Question about ASD and processing disorders

[Mom2Five]

You guys have been so helpful. I am very impatient waiting for all these evaluations and referrals. I've been reading whatever I can. For some reason at age 4 I was convinced dd had APD. I now read the symptoms though and it doesn't seem to fit anymore and I'm not sure why I've been convinced it was that.

I've looked up other processing disorders in children and see CAPD, but all the info I read about is that it is pretty much APD. I've tried to look up other processing disorders, but everything comes back to APD when I google to get more info.

Basically what I'm wondering, and what I think I've read is that if she obviously has a processing/communication issue but it cannot be diagnosed as anything else than it falls under the category of ASD. Is this correct to anyone's knowledge here? When I take her in and she gets tested for all these things and there is no diagnosis does it automatically fall under an ASD diagnosis?

People who have ASD can have APD, SPD etc though right? So that makes me think that im not correct in how ive read the information.

[PeterPan]

No, ASD is not a diagnosis by exclusion.  There are plenty of nuanced labels they could do.  (various kinds of delays, MERLD, SLDs, ID, SCD, etc.)

 

Has she had any evals yet?  OT?  SLP?  If you start somewhere, anywhere, they can give you a screening tool and point you in more directions.  Just depends on what is going on.  You can't get a full APD test until 7 around here.  There is a screening tool, yes, and it's true I took my ds in and had them do a full audiology eval and some screening at age 6.  But she's just young to get that sorted out.  But there are plenty of OTHER evals you could be getting done.

 

So what are her symptoms?  What was happening to make you think APD, and what is happening now?

Personally, I wouldn't guess diagnoses from anything you see online unless what you're reading is the DSM5.  There's a lot of incorrect information out there.  SO much incorrect information.  

 

How old is this dc and what are the symptoms and how have they changed over time?

Edited February 28, 2016 by OhElizabeth

[Lecka]

I googled and here is a copy of the DSM 5 autism criteria.

 

http://www.cdc.gov/ncbddd/autism/hcp-dsm.html

 

It doesn't say anything about sensory issues, auditory processing, or visual processing. But difficulties with any of these are very common with autism.

 

But some people voted and decided on the DSM 5 criteria, even though you can read other things (especially from more than 10 years ago) where people talk about it in different terms. But these people think these two areas are the common denominators they see (in their opinion). So this is it!

 

But you might look into "girls on the spectrum" stuff. There are a lot of girls who get missed bc of not looking like boys.

 

Just two I am aware of: tony attwood's site has a drop-down box from his home page about girls. And there is a website called spectrumnews.org I look at sometimes that has a lot about girls.

Edited February 28, 2016 by Lecka

[Crimson Wife]

CAPD and APD are two names for the same thing. It is when pure tone hearing thresholds are normal but the individual's brain has difficulty processing auditory input, especially speech.

 

ASD and ©APD are frequently co-morbid. ASD and AD(H)D are also frequently co-morbid, however, and it can be tricky teasing apart difficulties with attention from difficulties with auditory processing. And to really muddy the water, working memory deficits can also cause APD-like symptoms.

[Storygirl]

Has she had her hearing tested? A child who has a slight hearing loss might hear well enough that no one thinks "hearing loss." But they might still miss enough that it mimics a problem with attention or processing.

 

 

 

Edited February 29, 2016 by Storygirl

[Mom2Five]

No, ASD is not a diagnosis by exclusion.  There are plenty of nuanced labels they could do.  (various kinds of delays, MERLD, SLDs, ID, SCD, etc.)

 

Has she had any evals yet?  OT?  SLP?  If you start somewhere, anywhere, they can give you a screening tool and point you in more directions.  Just depends on what is going on.  You can't get a full APD test until 7 around here.  There is a screening tool, yes, and it's true I took my ds in and had them do a full audiology eval and some screening at age 6.  But she's just young to get that sorted out.  But there are plenty of OTHER evals you could be getting done.

 

So what are her symptoms?  What was happening to make you think APD, and what is happening now?

