What do DD's speech results really mean?

[Seeking Squirrels]

I received the results of DD8's speech evaluation today. She just turned 8, so the test was done at 7 y 11 m. Can anyone help me interpret these results? I'm not sure which is more relevant/standard, the scores or age equivalents, so I'll post both. 

 

It was the GFTA-2

error score of 3, standard score of 99, percentile rank of 24, age equivalent score of 5 years 10 months.

 

Subtest scores:

Sentence Comprehension: scaled score 12, perecentile rank 75, age equivalent 8 years 7 months

Linguistic concepts: SS 14, PR 91, AE  >8y11m

Word Structure: SS 11, PR 63, AE 8y7m

Word classes: SS 12, PR 75, AE 8y6m

Following directions: SS 13, PR 84, AE 9y11m

Formulated sentences: SS 6, PR 9, AE 5y10m

Recalling sentences: SS 8, PR 25, AE 8y8m

Pragmatic profile: SS 5, PR 5, AE <3y0m

 

So what really does it mean that her results are so asynchronous? What does that really low pragmatic score mean? She has started speech therapy, what can we hope to gain? Will we be able to "recover" the age gap or will she always be delayed in language? Besides whatever homework the SLP gives us, what can we do to help at home?

 

This is new territory for us because unlike her other dx we have received, the speech one completely blindsided us when the psychologist noted it in her full eval. She can speak really well most of the time and my only prior experience with kids needing speech therapy is when they cannot speak or struggle to do so. Since she can understand, and she can speak, where is the disconnect?

 

Edited to fix a typo in the scores.

Edited July 7, 2016 by Whovian10

[PeterPan]

Remind us, what is her DSM diagnosis?  And what intervention or unusual work by you has she had so far for language?  

 

Scaled scores have a mean of 10, standard deviation of 3 I think.  Google that, but that's what I recall.  There's not typically, at least for the way schools interpret them, an IQ discrepancy discussion with language.  *I* think there ought to be, because you can't, for instance, read at IQ level if you don't have the language skills to comprehend what you're reading.  So like if you want to say oh all the scores ought to be 12-14 because of her IQ (which I don't know, I'm just guessing), well technically you're not supposed to say that, again so far as I know.

 

So when you look at the scores that are high (fitting IQ?) and the scores that are low, we're noticing a spread of 3-6 or more.  So you're looking at relative weaknesses and discrepancy, even when the scores aren't absolutely low (scaled score 8).  

 

Some of those scores don't make sense. I would have expected a standard score of 99 overall to have been pretty close to 50th percentile.  They must have just had a lot clumped there or something. They've got a SS8 connecting to 9%ile on formulated sentences.  Maybe check those to see if you typed correctly.

 

So she's struggling to get out her thoughts and her working memory is low when she's using it with speech.  She failed the pragmatics.  So a social learning disability and difficulty getting out her thoughts along with low working memory.  

 

That's sorta the jist.  I'd take those last three and google for further explanations.  The other scores are all good, really good!  So the curious question is whether they're improved by therapy or whether there really is that discrepancy in her.  That's why I was asking what intervention has been done to this point.

 

What is the SLP proposing to do?  You can probably get her to average within a year, my guess.  My ds did.  Now on my ds, that score will probably drop over time without continued therapy, as his peers pull ahead.  But just to get it up, sure you can do that.

 

I would look up examples of what they were doing in the "formulated sentences" section to make sure you understand what it was testing and what you're therapy should be doing.  

 

 

Edited July 7, 2016 by OhElizabeth

[Seeking Squirrels]

Remind us, what is her DSM diagnosis?  And what intervention or unusual work by you has she had so far for language?  

 

ADHD, SPD (I guess this one isn't DSM, correct? but it is dx by OT. Primarily a seeker if it matters), GAD, possible SCD, and language delay

Nothing specific for language since we're only just learning this. She's had one speech therapy session.

 

Scaled scores have a mean of 10, standard deviation of 3 I think.  Google that, but that's what I recall.  There's not typically, at least for the way schools interpret them, an IQ discrepancy discussion with language.  *I* think there ought to be, because you can't, for instance, read at IQ level if you don't have the language skills to comprehend what you're reading.  So like if you want to say oh all the scores ought to be 12-14 because of her IQ (which I don't know, I'm just guessing), well technically you're not supposed to say that, again so far as I know.

 

An IQ discrepancy is why we were sent to speech eval. Her verbal score was almost 40 points below her reasoning score. She says she has the comprehension, but not the expression. That's just confusing to us because while on the one hand I see that, on the other, she is talking NON STOP. Soooo she does express. A lot. 

 

So when you look at the scores that are high (fitting IQ?) and the scores that are low, we're noticing a spread of 3-6 or more.  So you're looking at relative weaknesses and discrepancy, even when the scores aren't absolutely low (scaled score 8).  

 

Some of those scores don't make sense. I would have expected a standard score of 99 overall to have been pretty close to 50th percentile.  They must have just had a lot clumped there orsomething. They've got a SS8 connecting to 9%ile on formulated sentences.  Maybe check those to see if you typed correctly.

 

You're correct, I mistyped one of those. Formulated sentences had a SS of 6. I typed the overall scores correctly, so unless she transcribed them wrong those are correct. 

 

So she's struggling to get out her thoughts and her working memory is low when she's using it with speech.  She failed the pragmatics.  So a social learning disability and difficulty getting out her thoughts along with low working memory.  

 

This is the one I guess I don't understand. I'll be honest, I had to look up pragmatics. She can have a conversation, so maybe that's why I keep getting held up on the social communication thing, since I feel like she *can* do it, at least sometimes. But maybe she's not having the types of conversation she should be able to have by this age and we just don't know the difference, her being our oldest. The difficulty getting out her thoughts makes sense. I do see that. Repeating the same thing when we clearly need more or different info to help her or getting upset after the fact because we didn't realize an expectation. 

 

Is working memory the bit that holds on to something long enough to do it? Such as following through on an instruction? Just trying to piece together what we see in daily life that is stemming from this so we can better understand how to help her. I know it is a HIGH frustration for DH and I that we have to tell her a dozen times to do something and she still sometimes comes back not having done it. She'll tell us "I forgot" when there was no time to forget! "Go brush your teeth" She sits there. "I said go brush your teeth!" "Oh, I forgot!" And we wonder how she could forget when she should have just moved to do it. How was there time to forget? But is she? Is that really what's happening? I'm sure the ADHD also plays a part in this, especially when she does go to complete a task and comes back with it unfinished. But it is quite often that she claims she forgot when it was mere seconds. 

 

That's sorta the jist.  I'd take those last three and google for further explanations.  The other scores are all good, really good!  So the curious question is whether they're improved by therapy or whether there really is that discrepancy in her.  That's why I was asking what intervention has been done to this point.

 

What is the SLP proposing to do?  You can probably get her to average within a year, my guess.  My ds did.  Now on my ds, that score will probably drop over time without continued therapy, as his peers pull ahead.  But just to get it up, sure you can do that.

 

At her first therapy appointment she had her sequencing a story board and then prodding her along to make longer sentences describing each scene. She really struggled to put together longer sentences or string several together to tell the whole story. But what's interesting to me about this is that she loves to tell bedtime stories to her sister that go on and on and on. But maybe the difference is that those are open ended so there is no framework to make it right or wrong? 

 

I would look up examples of what they were doing in the "formulated sentences" section to make sure you understand what it was testing and what you're therapy should be doing.  

