Social pragmatic communication disorder

[Anonymous]

Any experience with this diagnosis?

We brought DS to a psychologist, who at almost age 4, has about a 6 month speech delay. He is painfully shy, introverted, and prefers parallel play. He never showed signs of ASD (initiates play, though struggles in groups) but has always been quirky. He initiated and played with the two aides she had observing, though was easily distracted when she wanted to read, and then again sit to sing together. He focused mainly on playing with her collection of cars. He is in school where he follows directions and is cooperative, though doesn't love the noise and rowdiness of being in a class with 22 kids. Noting his anxious temperament, we brought him for an evaluation to see what we could do to help.

She recommended a social skills group, more speech therapy, and OT (thought his core looked week, and asked how he ran, which is a bit slow and awkward).

[Anonymous]

Anonymous wrote:Any experience with this diagnosis?

We brought DS to a psychologist, who at almost age 4, has about a 6 month speech delay. He is painfully shy, introverted, and prefers parallel play. He never showed signs of ASD (initiates play, though struggles in groups) but has always been quirky. He initiated and played with the two aides she had observing, though was easily distracted when she wanted to read, and then again sit to sing together. He focused mainly on playing with her collection of cars. He is in school where he follows directions and is cooperative, though doesn't love the noise and rowdiness of being in a class with 22 kids. Noting his anxious temperament, we brought him for an evaluation to see what we could do to help.

She recommended a social skills group, more speech therapy, and OT (thought his core looked week, and asked how he ran, which is a bit slow and awkward).

My son has something similar- they keep changing the diagnosis- HFA and Pragmatic-Semantic disorder in previous incarnations of the DSM. He was in a social skills group in ES until they cancelled it. He was in a weekly private social skills group from mid 4th grade to the beginning of 12th grade. If I had known earlier he would have been in it earlier. The more social encounters the better and they need to be supervised activities. Scouts was great for our DC, he played in the orchestra, but band, chorus or theatre are also great activities. We also belonged to a Congregation that practices and taught inclusion and radical hospitality. There are different congregations are inclusive and they run the gamut of faith- it if one does work- try a different one- same goes for the scout troop. This really helped in HS when he was in the youth group. He also has some pragmatic-sematic issues that made English in HS difficult- especially fiction. Summer camps were hard to find-until we found KidRealm in Arlington and he found he loved role playing games- he went to this camp until he was too old to attend.

He is now a sophomore in college (studying Computer Engineering) and has found his "tribe" with a club that plays a role playing game that is specific to that school (similar and not similar to dungeons and dragons). He has found study groups and friends to hang with on the weekend. It was a long slog from social pariah in early ES to where he is now and we have seen him mature slowly- he seems to be about 3 years behind his peers. So, try not to compare your child to his peers, look at the progress your child has made over the past 6 months or year.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Any experience with this diagnosis?

We brought DS to a psychologist, who at almost age 4, has about a 6 month speech delay. He is painfully shy, introverted, and prefers parallel play. He never showed signs of ASD (initiates play, though struggles in groups) but has always been quirky. He initiated and played with the two aides she had observing, though was easily distracted when she wanted to read, and then again sit to sing together. He focused mainly on playing with her collection of cars. He is in school where he follows directions and is cooperative, though doesn't love the noise and rowdiness of being in a class with 22 kids. Noting his anxious temperament, we brought him for an evaluation to see what we could do to help.

She recommended a social skills group, more speech therapy, and OT (thought his core looked week, and asked how he ran, which is a bit slow and awkward).

My son has something similar- they keep changing the diagnosis- HFA and Pragmatic-Semantic disorder in previous incarnations of the DSM. He was in a social skills group in ES until they cancelled it. He was in a weekly private social skills group from mid 4th grade to the beginning of 12th grade. If I had known earlier he would have been in it earlier. The more social encounters the better and they need to be supervised activities. Scouts was great for our DC, he played in the orchestra, but band, chorus or theatre are also great activities. We also belonged to a Congregation that practices and taught inclusion and radical hospitality. There are different congregations are inclusive and they run the gamut of faith- it if one does work- try a different one- same goes for the scout troop. This really helped in HS when he was in the youth group. He also has some pragmatic-sematic issues that made English in HS difficult- especially fiction. Summer camps were hard to find-until we found KidRealm in Arlington and he found he loved role playing games- he went to this camp until he was too old to attend.

