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What to do with 5yo. Speech and possible learning issues

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My son is 5 years 3 months old. He's been with several different SLPs since he was 2 and a half. I think I've finally found one who knows what they're doing. ? He is only intelligible to other people probably 20% of the time, and to us about 75% of the time. This lady has noticed some oral motor weaknesses and mentioned apraxia, but says she doesn't want to diagnosis him until she's seen him a few times. That's not really my main concern, even though it probably should be. I have a good friend who suspects he has a learning disability, possibly mild form of autism. 

The thing is... He doesn't really have any of the social risk factors/symptoms. Well, he may be a little awkward with kids he doesn't know. The things that do concern me, besides his speech, are the fact that he can't learn songs or nursery rhymes, he doesn't know what certain things are called (like the toaster or laundry room) and his complete lack of interest in our puppies or  my grand baby. I thought that was a boy thing, but I know plenty of boys who like puppies and babies. But maybe that's just a personal preference thing?? And since my friend said he needed the ABLLS or VB MAPP and I've been researching those tests, I've realized my son doesn't quite understand opposites, and doesn't  know body parts, like elbow, knee, ankle, or shoulder. 

I called around and found a place that can administer the VB MAPP within a couple weeks--as long as it's self pay. But when trying to schedule a full autism and IQ test it could be months! 

I don't really know what my question is, I just wanted to talk to people who might understand. Because everyone around here says, oh he's just a boy... He's just a late talker... There's nothing wrong with him...

 

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Apraxia can be diagnosed in one session by someone who actually knows what she's doing. It's a specialized field. The therapy to look for is PROMPT, and it takes several years to become certified. There are levels of training (intro, bridging, certified, instructor), and I would not use someone who has only done Intro unless they are committed to getting certified and committed to PROMPT. Many people who've only done the intro training think they know it, blend, and aren't doing it correctly. 

So if you get someone who is highly trained in PROMPT, they will diagnose him same day. And the difference in therapy is so radical, you'll be glad you made the change.

Next, yes, he should be eval'ed for autism. You want the ADOS. The ABLLS and VB-MAPP are terrific tools, but they are not for diagnosing autism. They do those to establish the developmental holes and where to start intervention. You should DEFINITELY do them. 

The real issue is funding. Most people get the autism diagnosis so they can get the ABA (which is what you're talking about, Verbal Behavior Approach falls under ABA) covered by insurance. So you're not just asking for an eval. You need all the ducks in a row so you can get things covered by the state medicaid or your insurance or however you plan to pay for things. Figure out the funding. 

Yes, there can be a 6-9 month wait for an autism clinic. What I suggest you do is get on the waiting list for the first autism clinic, then keep calling. Call autism schools. Just keep calling. If you find someone else who can get you a full autism eval, including the ADOS, sooner, fine. If not, then at least you've got an appointment. No, it's not enough to do the VB-MAPP and just start intervention. You won't have funding to PAY for the intervention. BCBAs are $100 an hour around here, and most kids need significant service, like 10-20 or even 30-40 hours a week, though much of that can be with lower priced people (RBTs, etc.). They can teach you things, but that $$$ is just not sustainable for most people without insurance or other coverage.

I suggest you put your time right now while you wait into getting an expert in apraxia. The PROMPT site has a provider locator.

Yes, there's a book people talk about that says late talkers statistically outgrow it, blah blah. Well two observations. One, there's actually a gene for apraxia and my ds has it. That wasn't known or easy to verify at the time that stupid book was written. Two, my son isn't a statistic. Just because waiting worked for someone else doesn't mean it would have been the right choice for my ds. My ds had easily verified patterns of apraxia, patterns an expert can elicit and identify easily. Genes plus obvious diagnosis. Why would I have waited? Total crap. Your kid is not a statistic, and he's 5. It's time. 

It's hard, and it's a long journey. You want to surround yourself with the best people and not get sucked into letting therapy be personal. Someone can be a great human being, but at the end of the day I needed my ds to be able to talk. I've driven 2- 2 1/2 hours each way weekly for almost 8 years to get my ds PROMPT. Totally worth it. See what you can find. 

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My 9-year-old has used VB-MAPPS and ABLLS.  I think they are awesome.  

They can be used for language delays, not just autism.  

They aren’t used to diagnose autism.  They are more of a collection of skills, and going through them lets you (or really the therapist to some extent) see what skills the child has and what skills will be the best ones to target.  It can be hard to know what to prioritize and what to wait on, when there are a lot of different possibilities, but maybe it will be best to target a few goals at a time just to be practical and help maximize the child’s learning.  

Anyway — I think so much depends on where you live and your options.  What would money be better spent on, depending how much money is available.  There are times when if you look ahead a year and prioritize money it might make sense one way or another.  Maybe your friend can help you with this thought process.  

Anyways — to be practical, if your child would qualify for a free VB-MAPP then maybe it makes sense to get an autism diagnosis and then get the VB-MAPP for free a little later.  

