Fed up of the unreal world of being pre-diagnosis.(ASD)

[TotalChaos]

DS is 3.10, has severely delayed speech and comprehension, and I think a diagnosis of HFA is on the cards. 10 months down the NHS line, and 18 months after I first became concerned, we've managed to have one inconclusive SALT appointment, and it's now uncertain whether he even will be seen by joint clinic (paed/ed psych). It's like la la land - officially, noone is showing any interest in offering any help or support - while the gulf between DS and his peers widens. I am so so troubled by worries about how he will cope in Reception in September. I have tried my best to quiz schools about their attitudes towards SN/speech problems, but I suppose I have little faith that the system locally will offer adequate support, given the little that has happened so far. Anyone got any advice about how to cope?

TC just seen this now, letter and BIBIC pack will be sent over this evening if that's OK? (will scan and e-mail BIBIC pack, get to you quicker)

And if you DO come to BIBIC let me know- I can easily meet up with you if you want- compare offspring LOL!

another one in limbo with my ds, who "has asd traits" according to paediatric consultant we saw last august, but we are waiting on psych app.

my ds goes to mainstream nursery so he is in the system in some ways and getting a fair bit of support, his nursery is attached to the school he will eventually go to the August after his 5th birthday(scotland)

do you have an idea of which school you want your child to go to TC? can you go and see the school and try and get some help from them?

Ds's school have been very proactive in getting my ds help, but I think I am quite lucky in that respect.. he now has one to one(after being at nursery for 6 months) and he has early years support teacher at least once a week and salt goes in too(in 7.5 hrs of nursery)

TC - I'd stick with the ASD group if you're looking for a SN group- I think you'll struggle to find an AS one for a pre-school child. Children with ASD vary so much in the pre-school years - it's so hard to predict how they will develop. At 2 we were told ds1 'definitely wasn't' autistic - and the whole 'oh he's too sociable' thing continued for ages. In many ways he doesn't come across as having what people think of as an ASD as he can be very sociable, can have excellent eye contact etc etc but his diagnosis of severe ASD is definitely correct. I know children at 3 who appeared far more 'ASD'-like than him who have streamed past him to become very high functioning. However, there's no point going if you don't feel like you're getting any support. I wouldn't worry about the mutterings about dx- half the time people are just carrying on because they want to feel better about their own child.

I'd agree with yurt, there IS a AS suitable group here (but in school time so cant access for ds1) but they're less common I thnk- besides, language issues= ASD/ HFA not AS dont they? At least to my PAed

Yes that's what I meant to say as well. Diagnostically there should be no language delay for AS, so I think any AS groups would be even less suitable.

Is everyone who attends pre-school? Do remember that everyone is going through a vulnerable time and the comments are often about their own insecurities with their child.

I've found the main use of the groups is to find someone you hit it off with then get direct support via a friendship with them. After years of attending 'support' groups I barely go now (except when I have to as I'm meant to be involved in helping to run one)- especially ASD ones as the issues facing families are so wildly different.

sorry to hack thread but i'm going through stage at the moment with ds who is speech delayed and they think he may have asd although lots of people are telling me he doesnt appear to have traits of asd child

anyway was wandering if somebody may shed some light on what to look out for as he does try to communicate does keep eye contact

but has speech delay and they are wandering about his understanding levels although he can do all i ask of him

so guess i'm just after someones else's opinions without wanting to upset anyone just worrying time thank you

I think the biggest indicator for ds1 was that he couldn't imitate- had to be taught everything hand over hand. He had a lot of comprehension problems but hid them very well

Has he had his SALT assessment? DS3's understanding is more reduced than I thought and after initially rejecting that I ahve realised thats more to do with his and my 'instinctive' bond and routines- just because I can get him to do X and Y only means he understands what I may want of him, not the syntax, iyswim?

I agree with the imitation; ds3 can do a lot but it took a LOT just to teach him one sign as often he was unavailable to me- I could physically hold me but his gaze is on something else and I'm not there to him.

