Neuropsych said APD is a relabel for broader language disorder?

[MyLittleBears]

She seemed to be implying it is a lucrative business to rename it auditory processing disorder and offer all kinds of services but it reality it already had a name. Anyone else hear this? 

[PeterPan]

Language or Auditory Processing Disorder in Children | Symptoms & Treatment | Cincinnati Children's Hospital Medical Center

[PeterPan]

Maybe you missed some things in what the np was saying?  There are hardly any interventions offered for APD.  HAs, FFW, that's about it.  And even the HAs aren't mainstream or widely available yet.  You might get the FM transmitter.  

 

They're offering no explanation on language processing disorder causes, even though the symptoms are overlapping with APD.  And neither are in the DSM, yes?

 

 

[EKS]

Our experience was that APD was the *least* lucrative of anything my son was diagnosed with.  We live in a major metropolitan area and it was difficult even finding someone who could diagnose it.  And, once it's diagnosed, it's Fast ForWord or nothing (at least it was 10 years ago).  Everything else is just accommodations--and not very good ones, if you ask me.

 

Now vision therapy--*that's* a lucrative business!

[MyLittleBears]

Okay that makes more sense. Ds 2 was diagnosed with dyslexia but her words were,"a broader language disorder is suspected" because he gets bogged down with information coming at him too fast or with language that is too complex. He accommodates beautifully when the language is more clear/simple and a bit slower. My concern is coming from his always going "what did he/she say" when we watch tv, for example. It happens all the time. His phonological awareness is perfect (passed the Barton screening) but if I don't enunciate during Barton lessons he gets things wrong. I'm just trying to determine if I need to take him to an audiologist or if I'm barking up the wrong tree. I found one that does screening for both auditory processing disorder and regular hearing. I hesitate because of what the neurophych said and because I keep hearing that most kids that go to him don't leave without that label. Two of our boys are doing OT for SPD, and one for speech so we are already a bit maxed out with the therapies! But you say that don't have any interventions anyway so I guess I'm not sure I should even bother. Should the neurophych report be enough......

[MyLittleBears]

Our experience was that APD was the *least* lucrative of anything my son was diagnosed with.  We live in a major metropolitan area and it was difficult even finding someone who could diagnose it.  And, once it's diagnosed, it's Fast ForWord or nothing (at least it was 10 years ago).  Everything else is just accommodations--and not very good ones, if you ask me.

 

Now vision therapy--*that's* a lucrative business!

 

 

 

 

Ahh vision therapy! We did that for this same child for about six months. Thankfully I found a good covd doc and he did benefit from it. His eyes work together now and he can cross them. No more double vision at reading distance But yes, I think in some cases it is hogwash.

[MyLittleBears]

Maybe you missed some things in what the np was saying?  There are hardly any interventions offered for APD.  HAs, FFW, that's about it.  And even the HAs aren't mainstream or widely available yet.  You might get the FM transmitter.  

 

They're offering no explanation on language processing disorder causes, even though the symptoms are overlapping with APD.  And neither are in the DSM, yes?

 

 

OhE, could you tell me what HA and FM transmitter? I'm assuming FFW is fast forward?

[PeterPan]

Doesn't sound like you like this audiologist, so maybe find a different one? I would want it, just to make sure you're not missing something.  I did it with my ds, but I was able to get it done at a univ for $35.  

 

I also took my dd for the SCAN3 screening portion because after years of being frustrated it was time for an explanation!  We got useful info even from the screening, so I think it's a good thing to get done.  How old is this dc?

[EKS]

Ahh vision therapy! We did that for this same child for about six months. Thankfully I found a good covd doc and he did benefit from it. His eyes work together now and he can cross them. No more double vision at reading distance But yes, I think in some cases it is hogwash.

 

Both of my children benefitted from VT, and I have no regrets about doing it.  But it was $$$.

[Crimson Wife]

Okay that makes more sense. Ds 2 was diagnosed with dyslexia but her words were,"a broader language disorder is suspected" because he gets bogged down with information coming at him too fast or with language that is too complex. He accommodates beautifully when the language is more clear/simple and a bit slower. My concern is coming from his always going "what did he/she say" when we watch tv, for example. It happens all the time. His phonological awareness is perfect (passed the Barton screening) but if I don't enunciate during Barton lessons he gets things wrong.

 

Sally Shaywitz briefly mentions "Language-Based Reading Disorder" as something separate from dyslexia (which is a phonological processing disorder) in her book Overcoming Dyslexia. I haven't been able to find much information on it, however. As my daughter gets older and better able to understand speech with her cochlear implant, I'm more and more convinced that her reading struggles are not due to dyslexia. We won't know for sure until she is able to complete a CTOPP (last summer she didn't have the receptive language understanding to complete the tasks). But she is now writing with "invented spelling" that is phonologically plausible. She can rhyme, segment multisyllabic words properly, etc., etc.

 

I hate to sound like a broken record, but has he had a full audiology exam (not the screening test at the pediatrician's office) within the past year? If not, I would strongly encourage it because it's possible he has a physical hearing impairment that he is able to somewhat compensate for. I had no clue that my daughter was having trouble hearing the high frequencies because she was able to "fill in the gaps" by reading lips and using context clues. It's good that she has those strategies because the cochlear implant doesn't provide 100% perfect auditory access. But it meant that the discovery of her hearing deterioration was delayed.

