Aspergers/ASD support thread

ekathrina

It took about 2 1/2 years for my son to get a formal ASD diagnosis. All the various people he saw, ed psych, speech therapist, health visitor and his school were very sure he was on the Spectrum - but his paediatrician wasn't and kept putting off having a proper assessment. He finally got referred for an ADOS when he was 6.

GlasweJen

I have no idea how long it took mum to get me assessed but my 7 year old niece took 3 years to get a firm diagnosis and even now they keep wanting to change the label.

I'm recovering well, have needed 2 surgeries since the transplant ecause of problems with the graft but hopefully be home for Christmas.

concerned43

GlasweJen wrote: »

I have no idea how long it took mum to get me assessed but my 7 year old niece took 3 years to get a firm diagnosis and even now they keep wanting to change the label.

I'm recovering well, have needed 2 surgeries since the transplant ecause of problems with the graft but hopefully be home for Christmas.

Hope your home soon too - best wishes

cobbingstones

Hi all,

I am currently waiting for a diagnosis for my son who is 5. School feels he could be either Asbergers or High Functioning Austisic

I would like to ask you all for any tips to help for Christmas? Last year he opened one present, then returned to the table and did some writing (His obsession at the time) Then with lots of encouragement he opened a little more etc.. He did not seem at all bothered by the whole occasion and to be honest at the time I felt very upset.

This year I've bought lots of Mr. Men toys (his current love) and a few different others for variety. How do you all prepare your children and yourselves for the differences that Christmas brings?

Many thanks

GlasweJen

My stuff wasn't gift wrapped. A sticker with the givers name on it was put on the gift and everything went into 1 big present bag. Reason for this is I hate Sellotape!

Obviously every child is different, why not ask him how he wants Santa to present gifts? Or do a gift an our, or open one, write thank you letter, open next one?

Savvy_Sue

cobbingstones wrote: »

I would like to ask you all for any tips to help for Christmas?

My top tip is to find out what he expects, from what he's been told at school ...

Of course we didn't know DS1 was an Aspie when he started nursery, but that year we went to stay with Grandma and Grandad. Their way of doing Christmas was not my way of doing Christmas, but that was OK by me, unfortunately it wasn't the way the nursery had said Christmas was, and THAT led to tears!

He'd been told that when he came downstairs on Christmas Day, there would be a pile of presents left for him under the tree. There wasn't, he'd had a stocking on his bed, but family presents were passed around later and not put under the tree (or there'd have been no room to move!!!)

Cue tears and upset, not really resolved when the presents were produced to prove they existed ...

GlasweJen wrote: »

My stuff wasn't gift wrapped. A sticker with the givers name on it was put on the gift and everything went into 1 big present bag. Reason for this is I hate Sellotape!

Obviously every child is different, why not ask him how he wants Santa to present gifts? Or do a gift an our, or open one, write thank you letter, open next one?

:rotfl: at the sellotape! A few years ago there was a TV documentary about that lad who wrote 'Freaks, Geeks and Asperger Syndrome', he hated presents too and didn't have anything wrapped up, best of all if it wasn't even in the box, even if it was something he wanted!

My uncle never used to open presents either, he'd sort of peel off the sellotape and peer inside, but sometimes he'd just leave them like that for months. He was always 'different', just never occurred to anyone that there was anything wrong with that, IYSWIM.

starnight_2

DS's gifts are set out on the settee, I know which ones to wrap so he doesn't get overly distracted lol

Then I sit there with a bin bag and scissors as he doens't like opening the boxes but loves tearing the paper off.

cobbingstones - I always find the best thing is to talk to DS and see what he expects, even on Xmas we have a routine of what happens in which order, and it's stuck to every year (so far anyways). Half way through the day when we're at my mum's he gets the conservatory to himself and left alone as he always needs that break, even at 8/9 yrs old.

cobbingstones

Thank you. I will chat to him this evening and see what his expectations are.

raq

munchings-n-crunchings wrote: »

With any diagnosis, it's up to the young person as to what is disclosed.
There are points in life, when a label can be useful, as they help explain, and give understanding. It's important that your son understands, that regardless of any label, it's still him underneath, and nothing changes that.
The diagnosis is not necessarily for life, as there is always the option of requesting a misdiagnosis to change that.

My daughter, now 15, hope to go to university. She was advised aged 10, to start one to one coaching in maths, in the hope that she could get at least some sort of grade, but the teacher felt that on leaving school, as long as she could check she had the correct change from a shop, that would be a good result. No! She wants more than that.
Currently, she is working at a grade B, so has proved everyone wrong. I have got her a tutor, but only for the last 6 months.

Don't worry about the school report. I think tribunals are fairly used to them being pulled apart. If you are within time appeal, or if not, claim again knowing what to expect, and be prepared to take it to tribunal.

My daughter went to CAHMS, and we found their help really useful, especially in coping strategies for stress and anxiety, and sleep disorder.
The one piece of advice I would give you, is to engage in conversation with your son, the more he understands about himself, the better he will cope with life. As a parent, read up about autism / Asperger's syndrome, you will be key in supporting your son.
Luke Jackson's book, Freaks, Geeks and Asperger's will be a good place to start.

My daughter understands, that ASD is part of who she is, and without it, she just would not be the same. That attitude will get her far.

Regards
Munchie

hi there
just read your post with interest.

Can you really request a misdignosis regarding mild autism??

thanks

cobbingstones

I can second Luke Jackson's book. Fantastic! It's easily ordered if your library does not stock it.