He is now a sophomore in college (studying Computer Engineering) and has found his "tribe" with a club that plays a role playing game that is specific to that school (similar and not similar to dungeons and dragons). He has found study groups and friends to hang with on the weekend. It was a long slog from social pariah in early ES to where he is now and we have seen him mature slowly- he seems to be about 3 years behind his peers. So, try not to compare your child to his peers, look at the progress your child has made over the past 6 months or year.

Op here- thank you! Do you mind telling me what your son was like through toddlerhood, preschool, etc.? What seemed to help the most?

DS has always been immature, and the psychologist was on the fence about whether or not he needed to see a developmental pediatrician. She said he had the "soft symptoms" of this...thrown off by the fact he makes jokes, tells me about his "friends," etc. She wanted to see more cooperative play at this age (he prefers solo to groups), more eagerness to join in (he hates birthday parties, crowds, etc.), and more dialogue with classmates (I think his speech delay is probably the biggest issue on the table).

[Anonymous]

Not personally but a close friend's son has this diagnosis. He's 9 now and a great, sweet kid who is very bright and has lots of different interests. His mother says he has some trouble with friendships as he's somewhat "Aspie" (her words not mine) and participating in mainstream activities and camps because he still has sensory aversions but all in all he's doing really well and a happy little guy. He's not really bothered by the friendship issue and not being able to participate in mainstream activities.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Any experience with this diagnosis?

We brought DS to a psychologist, who at almost age 4, has about a 6 month speech delay. He is painfully shy, introverted, and prefers parallel play. He never showed signs of ASD (initiates play, though struggles in groups) but has always been quirky. He initiated and played with the two aides she had observing, though was easily distracted when she wanted to read, and then again sit to sing together. He focused mainly on playing with her collection of cars. He is in school where he follows directions and is cooperative, though doesn't love the noise and rowdiness of being in a class with 22 kids. Noting his anxious temperament, we brought him for an evaluation to see what we could do to help.

She recommended a social skills group, more speech therapy, and OT (thought his core looked week, and asked how he ran, which is a bit slow and awkward).

My son has something similar- they keep changing the diagnosis- HFA and Pragmatic-Semantic disorder in previous incarnations of the DSM. He was in a social skills group in ES until they cancelled it. He was in a weekly private social skills group from mid 4th grade to the beginning of 12th grade. If I had known earlier he would have been in it earlier. The more social encounters the better and they need to be supervised activities. Scouts was great for our DC, he played in the orchestra, but band, chorus or theatre are also great activities. We also belonged to a Congregation that practices and taught inclusion and radical hospitality. There are different congregations are inclusive and they run the gamut of faith- it if one does work- try a different one- same goes for the scout troop. This really helped in HS when he was in the youth group. He also has some pragmatic-sematic issues that made English in HS difficult- especially fiction. Summer camps were hard to find-until we found KidRealm in Arlington and he found he loved role playing games- he went to this camp until he was too old to attend.

He is now a sophomore in college (studying Computer Engineering) and has found his "tribe" with a club that plays a role playing game that is specific to that school (similar and not similar to dungeons and dragons). He has found study groups and friends to hang with on the weekend. It was a long slog from social pariah in early ES to where he is now and we have seen him mature slowly- he seems to be about 3 years behind his peers. So, try not to compare your child to his peers, look at the progress your child has made over the past 6 months or year.

Op here- thank you! Do you mind telling me what your son was like through toddlerhood, preschool, etc.? What seemed to help the most?

DS has always been immature, and the psychologist was on the fence about whether or not he needed to see a developmental pediatrician. She said he had the "soft symptoms" of this...thrown off by the fact he makes jokes, tells me about his "friends," etc. She wanted to see more cooperative play at this age (he prefers solo to groups), more eagerness to join in (he hates birthday parties, crowds, etc.), and more dialogue with classmates (I think his speech delay is probably the biggest issue on the table).

To be honest, it wasn't until 1st grade that I had any clue that there was an issue. I think, for me, it was because he was in the range of my experience. I grew up in a town that had more physicists per capita than any other place except Oakridge, Lawrence Livermore and Los Alamos. Then I went to college at a school where engineering dominated and most of my friends were engineers. My father was a physicist and my DH is a physics/EE Engineer. My whole life, I have been around people who would probably have been diagnosed similarly or on the mild end of the autism spectrum. I also think, if we had lived in any of the above places, he would not have been as far off of the norm as he was in his Mclean elementary (which has lawyers like my hometown had physicists and professors from the various Boston schools). Yes, I am stereotyping, but there is a reason for the stereotype- at least IME.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Any experience with this diagnosis?