 

Personally, I wouldn't guess diagnoses from anything you see online unless what you're reading is the DSM5.  There's a lot of incorrect information out there.  SO much incorrect information.  

 

How old is this dc and what are the symptoms and how have they changed over time?

 

Ok, that is good to know that I understood that wrong.

 

She had an eval at the age of 3 with early steps. I forget the 3 categories...I think speech, language and motor skills. They determined she was severely delayed in all 3 areas and she qualified for the full day free program through the public schools. She was delayed with speech and language issues, but I didn't agree with the motor skills delay at the time. She was in an awful mood for the tests and things they were asking that she wasn't doing I knew she could do. It was either her mood or a communication issue I felt....as in she could do it but wasn't understanding what they were asking. She went to speech through the public school system in a group setting at the age of 3 until summer hit. She participated in the program at the school and they allowed her to go half day, since I wasn't comfortable with the full day program. I was already homeschooling my older two and knew I would homeschool her as well.

 

When she was 4 she went to private speech/language therapy. I don't remember the results there, but I think they said her language skills were around that of a 2 year old. I am actually going to call and try to get a copy of her evals from early steps and the private practice if they still have them. She stayed in speech there for about half a year and was about to get evaluated for OT, but our insurance dropped us and we lost our time slots. We had children going through surgeries another baby coming and never did get back to speech before the move. Our Ped at that office refused to refer for any other testing and basically told me to put her in public school. She was very anti-homeschool. I called a psychologist that a friend referred me to for a full eval and they did not take our insurance and it would have been $1500 which wasn't doable at that point. She went to a private preschool during this time also. In the beginning it did not go well at all. She had issues with transitioning from different activities and of course communicating. I shared my concerns about autism and other issues and the director though it wasn't autism because of the amount of pretend play she did, but agreed she needed to be evaluated for something. This is when I brought it up to the ped and she made the comment about just putting her in public school. A few months into the preschool year she was fine and had adjusted? I guess and they felt that I no longer needed to have her evaluated and looked at me strangely when I said I was trying to get her into an OT and have evals done.

 

At age 6 we moved to a new city, so new ped. She saw right away what I was talking about and told me I was right on and thought she was on the spectrum. She sent us to a behavior group (private company) and she was evaluated. I felt at the time it was not a good eval but I had nothing to compare it to. She basically asked me questions and observed her playing. She felt that despite her severe language issues that she was not on the spectrum for autism. She assured me though that they weren't just going to leave me hanging and were going to help point me in the right direction of more testing...never happened. I had to contact them several times just to get the official write up from the eval. At the end of the appt. we had discussed her seeing their speech and language therapist there and maybe she could point us in better directions. After I finally talked to them again, they said there was a month waiting list for their speech. At the time the van was broken down and they would be able to come to the house so I told them to put us on the waiting list. A month and a half later, I call back and ask what is going on. I then find out that they don't even accept her insurance for speech and it wasn't really a waiting list it was more of a we are still trying to get approved by the insurance company to accept it list. I was so pissed off. That was around Christmas time so I decided to wait until after the holidays. Then it looked like we were going to move back home the beginning of Feb. so I decided to hold off until we were moved back. It now looks like we might be here until April so Im basically just trying to do everything I can while we are still here.  I have calls into the ped trying to get referrals for a neuropsych eval and an audiologist eval which I only knew to do because it was recommended to me on this board. I have an appt for her to have her hearing tested at the local university, but they said they only test for hearing difficulties and not processing disorders. It is a major university so I don't know why they don't offer both. I called the public school district this morning to try to get evals done through them for her and my ds8 and the director of that department is supposed to be calling me back .

