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Asking for advice - asd diagnosis

(51 Posts)
Sax Mon 13-Jun-05 13:18:44

I am still not really accepting my ds (4yrs) has autism. He was dx in March so you'd think I'd have had a little time to get my head round it. I wondered when any of you were at this stage if you went round telling people - ie, I want to tell Mums at nursery but of course it doesn't come up in conversations and I think they will sort of dismiss him - he's going to go to school with half these kids so it would be good for them to know - but is it better for now not to say?

I find it hard to say the words out loud to people anyway because I think it puts them in an awkward position then as to what to say. Sorry if this sounds a little silly!

Just asking for some advice as to how to accept it all! neither of the grandmothers (who don't him that often) accept the dx therefore it isn't generally talked about much but its on my mind the whole time!

Tiggiwinkle Mon 13-Jun-05 14:45:53

Hi again Sax! We are in a very similar position to you as our DS was also dx in March, with Aspergers.
I have not told any of the other parents at his school yet either.
I have joined a local support group for parents of children with autism, and found a great deal of support there. Is there anything similar near you? It gives you the chance to talk about it and get used to the dx with people who understand.
My family have accepted the dx, although they were sceptical when an ASD was first mentioned as a possibility. They do not live locally, however, so they do not see a lot of him.
I know what you mean about feeling awkward talking about it-even mentioning it to health professionals he is seeing for other things seems strange.

macwoozy Mon 13-Jun-05 14:54:57

I will always remember how I felt when my ds was diagnosed. I realised that he had autism long before he was diagnosed but I still remember as if it was yesterday the feeling of sadness, disappointment and anger when it finally dawned on me that my little boy had autism. So I do understand why you are finding it difficult to accept the diagnosis.

My ds is 5, and I've only managed to tell only a handful of mums, I am hoping that since many talk to each other, word might have got round. But like you say theres not always the right opportunity to explain. I did reply to a birthday invite he recieved once, by explaining why birthday parties are difficult for my ds, I suppose I found it easier to write than verbally explain. I do understand how difficult it is for you.

Sax Mon 13-Jun-05 15:46:09

Hi again Tiggiwinkle and Macwoozy - thank you for saying your experiences - at least I know the feelings are normal but its like I WANT to shout it from the rooftops, becasue Im feeling like I'm bursting to tell everyone, sort of to off load it really but I know I won't do that because its not something one should do!!!! I think I will eventually tell some of the Mums at school when I get occassion to, like if he's going into one or when he's playing up in front of them - I guess that will be easier so they can 'see' something different. Trouble with it being the invisibility disability is that he appears to be perfectly fine! Thats also why I question the dx soooo much.

Davros Mon 13-Jun-05 21:03:28

dx in March and you haven't got your head round it, I'm not surprised! That is no time at all. We didn't have this problem as DS was not at any sort of school. It is hard as you NEED to talk about it to be able to move on, even a little, but it takes a lot of practice. Can you give yourself more time? Why tell them now with summer hols round the corner? You can practice on other people in the meantime and maybe get some support as suggested. Time enough to put yourself through telling people because you "should", I think it will only upset you at the moment. SOrry if this doesn't help

Sax Mon 13-Jun-05 21:04:14

Does anyone else question their dx?

Sorry if I am harping on about something which has perhaps already been discussed in depth but I'm fairly new here - I perhaps ought to search the archives instead.

Sax Mon 13-Jun-05 21:27:08

Thank you Davros - you say it will upset me to talk about it but no one seems that interested. He is very capable and if its mentioned no one seems to want to hear about all the ins and outs, they tend to change the subject, they have no idea the impact its had on my/our lives. To me its a pretty huge deal, to others it seems they just brush it off saying 'well it is mild autism' which doesn't really help the way I feel.

Sax Mon 13-Jun-05 23:10:10

Thank you for those who did reply - I'll read the archives!

