Asking for advice - asd diagnosis

[Sax]

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!

At 9m hes trying to get up (but so did ds1 who walked at 11m) but he hand flaps a lot, he does babble which ds1 didn't but he also makes odd noises too unrelated to trying to speak, he often needs 'bringing back' when called sort of distant but he does give good eye contact which again ds1 didn't. I know its too early to tell but my dh voiced concerns recently to the paed who said he will need to be assessed becasue 1 in 10 children with older asd siblings also have asd, which I though was extremely high.

BTW Coppertop - ds1 will be starting full time as birthday in Oct but I will keep an eye on this becasue he is soooo much worse if tired! Something I've already thought of, but he also sort of needs the stimulation so I think it will be good for him to try full time to start and reduce if not coping?!

He does sort of play with toys - he is so damned placid though that he just sits and is content (like ds1, not NT ds2) which makes me think he is too good, looking back ds1 was an extremely easy baby, got difficult after 1 and a half!!! He wouldn't brum cars though, he would just sit exploring anything given to him! I realise now how ds2 plays is sooooooooooooooo different to how ds1 ever looked at the toys. Thats why if ds1 is asd it makes it hard becasue theres no benchmark!

I know what you mean, too early to tell and even if he is, deal with it when it comes to dx. I say these things but it doesn't stop me wondering!!!!

does your gut say he'll be autistic or not?? dinosaur!

Hi just wanted to say know exactly what you mean about telling people we dont have dx yet but so many professionals think its likely i think its best to start accepting things and taking appropriate steps regarding getting the most help. I have had to break news to dh, my parents mil, one friend of mine and am now contemplating a couple of family friends who are visiting tomorrow. As we live abroad and dont see family on a weekly basis they didnt really notice the changes like i did. It doesnt get any easier every time i have to do it but i feel im doing ds a diservice if i dont, i would rather explain why he wont look at them than people wander or think hes not a happy friendly little man which he is the best. Im very lucky as i attend a small english mother and toddler group where everyone is very friendly and not at all competative but they do ask how old he is and i see them wander(big lad for almost two looks 3 easily)

I was in a similar situation to you, Sax. DS1 diagnosed mild AS or HFA at age 3.5. Took several months before I accepted dx ("why can't he just be shy, like I was" I said to GOSH team.) Initially told only immediate family and very close friends but as time went on told more e.g. other Mums at school when it seemed relevant, e.g. remember a neighbour asking me if it was really necessary to spend so much on private SALT as most kids learn to talk properly by themselves. Well now he's 6 and like Dinosaur's DS doing so well at school I think you'd be hard pushed to think he was anything other than a bit eccentric and sometimes hot-tempered. A freind implied the other day it might be counterproductive to tell too many people becuase the line between autistic behaviour and a 6-year-old's tantrum is such a fine one ... which I am thinking about, but haven't worked it out yet.

Sax, know how you are feeling . My DD 4y10m has been given a diagnosis of high functioninyg ASD. I have an 8 month DD2 and am now watching her like a hawk. Like you, DD1 being the first born I didn't pick up there where any problems. My daughter in fact pointed, socialised etc, etc so never even considered it when young. It started to show up as her language developed. She had difficulty with understanding and conversational skills.
Anyway she was given a diagnosis of HF ASD even though another SALT said it was definately a specific language impairment. Still find it hard to accept. Her cousin, now 24 got a similar diagnosis at same age but has gone on to be a very sucessful university student, fully functioning, talkative- it would never ever enter your head she had this diagnosis if you met her.
Anyway, because of her cousin and because my own DD's symptoms are so mild, I have decided not to let education know of her diagnosis. You have every right to keep the medical diagnosis to yourself if you choose. I have done this because I do not view my daughter as being ASD. She just is who she is. Working in education I also know that once a child has a label some teachers will put down all behaviour of that child as being 'because they are autistic'
Some might think I have my head in the sand and am not accepting things but that is how I feel. Good Luck!

General concensus seems to be don't tell people yet unless it you have to! i think! Trouble is today I am soooo anti it all anyway cos DLA just refused so kind of reiterates the questioning dx again!
Gut feeling about ds3 is no he's not! thank you for everyone putting in their opinion it has been much appreciated.

Sax-I cant beleive you have heard from DLA already-didn't you say you only applied last Tuesday? I am still waiting!
You must appeal the decision-I am sure others on here will be able to give more advice, but apparently the decision is often reversed on appeal.

I know, quick decision - probably cut and dried - you don't need it!!!! i can't appeal, I wrote it all down in the form, worsed day and everything, had loads of advice on how to fill it in etc - I am obviously just not entitled after all maybe he is too good, just me that finds him hard to cope with sometimes but thats my problem. Its not a good day!

I still think you should appeal Sax-many people are turned down in the first instance. It does not mean you are not entitled-the people who process the forms in the first instance are not medically qualified and probably have no knowledge of ASDs. As I say, there are others on here who are much more experienced than I am but I am sure they would advise the same thing.

Maybe I'm not entitled!!!

That happened to me, I got turned down as well with my first attempt. I was furious, my ds's paeditrician advised me to apply in the first place. So I wrote a 4 page letter explaining absolutely everything on how his ASD effects him, and got aawrded the highest rate. I know it doesn't make sense but you just got to try again.

But I really painted the worst possible moments and they still refused - he does have a dx of autism but I am so confused becasue I doubt the dx but I didn't let that show on the form - it was conclusive about the difficult moments. So, why have we been refused if we could get it? i just don't know anymore, really hacked off!

BTW our last page other people were the senco at the nursery and the paediatrition who dx him, I thought this would be enough, plus I included three pieces of evidence from the EP and two from the paed. FFS I have had enough of all this shit!

Dont be downhearted Sax. They turn down a lot of people in the first instance, hoping I am sure that they will be put off and not bother to appeal. But so many get through at the next stage it really is worth giving it a try. You have nothing to lose!

Hi Sax I would definitely appeal, the dla people who are assess are office workers and have no specific medical background, the fact that your ds has been diagnosed by specialists should be sufficient for your to get dla, we claimed for dd at age 7 and got the higher rate care component and low mobility too, I do think this was to do with her being older as they do compare the child to a nt child the same age. I also think the fact that our paed filled in the back saying that asd was a life long mental illness got it across to them. Hope you get it sorted