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

[RustyParker]

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..

Sorry about the delay Rusty.

How did the meeting go?

I knew NOTHING about anything a few years ago, now I can sit in a meeting and know when they are spouting crap.

My Ds is doing a bit better now and seems a little bit happier, but he still isn't getting the costly support he needs and is being left to coast when he is capable of doing a lot more...how degrading that must feel?

I learned very early on that what I had to say made no difference to the school at all, the communication is the same TBH and we are purely humored during our countless meetings regarding his underachieving, including being blamed for various reasons . If I had a £ for every time lack of funding was mentioned I could of paid for everything myself.

Ds'S Dx has been helpful in getting appointments with other professionals to whom I have subtly mentioned his struggles at school and they have gone in to observe which has helped him no end but also me to get my message across from someone who has a bit of clout IYSWIM?

My Ds had tests with the EP and was found to be very bright, sadly this was seen by his HT as littlesquiffy has understanding so is pushed to the bottom of the list for any additional support requiring funding....but we already have another professional who is working on that

I think the Dx has benefited my Ds due to the changes at school TBH at one point he was so low and just cut himself off from us. Also it has helped us because now when we are being fobbed of we can refer to his Dx but most importantly we understand why he does what he does, instead of it being Ds does this and we just deal with it by doing that...If that makes any sense?

I'm pleased to hear littlesquiffy is happier but I agree, how demoralised must he feel at trying his best but with no support. I'm so sad to hear of your experience and for the school to blame you

It's interesting to hear how you have found getting a dx. I can see how it would help your DS to understand why he does things or see things a certain way so it makes sense to me.

Well, the meeting was useful and frustrating in equal measures. The officially have NO concerns! I asked why we were told by DS's teacher in YR that she had concerns which we should follow up. I even kept her informed of what our GP and the paed said and all the while she was nodding, like her suspicions were confirmed. The HT said she probably just informally highlighted her concerns so there were no surprises a few years later! They seemed to think it was us pushing for intervention and getting other agencies involved

We explained that the teacher told us she suspected a problem and we would be remiss if we did not follow that up. What did they expect us to do with that information? Jeez, Isn't that what caring, engaged parent do ffs?!

They did fax information from SENCO and DS's Y1 teacher in June 3013 but it would seem that didn't get to the paed. They've given me copies of everything in DS's file and copies to give to the paed but it's just copies of reports from the Communication Inclusion team, SALT and the paed - nothing from the school or plans / support they have in place.

I suppose it boils down to whether we have enough concerns to go ahead with a possible dx? Our concerns have never been major and any we had we've seemed to have resolved ourselves i.e. fear of hand driers. DS has widened his circle of friends and has friends outside of school too so his confidence has improved so much. The only concerns I still have is his literal thinking, repeating sentences until he gets a response and speaking up at school when he isn't sure about something and he can get anxious when something doesn't work out quite how he planned in his mind.

We've got a paed appointment early Feb so will discuss all this with her and try and work out where to go.

Grrrrrrrrrr

Now they have no concerns and he is on SA plus?. Does not add up at all. They are still failing him aren't they?. Some schools simply cannot or equally will not help any child who presents with clear additional needs in school. In such schools the child goes unnoticed and ignored.

I think you have more than enough concerns to really push ahead now to get a possible diagnosis.

As you have again already seen here from this school's attitude, you are his best - and only - advocate here.

In your situation I would also be applying to the LEA for a statement now whilst you still can (you will need to contact the Chief Education Officer at your LEA) as well as now looking at other schools.

I asked about the SA+ and they said he was on it because there were outside agencies involved so he will automatically go onto it.

The day of the meeting the SENCO who had never had an 1-2-1 with DS got him into her office for a chat...

The paed has said she would be happy to refer him for dx if we want but she would also be happier with more information from the school for proceeding. We can't win with the school it seems. I need to think about everything carefully and discuss with the paed at the appointment in a couple of weeks

Thanks for the info for applying for a statement. What do you mean whilst we still can? Can the school block us proceeding?

If you can afford it, it might be worth getting an independent Ed Psych to assess your DS, and s/he can make clear recommendations to school and you. Ed Psych can also address specific concerns you might have, and if you decide to apply for Statement his evidence would be useful.

There are also national guidelines on getting ASD diagnosed and supported, but an appt with the paed again seems to be quick enough. You might want to look up a pad who specialises in ASD or social communication disorders. And if it is looking bordeline, you might want to look up a NHS tertiary referral service, so you can ask your paed to refer to a specialist if they are having trouble with a diagnosis.

DIagnosis is a key to getting more help and resources; though if you feel there are not any issues and you don't need more help then you might not need to go and get a dx.

"Thanks for the info for applying for a statement. What do you mean whilst we still can? Can the school block us proceeding"

Statements will be replaced later this year with a personal education, health and care plan (EHCP). I would therefore apply for a Statement whilst they are still available.

No, school cannot block you proceeding with an application for a statement.

Thanks Hope One of the recommendations from SALT was for an Ed Psych to assess DS so I might speak to the paed about that next week.

Oh Attila I guess that's a new name = cut to funding senario then?

It seems as soon as experts start getting better at diagnosing and accepting there may be / are difficulties in our children that the funding gets slashed. The stories I'm hearing are so depressing.

Thanks again everyone. Will update you after the paed appointment next week.