Socci Tue 14-Jun-05 00:32:58

Message withdrawn

QueenFlounce Tue 14-Jun-05 08:32:18

Bumpity Bump.

I've no experience of this, but wanted to bump it up the boards for you.

shey Tue 14-Jun-05 08:58:34

Our ds (3.7) has had three assessments. At the last one the Paed said he is ASD. I don't know whether we have not accepted it or we don't agree with it. Whichever it is we haven't talked about it much but to those people we have mentioned autism to, their reaction has been very pos!
Good luck, I know exactly what your feeling. (diagnosis in May)

Davros Tue 14-Jun-05 09:27:45

I suppose the whole issue of other people not wanting to talk about it is hard if you NEED to. Is there anyone close who you can talk to and say I need to talk about it. As I said, it takes practice and it also helps to work out what you think and feel yourself. Maybe a support group would be a good idea if you're ready? It definitely helps to know other people in the same boat in RL. Its not just accepting or coming to terms with your child's dx, its hard to enter a whole new world that you thought you'd never have anything to do with (terrible sentence construction!). You're doing a lot better than I did, I didn't avoid it as such, but in those days it was easier to just keep to yourself and I found that joining a SN playgroup was the start of "coming out" (!) for me.

Tiggiwinkle Tue 14-Jun-05 10:42:26

Sax, re. questioning the diagnosis, I certainly do it with ours all the time. We had not suspected an ASD until it was first mentioned last October. I had had my DS referred to the CDC when he was 3- I thought he might be dyspraxic like one of my older DSs, as he "flapped" his hands. I had discounted autism, as I knew very little about Aspergers or the high-functioning end of the spectrum, and he was clearly not "autistic" in the way I thought of it then. The first two paediatricians he saw at the CDC missed it as well.
However, looking back I can now see the traits were there, but I did not recognise them-he had echolalia, for eaxample, but I did not realise the implications of that. A lot of things became much more pronounced in the autumn of last year, as he did not cope with the transition from reception to year one.
The school have been quite difficult and when the possibility of autism was first mentioned, the SENCO was very dismissive. She has accepted the dx because she respects the person that made it, but still says he is "not like" the other autistic children in the school. He does not display a lot of the behaviours there that we see at home, but that is apparently quite common with Aspergers as they struggle to conform, and then let it all out once they are "safe" at home. What is your DSs dx axactly? Did you suspect it or was it completely out of the blue?

Sax Tue 14-Jun-05 10:44:47

My whole family are very much 'get on with things' people which is why I'm in the mess I'm in (another thread re:depression). I do not feel I can open up to them, don't think dh particularly wants to talk about it a lot (I do mention it here and there) and as for the support group, one was offered but I couldn't go becasue couldn't get childcare in time. I know it will take practice which is why I'm anxious to discuss it, however, not sure with whom at the moment. Thank you for all your replies.

Sax Tue 14-Jun-05 10:53:44

Sorry Tiggiwinkle, I hadn't refreshed before writing this which is why I didn't answer you question.
He was firstly social communication problems secondary to a language disorder but on second review now has dx of autism.
I guessed this way before anyone mentioned the 'actual words' to me and everyone seemed to be trying to protect me by not actually say autistic, therefore I feel I've been trying to comes to terms with it well before he was diagnosed. BUT everyone kept saying he wasn't so that is the hard part, one minute you trust your judgement, next you listen to the so called professionals. I don't think I've ever quite accepted that the HV told me he was an irritating and annoying little boy at his 3 yr review and how like her son he was. She told me her son always got in with the wrong crowd and has finally got a few GCSEs but wasn't interested in school. I think these commments went deeper than they should have - I contemplate things for far too long. I now hate her and try never to see her if possible.
I do accept the dx one day but question it the next!

