When is it time to try Barton?

[WoolC]

I've posted before about various issues with my ds 7 with ASD 2 and anxiety. Due to his anxiety/selective mutism no one feels that attempting academic evals would give us any helpful information so I'm kind of fumbling in the dark in regards to which specific learning issues he has.

 

At 5 years old ds could read CVC words, we did progressive phonics up through the intermediate level but he wasn't retaining advanced phonograms or gaining fluency so I started him in LOE foundations B. He completed it along with 75% of level C but the lessons were dragging out incredibly long and he was still struggling to decode each word repeatedly. We took a break to just practice phonograms daily using RLTL along with going slowly through the spelling lists and reading Nora Gaydos readers. He can read level one and two fluently. He struggles with level 3 and 4, lots of guessing and halting, slow reading. He will sometimes plop an "r" or "l" into a word when there is none. He's recently started confusing vowel sounds in even simple CVC words, or this could just be from guessing as opposed to confusing. He's great at rhyming, counting syllables, phonemic awareness exercises.

 

Is it ok to just keep going at his pace through the short little readers, building each level up to fluency or would all of this indicate that it is time to go to a program like Barton? I've also considered adding in AAS to run back through all of the phonics and shore up rules along with continuing to build up fluency with the readers he likes.

 

Thanks for any help you can give!

[PeterPan]

ASD2 implies significant language issues. Has he had language testing? For my ds (high end of ASD1, bordering on ASD2), his reading jumps with language work and decreases with language regression. You would want the CELF, CASL, or something more autism-specific like the ABLLS to look at that. 

 

No, you haven't described a good reason to spend $$$ for Barton. He's probably disengaged due to language issues, meaning he's not motivated. He may also have retained reflexes and/or developmental vision problems. My ds' eyes were jumping at the midline because of the retained reflexes. We've worked through them and now we're beginning some more vision-specific work. He probably also could stand to work on rapid naming and processing. The PT had a kicked up version of the rapid naming pages we've been doing. I need to get it started. Instead of colored dots OR arrows, it was colored arrows. Then you read the one while letting the other feature be a distraction. So you try to do that first straight, then as it's easier adding in distractions (movement, metronome, etc.).

 

Are you getting services or doing anything for language? I don't have experience with selective mutism.

[WoolC]

The psych that diagnosed ASD etc said that testing would be useless for us because he refuses to speak/perform in front of an evaluator whatsoever, though at home you would never guess that. He has an amazing vocabulary and no noticeable language issues when he is in comfortable surroundings.

 

He sees a development optometrist every 6 months so we have ruled out vision issues. I actually did some rapid naming drills with him over the weekend from your Dropbox files after seeing them in another Barton thread and he had no issues with them.

 

We worked with an MNRI specialist last year on some retained reflexes but unfortunately had to stop due to finances. I know someone posted a link with exercises for reflexes awhile back but I've been unable to find it. If anyone has a good resource for working on those at home I'd appreciate it. No services currently because the specialists we have seen all agree that my son's issues are rooted in anxiety and sensory. We've been using the Asperger's Experts approach at home and he's making a lot of progress with that but formal therapies send him right back into mutism. Trying to figure out the academic component without insight from formal evaluations is tough!

[WoolC]

Wanted to add that I feel we are getting bogged down with open/closed syllables and two vowel phonograms.

 

Also, the sheer amount of text on a page can cause him to shut down completely.

 

I just don't want to keep plugging away for years and regret not getting help sooner if something like Barton could help make reading easier for him. On the other hand, if Barton won't help the specific issues he is having I'd much rather save the money and keep working diligently in small increments each day.

[Guest]

WoolC, I have never used Barton but was just thinking, perhaps you can contact Susan Barton, explain the situation, and see what she has to say. She would be the best person to tell you if Barton is suitable in your boy's case. 

 

I hope you find the best solution for your boy  :grouphug:

[zarabellesmom]

No advice, but hugs. Selective mutism makes it really hard to get the other stuff sorted out. Best of luck to you.

[WoolC]

WoolC, I have never used Barton but was just thinking, perhaps you can contact Susan Barton, explain the situation, and see what she has to say. She would be the best person to tell you if Barton is suitable in your boy's case.

 

I hope you find the best solution for your boy :grouphug:

No advice, but hugs. Selective mutism makes it really hard to get the other stuff sorted out. Best of luck to you.

Thank you, I think I will contact Susan. In the meantime, I pulled Dancing Bears off the shelf today. I had purchased it a couple of years ago but ended up using other things. It is supposed to help slow readers with fluency so we will try it for the next month and see what happens before I bite the bullet on another program. Edited April 10, 2017 by WoolC

[PeterPan]

I wouldn't do any forced reading. You have no evidence of a reading disability, which means it's the language disability and the autism. Personally, I would use audiobooks, create a print-rich environment where it's to his advantage to read text to gain access to things he wants (comic books, apps, iTunes, dvd covers, etc.), and drop forced reading entirely. 

 

I would focus on the bonding, lowering his anxiety, and increasing communication and language. I think the reading will come later. It just isn't the thing to worry about right now. If it's increasing anxiety and isn't a disability for him (which it's clearly not), then it's not the time. 

 

My ds has this contrast. As of last summer he technically could read at a 6th grade level. That's as a dyslexic dc finishing 1st grade. However he largely refuses to read, mainly because of his language skills. When we work on language, he reads more, and when we stop working on language he regresses and pulls back from reading. Reading requires language.

 

So that's why I'm saying I would work on the anxiety and the language and drop forced work that requires him to read aloud. If he's in a print-rich environment and can read and wants to read, he will. He doesn't have dyslexia. I would not force it. If you are aggressive with audiobooks, like 1-3 hours a day, really diligent, he will have the vocabulary and pieces in place (memorized language), so that when it comes together he'll jump. I just would not force it before then.

 

Do you have an SLP who is an expert on mutism? Do you have strategies for the anxiety? I would focus on your pairing and do positive things that decrease anxiety, increase interaction, increase communication. I would not force the reading at all. I would just literally put it aside. Even till age 10 would not be unreasonable.

