Semantic Pragmatic Disorder

[Handywoman]

Has anyone had this dx given to their dc?

With regard to dd2 we have been on this diagnostic merry-go-round now for four years (half of her life!). If this round of assessments is negative for ASD (NHS appt for ADOS expected around Xmas/New Year 2014) then I will press our private SaLT to change her diagnosis of 'specific language difficulties' to something more label-sounding(! Yes, I am looking for a label!!!). Semantic Pragmatic Disorder sums dd2 up beautifully, because this is where the deficits lie. The more SaLT we do, the more these areas stand out, and also the more impaired she seems when these areas are probed.

I am so weary of the dx process, now. All the uncertainty and waiting are having an effect on the ability to enjoy my bright and lovely child and interact with my friends, who can't see what the problem is and often, I suspect, feel I am making the whole thing up/looking for problems. It is very isolating. I need to have an endpoint for the sake of all of our family.

My own preference is for a diagnosis of ASD for her (based purely on the fact that the interventions will be the same just potentially easier to procure, and a dx of SPD will only flummox dd2's school and the SaLT report will just sit gathering dust in the SENCO's office). But I realize a dx of ASD is beyond my control (and that of our private SaLT, who believes ASD is the right diagnosis).

Has anyone received this dx for their dc? What (if any) has been the effect of this dx?

I suspect not many will reply to this, SPD doesn't seem to be commonly diagnosed at all. But I live in hope!! And might bump this from time to time, in the hope of catching a passer-by.

Thanks!

What SALT assessments have been done? In much the same situation with ds2.

Ds has been diagnosed with SPD alongside other things. I'm about to do the school run but wil pop back on later

Oh thanks both! Last SaLT assesment Sept '12 and ongoing fortnightly therapy (private).

sorry, KeepOn you said what assessments!! Ahem:

Assessment of Comprehension and Expression (ACE)
Canterbury and Thanet Test of Verbal Reasoning (C&T)
subtests from Test of Auditory Processing Skills (TAPS-3)

(end Sept 2012)

I thought they had decided that SPD was in fact Asd!

I may have dreamt that though

When Dd3 got her diagnosis the psychiatrist was going to diagnose her with Atypical Autism but decided to give her and Asd diagnosis because no one knows what Atypical Autism is!

I wonder if you will have the same issue with semantic pragmatic disorder.
Fwiw Dd3 has issues with these areas of her language and that is written in to her SALT assessment report.

I am in the process of trying to get individual reports to describe Dd3's issues more precisely ready for secondary school as I am finding that the Asd diagnosis is not precise enough for teachers to actually understand what her issues are.

It is a minefield, I really dont envy you.

Good luck

Ineedmore (re: SPD is in fact ASD) I don't know if the jury is in or out, or perhaps in in some areas and out in others! This may be something I need to discuss with SLT and Paed when the time comes. Like I say, I just need a label so the merry-go-round will stop (then I can jump onto the next merry-go-round ie securing the right provision in school).

Thats interesting because we were told Ds was potentially going to be diagnosed with Atypical autism which we didnt agree with as he was only 3 at the time and since then he has been diagnosed as having Semantic Pragmatic disorder

He had a 2 hour assessment after years of us being messed around with silly 30 min assessments, but to be honest i think they gained more info from just talking and playing with him.

The first diagnosis came from private S&lt which backed NHS into doing proper assessments and even though they couldnt do exactly the same tests they got the same picture so that was that!

Ds does have lots of austistic traits and sensory issues so i can see that the 2 would seem very similar but i'm glad we didnt accept Autism when he was 3 because i was sure they were wrong. I still think they might diagnose him with ASD when he is older but for now we accept SPD.

As for provision, i dont think it makes much difference in our area. We get very little thrown our way.

Ds has been at school for a year and couldnt tell me a single topic that he has covered but apparently thats fine

I'm about to go into battle mode yet again!

I agree handy I would have been happy with any of the labels that were discussed for Dd3 (except naughty).

She has benefitted hugely from having her Asd label. Not because of all the support that suddenly appeared but because we have joined a support group which is amazing and because she has embraced her quirks and is happy in her own skin instead of trying to be something that she is not.

Good luck

ArthurP do you not feel or have you been told SPD is not a valid or discrete dx?

squeelyb did your ds have an ADOS? Do you still he is not on the spectrum?

do you still FEEL he is not on the spectrum, rather

They havent done the ADOS but we saw the first paed when DS was 17 months old as he couldnt roll, crawl or sit up. He was diagnosed with mild CP by a neuro that day but he seemed more interested in the fact that he didnt communicate so we were referred to an autism paed who we have been seeing for 3 years every 6 months.