[MyLittleBears]

Ds is 13. No, I guess we have not had the full screening, I think. He was tested after his PT tubes were removed @ age 4. I was told his hearing was fine. They were put in @ 18 months. Before that he spent about a year with repeated ear infections or fluid in his ears. I highly suspect his dyslexia has more to do with missing out on hearing the high frequency vowel sounds from the fluid and infections than anything else.

[Crimson Wife]

OhE, could you tell me what HA and FM transmitter? I'm assuming FFW is fast forward?

 

Phonak sells a hearing aid designed for kids with CAPD called the Roger Focus. It works with a FM system, which uses digital radio waves to stream the teacher's voice directly to the child's hearing aids (or cochlear implant).

 

I'm not 100% sure, but the Roger Focus probably also works with the RemoteMic & Compilot receiver. The RemoteMic uses Bluetooth to stream the speaker's voice directly to the Compilot, which is worn around the child's neck. The Compilot then sends the information to the t-coil in the HA/CI but I'm not exactly sure how the tech works.

 

The FM system is superior technologically to the RemoteMic, but it is also way more expensive. Right now my DD has a FM system at school and a RemoteMic for her ABA therapy, extracurriculars, & outings with us. Our audiologist is trying to get our insurance to fund a FM system to support her ABA therapy but we're not sure yet whether the request will be approved.

[Crimson Wife]

Ds is 13. No, I guess we have not had the full screening, I think. He was tested after his PT tubes were removed @ age 4. I was told his hearing was fine. They were put in @ 18 months. Before that he spent about a year with repeated ear infections or fluid in his ears. I highly suspect his dyslexia has more to do with missing out on hearing the high frequency vowel sounds from the fluid and infections than anything else.

 

I was told that my DD's hearing was fine after a full audiology exam at age 2. It never occurred to me that we needed to go back for follow-up exams and none of her therapists, teachers, doctors, etc. ever suggested one until age 6 when I pushed the school for dyslexia testing. Progressive hearing loss is unfortunately not that uncommon in children. Only around 1% of children are born deaf but by school age, the incidence of hearing loss is up to 6%.

[Tiramisu]

Ds is 13. No, I guess we have not had the full screening, I think. He was tested after his PT tubes were removed @ age 4. I was told his hearing was fine. They were put in @ 18 months. Before that he spent about a year with repeated ear infections or fluid in his ears. I highly suspect his dyslexia has more to do with missing out on hearing the high frequency vowel sounds from the fluid and infections than anything else.

I agree this could be the case. And there is also a relationship between repeat ear infections and APD.

 

My DD with APD spent her early childhood in a country where pediatricians would not check for ear infections; they believed that was the job of an ENT. I always wonder if she had infections and we never knew. She also has mild hearing loss, still in the range of normal, in one ear. She was a later reader but her reading scores have been very high. However, the VT guy said her eyes move like a dyslexic, slowly stopping on each word.

Edited July 25, 2016 by Tiramisu

[Storygirl]

I agree with having an audiology exam in a booth. Our university will do this for free, so check to see if there is a school within driving distance for you.

 

Earlier this year the ENT that we went to told us that some ENTs and audiologists do not believe that APD is a real thing.

 

And of course there are others who do.

 

If you have lingering concerns, I'd seek an opinion from an audiologist and not just accept the NP's opinion. But if it seems that your local person ends up diagnosing everyone they see, try to find someone else instead.

[MerryAtHope]

I'm just trying to determine if I need to take him to an audiologist or if I'm barking up the wrong tree. I found one that does screening for both auditory processing disorder and regular hearing. I hesitate because of what the neurophych said and because I keep hearing that most kids that go to him don't leave without that label. Two of our boys are doing OT for SPD, and one for speech so we are already a bit maxed out with the therapies! But you say that don't have any interventions anyway so I guess I'm not sure I should even bother. 

 

Agreeing with others--get the full screening. Seems like such an odd thing for a neuropsych to say. 

 

Also, while there aren't a lot of interventions, there is quite a bit you can do to accommodate (some strategies in this article), and also a lot of self-accommodating the child can do--I think understanding, as best we can, the full scope of what's going on with a child, and helping them to understand so they can self-accommodate is helpful and important.

 

(I was that child saying "what?" all the time when I grew up--I learned to self-accommodate quite a bit, but didn't understand anything about auditory processing disorder until I was an adult. It has made sense of so many of my struggles and helped me help my kids too.)

[Kat w]

If APD is present and at play tho, it changes how you teach this child, interact with him, how you help him read so to absorb/process the text,explain and demonstrate chores etc.

 

They don't take in and computer how nt kids do.

 

Since we were diagnosed with sever APD a couple months ago, and changed the ways in which we teach, talk, explain, etc. There have been monumental improvements.

 

And way less frustration for him and us.

 

Imagine how upsetting, frustrating, and dwn rigjt at times 'dumb'/a child with APD feels.

 

Everything takes a hit. Confidence , learning, and fir us, overall happiness in and outside the home.

 

Ita like, OK. Now we know what were dealing with here so there are interventions within everyday life. You change the way you interact with the DC.