[PeterPan]

But you know, hey, don't listen to me. I just try to sprinkle pixie dust sometimes, kwim? I'm not an expert. But if you want to know Barton's opinion, you could call her or email her. I can tell you she's NOT a fan of forced reading. It sounds really counter-intuitive, because you think oh disability must force. I'm telling you BARTON told me to chill and respect the language issues and the timing of the child.

 

So I say with known language issues and no evidence of SLD (that awesome RAN/RAS seals the deal in my mind, not SLD Reading), I would chill, respect the language and development, focus on pairing, focus on language, keep it positive, let it come over time.

 

But you could call Barton, sure. She's awesome. :)

Edited April 11, 2017 by OhElizabeth

[OneStepAtATime]

Agree call Susan Barton. She will give you her honest opinion.

 

FWIW, I'm a big fan of Barton's system but with what you describe I agree that it may not be what your child needs. Hopefully you can get some answers before shelling out that kind of money.

 

Best wishes.

[WoolC]

I wouldn't do any forced reading. You have no evidence of a reading disability, which means it's the language disability and the autism. Personally, I would use audiobooks, create a print-rich environment where it's to his advantage to read text to gain access to things he wants (comic books, apps, iTunes, dvd covers, etc.), and drop forced reading entirely.

 

I would focus on the bonding, lowering his anxiety, and increasing communication and language. I think the reading will come later. It just isn't the thing to worry about right now. If it's increasing anxiety and isn't a disability for him (which it's clearly not), then it's not the time.

 

My ds has this contrast. As of last summer he technically could read at a 6th grade level. That's as a dyslexic dc finishing 1st grade. However he largely refuses to read, mainly because of his language skills. When we work on language, he reads more, and when we stop working on language he regresses and pulls back from reading. Reading requires language.

 

So that's why I'm saying I would work on the anxiety and the language and drop forced work that requires him to read aloud. If he's in a print-rich environment and can read and wants to read, he will. He doesn't have dyslexia. I would not force it. If you are aggressive with audiobooks, like 1-3 hours a day, really diligent, he will have the vocabulary and pieces in place (memorized language), so that when it comes together he'll jump. I just would not force it before then.

 

Do you have an SLP who is an expert on mutism? Do you have strategies for the anxiety? I would focus on your pairing and do positive things that decrease anxiety, increase interaction, increase communication. I would not force the reading at all. I would just literally put it aside. Even till age 10 would not be unreasonable.

Thanks for responding! Just to clarify, when you say that we have no evidence of a reading disability is that based on what I'm saying he's capable of or because we don't have a formal diagnosis? Asking because when I have read checklists for dyslexia/stealth dyslexia I'm seeing lots of those things in my son. Inserting random letters into a word, sometimes reading a word backwards, letter and number reversals are frequent in his writing, fatigue from very little reading, etc. My 6 year old who just began phonics this fall has blown past my 7 year old in reading. 7 year old will be 8 in a couple of months, closing in on 3 full years of phonics instructions.

 

When you say working on language what would that consist of? He is literally indistinguishable from a NT child in his language abilities at home. We talk all day, he loves jokes and riddles, plays imaginatively with his brother for hours, board games, etc. When we are at home I would say his anxiety is quite low, that part of the picture is only coming in when we attend church, appointments, outside activities. We've seen a neurologist, psychologist, and psychiatrist, none of whom have suggested any language related therapies or skills to work on...they're all there, he just doesn't use them in certain situations.

 

Concerning school activities, I heavily tweak our math program for him to reduce anxiety. He loves to listen to read alouds, map work, mystery science. I know from working with him that we're dealing with very low working memory and slow processing. It takes a ton of repetition for him to remember math facts, phonograms, etc. Anxiety comes into play if I ask for any kind of narration so I have completely stopped asking for that over the past year. I would not say I'm forcing reading. We go through phonograms most days and I require a short reader, like level 2 Nora Gaydos, don't know if you have seen those but they are the length of maybe Bob Books, not like a level 2 early reader in general. It takes less than 5 minutes. He's happy to read those, it's only when we try to increase the length or material of reading at all that he struggles...and I drop it at that point. That's why I was asking is it ok to just keep on with the five minutes a day of these very simple readers, or would the fact that we can't seem to move past them indicate a problem that needs to be remediated? I was thinking that from reading so many threads saying if a child COULD read they would. I especially think this since I have bought some level one step into reading books like marvel superheroes and Star Wars that my son WANTS to read but it takes FOREVER, he tires out and gets frustrated. So it's not really looking like a motivation or anxiety problem, kwim?

 

I hope all this is making sense, I feel like I'm all over the place trying to explain the situation. Happy to clarify whatever is needed. Maybe a better question to ask would be what kind of red flags would I look for to indicate that something like Barton would help?

[WoolC]

I think maybe the confusion is coming in because of the ASD diagnosis. If it matters, each person we've seen has said they would call it aspergers if that label was available and one therapist we worked with said she would only call it SPD, anxiety and mutism, she doubted ASD altogether. When we got the ASD diagnosis it wasn't due to any issues in language but in rigidness and repetitive behaviors, etc. Knowing that, should I still assume inability to read is part of autism versus stealth dyslexia?

 

I know it's hard to get a clear idea from reading in a message board, just trying to get my thoughts together so that when I do contact Susan I will have a better understanding of what info is helpful to know.

[Guest]

I know it's hard to get a clear idea from reading in a message board, just trying to get my thoughts together so that when I do contact Susan I will have a better understanding of what info is helpful to know.

WoolC, we are not dealing with dyslexia so I don't have anything useful to add to the discussion. I just wanted to suggest putting what you want to say in an email instead of a phone call. It helps me to write things down, even if you use it as notes for a phone call.

 

I hope you find something that works!

[PeterPan]

Yes, if he *could* read he *would* absolutely! But that doesn't mean DECODING is the only piece. It's decoding plus language plus attention plus developmental readiness plus engagement with the materials plus vision plus...

 

Has the psych or an SLP run the CELF or CASL or any detailed language testing on him? That would be *unusual* to say ASD2 and not have any effect on language. Did you diagnose the selective mutism yourself or have a full SLP eval? And has he been willing to work with that person enough to do any language testing?

