DS probably Asperger's from inittial assessment Need advice on what happens next please

[alison222]

Hello,
We had an appointment with the neurodevelopmental tema at the hospital on Monday where after talking to us and assessing thim, they said he seems to tick enough boxes to be deiscribed as AS and that they had to formally score it and we have to go back to meet them to discuss their findings and what happens next.
As this meeting is not until 24 July, can anyone give me an idea of what will happen next. He is 6.5 and his teachers want to know for definate so that they can look at anything they need to do before he moves up into year 2 if poss.
How slow is this process likely to be and what can I expect?

I was sort of expecting the DX but am still shocked - emotionally although rationally know its better now than later.

Have ordered the recommended book from Amazon and read tonnes off the web re generalities, but know nothing of the process with the hospitals.

Sorry about awful typing hit the post instead of preview button.

Having a bad day as DS has been in hospital for anaphalactic shock this afternoon too

anyone?

Ack, I'm posting on special needs annoyed with ds's school but my ds has aspergers. he's five and I thihk he's the bees knees. How old is your ds? Why did you ask for a diagnosis?

Poor you - it seems a bit quiet on here tonight but I'm sure someone with experience will be along soon. I've no experience of AS I'm afraid but just wanted to bump this for you.

Sorry Aloha - posts crossed .

Aloha hi say your thread but didn't wan't to hijack.

We too have similar behavioural problems - although not too bad. His current teacher is great and has his measure.

My main reasons were - I was wondering re his behaviour - list soundied a bit familiar. and the school asked me to get a referral done as they suspected soemthig - though didn't name what re social issues and his behaviour in class.

Mine were really things like inappropriate over reaction to things not goiong his way - changes to expected routine - like toddler tantrum meltdowns. Disproportionate frustration, noise and smell snsitivity,
Not noticing when other people told him to stop playing a game becasue he was still enjoying it and not realising he was annoying everyone else etc

It is quite likely that nothing will happen next! I know it sounds mad, but ime once you have a dx you are pretty much on your own. Ds is on school action plus, which seems pretty meaningless tbh. You can organise a meeting with your school's SENCO who can organise a multidisciplinary meeting with his teacher, TA, local autism support and anyone else relevant (in ds's case his OT & the speech therapist came) to work out plans to support him.
I feel quite in the dark abotu what's happening with ds a lot of the time.
A diagnosis IS shocking - it knocked me back for at least six months, maybe longer. IT was a horrible, horrible, upsetting shock.
My ds has nothing to do with hospitals, just sometimes go to the local child development clinic. You expect all sorts of things will swing into action once you have a diagnosis, but ime it just doesn't happen.
I'm sorry if this sounds gloomy - ds is fantastic and progressing all by himself.

true enough aloah- not alot does change ref school etc...i have 2 dx with AS and neither are statemented...so neither have any guarantees of consistant help at school.

but for me a diagnosis has helped...as it has given me a sense of direction- where to go- what to do.

It might be worth asking the school to contact the local autism outreach team, if there's one in your area.

I think that rather than waiting for the actual dx the school need to start thinking about strategies now. Even if it was somehow decided that your ds doesn't have AS after all, the fact remains that he does have difficulty with noise, smells, social issues etc and he will need help with those:

For changes to routine the SENCo could look into things like visual timetables or social stories.

The noise sensitivity could be helped by things like allowing ds to have a quieter area to go to if it gets too much, not sitting him at the noisy end of the classroom (eg not next to the window if the school is near a busy road), letting him use headphones to block out certain noises.

Giving him visual clues when it's time to stop an activity or even giving him a timer.

These are the kinds of things that the school could be looking into while waiting. I think the NAS also provide packs and info sheets for teachers so contacting them could also help.

Hm,
I got the distinct impression the teacher was expecting all sorts of things to swing into action once a DX is made - quite what I don't know - I guess I need to go and have a chat with them.

mind you...its fantastic that the teacher is at least feeling like that- that makes a huge difference.
she sounds like she's on your side- that counts for a lot!

That's true but he changes teacher next year as he moves into year 2 so we have to start again building a good relaionship with the new teacher and hope she is as understanding.
The school is generally good so I hope it won't be a problem.

The Dr at the hospital did mention the possibiliy of doing a school visit to see how he is in the classroom. I don't know if that is a definate though but might be useful for the school in looking at techniques for dealing with DS.

It was also mentioned that often AS children have difficulty writing and often teaching them to touch type and providing a computer for them can be really useful. Don't know how severe DS is and he does find writing hard - BUT he is only 6.5 so there is time for that to improve too.

Not too sure how much help can be provided but the Dr at the hospital seemed to think there were lots of things that could be done to help at school.

I guess I wanted to know how likely any of this is in everyone else's experience and how hard it is to get there.

My ds1 (6yrs) has always found writing difficult as he has poor fine motor skills. His Yr1 teacher mentioned the possibility of him using a computer for written work as he gets higher up the school. His Yr2 teacher lets him write stories on the class computer sometimes and he enjoys that. He's made a lot of progress with his writing this year though so, like your ds, a lot depends on how well he manages in the future.

Has the school spoken to the Educational Psychologist about him yet?

The initial meeting for assessmsnt was only on Monday so I don't think the school have done anything yet. They seem to be waiting for guidance from me when I know for difinate the DX.

Do you think I should encourage them to start doing something then?
and if so what?

my ds7 was diagnosed in May. It didnt actually take that long. We filled forms, school filled forms, went on our to visit consultant, then about 6 weeks later she met with us and ds and diagnosed him....he is only mild. Once our school had the diagnosis in writing they have informed the local education authority so that their special needs adviser there can send information and help. She cannot visit until Sept, buy which time he will be starting year 3. He does not qualify for extra 1 on 1 but will be put into a help group for literacy....he wont be on his own . Although he struggles with writing and spelling he is by no means bottom on the class, its his concentration thats the big problem. We are still new to this too. We have joined the local autistic society and are going to do a course called "moving on" in september.