If you will have to pay anyway then that is not an issue.

You might have coverage of some kind available, and need to get it and then save your money for other things. 

If there’s a provider for the VB-MAPP and they have a receptionist, the receptionist may do their insurance billing and be able to help you out.  Or maybe there is a thing to do locally and maybe your friend can give you advice.  

Other than that, which I am sorry is so cold sounding, I think things will be okay:)  I like this book https://www.amazon.com/gp/aw/d/160918470X/ref=pd_aw_fbt_14_img_2/135-4628218-3666540?ie=UTF8&psc=1&refRID=FT5D7RNWGF7KTC43WTE9 and it might be available at the library.  

Anyway, things will be okay :). Others have been down this path :). And — it could be just a language delay, too, I don’t think you can tell without looking into it some more.  

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Also, I recently needed to update my son’s autism diagnosis, and it was an hour appointment with just the ADOS.  So if it turns out you need a diagnosis to access services, which can be the case sometimes, you may not need the whole shebang immediately.  Maybe you can get a provisional diagnosis in some way or a shorter easier-to-get appointment sooner.  

Just some thoughts.  

These are questions you can ask or you can ask things more generally like what is the best path forward in your area.  You can ask if there are nay other waiting lists to get on (to have options later) and you can ask if there are other good resources to consider.  And then hopefully find out how things work locally :)  

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I got similar comments about not wanting to see any kind of issue.

I think for one thing, people are just not aware of some things.  

For another thing, they can hope there is no issue.  

And then, sometimes people see what they want to see, but they don’t see the big picture.  They see the thing that looks good in the midst of some things that seem problematic.

And then people can be scared and hope there is no need to have anything “bad” or “scary,” and have bad/scary impressions when it is not warranted.  

Anyway, more information, when you have it yourself, can go a long way.  

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https://www.marybarbera.com/

Also, I really like this woman!  She does a LOT related to the VB-MAPP.  However — more with levels 1 and 2 or early and intermediate.  It goes through level 3 so it is maybe/maybe not.  

I think she is really good, though, and she has stuff about the VB-MAPP on her website and with YouTube videos.

My son was a little later diagnosed and we had some false starts with him not being identified, and I ended up watching a lot of stuff with toddlers and pre-schoolers when my son was older.  Well — that is okay, if it is the right stuff for where a child is at, it doesn’t matter if other kids were at that point when they were a younger age.  It used to bother me a lot, though!  But my son was definitely learning and exposed to good things at home, even if he wasn’t a child to be identified at a younger age.  Also I definitely did the best I could with the information I had at the time!!!!!!!  But this may not pertain to you at all, it did to me though.  

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Thanks for the replies! 

I looked up a PROMPT person in my area, but they aren’t currently taking new clients. Boo. I’m putting a call in to the one other lady in my area who is listed on the PROMPT website. 

The place recommended to me for the autism testing has a long wait, and they won’t even talk to me until my doctor faxes them a referral. My girls had a well-check appt today and I asked the pediatrician about getting him a referral for testing, but she wants me to make an appt so we can sit and talk more about it. So I’ll be going next week for his appt. 

i called to schedule the VB-MAPP with an ABA institute a few towns over, and they had a cancellation so we are going Thursday and Friday for that. I’ve decided to just pay out of pocket so we can see where his deficits are and I can get a curriculum/plan worked out to hopefully get him ready for Kindergarten in the fall. And then once he has the testing done we can begin whatever therapies he needs and they will hopefully be covered by insurance. 

My friend recommended Mary Barbara’s book verbal behavior approach and I’ve been reading it. And I just ordered the Kindle version of the one you linked, Lecka, so I’ll get started on it tonight. 

So one new question I have is do I need to buy both parts of the VB-MAPP for myself? I know the director of the ABA institute said the book is copyrighted so I would only get the scoring sheet. 

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That sounds great!

No, don’t buy a VB-MAPP.

Wait and see what happens if you need to or not.  If you don’t need it bc he ends up scoring pretty well or pretty consistently (like you can just continue with your good speech therapist) then you don’t need it.

If you do ABA and they use it, they might do online VB-MAPP.  That is really common now.  Then, for me, the ABA agency could buy it at a discount bc of bulk purchases, and they just provided it.  

It’s something that is on the hard side to figure out as a parent, to be honest.  There is technical language, and then there are goals but no programs for how to reach the goals *included in the VB-MAPP.*  There is a companion book I think has program ideas (how to teach the goals) but I don’t know, it is more something the therapist knows about if you end up having a therapist.  Then as a parent you can talk with the therapist and read the Mary Barbera book (which is on the hard side but easier than other things).  And then also read more generally.  But the Mary Barbera book is the book for parents to go along with the VB-MAPP.

So I think wait and see if you end up doing ABA therapy and if you do, talk to the therapist.

