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Rebecca

Mixed Expressive/Receptive Language Disorder

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My daughter recently completed her evaluation from the psychologist and I received the results and had the conference yesterday.

She received a mixed expressive/receptive language disorder diagnosis

with a secondary diagnosis of pragmatic communication disorder.

I am reaching out to see if anyone is familiar with this and can share experience?

We were referred to find a speech-language pathologist who is comfortable with teens (she is a freshman).

Thank you for any help!

 

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This is possibly close to autism, I would ask if the speech therapist was not able to diagnosis autism for some reason.  

Otherwise — this is very broad!  Her specific needs will be specific to her.

Social Thinking has a lot for pragmatic language, depending on what is appropriate for her.  

There is a lot out there.  

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That's a lot to digest! Was it what you were expecting? And has she had SLP evals yet?

The SCD (social communication disorder) was added to DSM5 and is incredibly disputed. Basically it means she fit all the criteria for autism minus 1, and many people think those kids would go on to get an autism diagnosis if the practitioners dug further. Given that it's a girl and that girls present differently, it's definitely a question to be asking. 

So not to make your life harder, but I would get a 2nd opinion from an autism expert and take your time. We had a psych incorrectly diagnose my ds when we started, and it held us back from the correct interventions and funding for a LONG TIME. This is not the time to play nice and trust, because the difference in funding for services and what doors open will be huge. 

This is a teen? Again, you want an autism expert to slow down and go at this again and really take their time on JUST the autism question. How many hours did your psych spend? Most psychs are sort of generalists. If you dig, you'll be able to find a psych who specializes in autism and autism in girls. You might have to drive. It would be worth the effort. You have college and all kinds of issues coming up to deal with.

That's pretty significant if she's a teen and getting diagnosed with the language disorder. Has she had speech therapy or an IEP in the past? How is her reading comprehension and writing going? Your challenge here is identifying all the ways the language disability are impacting her and finding high quality testing (beyond what the psych did) and intervention. Are you near a major city? 

I would look for 1-2 SLPs to work on the language. I say possibly two, because they can have different strengths. Tell us more about what is going on, but many verbal people will use some form of tech as well. Sometimes their language drops as they fatigue, sometimes it's for writing, whatever. Using tech does NOT mean you're not verbal. So she could have two hours of therapy a week going through receptive and expressive language with someone who specializes in autism. They can assess her vocabulary, morphology, syntax, etc. and do interventions there. They can assess her narrative language and do intervention. They can work on social thinking and do intervention there. And there's tech, self-advocacy, etc. But that's NOT just one hour a week. That's possibly two different people even and don't be hesitant to push for hours. They can try to combine things, but this is an area where more is good. There's a lot that could be explored. 

The other thing I would look for is a good psychologist who specializes in autism to do counseling with her. Given the pragmatics and language issues, she's going to have all kinds of things they can work on. Did they find anxiety, etc. as well? 

Anyways, that's what I would do. You can also do interventions yourself, depending on how brave you are and how much you like to do things yourself. Or you can bone up on what could be evaluated and done so that you know how to advocate for her.

What goals does SHE have? What does SHE recognize as her biggest issue right now or the thing most holding her back from her goals?

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Thank you for these responses!

My daughter is and has been homeschooled her entire life- so she has never had an IEP-- she has also never been flagged for speech or had a speech issue/concern (I share more about this below)

The psychologist stated that she does not have autism or autistic spectrum disorder-- she did have a "basket" of symptoms that fall in that category- what used to be considered symptoms of Asperger's-- and those she defined under the pragmatic communication disorder.

Please help me: how do I know if I need to dig deeper related to autism? I have felt that she has a learning block/barrier with reading, writing, and what she hears (see below). She is a very reserved, disciplined girl with a very strong work ethic.