 

[Crimson Wife]

What is the full name of the test? "GFTA" typically stands for the Goldman-Fristoe Test of Articulation but the subtest names are wrong.

 

An IQ discrepancy is why we were sent to speech eval. Her verbal score was almost 40 points below her reasoning score. She says she has the comprehension, but not the expression. That's just confusing to us because while on the one hand I see that, on the other, she is talking NON STOP. Soooo she does express. A lot.

 

My child with expressive language delay talks non-stop from the moment she wakes up until she falls asleep. She just sounds like a younger child than her chronological age in terms of articulation, syntax, and morphology (things like using the -s suffix on 3rd person singular verbs). She's 7.5 but still says things like: He do wike [like] a apple. Expressive language test scores are not about the quantity of expressive speech but how they compare to same-aged kids in the norming sample.

[Seeking Squirrels]

What is the full name of the test? "GFTA" typically stands for the Goldman-Fristoe Test of Articulation but the subtest names are wrong.

 

 

My child with expressive language delay talks non-stop from the moment she wakes up until she falls asleep. She just sounds like a younger child than her chronological age in terms of articulation, syntax, and morphology (things like using the -s suffix on 3rd person singular verbs). She's 7.5 but still says things like: He do wike [like] a apple. Expressive language test scores are not about the quantity of expressive speech but how they compare to same-aged kids in the norming sample.

Yes, that's the full name of it. "Goldman Fristoe Test of Articulation-2"

 

She does have an immature sound to her speech, but not always. Sometimes I don't notice it and sometimes I do. (Although maybe it's always there just sometimes more pronounced) She also has anxiety and the more anxious she gets the more immature she becomes. Quite drastically actually. DH and I got in an argument last week that upset her and her actions and speech that evening were more like a 3-4 year old. The SLP noted as well that her voice "had an immature quality".

 

I guess we just don't see enough kids her age to compare to. We were the first in our social and family circles to have kids, so nearly every other kid we're around is at least 1-2 years younger. She is with same-age peers at activities and her charter program, but DH and I don't interact with those children. 

 

Nevermind! You were correct, I found it. The way the eval was typed up it was very easy to miss that she switched from the results of one test on to another. The subtests were from the CELF-5

Edited July 7, 2016 by Whovian10

[PeterPan]

Yup, CELF-5 subtests.  So google and you'll see sample reports, all kinds of things.  I actually like the CASL better, because it has more breakdowns on language.  The CELF just gives you that ONE section, and you're like ok but they're giving my kid a whole diagnosis (language delay) based on ONE section!  So if they have the CASL, it would give you tons of breakdowns.

 

 â€Žimages.pearsonclinical.com/images/pa/pdfs/casl5.pdf

 

That's the CASL subtest stuff.

 

‎www.pearsonassess.ca/content/dam/ani/clinicalassessments/ca/programs/pdfs/CELF-5-objectives-descriptions_cdn_lr.pdf

 

And that's your info on the CELF.  Both are normal tests to do, so it's not like she did something wrong.  I'm just saying if you feel like you don't see a roadmap there or an explanation for how they got to language delay, that's why.  And that CELF link gives examples, so you can see what was tested.

 

As Crimson said, quantity of speech doesn't not let you quantify where it's actually at developmentally.  My ds had tons of speech before Christmas, but it was largely scripted.   :ohmy: 

 

Remind us why, on a dc being diagnosed with anxiety, sensory issues, social communication disorder (autism minus 1), blah blah blah, they didn't get to autism?  Would your insurance coverage change with a change in diagnosis?  As long as you have enough coverage, you're ok.  And does she need an IEP or is she at home and staying at home?  State scholarships that come with an IEP?

Edited July 7, 2016 by OhElizabeth

[PeterPan]

The CELF pragmatics is pretty brief.  Our first idiot psych SKIPPED it on my ds, if you can imagine.  And not only that, but it's kind of subjective.  The Social Language Development Test, which hopefully they have, would give you a LOT more information.  There's this tendency to want to skip testing and get right into therapy, because testing costs $$ and involves hours that could have been spent on therapy.  Reality is, thorough testing gives you the BASELINE for any legal fights you have (IEP, insurance) and gives you a ROADMAP for how to intervene.  So I think it would be VERY reasonable to say hey should we be going back and doing more testing... I've heard about the SLD test and the CASL and I was wondering if those breakdowns would help us target...

 

In our area, neuropsychs and ps SLPs do the CELF.  It's shorter and gets the job done.  The CASL takes much longer, so your private SLPs do the CASL.  Be picky with the SLP and don't just trust her.  SLPs are worse than a dime a dozen.  There are tons and tons of them, and the less skilled ones COST THE SAME as the really excellent ones.  Just because you used one for an eval doesn't mean you have to stay.  Get the report, and if she doesn't answer your questions satisfactorily or have a game plan that is thorough, call around.  

 

Tests cost tons of money, and not every SLP is investing in every single test.  When you get someone who is working with a lot of autism, they'll hopefully have invested in more detailed tests to give you these breakdowns. Don't just roll with what they say.  Ask a lot of questions and double check it against common sense yourself.  Frankly, a LOT of this stuff is stuff you can work on at home.  They're going to offer you maybe an hour a week, and you become their cash cow.  If you had the CASL breakdowns, you could advocate better and figure out oh THAT'S what I need to work on!  Then you could go to Super Duper yourself and bring those things into your school day.  For our kids, therapy IS school.  How are you working on composition with a kid with sequencing and expressive language issues?  You're not.  The therapy becomes her academics, and you weave them together.  

 

MORE is more better on this stuff.  It's really FUN to work on, and it's NATURAL for a homeschooling mom to do this.  Now if you don't want to, you don't have to.  I'm just saying you can and that more testing would give you the breakdowns to do that.  Google the tests and see.  

 

The Social Language Development test has multiple breakdowns, and after you understand what they're testing you'll realize not only does it hit every day life, but it was actually impacting your school work in reading comprehension, etc.  How are you supposed to understand a story you read if you are having trouble with theory of mind and perspective taking?  The CASL also has a pragmatics component.  It's different from the SLD.  The CASL pragmatics asks they what they would say for lots of different scenarios.  The SLD has them go through lots of different situations so it can explore theory of mind, etc.  More breakdowns in the SLD.  But if you could see the CASL pragmatics administered, you would go OH, THAT'S WHAT THEY MEANT!  Any of things you can be a fly on the wall for would help you.  

 

The therapy process often draws a circle and excludes us, but if you can be in the room, even for the testing, you'll learn a ton.  This stuff is NOT hard to work on, but we don't realize what it is we're supposed to work on.

[PeterPan]

Yes, her working memory is that bad.  We've had threads on things to do.  You might get results very quickly.  I would encourage you to work on it multiple ways.  So like don't do all digit spans, bam done.  Work 3 or 4 times a day in little mini spurts, but work a different way each time.

 

-kinesthetically--give a 1 step instruction, she repeats it, she does it.  When she can do this with 1, move to 2, and so on.  MUST repeat it back, because that's our expressive language and auditory issues.  She needs to be able to hold the thought, SAY the thoughts, do the thoughts.  Can't rush just to doing.  It will probably be hard for her, which is why you'll want to back up to ONE step and make it very uncomplicated and doable (touch your nose, pat your head).  You can even drop the adjectives and just say "touch head" or "jump" if you want.  Then you could stay at one step but lengthen and work up to "jump two times" etc.  We did a LOT of this with my ds, because he has so much motion.  