 

The language testing would let you see where the gaps are. You're saying he's fine at the single word and single sentence level and struggles at the paragraph level. That can reflect issues with comprehension at the paragraph level. You don't *expect* it with some kids because they can have really high vocabulary, etc.! So you'll see these unexpected difficulties that show up in language testing, and you might not really be able to tell it on your own.

 

It would be interesting if you could get enough support that he *could* do some detailed language testing. Right now you're assuming the reason for the fall apart is decoding. You're calling it fatigue. Maybe, dunno. Autism just brings in a lot more variables, things that could be explaining it. The language testing (CELF, CASL, etc.) will be standardized and eliminate the reading component, so they can say yes in a standardized way, compared to his peers, this is where his single sentence or paragraph level comprehension or ability to follow directions or... is at. It would let you discriminate whether it's the decoding or the language that is the issue or maybe something else entirely.

 

Has he actually had a CTOPP? I think I'm taking things you're saying too literally. You're saying he "does great" on phonological processing, RAN/RAS, etc., etc., but maybe some data would help you sort that out. You might see if you could get a really low kit situation with maybe an autism-friendly reading tutor and get them to run the CTOPP. If the psych couldn't do it due to non-participation, then maybe look for someone else who can. That's the elephant in the room, and right now you don't have data to help you decide.

 

The other thing you could do is ask Barton to send you the placement tests for Barton and see what happens. If his phonological processing is intact, he will probably be fine through some of the beginning levels. In the absence of being able to get him to participate with anyone else to do actual TESTING and give you standardized data, it would be a way to get something.

 

Your younger has autism also or no? You're saying your older is not like him, but think through the irony of that. I take it you're saying you've seen what your family's IQ SHOULD function like and learn like, and there's a striking difference between how that IQ with ASD and developmental delays functions vs. without. Very true. And I think you could find that comparing him won't get you anywhere. All the pieces have to come together for the dc. I've heard this story way too much (intact or fully remediated phonological processing, super high IQ, STILL not reading till age 10) to go oh well it's a curriculum deficiency. You have a diagnosis that involves significant language and developmental issues. Why no language testing with 3 evals and selective mutism? No participation? You've been to an SLP? My ds has had tons of speech therapy for his apraxia. I totally get skepticism about SLPs or going no for this diagnosis their methodology actually backfires. But sometimes you can drive farther, keep looking, and you find someone with really strong ABA skills who CAN get him to participate who DOES get his issues. Then maybe you could get some data to sort this out.

 

There are nonverbal IQ tests. There may be ways to do achievement testing non-verbally. I need to think about the CTOPP. If you have compliance, just no speech (says the woman whose kid has apraxia), I'm thinking you can still work around this and get some scores and data. It's just going to take some creativity and time. I would want motivators, pairing, slowing it down till he's comfortable enough to RESPOND and a tester who has enough huzzpah that they'll be creative and get it to work. There are lots of ways to indicate a response and get your thoughts out while totally non-verbal. It's not like this is an unknown issue.

 

My dd was an exceptionally advanced reader, and my ds, with a somewhat higher IQ, basically never reads anything except sentences and contextualized life print right now. He CAN in theory, but with his language drop (relative to his peers) this year, he does not have the paragraph level comprehension to sustain that kind of reading. Even if he could, like even if I FORCED it (like the ABA tutor wanted me to) and said BY GUM YOU'RE GONNA READ NOW CUZ I KNOW WE CAN GET THIS TO HAPPEN, what would it have accomplished?? The forced reading that the ABA worker made him do, well below his data-established "reading" level, only served to make him begin saying he hated reading, NOT to make it any better. He has a delay of "not more than two years" as our team politely puts it, and he has known language issues. When all the factors come together and our interventions are effective, he begins reading on his own, without trauma. When the things aren't there, he pulls back. When he can, he will.

 

In the meantime, I work at the word and sentence level with him, make sure his RAN/RAS is awesome, make sure his working memory is awesome, and give him hours a day of intriguing, well-written audiobooks. All the pieces are there for it to come together. 

 

And, fwiw, some of those errors are possibly working memory. 

 

I like data with my ds, because it helps me sort out very complex issues and go ok we found the hole, this is the hole, not this other thing I thought was the hole. So if you can find a way to get him paired and comfortable with someone who can get you data, that would give you helpful info. I would be wanting the CTOPP and either the CELF or CASL. In the absence of those, like if you really really can't get those to work out in the next few months, despite researching, finding someone experienced with autism, finding someone with experience with non-verbal kids, etc., then I would go to your back-up plans for how to get data (Barton placement tests, etc.). 

 

Even if he has SLD Reading, so what? You have a pile of things going on. At least that's how I feel. My ds' SLD Reading is just so the bottom of my worries. That is fixable with tech, boom. He's of a generation where he'll always have tech, and I've raised him that using tech is just as good and normal. We ear read, we eye read, boom. Dictation tech, normal. All normal. But I can't use tech to solve the other problems of autism. So that's why I'm kind of chilled about it, because we have so many other things that are also important, maybe more important, that we are working on.

 

Think about it. Even if he started reading now, you REALLY think he's ready to read to learn? I mean, other than making yourself feel comfortable like ok I did an ok job, my child will be ok, etc., what is the point of his reading? Something is clearly glitchy. The likelihood of him reading to learn soon is nill. If he's dyslexic, it will be years. If he has language delays, it will be years. So no matter what, you're going to substitute, bring in ear reading, increase access, move on. Either way, no matter which answer, you're going to move on. 

[PeterPan]

Diagnoses like stealth dyslexia are disputed. The Eides, for instance, have a much broader definition of dyslexia than the DSM. In general, SLD Reading is phonological processing. You expect to see phonological processing issues and you typically will see a low RAN/RAS. All the other profile junk you read online is rabbit trails. Yes, I'm exceptionally b&w. It's just we constantly have people deciding diagnoses on things they read online that have NOTHING TO DO with the criteria for the diagnosis. They're just profiles, and our kids will fit lots of those profiles.

 

 

I think maybe the confusion is coming in because of the ASD diagnosis. If it matters, each person we've seen has said they would call it aspergers if that label was available and one therapist we worked with said she would only call it SPD, anxiety and mutism, she doubted ASD altogether. When we got the ASD diagnosis it wasn't due to any issues in language but in rigidness and repetitive behaviors, etc. Knowing that, should I still assume inability to read is part of autism versus stealth dyslexia?

