Possible ASD and problems with school. (long-sorry!)

[Tiggiwinkle]

I posted a few months ago after my DS5 had been assessed by paed and she had mentioned that he could possibly have an ASD. She referred him to to psychology team, but we had a crisis before he had been seen. Towards the end of term, his anxiety level increased dramatically and he suffered all sorts of fears, some based in reality and others completely bizarre.
The worst effect was that he stopped eating completely-initially he said he was afraid of choking but later seemed to think the food was contaminated in some way if it had the slightest mark on it-or even if it didnt!
He was also saying things like he wanted to be 3 again (he is 5-will be 6 in Feb) because he did not want to get old and die.All very distressing.
This started the week before the end of term and continued over Christmas. He gradually started improving and I managed to get him seen urgently by the psychologist last week. I am seeing her again tomorrow and she is going to see him in school on Thursday.
My problem is with the school. He is in year 1 and has never really settled since the summer holidays.
I felt they were not taking the extent of his problems on board, seeming more exasperated than sympathetic, and made an appointment to see the head teacher this morning.
He was very defensive. When I explained that my DS finds school very stressful and the 2 periods of acute anxiety have both occurred at the end of the school term, he implied that it could be the prospect of being at home for the holidays that was upsetting him!. This is plainly absurd as DS starts getting anxious about school on a Sunday evening. When he gets up on a weekend morning and realises there is no school, his delight is plain to see! He has particular problems with going into assembly and especially the "music" assembly and also has issues with using the toilets there.
None the less I am now very anxious as to the picture the school will give the psychologist when she visits. I caanot understand his attitude as I have had children at the school for 15 years-they have all done extremely well and our relations with the school have always been good.
Anyone have any similar problems or any advice on how to deal with them? I feel so demoralised and cant help feeling that he was implying it is all my fault (although I know it isnt!)

If the psychologist is ASD savvy she will be very familiar with this sort of problem. It is very common for schools to say "well he's OK here" not realising that they are bottling it all up and then letting rip at home- anyone with any experience/knowledge of ASD will be familiar with this. Getting schools to understand this is an entirely different issue- can you talk to the psychologist before she goes in and talk about this- I suspect you will find her sympathetic.

Toiletting etc is a big problem for ASD kids as well- maybe ask the psychologist to ask whether your son can use the disabled toilets- lots of mainstream schools do this for their ASD kids (my son refused to use the toilet the whole time he was at mnainstream school).

Thanks Jimjams-its a real relief to hear that.I was nearly in tears when I left the school this moring!
I am seeing the psychologist tomorrow and she is going into the school on Thursday, so I will certainly discuss it with her then.

As an example of the kind of problems I am having, I am currently pciking DS up for lunch-after the extreme anxieties around food at Christmas I am sure he would not eat in the school surroundings.
One day last week I took him back after lunch and the SENCO met us at the door. She wanted a word with me, but insisted on DS separating from me at the front door and would not let me take him through and settle him. (I had been taking him to the playground and leaving him with a classroom assistant he likes-he was expecting the same routine that day) He kept coming back to me and she then said his behaviour affected the "time management" of the adults because she only had 10 minutes to talk to me-although the meeting had not been pre-arranged anyway! I was left feeling upset for him and angry with her for not taking his anxieties into account.

Does the SENCO have any training in ASD? From your post it looks as though she doesn't understand the importance of routines. I also think that if she wanted to speak to you about something that she thought would take longer than 10 minutes then she should be making an appointment to see you.

When we were preparing for ds1's transition to school, assemblies were one of the things I had the most concerns about. Children are all squashed up together on the floor with no spaces between them. There can be a lot of noise too, especially (as you also said) when the singing starts. The school had a number of options available. Their idea was for ds1 to go into assembly only for the last 2 minutes or so to start with. This amount of time would be slowly built up to give him time to become used to what was happening. He would also be allowed to sit at the end of the row so that there was less crowding and so that he could leave easily if necessary. In the end it turned out that he didn't need any of this but other children in the school have been using similar techniques with a lot of success.

Ds1 doesn't have problems with the school toilets but absolutely hates electric hand-driers. He will run screaming from public toilets if anyone switches them on. His teacher told me that a lot of the younger children are also afraid of the urinal when it suddenly starts self-cleaning. School toilets also tend to have strong smells - either an unwashed smell or a strong smell of cleaning products. If your ds has a strong sense of smell this may also be contributing to the problem.

Ds2 is also about to be assesed. One of the problems we are up against is that he usually only 'performs' at home. Only those who have seen his meltdowns are not fooled by his angelic little face!

Ds's problems with the toilets are quite complex. On the one hand, he wants to sit on our toilet at home for a very long time in the morning so that he will not have to use the school toilet to do a "poo."
On the other hand he will visit the school toilet frequently to do a wee and needs to know that he can do so-if there is any suggestion that he will be prevented from doing so he becomes very anxious (His teacher was telling him off for going to the toilet too frequently or at "inappropriate" times.) Last term they were also complaining that he was spending up to 40 minutes in the toilet at a time-it transpired that he was acually staying in there to avoid assembly!

Hi Tiggiwinkle,

Would firstly ask if your son has a Statement. If he does not have you thought about applying for one?. You can do this as a parent without having the school's say so (infact it is better if you as parent apply for it rather than school).

Would also suggest you contact IPSEA re the other issues you mention as they may be able to give further advice. Their website address is www.ipsea.org.uk.

I wish you and your DS well

Meerkats

MeerkatsUnite-Many thanks for that-I did not know about IPSEA and have had a quick look at the website. It loooks like it could be a very vauable resource.
We are seeing the clinical psychologist again tomorrow and the paed again next Tuesday.
Apparently the Communications Clinic normally makes the DX but the waiting list is over a year long here.
The psychologist told me last week that she and the paediatrician are doing some of the assessments themselves to speed things up.
I am hoping they will do this for my DS so we dont have to wait a year!
Do we have to wait for a DX to apply for statementing?

Hi Tiggiwinkle,

In answer to your last question, would not have thought so but we had a DX before going for statement. School were supportive of my DS having a statement.

You could ask for the LEA to assess your son and express your concerns (IPSEA have draft letter re this); this is the first step in applying for a statement. If the LEA do agree to assess your son a statement will follow. Its getting them to say yes (that is not at all easy in many cases - I was refused initially - but if they refuse to assess you can appeal). It is very much dependent on where you live; some LEA's are far more amenable than others.

It takes around 26 weeks to get a statement set up; something you should be aware of.

Would suggest you talk to IPSEA (there is a helpline on their website you can call) and chat with them about your concerns, they will do all they can to help you (they may well have personal experience of the LEA you come under). I have found them very helpful.

Good luck to you

Meerkats

Tiggiwinkle....my heart goes out to you.
We are in the same position and feel that the professionals are labelling us as being neurotic parents....
J has extreme difficulties with toileting and we know this is due to his ASD.
However the Paed has told us it has nothing to do with his ASD and that it's US that are causing J his problems!!!!
I have never cried infront of J and have been really careful when discussing his problems infront of him....the Paed told us we were not letting J experience emotions and that it was wrong of me not to be crying infront of J...so I did it.
The last time we saw our Paed I got very emotional....now the Paed is reporting that my anxiety and disttess is causing J to have indiscriminate micturition...that's peeing in the wrong places!!!!
I am dammned if I do...and damned if I dont!!!!