-visual--play games like memory or logic games that show a set-up picture.  Show the card, let her study, then see if she can put the pieces in without the card.  Don't frustrate her. Just moving over (card here, toy 6" over) might be challenging at first.

-auditory--digit spans, can throw in metronome for bonus

 

and so on.  Shake it up.  Just lots of little bits of work on it.  How is her spelling and decoding?  Spelling requires a LOT of working memory, wow.  I can totally flip my ds out trying to get him to spell.  Obviously we're working up to it, lol.  We're using the Barton app, and the letters are in alphabetical order.  Even though we've worked and worked and worked on the alphabet, this is a new thing, so it's starting over.  So something as simple as holding "cat" in your head, finding the letters on the app, and pulling them down to spell is HARD!  So there spelling with an app would hit sequencing AND the working memory AND the spelling.  And you don't have to do any of that a lot.  Do each thing for 5 minutes and do a preferred activity afterward so she's motivated to have good behavior and get through it.  Good behavior, hmmph.  We mean good, but we're supposed to say appropriate behavior.  It's hard.  She might need to use calming strategies or be in motion while she does things.  But on all those, I think we brought in motion.  And during the app, if I were super brilliant I would be using a seat cushion and a thing under his feet.  Duh, that would be brilliant.  They're not expensive.  

 

Inflated Stability Wobble Cushion / Exercise Fitness Core Balance Disc

 

You can put one under her bum and one under her feet.  Or you can stretch one of those elastic stretchy band things across the legs of the chair for her feet to bounce on.  The input can calm her while she's doing this super hard work for 5 minutes.

Edited July 7, 2016 by OhElizabeth

[PeterPan]

Were the bedtime stories retellings of things she had already heard?  My ds was scripting, repeating large amounts of things he had memorized from tv, audiobooks, etc.  It's a stage of language development, and my ds was pretty wow at it.  So whatever he was scripting was complex but very discrepant from his original speech.  And his sentence structure goes down when put on the spot vs. what he can do when he's just in his own world going on and on.  In fact, when one of the SLPs recorded everything he said for an hour, what struck us was the *rigidity* of his constructions when asked questions.  Always the same construction.  Happened with another test too.  

 

You're not crazy, lol.  It just is this complex.  But that's WHY you're ideal to sort it out, because you're noticing these nuances of when stuff is more obvious and you're THERE to work on it!  You can weave this work into her day, and it will be fun.  More is more better, and really you can't mess it up.  You could go to Super Duper, buy ANYTHING you thought she needed, and have a good time and it would help her scores go up in something.  It's a lot like any other curriculum.  You just go with your gut and you'll probably be on track.  :)

[Crimson Wife]

These are about the previous version of the CELF, but they're still useful IMHO:

 

https://justanotherspeechie.wordpress.com/2012/12/06/celf-subtests/

http://speechbloguk.com/taking-mystery-assessments-celf-4/

 

FWIW, when my language-delayed child had both the CELF-4 and the CASL run in Jan. '15, she got higher scores on the latter. The CASL scores were still bad (single digits) but the CELF-4 scores were horrendous (<1st percentile). Now granted that was right before the discovery of the hearing loss so it's likely that it was lower than her actual language knowledge. She had the CELF-5 run 6 months later after receiving hearing aids and got similar scores as she had on the CASL without the aids. But since the CASL has not been run again, I don't know how she would score on that with the hearing technology.

[PeterPan]

I'm guessing there's research on how the two tests correlate.  I found a study showing a low score on the CASL pragmatics would correlate to a low score on the pragmatics portion of the CASL.  So if you wanted to know how sections compare, you'd have to look for research.  I don't think one child would explain it, because you have SO many factors going on.  During that time she was getting ABA, changed hearing, etc. etc.  For legal purposes a fail is still a fail, and of course that's why we look at standard deviations and standard scores, not percentiles.  And it can also happen that a dc has pockets of strengths there too.  The CASL just has SO many more sections.  You can spend hours and hours and hours administering it, because it has like 12 subtests.  The CELF is just quicker.

[kbutton]

http://www.eram.k12.ny.us/education/components/scrapbook/default.php?sectiondetailid=64607

http://www.kidspot.com.au/school/primary/learning-and-behaviour/speech-and-language-development-7-8

 

This article talks about internationally adopted kids and trouble with pragmatics, but the explanations are helpful--it talks about using different language for different situations and things like that. Those things are kind of hard to put your finger on, but once you see a description, I think it makes more sense. The terminology in this article is semantic-pragmatics deficit. It talks about kids who talk a lot (verbose).

http://www.smartspeechtherapy.com/what-are-social-pragmatic-language-deficits-and-how-do-they-impact-international-adoptees-years-post-adoption/

 

Since you have ADHD in the mix, you might search for a document titled "Hierarchy of Social/Pragmatic Skills as Related to the Development of Executive Function created by Kimberly Peters, Ph.D." I found it in a search, but it downloaded while I was looking at other stuff, and now I don't know what the original link was. It shows how executive functions relate to pragmatics and is broken down by age.

[kbutton]

Oh, on wobble seats--two-edged sword. They can be awesome or troublesome. With my kids, we mostly have to separate sensory work and academics because the sensory tools MAKE THINGS WORSE. Now, using a wobble seat while they are doing their thing with stuff they enjoy is different, and may help fill up that sensory tank to keep them on an even keel for work. We do use sensory stuff that way, but not during school.

 

I just wanted you to know YMMV. If it works to do it during school, more power to you. That's not what happens here!!!

[Lecka]

Here are some impressions I have about pragmatic language.

 

Idioms -- I think they are part of pragmatic language (not sure). They are a time you need judgment about how words are being used, literally or figuratively.

 

Conversation -- do you respond "appropriately." This is like -- do you directly respond to what was said, not with too much of a tangent or too off-topic.

 

Do you mix between questions and comments "appropriately."

 

Then, do you adjust your speech to the situation.

 

This means, you aren't supposed to sound too formal when talking to little kids. You would adjust your language to what would make sense to a little kid. You would also talk informally with same-age kids but not "talk down" to them.

 

You would speak more formally to a teacher at school.

 

There are also things like not correcting someone in a rude, blunt way.

 

Telling a white lie.

 

These are all the kinds of things I see mentioned that have to do with pragmatic language.

 

But I am used to seeing pragmatic language as the "speech therapy" version of "social skills." So I am used to them being used a bit equivalently. Because, speech therapists can work on social skills related to language use ---- and as far as I know, they don't have a separate "social skills" category, they include it with pragmatics.

[Crimson Wife]

 

But I am used to seeing pragmatic language as the "speech therapy" version of "social skills." So I am used to them being used a bit equivalently. Because, speech therapists can work on social skills related to language use ---- and as far as I know, they don't have a separate "social skills" category, they include it with pragmatics.

 

Social use of language would fall under pragmatics for SLP's. Non-language-related social skills would generally be out-of-scope for SLP's, though a SLP could target them incidentally, especially as part of a social skills group.

[PeterPan]

If you go to the end of that pdf link, you'll see what they do for the CELF-5 pragmatics.  It's subjective and from the little I've read not well-respected.  A profile questionaire and an "authentic" observation.  Fine, whatever.  CASL and SLDT are much more extensive and actually give you breakdowns.  So the failing it is a huge flag, but then there are just sort of a lot of *assumptions* about what areas to target.  You don't really know without more detailed pragmatics testing.

[PeterPan]

Social use of language would fall under pragmatics for SLP's. Non-language-related social skills would generally be out-of-scope for SLP's, though a SLP could target them incidentally, especially as part of a social skills group.

