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DS (6) Undergoing assessment for possible Aspergers - No communication from school

(34 Posts)
RustyParker Mon 20-Jan-14 15:35:10

Hi there, I'll try and be brief otherwise it'll be a long OP but feel free to ask any questions if I miss anything important out, thanks.

DS (6) started YR at 4 years old. Did not attend attached Nursery so was the only new pupil starting YR.

At first parents evening his teacher suggested he may have autism (yes, just came out with it!) due to him sitting under a table when seeming anxious, only having one friend, not joining in on group play, becoming upset if he didn't understand an instruction, being obsessed with buses and trains. No problems academically, in fact top of the class. She felt there wasn't enough to refer to SENCO so if we "were worried" to go to our GP.

Our GP said it was ridiculous and of course the teacher could have referred to SENCO but she referred us to a Paediatrician.

After several sessions with the paediatrician with her talking to us, observing and talking to DS she felt that he might be borderline Aspergers but that she needed more information from outside agencies i.e. SALT and especially needed to know the actual concerns school have. She has written to school several times and has received no response.

I've spoken to DS's Y1 teacher and Headmistress directly to ask what their concerns are but I'm told "well, there aren't any really and he isn't struggling in class".

DS had an assessment with SALT regarding the adult phrases and they assessed that his understanding is that of a 9 year old, happy that he uses words in context and so has been discharged.

I then receive a phonecall several months later from SALT just giving me an update on their recent classroom observation (!). They tell me that DS has been doing work on expressing his emotions and will continue to be monitored. No informed me that this assessment will be taking place and school did not advise either has extra work is being done with him. I feel that we should have been made aware so maybe we can expand on that or support it at home.

SALT have recommended that DS be referred to an Educational Psychologist so the paediatrician is making a referal to them. What do Educational Psychologists do?

I am also a School Governor and saw on a report that DS is on SA+ (School Action Plus). I do not know what this is and I haven't been informed either. Does this mean the school should have an IEP? If so, should I have had a copy or it been discussed with me?

I am going to ask his current teacher for a meeting and ask that the school's SENCO attends. It would be really helpful to know what I should have been advised about at this point regarding my DS being on SA+, any IEP, how concerns should be communicated. Also, any advice would be so gratefully received, thank you..

RustyParker Mon 20-Jan-14 15:42:37

Also, some other assessments have had DS come out as having a level of understanding of a 10 / 11 year old but this isn't necessarily reflected in his pupil assessment scores although he is on paper ahead of were he is expected to be and the SALT suggested that he isn't being stretched in class.

DS is such a lovely, kind and affectionate boy and I'm so proud of him. I just want him to be reaching his own potential so I'm not hung up on age levels and expectations, it's much more important to me for him to be happy and confident smile

He has come such a long way and with a bit of our support and patience he has overcome his fear of hand driers and sirens and doesn't bat an eyelid at them now. He has a lovely circle of friends (boys and girls) although his one friend in YR is still his best friend. My DSis recently passed away and he has handled everything so so well: he has been talking about her when he is sad or when he remembers something happy so he has been expressing his emotions and seems comfortable doing that.

Ineedmorepatience Mon 20-Jan-14 15:46:00

Oh dear!! They are really bad communicators arent they!!

I would be putting everything in writing and following up any meetings with either a summary by email or letter.

You have every right to be informed about outside agencies seeing your son in school and you should have been informed that he was on the code of practice (special needs register).

I would start applying a bit of pressure for the sake of your Ds.

Good lucksmile

RustyParker Mon 20-Jan-14 15:57:03

Thanks for replying Ineed Yes, I think putting everything in writing is the way to go and I will request the meeting with the teacher and SENCO by email and follow through from there.

I am so frustrated by the school's response. They threw this bombshell at us then stepped back leaving us to get on with it really. I was very annoyed that I hadn't even been informed that DS was on the SEN register and when I approached the Headmistress after the meeting she told me that whenever outside agencies are involved then the child automatically goes on the register regardless of lack of diagnosis. Is that right?

Now things to have moved on far more than I realised and was led to believe I will definitely be applying pressure.

PolterGoose Mon 20-Jan-14 16:02:47

Ds's school failed to send requested information to the paed too, however an EP had already been in so school observations had been done.

Your ds's school should be doing IEPs which you (and ds is he's able) should be involved in setting and reviewing. If he's on SA+ they've clearly identified a need for outside advice. All seems very off to me.

PolterGoose Mon 20-Jan-14 16:04:30

SA+ isn't merely about there being external agencies involved, it is supposed to be where a child has needs that require more specialist external advice (that school then listen to and apply).