 

There may not be alot of formal therapies, but I can assure...there's a TON of intervention s you can implement.

 

My son is in trouble less BC WE change the way we explain, talk, etc.

 

When he listens to audio books ir we do rad alouds, we stop fir often and talk about it and let him " gaze" and absorb the information . this has radically HIS life.

[Kat w]

....and VT,=$$

We pit that at the end of the list fir our 12 yo. Prompt has to come first but whoa. I was surprised

[kbutton]

Jumbled order, sorry! I have a kiddo with CAPD and lots of weird things that don't group under a label. Psychs don't like that and mostly want you to go away--they don't have categories for these kids. 

I agree with having an audiology exam in a booth. Our university will do this for free, so check to see if there is a school within driving distance for you.

 

Earlier this year the ENT that we went to told us that some ENTs and audiologists do not believe that APD is a real thing.

 

And of course there are others who do.

 

If you have lingering concerns, I'd seek an opinion from an audiologist and not just accept the NP's opinion. But if it seems that your local person ends up diagnosing everyone they see, try to find someone else instead. I sort of agree--it could be that this is the only person around who believes it's real and attracts patients accordingly because they self-select to go there. I would do more homework and still consider looking around. There ARE diagnostic criteria for CAPD even though it's more subjective than other things.

 

 

Phonak sells a hearing aid designed for kids with CAPD called the Roger Focus. It works with a FM system, which uses digital radio waves to stream the teacher's voice directly to the child's hearing aids (or cochlear implant).

 

I'm not 100% sure, but the Roger Focus probably also works with the RemoteMic & Compilot receiver. The RemoteMic uses Bluetooth to stream the speaker's voice directly to the Compilot, which is worn around the child's neck. The Compilot then sends the information to the t-coil in the HA/CI but I'm not exactly sure how the tech works.

 

The FM system is superior technologically to the RemoteMic, but it is also way more expensive. Right now my DD has a FM system at school and a RemoteMic for her ABA therapy, extracurriculars, & outings with us. Our audiologist is trying to get our insurance to fund a FM system to support her ABA therapy but we're not sure yet whether the request will be approved.

Thanks for the info! This is news to me.

 

Okay that makes more sense. Ds 2 was diagnosed with dyslexia but her words were,"a broader language disorder is suspected" because he gets bogged down with information coming at him too fast or with language that is too complex. He accommodates beautifully when the language is more clear/simple and a bit slower. My concern is coming from his always going "what did he/she say" when we watch tv, for example. It happens all the time. His phonological awareness is perfect (passed the Barton screening) but if I don't enunciate during Barton lessons he gets things wrong. I'm just trying to determine if I need to take him to an audiologist or if I'm barking up the wrong tree. I found one that does screening for both auditory processing disorder and regular hearing. I hesitate because of what the neurophych said and because I keep hearing that most kids that go to him don't leave without that label. Two of our boys are doing OT for SPD, and one for speech so we are already a bit maxed out with the therapies! But you say that don't have any interventions anyway so I guess I'm not sure I should even bother. Should the neurophych report be enough......

Sounds like CAPD, and at his age, if it's not, he shouldn't be struggling with such basic stuff so much. ***Meaning, I don't think a language disorder explains the hearing aspect of this.*** Of course, it could be straight hearing loss too.

 

The too complex language could be a side problem that stems from CAPD or hearing loss, or it could be a language-based issue that has nothing to do with either. My CAPD kiddo has an extremely high verbal IQ, but no other language scores come close to touching that verbal IQ score. He scores in the 2nd percentile on time-compressed sentences. That means the rate at which he can absorb speech (especially with multiple speakers) is in the toilet. It almost couldn't be worse. 

 

My son couldn't really hear vowels correctly. When he learned to read, he thought thin, then, and than were all the same word, and when he encountered them differently on paper, he thought someone was joking. He pronounced all three the same, and he didn't have a distinct vowel sound for each letter except when the words were crystal clear to him. He actually had to change his speech as he acquired a written vocabulary for those words he was not hearing correctly.

 

He has trouble with song lyrics and anything spoken language. 

 

There are some IEP accommodations for CAPD. Google them. Some section 504 ones as well. The school often classifies CAPD under a language disorder. A court case was won to have it classified as Other Health Impairment, and we fought to have that be my son's classification as well. It worked, but there was strong objection from the school psych. Basically the SN coordinator admitted that kids with this profile struggle at about your son's age (sometimes earlier), and the speech person said if we classify it as a language or speech thing, she's on the hook, and she didn't feel comfortable servicing that in the IEP! 

 

So, some of this is the psych talking turkey about school accommodations, likely. Honestly, there are lists and lists of things from preferential seating to the FM system to a scribe (a lot of these kids can listen or write but not both, and that includes for typing). They basically need to be treated like they can't multi-task because they cannot do anything and listen. School requires you to listen and do stuff all the time.

 

I also find that for stuff like this where it's not clear cut, professionals just point fingers, dismiss, etc. and let the chips fall where they may. That's not really acceptable. They must accommodate meaningfully when they cannot remediate. To get that, you have to have accurate diagnosis and stop having things all mashed together. A child with a broad language disorder may or may not need a scribe, for instance, and they might benefit from language intervention. For CAPD kiddos, they just plain miss stuff, so those interventions might help, but they won't keep the kid from being at a disadvantage in ways that other accommodations will help mitigate, like the FM systems and such. 