Davros Tue 14-Jun-05 11:09:32

Sax, you could try the NAS Parent-to-Parent helpline rather than trying to orgnise childcare to go somewhere which is just more stress. I would be more than happy to talk to you but I'm so far along the line I don't think I'm the best person, too hardened

Sax Tue 14-Jun-05 11:14:38

Thanks Davros, an avenue worth thinking about. You don't sound hard, even if you say your hardened!

dinosaur Tue 14-Jun-05 11:28:25

Sax I don't post much on Special Needs atm (will explain why) but it sounds as if you have a bit in common with me.

My DS1 was diagnosed with high-functioning autism when he was 3.5 years old. I really struggled with the issue of whether/when/what to tell other people, especially other parents. I did tell quite a few other parents who knew him, and got a range of responses, not all of them helpful, one or two of them downright upsetting. The parent with whom I found it easiest to discuss DS1's difficulties has a child with special needs himself. I think this was precisely because he didn't feel awkward about knowing what to say - he didn't say anything - he just asked me questions about DS1.

I do know what you mean about other people feeling awkward though. Lots of people said things like "Oh, I bet he's really bright - I'm sure he'll do really well." Which is clearly an attempt to be nice and positive - but very annoying because it's not based on anything at all, other than a desire to say something comforting.

I agree with other posters - unless there is some compelling reason to tell the parents of other children, I think (given my own experience) I probably wouldn't tell them too much at this stage, and instead concentrate on finding some other more understanding people to talk to. I'm happy for you to contact me if you think it would help.

My DS1 is very capable academically, and is doing really well now - he's managing pretty well in a mainstream school, and is doing so without a statement of special educational needs. That's the main reason why I don't post much anymore - I feel at the moment that I can't really justify it. He's nearly 6 and in Year 1.

What's your DS's behaviour like? I used to feel more compelled to tell people about DS1's diagnosis when his behaviour was really challenging (he used to hit and bite a lot).

Sax Tue 14-Jun-05 11:45:10

Thank you for your input dinosaur - ds1 was very difficult between 2 and 4 but he's calmed down so much. Now we just have muddled conversations, goes into a strop about loads of little things (unexplained things) in the day, getting more stubborn and independant, refuses to feed himself although can, generally more inwardly cross than lashing out now! All in all much worse when tired or in new circumstances which is why I dread school starting - long days, new situation but school do seem prepared for him having integration days now etc. I know some of his behaviour is just normal growing up but its sometimes hard to differeniate between normal progression and asd related issues.

dinosaur Tue 14-Jun-05 11:54:39

I know exactly what you mean.

Close liaison with the teachers is really important when they get to school, ime. Have you met his class teacher yet?

Integration days sound good - what happens then?

Sax Tue 14-Jun-05 16:20:08

Yes dinosaur the class teacher has gone into the nursery - he went for a storytime (1 hour) yesturday with her and the rest of the new class and the integration will be with one other special needs person in the class where he'll go in with his nursery teacher and show her his classroom, peg room, dining room and lots of familiarity sort of sessions. This sounds soooo positive and even though we aren't pursuing the statement at the mo (EP has refused at the mo.) we'll be reviewing after a month of starting in case we need to appeal this decision.

dinosaur Tue 14-Jun-05 16:26:57

That all sounds excellent, Sax. I arranged a very similar visit to school for DS1 before he started so that he could familiarise himself with his new classroom, see which would be his peg and where to put his lunchbox, make sure he knew the way to the loos etc etc.

DS1 has settled in very well but STILL won't use the school loos for "Number Twos". He'll only go at home!

dinosaur Tue 14-Jun-05 16:29:53

p.s. I see from another thread that we've got something else in common - I've got three DSs too! Mine are aged six in July, four in August and one in August.

Sax Tue 14-Jun-05 16:31:13

Dinosaur, at 6 what asd behaviour does your ds display? apart from only wanting number twos at home!

Sax Tue 14-Jun-05 16:32:13

Are your other two definately NT, I am slightly concerned about ds3 (definatley not ds2!!!!)

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