can someone who knows more about pdd-nos or autism please offer me some help

[bubblagirl]

my ds as you all know has just been classed as atypical in his development has speech delay but poor understanding on the simple things

right i'll tell you how he is and someone please tell me what you think as seeing his child doctor tomorrow and if sounds like more than speech delay i want to raise concerns as i'm sick of waiting as a yr later still no SALT and playschool are getting concerened

he has no repetitive behaviour is is loving and keeps eye contact

to get his attention if his not doing something can be fine otherwise you have to actually move his face to yours as he just appears to not hear you

does not understand things such as what is your name but can follow instructions

at playschool can follow instructions but only if asked one to one otherwise doesnt seem to understand

speech is delayed and cannot pronounce words mainly start with a k or g so goat gog the guilder

knows his numbers and alphabet

has great concentration but a bit too good as doesnt notice anything else around him

i think ive been in denial as everyone keeps telling me theres nothing wrong with him his just a bit slower but begginning to realise as bright as he is physically at same level as peers but communication and understanding wise so far behind

i heard lady on here mention pdd-nos and never heard of it before but he seems to tock most boxes

i'm going to mention it anyway but just wandered if any body thinks my ds sounds like there dc and have they been diagnosed as i'm sick of being fobbed off i just want whats best for him so we can get him the help he needs to progress

thank you

he is so loving but i'm just noticing simple things such as say hello he doesnt get but knows bye whats your name he tends to jusdt copy questions instead of asking

could that just be the fact his learning speech or should he know how to answer he is 3 next month

Hi bubblagirl

I don't post on MN anymore but always read the SN forum. My middle DS has similar issues to yours and the SN forum has really helped me through some dark days.

DS2 is delayed in speech and understanding by about 6 months (he will be 3 in May). Must admit that his speech and understanding has come on a great deal and although he is not yet up with his peers language-wise, he is socialising with them at the same level now.

His first nursery raised some issues , some of which we agreed with, others we totally disregarded, and it has to be said at his new nursery, they have said he is getting on brilliantly and they cannot see any issues (and this new nursery has a much better Senco ). SALT thinks it's just a delay, but I think he is a little 'different' from his peers.

Can you ask to have Ds referred to a development paed? My SALT was not at all keen, but she has referred him at my insistance. I know the waiting list can be long, but it might be worth considering.

Sorry you are feeling so low, but the improvements I have seen in DS2 over the last 6 months are amazing and so I am in a much better place than I was before. I am mainly referring so that if there are any issues, they can be flagged up and support put in place before he starts school.

Take carex

PS - I think what also makes it difficult is that I cannot remember what questions the average 3 year old is supposed to understand, depsite that fact I have DS1 who is 6. DS2 does understand what is your name and a lot of instructions, but this has only come on in the last 6 months. Re the say hello, a lot of NT pre-schoolers don't answer that question. Are you sure that he does not understand that one?

Anwyay, I'll stop waffling, but hopefully someone on here will have better info for you.

If in any doubt whatosever, ask for a paed/CDC referral - as it can take up to 18 months to see someone if you are very unlucky (some areas are much better, it's only a few months) bit of a postcode lottery. Much better to be seen as a neurotic mum and be told all is well, than for your child to slip through the system.

yes i agree thank you he has made huge progress but i'm just worried if i dont act on it then it'll be left to late

i'm not sure if he understands the hello but will not say hello back to anybody

he does understand what you say but has to be told on a one to one or he just doesnt understand what your asking and sometimes just takes a while to grasp his attention when his doing something

well i'llvoice my fears tomorrow and see what they can do for me as i dont want thim falling any further behind than he is still very delayed with speech but has come on great

thanks for replies x

Some of those things sound familiar. The eye contact and being affectionate won't necessarily be relevant though. My two (ASD/AS) are both affectionate and generally have good eye contact now.

Ds1 in particular was never very good with group instructions as he didn't realise he was being spoken to. You had to get his attention individually and then use simple language so that he could understand.

Ds2 is/was the same with concentration. Generally he flits about a lot but if something really interested him he would sit and concentrate on it for a long time, to the exclusion of everything and everyone else.

Ds2 could understand very simple instructions at that age but nothing complicated. As a comparison, dd (NT) understood more when she was 18mths old than her brothers did at twice that age.

Ds1 was fascinated with letters and words. Ds2 has always been very interested in numbers.

The copying of questions was something that ds1 did when he was just starting to use language. If you said "Do you want a biscuit?" he would reply "Biscuit" or "Want a biscuit?" If asked "What's your name?" he would answer "Name".

