It's not come a huge surprise, i have had concerns for a while, but to hear the doctor saything that i was right, that he probably has a form of autism has shocked me somewhat.
DS3 is 21 months old. He only started walking a few weeks ago, and has already been diagnosed with low tone in his hips, knees and ankles. He's a very bad sleeper, often waking for the day in the early hours. He absolutely hates getting dirty or messy, and bathtime is a huge, huge battle - he hates being in water. He'll only eat certain things, and can't tolerate any changes. He's taken to hurting himself when he's frustrated or angry or upset - he'll pull his hair out or bite himself. He likes to line things up, cars, bricks, books and get immensely upset if you move something he'll have to start again. He can't cope with any change in routine, he'll scream and scream if we go somewhere we don't usually go. He only has three of four words and communicates mainly by pointing and screaming.
But, saying that, he's a lovely little boy, his eye contact is ok if he knows you - if he doesn't he won't look at you. If he hurts himself, he's happy to let me comfort him. In general he's a happy chappy who giggles and smiles lots.
He's been assessed a couple of times, and been seen by the MDT, and is waiting for OT, physio, a referral to a sleep clinic and SALT.
The pead today said that she'd like him to be assessed for autism, and is referring him to a SN nursery. He's also to have more blood tests done. He had some done a little while ago and a thyroid test came up a little high, so the pead wants it repeated just to make sure that he wasn't cooking an infection or something when it was done.
She also wants him tested for Fragile X syndrome. Has anyone any experience of this?
I feel better for just having written this down, but i'll admit that my heads in a bit of a spin. I'm not sure how i feel, one minute i'm upset, the next i feel relieved. I just dont know.
Any words of wisdom or advice would be very much appreciated.
Here are some suggested organisations that offer expert advice on special needs.
SN children
Can someone please talk to me? DS3 may have ASD, just found out.
DawnOfTheDeementedDead · 18/10/2011 21:05
AFAIK, Fragile X is a chromosome abnormality (on the X chromosome) which can cause Autistic-like behaviour?
Some info here of the reliable non-panic-inducing variety 
He sounds lovely and adorable 
It's pretty standard to check for Frag X when an autism dx is suspected, but usually it just rules it out so don't worry too much about that.
Whatever happens in the future you're in the most difficult time now - it is usually a bit of an emotional roller coaster (understatement)- but it does get better (ds1 is 12 now and severely autistic, non verbal with severe learning disabilities - 90% of the time he's a delight, and yes although it can be tough, he's made our lives a lot better and more rewarding than they would otherwise have been as well - which I wouldn't have predicted when I was in your position).
My one bit of advice is to try and seek out friends in the same situation as you - it makes such a huge difference to have someone who totally gets it. My friends with SN kids saved my sanity I think and they're always happy to listen/swap stories.
Thank you all. It helps to know that there are others out there who have been through this
The Dr discussed portage with me and said that it was hugely unlikely we would be offered it as there only one part time worker here and she is immensely busy, so she thought the SN nursery would be better for him. So were just waiting for the nursery to contact us now to arrange a home visit. My elder son went to this nursery years ago, as he had developmental delay resulting from his prematurity, so i know that he'll be well looked after and am confident his needs will be met there.
It's good to know that Fragile X is routinely tested for, and at the moment not something i should be overly concerned about - phew.
Thanks for the suggestions to seek out NAS and CAF - i'll get onto that later this week.
DS has Aspergers but wasn't diagnosed until age 6.
One of the best pieces of advice I got was that above all you need to remember whatever label they give you he is still the same child that you love dearly and who loves you. NOTHING about that has changed.
Like DazyKat I remember reading everything I could get my hands on and then wanting to do everything all at once to help - trying to be very practical about it. It doesn't work. You won't be able to assimilate it all and change everything you do all at once. you need to take it slowly. Also you need to find out what kind of help is available and keep asking for it. It doesn't seem to be automatically offered. I heard good things about Early Bird - but DS was too old for that.
Also so many things change as they get older and you learn which strategies work and which don't. So many of the things you describe sound familiar.
passes 
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