 

In the school, for an IEP, yes.  So if she were in school with an IEP, part of the pragmatics could result in SLP time and the rest would get handled by the intervention specialist who would consult with the SLP.  Depends on what the school SLP decides.  It's crazy.  So then *privately* when you're paying for it you can do whatever you can get funding for.  Our ABA is hitting a lot of stuff that falls under pragmatics.  Lots of ways to skin cats.

Edited July 7, 2016 by OhElizabeth

[Seeking Squirrels]

The psychologist said no to autism because she initiates conversation and wants to interact and maintains eye contact. She said what we’re seeing that sometimes looks like autism is really the language and anxiety playing off each other. I have no idea if it would change anything for insurance. As is they cover everything minus a co-pay. The plan as of now is she will be home next year, the psychologist thinks it’s not a good time to try ps because DD8 is terrified of the thought and we fear it would send her anxiety through the roof. We do however go through a public charter and they’ve said they will begin the process for an IEP, but I haven’t heard anything else so maybe it was just too close to the end of the year. I will ask again.

 

I would think where we are going would have access to any of the tests. We go through a local branch of the children’s hospital rehabilitation dept. It is a very good hospital (Primary Children’s in SLC, UT). I will ask today at therapy about further testing. It really seems such a low score would warrant further investigation into precisely where she’s failing.

 

I am completely game for working on this at home. In fact that’s something I told DH after our first speech therapy. I get so overwhelmed with what I learn in OT and I struggle to implement the stuff at home because it’s all so dependent on what’s happening, and how she’s feeling, and where her engine is, and remembering what to do when. But with speech, I was watching them thinking “I can do this! This can just be rolled in to our school day!â€

 

I found that CELF breakdown last night and spent time reading through it. I did wonder at why she didn’t do some of the sections when I saw it was 8 and up. She was tested 4 days before turning 8….should some of those be done? Or not worry about the CELF and focus on getting the CASL?

 

Thank you OhElizabeth for the ways to work on working memory! Like you said, this seems to be stuff I can easily do, it’s just knowing WHAT I need to do. Is there a good website or book that has more of this kind of information?

 

She does okay with spelling during the lessons, but doesn’t seem to retain it. We use AAS so a rule is presented, then she spells words using that rule. We go over the rule several times in different ways. Out of 10 words using the rule, she usually gets about 8 right. However, when we move on to the next lesson and a word also needs the rule we learned the lesson before, she likely will not apply it. Some of the rules we’ve been over and over and over and she still doesn’t apply them unless it’s the one we’re focusing on that day. She is slowly beginning to apply some of them more frequently, but she is definitely not to the point where she can spell all of the words she “should†have by now. We’re about 75% through level 2.

 

We have a core chair but it’s almost too distracting for her to use during school. I let her for some things but not for others! We have that wobble cushion, too, I just always forget to pull it out!

 

I will have to see if I can find a recording or two that I know I’ve taken of her telling bedtime stories. To be honest most of the time I was doing other things, or playing on my phone waiting for them to quiet down, not really paying attention to the story she was telling. So I don’t know if they were retellings or made up or even scripted.

 

I am saving all of the links and will look through them all as soon as I get a chance, thank you CrimsonWife and Kubtton!

 

I definitely see some of those issues Lecka wrote about pragmatics. She has a hard time with idioms, I have to explain every single time. Sometimes even when it seems she “gets†it, it’s almost like she doesn’t like them. She wants words to mean what they mean. We've also realized that sometimes what we've perceived as a behavior issue/disobeying/ignoring seems to be that she just took what was said VERY literally and does that instead of what was meant by an instruction. And we have to clearly say "no". We can't say "now's not a good time, maybe tomorrow." That's not a no and she'll just keep asking. 

[Lecka]

I am not saying this is autism or specific to autism, but you will definitely find ideas for these issues if you look into autism materials. A lot of materials that started out focused on autism, are getting used more broadly lately, it seems.

 

Socialthinking.com is a big name.

 

Really, though, there are probably a lot more materials/books/articles out there that say "autism" and that then talk about pragmatics and similar things like you are saying, than that will say "pragmatics."

 

That is just where the numbers are right now, I think. That is where the market is for books etc.

 

You could ignore the parts that do not pertain.

[kbutton]

The psychologist said no to autism because she initiates conversation and wants to interact and maintains eye contact. I don't know why people are told their kids aren't autistic because of this...my ASD kiddo does these things. It's not in the diagnostic criteria even though kids with autism can do this. It's something that can contribute to a diagnosis, but it's part of a list of things, and not all of that list has to be present to get the diagnosis. (Sorry, pet peeve.)

 

I found that CELF breakdown last night and spent time reading through it. I did wonder at why she didn’t do some of the sections when I saw it was 8 and up. She was tested 4 days before turning 8….should some of those be done? Or not worry about the CELF and focus on getting the CASL? You have CELF scores that show areas you can clearly work on. I would not sweat it, and when you want to do follow-up testing (a year from now, three years from now), you can seek out the CASL. That's kind of my take.

 

I will have to see if I can find a recording or two that I know I’ve taken of her telling bedtime stories. To be honest most of the time I was doing other things, or playing on my phone waiting for them to quiet down, not really paying attention to the story she was telling. So I don’t know if they were retellings or made up or even scripted. That's important because I think scripted language might fall under repetitive stuff, and repetitive stuff IS in the criteria for autism. I'd have to look at the diagnostic criteria again. I need to memorize the criteria. It's getting old to hear all the things used as excuses not to diagnose that are not definitive.

 

I definitely see some of those issues Lecka wrote about pragmatics. She has a hard time with idioms, I have to explain every single time. Sometimes even when it seems she “gets†it, it’s almost like she doesn’t like them. She wants words to mean what they mean. We've also realized that sometimes what we've perceived as a behavior issue/disobeying/ignoring seems to be that she just took what was said VERY literally and does that instead of what was meant by an instruction. And we have to clearly say "no". We can't say "now's not a good time, maybe tomorrow." That's not a no and she'll just keep asking. Those things are signficant and need work regardless of diagnosis. Also, if she gets "stuck" in loops like that, that's a big deal and kind of an autism thing. If she gets stuck like that a lot, it begs the question of whether if she was treated like she's autistic (you alter communication, get supports for structure, etc.) would the anxiety mostly dissipate (it does for my son). If so, I would wonder if she's anxious because she's on the spectrum vs. acting spectrum-like because she's anxious and has language issues. My son's anxiety tended to express itself in more oppositional behaviors, not behaviors you'd associate with anxiety. Maybe if had been anxious instead, they would have done the SCD + anxiety trick. My guess is autistic girls present with more anxiety.

 

Any way you slice it, you are getting answers and pieces that are things you can work on. I would move forward with what you can.

 

Are you considering an IEP because you'd gain access to services? In my state (and OhE is in the same state), and IEP is the key to getting funding for services. This is not always the case, so I wouldn't sweat an IEP if it's not advantageous. You can always work through that process letter to get college disability services etc., and you really only need a 504 for that. They don't use IEPs in college, but at the elementary and high school levels, 504 stuff is rolled into an IEP when you have an IEP.