I think at this point see if you can talk to your insurance.  They might accept the VB-MAPP provisionally, while you wait for another appointment.  It will depend on your insurance.  They have their own rules.  You just have to try to find out.  If you can talk to someone who has your same insurance, or someone who knows about what different insurance plans cover, it can be helpful.  Another parent or a receptionist who bills different insurances might be able to tell you some information this way.

We have military insurance and the coverage is excellent, but it is often difficult to find out information and very confusing. 

I hope the ABA agency will hook you up with some good information when you go for the VB-MAPP!!!!!!!!  I hope it will go well :)

It’s also really possible there is stuff along the lines of “tell the speech therapist we suggest this” that might come from it.... I have spent a lot of time carrying messages like this back and forth lol.  It can be good to coordinate goals, it can mean faster progress hopefully.  

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If it is something where you can work with him yourself (practically speaking) you might be able to pay the ABA agency to “consult” to write some programs that you implement with him at home, and do self-pay.  I don’t know if that would be a good thing to do for your situation, but it is a thing people do sometimes when they are able to work with their child and then pay for the program planning and some time to practice doing it with feedback.

I have not done that but some other parents with the same ABA agency did it, who did self-pay.  

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He went to the first half of his VB-MAPP today. They had group therapy for part of it, so the BCBA was able to observe him with peers. When she was talking to me afterwards, I looked at her papers and there were about forty lines and only 4 checks! She said that while he did play well with the other kids, he lacked a lot of social skills—he never asked them questions and couldn’t or didn’t have any back-and-forth conversations. Other things I can’t remember. I did ask her if she felt he needed further testing, and while she made it clear she doesn’t diagnose she said testing would definitely be helpful. So we’ll go back tomorrow for about 3 more hours and see how it goes. She said they enter all the info into the computer and then send me the report. 

I hate waiting for answers! And although part of me must realize it bc I’m taking him for this assessment, it’s still really hard for me to believe there’s anything wrong with him—other than speech problems. 

Oh, she also said academically he had gaps. Not knowing most of the letters and sounds, not writing numbers, doesn’t know the letters in his name. But I feel like that’s probably my fault bc I’ve been so overwhelmed with life and homeschooling my two girls. ? I definitely don’t want him getting some label just bc I haven’t taught him well enough. 

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I promise you if he had parallel play he has more than 4 check marks.

She might have a condensed sheet in some way or maybe there are places where one check means a whole category is filled in, instead of doing individual check marks within the category.  

And then if she said he played “with” other kids like actually “with” them, then that is more than parallel play!  

The things she mentioned are concerns, but it doesn’t sound like he is bombing it!  Definitely not!  He does have some concerns, but you are finding out about them specifically so you can help him learn these skills.  Kids do improve!  

Good luck tomorrow :)

Edit:  what I mean by a condensed sheet is, maybe she has a paper that is just looking at higher skills because they aren’t assessing the lower skills because they can tell he has them from talking to you or spending a little bit of time with him.  

If he needs to work on initiating conversation with peers and sustained back-and-forth interaction ———— really there are so many quality ways to work on this, and it is really not too bad.  It is too bad now, but think how nice it will be when you see him make some progress :)  It goes a long way :)  

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1 hour ago, Lecka said:

I promise you if he had parallel play he has more than 4 check marks.

She might have a condensed sheet in some way or maybe there are places where one check means a whole category is filled in, instead of doing individual check marks within the category.  

And then if she said he played “with” other kids like actually “with” them, then that is more than parallel play!  

The things she mentioned are concerns, but it doesn’t sound like he is bombing it!  Definitely not!  He does have some concerns, but you are finding out about them specifically so you can help him learn these skills.  Kids do improve!  

Good luck tomorrow :)

Edit:  what I mean by a condensed sheet is, maybe she has a paper that is just looking at higher skills because they aren’t assessing the lower skills because they can tell he has them from talking to you or spending a little bit of time with him.  

If he needs to work on initiating conversation with peers and sustained back-and-forth interaction ———— really there are so many quality ways to work on this, and it is really not too bad.  It is too bad now, but think how nice it will be when you see him make some progress :)  It goes a long way :)  

Thank you.  I understood what you meant about the condensed sheet. I’m sure there’s more to it than just 4 checks. Lol. 

Will insurance pay if he needs some sort of social skills therapy, even if he doesn’t have a diagnosis? Or will I just work with him at home?

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It will depend so much on your insurance.  

My insurance would not cover ABA without a diagnosis, but it might cover speech therapy with social skills goals (this is often called “pragmatics”) and it might cover OT with social skills goals and it might cover a counselor to work on social skills goals.

My insurance will not cover group speech, and so my insurance will not cover social skills groups run by speech therapists.  

It just depends on the insurance!  

 

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I have more questions and realized I never updated here. 