I know it's hard to get a clear idea from reading in a message board, just trying to get my thoughts together so that when I do contact Susan I will have a better understanding of what info is helpful to know.

 

 

That's hard when you have disputed diagnoses. We had this happen, with different psychs saying different things. It's why we've brought more people onto our team, to get more people spending time with him to get more clear conclusions. I really think it's tricky when someone sees a person for one hour and goes boom I know. Even a few hours. Some super bright kids respond really well to novelty. My ds did things in the psychs office (playing with a kid) that I had NEVER seen him do before, ever. But he had never had a chance to play with another kid with autism! The two both liked the same things (fighter planes) and were both playing in the same way (looking at the parts). It was this astonishing moment for me, like wow put him with a kid with autism and suddenly he has a friend! The psych meanwhile is like what are you whining about, he plays with kids fine. And people wonder why I have less than nice words for practitioners.

 

You've got a big spread there. You're saying ASD2, which is a really serious thing, but you're saying another person was like oh maybe not at all. That's a pretty big spread. My ds is considered high end of ASD1. Like on the ADOS, if they want to use the ADOS to decide the level, they divide up scores into ranges. Same with Vineland, GARS, etc. My ds has GARS level 3 behaviors in some areas, level 1 in others. For him it averages out to high end of level 1, kissing right on the line with ASD2. He's just this mix, but it really depends on what they're looking at to decide that level.

 

We had our diagnosis a full year before we had enough people coming in to make peace with it. There were things that were happening that I wasn't seeing. It might take some work for you to get him paired and interacting enough that some of this becomes more apparent. Are you pursuing any in-home help? 

 

Just as a total aside (and not to preach or anything, sorry, lol), working on retained reflexes has been ASTONISHING for my ds. We have gotten language spurts I never dreamed of, like beautiful sentences of original speech now. It just got connections going in the brain. And he's so much more calm and self-regulated. This morning he slipped and fell on some water, and he actually did a guided mindfulness activity with me and calmed down! Do you realize how astonishing this is?

 

So it might be some body work, working on social, working on pairing, working on OTHER areas would kind of back door this, get other things going, and let it become obvious over time. For us the PT and behaviorist (BCBA is the certification) have been awesome. The PT was the first person I found who was really, really knowledgeable about reflexes finally. If you found a BCBA who was really experienced with the mutism, it might be really intriguing to see how they would approach him. For me, it really helps to have more eyes, more help, more perspective. Usually what happens is they come in and they see potential to move forward I didn't see. 

 

Edited April 11, 2017 by OhElizabeth

[WoolC]

Yes, if he *could* read he *would* absolutely! But that doesn't mean DECODING is the only piece. It's decoding plus language plus attention plus developmental readiness plus engagement with the materials plus vision plus...

 

Has the psych or an SLP run the CELF or CASL or any detailed language testing on him? That would be *unusual* to say ASD2 and not have any effect on language. Did you diagnose the selective mutism yourself or have a full SLP eval? And has he been willing to work with that person enough to do any language testing?  ​He's had no detailed language testing, psych said it wouldn't be accurate because of non cooperation.  Psychiatrist diagnosed selective mutism.

 

The language testing would let you see where the gaps are. You're saying he's fine at the single word and single sentence level and struggles at the paragraph level. That can reflect issues with comprehension at the paragraph level. You don't *expect* it with some kids because they can have really high vocabulary, etc.! So you'll see these unexpected difficulties that show up in language testing, and you might not really be able to tell it on your own.

 

It would be interesting if you could get enough support that he *could* do some detailed language testing. Right now you're assuming the reason for the fall apart is decoding. You're calling it fatigue. Maybe, dunno. Autism just brings in a lot more variables, things that could be explaining it. The language testing (CELF, CASL, etc.) will be standardized and eliminate the reading component, so they can say yes in a standardized way, compared to his peers, this is where his single sentence or paragraph level comprehension or ability to follow directions or... is at. It would let you discriminate whether it's the decoding or the language that is the issue or maybe something else entirely.

 

Has he actually had a CTOPP? I think I'm taking things you're saying too literally. You're saying he "does great" on phonological processing, RAN/RAS, etc., etc., but maybe some data would help you sort that out. You might see if you could get a really low kit situation with maybe an autism-friendly reading tutor and get them to run the CTOPP. If the psych couldn't do it due to non-participation, then maybe look for someone else who can. That's the elephant in the room, and right now you don't have data to help you decide.

 

​I see what you are saying about why the testing would be really helpful in untangling the various issues and that I most likely can't decipher it without the tests.  The problem we're running into is that we can work with a therapist for months without ds speaking to (or even in front of) the therapist AND when we have done therapy in the past it has increased his behaviors related to anxiety making home life more difficult as well.  He's resistant to non verbal answers in therapy scenarios as well.  I'm sure the answer to this is to find the right therapist, we're currently on another waitlist, but finances are limited and so being able to accomplish testing with an SLP or psych would still be months or even years down the road.  Trying to decide the best use of our time in the meantime is what I'm struggling with.

 

The other thing you could do is ask Barton to send you the placement tests for Barton and see what happens. If his phonological processing is intact, he will probably be fine through some of the beginning levels. In the absence of being able to get him to participate with anyone else to do actual TESTING and give you standardized data, it would be a way to get something.  ​This is why I was thinking Barton...could be ASD/out of our hands but could possibly be phonological so why not work on it if possible.  I'll see what Susan says.  We did do 10 minutes of Dancing Bears this morning and it went well so we may just continue with that.

 

Your younger has autism also or no? You're saying your older is not like him, but think through the irony of that. I take it you're saying you've seen what your family's IQ SHOULD function like and learn like, and there's a striking difference between how that IQ with ASD and developmental delays functions vs. without. Very true. And I think you could find that comparing him won't get you anywhere. All the pieces have to come together for the dc. I've heard this story way too much (intact or fully remediated phonological processing, super high IQ, STILL not reading till age 10) to go oh well it's a curriculum deficiency. You have a diagnosis that involves significant language and developmental issues. Why no language testing with 3 evals and selective mutism? No participation? You've been to an SLP? My ds has had tons of speech therapy for his apraxia. I totally get skepticism about SLPs or going no for this diagnosis their methodology actually backfires. But sometimes you can drive farther, keep looking, and you find someone with really strong ABA skills who CAN get him to participate who DOES get his issues. Then maybe you could get some data to sort this out.