BackforGood Mon 20-Jan-14 16:18:33

Yes, you should know if he's on the Code of Practice / SEN Register.
Yes you should have copies of his IEP
Yes, if he's on SA+ you should have been involved in review meetings / target setting (in an ideal world, on SA too, but due to practicalities that isn't always realistic).
Yes you should have been told if people were coming in to see him
Yes you should know what additional support he has been / will be getting from the school (may be as expressed on the IEP)
Yes, they should have a record / folder with all the information in around both strategies tried / being used and letters received, replies sent, etc.

I would ask Paed (or their secretary?) for specific dates when they asked for information and then ask the school why they have ignored it.
The fact they have no concerns, is just as relevant to the Paed building the whole picture as if they did have concerns - that i no reason to ignore the letter.

This school have failed to communicate with you effectively from the outset. It all stinks frankly, they have and are failing him and by turn you.

Also they are failing to meet his needs in school now by not recognising his additional needs fully or even being able to.

Your DS has been put onto School Action Plus because outside agencies have been involved ie the SALT and the paediatrician (and what Poltergoose wrote as well). No diagnosis is necessary. Unfortunately some schools do not listen to external advice and they are under no obligation to take notice either.

I would also be questioning the paed why your Ds may be borderline AS; it seems that they cannot make a firm decision either way.

There should be an IEP (not known as Individual Empty Promise however as they can be very poor) and this should be done termly and with you present before it is drawn up. You should also be given a copy of this paper.

EP will make recommendations re educational needs; this person will not be able to diagnose (that's down to the paediatrician).

I would also now seriously consider applying for a Statement from the LEA if you feel DS's needs are not being met on SA plus. Doing that will also kick the school's butt a lot as well.

You will learn if you have not already done so that you are your son's best - and only - advocate here.

I would also suggest you look at IPSEA's website as it is very helpful generally speaking www.ipsea.org.uk, keep posting here and arm yourself too with a copy of the SEN Code of Practice.

RustyParker Mon 20-Jan-14 17:20:19

Wow, I am very angry with the school now. How can they not inform me of any of this? I'm guessing it could be a money issue too but my God, they really haven't told us anything.

The school is in a very deprived area and although that in itself isn't a problem, the school do have a high number of SEN pupils but sadly, not many engaged parents so I don't suppose they have been challenged much with regards to pupil's progress and no-one chasing if the paperwork is in place.

Thank you everyone for your invaluable advice. I feel much better armed to tackle the school now. I will contact the Paediatrician's secretary tomorrow for dates of letters to the school and get an update of where they are with correspondence from SALT and the referral to the Ed Psych. Then I'll email DS's teacher and the school's SENCO to request a meeting.

The Paed has told us that so far she suspects borderline AS due to what we have told her and observing DS herself, examples of his drawings / writing (obsessive and quite detailed) but has stressed that it by no means a diagnosis and she would not be willing to persue making one until all assessments have been completed by SALT, Ed Psych, OT etc. and if we agree to proceed to diagnosis. She has only mentioned AS because we bought it up with her at our first meeting otherwise she said she would not have raised the term with us so early on.

Can anyone tell me how a paed goes about diagnosising AS please? I know she will also use the evidence supplied by other agencies but what will she do to diagnose?

I will get up to speed on the code of practice and thank you for keeping this avenue open to me to ask questions thanks

IEP = Individual Empty Promise sad

PolterGoose Mon 20-Jan-14 17:35:06

This blog is a really good starting place.

My ds's assessment started with him seeing the paed's registrar who did a standard health check and listened to me explain ds's difficulties and oddities, he didn't think ds had AS so I explained how I felt he fitted the criteria and he consulted the consultant and agreed to refer to SALT and OT, once those assessments were done, ds was invited for an ADOS assessment, which is one of the commonly used diagnostic tools and got his dx.

RustyParker Mon 20-Jan-14 17:41:00

Thanks PolterGoose will have a read and a Google of ADOS. Is the diagnostic procedure quite intense? How did your DS find it? I know it's worth it to get the help he needs/might need but it's just test after test..

RustyParker Mon 20-Jan-14 17:43:22

Oh, the paed is also going to refer DS to CAHMS so I will get an update on where that is too tomorrow

PolterGoose Mon 20-Jan-14 17:47:40

None of it was intense, all the professionals, except the original registrar, were brilliant with ds. OT was a revelation, but provision varies hugely and services are very inconsistent across the UK.

RustyParker Mon 20-Jan-14 17:52:45

That's good to know PolterGoose A quick google suggests it's play and observational based (?) so that's more reassuring than what I was imagining (question after question or task after task).

Thanks again!

PolterGoose Mon 20-Jan-14 18:25:04

Yes, ADOS was very playful, I didn't really understand what was being done, there was some stuff with pictures, some toys, something with a balloon, chatting.

SALT was the most arduous, she'd assumed he would be at a lower level I think so hadn't bought the right stuff, so the assessment was quick and a bit tedious. Ds just wanted to tell her about Neo Shifters grin

OT was fantastic, very active, looked at how he moved, assessed fine and gross motor skills and a sensory assessment.