Btw, I have been enjoying and learning from the thread on "narrative language in autism" . That's a wealth of information, but I'm only on page 1. Lol

The VB-MAPP showed deficits in social skills (asking WH questions, engaging in conversations with peers, etc), and academically he is behind--only knows a few letters and numbers. There was a lot more to the assessment, but I'm trying to give highlights. With the evaluator's report, and looking over the VB-MAPP scores, I was sure there would be an ASD diagnosis. So I scheduled an appt with a psychologist and went for the initial appt. Filled out tons of questionnaires and then we went back for the "testing" :

The doctor first did an IQ test which took 15 minutes; he said Bryson was average and did fine. It was the KBIT-2. Nonverbal IQ was 11 points lower than berbal, but all were at the low end of average. Then he had me and an assistant in the room while he did the ADOS. It took 20 minutes! I am assuming that most of you are more knowledgeable of these tests than I am. While he said all the questionnaires I completed diagnosed autism, he said (even after just 5 minutes) that he saw no signs of autism during his observations. I have been reading about the ADOS since I got home, and usually it involves a pretend birthday party and a doll with a bed or bottle to assess imaginative play. Also, there are usually questions about emotions and relationships. None of this was done. He just kept saying, oh, he is much too social to be on the spectrum! 

This is what took place: My son told the assistant about Minecraft. She asked a question, and he ignored it and continued talking about Minecraft. The doctor said, “it’s been hot out. Have you been swimming in the pool”? He said no. I was like, “um, Son? You haven’t been swimming? Where’d we go yesterday”? And he stared at me. I reminded him we went to Uncle’s party ALL DAY yesterday and swam. 

So, then he told my son to play with anything. He started stacking blocks and the doctor started playing with a remote control car. My son watched him and the doctor asked if he wanted to play. So then He played with the car. 

That was it. Is that enough to exclude the diagnosis? Am I to be happy that my child isn’t on the spectrum? Or do I need a second opinion? I told the doctor my concerns about the way he can’t answer questions or remember memory verses or sing songs that we’ve sang his entire life. The doctor said, so he has a language problem, not an autism problem. 

He did say that my son would benefit from the 2-3 hours a week of the social skills class that the autism center had recommended. And also said he would recommend language therapy. 

I spent 2 years ignoring symptoms and telling people there was no way he had autism. Then I spent the last 2 months trying to figure out what was wrong with him and accepting autism. And now he’s a normal little boy with just speech issues?? 

Anyway, the last two speech appts our slp did the CELF-5 (I think) with him and I'll be getting those results later this morning. We will be adding in another 30 minute session each week for language therapy. 

I have also been texting with an BCABA who does in-home ABA.  He comes this afternoon for the interview. He said he is trained in VB, but on his resume I don't see much to show that. So we shall see. ? I bought the Ablls, and I'm hoping he can eventually do the ablls and set up a plan so.that I can follow it at home with minimal.visits from him--afterall, insurance isn't covering any of this. ? I'm.not sure what to expect, really. I guess ill have more questions later. 

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The ADOS doesn't sound comprehensive to me, but our psychologist didn't use it with my son.

My son seemed "too social" to have ASD too, but he does. I would want a second opinion from what you've said, especially if the questionnaires point to ASD. 

The way your son plays as described in your April 26th post sounds like the way my son played at that age. 

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3 hours ago, kbutton said:

The ADOS doesn't sound comprehensive to me, but our psychologist didn't use it with my son.

My son seemed "too social" to have ASD too, but he does. I would want a second opinion from what you've said, especially if the questionnaires point to ASD. 

The way your son plays as described in your April 26th post sounds like the way my son played at that age. 

If he didn’t do the ADOS, what was used to diagnose?

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That’s exactly it — he DIDN’T run something that could diagnose it, it sounds like.

He chose not to do things to diagnose it based on his impression that your son is too social.

So he didn’t actually do things to diagnose it.  

Like — he used his clinical judgment not to look further into who-knows-how-many things, based on his impression and initial stuff.

Autism is one of those things.

For experience with VB — if the person seems to have solid experience and training with the VB-MAPP and/or ABLLS, those are both basically VB things.  To some extent working with those are going to imply experience with VB.

A lot of experience will come through training.  

There is a grad level course called “Verbal Behavior” that I know my son’s therapist took, but it was more advanced than day-to-day stuff using VB-MAPP or ABLLS.

A BCaBA may need to be supervised by a BCBA.  I would ask about that I think.  

I do think it’s good to ask about training and experience, some people can seem like they have done the bare minimum and others have done much more.  

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The issue was not the ADOS but that it was not properly administered. It was administered by a student or novice with mom in the room. The ADOS is entirely reliant on the skill/experience/training of the person administering it to NOTICE things and interpret them. The op's ds did things my ds did, and they were stuff the psych administering told us about. We weren't in there. They should be seeing the dc raw, in isolation, as HE responds, not as mom prompts him or interprets. The whole thing was absurd.

So get another person to do it RIGHT. Or sure, find a psych who uses the GARS, ADI-R, or some of the other tools. They're all there. But if the psych wants other people to fill out those forms and you don't have other people to fill them out who are with him enough and seeing the behaviors, where are you? 