​

Younger is NT.  I definitely don't expect him to be able function like his brother.  Just surprising to see how EASY academics have been for his younger brother and felt like if I could make learning easier for him I should.  I just don't want to watch him struggle and assume it's the ASD if there is anything I could be doing to make it click easier for him.  And yes, no testing because of no participation/cooperation in those settings, like at all.

 

There are nonverbal IQ tests. There may be ways to do achievement testing non-verbally. I need to think about the CTOPP. If you have compliance, just no speech (says the woman whose kid has apraxia), I'm thinking you can still work around this and get some scores and data. It's just going to take some creativity and time. I would want motivators, pairing, slowing it down till he's comfortable enough to RESPOND and a tester who has enough huzzpah that they'll be creative and get it to work. There are lots of ways to indicate a response and get your thoughts out while totally non-verbal. It's not like this is an unknown issue.

​This may be possible when his anxiety is under better control.  Currently on the waitlist to see another neuro to address anxiety.

 

My dd was an exceptionally advanced reader, and my ds, with a somewhat higher IQ, basically never reads anything except sentences and contextualized life print right now. He CAN in theory, but with his language drop (relative to his peers) this year, he does not have the paragraph level comprehension to sustain that kind of reading. Even if he could, like even if I FORCED it (like the ABA tutor wanted me to) and said BY GUM YOU'RE GONNA READ NOW CUZ I KNOW WE CAN GET THIS TO HAPPEN, what would it have accomplished?? The forced reading that the ABA worker made him do, well below his data-established "reading" level, only served to make him begin saying he hated reading, NOT to make it any better. He has a delay of "not more than two years" as our team politely puts it, and he has known language issues. When all the factors come together and our interventions are effective, he begins reading on his own, without trauma. When the things aren't there, he pulls back. When he can, he will.

 

In the meantime, I work at the word and sentence level with him, make sure his RAN/RAS is awesome, make sure his working memory is awesome, and give him hours a day of intriguing, well-written audiobooks. All the pieces are there for it to come together. 

 

And, fwiw, some of those errors are possibly working memory. â€‹I definitely think this is a component.  We are addressing memory through games for now.

 

I like data with my ds, because it helps me sort out very complex issues and go ok we found the hole, this is the hole, not this other thing I thought was the hole. So if you can find a way to get him paired and comfortable with someone who can get you data, that would give you helpful info. I would be wanting the CTOPP and either the CELF or CASL. In the absence of those, like if you really really can't get those to work out in the next few months, despite researching, finding someone experienced with autism, finding someone with experience with non-verbal kids, etc., then I would go to your back-up plans for how to get data (Barton placement tests, etc.). 

 

Even if he has SLD Reading, so what? You have a pile of things going on. At least that's how I feel. My ds' SLD Reading is just so the bottom of my worries. That is fixable with tech, boom. He's of a generation where he'll always have tech, and I've raised him that using tech is just as good and normal. We ear read, we eye read, boom. Dictation tech, normal. All normal. But I can't use tech to solve the other problems of autism. So that's why I'm kind of chilled about it, because we have so many other things that are also important, maybe more important, that we are working on.

 

Think about it. Even if he started reading now, you REALLY think he's ready to read to learn? I mean, other than making yourself feel comfortable like ok I did an ok job, my child will be ok, etc., what is the point of his reading? Something is clearly glitchy. The likelihood of him reading to learn soon is nill. If he's dyslexic, it will be years. If he has language delays, it will be years. So no matter what, you're going to substitute, bring in ear reading, increase access, move on. Either way, no matter which answer, you're going to move on. 

 

​Thanks for this perspective on it.  I'm really in no rush for ds to read to learn.  I plan to read aloud content subjects for a long time to come.  We're definitely a literature rich home and use audiobooks and such.  Yesterday I was having a bit of a panic so thanks for helping me to take a step back and say "so what" if this one component doesn't come together like I would hope.  You're right, I was wanting to feel like I'm accomplishing something and that the reading was going to be ok.

 

[Guest]

WoolC, have you looked at any resources for the anxiety? You could look at mindfulness and CBT. These are things you can work on with your boy yourself. There are some parent friendly resources out there and it may help while you wait on the waiting lists.  :grouphug:

Edited August 17, 2017 by Guest

[PeterPan]

The CTOPP is crazy easy to implement. If you found a tutor, someone with it who would let you take it home and administer it, that could work. If he's willing to work for you but not someone else, then maybe pursue that. Like if the reading tutor has it and they step out of the room and y'all do it together, maybe that could work?

 

Barton I think helps her certified tutors get the CTOPP. So a Barton tutor in your area might have it.

[PeterPan]

How does he do if a worker comes to your house? Usually behaviorists and ABA people will start with pairing. Does he allow people to come work with him on his own turf?

[WoolC]

WoolC, have you looked at any resources for the anxiety? You could look at mindfulness and CBT. These are things you can work on with your boy yourself. There are some parent friendly resources out there and it may help while you wait on the waiting lists. We are on a waiting list for evals too :grouphug:

Yes, we are members of Asperger's Experts and have done their course on Getting out of Defense Mode which targets sensory issues and anxiety. We've seen huge improvements at home and just in the past year he has started attending Awana's (he doesn't recite the verses) and Children's church without us, which was impossible before AE. We're making gains, just very slow.

 

I have a few CBT books for kids and for parents that we've gone through, but AE says that for people on the spectrum the anxiety is stemming from emotional and sensory issues rather than the behavioral issues that CBT is awesome at addressing. My son hasn't applied much of what we read from the What to do When You Worry Too Much book we did.

 

I'll have to check into more mindfulness resources. We tried one that he found kind of silly so it was difficult to get him to try it. We could do more there. Thanks for your suggestions!

[WoolC]

The CTOPP is crazy easy to implement. If you found a tutor, someone with it who would let you take it home and administer it, that could work. If he's willing to work for you but not someone else, then maybe pursue that. Like if the reading tutor has it and they step out of the room and y'all do it together, maybe that could work?

