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ASD (Social Communications Disorder / SPD) diagnosis

(9 Posts)
Floridagirl Mon 04-Jan-16 10:46:28

Hi all - I don't really know where to start with this so excuse me if it's a bit long and rambling!

When DS started in reception the teachers expressed some concerns, he was referred to the communications difficulties team at the LA who came and observed him and sent a report to school. DS is an only child and to be honest I don't have that much experience of other small children so to us he is just the way he is, I don't really notice anything different until he is in a group situation with other children if you know what I mean?

All then carried on fine, a few little issues but nothing major until he moved into Year 1, there is a massive difference between Year 1 and reception and he really struggled to adjust. He was obviously anxious and stressed and this manifested itself in lashing out (although more to objects but then another child might get caught in the cross fire of a building block being thrown etc). He was sent to see the headmaster probably 6 or 7 times in the first few weeks, we had a meeting and they put some strategies in place to help, and also asked for further support from the communications difficulties team. At this point I asked the GP to refer him to CAMHS - my thinking was that we might get more support etc for him.

He settled down at school, we had our appt at CAMHS and were given a questionnaire to complete (Aspergers Australia scale?) and one sent to school too. At the next appointment approx 3 months later we were given a diagnosis of ASD, and I was given a few websites etc for more info but that was it. A letter was sent to school confirming the diagnosis during the summer holidays, and here we are now in year 2. The letter just stated ASD, nothing about social communications disorder. When I looked on the National Autistic Society website the description of Semantic Pragmatic Disorder (SPD) absolutely fits him right down to the ground.

So my question really is what now? I have no idea what to do next. School are actually pretty good but they don't really seem to put anything in place or give additional help and support until he gets to crisis point if you see what I mean. I don't know what help he needs, or where to go to get it but at the moment I feel a bit like I am failing him by not doing anything.

Does anybody have any experience with this, or with social communications or SPD in particular?

zzzzz Mon 04-Jan-16 11:41:14

Semantic Pragmatic Disorder is I think an "old" don't and those children might better be described as having ASD now (ie that is what other children with those differences will be dx'd with now). Social communication difficulties are core to an ASD dx.

I agree that fire fighting is a silly strategy for accessing support. Are you UK based?

Floridagirl Mon 04-Jan-16 11:57:43

Hi - yes, am in the UK.

zzzzz Mon 04-Jan-16 12:20:25

School are actually pretty good but they don't really seem to put anything in place or give additional help and support until he gets to crisis point if you see what I mean.

This isn't good. They may be a fabulous school for nt children but not for your ds (yet!). That doesn't mean they can't learn to be brilliant.

It took me ages to understand that saying it wasn't good for ds wasn't saying "you are a bad teaCher/school/Other".

Who do you have involved supporting school to support him?

Does he have an iep?

Do school get extra funding?

Does he have any 1:1 TA time?

PolterGoose Mon 04-Jan-16 13:41:39

Message withdrawn at poster's request.

Floridagirl Tue 05-Jan-16 07:26:52

zzzzz - the school have involved the communications difficulties team from the LA. I think they are willing to give more support, they can loan resources, talk to the staff etc but I don't think school utilise them enough. He has a bit of an iep but I don't think it has changed at all since reception. School doesn't get any extra funding for him, but I have no idea whether they have asked for any. I have never been told that he gets any extra 1:1 time with a TA so would have to say no to that one too.

Polter - thanks, I will have a look on the council website. He was assessed at school by the comms difficulty team twice across 12 months, then one meeting with CAMHS, then they met at a panel to discuss. As far as I know, no involvement from OT or SALT. Is this what I should be asking for?

zzzzz Tue 05-Jan-16 11:26:01

So as a start why don't you ask for a meeting to discuss his iep? Ask for a copy and tell them you'd like an update as to where he is on each target. Use that document as a tool to inform and direct support.

It should be reviewed (annually?).

Ask also for a progress report. How much progress has he made in the core subjects over the last 12 months? See if you feel it is satisfactory. Sometimes this highlights difficulties and sometimes it shows adequate progress and allows you to relax.

Be open to the idea that school can work for him and that tweaking their approach or your expectation is possibly needed. Year 1/2 are very common years for gaps to show and particularly children with ASD to start needing more focused support, if these boards are anything to go by.

KeepOnKeepingOn1 Tue 05-Jan-16 11:58:22

Why did he settle down in school? The fact that you later say that the school are good but only put in place support when DS reaches crisis point suggests that the school have told you that he has settled down and that you have accepted this because he is no longer being sent to the HT all the time? Good enough support means never reaching crisis point. You may need to apply for an EHCP to get good enough support if the local offer is not enough.

It is surprising to see the different routes to diagnosis in different parts of the UK. In my area CAMHs are not involved at all. DS2 had years of SALT and OT input before he was diagnosed. He was diagnosed at GOSH HFA clinic and although they use psychologists they have a multi-displinary team that involves SALT and OT.

I confess that I could not understand why speech and language or occupational therapy could be of any use whatsoever and I needed to understand the criteria to request referral from my GP. Google and read around. smile

Floridagirl Thu 07-Jan-16 09:41:21

zzzzz thanks - have just had another look at the copy of the IEP I was given at parents evening, it does say it has a review date of Feb 2016 so i will ask for a meeting to discuss. I think they may well have been reviewing it but not necessarily with me. Will also say that I want to discuss progress etc (bizarrely, what we were told he was achieving at parents evening isn't what came home on the end of term update before Christmas). I know his biggest issue is writing - they do something called "the Big Write" once a week which he hates, he told me this morning he hates school because he has to do the big write and he doesn't know what to put.

KeepOn I think you are spot on - I have accepted that he has settled down because I am no longer getting twice weekly calls about him having to see the HT! I have wondered about asking for SALT referral as he has a way of talking that people often comment on. He has no local accent except on a couple of words, and people say he sounds "posh" for lack of a better way to put it (and trust me, we are not posh!).

I will definitely do some more googling but if anybody knows any starting points for me I would be grateful.

Thanks for your help - I don't really know anyone in RL who has any experience of this.

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