Parents with kids who have social pragmatic communication disorder

[Anonymous]

I am just wondering if the experience of parents on here with kids who have this disorder. My son at 10 recently got this as a diagnosis for his recent neuropsychological evaluation and I am trying to think of some nice tips to help my son since he also has a learning disability in reading comprehension and poor attention.

[Anonymous]

My son has that diagnosis. He doesn't quite check all the boxes for an autism diagnosis, but that's basically what it is and the recommendations for supporting social skills for autistic kids apply.

[Anonymous]

Anonymous wrote:My son has that diagnosis. He doesn't quite check all the boxes for an autism diagnosis, but that's basically what it is and the recommendations for supporting social skills for autistic kids apply.

How is it like? I know that diagnosis as far as I have been checking has been pretty controversial and I don't think a lot of parents even know about it, aside from a friend of mines whose adult son has at and also had a former diagnosis of PDD-NOS in toddlerhood.

[Anonymous]

The name gets changed every time they change the DSM. First it was pragmatic semantic disorder, then it was PDD-NOS, and now Social Communication Disorder and Pragmatic Communication Disorder.

My DS really fit the Pragmatic Semantic Disorder with a little extra. Then he was PDD-NOS and now either ASD Level 1 or Pragmatic Communication Disorder.

He also fits the standard science/math/engineer geek. He has low muscle tone and coordination. He had trouble with finding friends K-12. He found his friends in college - all very similar to him.

He needed explicit teaching in the social graces. He needed specific ways and coping skills to deal with unexpected events and disappointments.

What helped him was a weekly “social skills” group from 4th through 12th grade where they addressed issues and trouble shooted things that happened each week. It also came with a monthly parent group, where we learned a few things and trouble shooted problem areas.

He was in Boy Scouts, our faith community’s youth group and in orchestra. Those activities are social but have adults around to help smooth out the edges.

[Anonymous]

My almost 10 year old son has this diagnosis as well, along with ADHD. To be honest, we are still figuring out how to navigate this, though he was diagnosed last year. Right now, my DH works with DS one on one after school, on things like executive function exercises, some math topics that are difficult for him, and reading comprehension. For whatever reason, DH has been very resistant to the idea of doing social skills therapy. But one way or the other, I think we will need to try this because we have consistently received feedback from teachers that DS has some challenges with social interactions and I imagine he will have more difficulties as he gets older and his immaturity relative to his peers becomes more obvious.

[Anonymous]

I am glad to have found some others with kids with this diagnosis! Was feeling a bit like a unicorn. My 10-yr-old daughter has an SPCD and ADHD diagnosis. She has friends; mostly it's other neurodivergent or younger kids she gets along with best. She often gets in bad social situations with more typical kids who are confused/offended by her not realizing something or being too pushy, etc. Or with mean kids who see her as vulnerable. She is in a social playgroup and I think it helps, if nothing else to let her know she's not alone with having social issues. If anyone knows of a parents/kids group for SPCD, would love to know of one.

[Anonymous]

Anonymous wrote:I am just wondering if the experience of parents on here with kids who have this disorder. My son at 10 recently got this as a diagnosis for his recent neuropsychological evaluation and I am trying to think of some nice tips to help my son since he also has a learning disability in reading comprehension and poor attention.

My older teen has this diagnosis. He had a hard time making friends in elementary school. He wasn't playing alone at recess but he wasn't invited to playdates or parties outside of school. He fixated on topics of interest to him. He would ask the same question over and over as a way to engage. He also didn't get social cues, so he would make an observation not understanding that it may hurt another kid's feelings. What I did: I had to explicitly coach him when he did this. As in: "you already asked me that question and I already answered it. You could ask me a follow up question now such as ___" Or "when you said that, it hurt my feelings because ___". Or - I am busy with x now, I can't listen to this right now. I would always say these nicely and without judgment, very neutrally. Over time, it helped. It's a process. Your kid doesn't intuit these social cues, so you have to explicitly teach them. While at first it felt a little mean, I realized it was worse to let him keep doing these things without teaching him.

Perhaps because of improved social skills, he did find a really nice friend group in later middle school and stuck with them through high school. He also found a hand on activity he really loved and dove into that. It brought a social group too.

A formal social skills group did not work at all for my kid because his issues were subtle and he was way too advanced for what they were working on. He did 1:1 speech therapy along with my coaching as natural learning opportunities presented.

[Anonymous]

Anonymous wrote:My son has that diagnosis. He doesn't quite check all the boxes for an autism diagnosis, but that's basically what it is and the recommendations for supporting social skills for autistic kids apply.

I disagree that this is basically Autism. It is not and the same recommendations do not apply.

[Anonymous]

Anonymous wrote:

Anonymous wrote:My son has that diagnosis. He doesn't quite check all the boxes for an autism diagnosis, but that's basically what it is and the recommendations for supporting social skills for autistic kids apply.

I disagree that this is basically Autism. It is not and the same recommendations do not apply.

It’s almost like autism, except it focuses only on the social issues. I've heard many people with the social communication disorder still consider themselves to be on the spectrum/neurodivergent and I think it might make sense, I think this just depends how their masking skills are.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:My son has that diagnosis. He doesn't quite check all the boxes for an autism diagnosis, but that's basically what it is and the recommendations for supporting social skills for autistic kids apply.

