Aspergers/ASD support thread

softwaremad

this is a very sad situation, but parents who cant see that their chid is a little different are in denial its a huge grieving process for a parent to accept this fact. i know at times it appears as if they are selfish but it is an awful situation for anyone to be in.

i suggest that you have a lesson teaching your pupils about all the different disabilities in the world and teach them empathy and that a disability does not stop anyone from being human and having feelings like anyone else.

we are having problems here with local children making fun of th echildren in our street including my dd who have various disabilities and i believe lessons like this in school would widen the other (bully) childrens views on life from their otherwise narrow minded parents

Sarahsaver

Here here.
My kids are so accepting and open minded because i have always taught them not to stare, to see everyone as an individual and so on.
Many people are so lazy they dont bother talking to their kids about disability.
Who knows one day maybe they will be ill or in an accident then how would they cope?

Sharra

Hi
I'm wondering if ayone could give me some advice re my son. I'll give some background so please excuse the long post.
He's in year 9 at the moment - he'll be 14 in a couple of weeks. He's always been very bright, way above his classmates and much better at communicating with adults. Because of this he was bullied right the way through primary school, and a little way into year 7. Also his dad left us when he was 6 - this really traumatised him.

Halfway through year 7, his head teacher said she felt we should get him assessed for asperger's because of the difficulty he had in forming/maintaining friendhsips and his lack of concentration in class - we agreed and waited nearly a year for the assessment.
The first part of the assessment was 6 group sessions with other lads his age being assessed by speech and language therapists. They came back and said they thought it was possibly AS - however some of the reasons they cited were things like 'he wanted to ask questions about AS and he should have known this was not appropriate as some of the lads didn't know they were being assessed for it'. 'When asked to name 5 sweet things he said jam, honey and my fingers'. We didn't have faith in what they had assessed as it seemed to make sense he would be asking Q about AS, and that they didn't realise he was playing silly !!!!!!s when answering the questions.

When we found out that the last part of the assessment was a meeting with the psychologist who doesn't even meet my son before diagnosing him, we lost more faith. And this made us question the wisdom of carrying on the assessment.
We then heard him say 'I can't do this as I might have AS' which rang alarm bells that he would use it as an excuse.

By this time he had also started making friends and we didn't want his self esteem to take a battering (although he seems arrogant he's actually quite sensitive) and for him to feel the odd one out as we thought this would jeopardise the progress he has made with friendships. So we didn't continue with the assessment.

The school pushed and pushed but at that point admitted that his support level wouldn't change (he has LSAs in with him for some lessons) but that they would get more funding if he was diagnosed with AS.
I have just recieved a letter saying VERY strongly that they want us to continue with the assessment as they are concerned about him coping with year 10 and 11 GCSE work (he's at a grammar school).
I'm not convinced he has AS anyway, I'm sure that his peer relationship problems come from the bullying, I don't have faith in the assessment process, and I think he's just a typical teenage boy lazy so and so when it comes to school work - so I'm worried about a misdiagnosis.

If he is diagnosed - then I don't really see what the benefits to him would be, it feels like the school just wants a label for him and the extra funding. I think it could easily do more harm than good to him.
Has anyone ever been in this position? 13/14 is such a vulnerable age and I'm so so worried that if I make the wrong decision, he'll be adversely affected for the rest of his life.
Thanks for listening.

Sarahsaver

I have gone through childrens and young peoples mental health services. They have been very thorough. I would not like the diagnosis to be done through the school. get in touch with your local service and tell them whats happened, i had to keep pestering but eventually the right person turned up and saw we needed help.
Remember the diagnosis is for YOUR CHILDS BENEFIT and not that of the school. if they have an ed psych in you should have been asked for consent, and that should be used to inform their teaching strategies.
Best of luck.

softwaremad

God i cant believe that your ds has got to 14 and they have only just decided to assess him for as- if he has got as then its despicable that the schools had not picked up on it earlier.

you can get a private assessment which i found much better the ed psych spends a good few hours with your child and the report is very verbose as opposed to that the LEA produce. i find with the authority that the ed psych would say one thing and then when they wrote their reports (thinking about the costs) they would state differently from what i had originally been informed.

Peter parkhouse is an ed psych that i value immensely he is private it costs about £1000 but is the best around. we have had him assess our dd twice now.

Does your ds maintain eye contact ( or does he fake it)
has he got obsessions?

these are signs of possible as

please feel free to contact me if you would like further information
trust your gut instinct too. dont be bullied by the authority in any way.

Savvy_Sue

As someone whose DS1 got by for a number of years with a school doctor indication of 'possible' AS, which has now turned into 'fragments of AS' at University, I am not so sure that formal diagnosis is absolutely necessary. Although it was always 'mild', and the only help DS1 ever had was extra time for GCSEs, so my experience may not be comparable.