 

She is 6 years old and I have also heard that an audiologist wouldn't do a complete eval for APD until age 8 so I was kind of waiting around not knowing what else to pursue. The main issue is that she isn't capable of having a conversation. She can do an extent, but the majority of the time she doesn't understand what you are saying and when she answers you, the answer will be completely off. A lot of times if people say hi how are you, she will ask them to buy her a pet. She cannot answer questions about things like what did you eat for breakfast, what did you do today etc. You cannot reason with her at all. My dd9 had some sensory issues where she would gripe about what clothes she had to wear but I could just tell her to suck it up. My dd6 picked up those clothing issues after watching her, but there is no telling her to just wear it and she can change and take it off when she gets home. Her clothing issues also wouldn't make sense. She could refuse to wear anything but dresses for a week, but then the next week she would refuse to wear the same dresses she was fine in. Then it went to stretchy pants, but the next day she would no longer wear stretchy pants. She went through a period when we got here of refusing to wear anything but underwear and when we had to leave the house she would scream for 30 min or more about having to wear clothes. All of a sudden she started wearing clothes and hasn't had an issue with her clothes since, I did mention this at the asd eval, as well. It is hard for her sometimes to get out her thoughts. She will have to think a while when talking. She will start a sentence..stop and think. She doesn't do that all the time, but maybe half of the time.

 

I thought APD when she was younger, because it was like she was hearing you but not really hearing what you were saying.

I read the DSM5. I will have to read again.

 

Also, I know this is super long, but I forgot that when she was an infant if she would be in a shopping cart and someone would come over and say hi...like oh look what a cute baby. She would get hysterical to the point that she would throw up within minutes. Until she was around 3 she would throw up and get hysterical if we had a play date at someones house or went over to grandmothers house even if we had been there over and over again. She didn't really talk until she was 3, and wasn't potty trained until a few months before she was 4 and she still holds her pencil with a full fist grasp which is the only thing I can think of that it motor skills related.

I feel like being with her 24/7 im missing a lot of things so im starting to try to right stuff down. I feel like someone else evaluating her could prob see more clearly the issues. She had nothing traumatic happen and no head injuries etc.

 

The other day we were doing math facts and we were having a great time. I was giving her high fives and she was laughing. Then I had to stop and find a missing card and she totally changed, told me I was a bad teacher and she wanted a new teacher and on and on.

Then she wanted to watch her video so I put on the subtraction part and was trying to explain subtraction (I know you show with objects, this was just a real quick explanation before the video) so I said remember subtraction means less. It means you take away. Then she lost it and said no your not going to take my stuff away. Just thought id throw that out there for one of the latest incidents.

[PeterPan]

You've clearly got some severe language delays.  What are your options?  

 

Big red flag for APD is trouble hearing you in noisy backgrounds.  Chipotle, a convention, with the kitchen fan on...  Given everything you've said, it may go beyond that.

[Crimson Wife]

 I shared my concerns about autism and other issues and the director though it wasn't autism because of the amount of pretend play she did 

 

The main issue is that she isn't capable of having a conversation. She can do an extent, but the majority of the time she doesn't understand what you are saying and when she answers you, the answer will be completely off. A lot of times if people say hi how are you, she will ask them to buy her a pet. She cannot answer questions about things like what did you eat for breakfast, what did you do today etc. You cannot reason with her at all.

 

My DD has always loved pretend play and on the surface it looks fairly typical for a young girl. It is only when you really watch her closely that you can tell it is more scripted and that she has real difficulty changing the scenario in response to what a play partner wants to do.

 

Holding a back-and-forth conversation is something that has taken a TON of work from both her Applied Behavioral Analysis therapists and her speech therapist in order for her to be able to do. She's now finally starting to get the hang of it, but she still has a tendency to either repeat a question or statement that she's already said, or to veer off-topic.

[Mom2Five]

I did just hear back from the school system and basically they said that because I was homeschooling they couldn't help me. She said basically they could do the assessments but it would result in nothing because my children aren't in school so there is no therapy etc. available to them.

I called the Dr.'s office...again...and she is supposed to be calling me back today and letting me know if she is going to do the referrals or if she wants to see us again in office first.

The women in charge of the testing at the public school said she thought there was something in addition to the hearing and speech screening offered at the local college so I am trying to look into that now. Even the hearing and speech screening they offered is very basic and their speech department doesn't accept our insurance so that isn't an option. We are right next to Florida State University so you would think they would have some options. She has an appt

for the hearing screening, but they said it is just to test hearing and that they don't test for processing disorders etc.

