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DS just diagnosed with mild ASD - help?!

(9 Posts)
Fishandjam Tue 18-Mar-14 14:57:57

I hope I'm not being cheeky by posting here as well as on the SN: Children board (link here). I was just working on the basis that Chat tends to get more visitors. If I am being presumptuous then please tell me!

In a nutshell: DS is aged 4 and yesterday after an assessment by a consultant community paediatrician was diagnosed with "mild ASD". I don't have a written report or diagnosis yet. I'm feeling a bit lost as to what to do next. There's more info in my other post.

Thanks in advance for your help.

Mollyweasley Wed 19-Mar-14 11:48:19

I felt very similar when DS was diagnosed aged 7 with AS. It was a really odd time even though I knew it was coming. I did the same as you and posted on this board for the first time. Somebody answered and said that they went through exactly the same thing and then that they realised that their had AS themselves and that they were doing really well (with a job, family…). That really cheered me up. Then I read and read (The book to start with is Tony Attwood's complete guide to Asperger Syndrome) Then I read on women with Asperger Syndrome (Liane Holliday Wiley is my favourite author on the subject) and then I realise I had AS too (I now have a formal diagnosis). Everybody has strength and weaknesses, the thing is in the world of autism, the weaknesses are in areas where the rest of the world is so good (social skills and day to day practical skills). It takes a lot of humility for a parent to accept his/her weaknesses and be open about it to his children, but I do think it is the best thing I have done for my boy, recognise that just like him I have strength and weaknesses (turns out there are similar to his!). I have a family, a degree and a lovely DH, and never had the support that he will get because of his diagnoses so if I could do it, so will he…and so will your boy smile.

Fishandjam Wed 19-Mar-14 14:35:36

Thanks for your insights mollyweasley, and for being so encouraging. I ordered the Attwood book yesterday after reading good reviews about it online; I've often wondered if I might be ever so slightly on the spectrum myself (though without really knowing anything about it) so I guess it's possible I'll have a lightbulb moment when I'm reading the book!

I think the shock is wearing off now. It wasn't truly a shock, as I've said before; it's just that I wasn't expecting it yesterday - I was expecting the paed to be talking about poo confused (And that still remains to be sorted out, oh joy.)

Do you know if there are any good resources on how to play with children diagnosed with AS? I know I need to really focus on imagination and make-believe but I'm not sure how to go about it the right way. (For example, DS will take concepts that he's read in books or seen on TV, and make up play around them - getting stuck in the sap from Tree Fu Tom, perhaps - which I thought was fine, but the paed said it wasn't really.) I'm also not sure how to improve things like eye contact and talking to people directly rather than to the room in general.

Mollyweasley Thu 20-Mar-14 09:26:02

I don't know much about encouraging imaginative play/make believe. It is very difficult for me to play these games with my children but I do play other type of games. DH (NT) is better at it so he tends to do it. I think as your DD grows up she will play more and more with him and might lead to that kind of play (although my children still play next to each other and there is not much I can do about it!-). I guess that you have been told to do that to encourage your DS to "put himself into people shoes" and imagine that they might be thinking something that he might not which is a big issue with people in the spectrum. (We use this expression so much in my house that my kids literally now grab other people shoes and pretend to be them! grin
I think a lot of people use Social Stories
www.thegraycenter.org/social-stories to explain a lot of the social behaviour issues (e.g. look at people in the room when you talk). I am of the opinion that we should play to the strength of children with ASD while giving them strategy for coping with the weaknesses. So if my children do not like eye-contact, I don't force it (eye contact can make me feel sick) but I tell them to fake it by looking either at the nose or the mouth (I myself favour the mouth because I can try to lip read which helps me with concentration in busy environment)
Hope this help.

Tambaboy Thu 20-Mar-14 10:03:27

Fishandjam Hanen books are really good, I've got TalkAbility as recommended by DS' SALT a few years back. It tells you how to encourage eye contact, play, conversation skills, friendships etc. It is not cheap though, I got mine slightly cheaper from eBay.
More than Words from Hanen seems to be very good as well but I'm afraid I haven't used it.

Fishandjam Thu 20-Mar-14 14:28:25

Thanks both, I'll definitely look into those stories/books.

We told DS's nursery the day before yesterday about the diagnosis and so far their reaction has been to deny that there''s anything unusual about him. Last night at pickup one of the carers spent ages telling me about how he'd spent an hour role playing with other children and how she had wished she could get the paed there to see it... I guess the subtleties might be difficult to explain to many people!

Oblomov Tue 01-Apr-14 21:58:24

Doesn't sound good to me. If nursery are denying everything, then you may be fighting a losing battle?

Fishandjam Sun 06-Apr-14 20:06:16

Well nursery have a copy of the consultant paediatrician's report now and can expect an on-site visit from the Support For Learning team, so they won't be able to deny it much longer! grin

Had a session of play with DS earlier where I tried to get him to role play a bit with the people figures in his BigJigs train set (two of them building a tunnel out of Lego over the track). Utterly knackering. He really really doesn't get it. Oh well, onwards and upwards.

fairylightsintheloft Sun 13-Apr-14 21:27:13

hi. we are in a very similar situation with DS (also 4 but in reception as summer born). Am just at the start of all this and feeling a bit lost as to how to proceed in terms of helping DS. I feel like all I see now when he does / says anything is the ASD and not him sad. One of the most frustrating things for months before we had the paed. letter with a partial diagnosis (full assessment still awaited) was friends and relatives saying how normal he was and how all 4 yo do x when we KNEW he wasn't the same in lots of subtle ways. Fortunately his nursery and reception teacher have been 100% on board. Now we have the letter I feel like the family and friends are having to accept it a bit more. Know exactly what you mean about the role play. He will pretend to be one of the pups off paw patrol and lick my arm (!) but its all based on TV or reciting dialogue out of context. When he plays with trains its recreating scenes from Thomas, not genuine imagination. Don't have any real practical advice at this point, (though DS's nursery did instigate a very successful visual timetable for him that helped him cope with different stages of the day). Just wanted to say you're not alone smile

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