RustyParker Mon 20-Jan-14 19:57:41

Yes, SALT has been a slog too! Aw, bless your DS re: Neo Shifters smile

DS had an OT assessment but it mainly focused on how he holds his pen and general dexterity - I bought some plastic blob type things to put on the pencil where his grip is which seem to be helping. He was copying diagrams from a book during the assessment and scored quite highly in that so it's just building up his strength and learning to use the right muscles in his hands during OT sessions now.

bialystockandbloom Mon 20-Jan-14 20:13:10

As everyone else has said, this is disgraceful behaviour from the school, and it must end now - though you sound brilliantly assertive and switched-on so no need for any of us to repeat that grin (And if you do have to come back to this board you sound like you'll fit right in wink)

Haven't got huge amount more to add, but just to reiterate that Ed Psych/OT/CAHMS etc cannot diagnose - this has to be done by a paed (usually developmental one, possibly in conjunction with SALT) but is not the remit of school. EP etc cannot do the ADOS, which is as you know the diagnostic tool.

Don't let the school have a single meeting/assessment again without your knowledge and permission. Arrange to meet with the senco asap. Good luck.

RustyParker Mon 20-Jan-14 20:39:01

Thanks blalystockandbloom I like to think (hope!) I'll be right at home with all you fabulous women and fierce mums! grin thanks

I really can't fathom how the school could even think to hold a meeting or prepare a report about my DS without even thinking of involving us. What is going through their minds? Especially with me being a parent governor, they KNOW how engaged I am (not that that should make a difference tbh).

My first focus is my DS obviously but hopefully I can help get a proper procedure in place to monitor any SEN needs for other pupils and their parents and although I'm quite a new governor I'm not afraid to cause a few ripples. Actually, I might call into the school office in the morning and ask if they have a copy of the SEN policy - should they have one? I know they don't have a G&T policy, they told me "just treat each child as an individual" hmm

I'm so on a mission to hold them to account now. Will definitely update and if I can, use all you wonderful people as a sounding board while I find my feet with all the guidelines?

Thank you to everyone who has taken the time to offer advice and encouragement thanks

AgnesDiPesto Mon 20-Jan-14 20:40:22

You can borrow free books from Cerebra charity lending library. Tony Attwood is what most people recommend to read about AS.

I agree with all that has been said but the likelihood is the SLT saw him because she was in school anyway - they come in and see all the children with communication needs on set days. So while you should have been told its unlikely she came just to see him. If there are lots of children with similar needs the school probably get 1-2 days a term SLT time. You can ask for a copy of your son's medical file from the NHS including the SLT notes and see what she has written.

RustyParker Mon 20-Jan-14 20:40:50

* should say "THEY treat each child as an individual"

RustyParker Mon 20-Jan-14 20:44:33

Will look into that, thanks Agnes

That makes sense about the SALT dedicating a certain amount of days at the school per term. I will make sure I ask to be informed of whenever she is due to visit and then, if she saw my DS.

Oh, that might be an idea to get Ds's medical file - thanks!

RustyParker Tue 21-Jan-14 12:26:50

Hi everyone, just a quick update...

Got a copy of the school's SEN policy from the school office this morning.

Spoke to the paedatrician's secretary and got the dates of the letters she wrote to school where they haven't repsonded and also got our next appointment bought forward to February.

Have emailed the schools SENCO requesting a meeting with her and DS's teacher. I have detailed everything in the email: the non-response to requests from the paed for info, disappointment in the way their concerns were initially raised with us (and for the teacher throwing a autism diagnosis out there!), the lack of involvement re: any IEP in place and of not being informed of inclusion on SEN register and SA+ I have requested that I am informed of any visits, meetings or assessments either interally or by outside agencies regarding DS in the future.

Thanks again for all your advice wine

PolterGoose Tue 21-Jan-14 20:21:07

Well done you, you definitely deserve wine

RustyParker Wed 22-Jan-14 11:51:11

Thanks PolterGoose don't mind if I do!

ohdofeckorf Thu 23-Jan-14 11:00:54

Well done Rusty, We had the same with DS who has since been diagnosed with Asperger's (even down to a Dx from the HT!) with hindsight I now realize that they were passing all responsibilities on to me....even though I didn't have any concerns (ok maybe a few niggles but nothing I would class as major concerns) until the HT said what he did.

It did make me wonder years on just how many Dc in the school were on the SEN register and the parents weren't aware hmm. Just out of curiosity I had a chat about SA and SA+ with another mother when I found out 4 months into last year that my DS had been placed in a class where the DC ALL had varying special needs.....therefore her Dd was one of them and she hadn't got a clue what I was talking about????

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