[PeterPan]

Google, but it looks like Utah has disability scholarships.  If your state does, the *ps* can put your disabling condition as ASD if you meet the criteria, even if your psych didn't.  Chew on this.  ASD diagnosis by the school uses the legal definition, so look at the legal definition of autism in your state.  If she meets it, they can put ASD as her disabling condition in her IEP, which may get her a higher scholarship tier.  I wouldn't intervene on language till you sort that out.  Shouldn't take long, just a night of googlefu.  :)

[Crimson Wife]

I found that CELF breakdown last night and spent time reading through it. I did wonder at why she didn’t do some of the sections when I saw it was 8 and up. She was tested 4 days before turning 8….should some of those be done? Or not worry about the CELF and focus on getting the CASL?

 

All of my Communicative Disorders professors have stressed not to round up when calculating chronological age. It doesn't matter if the child's birthday is the very next day- the SLP is supposed to use the norms for X yrs, 11 mos. It's one of those "follow the rule rather than common sense" type things :glare:

 

You could go back for further testing now that she's 8 but I'd recommend finding someone who is familiar with HFA because what you were told was incorrect. My child with HFA is very socially-oriented and outgoing. She just struggles with interacting in an appropriate manner. Today at the splash area at a park she kept trying to grab a toddler's hand because she wanted to play with him.

[PeterPan]

Just to add, psychs *can* be wrong.  Our first psych told us ADHD-inattentive on ds, which is just LAUGHABLE, honestly.  NOBODY who has seen him since thinks that is correct.  And he was a really well-respected, big name np in this area!

 

Maybe you weren't seeing as much as you are now.  Did they run a GARS, Vineland, ADI-R, etc.?

 

What finally helped me, because we were getting told different things by different people, was to bring in a behaviorist.  She spent a lot of time with him, in his own environment, over a variety of days.  Some things are more obvious with time.  Then she could see his bad days, his good days.  At first I though oh no, she only saw him on his BAD days and she'll change her mind when she sees him on his good ones.  Nope, lol.  They just notice a lot more.  When the dc is in their own environment, they're a little more relaxed and show themselves more.  It gets really fascinating.  After a while, it was like wow I never realized that if someone comes into our house and just tries to interact, he's not responding.  If you take him somewhere and pin him down, put him in a room, sure you get a response.  But when he's just being himself, it's VERY different.  

 

Even forms like the GARS3 say to base the answers on 6 hours of observation and what would happen in a typical 6 hours.  For someone to say they saw the dc, dc did x, discussion is over, well that's just really brief.  

 

And the main reason it matters is funding.  Language is part of the federal definition of autism, so if you work on language and bring those scores up, you could undercut your ability to qualify under autism for your IEP.  If your state offers scholarships based on IEP, it could cost you big time.  You want to figure that out before you intervene.  Ask me how I know.

[Terabith]

Elizabeth, if someone was willing to travel for an autism eval for an older, very high functioning, articulate girl, where would you recommend?

[Lecka]

I saw Liane Holliday Willey speak last year and she mentioned the name of the place she was diagnosed, but I don't remember it. But it was near me (either Kansas or Missouri).

 

So for me, I think I would look into the place where she was diagnosed (and probably find out from google or her book that is autobiographical).

 

Spectrumnews.org has a lot about females, and I would look and see if any people or places are mentioned.

 

Those are just some thoughts.

[PeterPan]

Evals are a funny thing.  A big name person might be good, or they might be busy and use a lot of assistants.  I think it's more important that the person doing the eval spend plenty of time and really gather data and not just be quick about it.  Sometimes the Hoagies list will have hidden gems, because spectrum is so common in the gifted community.  If you find a BCBA who has been in the field a long time, they probably know some psychs who are doing a good job with girls.  

 

I think sometimes it's that we're seeing enough to get the diagnosis there but don't realize/recognize what we're seeing.  I've said this before, but as more professionals have come into our home, to see him on his turf, more has become obvious.  

[kbutton]

Elizabeth, if someone was willing to travel for an autism eval for an older, very high functioning, articulate girl, where would you recommend?

 

Definitely check Hoagies and then ask them things like "I have a very articulate daughter who blah, blah...could she still have autism?" Then see what they say. It might not fix it all, but it might help weed out a few.

 

The psych who diagnosed my son is on Hoagies.

[Lecka]

I think another issue can be the information you take in.

 

I feel like there are people here who are "penalized" for providing their children with safe, appropriate experiences and carefully chosen environments, and who then do not report some issues that would probably have come up without those things. But that can look like "there is no issue here" in a way that can come across like it is not consistent with a diagnosis.

 

I think there are also kids who lack other information that they would have if they went to outside school.

 

So I think it is important to be aware of that.

 

For the op here, for example, it sounds like she doesn't have any information about how she does socially with same-age peers, or about how her language/interaction compares with same-age peers. So it is just unknown if anything there might point towards autism, and then a lack of information goes down as "no problem in this area."

 

Although -- maybe someone filled out information and sent it in confidentially. I think that is something that is done where I am, so teachers don't have to worry about coming across too harshly to parents, bc they would not present information to them in the same harsh way it might come across on a form.

 

I am not really sure about that, but it seems that way.

 

But then another factor is with how the person filling out the forms interprets some things, and I think that person's experience and/or knowledge about ASD can heavily influence how they interpret behavior, and that can influence how they fill out forms.

 

It can influence what things they notice and what things fhey don't really notice or mentally explain in some other way.

 

I have heard from a couple of people locally in public school, that a teacher who is familiar with ASD can really provide corroborating information to support the diagnosis, when it might be hard to tell from some other directions, where a teacher who is not familiar is just not recognizing things and putting them together in the same way.

 

I have heard that the teacher's experience with a previous student is what has made the difference.

 

And it is not like I am saying that is all that is needed for a diagnosis or it is some simple thing..... It can just be an important part of the bigger picture, I think.

Edited July 8, 2016 by Lecka

[PeterPan]

Bingo.  You can go to all the psychs you want, but they're still going to be handing you the same GARS, ADI-R, Vineland, whatever, and you've GOT to have enough people who are seeing the behaviors enough that they can fill out the forms and mark them.  And if you look at the charts comparing the levels (ASD 1-3), that ASD1 area is where the casual observer does NOT get it.  They're NOT probably noticing things and making connections.  You might be putting her in situations where that type of behavior is structured out (high support) or a highly preferred activity or where it's so supportive (low ratio kids to worker, worker who has the energy, etc.) that things are just smoothed over.  

 

And what does it get you to go for a 2nd opinion?  If it gets you access and money for services, then good, but you still need to go when you finally have the dc with enough people who are seeing the behaviors that enough people can mark them on the forms.  That's for a DSM diagnosis.  And if you want the ps to acknowledge it, you'll also need to have data in-hand that fits the legal definition in your state.

 

If what you want is peace of mind, sometimes that takes time and becomes more clear with time.  With one of my dc, it took a long time for me to get peace with the idea that the psych was right that it was NOT xyz thing going on.  With the next, it took a long time for me to get peace and certainty that it definitely WAS going on.  Both paths are hard.  

 

I think whether the dc is on the spectrum or kissing the spectrum, you can still treat the social learning disability.  YOU CAN STILL TREAT IT.  So I go back to asking what a diagnosis would change.  Funding?  Access?  Your peace of mind?  Telling you what to do?  Because the truth is that if a dc is having issues with social thinking, rigidity, anxiety, sensory, etc., they still need interventions, no matter WHAT the final outcome is with the DSM.  And in general those interventions will be the SAME whether they're calling it ADHD with social delay, NVLD, ASD, whatever.  

