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DS supected asd??no one helping..

(17 Posts)
Clarabumps Wed 10-Oct-12 13:04:07

I suspect ds 3.9 is asd. I'm not sure however and no one seems to be helping me at all. I am at the end of my rope.
Ds has always been a late developer. He didn't sit up until nearly a year old. At the age of two he only said around 5 words and it is only not that he is saying 2 word phrases.

He can recite paragraphs from Toy Story etc but does not make sentences on his own. Half the time I feel like he is on his own wee world. Any interaction is only on his terms. Its as if he zones out. He has just started nursery( has been at a playgroup for 2 years however) and they have referred him for and educational psychologist assessment. He has been having SALT for over a year however the SALT has been pretty useless. SHe has seen him twice and her only advice has been "all kids develop at different rates" and "just add words onto the end of sentences" to increase his vocabulary. Duh!!

When he was about 2 he liked spinning a lot. He never pointed and wanted to see things. He will point now and repeat words that you say but he easily forgets what the name of things are. He just never seemed interested in anything really apart from hinges on doors, drawers cupboards. He used to line things up and inspect thing very closely. He doesnt line things up as much but he still looks at things up at his face.

I cannot explain anything to him as he gets very upset. For example, waiting for anything is a nightmare. He mainly speaks in gibberish. I am currently awaiting a tier 2 paediatric assessment but have been fobbed off at every turn by the health professionals.

He cannot read facial expressions and gets really confused when I give him into trouble and just plain ignores me when I tell him to stop things. He also makes this noise like "grrrrrrrrn" when running around the house. I have noticed he does this more often when he is stressed.

Nursery have told me that he only really interacts with children when they have a toy or something that he wants. He has good eye contact and is affectionate when he wants to be.

When asked he cannot tell you his name. He knows who I am but he does not know "my name is mummy" iyswim. When I ask him "whats my name" he doesnt answer.

He very rarely communicates unless its to communicate a need like juice, food etc.

He only eats tomato pasta, chicken nuggets and cheerios. He has never tried a piece of fruit. He won't even try anything else. He won't even put it in his mouth. He loves textures.

I don't know what to expect from this assessment. I just want to know if anyone else has experience this and/or the assessment and how it went. I'm so worried. I've felt in my bones that something is "wrong" and my health visitor has palmed me off for months now.
Sorry this is so long I'm just looking for some advice or just to talk to someone who knows more about this as I'm wandering in the dark at the moment.

Thank you if you have read this far!! smile

glitch Wed 10-Oct-12 13:23:17

My DS was diagnosed at a similar age to your DS.
Have you heard anything back from his pre-school about how long they expect to wait for the Ed Psch appointment? It may be worth them (and you) chasing them up.
It is good you have a paeds appointment in the pipeine too. Again, I would be following it up and finding out when it is going to be.
I think Paed appointments all seem to be different. When we saw my DS's she pretty much knew there and then and just needed to observe him in his pre-school to confirm what she suspected.
Just keep shouting and pestering everyone. I know it feels a bit like you are a pushy parent but it does help you to get your DS help quicker. (what a system!!!)

Handywoman Wed 10-Oct-12 13:26:28

Sounds like you have been having a very frustrating time with your HCPs. What is a 'Tier 2 Paediatric Assessment'? Do you know who will be there?

I would speak to nursery ASAP and ask them to document what they have observed about his social communication and provide it to whoever is assessing at the Paediatric Assessment. SLT sounds completely useless – if you can afford it you can find yourself a private SLT by looking on www.helpwithtalking.com and this will mean there is someone else to assess, make recommendations about ways to develop his communication and what other referrals might be appropriate (whether he ought to be seen by a Developmental Paediatrician).

Hopefully you will get somewhere at the Paediatric Assessment, is it soon?

HTH, Handywoman x

chocjunkie Wed 10-Oct-12 13:37:18

hi there, sorry you are going through this. I have a DD (4) with autism. we have had a similar battle to get her diagnosed...

do you know when you have the paed assessment? and when will the EP see your DS?

as your son will start school next year, he will probably need a lot of extra support. I would get the ball rolling and apply for a statutory assessment to get him statemented now. This process takes min 6 months but often much longer. as your son will start reception in less than a year its better to get the ball rolling. IPSEA have a template letter on their website - {{http://www.ipsea.org.uk/what-you-need-to-know/sen/statutory-assessment.aspx.aspx HERE]] .

