Aspergers/ASD support thread

mandy.h_2

a diagnosos is essential in school we had to pay for a private one cos CAMHS said his behaviour was our fault, was offered the parenting course very unkimdly told them where to put it explaining i have a very normal well behaved child 2 yrs older than ds and so my parenting skills are fine.

SDW this sounds like my son i hate parents evening i think the are talking about 2 children the subjects he likes and gets he has glowing reports others he is the devil child.

RE is our nightmare subject this year says teacher hates him i think she just does not get it. He got detention for being exited from class Ds refusing to do it as he never actually got through classroom door so was not exited. technically he is right but we are at stalemate. his answer is dont need re cos dont want to be a priest. you can imagine reaction in a catholic school

moo842

hi there
i strongly beleive my son has an asd. i was told to look at the ten points of autism and use these to write doem why i think this relates to my son. Where can i get this?

blue_monkey_2

I am not sure, who told you to look at these? Have you looked at the NAS website? Have you been to the doctor? He/she will refer to you to a paediatrican and it goes from there.

http://www.nas.org.uk/autism

moo842

we've seen 5 different peads in the last 2 years (not through choice) and each time we start again. This time i want to go and see number six armed with all the info they need to make a diagnosis. I get all tounge tied when i'm in there, and they're so worried about taking his history they never get as far as a diagnosis!!

blue_monkey_2

Yes, I know what you mean, we are on number 4 - waiting for number 5 but have to wait to move to a new CDC as the other, after a year, said they could not see us. It just seems to be waiting, waiting, waiting.

I think that to get the diagnosis you need an appointment for the communications clinic or CAMHS, but the CDC is 18 months wait and CAMHS are being a bit choosy on who they see. From what I understand the paeditrician does not disgnose. We saw a lady at the ADHD clinic who has said she wants him referred to CAMHS for his ASD.

Funnily enough the doc sent a letter mentioning his ASD and suddenly the people who thought his behaviour was my fault has changed her tune and is not blaming me for his behaviour anymore!!

Can you go to your GP and ask for the referrals? My GP referred me - mind you we have had 4 referrals and each one has been bounced. Each time there is a different excuse.

It is such hard work, all I want is a disgnosis so that I can get him the help he needs. I think DS has ADHD as well although this will not be officially regognised until he is 7, however doc has also noted on his letter that he was 'always on the go'.

How old is your child now? You need to make notes of your childs behaviour and run down the list, I had a list from the school also so I had another person back up what his behaviour was like. DS was also on an IEP so this went with me too. Also make a note of all the things you want to say, start now ready for the next appintment - too many notes is better than not enough, and tick them off when dealt with. Go and have a look at the NAS website, there is lots of useful info on there.

Strapped

I agree with BM. Before the paed's appointment I wrote down a brief medical history of his childhood to date (birth/significant illnesses/etc) followed by a list of all the "unusual" behaviours / areas for concern - using the NAS site as a prompt. Things he does at home, and how he is at school, using examples of what he does, how often, when does it usually happen, what (if anything) prompts it, what has been tried so far, backed up with reports from the Ed Psych and other professionals that have been involved through school. The paed said that they have many, many more kids referred to them than they can actually assess so I think you do need to be quite clear that "there is a definite issue here" and make their job as easy as you can! Good luck.


BTW, I wonder whether I can ask whether parents find that their child misses out on a lot of school activities? DS is not going to be in the Christmas concert (even though he's learnt all the songs and will be the only one not in it). His teacher told him that he could sit with me in the audience, which I was a bit mad about without discussing it with me first. I would've suggested he sit with the teacher so he could still sing even if he didn't want to be up on stage or they don't trust him to be up on stage (last year they couldn't STOP him leaping up and singing - including everyone else's parts :rotfl: He loves singing). Also, I've been told he can't go on a school trip in Jan unless I go. As it happens, I will go, but I feel a bit blackmailed by the school I guess I'll have to pay for entry to both places they're going too.

Savvy_Sue

Strapped, I would find what you are describing unacceptable. I don't know how I'd deal with it, but they seem to be excluding your son from things on the basis of his special needs. And that sends out the wrong message to all his classmates too. "X doesn't fit into this, so we'll do it without them."

(Reminds me of a friend who went in all guns blazing on behalf of another parent who had been told to collect her child before Assembly. Why? Because her child was temporarily in a wheelchair, and the school couldn't get their heads round how they would get a wheelchair into the hall because there were a few steps. And this despite the fact that there was a perfectly good ramp into the hall from the playground, so all they had to do was wheel this child around the outside of the building and into the hall! But it was easier to exclude the child from assembly by asking mum to pick them up early! :mad:)

I guess I'd start by asking what needs they feel he has (eg always needs 1:1, needs 1:1 at certain times etc) and then what they ARE doing to meet his needs. It doesn't need a diagnosis to get extra help / statementing: it just needs a recognition of the need!

I also would expect the school to pay for your entry if you are going out with the school. If he had a teaching assistant with him, the school would pay for them.

Actually I think I'd ask IPSEA for advice. They may help you get the school talking to you about what you think would be best for your child, rather than saying what they're going to do regardless of what's best.

blue_monkey_2

Actually I was discussing this with someone the other day. In the last school my son was at they told him (and you might remember this) that if he did not dress up for the school play - and I had warned them months before he did not do dressing up - that he would not be able to go to the class christmas party!! I was outraged and after a lot of thought decided that it was better he stayed at home for the day because he would not have wanted to do it and would have preferred the party. There were lots of things, he used to get exculded from the other kids almost every day.

The new school he is at has a different approach and he is part of the class the whole time, he can even sit in assembly now, albeit a bit fidgety. He has a little mat of his own to sit on so he knows that it is 'carpet' time for a story or the like. He is not excluded and from what I gather he has other kids that help him at lunch and play times. He is accepted for who he is and there is no exclution making him feel different. I can honestly say that moving schools was the best thing I ever did for him. They recognise his problems - even to the point of him not wanting to do his reading and key words as they did it at a different time of day.

I do now beleive it is all down to the schools. I also feel that the smaller the school the more understanding they are of the problems our kids have as they have more time for the kids instead of one teacher having lots of kids to deal with. He is one of 3 special needs kids in the class.

I would certainly be getting in touch with IPSEA and finding out what advice they can offer. Please do let us know.

karmacookie

Hi Strapped

Last year there was a teacher at DS school who just did not 'get' his ASD therefore his ASD behaviours were always worse in her class and he got into no end of trouble. He would be so upset that when he got home from schoool he would take it all out at home.

I wrote to the head explaining exactly why from an ASD point his behaviour had occurred and stated that in my opinion the school was in conflict with the DDA act.

Appology from the head and from then on the school bent over backwards to accomodate him!

shazrobo

hi strapped, at the first infants school, that my sons went to, they were excluded from concerts etc, and also they could only go on school trips if i went. the school paid for my place as i went as one of the 'helpers',
after i moved them to a smaller school, they were included more often, and were made to feel a part of the class, in which they should have in the first place