To put it in perspective, I struggled to get people who saw my ds enough to fill out forms, so we struggled years to get him diagnosed. I had a (remove nasty nasty words) psych tell me I needed parenting help blah blah. Well now my ds has an ASD2 label and everyone agrees. The psychs now are FLABBERGASTED that the first psych couldn't see it. And it's HOGWASH on saying language is not part of it, because language issues are what bump you from ASD1 to ASD2. So in fact, the REAL thing that psych told you is that his support level is 2. 

But I have a headache and I'm really grouchy today and am being blunt, sorry.

The statistics are that PARENTS are a better judge of autism than psychs, because the parents are with the dc more. Look at the studies, because there's another in the news right now. If you're convinced, odds are you're right. The stats are with you. I know a mom who hauled her kid around for 3 ADOS, one each year, always using hospitals because of her insurance. Well around here the hospitals have students doing the testing. For real. Most important question you'll answer for most of your life, and they have STUDENTS deciding it. Finally the teacher at her school was like hello, this is outrageous. The newly ADOS-trained ps team (multi-factored, not just one person, ALL trained on the ADOS) did the ADOS, and the easily diagnosed him, boom done. So who was right? The student psychs in the hospitals or the ADOS-trained school team who has multi-factored and has worked with thousands of kids??

The whole thing is idiotic. He's probably going to be on the spectrum. He's telling you to use answers that you need because of being on the spectrum. The only thing he's doing is saying he won't give you a label that gets you funding. And without funding, you can't make the interventions happen, which means you need a 2nd opinion. Get a psych referral from the BCBA and go to somebody who does FULL EVALS. Multi-factored evals mean they include a psych and SLP on the team. Language testing at this age is tricky, because he could still pass some tests. The fact that he has issues on the VBMAPP is HUGE and very telling frankly. I'm astonished the guy let it go at that.

Get a 2nd opinion so you get funding for interventions.

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9 minutes ago, Lecka said:

That’s exactly it — he DIDN’T run something that could diagnose it, it sounds like.

He chose not to do things to diagnose it based on his impression that your son is too social.

So he didn’t actually do things to diagnose it.  

Like — he used his clinical judgment not to look further into who-knows-how-many things, based on his impression and initial stuff.

Autism is one of those things.

For experience with VB — if the person seems to have solid experience and training with the VB-MAPP and/or ABLLS, those are both basically VB things.  To some extent working with those are going to imply experience with VB.

A lot of experience will come through training.  

There is a grad level course called “Verbal Behavior” that I know my son’s therapist took, but it was more advanced than day-to-day stuff using VB-MAPP or ABLLS.

A BCaBA may need to be supervised by a BCBA.  I would ask about that I think.  

I do think it’s good to ask about training and experience, some people can seem like they have done the bare minimum and others have done much more.  

He is actually a BCBA. I'm just getting used to all the letters. Lol. He said he has extensive training with the vbmapp and ablls. 

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I'm not done reading your response, but I want to quickly say before I forget again...he sent me home after the first appointment with three separate questionnaires that I mailed in. He said in his final report that those questionnaires actually TESTED POSITIVE (or however he said it) for mild autism!! Yet, bc in five minutes of observation my son was social he determined him to not have autism. 

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Yes I'm getting more upset each day I schedule appointments knowing that insurance won't cover them bc I have no diagnosis. Yet the reason I'm making the appointments is bc HE recommended them for my son--social skills, speech, language!! 

I may call him up and see if he'll reconsider testing again. ?? That will be cheaper than starting over. Or do I  need to cut my losses with him?

 

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I think it would be worth talking to him again.

Maybe say you would like to share more information with him about the autism issue.

Then see what he says, maybe it’s worth going back.  Or maybe not, if he seems like he’s going to stick with the “too social” thing.  

There is so much terminology!  Don’t get me started on the same thing having a different term between ABA and speech therapy.  It is just...... it makes things very confusing some times.  

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2 hours ago, vcoots said:

If he didn’t do the ADOS, what was used to diagnose?

Extensive discussion of what my son was like at home and school, the Connors (but that's ADHD), the Vineland (adaptive behavior), and the GARS. Now, we annotated some tests--like, if we weren't sure what a question meant, we wrote up information on a separate sheet of paper to describe things. I think the GARS has been updated for DSM V, but when we filled it out, it would say things that confused us on the rating. It's been long enough that I'm making this up, but it would ask us to rate a particular behavior as "performs well" to "performs whatever," but it would be a question about tantrums or something. Well, we wouldn't understand whether a lot of tantrums meant that you select a 5 or 1 by the way it was phrased. So, while my terms are made up, we didn't know what they meant on the test because we didn't know if the scoring was using the higher numbers if there was a lot of the problem or a little of the problem. We just took a piece of paper, listed the questions, and then wrote descriptive answers for each question. If it was about tantrums, we described what would cause them, how often they occurred, whatever we could about it. Then the psych bubbled in the number that made sense according to what the test was trying to get at.