 

My son has one CAPD item in his IEP--training to follow multi-step directions. That's huge. It might be impossible, lol!

Edited July 25, 2016 by kbutton

[MyLittleBears]

I guess I was chalking things up to the whole thing Sally Shaywitz talks about with having incorrect recall for words that are similar, due to faulty imprinting of the phonemes or whatever. He not only does the "what did they say?" a lot but also hears the a similar word to the word that is actually said. Sometimes he hears words mumbled.

[MerryAtHope]

I guess I was chalking things up to the whole thing Sally Shaywitz talks about with having incorrect recall for words that are similar, due to faulty imprinting of the phonemes or whatever. He not only does the "what did they say?" a lot but also hears the a similar word to the word that is actually said. Sometimes he hears words mumbled.

 

Yes, exactly. I blogged about APD and how I sometimes hear on my blog: Forgetting Plates and Auditory Processing.

[Kat w]

Kbutton I am so glad you said that about the won court case.

 

This is terrible that (for us) more allowances weren't made in the classroom once they hit 3rd grade.

 

My little bears,

Are you guys in the PS system? And lookin at what can be done in the classroom ?

 

Or what therapies and strategies to be done at home?

 

I know it's a maze to sift and get through .

Is he in ps?

 

I would definitely take him to an audiologist .

 

We knew h had APD, he had been tested. This time around I had the whole sha bang done and it explained alot...alot. And turns out, it's severe.

 

It has helped him now in so many ways BC we changed how we did things.

Edited July 25, 2016 by Kat w

[kbutton]

http://leader.pubs.asha.org/article.aspx?articleid=1901961

 

Here is a link about the court case.

 

Basically, schools/some attorneys or legislators like to say that it's covered under SLD, but it's more of a global hit than SLD. Also, if it's treated as SLD, what do they do to accommodate it vs. vocabulary type remediation programs or receptive language programs, and what happens if the child is struggling but not failing bad enough to get an SLD label? It's either a disability (like hearing, etc.), or it's not. At least that's my take.

[kbutton]

One thing that really sobers me up is that there have been studies done about kids with ear infections that impaired their hearing--in some cases, they have significantly lower tested IQs than siblings. Hearing absolutely influences development. I would imagine CAPD has the ability to lower IQ as well.

[kbutton]

http://www.gifteddevelopment.com/articles/what-we-have-learned-about-gifted-children

 

#18 and #19

 

http://www.gifteddevelopment.com/blogs/bobbie-and-lindas-blog/ear-infections-can-lower-iq-scores

 

 

[Kat w]

I'm going to read these kbutton. Thank you for posting.

 

We had trouble with the school recognizing and taking the steps needed, tho, we didn't knkw how bad it was. I did. My mommy gut was telling me something was seriously wrong. Tho he was diagnosed APD , I didn't knkw that was the key factor to his learning, ir lack thereof.

 

He can fly his lil eyeballs across a page, but have no idea what he's read.

The school talked of gifted because he read so _well" . I said, you do realize he has no clue what he's read tho right?

 

Thy just thought he was quiet. He is quiet but largely in part due to the APD. He has no idea what's going on and will lock up. Totally ahut down. They thought he was just being disobedient .

 

I knew something was bad wrong. I was finally validated this round if evals going through the university.

 

They are working to change the way APD is viewed they told me. Doing research to put out so they can bring awareness. The NP there said ...our little guys are the ones that way back when were viewed as "slow" and forgotten. Put in the back burner BC they didn't know what to do with them.

I can't wait to read these articles .

Edited July 25, 2016 by Kat w

[Crimson Wife]

 He not only does the "what did they say?" a lot but also hears the a similar word to the word that is actually said. Sometimes he hears words mumbled.

 

Definitely go for a full audiology exam just to make sure there isn't a physical hearing issue. Most likely there isn't and the symptoms are due to CAPD or other brain issue, but it's important to have his hearing checked.

[MyLittleBears]

Kbutton I am so glad you said that about the won court case.

 

This is terrible that (for us) more allowances weren't made in the classroom once they hit 3rd grade.

 

My little bears,

Are you guys in the PS system? And lookin at what can be done in the classroom ?

 

Or what therapies and strategies to be done at home?

 

I know it's a maze to sift and get through .

Is he in ps?

 

I would definitely take him to an audiologist .

 

We knew h had APD, he had been tested. This time around I had the whole sha bang done and it explained alot...alot. And turns out, it's severe.

 

It has helped him now in so many ways BC we changed how we did things.

 

 

Still planning to homeschool. This child would have a horrible self esteem had he been in school although I'm not completely against it for the future. It just want to figure out what is meant by "broader language dysfunction. In other words, it is actually what is now called CAPD, and is there anything to be done, either to accommodate or remediate.

[MyLittleBears]

Yes, exactly. I blogged about APD and how I sometimes hear on my blog: Forgetting Plates and Auditory Processing.

 

 

Thank you for posting this. It does sound exactly like what ds experiences.