Any idea what department to look up at the university that might offer additional testing? I don't see anything when searching.

I really am not pushing for a diagnosis I just want the therapies/help that a diagnosis would offer. She obviously needs it.

[PeterPan]

You are wanting a hospital or university with an autism clinic.  That's what you're wanting.  If you want the APD considered, then you want a referral to an audiologist who specializes in APD who has a full booth set-up.  That audiologist can do your basic audiology eval *and* a screening.  Then they determine if you need a full APD eval.  A full APD eval is quite expensive, so you don't do that unless there's some indication.  If she is having NO issues with background noise, I wouldn't even be bothering with that.  It's fine to do your basic audiology, but to go directly to a full APD eval (in our area is $1600) with NO issues understanding in background noise, that's a waste.  

 

I don't know places in Florida, but it's a big state.  Somebody there will have what you need.  You're going to need to google and be prepared to travel.  Will your insurance pay for it or are you paying for it yourself?

 

The point of going through the ps is not that they do perfect evals or would give therapies.  The point is that it's FREE and that if you don't AGREE with the results you can DISPUTE and get them to pay for independent, 3rd party, private evals.  In other words, if a person has no insurance, no way to make those $$$ autism evals happen, that's a way to get there.  It will take a full calendar year and be more un-fun than you can imagine, but it's a way to get it done.  

 

So yes, if you have the option to go private (with insurance, with self-pay), then obviously that's the more efficient way.  You need ALL the evals (speech, OT, psych, etc.), and one way to get that is in a clinic that specializes in autism.  

 

I'm googling here, and it looks like FSU has an autism center.  See if they're well-known for that.  If they aren't, then try other universities or a major hospital.  

 

[Crimson Wife]

Some SLP's do CAPD screening if you're having difficulty finding an audiologist. There is one SLP clinic near me that specializes in CAPD, and according to their website, they offer the Test of Auditory Processing Skills (TAPS-3), Auditory Processing Abilities Test (APAT), SCAN-C-3 (Auditory Processing Screening Test) and the Goldman-Fristoe Test of Auditory Discrimination. That won't replace going into the booth with an audiologist for full CAPD testing, but if you're going to be having a speech & language eval done anyways, you might want to ask if the SLP can run some of the CAPD screening tests.

[geodob]

Mom2Five,  from reading what you have described.  

I wonder if what your daughter has, is a delayed development of her 'inner speech'?

 

Inner speech is what you are probably using as you read this?

Where you can hear the words in your mind, without saying them out loud.

Also when you write a reply here, you probably use to construct and rehearse sentences, as you write them.

 

Inner speech is what we use to reflect and form thoughts in our mind.

Where we can talk through something in our mind, to arrive at a conclusion.

Or to form an answer to a question.

 

Though when people can't use inner speech?

They recall and speak in 'scripted statements'.

Her response to your explanation of 'subtraction', suggests that she couldn't reflect on what you meant by 'take away'?

 

You also wrote that: 'She cannot answer questions about things like what did you eat for breakfast, what did you do today etc.'

But if I asked you those same questions?

You might observe how you form a reply in your mind?

 

So that I wonder if her underlying issue, could be a delayed development, of her ability to use Inner Speech?

[Mom2Five]

Mom2Five,  from reading what you have described.  

I wonder if what your daughter has, is a delayed development of her 'inner speech'?

 

Inner speech is what you are probably using as you read this?

Where you can hear the words in your mind, without saying them out loud.

Also when you write a reply here, you probably use to construct and rehearse sentences, as you write them.

 

Inner speech is what we use to reflect and form thoughts in our mind.

Where we can talk through something in our mind, to arrive at a conclusion.

Or to form an answer to a question.

 

Though when people can't use inner speech?

They recall and speak in 'scripted statements'.

Her response to your explanation of 'subtraction', suggests that she couldn't reflect on what you meant by 'take away'?

 

You also wrote that: 'She cannot answer questions about things like what did you eat for breakfast, what did you do today etc.'

But if I asked you those same questions?

You might observe how you form a reply in your mind?