My understanding is that the GARS is less confusing now, but it's worth asking about. The Vineland was about life skills sorts of things. 

Eventually he had additional testing that was helpful, like the TOPS and TONL (language tests). The school also ran the Social Development Language Test (I think), which my son did okay on, but not great. He often gave right answers, but not good answers. So, he would indicate on the test that to solve a problem, he would let another child be right...over and over. So, he did have one bad section of the test and a lot of "clearly this child has exactly one way to handle a problem," but he should have so many more ways. 

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2 hours ago, vcoots said:

He is actually a BCBA. I'm just getting used to all the letters. Lol. He said he has extensive training with the vbmapp and ablls. 

PhD Psych??

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2 hours ago, vcoots said:

I may call him up and see if he'll reconsider testing again. ??

I'm confused. It doesn't sound like the guy is a PhD psych. Either way, you need a 2nd opinion. You're not asking the same guy for his opinion. You want a 2nd opinion.

BCBAs are dime a dozen around here, dime a dozen. 

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2 hours ago, vcoots said:

I'm not done reading your response, but I want to quickly say before I forget again...he sent me home after the first appointment with three separate questionnaires that I mailed in. He said in his final report that those questionnaires actually TESTED POSITIVE (or however he said it) for mild autism!! Yet, bc in five minutes of observation my son was social he determined him to not have autism. 

At this point, you could take those results to the ped, talk it through, and get the ped to do a medical diagnosis. This is totally absurd. He had the scores and he has significant deficits. The ped diagnosis might get you insurance coverage at least. 

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16 minutes ago, PeterPan said:

I'm confused. It doesn't sound like the guy is a PhD psych. Either way, you need a 2nd opinion. You're not asking the same guy for his opinion. You want a 2nd opinion.

BCBAs are dime a dozen around here, dime a dozen. 

The behavioral therapist is board certified that came to my house today to discuss ABA. The one that did the evaluation was a psychologist.

14 minutes ago, PeterPan said:

At this point, you could take those results to the ped, talk it through, and get the ped to do a medical diagnosis. This is totally absurd. He had the scores and he has significant deficits. The ped diagnosis might get you insurance coverage at least. 

Wait. The ped can diagnosis autism?! Mind blown. I didn't even talk to the ped bc we never see her and I just thought she'd refer me to a psychologist.

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My son has had the ADOS twice.  With the first one I got a comparison score as a result.  With the second one I got a comparison score and a list of things with points.

So I think if he actually did do the ADOS, then there would at least be a comparison score.  

At least that’s been my experience.

The thing is, I also think if you’re around your child and you are seeing more, then it’s just not something someone can rule out with a brief interaction.

 

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1 minute ago, vcoots said:

Wait. The ped can diagnosis autism?! Mind blown. I didn't even talk to the ped bc we never see her and I just thought she'd refer me to a psychologist.

1

Can, but may opt not to. It's very worth asking!

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My ped would not diagnose autism.

Sometimes people get referrals to a developmental pediatrician.  I honestly have an opinion like there seems to be a lot of saying the child doesn’t have autism and then two years later it’s obvious they do and they get diagnosed then.  But I think this depends so much on where you live.  

BCBAs are definitely not dime-a-dozen where I have lived.  It’s a pretty difficult credential.  I have heard that a long time ago (15 years?) it was easier to get it, they didn’t have to take a test or have a masters degree.... but then they upped their professional requirements as an organization.  

 

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On 6/11/2018 at 2:59 PM, vcoots said:

Wait. The ped can diagnosis autism?! Mind blown. I didn't even talk to the ped bc we never see her and I just thought she'd refer me to a psychologist.

If you decide to go that route I would ask for a referral to a developmental ped. They specialize in developmental disorders. A regular MD does not.

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The ABA therapist told me I should at least ask for a copy of the ADOS screening sheet. To see what he marked off and such. He said he can't believe the evaluation report was barely two pages long. Tomorrow morning I'm going to call and get a copy of the actual test and then make an appointment with my ped to refer me to someone for second opinion.

But for now the therapist is getting back with me for a time to schedule the ablls. Our goal is for him to perform the assessment and then teach me to teach my son in the least amount of visits necessary. At least until someone else is paying! He said the vb-mapp clearly indicates my son has deficits. If it walks like a duck...

Did I mention the CELF results? He scored below average in the subtests word structure, word class, and pragmatics profile. For whatever that's worth. She also noticed and added goals for answering WH questions. We start language therapy Thursday.

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I think that sounds like a great plan!  I hope the language therapy goes well!  I hope you get some good programs to work on from the ABLLS!

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1 hour ago, vcoots said:

The ABA therapist told me I should at least ask for a copy of the ADOS screening sheet. To see what he marked off and such. He said he can't believe the evaluation report was barely two pages long.

What? 2 pages? The one my son's neuropsychologist did was at least 7, if I remember right. VERY long and thorough. 