[MyLittleBears]

Definitely go for a full audiology exam just to make sure there isn't a physical hearing issue. Most likely there isn't and the symptoms are due to CAPD or other brain issue, but it's important to have his hearing checked.

 

 

Just scheduled it. Yay!  The same office will do CAPD screening after they rule out the hearing.

[kbutton]

He can fly his lil eyeballs across a page, but have no idea what he's read.

The school talked of gifted because he read so _well" . I said, you do realize he has no clue what he's read tho right?

 

You might also check out the idea of hyperlexia.

[Kat w]

Just scheduled it. Yay! The same office will do CAPD screening after they rule out the hearing.

Glad you got it scheduled :)

[Kat w]

You might also check out the idea of hyperlexia.

I'll do that kbutton, thanks.

 

We just had evals. I'm not sure if it was mentioned.

 

Honestly, I had so much thrown at me at once, esp some of it I really never expected, ...x 2 kids.

 

I heard someone on here say they made a second appt after the results were discussed. I think I'm going to do that, BC after she said one thing about my 12 yo. I went blank.

I'm going to record it this time. Its easy to mix up things about the 2 also. I mean I have the reports but so much is discussed about those reports...jus..easy to confuse the 2.

 

I'm gonna Google hyperlexia. I don't dare pull out my reports unless I absolutely have to. Sends me into depression :/

[Kat w]

Still planning to homeschool. This child would have a horrible self esteem had he been in school although I'm not completely against it for the future. It just want to figure out what is meant by "broader language dysfunction. In other words, it is actually what is now called CAPD, and is there anything to be done, either to accommodate or remediate.

Gotchya . yes. On in one does so much for these lil guys.

 

Mine went to the PS fir SN preschool then were in spec needs classes til 3rd and 2nd grade.

 

But honestly, the APD , did exactly what you said. Lowered confidence and made them feel not so smart. Even in the spec ed classes. The teacher wasn't going slow enough ( not blaming her, she had 6 kids to teach) but they both need to go slow, and repeat, and discuss, and time to absorb before we move on. Esp. My lil guy.

 

Homeschooling is the perfect environment for these lil sweetpea :)

[Kat w]

My little bears,

 

The NP at UF explained it this way to us . about capd and APD. Ahe said there are 2 camps basically . I can't remember which was first. Capd I think, then....they changed it to APD , but some of the oldchool mindset (her words) refuse to recognize it as APD and still refer to it as capd.

 

I think k...think..and crimson wife will probably have some insight to this, but that the APD broadened it. The more research that's done, the more they find out about it and more encompasses it. The C was dropped.

I think that's the order . think APD came last. And encompasses more.

[Kat w]

You might also check out the idea of hyperlexia.

oh, yea kbutton. Read 2 papargraphs about this and this is him to a T.

 

The PS missed Sooo much w him. They said but he's reading on a 5 th grade level. (Would have been 3 grade levels ahead) Oh, dears, but he's really nit. He has no idea what he's read and when I break down the phonograms...he's clueless.

 

I'm definitely going to make another appt. She hit me with the big stuff first and...mamas brain shut down.

 

I had a biggie about both of them.

She did recommend ADHD meds for him, tho he's not ADHD. ...age said to help him focus, process. and that makes sense to me. He needs something.

Edited July 25, 2016 by Kat w

[Kat w]

Oh.

 

Kbutton. That's in the spectrum.

 

*long pause*

 

I guess she could have been trying to tell me that and I missed it.

 

I was inundated with major info.

 

My 12 yo is HFA.

 

I need to go back in, and, possibly more testing.

Spectrum wasn't even on my radar with him.

Poor lil guy. ...he's been the sleeper. His older brother has the big bulfing glaring signs if everything, his stuff gets missed or, idk, he's quiet.

 

Sigh. More investigation.

Thanks kbutton a tin. This one has been bothering me alot. And isn going away.

 

Maybe the APD was mistaken to the degree that they said it is and is...spectrum stuff aslos.

Maybe not as severe APD as they thought. Hea a tough one. Hard to get much out if.

Hmm.

Man, kbutton. Thanks a ton.

 

You put your finger in something that has been a nagging naggin problem. Something is just not not has been right since birth .

Thanks

[kbutton]

Sigh. More investigation.

Thanks kbutton a tin. This one has been bothering me alot. And isn going away.

 

Maybe the APD was mistaken to the degree that they said it is and is...spectrum stuff aslos.

Maybe not as severe APD as they thought. Hea a tough one. Hard to get much out if.

Hmm.

Man, kbutton. Thanks a ton.

 

You put your finger in something that has been a nagging naggin problem. Something is just not not has been right since birth .

Thanks

 

I hope it helps you sort out your puzzle. I don't know if hyperlexia is a diagnosis of its own, but it does describe a specific type of reading/language problem that is often a part of autism. 

[Tiramisu]

I hope it helps you sort out your puzzle. I don't know if hyperlexia is a diagnosis of its own, but it does describe a specific type of reading/language problem that is often a part of autism.

Just like APD is often part of it, too.

[Crimson Wife]

When the Brain Can't Hear by Teri James Bellis might be a bight dated since she wrote it a while ago, but it's a good read.