We brought DS to a psychologist, who at almost age 4, has about a 6 month speech delay. He is painfully shy, introverted, and prefers parallel play. He never showed signs of ASD (initiates play, though struggles in groups) but has always been quirky. He initiated and played with the two aides she had observing, though was easily distracted when she wanted to read, and then again sit to sing together. He focused mainly on playing with her collection of cars. He is in school where he follows directions and is cooperative, though doesn't love the noise and rowdiness of being in a class with 22 kids. Noting his anxious temperament, we brought him for an evaluation to see what we could do to help.

She recommended a social skills group, more speech therapy, and OT (thought his core looked week, and asked how he ran, which is a bit slow and awkward).

My son has something similar- they keep changing the diagnosis- HFA and Pragmatic-Semantic disorder in previous incarnations of the DSM. He was in a social skills group in ES until they cancelled it. He was in a weekly private social skills group from mid 4th grade to the beginning of 12th grade. If I had known earlier he would have been in it earlier. The more social encounters the better and they need to be supervised activities. Scouts was great for our DC, he played in the orchestra, but band, chorus or theatre are also great activities. We also belonged to a Congregation that practices and taught inclusion and radical hospitality. There are different congregations are inclusive and they run the gamut of faith- it if one does work- try a different one- same goes for the scout troop. This really helped in HS when he was in the youth group. He also has some pragmatic-sematic issues that made English in HS difficult- especially fiction. Summer camps were hard to find-until we found KidRealm in Arlington and he found he loved role playing games- he went to this camp until he was too old to attend.

He is now a sophomore in college (studying Computer Engineering) and has found his "tribe" with a club that plays a role playing game that is specific to that school (similar and not similar to dungeons and dragons). He has found study groups and friends to hang with on the weekend. It was a long slog from social pariah in early ES to where he is now and we have seen him mature slowly- he seems to be about 3 years behind his peers. So, try not to compare your child to his peers, look at the progress your child has made over the past 6 months or year.

Op here- thank you! Do you mind telling me what your son was like through toddlerhood, preschool, etc.? What seemed to help the most?

DS has always been immature, and the psychologist was on the fence about whether or not he needed to see a developmental pediatrician. She said he had the "soft symptoms" of this...thrown off by the fact he makes jokes, tells me about his "friends," etc. She wanted to see more cooperative play at this age (he prefers solo to groups), more eagerness to join in (he hates birthday parties, crowds, etc.), and more dialogue with classmates (I think his speech delay is probably the biggest issue on the table).

To be honest, it wasn't until 1st grade that I had any clue that there was an issue. I think, for me, it was because he was in the range of my experience. I grew up in a town that had more physicists per capita than any other place except Oakridge, Lawrence Livermore and Los Alamos. Then I went to college at a school where engineering dominated and most of my friends were engineers. My father was a physicist and my DH is a physics/EE Engineer. My whole life, I have been around people who would probably have been diagnosed similarly or on the mild end of the autism spectrum. I also think, if we had lived in any of the above places, he would not have been as far off of the norm as he was in his Mclean elementary (which has lawyers like my hometown had physicists and professors from the various Boston schools). Yes, I am stereotyping, but there is a reason for the stereotype- at least IME.

Op here, I completely understand what you are saying (I often joked that DS was just going to be the introverted, brainy, socially awkward guy...not athletic but happy as a clam.) And here we are, with evaluations and OT, and possibly PT to help with core strength.

[Anonymous]

Yes, we have this diagnosis. There will be a lot overlap with kids on the spectrum or kids with severe ADHD b/c kids with these diagnoses can have a hard time engaging and sustaining in conversations as well as picking up the nuances in conversations. If you try for an IEP, they will probably want to lump you in as "autism" vs. OHI. Really, don't stress about this. Whatever gets you the services is what matters.

So ST, social skill groups and one-on-one play dates will help. In terms of seeing a developmental pediatrician, it might be helpful in case there are any motor coordination issues that would not be assessed in an educational evaluation.

[Anonymous]

I think its the new catch-all, which used to be PDD-NOS.

[Anonymous]

Anonymous wrote:I think its the new catch-all, which used to be PDD-NOS.

No it's not. If you don't have a kid with this diagnosis, best not to give ignorant opinions.

[Anonymous]

OP here in responses to the above. DS doesn't have any rigid behaviors, repetitive movements, or other common behaviors associated with ASD. I always wonder if that once we get his language a bit more caught up, if he'll "just" be introverted and awkward.

