semantic pragmatic disorder .... any previous experiences?

[joburg]

i post my message again here as another mom recommended it.

does anybody have experience with this or heard of it? my daughter shows all the signs but nobody, including the teacher seems to make the difference between a real autistic case and an autistic spectrum disorder (which is by far a completely different thing). i post here the link to a brief description of it: www.spdsupport.org.uk/
some symptoms (listed on the website):

Inappropriate eye contact/facial expression
Speech is fluent but lacks content and direction
Explanations and answers to questions are not specific
Comprehension is poor, particularly of abstract concepts and understanding can be literal
Interactive and imaginative play is poorly developed and there is difficulty in recognising and expressing emotion
There is difficulty following the "unwritten" rules of conversation such as turn-taking, appropriateness and non-verbal language
Weak temporal concepts cause confusion over school routine and chronological events
Auditory memory is poor but rote learning is often a strength
There are poor attention skills, erratic motivation and distractibility
They rarely ask for help or seek clarification
Behaviour can be described as naive or eccentric
Mechanical reading skills are good but there is limited understanding
Self esteem is low (this is not a criteria for SPD but is often an unfortunate consequence)
Can appear rude, arrogant, gauche

any of you, moms, know anything about it?

more details on this thread in behaviour/development www.mumsnet.com/Talk/behaviour_development/726983-semantic-pragmatic-disorder-please-help

the OP is based in Dubai, and the school seem to be underestimating the OP's DD's difficulties as she doesn't fit their stereotype of a child with autism.

thank you TotalChaos, and if you ever think of giving up your username, let me know, please, and i will take it instead, it fits me perfectly

Hi Joburg,
Can't really help that much, but I've been told unofficially by my DD's speech therapist that if she "had" to pin DD down, she would say that she had SPD. She (the therapist) wrote her thesis on SPD, apparently, although of course as SALT she's not qualified to diagnose. DD has a language disorder with many of the symptoms you mention: inappropriate eye contact, very verbal but speech often inappropriate, non-specific response to questions, very poor understanding etc. etc. I have always been told by everyone dealing with her that she is NOT autistic (not that I'd have a problem if she is, IYSWIM, but she's not!)
HOWEVER, we live in France, and here the diagnosis of "autism" is only given for what in the UK might be called classic autism. DD is diagnosed "TED" which roughly translates as pervasive developmental delay, but isn't used in quite the same way that the diagnosis PDD would be used in the UK...What I'm trying to say is that quite often these labels aren't terribly helpful. What you really need, if you can get it, is help at school and speech therapy and possibly occupational therapy. We are fortunate in that here in France help is available without a specific diagnosis. I don't know what the situation is in Dubai.
So, not much useful info. but I can see your frustration! Do you have a school psychologist / ed psychologist who can assess your daughter's need for help in school (quite aside from any developmental issues). Either way, teacher is hardly qualified to decide on their own, surely?!

BriochreDoree, if she had to pin your daughter down? what does that mean? diagnosing? and please, don't talk about classic autism, it doesn't seem to be your case, it's such a grose missunderstanding of the concept and i already fought about it with the teacher and even the therapist! no, autism and autistic spectrum disorders are not one and the same thing. and i am amazed that so many ppl involved in the education/therapy system don't seem to be able to distinguish between them. i'm not a psycholog myself but just googling and reading articles on the net (screening and choosing carefully which ones you pay attention to is necessary of course) give me a bit of understanding of the different disorders and problems we might face.

What do you mean when you say Autism and autistic spectrum disorders are different. Autism is a social and communciation disorder which can present itself as high or low functioning or somewhere in the middle, hence why its referred to as a spectrum. As far as I know classic autism tends to be at the lower end of the spectrum whereas high functioning autism (HFA) and Aspergers are at the higher end of the spectrum

paranoid, i'm talking here about SPD, please take a look at the site that describes the symptoms i'm talking about. As for the other differences, just go on and google them. Surfing the net does not always give us the best information, there are so many ppl just talking without having much information, i agree. In my case, my girl has no obvious autistic tendencies, this is why her teacher is so negative towards all my efforts to help her. She is a very extrovert child, she can communicate most of the time, even though she looses it many times (seems to float in a different world from time to time). But the 'autistic spectrum' tendencies pin-pointed by a psycholog were like (things i would have never thought about): playing the same game over and over again for days in a raw, without having a desire to experiment smth else. Placing her shoes in the same corner of the hall without anybody asking her to do so (endless repetition). Difficulties with changing games in the playground and getting frustrated if the other kids would want to move on to a different game, resulting inevitably in the other kids going away and preffering to play with smb else and so on .... as for the other semantic-pragmatic symptoms i posted already, hope you can find them at the beginning at this post.