 

So that I wonder if her underlying issue, could be a delayed development, of her ability to use Inner Speech?

 

I have never heard of that before. Thanks for mentioning it. I will look into it. I guess I have just used the term language instead of inner speech.  

[Mom2Five]

You are wanting a hospital or university with an autism clinic.  That's what you're wanting.  If you want the APD considered, then you want a referral to an audiologist who specializes in APD who has a full booth set-up.  That audiologist can do your basic audiology eval *and* a screening.  Then they determine if you need a full APD eval.  A full APD eval is quite expensive, so you don't do that unless there's some indication.  If she is having NO issues with background noise, I wouldn't even be bothering with that.  It's fine to do your basic audiology, but to go directly to a full APD eval (in our area is $1600) with NO issues understanding in background noise, that's a waste.  

 

I don't know places in Florida, but it's a big state.  Somebody there will have what you need.  You're going to need to google and be prepared to travel.  Will your insurance pay for it or are you paying for it yourself?

 

The point of going through the ps is not that they do perfect evals or would give therapies.  The point is that it's FREE and that if you don't AGREE with the results you can DISPUTE and get them to pay for independent, 3rd party, private evals.  In other words, if a person has no insurance, no way to make those $$$ autism evals happen, that's a way to get there.  It will take a full calendar year and be more un-fun than you can imagine, but it's a way to get it done.  

 

So yes, if you have the option to go private (with insurance, with self-pay), then obviously that's the more efficient way.  You need ALL the evals (speech, OT, psych, etc.), and one way to get that is in a clinic that specializes in autism.  

 

I'm googling here, and it looks like FSU has an autism center.  See if they're well-known for that.  If they aren't, then try other universities or a major hospital.  

 

Thank you. I am going to make an appt for her on Monday and speak to the dr in person. I am having a hard time going back and forth with the nurse. It is probably not all their fault, since my phone only works with wifi and I've had to leave the house a couple times while waiting on the call. If I would have known it would have been so complicated to get an answer, I would have made an appt in the first place. I always try to avoid it if I can though because of the germs. I looked up audiologists in our area and there are none. It looks like the closest one was in Georgia about an hour and a half away. I am going to try to get the dr to do a referral for Jacksonville then and we will just go when we are moved back. I saw on another post that a speech therapist might be able to do the evals so I will have to look into that. Maybe that will be a way to get a test done sooner in our area.

 

I have called the FSU autism center before and it seems like they don't do evals but just therapies and offer services to the family once they are diagnosed. I made another call yesterday when you posted that and left a message. Maybe I called the wrong division or the person I talked to just wasn't aware of all the options.

[Roseto27]

Honestly, it doesn't sound like APD to me. I would look into asd again with an examiner familiar with girls on the spectrum. Trouble with transitions, language delays, and several other points you've made really sound more like autism than an issue with auditory processing.

 

This flier may help some in the meantime when you're looking at DSM 5 criteria for asd. http://suelarkey.com.au/wp-content/uploads/2015/05/Tip_Sheet_-_Girls_with_an_ASD.pdf

 

 

The clothing issues you describe may or may not be spd related. The way you wrote about them almost made it sound more control issue oriented. However that doesn't mean they're not spd related. Have you tried looking at any of the spd checklists online? Kids can be seekers or avoiders (or a mix) in several categories (auditory, tactile, gustatory, etc.). Either way, though, most insurance companies don't recognize spd as a "real" diagnosis. It can be a way to help you communicate with an OT about what's going on, but it's not really going to get you extra services for your daughter, which is the whole point of a diagnosis IMO.

 

I would focus on getting a speech, OT, and PT eval set up for right after the move. In addition, I would look at getting seen by a developmental pediatrician who has experience with girls on the spectrum. There will likely be a 4-6 month wait list for this, but it will be well worth it. There will be a ton of paperwork, you'll spend 4 hours with her observing your daughter, and come away with more compete answers. Even if you have to pay out of pocket (call around, but plan on $300-500), your answers will be faster, more complete, and with less headache than trying to go through the public school system.