I disagree that this is basically Autism. It is not and the same recommendations do not apply.

It’s almost like autism, except it focuses only on the social issues. I've heard many people with the social communication disorder still consider themselves to be on the spectrum/neurodivergent and I think it might make sense, I think this just depends how their masking skills are.

No. The level of social impairment is dramatically different from ASD. Also, what you "heard" or what people consider themselves to have is totally irrelevant. Social media is full of people claiming they have this or that due to self diagnosis. That is NOT how these disorders are diagnosed. Criteria is set via the DSM, and there are standard evaluation tools used by professionals. Please stop spreading misinformation. I say this as a professional who works in this area with children who have both of these diagnoses.

I do think our understanding of both of these disorders will continue to evolve, and the next DSM may look different. I would also like to see better diagnostic tools. I have hope for that with advances in brain images and genetic research. We'll see.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:My son has that diagnosis. He doesn't quite check all the boxes for an autism diagnosis, but that's basically what it is and the recommendations for supporting social skills for autistic kids apply.

I disagree that this is basically Autism. It is not and the same recommendations do not apply.

It’s almost like autism, except it focuses only on the social issues. I've heard many people with the social communication disorder still consider themselves to be on the spectrum/neurodivergent and I think it might make sense, I think this just depends how their masking skills are.

No. The level of social impairment is dramatically different from ASD. Also, what you "heard" or what people consider themselves to have is totally irrelevant. Social media is full of people claiming they have this or that due to self diagnosis. That is NOT how these disorders are diagnosed. Criteria is set via the DSM, and there are standard evaluation tools used by professionals. Please stop spreading misinformation. I say this as a professional who works in this area with children who have both of these diagnoses.

I do think our understanding of both of these disorders will continue to evolve, and the next DSM may look different. I would also like to see better diagnostic tools. I have hope for that with advances in brain images and genetic research. We'll see.

Given how 'light' autism diagnoses can be now, the social piece here can easily be the same if not more severe than the social piece on some kids with ASD diagnoses. This forum is filled with parents noting that their kid was a little quirky but always was social or on teams or whatever, and then they got a ASD diagnosis and they weren't sure it fit, but they were willing to acknowledge their kids struggled more with social relationships than their peers. My kid without an ASD diagnosis comes across much worse socially than that.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:My son has that diagnosis. He doesn't quite check all the boxes for an autism diagnosis, but that's basically what it is and the recommendations for supporting social skills for autistic kids apply.

I disagree that this is basically Autism. It is not and the same recommendations do not apply.

It’s almost like autism, except it focuses only on the social issues. I've heard many people with the social communication disorder still consider themselves to be on the spectrum/neurodivergent and I think it might make sense, I think this just depends how their masking skills are.

No. The level of social impairment is dramatically different from ASD. Also, what you "heard" or what people consider themselves to have is totally irrelevant. Social media is full of people claiming they have this or that due to self diagnosis. That is NOT how these disorders are diagnosed. Criteria is set via the DSM, and there are standard evaluation tools used by professionals. Please stop spreading misinformation. I say this as a professional who works in this area with children who have both of these diagnoses.

I do think our understanding of both of these disorders will continue to evolve, and the next DSM may look different. I would also like to see better diagnostic tools. I have hope for that with advances in brain images and genetic research. We'll see.

Listen I think you're in a little bit of denial.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:My son has that diagnosis. He doesn't quite check all the boxes for an autism diagnosis, but that's basically what it is and the recommendations for supporting social skills for autistic kids apply.

I disagree that this is basically Autism. It is not and the same recommendations do not apply.

It’s almost like autism, except it focuses only on the social issues. I've heard many people with the social communication disorder still consider themselves to be on the spectrum/neurodivergent and I think it might make sense, I think this just depends how their masking skills are.

No. The level of social impairment is dramatically different from ASD. Also, what you "heard" or what people consider themselves to have is totally irrelevant. Social media is full of people claiming they have this or that due to self diagnosis. That is NOT how these disorders are diagnosed. Criteria is set via the DSM, and there are standard evaluation tools used by professionals. Please stop spreading misinformation. I say this as a professional who works in this area with children who have both of these diagnoses.

I do think our understanding of both of these disorders will continue to evolve, and the next DSM may look different. I would also like to see better diagnostic tools. I have hope for that with advances in brain images and genetic research. We'll see.

Lol what? Its not even about social media.

[Anonymous]

Anonymous wrote:My almost 10 year old son has this diagnosis as well, along with ADHD. To be honest, we are still figuring out how to navigate this, though he was diagnosed last year. Right now, my DH works with DS one on one after school, on things like executive function exercises, some math topics that are difficult for him, and reading comprehension. For whatever reason, DH has been very resistant to the idea of doing social skills therapy. But one way or the other, I think we will need to try this because we have consistently received feedback from teachers that DS has some challenges with social interactions and I imagine he will have more difficulties as he gets older and his immaturity relative to his peers becomes more obvious.

Seems like the opposite. My kid loves math and his teachers see it as a strong strength in him. His reading though..not so much. He has a SLP to help him on social skills and reading with his IEP and it has been working a lot for the past five years.