 

Barton I think helps her certified tutors get the CTOPP. So a Barton tutor in your area might have it.

I will definitely follow up on this, this might work perfectly. Thanks!

[WoolC]

How does he do if a worker comes to your house? Usually behaviorists and ABA people will start with pairing. Does he allow people to come work with him on his own turf?

We haven't tried it, but judging on his reactions to when any unfamiliar person comes into our home I don't know that it would go much better. For now, I don't think we will be perusing behvioral therapy. It hasn't been recommended for my son by any of the evaluators we have seen and my son's mutism can be traced back to OT with a therapist that took a behavioral approach at 4 years old (he was there for SPD). I know it can make a big difference for some kids but it's not the best fit for our family right now. I'm hoping the neurologist can give us some help on the anxiety and like you said maybe a PT for the reflexes might be a way forward. He did work one on one with a gymnastics coach last year (though he never spoke to him either) so physical cooperation seems to be a bit easier for him than verbal.

[PeterPan]

You can google the reflexes and do the work with him yourself.

[chiguirre]

Thank you, I think I will contact Susan. In the meantime, I pulled Dancing Bears off the shelf today. I had purchased it a couple of years ago but ended up using other things. It is supposed to help slow readers with fluency so we will try it for the next month and see what happens before I bite the bullet on another program.

 

 

WoolC, I've used Apples and Pears with Geezle (ASD1 but also dxed with MR) for the last four years and it's help tremendously with his spelling (and reading although he already was reading when we started). I'd definitely give Dancing Bears a good try. If you don't see any progress by mid-summer then I'd look at Barton.

[Guest]

Yes, we are members of Asperger's Experts and have done their course on Getting out of Defense Mode which targets sensory issues and anxiety. We've seen huge improvements at home and just in the past year he has started attending Awana's (he doesn't recite the verses) and Children's church without us, which was impossible before AE. We're making gains, just very slow.

This is good to hear! Any gains are good, no matter how slow.

 

I have a few CBT books for kids and for parents that we've gone through, but AE says that for people on the spectrum the anxiety is stemming from emotional and sensory issues rather than the behavioral issues that CBT is awesome at addressing. My son hasn't applied much of what we read from the What to do When You Worry Too Much book we did.

The sensory stuff is tricky! We have done slow exposure with my 8 yr old. The process of desensitization as Temple Grandin describes it in her books and website. It's pretty simple to implement. I'm wondering if that is what the Asperger's Experts are doing also! It's been a long time since I checked their site. It's one form of CBT as well. It's slow gradual exposure where the person has control over the situation. It enables the person to see that they can be in a situation and be OK. It can help in some situations. It has helped both my two in different ways.

 

For CBT resources, I have found the general strategies more useful to me in coaching my two. The workbooks have not been very useful to us either, so far. I just ordered Attwood's *Exploring Feelings*, the one for Anxiety. I'm waiting for it to arrive. I got it from Bookdep so it's going to take a while. I'll let you know what I think. I also bought * Overcoming Anxiety in Children and Teens* by Dr. Jed Baker but haven't had the chance to start reading it yet. Juggling too many things!

 

I'll have to check into more mindfulness resources. We tried one that he found kind of silly so it was difficult to get him to try it. We could do more there. Thanks for your suggestions!

Again, with mindfulness, I go for the general strategies, which I have tried to apply to myself first. Yes, some books are not my thing either, which is why I try to check them out from the library first or look at preview pages. I returned one on Kindle the other day that was not what I was looking for. Check out *Mindful Games* from Susan Kaiser Greenland. I got that on Kindle and that one met my needs more. I want to start implementing that, soon.

 

You will be in my thoughts,

 

Marie

Edited April 12, 2017 by Guest

[Guest]

WoolC, I just saw your post about the OT. I'm so sorry! :grouphug: Some kids are just not suited to that form of therapy. We worked really hard with my 8 yr old to get to where we are today in communication. Both his dad and I spent time on the floor with him following his lead and just challenging his thinking with our questions. He has sensory issues and it comes out as anxiety. I would be devastated if that happened here! I suffer from anxiety myself and I know that my two would not be suited to that form of therapy. So sorry your boy had to go through that :(

[Guest]

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[Guest]

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[WoolC]

WoolC, a short while ago I had linked information on this study:

 

Environmental Enrichment as a Therapy for Autism: A Clinical Trial Replication and Extension

 

Here's the thread:

http://forums.welltrainedmind.com/topic/641912-exposing-children-with-autism-to-new-experiences-ameliorates-symptoms/

 

This is an article I found on Scientific American by one of the researchers involved in the study (Michael Leon):

https://www.scientificamerican.com/article/environmental-enrichment-may-help-treat-autism-and-help-us-all/

 

If you scan through the thread you will see that I found mention of it in one of Temple Grandin's books. In the article linked above, Michael Leon links to a website that was started by one of the parents whose daughter has gone through the therapy and was involved in the study. The therapy can be done at home with very simple materials. However, the parent that has started that website is asking for quite a bit for online access to the therapy.

 

Anyhow, I am trying to see if I can find (perhaps even buy, Temple Grandin says it should cost around $30) the particulars of the therapy to implement myself. I'll let you know if I find anything, if you are interested, of course :) Failing to gain access to it, I will just try to come up with my own. Sensory issues run in my family and I have them, myself. It is an angle I am definitely looking to pursue. I am hoping to get OT for sensory integration for both boys after the evaluations but we shall see. I am looking at OTs with DIR/ Floortime certification from ICDL.

 

Anyway, thought I would share.

Thanks Canadian Mom! This looks like something that might work really well for my son. Do keep us posted if you are able to implement something similar on your own.

[Lecka]

I agree with contacting Susan Barton.

 

But really I want to be nosy! My son was diagnosed about a year before the new ASD diagnosis with levels 1,2,3 and I have not really found any good information about it.

 

Do you know any more about it, or do you know any particular reason your son was diagnosed ASD 2?

 

We are probably going for a re-evaluation later this year, so I will see what they say then, but I really am curious if you know anything about it.

[WoolC]

I agree with contacting Susan Barton.

 

But really I want to be nosy! My son was diagnosed about a year before the new ASD diagnosis with levels 1,2,3 and I have not really found any good information about it.