 

There is so much controversy surrounding CAPD/APD. I've taken 4 audiology-related courses in my 2nd bachelor's and all 4 professors have given a different opinion on the condition. Researchers just don't have a very good understanding of it yet.

[Kat w]

Just like APD is often part of it, too.

I did not know that tiramisu.

 

I guess with my 12 yo being so...baaahhh!!! All the time. Always working on behavior control, being able to communicate (speech), and jus... All the stuff.

 

My 10 ho , being the quiet one, did hey missed. And, like I kept trying to tell the teacher, you think he's further along and ...gosh this sounds bad but fir lack if a better term,,and seemingly so bright, ...he's. Sadly...actually ..not.

 

He picked up all the extra practice practice practice that I did with 12 yo.

 

Finally in day one of the teachers (the one that wanted to refer him to gifted) said....mmm. We aren't going to do thst. He must be pickin uo what your teaching Micah.

 

And because I basically pretaught everything to both boys, because I knew that would be lost when the material was presented, I taught ahead. So aaorn 10 yo got that info twice of...practice practice practice. And still has trouble.

 

He has been the sleeper for sure. Quiet, and...it was just missed.

 

I went and looked at the autism website. This time veiwing it through the lens of my 10yo.

 

So much fits him. I was floored when the NP told me the degree of the APD. I cried.

 

Man. Well. Gonna make another appt with her.

Focus on Aaron more than my 12 yo and record it.

 

Man. Went in there knowing Micah is HFA, and thinking Aaron had way fewer issues.

 

Came out, micahs 2e ( I didn't know some if the stuff he could do wasn't normal with kids in the spectrum), and Aaron is way worse than the older one already diagnosed HFA.

 

Geeze. Funny how things work out sometimes.

 

Thanks guys. Any info or ad-libs anyone has, ID like to hear them.

 

Thanks three little bears for letting me chat on your thread. Man. Whew.

Thanks ladies. Needed to hear this. I might not have gone back in...and...I REALLY need to now.

[Kat w]

Omg....that's why he sits with his mouth opened head tilted and still even sometimes will drool when doing so.

 

Oh man how did I miss this. I knew was something and something severe bit..man.

[PeterPan]

One thing that really sobers me up is that there have been studies done about kids with ear infections that impaired their hearing--in some cases, they have significantly lower tested IQs than siblings. Hearing absolutely influences development. I would imagine CAPD has the ability to lower IQ as well.

 

A Hoagie's Gifted psych I talked with said that for a dyslexic the IQ will go down over time, yes, that the youngest IQ test will be most indicative of potential/ability, because the dyslexic is not taking in the same amount of language as his peers and is therefore going to drop behind on tests that use language.

[PeterPan]

Kat, on the hyperlexia, my ds, after we began Barton, was basically a hyperlexic dyslexic.  THAT was really weird!  And when I dug in on his language testing (CELF), he basically didn't have the language ability to process at IQ level.  So when I pushed the decoding to IQ level, the language problems became apparent.  He wasn't understanding pronoun referents, wh-words, NOTHING.  On the plus side, because it actually had a cause (language), it had a treatment (language work).  We're doing a lot better with that now, a lot.  We have farther to go, but it's something we can work on, just adding it to the pile.

 

I'm saying language there, but you really, really have to have detailed language testing to sort that out.  I like the CASL better than the CELF for that, because it has a lot more subtests and breakdowns to help you target, a LOT more.  An SLP is where you will usually get the CASL.  Specifically ask what they could do and don't leave it to chance.  

 

See you've got the grammar stuff (pronouns, verbs, the structure of language), but you also have vocabulary, idioms, etc. etc.  There are lots of aspects.  Some people with ASD have serious issues acquiring vocabulary.  My ds doesn't, but many do.  So you want to know to know if that's another thing to target.

 

It would be good to sort out whether there actually is hyperlexia going on or whether he's comprehending but not attending.  If the psych did achievement testing, that should show up.  It sounds like that's also part of the picture the psych was seeing.  Attention can cause some nasty issues with reading.  My dd used to do that, reading a page of a science book and then doing the "I don't know" thing.  She just wasn't turning on her brain, engaging, attending.  Ds was doing it even with a single sentence, and the language issues were showing up other places too.  He was attending, not comprehending.  So it's something you can reread the report and try to sort out.

 

I think that whole thing with attention problems but not testing as ADHD on the stupid tap-tap computer tests is common, COMMON in ASD.  What tap-tap test did she do?  How was he on executive function?  Because, frankly, that would be shocking to say he was fine on EF surveys when he has ASD.  ASD is correlated with the most severe EF issues.  The studies show that the most severe EF scores on the BRIEF (a popular EF survey form) are more predictive of ASD than the ADOS even.  So your real question is why she's saying not ADHD, and then it's the tap-tap test?  And that really varies with whether the dc engages.  It might interest him and he does.  Another tap-tap test might not, and he fails it.  So figure out what tap-tap test she used.  I'm waiting to see how ds does on the Quotient.  So far it's my favorite, just because it kicks out the most data and measures the most parameters the most ways.  Not just tap-tap, kwim?  Peds will do the Quotient.

