My son's diagnosis (ASD) - feeling glum and helpless

[catski]

I'm not a regular poster but many of you have been kind enough to impart your knowledge with me in the past and I thought I'd update you with the diagnosis we got for my son today.

(Brief background - I became concerned around 16 months when I realised he wasn't pointing or doing much else in terms of non verbal communication. I carried out the M-CHAT test at home which he failed, had him 'Sunderlanded' at 17 months, the results of which were a little ambiguous and have had him on a milk free and low gluten diet over the last few months. He's now 22 months).

We had him assessed here in sweden where we live (my son's father is swedish) at the children's nueropsychiatric unit which is headed up by Christopher Gillberg. Although we were unable to see Gillberg as he travels so much we saw people who have worked alongside him for years, and those trained by him so felt we were in safe hands for a dianosis.

He was assessed when he was around 19/20 months and they have concluded that (at that age) he has very mild autism and will refer him on for therapy.

Feeling pretty bad, although I know I shouldn't because the diagnosis is 'mild'. I suppose I was hoping that they would come back and tell me that there was nothing wrong with him and that I was being ridiculous (as most of my RL friends have done), so I suppose it's still a bit of a shock and it's all quite raw. Also feeling a bit lost in terms of where we go now. It feels like all the impetus I had in getting to this stage disappeared during the course of our meeting today. The unit which has evaluated him are not the same people who will give him therapy so that's an unknown territory and I'm not sure how comprehensive that therapy will be (it differs from region to region). I have a sinking feeling....we live out in the sticks and I'm not hopeful that the 'habilitering' centre (don't know what the UK equivalent of that is) we'll be assigned to will have the resources or people with the knowledge to give us much help.

I feel like I need a plan of action, the sooner the better. It's going to be about a month before our habilitering centre even get involved and I am frustrated as I want to act now as from what I understand early intervention (and the quality of it) is essential for a better prognosis.

I'm really sorry for the moan. I just can't talk to anyone in real life at the moment.

catski - it DOES sound like you're doing a great job already - supermarket, pottering around etc. What does your son like to do? Can you do all the things you would normally do with a nearly 2 year old? For ideas, you could investigate the Early Years Foundation Stage information on the internet. You can get o-5 years Tracker books from QED (£5 each) which cover the different areas of learning including social and emotional development.

An 'enabling' environment will help greatly in the long term - he may be hard to 'teach' as such at the moment but will absorb learning if the right environment is provided. Look at Baker Ross perhaps to buy lots of lovely craft products such as sticky letter shapes etc. The idea is to play and experience them rather than worry about the end-product. Provide activities such as water play, pretend cooking with those multigrain cereal shapes you can get, sticking old food boxes together with masking tape etc. I was lucky in that DS was my 3rd child and I am a childminder - looking back I think it has been of great benefit to him, though it was hard to see results at the time.

Great links - thank you, just what I was looking for.

Thanks for the other tips allthatglisters - my son's favourite toys are cars (his 'special interest' as the diagnostic team called it!). In fact, one of his two words is 'car' and it's used a lot. He's also really taken an interest in numbers, letters, shapes and colours over the last few weeks so he likes playing a game of 'where's number 5?' 'where's M for Mummy?' etc but it seems rather limited and I'm not sure how to elabourate his game playing. He also likes reading books.

That's not to say that he doesn't play with other toys - he does, but these things are his favourites if you see what I mean.

I was so pleased today - he's become fond of a particular teddy bear of his and today sat it on a little chair and combed its hair with his comb. Although he's made us cups of tea and things before, it's always seemed to be something he's learned from watching us do and today was the first time I've seen him do something new spontaneously without me 'teaching' him how to do it first.

It's the social reciprocity and creative playing I think he needs help with (in addition to expressive speech of course), but I don't know how to help him with that yet.

catski, that all sounds really great , your ds is doing some brilliant stuff there.

with the number/letter/shape games, you could try asking him to match the same ones up (object to object is easiest to start with, then you can use object/picture or picture/picture), or sorting things into groups based on a feature, eg all the spoons, or everyhting blue, etc.

going with what interests him is the way to go. I have had quite a few funny looks over the years as I get out what looks like hothousing flashcoards, or teaching aids normally used in schools, at toddler groups, but if that is what dd1 likes, then that is what I go with. Building up shared attention is important, as is sharing enjoyment of a game, however "non-playing" it seems

catski, I agree with silverfrog about going with what they like already.

Going with the vehicle theme, my mindees of a similar age like using cotton reels pressed in playdough to make wheels (they're surprisingly effective)to put on to rolled out dough for a "bus". Also easy, is to draw a little race track on A4 paper for small cars - you can add a river etc.

With regard to books my ones are just starting to get into very simple repetitive stories - they like Goldilocks and the 3 Bears, and The Gingerbread Man. These are good for exploring feelings - fear, excitement, hunger etc. I use the books for the pictures and tell the story in my own words to simplify it a bit until they get used to them.

Another thing they really like doing is changing the doll's nappy - you don't even need a nappy - just a doll, an empty tub of nappy cream, an empty wipes container, and the changing mat. Also a favourite is 'hanging out the washing' (under close supervision) with some cord tied between two chairs, and pegs, tea towels etc. - they don't mind if the 'washing' isn't actually wet.

It can be a long day with toddlers and as they're attention span is very short I find I have to be inventive with the activities, using the same things in different ways. The other day I counted how many different things they did and got to about 20 before stopping. Therefore a lot of the things have to be quick to get ready and do and pack away.