 

Do you know any more about it, or do you know any particular reason your son was diagnosed ASD 2?

 

We are probably going for a re-evaluation later this year, so I will see what they say then, but I really am curious if you know anything about it.

We got our diagnosis when the new labels were fairly new and I got the impression that the psychologists were still kind of hashing out how to classify each case. The way the psych explained it to us the levels were meant to show the level of support a child needed. So a 2 didn't necessarily mean that our son was at a particular level in regards to language or functioning but that he required a moderate level of support. In our case in particular, our son requires little support at home but heavy support out of our home, so that kind of averaged out to a 2. I think that you could run into evaluators who view it very differently and end up with an entirely different classification.

[WoolC]

I agree with contacting Susan Barton.

But really I want to be nosy! My son was diagnosed about a year before the new ASD diagnosis with levels 1,2,3 and I have not really found any good information about it.

Do you know any more about it, or do you know any particular reason your son was diagnosed ASD 2?

We are probably going for a re-evaluation later this year, so I will see what they say then, but I really am curious if you know anything about it.

  

We got our diagnosis when the new labels were fairly new and I got the impression that the psychologists were still kind of hashing out how to classify each case. The way the psych explained it to us the levels were meant to show the level of support a child needed. So a 2 didn't necessarily mean that our son was at a particular level in regards to language or functioning but that he required a moderate level of support. In our case in particular, our son requires little support at home but heavy support out of our home, so that kind of averaged out to a 2. I think that you could run into evaluators who view it very differently and end up with an entirely different classification.

Also, the ASD 2 was our original diagnosis that was questioned by a therapist later. Our reevaluation was done by a psychiatrist who basically said that ASD can't be ruled out and he saw no reason to change our classification but that it made more sense for us to tackle specific challenges like sensory issues, anxiety, mutism, academic issues, etc. as they come up rather then general ASD interventions because that's not how my son was presenting. So basically, we're at the point of just trying to do what works instead of quibbling over the diagnosis. I think the psychologists/evaluators have a long way to go in diagnosing these issues in any coherent way. It can cause so much confusion.

[PeterPan]

Lecka, this is the article I was reading on severity levels, but I didn't have a chance to follow up on the topic to see how they resolved the issues. As Wool says, it was fraught with contradictions. Really though, probably the tool they used to diagnose him (ADI-R, ADOS, GARS, something) kicked out a severity level. The tools keyed to DSM5 apparently do. So then the discrepancy is looking at an autism-specific tool vs. something like the Vineland that is looking at adaptive living vs. IQ. All three would affect the actual degree of support needed for the individual.

 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3989992/#!po=55.0000

[PeterPan]

  

Also, the ASD 2 was our original diagnosis that was questioned by a therapist later. Our reevaluation was done by a psychiatrist who basically said that ASD can't be ruled out and he saw no reason to change our classification but that it made more sense for us to tackle specific challenges like sensory issues, anxiety, mutism, academic issues, etc. as they come up rather then general ASD interventions because that's not how my son was presenting. So basically, we're at the point of just trying to do what works instead of quibbling over the diagnosis. I think the psychologists/evaluators have a long way to go in diagnosing these issues in any coherent way. It can cause so much confusion.

 

Others have kind of said this, but I'll say it too. My ds is MORE visible with his autism now in some ways than he was before ABA. It's not that he's worse, but that we've calmed down some of the behaviors that could have been explained more ways (being bad, being non-compliant, being ADHD, it's mom's fault, etc.) and we're just down to your more glaringly obvious things (restricted interests, perseverative behaviors, rigidity, social thinking deficits, etc.). But those distinctly autism traits were lost with so much going on. Now, a year later, we're no longer confused, and frankly no one I say it to wonders either. They used to, but it's because they were seeing so much. Now they just meet him and go DUDE THAT WAS WEIRD because his social issues, etc. are so unexpected.

Edited April 12, 2017 by OhElizabeth

[Guest]

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Edited August 17, 2017 by Guest

[Guest]

Kids can move up and down the severity levels at different times in their life and the reasons will vary for each one. All one has to do is look at how the ADOS was standardized to the new DSM to see that the old DSM classifications have nothing to do with the new severity levels.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2922918/

 

The cases in the link above show this variation in level of functioning at different times of a child's life. Even the old Asperger's diagnosis is not guaranteed a Level 1.

 

http://www.myaspergerschild.com/2011/02/aspergers-different-levels-of-severity.html

 

WoolC, I completely agree with your psych. The level is not what is important. Dealing with the main challenges of autism that affect a specific child's life, is. Your psych reminds me a bit of Barry Prizant's mentality. You find the route cause of the challenge and help the child develop the appropriate strategies and coping skills.

 

Baker's book looks very promising. I'll give you an update when I'm a bit further into it.

Edited April 12, 2017 by Guest

[Guest]

My kid is the opposite. As he calms down, he does more and more eye contact, spontaneous speech, and is able to regulate better. I can actually see the wheels turning in his mind now before deciding whether he should do something or not. He doesn't always make the best choices but just the fact that he is stopping to think, is progress.

[Lecka]

I looked at the links, and the levels don't seem helpful at all at this point!

[WoolC]

My kid is the opposite. As he calms down, he does more and more eye contact, spontaneous speech, and is able to regulate better. I can actually see the wheels turning in his mind now before deciding whether he should do something or not. He doesn't always make the best choices but just the fact that he is stopping to think, is progress.

We see this too with my son. He seems to go through cycles with his behaviors. When he has been sick, not sleeping well, off the normal routine we see more behaviors typically associated with ASD, frequent meltdowns, getting stuck on a topic, aggression, he regresses academically, etc. When we're on a good routine, eating well, sleeping etc all of those behaviors recede. I'm thinking the sensory stimulation info you posted earlier might help us to move out of the downward spiral quicker when things do get off routine.

 

I loved Barry Prizant's book; I made my mom and husband read it too. I would agree that is our psych's approach.

[PeterPan]

I looked at the links, and the levels don't seem helpful at all at this point!

 

Well what it really means is they're not *consistent* across providers. And the whole point of why they're being researched and discussed is that they ARE used to determine funding, services, and access. So this is very high stakes stuff the DSM has set up with minimal guidance.