And your son does NOT sound "too social to be ASD". What a crock. He ignored conversation clues to talk about something he is interested/obsessed with. and played with a car. How on earth you can say he's not autistic from that I have no idea. 

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Just for comparison, the reports from the psychs I've used have always been 12-15 pages MINIMUM, sometimes 20+. And we've been to a lot of psychs. 

You need a proper psych eval. I don't personally understand why you're going forward with interventions before you get it diagnosed. If you want the diagnosis and funding, you may need to wait on intervention and get the diagnosis first.

And yes, a ped can diagnose. The ps will take a ped diagnosis as evidence to begin the IEP process. It's a valid thing. That's not to say he WILL, but he CAN. And my point was to be expedient. If you need insurance funding, then getting that diagnosis would make a lot of sense. Doing intervention that makes it temporarily harder to diagnose does not make sense. You want that eval now, while he's in his raw state. 

We had it happen where interventions we did (when we were being pragmatic, like they aren't helping us so let's just do SOMETHING), moved the bar and made it harder to get him diagnosed with certain things and qualified. It happens. If we were talking ASD3, that wouldn't be on the table. But that's not what we're talking. We're talking a dc, in your case, that is scoring in the ASD1 range on the tools they ran. So how much does he improve until those scores drop just enough and you're screwed? Makes no sense. 

Everything here is about MONEY. Money is what you're going to want in order to make things happen, and you have to have a diagnosis to get access to the funding. To get county services, you need a diagnosis. You want it. 

It took me YEARS to undo what happened by me moving forward without getting everything diagnosed. Years. 

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13 minutes ago, PeterPan said:

Just for comparison, the reports from the psychs I've used have always been 12-15 pages MINIMUM, sometimes 20+. And we've been to a lot of psychs. 

You need a proper psych eval. I don't personally understand why you're going forward with interventions before you get it diagnosed. If you want the diagnosis and funding, you may need to wait on intervention and get the diagnosis first.

And yes, a ped can diagnose. The ps will take a ped diagnosis as evidence to begin the IEP process. It's a valid thing. That's not to say he WILL, but he CAN. And my point was to be expedient. If you need insurance funding, then getting that diagnosis would make a lot of sense. Doing intervention that makes it temporarily harder to diagnose does not make sense. You want that eval now, while he's in his raw state. 

We had it happen where interventions we did (when we were being pragmatic, like they aren't helping us so let's just do SOMETHING), moved the bar and made it harder to get him diagnosed with certain things and qualified. It happens. If we were talking ASD3, that wouldn't be on the table. But that's not what we're talking. We're talking a dc, in your case, that is scoring in the ASD1 range on the tools they ran. So how much does he improve until those scores drop just enough and you're screwed? Makes no sense. 

Everything here is about MONEY. Money is what you're going to want in order to make things happen, and you have to have a diagnosis to get access to the funding. To get county services, you need a diagnosis. You want it. 

It took me YEARS to undo what happened by me moving forward without getting everything diagnosed. Years. 

My insurance doesn't cover ABA therapy, and I hear there's a 10,000 person wait list for the waivers available. And state Medicaid is dependent on household income, so we wouldn't qualify. So I'd rather start now and just pay for it so he can get the help he needs. 

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After reading old posts here and other blogs and such, I was trying to figure out why people always wait years before getting started. I guess wanting the diagnosis before the child starts improving makes sense. I had never really thought about that. 

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Those trained and experienced with autism will see it regardless of how mild. I don't care what people say about not doing therapies till you have a diagnosis!

The only advice I want to give you is to continue with your language therapy plans. Do not hold off on that, waiting for an autism diagnosis!

I wish you all the best,

M

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It all boils down to funding. If you want the funding, you need the diagnosis. So you're going to have to be very pragmatic about getting the diagnosis if you need that for the funding. It's not about not wanting kids to improve. It's that you need the diagnosis to have the funding to make the interventions happen.

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I made an appointment for Thursday with our pediatrician. They said she won't diagnosis, but she'll do her evaluation/screening and then refer me to someone. So, I need to prepare to go into her office with just the right symptoms, stories, and reports for her to take me seriously. Any tips on how to "present my case"? 

Should I just hand this list over:

Developmentally: no waving, babbling, or imitation

Speech: speech sound disorder, didn't speak until he was 2 and a few months

Language: vbmapp showed"deficits requesting help, information using wh questions, and requesting things requiring a yes or no response. Requesting info using wh questions was non existent... Deficits being able to talk and hold a conversation with peers. Didn't not speak to his peers during play or at the table, and when a child would talk to him he would not respond... Deficits listing multiple items in a class, describing locations, and answering questions related to a sequence of events."

Problems with time concepts, always talks loud, chews on his shirts and fingers. Hyperactive

IQ test while in the low-average range  showed an 11-point discrepancy between verbal and nonverbal. 

CELF-5 showed below average scores in word structure, word class, and pragmatics profile. 