I should point out ds3 doesn't have a formal DX, although we have a letter frm SALt saying they calss his as ASD now, and BIBIC class him as ASD, and he ahs a brotehr with HFA which is obv a genetic flag in itself.

That's different from ds1 though peachy- he just had no concept of imitation. He could look, but he had no idea how it related to him- he didn't learn anything at all by watching others, so he had to be taught to drink out of a cup hand over hand for example. Since learning to imitate last year he has moved on massively- and become much naughtier- he now watches how we turn on the kettle then does it himself for example- he couldn't do that before he had imitation. When he was 2 I would say it was the only signs of the problems ahead. He was/is affectionate, he could understand in context, he didn't point be he gestured well enough, he shared objects of interest (still does- he's always bringing me pictures of bridges for example) but he had no imitation skills at all. For him it was a key sign.

That does sound much like ds3 at 2, but I think he'sprogressing quite well so catching on quicker than I expected now - thankfully!

And thats also the ASd thing isn't it? The sheer ASD variability of the kids. A complete bugger in terms of diagnostic assessment, but a decidedly Good Thing overall. The BIBIC lasy was saying that yesterdaya ctually- that she never knows what to expect when she gets the forsm for the kids; when she started she assumed ASD 4 year old or 8 year old with downs syndrome might be enough info for an idea- now they recognise thats completely not true. So you get ds3 who is a jolly sort and fab to work with, and then ds1 who is far more HF but ahd to be removed halfeway through Day 1 because he was going to bite the nutritinist.

Which of course again is why people can be funny at support groups- there seems in my experience to be an almost protectiveness over the DX in the early stages, partly because most poeple are still a bit in shock, partly becuase poeple are a bit in denial as well and still repeating it to themselves. The Sn rugby group we use is great for thata s it takes all SN kids and you do learn to se the variability of different DX's, and how each child ahs their own problems and strong points- much like the rest of us really.

Actually the weird thing for me over the years is seeing how different the children are - even with the same dx, and even from within the same 'part' of the spectrum. And although I guess they all meet the triad their actual daily difficulties can be so massively different.

cross posted

LOL

Ds1 is very good now at imitating dances and action rhymes, we've used it to help him with his understanding (loads of songs made up to teach him things). He loves hugging and kissing, adores clambering onto any adult's lap to play with their hair or get them to swing him upside down and loves giggling, jumping and crashing into things.
He has severe receptive language delays and whilst his expressive and communicative language is improving, at the moment it's restricted to comments (and often bizarre comments, eg "right a da top, twenty" means he wants to go in a shopping centre's lift. He'll tell you things out of context, so if he suddenly pipes up with "wait a turn a 'wimming" I have to realise he's talking about how he had to wait to go into the swimming pool with his class.
He struggles to understand even basic emotions like "happy" and "sad".
He's almost certaintly hyposensitive in many ways, has the behaviour patterns on a good day of about a two year old (he's 4.5) and started in the reception class last Monday still in nappies. He's very bright in some ways and has lots of difficulties with others.
The point is, is that you could see him for a bit and not automatically think something was wrong if you didn't know what to look for. You'd think "too smiley, too apparently sociable". It's only when you either know what to look for, or see him next to a typical four year old that his differences become clear.
.

Bloody hell bullet- you just described my ds exactly! never met another qwuite like him- he's been dx'd as hyposensitive, and also started school alst Monday! And is 4.5 (july baby), and is about 2 years ors o developmentally

My ds is 3 in a couple of months, and is asd.
I had the pl-ados results today, and he scored 11 total,( I was hoping it would be lower, but it is only a test), so is asd, borderline 'autism'.
He is very sociable, or appears to be, and is always smiling at people. But apart from smiling, he doesn't have any other facial expression, apart from a screaming face. He smiles whne he is uncomfortable, happy, sad, tired, all the time really. So I regularly get people telling me he doesn't look like he is on the spectrum. He can sometimes give good eyecontact too, so people often remark on that too.
I feel out of place everywhere I go with him too, but I am an oddity anyway, so me and my ds suit eachother well!
Retail therapy is great, although I couldn't find anything today, but there is always on-line shopping, so relaxing!

deeja - hope you are feeling OK after the ados - am sure that just the testing process in itself is gruelling enough, regardless of the resutls iyswim.