[Guest]

I looked at the ADOS scoring, in connection to the new DSM and in comparison to the old DSM enough, to get a bit of a better appreciation of the new scoring system. Not that I don't think it has its cons. I can see much better now, though, how much more fluid autism is in regards to functionality. And there are many contributing factors to it. The modules that they have created in the ADOS now, based on age, is definitely as step in the right direction. But again, there are so many other contributing factors! The fact that sensory issues have been added in the new DSM is not to be taken lightly! Like Temple Grandin says, there should be more focus and studies done in that direction. So many nonverbal autistic people are affected by it!

Edited April 13, 2017 by Guest

[Guest]

I loved Barry Prizant's book; I made my mom and husband read it too. I would agree that is our psych's approach.

Barry Prizant is one of my favorite people  :) ! Right up there with Temple Grandin and Tony Attwood. 

 

Barry Prizant, from Uniquely Human: 

 

Here is what I have learned from my years in the field and from Ros Blackburn and others: There is no such thing as autistic behavior. These are all human behaviors and human responses based on a person's experience.

 

...Instead of classifying legitimate, functional behavior as a sign of pathology, we'll examine it as part of a range of strategies to cope, to adapt, to communicate and deal with a world that feels overwhelming and frightening. Some of the most popular autism therapies make it their aim to reduce or eliminate behaviors. I'll show how it's better to enhance abilities, teach skills, build coping strategies, and offer supports that will help to prevent behavioral patterns of concern and naturally lead to more desirable behavior.

 

This is how I choose to view behavior, which is why I agree with your psych  :) . When the child has the strategies to cope or becomes more comfortable with some of the original stressors, certain patterns of behavior are often no longer necessary.

Edited April 13, 2017 by Guest

[Guest]

I can't help but chuckle at the title vs. the direction this thread has now taken  :lol:

[Guest]

And of course Baker begins his book, right from the intro, with gradual exposure  :lol: Seems I picked one that is in line with my way of thinking :D ! 

 

ETA: Mind you, gradual exposure is a big part of CBT. So, yes, I did expect it. 

Edited April 13, 2017 by Guest

[Guest]

WoolC, another way to handle the sensory is to figure out the source of the stressor and either work on desensitization or if you feel he is not ready, you can help him find the best coping strategies that work for him. The sensory will most likely always be there in some way. It's the way we deal with it that makes a difference.

Edited August 17, 2017 by Guest

[WoolC]

I can't help but chuckle at the title vs. the direction this thread has now taken :lol:

I know, right? Lol. I'll say even though the thread has shifted it has really helped. I've taken the pressure off myself with reading and my ds can totally pick up on when I'm stressed so it is helping his attitudes in school as well. We're on day 3 of Dancing Bears and I think just ten minutes a day of really focused attention on decoding and fluency with this curriculum is going to move him farther along than trying to keep up the long Logic of English lessons.

 

Thanks to everyone who had suggestions for helping ds with reading or otherwise, lol!

[Lecka]

Based on my son and saying ASD 2, my opinion on the original post is: consider AAR not AAS, spend more time on reading individual words not in connected text, and keep going slow. Don't try to read the Level 3 readers without working on individual words from the stories ahead of time. Focus on how much harder it can be to read words in connected text than to read individual words, build fluency with individual words first, maybe even with phrases and sentences, before moving to entire stories. Break one story down that way for practice.

 

My son is 8 and that is what would be good advice for him. I got him AAR 1 this year (to supplement public school) and he has been putting in time doing what I have mentioned, also drilling on phonograms.

 

He confuses vowels sometimes and it is a sign to slow down in some way. Probably to read

fewer words at a time. His stamina is hard to build up. You can do things like read every other sentence (if he is good with sentences in whatever book) or you read a few sentences and then he reads one. Whatever reduces the number of words at a time to where he is not getting overwhelmed. That "putting it all together" piece can need to be broken down, too.

 

But my son has got a totally different profile. His language level is "can speak in sentences and make his wants and needs known." In other words he has a major language delay.

 

And then he does not have anxiety (right now, he could develop it when he is older), and his sensory issues right now are minimal. We can go out without making any special plans for him and expect him to do fine, or as well as our other kids.

 

He is in public school and his strength is PE.

 

I am guessing his ASD level will be 2 or 3, but it seems like it doesn't mean he has anything particularly in common with other kids who might have that level. I read the OP and thought "ASD 2, maybe like my son," and it sounds like they have an almost opposite profile.

 

With autistic disorder at least there is going to be something in common with language level. There are kids with autistic disorder who are like my son in their profile, I can describe it to somebody familiar in a few sentences.

 

What I would like in a level is something where I can meet another parent and say "my son blah-blah" and it conveys some useful information, and we can have an idea of what each other's kids are like.

 

Maybe there are things in common but I just don't know what they are yet.

 

But I do think ASD gives a lot of information, and it is just assumed there will have to be some explanation. But then to give a level I expect it to be informative in some way and I don't think it is that informative.

 

From what I am picking up, if they are going by score ranges on the ADOS, the problem is the lower and higher scores could be from any areas, but they will average out into one number. So then two kids have the same number, but their high and low scores could be in opposite areas. So then it is just not very informative to me in wanting to get to mentally picture someone's child.

 

The main thing I have found with autism is broadly all kids have stuff in common, but specifically any one strength or weakness doesn't go along with implying if another area will be a strength or a weakness. There are profiles that go together, but it takes time to figure them out, and I think a lot can be lost by thinking what worked with one child with a certain label will also work with another child with the same label, without actually looking and seeing if the same reasoning is valid.

 

So I think it does need to be individual, but I think more could be done with seeing what works with other kids *actually* similar in some ways, not just with the same label. Because people who have worked with a lot of kids DO have that sense, but it is not because they are going off of a level or label.

 

But yet that is what we all have to use and the best we have got.

[Guest]

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[Guest]

I've taken the pressure off myself with reading and my ds can totally pick up on when I'm stressed so it is helping his attitudes in school as well.

This is how I have built on my own mindfulness. Yes, when they see us stressed it affects them as well. They learn a lot more from our actions and reactions to stress than from our words sometimes. It has made a difference in our home too.

[Guest]

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