The most pressing piece of advice/suggestion was to find a speech language pathologist who 1.) deals with language disability not just articulation and 2.) is comfortable with teens

I suspected a learning disability for many reasons- two most related to this are:  her difficulty and in some cases inability - to understand both what she hears and reads as well as her difficulty in expression:  sharing how she feels, what she thinks, both verbally and in writing. I could share more about this. She has struggled terribly with grammar, reading, and writing.  She can read- she just doesn't understand what she read in context. We spent last semester in a writing intervention course through Wings to Soar Online Academy- and she will be taking the next session this semester. This course really helped her but it is (and was) misery.  She often has trouble understanding complex instructions spoken to her in various settings such as out of the home activities, etc. She doesn't hear clearly when information is provided to her and has trouble relating the details. She equally struggles with written instruction.

She has taken standardized testing several times in her life and fallen in the 30-45% range consistently- with comprehension being much lower. This is consistent with what the psychologist found during her recent evaluation. She is in the middle third.  She is my fourth child (out of nine) and this is significantly different and lower than her older siblings and as of now her two younger siblings. I suspected a learning disability impacting her comprehension but it could also be her intelligence/ability.

She does not and never has had a speech disorder. She does not have a phonological issue. She has never had speech or been flagged as needing speech.One reason it t took me this long to have her evaluated because I kept pondering dyslexia and when I would screen and try to figure it out- she did not screen dyslexic. Teaching her to read was very difficult. She learned using Explode the Code. It was only in the last two years as I have been working with one of my younger children (age 7 right now) who is being tested and I suspect has severe dyslexia- that I started connecting more dots with this daughter.

She did not assess for anxiety- but I can tell you that she does struggle with anxiety in different ways.

She is strong in math- but is not comprehending much in her other subjects- or comprehending very minimally. My goals were/are to help her become a proficient writer and communicator. As of right now. she is still considering her future and what she would like to do/be. We are encouraging book-keeping as one path for her that might be a good fit. She is in an honors Algebra course online and has an A average at this time. I think she is also a kid who performs better in real life than she does on standardized tests. Like I wrote above, she is a very hard worker.

I welcome your thoughts!!!

-Rebecca

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Has she had a hearing evaluation by an audiologist? I assume a hearing issue has been ruled out, but in case it has not, it is worth looking into. The kind of screening done at the pediatrician's office is not thorough enough.

DS14 has pragmatic language issues and yet is not, as of yet, diagnosed with autism (he has nonverbal learning disorder). I agree that an experienced SLP can work on communication issues. You might contact the local high school to talk to the speech therapists there to see if they can recommend a private practitioner.

Or, if your local school will provide services to homeschoolers (some do; some don't), you could pursue an IEP through the school, so that she could get therapy there. Through the school would be my second choice probably (though DS is enrolled in school and works with a SLP for his IEP goals), because they are likely to offer fewer hours of therapy than you would get privately.

I will also say that it is not uncommon at all for a psych to miss an autism diagnosis if they do not specialize in evaluating autism. Did the psych do a full autism diagnosis or just some screening things and offer an opinion? Because if she exhibits characteristics that could be considered like Aspergers, it just rings some bells for me. What did she say were the things that ruled out a diagnosis? Autism can look different in girls.

She may very well have the language issues but not have autism. But pragmatic difficulties are so commonly associated with autism that it's worth considering whether you think she had a thorough enough screening.  https://www.understood.org/en/learning-attention-issues/child-learning-disabilities/communication-disorders/understanding-social-communication-disorder

DS14 was diagnosed with NVLD (not in the DSM; under the DSM, he probably would have received a SCD diagnosis from other psychs) at age 10, but I have always wondered if another psych might decide the autism question differently. Did you suspect autism at all?

You probably know this, but pragmatic language is the part of communication that is not spoken. The nonverbal cues and the things inferred but not stated outright. Reading comprehension difficulties are common, because reading is not just about deciphering what is on the page but understanding the writer's intent, the connections between ideas, and how the details point to a larger picture. That requires pragmatic language skill.

Also, missing nonverbal cues really affects communication. Some speculate that up to 65% of all communication is through nonverbals, so kids like my son may miss up to 2/3 of the MEANING of what they hear. And going through life missing all of that means they have absorbed less background information as well.