We were sure it wasnt ASD because he loves people which is why it was ruled out by us. His language development pattern has followed exactly what they would expect from a child with ASD so have some of his behaviours but he does try and communicate, its just all wrong and very basic!

He is 5 now and still cant have a 2 way chat or describe anything he see's but he can say what he wants to say. As for learning at school, he hasnt retained anything they have taught him so i'm guessing at some point he will be diagnosed as cognitively impaired or the dreaded GDD will be stuck back on his diagnosis which i feel is a total cop out diagnosis and will give the school a free run on lowering expectations even more and take the pressure off of them

We are thinking of taking him for an I can assessment next year but are dealing with his sensory issues at the moment as they are impacting on everything including my lack of sleep thanks to his constant rocking and bouncing all through the night!

The SPD diagnosis has meant that he has 4 interventions a day with a 1:1 but not a lot else.

What sort of daily intervention is he having, if you don't mind me asking? Sounds like there are big sensory issues too.

Its all based on his phonics learning even though they are supposed to be doing black sheep with him and reinforcing concepts as stated in his IEP.

They dont give me much info other than saying he doesnt stand out!

Do you think an ICAN assessment will tell you more than you already know? It is interesting you are still seeing Autism Paed every six months. Are they offering re-assessment? I wish we could have regular appts with our Paed. The system is so overwhelmed it seems you wait the best part of 2yrs for assessment then it all comes down to a 2hr CDAC clinic. The prospect of coming away without a diagnosis fills me with dread, but I know it is possible.

I wonder if this is the label that would fit DD2 if I can get anyone to notice that she's got something going on at all

2 examples today alone:

Just now - DD2 had an accident earlier in her knickers. We were out and all the pharmacy had was pull-ups. DD2 is getting ready for bed and said 'where do I put this pull-up?' DH said 'In the bin'. She replied 'No! It's plain, it's plain!!!'

She meant that the pull-up was clean.

At dinner, she told DH about 'Green Club'. DH said 'what's Green Club?'. She said 'it's where you plant things that the person who helps you tells you what to do and where to put them.'

We dont really think I can will offer us anything that we dont already know but what we do hope is that it will give us a bit more clout within the school to push for more support and how they do it.

They really do not understand DS and how he learns. At the moment he is being taught in the same way as all of the other children but he is already very behind. We have seen him learn things much faster when we had portage for 18 months. It wasnt the conventional way of teaching but it worked for DS which shows he can learn if things are presented differently and thats what we want.

We are grasping at straws tbh but neither of us fully understood the huge implications of a language disorder and the knock on effects socially and emotionally on DS. Throw in the CP and the sensory issues and if feels very overwhelming at times. Some days are perfectly normalish aswell so its not all bad

If he gets a diagnosis of ASD in the future it wont be a shock but atm we still think that his language impacts on everything else. We could be wrong which is maybe why he is monitored closely by the paed.

Lougle when I typed the OP I wondered whether it would strike a cord with you and dd2.

Funny that Semantic Pragmatic disorder was the first thing I hit upon in my Google mission when dd2 was 3yo before even enlisting help from SLT. Can't believe I am considering coming back full circle. Am working on the assumption that SLTcan diagnose it if Paed won't. Don't know if that's true or not.

We have literally just had the following convo. dd2 about to have a wash. I ask her if she would like me to wash her. She said 'I'll do it', then said I could wash her hands. I stood there watching while she washed her face. So when she said I could wash her hands I said, jokingly, 'good, I like to have a job to do' ....

dd2: why?
me: because it makes me feel useful.
dd2: why does it make you feel useful?
me: because helping someone is a useful thing
dd2 (genuinely confused): but why is it useful?
Repeat ad nauseam.... With me trying to explain isong different words. Eventually:
dd2: I don't get it

Yes, I know what you mean.

It does have it's fluffy moments though. The other day DD2 came running in from the garden, having hurt her chest trying to climb on something. She was crying and said 'Mummy I think I've broken my heart '

I didn't know whether to laugh or cry with her

The odd thing is, that DD2 'gets' grammatical terms. She asked me yesterday whether her name had a 'split digraph' in it and often talks about them.

She's obsessed, currently, with homophones and randomly announces that a certain word is a homophone. For instance, she'll be eating dinner and say 'ooh Mummy, meat is a homophone...'

She got really cross with a book because the sentence she was reading didn't make sense. It said '"point your toes and line up your tail with your nose", Angelina said, patiently. DD2 was insistent that it didn't make sense, until I finally said 'DD2, it's an adverb.' She listened while I explained what an adverb is, and then she was quite happy with it. Until that point, she couldn't accept that the sentence could make sense.

She's a mystery to me.

Tee hee

Oh absolutely... dd2 can tell you all about nouns, adverbs, compound words. But cannot describe a cat!

It was actually a missing apostrophe