 

So say you go to another psychologist and get a 2nd opinion just shortly after the first one and he's like oh yeah, concur, definitely not.  Then what?  You're not going to treat social thinking disability, anxiety, etc.?  Obviously not.  You'll still have to treat them.  Maybe you don't yet have enough people seeing enough.  Maybe the dc is young enough yet that it hasn't completely perked.  Or maybe those things are pretty normal in your house.  I'll tell you, there are things I didn't put down on forms because I had NO CLUE my ds was doing them.  He makes a LOT of repetitive noises!  They don't bother me, honestly.  Like I'm just OBLIVIOUS to them, they don't bug me, they're kinda peaceful, interesting.  Then someone else was saying their dc makes them and that it's common, and I'm like I don't know... So I started really noticing for a while, and then oh duh, there they are!  He has them a LOT.  I now have scads of video documentation of them.  But did I go into psych #1 noticing them to mark them on a form or complain about them and get that flagged?  Nope.  And that MATTERS.  That psych CANNOT diagnose what he can't see.

 

I would go back to the basics: want do you want to change with a diagnosis, who has seen the behaviors happening enough to be able to mark them on forms, how can you get qualified people more time with her in situations that are *not preferred* (meaning behaviors are more likely to happen) so they can fill out these forms.  For instance, our best person to fill out forms so far?  The person who monitors transitions and halls at Sunday School.  NOT the teacher, because they sit there in high structure for 30 minutes, nothing exciting happens.  But get him in transitions and all the behaviors come out!  It could be worth it to go for a 2nd opinion if there are things going on that didn't get considered or if a diagnosis would get you better access.  If a diagnosis gets you nothing, you could consider going ahead and treating the areas that need intervention.

[Seeking Squirrels]

Honestly my main reason for the IEP is because her ES (education specialist. Who we report to through the charter) suggested it. The testing was really hard on her last year and it makes it easier for the charter to opt us out if she has an IEP. As a bonus to that, we may also qualify for OT or Speech through the school which could save us a few co-pays. If we just opt out of the tests anyway, then I'm not too fussed about the IEP. But soon they may need it to document her delay in LA. All mainly so the charter doesn't lose funds based off of DD's lack of testing or low LA. 

 

Maybe I just haven't searched in the right places, but I don't see anything for disability scholarship in my area for just regular use. There is one for private school and some for college. That's all I found. 

 

CrimsonWife - that sounds like my DD. She is very outgoing and verbal, but there are just things she does that can be hard to notice if you're not paying attention or only around her sometimes. She doesn't recognize when her sister doesn't like what she's doing (tickling her, chasing her, getting in her face), she doesn't always notice people are talking to her. I always think "there it is" when I see these things but no one else is looking or there. 

 

On the shuttle to speech yesterday (they tore up the parking lot and we have to park farther away) a couple of nice ladies were trying to talk to her about her stuffed Dory. She was looking down and focused on her seat belt. "Oh is that baby dory" "mmmhhh". "Have you seen the movie?" :::DD tucks dory into her seat belt with her::: "uh huh" :::starts patting the seat next to her and bouncing:::: There was a bit more of this though I don't recall exact questions, but she never looked up, never looked at them, kind of occupied herself with the seat and belt the whole time. I ended up prompting her to ask them a question and then she finally looked up a bit and asked them quietly, but as soon as they answered she looked back down and returned to patting the seat and bouncing. 

 

I have seen her a bit with same-age peers. The charter is an all day drop off so I don't see her there but she tells me she has friends there. Well on field trips, I see her with these "friends". They all say hi to each other and do acknowledge each other and the others seem happy to see her. But then they often go off one way and DD another. They don't seem to wait for her or try to include her. She doesn't try to stay with them. She sometimes realizes they're not around and looks for them. But even if she finds them, she's usually only with them for a short time again before she just wanders off or they do and she doesn't go with them. So I see her a little bit with same-age peers, but what I don't get to do is spend any real time with those kids myself to hear how they're talking or how they carry on a conversation for my own comparison. 

 

ETA: Hit submit before I was ready. 

So is it okay at this point to say that I don't care what her official dx is or should be? Maybe there's autism, maybe not, but like you said, we do the same things regardless. I don't think it's going to benefit us to have since I don't even care about the IEP for personal reasons anyway. I don't want to delay helping her just so we can maybe get a different dx, or push for a certain dx just to validate what I see. I think I would rather at this point just do what we need to do to help her. 

Edited July 8, 2016 by Whovian10

[Lecka]

This is going to sound weird, but what kind of goals do you have for her?

 

For me, I honestly do want my son to engage with kids his own age and I want him to play with kids his own age.

 

I care about that a lot, I am into it.

 

I have a belief that it will be important to his future and his job opportunities and life opportunities as he gets older.

 

Well, is how things are going actually fine? Bc you are not intervening in this area. And that is fine if you don't want to!

 

But, if you got the diagnosis, it would (maybe) follow that you would be intervening more in more areas, bc it would be more like "there are needs to intervene, it might not just work itself out."

 

You also do risk sending a message, in my opinion.

 

People may think you don't want the label. They may not mention things they may assume you are not open to hearing. They may not make suggestions they may assume you are not open to hearing.

 

Maybe you area is not this way, but mine is. Some parents do not want to hear some things, and so many people tiptoe around things or don't mention them, and the reason is they don't want to upset the parent and/or don't want to offend the parent.

 

I think you may risk being percieved that way, if that is how it is in your area.

 

And I think that is not always the case, maybe parents ARE interested, but bc various people have had a strong negative response in the past, they hesitate to bring anything up.

 

Then, the only other thing I can think of, is -- maybe there would be some kind of social opportunity.... My son went to a day camp in June primarily for ASD, and there were kids who had a good opportunity to make friends. But you could look for that kind of opportunity anyway. You wouldn't need the label.

 

Anyway -- that is just my opinion. I think those are possible drawbacks, but I don't think it is a big deal. In my (very different) situation, if I think my son is at a social activity and not engaging with anyone very much, not joining activities, etc, I don't want him left to his own devices (I am not saying he never gets just play time to do what he wants though). I want him getting help as needed, and I want to know a breakdown of skills to work on. For me, I want that and I get that from autism-related therapy, not speech or OT. But I don't know if it would even work out that way for you, there is so much that makes a difference.

Edited July 8, 2016 by Lecka

[PeterPan]

The Carson Smith Special Needs Scholarship

 

I don't know what all there is, but this might apply.  Or you could call your Dept of Ed and talk it through.  Maybe homeschoolers can use the money by partially enrolling or something, dunno.  Our state is a little more generous and has extensive provider lists that make it easy to use the scholarships and homeschool.  But just talk with them and see.  And it's the kind of thing where even if you don't want it *now* you might want it *later*.  I think a lot about that now, like where do I need to be in a few years or what funding would people need to make things happen if I were unable to continue for whatever reason.

[Lecka]

I do worry that depending on what you DO want to do, maybe not having the diagnosis will be an impediment.

 

I think it depends on what you want to do.

 

If you want to go directly to providers, and know what providers and programs you want, and they are aware of "autism kind of things" and incorporate that knowledge (even though * they may not see it* as she may be working one-on-one with an adult who has no idea how she does with peers and may assume she is doing fine in that area) ----- then I do think it is not important.

 

But there may be recommendations that have never been given to you bc you don't have the diagnosis.

 

You may not even know stuff is out there, that might be a benefit.

 

Or, you may have a pretty good idea and know you are able to get the same things without the label.

 

But I think it sounds like she may be falling through the cracks in some ways, and I wonder if this would help?

 

It may be that you are better off just to make sure you bring things up directly with providers! That might be what makes the most sense.