It's not surprising that deficits in pragmatics then can also affect written output. Much of writing is forming connections, and when the student has trouble forming connections, it makes sense that it will affect what they write and also what they are able to talk about.

You may know all of this already. But in case the psych didn't explain it, or if it is all new to you, I thought I would share some of what I've learned.

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For writing, I'm wondering about the Wings to Soar program. You say it's helpful but also hard. I'm wondering how much you are helping her with it. With such language difficulties, she should be getting accommodations for academics and would be if she had an IEP and were enrolled in school. It's appropriate for you to modify and/or provide supports. It's okay to modify the assignments yourself, above what the online program requires.

Actually, I have met the Wings to Soar author at a homeschooling convention (more than once), and if you have not already, I think you should call her. She was so willing to talk to anyone who came into their booth. I'm sure she would discuss your daughter's new diagnoses and enduring difficulties with you.

Also, I used her program for early elementary when she was just developing it (it was still in the beta stage), for my dyslexic daughter. It was so intense and time consuming, and in the end, it was not what DD needed. I don't know what the program at the high school level is like, but it's possible that as designed, it is too much for your daughter, and that she needs a slower pace or less volume of work.

I would just consider how you can tweak what you are doing to work better for your daughter. If it is good AND hard, consider what makes it so hard and try to reduce that impact, while retaining what is good. Because as a homeschooler, you are still her primary teacher, even when you are using an online program, so it's okay to step in and see how you can make it work better.

Edited to add: I looked at the website, and they offer consultations with their intervention specialist as a service. So it's possible she would charge you. But maybe not?? Who knows? It's worth a try to contact them and say you use their program and have a new diagnosis and want to speak with someone about how to provide appropriate accommodations, over and above what is built into the program.

Edited by Storygirl

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Thank you so much for the reply!

She has never had a screening by an audiologist- we have never suspected a need for one? Her issue doesn't lie in hearing the sounds or words- it is in understanding meaning and making inference and connection. -- as far as I have ever suspected---

I have never felt that my daughter could not or did not hear me. I have felt that she didn't understand me (or something else heard). She has also missed details in instructions or conversations.

However, this is really interesting to think about... is there a way I could tell at home that an audiologist appointment is necessary? She has, of course, been screened at the pediatrician.

We cannot get services through the public school system at all where I live. The most they might do is screen- but I actually had a very difficult time even getting to that position. In the end, I went with a private professional for my daughters. It is not just homeschoolers-- students in private school also face the same challenges. They will not help you at all if you homeschool- and they make it difficult to even get evaluated. 

The psych did not do a full autism evaluation. She screened for autism. I do think she saw some signs that could be indicators but not the full picture of what would be found. I do not know how autism presents in girls. I am checking out the link you shared.

May I please ask? How does Autism sometimes present in girls? Several of you have mentioned that... I have not ever suspected autism in my daughter-- I have suspected learning disability. However, please do not take this to indicate a closed mind. I want to help her, and I want to understand. 

Storygirl, thank you for all the things you shared (about comprehension, writing, etc.)  Yes! Everything you wrote makes sense and relates to my daughter. The psych stated that a more fine-grained assessment by a Speech-Language Pathologist was needed in order to fully determine my daughter's situation. 

Regarding Wings to Soar, I again confirm everything you wrote. I do assist and support her with the assignments, and I do modify as needed. Yes, it is extraordinarily time consuming- made less so by me- because I am a Writing Tutor so I can remediate and assist at every level with the assignments.  

I actually did email the director the day after I received the assessment results and shared the diagnosis- because prior we were operating under a possibly dyslexia diagnosis. We did discuss it a bit- and determine that the programs she is using are still appropriate however-- she also soundly recommended a speech language pathologist as being the first and primary step I need to take with her. 

I agree that Wings to Soar is incredibly helpful and willing to communicate with and assist parents. The psychologist also evaluated their offerings and determined that they offer true intervention and recommended my daughter continue as well.

I do feel a little lost right now, though. 

Sometimes, it feels like it is not that my daughter CAN'T do the work-- it is just so INCREDIBLY painful and HARD for her. It is very difficult for both of us. This is true with Wings to Soar- but also true with a program I would use myself. 