We had a link a while back to an article about how SPD used to be considered outside the ASD spectrum but now is considered to be on it.
The article pointed out that some parents are willing to accept a diagnosis so long as it doesn't contain the "autis....." word!

Wonder if anyone remembers how to dig it out.

Hi Joburg

My ds has "pragmatic difficulties" and will be assessed for Aspergers when he is 8 years old (He is currently 4). He clearly has an autistic spectrum disorder of some sort. From what I can gather the "label" that the health professionals may or may not give him would vary depending on where we live. I have come to the conclusion that when we get to that point I'm going to push for whatever option gets him the best education, which at the moment looks like mainstream but with additional funded support.

BTW have a friend with a ds with similar difficulties who like your dd is a complete extrovert. He doesn't understand social cues so can be over friendly.

whatever i read, wherever i go on the net, the most important thing they would emphasize is that we should not wait, it's never too early to help the child (reason why i am so impacient to find out more even if the school is postponing me, telling me everything is just fine). Nyrrem why would you wait for so long? Lingle, there is nothing more than a smile i can give in respone to this ! I don't care how they call my kid's problem as long as i can find an answer to it (if spd is inside or outside a certain spectrum, if the name of it sounds compromising or comic or whatever, this is not my concern right now. my concern is, can i help my kid?! everything else, all the other concerns and theories are beyond my understanding!!!)

I have dug out the article I found most useful when we realised that ds was having difficulties. It is by a woman called Margo Sharp who worked in a unit for children with Semantic Pragmatic difficulties. www.hyperlexia.org/sp1.html

"I don't care how they call my kid's problem as long as i can find an answer to it "

OK. So - I expect you will check out the "system" in Dubai in more detail, bypassing your child's teacher if necessary. Have you been to the doctor?

Hi Joburg,
The primary health trust where we live has a policy of not diagnosing Aspergers until a child is 8. They argue that a lot can change in the early years. That is not to say that my ds is not receiving the help he needs. There is currently lots of funding for children with difficulties at the preschool age here so he has a paeditrician, speech therapist, occupational therapist, physiotherapist, podiatrist, primary mental health worker and will soon have his first appointment with the educational psychologist. He also has problems with his eyes, so also sees a paediatric optician, opthalmologist and visual impairment teaching advisor. We average one appointment a week and lots of exercises/homework etc. It makes my head spin.

I think that I will have to fight his corner more once he starts school especially if he doesn't get a statement of educational need and the funding that goes with it. We shall see....

Nyrrem, i do hope you get over all the problems! Your head will be fine when all this is over will stop spinning and getting the rest which it deserves! Insh'allah as we say over here! I still didn't manage to read properly the article you sent but i will and thank you!
Lingle, we got one proper assesment for our daughter and an oppinion (from a psycholog who decided we should come back for one more assesment later on because our daughter was only(!) 5 years old). TotalChaos was so kind to post the link of the initial thread i posted before discovering the 'special needs' section on this site. Thank you again, TotalChaos.

Hmm, can the psycholog not talk to your school? Are you going to be left completely on your own to help her?

If you are completely on your own, I guess we could tell you some of the most common suggestions and "interventions" that my child gets (I'm only including ones that might be relevant to you). These would include:

• a visual timetable to help her deal with transitions from one thing to another
• a visual representation of "time remaining" which is basically a timer which marks time remaining in red - it's called a "timetimer".
• using a calendar strictly every night, crossing off each day and drawing or using stickers to show future events

There is also a book by teh Hanen Foundation on helping ASD kids improve social skills - do you want me to dig out a link?

Nyrrem, thank you for the link (although it made it even more clear that we DO have a problem, despite our teacher's oppininon that all is fine with our daughter ) Lingle, thank you for the tips, we tried some of them already but she doesn't seem to be able to follow any of those charts. Routines? Never worked, not even once in a while remebering those things she is supposed to do. Things that happened yesterday, she sees them as 'when i was a baby' most of the times. She seems to float many times in a paralel world and that scares the hell out of me. She learns things by heart, but for instance the simple routine of 5 days school - 2 days weekend she just can't get it, even though i sit with her every single day discussing about it, what we did yesterday, what we will do tmrw (i never go further than that because it's useless).
On the other hand, how do you moms handle hyperactivity, if this is the case? I am soon going mad! I can't seem to be able to get used to it! The constant fidgeting, climbing, endless talking and noise making for the sake of noise, the constant coming and going in the middle of each single activity .... please help! Repeating every single sentence 2-3 times (from my part) because she looses it after the first 2-3 words! I'm in need of therapy myself soon

bump! still need help

I am not completely aware of what SPD is but my DS has a dx of atypical autism, SPD, ODD and Anxiety disorder!!! The SALT diagnosed SPD for DS about a year ago now. DS attends a private specialist autisim school who told me that SPD was an autistic spectrum disorder and DS has 2 hours of SALT a week.