Clarabumps Wed 10-Oct-12 13:56:32

Thats the thing I have no idea what goes on during the assesment. I had a private SALT some and see him last year and diagnosed him with developmental delay which the HV then said was "a load of rubbish".
He is a February birth so luckily we can defer school for another year( we're in scotland) so we'll have more time however its a battle to get him to do basic things like lining up for gymtime etc. The assessment is around the 25th October.
I was referred at the beginning of July and found out on Monday that the SALT actually hadn't referred him at all...long story short after many strong worded emails I have been given a referral. Just awaiting the letter confirming the date.
I just feel exhausted and sick to the back teeth already..The EP referral will be sometime after I think as he was only referred three weeks ago by the nursery.
I have asked the SALT what the assessment will consist of however she is very vague. Apparently a SALT and a Paed will be in and they will speak with him and the have a chat to me.
Sorry for the lack of information. My head is up my bum at the moment and I've been up all night with my 6 weeks old daughter.

prettybird Wed 10-Oct-12 14:01:38

When he is a wee bit older (once he starts at school), and if you are in/near Glasgow, there is an ASD Rugby session on Sunday mornings at Cartha QP Rugby Club (just off J1 of the M7. It's free (support by Glasgow City Council) and I know that the parents who go to it say it has both helped their kids and also been good to get support from other parents.

Not much help now, but something to think about in the future.

chocjunkie Wed 10-Oct-12 14:04:22

i see. you could not get him statemented anyways if you are in scotland...

what kind of assessment is the paed assessment? more a general developmental assessment? ASD assessment? when my DD had the ADOS (assessment for ASD) we were given quite a lot of information beforehand as to what to expect.

can you give the department a ring to get some more details?

madwomanintheattic Wed 10-Oct-12 14:42:43

Ok, we'll, being realistic, you aren't actually being fobbed off. You have had slt since before his third birthday, and you he is about to have a paed assessment, and an Ed psych assessment. He isn't yet 4.

It is deeply frustrating that the health professionals have such long waiting lists (and yes, some of the service is patchy and a bit crap) but to say you are being fobbed off is not actually the case. Fobbed off would be a family with the child still not having managed to get a referral done, despite concerns.

It is extremely frustrating, but sometimes these things are slow to get moving. In borderline or not clear cut cases, it isn't unusual for professionals to give little kids a year or so to mature. Sure, some children are dx v early, but the majority really aren't. You are actually quite far ahead of the drag curve in terms of the kids who don't even get picked up until school.

The paed will be collecting complete life history from you, so the best thing you can do is write every tiny little thing down to regurgitate at the assessment. It will be useful, because every single professional you meet in the future will ask you the exact same questions. grin

Call the paed's secretary and ask any questions you want to, they are a gold mine of information. You can always request referrals through your gp until you have a paed. (Second referral from gp might be a good idea anyway - not sure who was doing the original one? Slt? Why not gp?)

It sometimes takes the system a while to grind into gear. But it is getting there.

Don't forget, you can always read up and implement some of the strategies in any case - they will not be detrimental if he turns out to be nt. and tbh, you may end up doing most things yourself anyway, as even with a dx there may not be much support available. It's easier to access with a label, but not a complete magic door opener.

Clarabumps Wed 10-Oct-12 15:04:51

I'm not saying that now the referral is in place that i'm being fobbed off. I was trying to say that the SALT has not done her job. I have been researching myself with regard to techniques to employ with him. I have bought the Hanen It takes two to talk textbook and have been using this. What I was trying to highlight was the fact that despite around 20+ visits to the Hv regarding ds development.

The HV told me she would not refer me as she didn't like to "label" a child. I was a bit confused as surely if there was anything up then early intervention would be the best course of action . I have been told repeatedly that there is nothing wrong with him and i have no cause for concern. I feel differently obviously. I have been told to leave this to the professionals however the professional HV said there was no cause for concern which the nursery obviously didn't agree with.

What she is forgetting is that she is not a professional in asd so therefore it is not her call as to weather my son has asd tendencies or not. Surely if a mother has concerns then they should be addressed. It is only when i visited the SALT as said I wasn't leaving without a referral, did she refer me.

Anyway i have a referral now so mission accomplished i suppose but i just wonder how many people take HV word as law and don't push to have thing taken further.