 

The data shows that behavior modification techniques BEFORE meds get better results than either alone or even together in the opposite order.  So if your psych is saying just throw your ASD kid on meds and didn't say do behavior modification FIRST, she's not up on the research.  This is brand new, like since January.  We've posted the links around here.  Especially when the diagnosis (the ADHD component) is in dispute, that would be a REALLY good time to be bringing in a behaviorist.  You can get improvement on behavior by kicking in their social thinking, their noticing.  When an individual has no sense of group plan, then why would he attend and stay part of the group?  If an individual is not really catching on that people have feelings and thoughts, that my behaviors impact their thoughts about about me and reactions to me, that I have more fun when I have expected behavior, etc., then why would they have expected behaviors?  They won't.  

 

So the social thinking deficits of the ASD (or ADHD, NVLD, etc.) are going to impact behavior, and it's something that CAN improve with behavioral work and social thinking instruction.  Also mindfulness work can help.  My ds is noticeably better with 20 minutes a night.  I just throw the cd on.  He's not like super hard working at it, but just that sort of I was there, a little sunk in, I tried a little, makes a BIG difference with him.  For kids who are working at it, supposedly 10-15 would be enough.  There's research behind it.  Sounds sorta voodoo, but it's WAY powerful and FREE.

 

Wow, that was a rabbit trail from what the op was posting, hehe!  

Edited July 26, 2016 by OhElizabeth

[Tiramisu]

I did not know that tiramisu.

 

I guess with my 12 yo being so...baaahhh!!! All the time. Always working on behavior control, being able to communicate (speech), and jus... All the stuff.

 

My 10 ho , being the quiet one, did hey missed. And, like I kept trying to tell the teacher, you think he's further along and ...gosh this sounds bad but fir lack if a better term,,and seemingly so bright, ...he's. Sadly...actually ..not.

 

He picked up all the extra practice practice practice that I did with 12 yo.

 

Finally in day one of the teachers (the one that wanted to refer him to gifted) said....mmm. We aren't going to do thst. He must be pickin uo what your teaching Micah.

 

And because I basically pretaught everything to both boys, because I knew that would be lost when the material was presented, I taught ahead. So aaorn 10 yo got that info twice of...practice practice practice. And still has trouble.

 

He has been the sleeper for sure. Quiet, and...it was just missed.

 

I went and looked at the autism website. This time veiwing it through the lens of my 10yo.

 

So much fits him. I was floored when the NP told me the degree of the APD. I cried.

 

Man. Well. Gonna make another appt with her.

Focus on Aaron more than my 12 yo and record it.

 

Man. Went in there knowing Micah is HFA, and thinking Aaron had way fewer issues.

 

Came out, micahs 2e ( I didn't know some if the stuff he could do wasn't normal with kids in the spectrum), and Aaron is way worse than the older one already diagnosed HFA.

 

Geeze. Funny how things work out sometimes.

 

Thanks guys. Any info or ad-libs anyone has, ID like to hear them.

 

Thanks three little bears for letting me chat on your thread. Man. Whew.

Thanks ladies. Needed to hear this. I might not have gone back in...and...I REALLY need to now.

Hugs. I don't know if we ever figure it all out. Sometimes I think God has shown me only what I can bear that moment. Other times I'm regretful of not having figured it out sooner to have been able to receive the right help earlier.

 

Kat I'm no sure if you know our story. My oldest was tough as a young child. I saw differences with other kids and I thought it was cultural. We were living abroad. When we got back here, immediately I took her to a neurologist who told me she is normal but she would start having problems in fourth grade. I was just so relieved to hear normal that I didn't worry about the prediction about the future. But sure enough, things in school started to unravel in fourth grade.

 

Somehow I learned about APD and got her screened. The audiologist said it wasn't APD, it could only be ADHD. Years went by. It's obvious she could focus well but she was misunderstanding us. I sat in on her coop classes, I knew she wasn't understanding. Finally I went to a children's hospital with audiologists who knew their stuff. Full eval and APD dx followed.

 

Then one day I was reading the book CrimsonWife recommended, and I realized that DD's symptoms of APD match a subtype that has visual and visual motor issues as well. So one day I asked her if she ever had visual symptoms. DD said to me, when a teacher asks me to look at a hand-out while I'm listening, all I can see are spots. Whoa! She was a high school junior at that point and doing well academically. I never knew she was having to manage difficulties like that, but I knew she stressed to the point of becoming physically ill sometimes. She was working so hard to be able to do well. When we got the np eval, the visual and motor stuff was confirmed.

 

I started thinking back to the audiologist's report on how this could be APD OR a "global" developmental problem. It took me years to realize that by a "global" problem, they probably meant ASD. (FWIW, at that hospital, it's either / or. If there's already an ASD dx, they won't even test a kid because they just assume APD is likely there, too, if there have been symptoms to call for the eval in the first place.) So now we have had the np eval and we have been told firmly "no ADHD" (sure looks like it to me) and ASD did not even come up as a possibility, even with all the processing glitches. I think another np may have seen it differently.

 

It's tough for us to recognize all the pieces and put it all together into a meaningful explanation, and tricky even for specialists in some cases, especially when the child is very bright or even gifted...or a girl who doesn't have the same degree of social difficulties due to nature, reading fiction, or through having psychology and social interaction become a special interest.