It's hard to tell from here whether your ds might have ASD or PDD-NOS but it certainly sounds as though it's worth asking for a full multi-disciplinary assessment.

Sorry you're having such a tough time. xxx

thank you coppertop

its really hard as SALT have classed his actions as atypical speech is atypical and social interaction is atypical and attention is is singal channeled

dont mean to be rude but how do your ds function now against there peers i'm so scared that he will not fit in or make friends

i myself dont mind but i want the best for him i'll love him no matter what but would love to know that he will go on to live happy life with friends and not always struggle and be behind

either way his my adorable little boy and he does understand alot always has done such as go get shoes, wash face ,brush teeth go get cup for mummy etc

its just the simlar things he doesnt appear to understand at pre school i'm wandering whether maybe he does he just doesnt do it

the geting his attention thing he does at home and the concentrating on something for along time but my main concern is his understanding really hope it improves so he can mix with his peers

i'm going on dont want to look like i would be unhappy if he didnt but for him i would be sad i would do anything in my power to make sure he gets the best and lives as fully as he possibly can

thanks again how old are your ds? xx

Hi bubblagirl i agree with TC that you should ask for referral, sorry you are feeling so down and confused it's not nice is it. My ds has some similarites to yours and we are due to start assessment begin May.
Coppertop your Ds1 sounds very like my ds, spooky actually...

thanks monkeypie will ask her tomorrow as i just want him to get help he needs asap hope all goes well with your ds its so worrying xx

Hi Bubbla,its shiny here,i know just how you feel as youwell know,My Ds has got his second developmental assesment next month at the last one they just said social and communication difficulties,and next week a mmeting with salt to discuss his progress which to be honest im dreading.Hugs to you and your Dsxxxx.

Agree you should ask for a referral. PDD-NOS tends not to be diagnosed in the UK that often (although I don't know why not as I think it can be a useful diagnosis). Have a look at semantic pragmatic disorder as well. See whether you think that ticks some boxes.

Loving and eye contact isn't really that relevant for diagnosis and ime repetitive behaviours can be limited when little or at least less obvious.

What's his play like generally?

thanks shiny

hi is doing well but so worried as stilol so far behind its reassuring that he is progressing but were just not anywhere where we should be

the more i read up the more i feel just maybe there is something more going on dont want to wait another six months thats all i hear in six months he'll be 3 and half would hate for him to have missed out on any help in that time as its been a yr and still no help as SALT say no point in doing any SALT as his understanding needs to improve how long could that take

and also the whole not reaqlsing his being spoken to when in group actually having top talk to him personally before he understands

convinced myself all was ok but i have days where i think i just know somethings not right i dont know what but something

i hope all goes well with you shiny i'm that little bit ahead of you in terms of ds age but would still like to be able for us to talk as we both may get told things that could help each other

yurt1 this morning is the morning so i have serious butterflies silly really feel like i'[m going to walk in and just cry when she asks how he is

she has SALT report so will have some kind of idea as his classed as atypical for most things i will just tell her how i feel about waiting 6 mths at a time as nothing is being done in between and as his mum i want him to progress and in my mind i cannot do this alone

thasnks all will write later and let you know how he got on xx

I think it's absolutely disgraceful that SALT "say no point in doing any SALT as his understanding needs to improve". Part of SALT is to help advise you about how to help his understanding! DS speech has much much improved over the last year - but he still has problems understanding - so he is being referred to a more specialised team within SALT department to unpick this. My point being that whilst the understanding difficulties are of course concerning, it doesn't mean that the expressive speech can't still be worked on. At 36 months DS spoke in single words with a handful of two word phrases. Almost a year later, his sentence length is age appropriate - he can say things like "I want mummy run on grass" or "I got cough". This improvement is STILL with glaring issues with his understanding/ability to converse.

If you have any sparish cash at all, I would seriously think about getting some private SALT advice - you could get a report and program for about £100 to £150, with further appointments for about £50.

