes ago, Terabith said:

But....I was hired to do ABA back when I was in grad school for a little four year old boy with autism.  I lasted a week.  I couldn't do it.  There were no aversives, but it was brutal, and I kept getting chewed out for letting him take too much time away from the table to use the potty, and I dunno.  It was giving him rote skills, but it was all superficial, all developmentally inappropriate.  No four year old needs to be sitting at a table being bribed to literally clap when told to clap for forty hours a week.  And the adult autistics who got early ABA are pretty seriously traumatized.  

So I'm in autism schools around here pretty regularly, quite a bit, and ABA doesn't look like that here. The autism school will say on the door they do naturalistic ABA or whatever theory of ABA they espouse. 

I'm glad you were able to move on. I'm sure it's still that rigid in some places, but there's a LOT now that's not. 

However, saying all that, our behaviorist warned me that if I wanted to get into the field (like get a certificate, do some hours under a BCBA), that there was probably NO ONE in the big city I'd be happy working under. 

[Terabith]

1 minute ago, PeterPan said:

Ok, so total aside, but I thought I was being brilliant saying that to my ds. He would say someone MADE him angry, made him hit, blah blah, and I'm like no, nobody makes you do anything.

So then I want him to do something and he's like see, nobody can make me do anything.

Gotta love hyper-literalism. And the age.

Plus side....they're almost completely immune to peer pressure.  I worry about my older kid doing things to fit in, but I have no worries about Cat.  Now, given the wrong circumstances, she might take a morally flexible approach to the world and start a criminal enterprise.  But it won't be because of peer pressure.  

[PeterPan]

2 minutes ago, Jentrovert said:

Even "only" neurodiversity, though, is so very difficult in close relationships. 

Yup. Sigh.

[Terabith]

Just now, PeterPan said:

So I'm in autism schools around here pretty regularly, quite a bit, and ABA doesn't look like that here. The autism school will say on the door they do naturalistic ABA or whatever theory of ABA they espouse. 

I'm glad you were able to move on. I'm sure it's still that rigid in some places, but there's a LOT now that's not. 

However, saying all that, our behaviorist warned me that if I wanted to get into the field (like get a certificate, do some hours under a BCBA), that there was probably NO ONE in the big city I'd be happy working under. 

Cat does tutoring at the local autism school.  It's fantastic.  The teacher is one of the few professionals who really GET her.  But when we toured the school, that really is what their ABA looked like, especially with the lower functioning kids.  And maybe it's necessary?  I honestly have no room to talk about anything, because I don't have a ton of lived experience with "lower functioning" (and I know that that is a taboo term, but it's the most descriptive thing I can use at the moment) autism.  To some extent, to get someone to the point where other people can live with them....I know it sucks, but maybe ABA in its more original form is a necessary evil?  I really don't know, and I have no moral right to judge.  

[Jentrovert]

I'd better get to bed, so if anything is added, I'll be checking in tomorrow. 🙂

I know I said it already, but I really cannot thank you enough. I feel MUCH more calm. 

[PeterPan]

1 minute ago, Terabith said:

"lower functioning"

So yes, I think you're noticing the pattern there, and like you because it's not my situation I have zero way to comment. But I can say that I think when people do the flipside (oh ABA is for low functioning/ID kids, so don't do ABA on your gifted/high functioning kid) that they're possibly turning people away from doors that could open.

The behaviorist and I talk a LOT about how to have honest interaction, how to help him think and self-advocate, how to help him not be a robot. There are people who can shut down a dc's self-advocacy and they DON'T have to be doing ABA. 

[Kanin]

12 hours ago, PeterPan said:

I mean seriously, what a common misconception. We get this on the boards, with people being dismissed about their concerns about their kids because the kids seem too social. People can be extroverts and on the spectrum. The real question is HOW they extrovert and whether they demonstrate the deficits as they extrovert. 

I had a student last year with autism. She was very extroverted, loved talking to people, and was also extremely sweet, loving, and empathetic. She also had extremely rigid thinking. We had a tiff because I called the putty "silly putty" (what it was called when I was a kid) and she was like, "IT'S JUST CALLED PUTTY!!!!!" We had to talk through things like that all the time, and generalizing things was really challenging for her. She could shut down if she got too stressed out with language. She missed things in movies and books because they weren't explicitly shown/explained. But yeah, she was super social. And wonderful 🙂 

Edited to add: She also had really great language skills in some areas, and scored in the above-average range on lots of academic testing. When you averaged all her skills together, she was above average, but that included many high scores, and a couple rock-bottom scores. 

Edited August 17, 2019 by Mainer

[kbutton]

17 hours ago, Terabith said:

she fell in love with role playing around age nine

There are now role playing games that explicitly teach social skills and were designed as therapy in case that appeals to anyone listening in. I can't remember what it's called. I don't think it's software--I think it's cards, and it might be something you download and assemble. 

[Terabith]

13 minutes ago, kbutton said:

There are now role playing games that explicitly teach social skills and were designed as therapy in case that appeals to anyone listening in. I can't remember what it's called. I don't think it's software--I think it's cards, and it might be something you download and assemble. 

Yeah, I've heard of Dungeons and Dragons being used explicitly to teach social skills and such.  It's been amazing for her.  Social skills, anxiety therapy, even math rehab.  Plus it's given her a friend group, although I wish more of her friends weren't so much older.  She worries about what's going to happen when they all go to college.  I can't say enough good things about it, even non explicitly therapeutic as it is.  She reads about it, writes voluntarily, does math with dice, talks to people....

[kbutton]

16 hours ago, PeterPan said:

when people do the flipside (oh ABA is for low functioning/ID kids, so don't do ABA on your gifted/high functioning kid) that they're possibly turning people away from doors that could open.

Yes, they are. But we had to kind of use ABA principles and tweak lots of stuff. If we'd not gotten this impression AND had a diagnosis earlier, I think we'd have benefited from more ABA earlier on. There were some behaviors that straight ABA would've been the easiest and least painful way to deal with them for all involved. And I did manage to do something the looked a lot like ABA, but I had no support and wasn't really doing it the nicest way. I was just desperate and found something that worked enough to limp along. We also did some stuff that I now know was RDI-like. I just did what let me survive my child, and helped him understand the world better, lol! 

[kbutton]

20 minutes ago, kbutton said:

There are now role playing games that explicitly teach social skills and were designed as therapy in case that appeals to anyone listening in. I can't remember what it's called. I don't think it's software--I think it's cards, and it might be something you download and assemble. 

Ha, I think it's the same game the Peter Pan posted--I was thrown off track by thinking it was computer-based. I didn't remember it being that way. 

[PeterPan]

5 hours ago, kbutton said:

Ha, I think it's the same game the Peter Pan posted--I was thrown off track by thinking it was computer-based. I didn't remember it being that way. 

You're not crazy. There are cards as well.