 

Something that can be a characteristic of autism is that kids may act differently in different settings, so really ----- the provider may have no idea how she does with the kids at co-op or with strangers. It may be more different than is expected. It is something that is purposely looked for with autism, and without autism, I think it is assumed it is not going to be that different.

 

But I don't think it is that big of a deal. It is just my opinion, I think it is fine for you to leave it alone. I think either way is fine and it is up to you.

Edited July 8, 2016 by Lecka

[PeterPan]

You can use the "if this continues, will I regret later not doing xyz" kind of thing too.  Because once you're out of range for behaviors, then you're out of range and not really able to say oh we waited a year and that pesky thing went away.  So when my ds wasn't responding to people or when he's making repetitive noises or when he's hitting to communicate, I have to get honest and go if this continues, is it a problem?  If he's 10 or 12 and still doing this, is it an issue?  

 

I started to write this, and then I stopped.  A lot of what we do is conflicting, because we *like* the things they do as a result of their autism.  Like when they go into their own world and pursue xyz, they do really neat things!  And we pat ourselves and say SEE, that's why I homeschool, homeschooling is great!  Then you get them in a social situation and realize you might have gotten that other neat skill (memorizing audiobooks or college lectures or whatever), but you *didn't* get some other things that were important.  And SOCIAL skills will determine his ability to hold a job, have friends, etc.  Social.  Not how well I succeed with him on math or anything else.  

 

So I do feel that sort of inner conflict, like how much is appropriate, etc.  But reality is, all that's happening is my ds is realizing he actually ENJOYS those interactions.  And he modifies his behavior and increases in skills because he wants those interactions.  And that's all good.  And maybe some people work on that later.  I just decided it was ok to want that for him NOW.  He has a lot more fun now and more opportunities with improving social skills and behavior.  

 

My ds is so perpetually young to me that I really have to get him with other providers to have *them* step it up and see just where he could be with a little help.  I'm too close to things, too used to him.  They look at him and know what more he could be doing. 

[Crimson Wife]

 

So is it okay at this point to say that I don't care what her official dx is or should be? Maybe there's autism, maybe not, but like you said, we do the same things regardless. I don't think it's going to benefit us to have since I don't even care about the IEP for personal reasons anyway. I don't want to delay helping her just so we can maybe get a different dx, or push for a certain dx just to validate what I see. I think I would rather at this point just do what we need to do to help her. 

 

Yes and no. Having an autism diagnosis as opposed to a combo of other diagnoses gives the child much greater insurance coverage in many states because of autism mandates. In states with a disability scholarship, the autism one is often more generous.

 

That is the big reason why the neuropsych we saw last year deliberately did not run any autism tests. With that HFA diagnosis, we get guaranteed coverage of Applied Behavioral Analysis, speech therapy, OT, etc., etc. and the Medicaid waiver to pick up the deductible and co-pays. If she just had ADHD + SPD + working memory deficit + mixed expressive-receptive language delay we wouldn't get ABA or OT and the speech therapy would be a much bigger hassle to get approved.

 

I think the original diagnosis of "Global Developmental Delay" is the most accurate but GDD is only allowed up to the child's 6th birthday. DD just seems like a kid who is a couple of years younger than she actually is.

[Seeking Squirrels]

We actually are getting help with the social skills. She is taking a social skills class at a local place geared to autism and autism-like needs. Her evaluating psychologist referred us. She went weekly through June, then we couldn’t do the July classes due to the schedule, but she is on the call list for the ongoing class this coming school year. She did really well in them and has even referenced things she learned there.

 

We are also starting a co-op in September that is one day a week. Parents are present all day and spend the time volunteering in some capacity. I am going to volunteer to aide in at least one of DD’s classes each week so that I can see how she’s interacting and facilitate it when necessary.

 

She’s also starting therapy/counseling. Primarily for the anxiety, but I’m going to talk to him about social interaction too. I think her anxiety affects that a lot so it’s all related, regardless of which is causing the other.

 

Maybe I just haven’t encountered situations where not having or seeking the dx limits the info we receive. So far, I’ve gotten good input from people regardless of her dx. But I guess if the info isn't coming, maybe I wouldn't notice the lack of it?

 

I'm not against pursuing more testing, but I have a hard time speaking up sometimes. I always fear being the parent that's pushing for a dx because I don't want to come across like I *want* a certain dx. I tend to just accept what I've been told. 

 

Are you guys getting a strong sense of autism from my descriptions of her? Because it seems you're all trying to convince me to push for a dx. And that's okay! I don't mind at all. I just am curious if it's a "better to just be really sure, just in case" or a "I really think it's this and you need to push for it". 

 

....

I think the original diagnosis of "Global Developmental Delay" is the most accurate but GDD is only allowed up to the child's 6th birthday. DD just seems like a kid who is a couple of years younger than she actually is.

This is how I often feel about DD. Shortly before the full eval I even started doing searches to see if there was some sort of known condition or dx that was basically "really immature"

[Crimson Wife]

 

Are you guys getting a strong sense of autism from my descriptions of her? Because it seems you're all trying to convince me to push for a dx. And that's okay! I don't mind at all. I just am curious if it's a "better to just be really sure, just in case" or a "I really think it's this and you need to push for it".

 

To me, "ADHD, SPD, GAD, possible SCD, and language delay" with really low pragmatic language scores adds up to "red flag for HFA". I'm not a psychologist, psychiatrist, developmental pediatrician, neurologist, etc. and even if I were able to give a diagnosis, I couldn't do so without first interacting with the child. But as a future SLP/SLP Asst., if I had a client with that profile, I would encourage the parent to seek out further testing by someone with experience in how HFA can present in girls.

 

I am very glad that the director of my daughter's Early Intervention preschool encouraged me to have an eval by a developmental pediatrician. The preschool director is not qualified to diagnose, but she (gently but firmly) pointed out the red flags and she was not at all surprised by the HFA diagnosis.

[Lecka]

I am not quite at "I really think it's this and you need to push for it."

 

I think you need to push for a better evaluation than what she has gotten, b/c what you have gotten ---- if those couple of comments ARE the only reason that the diagnosis was ruled out, I think that is just not very good. If it is that there were several things and those are the two comments he/she made to highlight it ---- or something like that -- that is different.

 

I think it does sound great that you are going to be going in to her co-op with her next year. I think that will be really good! That is just the kind of thing I think is really good to do!

 

I would be comfortable, on one hand, with waiting to see what you see when you do that.

 

On the other hand, I would also want to really find out if she only can do certain things when you are there to support her. But if you are standing back and observing, then you can see how things are going, more.

 

I think you have missing information right now on that kind of thing, unless you did have her teacher/s there fill out forms, or ask them about this kind of thing.

 

To be honest, too, I think you, if you have not already, might consider reading up a bit more on girls with ASD, see what the things are that are jumping out to me at least as red flags, and then ---- if you ARE seeing those things, then maybe you need to be ----- pushy is not the only word, but very strongly informative about what you are seeing.

 

Bc, I feel like ----- it is GREAT that she is in social skills classes, it is GREAT they are going well, it is GREAT that she is bringing things up from that.

 

But then ---- so why is she not doing that when you see her on field trips? Like -- what is the missing piece there?

 

And if it is anxiety (like anxiety and not ASD, even though anxiety is very often something going along with ASD) then maybe there is more to do in that area. I don't know very much about that area. But I think it is worth finding out.

 

And yeah, if it does turn out to be ASD, then yeah, I think there are probably things you don't even know you don't know.