[Anonymous]

Your child is also really young. Many kids with very mild ASD don't get diagnosed until much older when the social deficits become clear.

[Anonymous]

Anonymous wrote:OP here in responses to the above. DS doesn't have any rigid behaviors, repetitive movements, or other common behaviors associated with ASD. I always wonder if that once we get his language a bit more caught up, if he'll "just" be introverted and awkward.

Well, anyone can be introverted and awkward; you don't need a diagnosis for that. OP, this is a disorder for life; it's not a matter of language becoming caught up. His struggles may be imperceptible or not. They may also change as he grows and the demands in his life increase.

[Anonymous]

Your kid sounds like mine at that age, and this is basically the diagnosis he has now at age 9 from his speech therapist (I think they called it semantic pragmatic disorder). I told his psychologist I wasn't interested in an ADOS at this time because the distinction between autism and "social communication disorder" in the DSM is irrelevant (for DS, at this point) because it won't change any services we seek right now.

My son's biggest challenges have been his difficulties with pragmatic language, overall slow language processing, social anxiety, and, frankly, his low average IQ. The IQ matters because we ended up putting him in a small private which has been fantastic for supporting his social and emotional growth, but most of the kids are really smart with these zippy little brains, and my kid is not like that. But we're making it work with the support of the school. Having the continuity of the same kids in his small class each year has been great, and this year for the first time he has a true best friend and a consistent pack of buddies at recess and lunch. He is also a lot more confident and less anxious.

The most useful other things we have done include 1) holding him back a year for K, 2) long term OT group focused on "Social Thinking" 3) a private speech therapist twice a week for years who also uses the "Social Thinking" stuff and sees him in his classroom. But I am not from DC area so I don't know if private speech pathologists travel to classrooms there.

We also did years of private OT and I think it was kind of a waste except when she was working on very specific skills, like handwriting or tying his shoes. Having her input on play activities we could do at home was helpful when he was young, too.

DS has grownup so much. I don't know what is due to therapy and what is just due to natural development. This week is our spring break and I took him to a children's play museum. He played with unfamiliar kids for hours! He was still immature and quirky for a 9 year old, but a couple years ago he would have just walked away from any play area when another kid came along. A couple years before that we would have just left the museum altogether because he would have hated the crowds and noise. He's really come a long way.

[Anonymous]

Anonymous wrote:Your child is also really young. Many kids with very mild ASD don't get diagnosed until much older when the social deficits become clear.

So if you are treating the symptoms with social groups, speech, OT...how would the course of therapy differ with the diagnosis?

[Anonymous]

Anonymous wrote:Your kid sounds like mine at that age, and this is basically the diagnosis he has now at age 9 from his speech therapist (I think they called it semantic pragmatic disorder). I told his psychologist I wasn't interested in an ADOS at this time because the distinction between autism and "social communication disorder" in the DSM is irrelevant (for DS, at this point) because it won't change any services we seek right now.

My son's biggest challenges have been his difficulties with pragmatic language, overall slow language processing, social anxiety, and, frankly, his low average IQ. The IQ matters because we ended up putting him in a small private which has been fantastic for supporting his social and emotional growth, but most of the kids are really smart with these zippy little brains, and my kid is not like that. But we're making it work with the support of the school. Having the continuity of the same kids in his small class each year has been great, and this year for the first time he has a true best friend and a consistent pack of buddies at recess and lunch. He is also a lot more confident and less anxious.

The most useful other things we have done include 1) holding him back a year for K, 2) long term OT group focused on "Social Thinking" 3) a private speech therapist twice a week for years who also uses the "Social Thinking" stuff and sees him in his classroom. But I am not from DC area so I don't know if private speech pathologists travel to classrooms there.

We also did years of private OT and I think it was kind of a waste except when she was working on very specific skills, like handwriting or tying his shoes. Having her input on play activities we could do at home was helpful when he was young, too.

DS has grownup so much. I don't know what is due to therapy and what is just due to natural development. This week is our spring break and I took him to a children's play museum. He played with unfamiliar kids for hours! He was still immature and quirky for a 9 year old, but a couple years ago he would have just walked away from any play area when another kid came along. A couple years before that we would have just left the museum altogether because he would have hated the crowds and noise. He's really come a long way.

This is wonderful to hear...he certainly did make a lot of progress! I appreciate this, along with the advice you included