 

Kids can change over time. Sometimes their ability to compensate grows with them. Sometimes they hit a wall where the can no longer compensate like they used to or their development doesn't keep pace with their peers, and their difficulties become clearer. Then we can recognize and appreciate them in a way we hadn't before.

 

And sometimes our attention is taken by the ones with more difficult behavior so the quiet ones who might have related problems slip under our radar.

 

Hang in there. It's very obvious how much you care and are involved with your kids. I am they are in good hands with you.

 

More hugs.

Edited July 26, 2016 by Tiramisu

[Kat w]

I needed that rabbit trail (but I don't think it was a rabbit trail, it was needed)

 

On the ADHD thing, I have thought for years that he was ADHD. No doubt in my mind, the teachers thought so too. I've tried to be so careful about meds, and only use them if I absolutely have to.

 

It's possible I could have misheard. My brain...whew. It was all major overload.

 

When Micah 12 yo failed the Barton screening and I emailed her about it, she said Micah needed heavy language work ( no surprise there, has been an issue from the start, and a big one )

So as I started getting to the nitty gritty in the language with both of them but...FOR or what I thought was for Micah, I realized, aaron 10 yo was way worse. The wh- firget it, deer in the headlight. So I would break them apart and work with each one separately. Micah12 yo worked very hard and improved alot. Aaorn10yo....it's as if a sheild was up on his forehead. He would look at me and lock...up. Not knowing how to respond at all. He couldn't...I could tell after much work day after day, break after break ( we were immersing)...he wasn't getting...anything.

 

No fact or opinion, when I realized he wasn't comprehending what he was reading , I kept going back and back and back.

He did not understand a simple sentence. He isn't getting it and focus ,as I got to the nitty gritty, is a huge and serious issue. He's off into space. He tries. But it doesn't seem as if he tries as hard as Micah. I'm seein tho, it's BC he CANT.

 

he has no idea how to process. How to carry out a very simple task and he's gotten in trouble alot , like for chores, school work.

Continuing....phone is lockin uo

[Kat w]

Last nite I told him to take out the trash. Simple right?

 

I handed him a small box to add to it....ibsibsaw him standing over there trying to figure out...what do I do???. He took the bok outside and left the back untouched. This kind of thing happens alot. He studies in his head. I see him do it. He's trying to process and figure out...what am I supposed to do?

 

And he doesn't ask and I know why. He feels dumb.

He was talking to his older sister who he's always been very close to....she said, Aaron ( was videoing like an interview, fun stuff) she said Aaron, tell me something about yourself. He said....I'm awkward.

She came in and told me and I asked him, why did you day that? He said cuz I am. And I know it.

I wanted to cry for him.

 

He doesn't engage in social settings. At all. He doesn't know how to start ir carry on a convo...THATS why he's quiet. BC he simply...doesn't know what to do or say ir respond.

 

His dad gets mad at him alot BC hell say something to him...he doesn't respond. ( he dies it w me too) and we ask him why he isn't responding , he says...I don't know and really just wants to walk away. But I hug him and make sure we end in a positive note somehow.

Continuing ...

[Tiramisu]

It's certainly possible, and possibly more likely than not, to have ADHD in the mix, too.

 

I'm very suspicious of ADHD evals. I've seen one DD score in the severely deficient range on one computerized ADHD test and ok on another--except for impaired visual attention which the np won't call ADHD. ??

Edited July 26, 2016 by Tiramisu

[Kat w]

Soccer, Micah 12 is forward and really good, he does not want to kick the other kids tho...hell let them have the ball if he thinks he's going to have to kick another kid in the shinguards.

 

Aarin? His give a darn is broken . he is forward too.....gets in there and goes.....kicks anybody in the shinguards in the way and around em he goes. Of they fall. He doesn't even notice....

Micah? Is they fall, he has actually stopped playing and gone and helped the child up.

 

I could go on and on.

 

Im going to make him an appt today with the same SLP micahs going to go to . it's going to b the prompt lady. Aaron still doesn't open his cheeks all the way.

You should see me try to go behind him with his toothbrush. ( he has lots of cavities in the back cuz he wasn't opening hi cheeks enough to brush there.

 

He goes in panic mode sometimes when I get back there.

 

I ordered the vibrating toothbrush kinda things he used to use in speech .....it's..bad. But we've improved with stimulating the cheeks etc.

 

This is a way bigger problem than even I thought and I knew it was bad. Some things couldn't b tested cuz he wouldn't /couldn't communicate.

 

In my gut i know he's ADHD.

I ....well. Darn.

 

And she gave or tried to give the clef. I'm glad you told me about the other one and Bette breakdown.

 

I'm going to have the SLP do that one. I knew h should have never been graduated from therapies. I argued my case....but when they said OK...why? I had some points I

[Kat w]

Could put my finger in, most I couldn't. He sticks with his mama alot. I have to make him do sorts and hell only go if I do.

Everynite he lays and cuddles with me. No words. Just cuddle. I try to talk to him and there's a ton of I don't knows. To simple things een , like if he likes something ir not. School pshyc and therapist said...he's just quiet.

No. Something is way worse wring than we thought and it's starting to show more and more as he gets older.