 

That doesn't mean I think there is something she isn't getting, exactly, but it can just make things easier to know, and to look into things with an attitude like "this is what I am looking for" and not like "hmmm, I am browsing, I don't know if I should be looking at this or not, hmmm." And -- that is how I am. I do not really commit, at a certain point. If you would research and read and do strategies the same way ----- then good for you!

 

But I don't think you have so far, kind-of, b/c I think if you had you would also be going "wow, I am certainly seeing a lot of red flags." If that makes sense. It is just how it comes across to me.

 

But I am very biased! Very, very biased!!!!!!!!! And I understand if it is not really the situation you have, just because I am getting an impression. It is hard on the Internet, and then it is hard anyway even without the Internet sometimes.

 

Then something with me too, my son is doing very well with a therapy that is really ONLY for autism. But ---- it might not even be recommended for your daughter, it might be a non-issue. But if she might be recommended for the same therapy my son does, b/c it is believed it would help her, then I think it is So Totally Worth It.

Edited July 10, 2016 by Lecka

[Lecka]

I am also just going to point out, that I understand feeling like "she is immature." Well, keep in mind, for "she is immature," in practice CW's daughter is diagnosed with HFA and is doing (or has done) the same "only for autism" therapy as my son.

 

And so.... even if maybe HFA is not really a great label, it would make more sense to say "she is immature," etc., I am just the kind of person who thinks -- saying she is immature doesn't get you the "only for autism" therapy.

 

Which -- may be a non-issue, and I am sorry for para-phrasing and speaking from another person's point of view that may not be how CW feels.

 

But that is my opinion, to some extent.

 

I also do not want to over-sell this therapy, b/c it is not like it is the only thing out there, or that everyone gets it recommended. It is what was recommended for my son, so it is what I know.

Edited July 10, 2016 by Lecka

[kbutton]

I am not quite at "I really think it's this and you need to push for it."

 

I think you need to push for a better evaluation than what she has gotten, b/c what you have gotten ---- if those couple of comments ARE the only reason that the diagnosis was ruled out, I think that is just not very good. If it is that there were several things and those are the two comments he/she made to highlight it ---- or something like that -- that is different.

 

To be honest, too, I think you, if you have not already, might consider reading up a bit more on girls with ASD, see what the things are that are jumping out to me at least as red flags, and then ---- if you ARE seeing those things, then maybe you need to be ----- pushy is not the only word, but very strongly informative about what you are seeing.

 

 

And yeah, if it does turn out to be ASD, then yeah, I think there are probably things you don't even know you don't know.

 

That doesn't mean I think there is something she isn't getting, exactly, but it can just make things easier to know, and to look into things with an attitude like "this is what I am looking for" and not like "hmmm, I am browsing, I don't know if I should be looking at this or not, hmmm."

 

:iagree:  Very well stated.

[PeterPan]

So the real question is whether they're recommending ABA for SCD, and my googlefu is showing yes.

 

Social Communication Disorders: Treatment

 

I think if the skills from the sessions are not generalizing and carrying over to life, you want some help to get the skills to generalize and carry over to life.  So ASHA is saying to get that carryover ABA can be appropriate, even if it's being called SCD, not ASD. 

 

But you know try things, walk the journey.  Everybody has opinions on what you need to do.  I waited on ABA, because I had multiple, multiple people tell me not to do it.  Now I've got ABA in, and we're seeing benefits. It's really good for getting those once a week sessions to carry over to life.  But I had these discussions on here for several years before I made that move. I think it's ok to want to be very convinced in your own mind that what you're doing makes sense.

 

As for the evals, you'll eval again at some point.  It's only a matter of when.  I wouldn't eval just randomly but would wait till you have some sense that you've gathered enough data that you'll be able to uncover things that point to a different outcome.  That could involve some ABA and having her in with people who are doing non-preferred things and seeing those behaviors come out.  Data has been HUGE for us.  Letting them see him on his turf has been huge.  I think it's pretty telling when you talk about the level of support she'll need for co-op.  Or I missed it.  I forget things and have probably forgotten.  I think if the co-op class is highly preferred, you might not see much.  I think if she holds it together there and then is struggling the next day with you, that's really telling.  For us, I actually needed to collect ABC data to see the patterns.  For us *transitions* were a huge deal.  I don't know what your dd's huge deals are, but collecting ABC data for a week or two would give that to you.  You might find patterns you weren't expecting.  When I get in with professionals, they can anticipate (guess) the patterns even before I do, because they just have that much experience.  They'll piece things together faster and see the patterns.  I miss it because I'm so close.  

 

Will your insurance cover ABA if your diagnosis is ASD but not if it's SCD?  Since the ASHA is saying ABA for SCD, can you fight for that coverage?  It's all about the money.  If they'll cover ABA no matter what, you could fight for more intervention.  I would want those skills generalizing.

 

I'll just throw this out, but probably the hardest thing for me with ds is how low my bar is.  I'm so used to where he's at that I lose track of what other kids his age or IQ are doing.  So then I don't see where he COULD be with more supports.  I just kind of drift along.  I'm not saying you're doing that, just that I do.  And these providers come in and they see where he could be.  Like the first time the behaviorist came into my house and ds started hurting me and she says "Ds, are you making a good choice? We need to make a better choice."  And I'm like no, he can't make a choice, he's FERAL, why are you asking him to make a choice and stop and control his behavior?!?!  Then I realized how far I was in my expectations, that I had drifted SO FAR into his land that I was never going to be able to see, on my own, where he could get to.  

 

That's why I bring in fresh eyes now and these tutors and things, because they can step it up.  Take that anxiety.  ABSOLUTELY that would respond to supports!  And are YOU the one, all by your lonesome, to deal with it?  Is a dc with anxiety going to be able to implement all those changes, on her own, with just once a week counseling?  That's a lot to expect, to my mind.  It would be compassionate to say we're bringing in some support so she can have daily practice in using her tools, daily practice with someone who is fresh and calm who can sit down with her in the situation that provokes it and say ok, let's use our tools...  That's what they do.  And when Mom does that alone, in theory you could.  It's not actually that rocket sciency.  But when Mom does it, Mom is already exhausted.  Mom has a headache and needs coffee and has bills and...  So then someone else comes in fresh, and THEY do it, and mom gets the benefit!  Then Mom sees ok, this is their strategy, and the dc has used the tools enough that they can actually implement them with the prompt from Mom and not a whole ordeal.  Then it's like wow, we actually improved our function in life here!  And it was all quiet like that, just some fresh people coming in who were doing the same things you would do if you were Wonder Woman.  

[Crimson Wife]

 

Will your insurance cover ABA if your diagnosis is ASD but not if it's SCD?  Since the ASHA is saying ABA for SCD, can you fight for that coverage?  It's all about the money.  If they'll cover ABA no matter what, you could fight for more intervention. 

 

One of the arguments in favor of getting rid of the separate Asperger's diagnosis in DSM-V was because of the difficulty that families were experiencing getting ABA approved for kids with Asperger's (even though Dr. Lovaas actually saw *GREATER* improvement with them than with kids who had "classic" autism). What has happened in practice, however, is that many evaluators are giving the SCD label instead. SCD is not covered by autism mandates.

 

The neuropsych we saw at the clinic for the deaf & hard-of-hearing thinks that ABA is effective for more than just ASD. She thinks it would benefit any child who struggles with language and social skills. But the research has focused on ABA as treatment for autism rather than other conditions, so that's why it is typically only covered for those with an ASD diagnosis (and not necessarily even then depending on whether state autism mandates apply).