Conners early childhood BEH-parent form showed very elevated social functioning and atypical behaviors.

Childhood rating scale-2 indicated "mild autism spectrum disorder", primary concerns in emotional response and relating to people. 

 

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Google for the DSM5 criteria and make a list of each criterion and the symptoms he has in that. There's no need to beat around the bush. Yes, take your report showing the Conners, and CELF scores. 

That IQ was brief and 11 points is not significant.

Yes, make a list of all repetitive behaviors.

Yes, make a list of all sensory-seeking behaviors.

Hyperactivity is separate. It's fine to say, but that's not autism. Now walking away from the group, not staying to watch age-appropriate tv shows, difficulties playing with children, not responding to children, not responding to adults. The not responding is HUGE. That is a huge, huge, huge, huge red flag. If that ain't autism, then you need a hearing eval. Actually, has he had his hearing checked? With language delays and not responding, you want a referral to audiology. Unfortunately, there can be both spectrum *and* audiological issues. I took my ds to an audiologist before his psych eval. Their eyebrows went up when they saw him just totally stop responding. Like he had rapport and then it was just OVER. They had no explanation via ears, so they said I was doing the right thing getting psych evals and building a team. They knew. So he could give you an audiology referral, just to be sure. Always good to be safe there.

Yes, make a list of all oddities with his non-verbals. So issues with pointing, whether he looks for you when he's hurt/scared/lost, that kind of thing. 

If it overwhelms you to use the DSM criteria, then instead categorize them as verbal, non-verbal, and social. Those three areas. Just list everything under them. 

You're on the right track. Most of what you're listing is very important. Don't be bashful. As others who are with him a lot for things they notice. You also want to demonstrate that these behaviors are occurring in multiple settings and are not just related to you or a Sunday School class he doesn't like or something.

I think your ped will have no trouble deciding to refer you. If that helps you get insurance coverage, that's awesome. Make sure you explain straight the guy you went to seemed very irregular, that you want a 2nd opinion. Don't be bashful here. Just a few things off that list (not responding, not pointing, not babbling) would be enough. 

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Have you had an OT eval? List out your dc's sensory issues and get that referral while you're there too. You can get OT without a referral, but I'm saying if you need the referral slip for insurance purposes then get it. If you need a referral for the speech, same gig, get that. 

The ped can also screen for issues that would warrant a PT referral. Have that discussion. That would be more like developmental coordination issues, praxis, etc.

Adding: The DSM criteria include things like rigidities, repetitive behaviors. Ds your ds have things that HAVE to be a certain way? Does he have behaviors if things DON'T go the way he was expecting? Like if you change the route you drive, change the order you do his bedtime routine, or miss a thing he normally does on a particular day, how does he respond? This is very important stuff. Does he have any unusual repetitive overall behavior (humming, untying Mom's shoes EVERY TIME she sits down, etc. etc.) or small repetitive behaviors like things he does with his fingers or hair or...? Remember, repetitive behaviors can rotate, so he might have that behavior as his repetitive behavior for a month or 6 weeks and then move on to a new thing.

What does he do when he is very excited?

What does he do when he is overwhelmed? 

Does he ever seem hard to pull back into your world?

When he plays, does he play with the toy as intended or in unusual ways like only with the parts? Does he have any repetitive use of parts of toys, like flipping a part on a Transformer back and forth, back and forth? Does he watch objects spin?

How does he self-soothe?

Does he have a wide range of interests, or are his interests restricted by topic or maybe connected in some way? So, for instance, my ds seemed to have a lot of interest (Paw Patrol, Star Trek Catan, 3 Musketeers, WW2, etc.), and then we realized he only had one REAL interest: weapons. Weapons were tying everything together. Paw Patrol is weaponized dogs. Star Trek Catan was the ships that shoot. 3 Musketeers was sword fighting. With WW2 it's weapons everywhere (on the ships, the planes, the soldiers). So people thought wide range of interests, but nope, only one. If you wanted him to be interested in something ELSE, you were going to have to chain it back to weapons. 

You're probably seeing these things. It's not cheating to increase your noticing of them. It's just making the process easier. You're with him the most, so you want to go through the DSM criteria and begin SEEING these things so you can express them. I actually had people telling me, when I started, that it was somehow CHEATING if I looked at the DSM. Hogwash. All it did was make it harder to have the right terms and say what I was seeing. I don't naturally notice as much, so I need to up my ability to notice what was happening. I was with him the most, so I HAD to be able to see it, put words to it, and communicate it to them. It's not cheating; it's becoming a more informed, observant, helpful parent. So read the criteria, list them out, and then sit there with paper and watch him all day and start noticing stuff. Really WATCH. 

https://www.autismspeaks.org/what-autism/diagnosis/dsm-5-diagnostic-criteria

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Good luck with the pediatrician appointment!  I think that sounds good.

 

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Good to hear you are getting someone to listen.

Hope all goes well and that you get the needed referrals!

M

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