Thanks all for the different points and perspectives. One point - all the mums there were of older children with ASD, all school age, some senior school age so there wasn't really the case of people being freshly post diagnosis. Not of course that means I should disregard their feelings...

Aefond - he's in between nursery's, starts his new one on 30th. His previous nursery was a bit useless, I think they liked to baby him, encouraged him coming in and hugging the nursery staff . They were very NICE but more babysitters than actively helping him. The school I have as his first choice for September has an extremely good reputation locally - and when I spoke to the head, she was extremely knowledgable and helpful about support to kids with language delays, which hopefully is a good sign. I suspect I will be lobbying for DS to go to a language unit.

bubbla - with DS, what made me think ASD in addition to the speech delay was the echolalia - that he would be quoting chunks of his favourite dvds at random, whilst unable to string a sentence together. Also, I feel his pretend play is a bit basic, and sometimes it's more that he is repeating what he has seen others do rather than being imaginative. DS also has social difficulties - I just don't know how far this is caused by the language delay though.

DS has never had any problems imitating.

Hi TC, we are fortunate in that ds2 also has CP (didn't think i'd ever say that)& GDD so already has physio,OT & SALT so we were not completely reliant on ASD dx for therapy.
His consultant paed has given us dx of ASD/OCD despite the psych not committing to a dx because he's "too sociable & compliant" for a classic ASD dx although the paed says in her opinion he is very autistic.
TBH its a complete PITA, if the so called experts can't agree what chance do we stand
Because ds2 is such a jumbled up mix I've felt most at home at the local sn pre school group, caters for all sn's, regardless of dx or not.
The same with therapists the ones ds2 has got the most from have been those that look at ds2 rather than the diagnostic label.

Your ds has uneven skills (poor language, very good at non verbal skills) which is another indication TC.

TC, a couple of ideas of different avenues to try - ignore me if you have tried already!

Have you asked the local early years area SENCO/advisory teacher to see your ds. Ours is crap but I know in some cases they have been very helpful in securing school places & or properly trained 1 to1 funded support while the statements drag on.

Has your ds had an OT assessment, I have found OT to give the best all round advice & was an invaluable link & advisor to the school when ds2 started helped with everything from language to sensory issues, behavioural as well as the practical/physical stuff. I don't believe ds2 would of settled so well in ms reception without his yr of OT preschool first, they worked so much on confidence & interaction, structure & self help. Ask you HV or GP to refer.

Early years senco went to see DS twice - and was fairly useless. As I had some written advice from Private SALT, early years senco took the view - oh fab, just follow that then. When I phoned up early years for advice about choosing a school I was told 1)they couldn't help me before he was seen by paed 2)All schools deal with special needs these days. DS hasn't had OT assessment - not to sound dim, but does that happen as part of a joint clinic assessment, or would that be extra?

basically the numerous professionals I have tried to pump for info/support have all come out with same line - he's on the waiting list, there's absolutely nothing more you can do for now re:educational placement etc.

DS2 has an OT (community OT) & was refered by HV at my request. Here there are OT's at the joint clinic/CDC, community paed OT'S & school OT'S.
Not sure how you find out who has the shortest list though.
Your pre school regional SENCO sounds as useless as ours she said as DS2 did not disrupt a classroom he wouldn't need a statement

Took ds3 ages to see OT (DS1 never got to, but the one at ds3's appt had a quick chat and recommended special cutlery etc)- I never saw it as an important thing tbh, imagine my shock becuase it turns out she is providings chool (temporarily so will have to look at funding optins) with special chair, table and mat