Another question- if anyone reads this far--- at this time- the psych and Wings to Soar do NOT recommend my daughter taking a foreign language- and that perhaps it will never be appropriate for her. Foreign language is a graduation requirement in my state- and it is also required for a four year college. Can a student be released from this requirement on the college level through disability services? I am just wondering if my daughter should honestly consider a path that does not include a four year degree? The psych offered to write a letter to release her from that high school graduation requirement.  I am just thinking about it all.

Thank you for your help.

Rebecca

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3 hours ago, Rebecca said:

The psychologist stated that she does not have autism or autistic spectrum disorder-- she did have a "basket" of symptoms that fall in that category- what used to be considered symptoms of Asperger's-- and those she defined under the pragmatic communication disorder.

See this still doesn't make sense. Aspergers is now under the autism umbrella. If she qualifies under DSM4 criteria for aspergers, she ought to fall under ASD for DSM5. And why didn't the psych refer you and compel you to go get SLP evals immediately, given the severity of what she's diagnosing???

3 hours ago, Rebecca said:

She does not and never has had a speech disorder. She does not have a phonological issue. She has never had speech or been flagged as needing speech.

And now is when we slow down and explain. SLP=speech LANGUAGE pathologist. Way more than articulation. The SLP is supposed to be handling the language delay, yes. The SLP should have been diagnosing the language delay, yes. And no, if her phonological processing is fine it's not dyslexia. Dyslexia is phonological processing. Now SLD Reading is a broader umbrella. Did the psych diagnose SLD Reading? That umbrella includes dyslexia AND comprehension and probably more. SLD Reading is what the DSM says, and it's a big umbrella. She can have issues enough to need intervention but not get the diagnosis. The SLD diagnosis comes and goes with test scores and personally I find the whole thing idiotic sometimes. My ds is the same person, but his SLD labels change each time. It's crazy. 

 

6 minutes ago, Rebecca said:

The psych did not do a full autism evaluation. She screened

Well there you go.

8 minutes ago, Rebecca said:

May I please ask? How does Autism sometimes present in girls?

Now you're asking the right questions! And I really appreciate how hard you're trying with this. You've gotten a lot of shocks and it's great that you're being open-minded. And some things take time.

So the answer is one google, two read some good books, three realize that a surprising number of women on this board (WTM overall) are diagnosed. So it DOESN'T look like you think. As far as the googling, you'll find articles. For books, Tony Attwood has one, but I found Pretending to be Normal to be helpful. Just start somewhere and don't make assumptions. Sometimes it's a journey and it takes time. Some of this is going to transfer to being her question. Like you have your question, which is what do I do for her, and then there are her questions, which might be totally different. I think it's ok as a parent to want answers the dc isn't ready for, and I think sometimes we aren't in the heads of the kids and don't realize they have questions we aren't yet answering. So just have that conversation, kwim? 

In general, in girls there's a lot more masking. There are some studies on actual differences, like statistical differences. Some of it was how they behaved in groups. I don't know if I pinned that article, sorry. That's why I'm saying just google, because you'll find stuff. There were striking differences in playground behavior, for instance. The girls still fit the criteria, but there's more ability to blend in and hide.

Ok, I'm going to be pissy rude, because I am. The psych isn't the one to decide if the tutoring service is offering adequate intervexprepared to do. I don't know them, but I'm just saying you get that figured out by asking an SLP who specializes in expressive-receptive language. You had a LOT of language-related issues you mentioned, and they're occurring across a number of settings. I'm astonished your psych is not referring you to an SLP. It would absolutely be in their field if you got the right one. 

Gotta scat, back later.

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About foreign language.... this is what I know from having two kids with reading disabilities (one comprehension/pragmatics and one with dyslexia) and what I have been told by our public school and the private dyslexia school that my daughter attends:

Colleges will waive the entrance requirement for a foreign language done in high school, if the high school did not offer foreign language. Our dyslexia school does not offer foreign languages, so their students cannot take it, and colleges still admit the students.