The first indication I had was when DS1 was 12, and I often say that had we known earlier we might have made more allowances, let him get away with things, so that he would now be a lot less 'socialised' than he is. So I understand where you are coming from. Also with the 'typical teenage boy' thing: their brains do go a bit 'autistic' apparently, unable to process emotions etc while their hormones rage away ...

However, I thought that funding went with statementing, not diagnosis, ie if the school thinks he needs more help, then they should be pressing for a statement rather than a formal diagnosis. Had we gone for a formal diagnosis when DS1 was 12, I don't see that he would have needed help in school just because we KNEW we could hang that label on him.

I wonder if it would be worth a phone call to IPSEA tomorrow?

It is also worth remembering that the Autistic Spectrum is SO wide that your son might be somewhere on it, without displaying all the 'typical' indicators of AS.

PS It IS good that the school WANT to help and are already giving some extra help. It might be worth arranging a meeting with the SENCO to discuss your concerns and their hopes of what might follow diagnosis. Too many schools either don't want to deal with difficulties, or don't accept that they need to do anything about difficulties. If you can communicate to the school that you appreciate their concern for your son, that may help you come across not as antagonistic or defensive. Also if you are able to suggest any areas where you DO feel your son benefits or would benefit from extra help, that might be useful for them. It could also be worth asking them "What would happen if an assessment concludes that he does NOT have AS?" Because if he needs help, he needs it regardless of whether he has AS or not!

mousytrap

Hi,

My eldest son, aged nearly 6, displays quites a few traits of AS and we've just started via the paed route for a diagnosis. An EP saw him at school last September but has never come back to us with any feedback. All we've got to go on are the procedures for handling him at school that she agreed with the staff and they sound like AS ones. (I suspect that I, and possibly his Dad, are on the spectrum too but maybe more mild). The paed says we've got enough to go on and it's going to the panel for getting on the assessment queue... which he tells me is over a year long...

Anyway, I saw a discussion on sports a few pages back and wondered whether anyone had tried orienteering for their AS child? I used to do quite a bit, as an adult, a few years back, and wondered whether it might suit him. We also need a bonding activity as we don't get on very well. He shows little interest in any sports and I was the same. I took up orienteering because I felt I needed to be doing something with my brain at the same time.

My biggest concern is that he could turn difficult halfway around a course and I might need to carry him out.

He's interested in maps and the treasure hunting concept but may have trouble accepting that he needs to learn the skills from me to start with.

mousy

PS Duchy, have I met you before in "comping" circles?

Savvy_Sue

mousy, I have no idea if orienteering would 'work' or not, but I wonder if geo-caching would. Orienteering can be a competitive / team sport, and I found with DS1 he was only interested in competing if he was going to win. Then he just stopped competing.

I will go and find a thread which mentions geo-caching. I know it's about teenage boys who don't want to do anything, but don't let that worry you - sometimes I think AS is just teenager-time write large and starting young!

Here you are - it's four pages but I hope you can find the geo-thinging in it OK with a description of how it works. The beauty of it is you can probably find some caches near you, so if he goes stroppy it's not too far to carry him out. Then maybe if he enjoys it and when he's learned the skills, move on to orienteering? Which I guess might be more 'sociable' / useful in terms of him socialising.

Sarahsaver

My DS loves cross country running and got through to be a reserve for the city team! I think its because he can benefit from his single minded determination and his difficulties in cooperating with others - all he has to do is RUN!

mousytrap

Savvy_Sue wrote: »

mousy, I have no idea if orienteering would 'work' or not, but I wonder if geo-caching would. Orienteering can be a competitive / team sport, and I found with DS1 he was only interested in competing if he was going to win. Then he just stopped competing.

I will go and find a thread which mentions geo-caching. I know it's about teenage boys who don't want to do anything, but don't let that worry you - sometimes I think AS is just teenager-time write large and starting young!

Here you are - it's four pages but I hope you can find the geo-thinging in it OK with a description of how it works. The beauty of it is you can probably find some caches near you, so if he goes stroppy it's not too far to carry him out. Then maybe if he enjoys it and when he's learned the skills, move on to orienteering? Which I guess might be more 'sociable' / useful in terms of him socialising.

Interesting you say that, Sue. OH was just saying the other day that geocaching might be something for us to try. I stumbled upon a site about it a year or so ago, but OH just heard of it recently. We're near New Forest so in theory there ought to be lots of places we can go and lose ourselves...

The four of us just end up stuck at home at weekends, often feeling lethargic, which tends to make my son's behaviour worse. OH is a geek and not at all outdoorsy. He needs a big shove to get out the door, himself...

Doesn't help that I'm still recovering from a bout of breast cancer/chemo last year. Not sure when my oomph is expected to return...

Anyway, perhaps I'd should pop off and look at GPSs...

Thanks
mousy