One thing that helped HUGELY with DS expressive speech was use of PECs symbols to help him build up sentences - so I + want + biscuits, which has progresseed to I + want + help to I + want+ mummy + read + book.

sorry for the rant and ramble, good luck with the GP appointment this morning.

thanks i know i thought it was crazy ive been asessed for a yr with SALT and still no further my community nurse hv came out to help me as i was in limbo so that was really nice she didnt have to do that she helped ds alot

well ive seen doctor now and she wants to refer us as she spotted his understanding isnt as should and was difficult to grasp his attention at times

the team specialise in severe speech disorder and will be assess for everything

so i'm feeling slightly unsure how i'm feeling right now part of me wants to keep crying and part of me is relieved he may finally get help he deserves

its weird not sure how to feel at the moment i looka t my adoreable boy and just hope that he will grow up and be able to join in with peers on same level his so adoreable

not me personally my ds has been under SALT for a yr its just all been assessments and things i can do at home with him and thats it

bubbla - glad your GP was on the ball and didn't just fob you off. Am at a virtually identical stage with DS re:referrals following last week's salt observation at nursery. On the one hand you feel - it's good he's hopefully going to be getting some proper help from people with right experience BUT it's still a kick in the teeth to feel that your kid's not developing typically, and that a professional thinks so too. You have your gorgeous boy, and see him at the playground/zoo/playing with his trains etc, happy and think - how can anyone be thinking there's anything wrong with him - but then the depressing thing about SALT and appointments is that because they are there to help your kid improve, you feel it's all about what your kid can't do, and seeing all the negatives.

Bubblagirl - Ds1 is now 7yrs and ds2 is now 5yrs. Ds1 is very happy with his own company but also has a couple of friends - one girl and one boy. Ds2 has a very different personality and is a bit of a 'people magnet'. He has a group of friends and seems to be popular. The boys especially seem to admire the way he is fearless (ie has no sense of danger!), and is an authority on things like Star Wars, Spiderman, Ben 10 etc.

Ds1 still needs extra help at school with things like handwriting and sensory problems but is generally doing very well. Ds2 enjoys school too and is also doing well. He still has help from the SALT to improve his understanding of language but his spoken language is very good.

Monkeypie - It's strange isn't in? I don't know any children IRL who are like ds1 and ds2, but here on MN there seem to be quite a few who are very similar. It's one of the things I love about the SN board.

it has helped me so much coming on here for people to share there stories as i have no one to talk to who will inderstand how i'm feeling how lost i feel at the moment as i have days when i think no his fine nothing wrong

then i have the days when i sit and cry as it can be obvious somethings not quite right

totalchaos how old is your ds?

i am pleased people are listening now and am going to get help that he will benefit from as its just been a waiting game where i think with right help he could have progressed so much further than he has

but glad he is progressing and hopefully in near future he will be at a level i can have a conversation with him thats what upsets me most i think when you see mums and toddlers in converstaion

coppertop your ds sound adorable and really glad that they are progressing and socialy doing well as thats what i hope for my ds he does play alongside and want to interract with other children so i guess once he gets the right help this will help him do that

xx

x

good evenin g just popped ds to bed he was so different today interacting with his cousin who cam eto play

makes me feel so confused but at least he is doing these things i'm glad he will be referred so he can be assessed properly

just fel really lost at the moment as friends just say oh really he'll be ok

so glad i can come on here where people really know how i'm feeling thank you

how lomg normally does a referral take as would hate to just be in limbo for another 6 mths

I think it's different everywhere you live bubblagirl. When we were referred for pead it took about 3 months. but referral for asd assessment has taken 6 months
The sooner you get the ball rolling the better, for you and your ds, makes you feel a bit better knowing you are trying to the best you can instead of convincing yourself it will all be ok on it's own(i'm sure most of us do it for a while, i know i did)

DS is 3.11. The waiting times vary from area to area - phone them up to ask, they won't mind. I've been told that it will be a few months for the appointment with the specialist speech therapy team, and five months for the ed psych. Allegedly if he does get a joint clinic referral it will only be a couple of months wait, as he was referred last March then took off the list , so if he goes back on the list he goes to the top.

its so annoying all the waiting and they could be recieving so much help and be progressing so much quicker

well i hope that it wont take too long as really just want him to be helped now

TC how annoying to be taken off the list i would be also

im going to make sure i check up and make sure they are moving things on as they should be and lets hope in the next couple of months we'll know we stand

i'm hoping he'll keep progressing on his own in that time also and i'll do all i can with him at home

thanks again please let me know how your ds's get on and i'll keep you informed hope you dont mind if i rant on here every now and then as i have so many different emotions and no one to understand me so it feels really nice to know others know exactly where i'm coming from that alone is a relief for me

is it normal to jsut feel so sad and how do you make your self see things more positively or will it just happen over time

maybe the determination for getting the best for your child overtakes any other feelings

xx

It's a question of time and of focussing on your own child as an individual, and the changes and improvements, rather than comparing your child's speech to "normal" children. Every so often I get despondent at how far behind DS seems to be, but I think that's par for the course, and it's best to acccept that and allow myself the odd wallow.