Now, there is no law that colleges must waive this requirement, as far as I know! And it may not be true of all colleges but seems to be true in our state. If there is a local college that you think is a target school, you could call and talk to an admissions officer about this.

What colleges require for foreign language within their own programs is also going to vary.

I'm just kind of practical when I think about college. DH and I went to college and were high achievers (DH attended an Ivy), but we are not sure all of our kids will follow the four-year path, and we are exploring a lot of different options for them. And it's okay. You might think about several possible paths she could pursue. With communication issues, there can be employment issues, and having a college degree is not a guarantee of being able to find and hold a job. Have you explored your community college programs?

I don't want to throw cold water on your hopes. She may very well make great progress and go through college. But when high school work is so hard, and you know college will be harder, there are things to consider about what path might be best.

It's hard. Right now I have a 17 year old, and as much as I like the idea of a four year college for her, I'm not sure it's the practical or best choice (and she does not have any LDs; there are other reasons for her alternate plans). But it's hard to consider doing things differently.

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One other thing to consider as you decide what therapy to look for is whether your daughter is interested in participating. DS is resistant to therapy, which means he participates in a lackluster way and does not practice the skills outside of the sessions and complains about having to do it. The last couple of years, we tried both a psychologist (first visited for another issue, but the psych was interested in working on developing language skills in DS) and a social skills group. I can't say that all of those sessions and the cost of them ended up making any difference for him, because he was not interested in working on the skills. He does get sessions with the SLP at school, and I'm glad, because taking him to private sessions at this point would be fruitless.

I mention this just because your daughter is a teen, and the results of therapy will depend on how much she is willing to work on things. Social and communication skills are really important for future job and social success, so it is totally worth it to make therapy a priority. But she will need to understand why it is important and agree to participate.

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My son (11yo) has mixed expressive/receptive language delay. I don't have much to add to what the others suggested... We work really really hard just to make very slow progress. It is frustrating some times, but we continue to make progress and that is all that matters. 

I'm glad you were referred to an SLP. My son has been in speech therapy on and off since he was 3 because he also has an articulation delay. We continue to work on this pesky r sound but mostly his therapy sessions focus on language skills. I think you will find a good SLP makes a huge difference. Hopefully your dd is on board because at her age you really need her cooperation. If you have that, you should see improvement in a lot of areas!

We have also been down the autism road. Basically a MERLD diagnosis is going to overlap with the language portion of an autism diagnosis. That makes it very worthwhile to explore the possibility that your dd is autistic. In our case, we just have the MERLD diagnosis. My son fits the autism diagnosis to a T when it comes to language issues, but he has no other autism symptoms. 

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I was doing some googling and found this article about pragmatics and how it affects employment and the kinds of therapy that might help. I didn't get all the way to the end, but I found it really helpful. The article is an overview of other studies and focuses on intervention with those who have intellectual disability. However, the information might apply to anyone with pragmatic issues, in my layperson opinion, and might help the OP and others target what interventions they hope an SLP can teach.

https://opensiuc.lib.siu.edu/cgi/viewcontent.cgi?referer=https://www.bing.com/&httpsredir=1&article=1245&context=gs_rp

ETA: ARGH at the very end, the article mentions that there is a large need for SLPs to be trained and interested in treating pragmatics, because most are not. It was written in 2012, so maybe there is some hope that there has been progress in this area since then.

Edited by Storygirl

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22 hours ago, Storygirl said:

Has she had a hearing evaluation by an audiologist? I assume a hearing issue has been ruled out, but in case it has not, it is worth looking into. The kind of screening done at the pediatrician's office is not thorough enough.you, I thought I would share some of what I've learned.

I agree with this and getting a screening for auditory processing disorder if the psychologist didn't already run one.

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And then go read the SLP blogs saying that APD is actually due to language disorder. There's data on comprehension in noise for bilingual children and the weaker language is the one where it shows up. 

My dd is wearing a filter from AbleKids so I'm not saying don't pursue it. More it means get the evals for language . Also screen for retained reflexes. SLPs anecdotally find that integrating retained reflexes bumps language.

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