Whenever I have spoken to any health professional they have been very vague..i only just found out i was able to self refer.had i know this i would have done this when he failed his two year check.

I spend so much time looking for ways/techniques that might work with him regarding his understanding however i don't know what i am looking for really as i don't have a dx.

Thanks prettybird i'll take note of that.

chocjunkie- i think i will call them and find out more information as SALT doesn't seem to know.

i'll try and get a second referral. I have taken ds to the Gp who then passed me onto the HV as she said she was more specialist with children. The Hv then said there was nothing wrong with him. i then had to push for a hearing test which she didnt want to do as he answered me when i shouted. I told her he appeared deaf at times and she said all kids ignored their parents. I then went back to the Gp and she said I should have his hearing checked before she could refer(which he passed last Thursday).

sorry if i'm rambling but I have been passed from pillar to post with no one wanting to refer and everyone saying that its not their domain.

apologies for the lack of punctuation. i'm typing one handed while holding a baby

madwomanintheattic Wed 10-Oct-12 15:42:20

It's kind of standard, though. That was my point. Unless something is absolutely crystal clear in the early years, most health professionals will adopt a 'wait and see' stance, even in cases where there is an obviously severe disability - a catch all of 'developmental delay' will be used until some one decides there will be no catching up.

(We waited two years for a dx of cerebral palsy)
(Ds1 wasn't dx ADHD and aspergers, anxieties and phobias until he was almost 10, after every single teacher had exclaimed about him since day 1)

Nothing at all happens in the world of sn unless parents push for it. And then it can still take years.

The system is crammed full to bursting with children of all sorts of issues, and he who shouts loudest will occasionally get seen first. Your best (and frankly only) option, is to research until you can research no more, and learn everything you can about the system, and use it to try to get support. You will of course have to suck up that in doing so, you will be trampling roughshod over children who do not have such capable advocates. But it really is the only way to do it. Unless you do everything private, and then attempt a later entry into the state system.

It's pretty grim, but on the whole, you are really not doing too badly. You're almost in - make the most of the paed assessment.

madwomanintheattic Wed 10-Oct-12 15:45:50

(Do you know who is the diagnostic authority in your area? Some use paed's and some use camhs for asd. It would be worth knowing to make sure you ultimately end up on the right place.) every area is different. There isn't one path nationally.

Have you contacted your local branch of NAS? They often run early years support coffee groups etc. they also usually have an extensive library that is accessible.

Clarabumps Wed 10-Oct-12 16:25:01

Thanks so much for all your advice! i guess i'm thinking in an ideal world type scenario. i just didn't think people would be so quick to dismiss a mothers concerns. naive i know.
i'm sorry it took so long for your dx for your dc. how did you cope with the waiting?? i'm trying to immerse myself in learning more about this and try and get knowledgable.
you've obviously a lot further down the road than I so thank you for taking the time to explain things to me.
you know how it is when you are so close to the problem, all you see is the fact that your child isn't getting the help and not the bigger picture.
sorry if i've came across as abrasive in that last post..this is all so new..and i'm stressed. i really didnt mean to come across that way- i'm thankful for any advice i can get.
i guess i need to accept the reality that its not going to be easy.
thanks

osospecial Wed 10-Oct-12 17:07:08

Just wanted to say, you mentioned you had the Hanen it takes two book, there is also a very good book by Hanen called 'more than words' I found this worked much better with my dd as it takes into consideration things like the fact that it's very hard to get their attention and interaction when they are in their own world a lot of the time etc. It has good ideas and also taught me a bit about sensory issues, why dd does the things that she does and things like echolalia (just repeating what other say) it's around £36 but it's definitely worth it in my opinion as you have to do the majority of speech therapy at home yourself. I know how stressful it is, we are waiting to see paed as well, dd is 3.1, it must be so much harder dealing with it with a newborn baby and lack of sleep as well! Good luck, hope you get somewhere soon x

prettybird Wed 10-Oct-12 17:22:05

BTW: you don't need to have a diagnosis to go to the ASD rugby!

One of the parents, whose kid had been (and still does) been going to the regular rugby started going to the ASD sessions on the advice of the coaches. He now goes to both sessions - the ASD with a more structured approach and then stays on for the regular rugby.

In fact, in P4 her ds was sent to the Toryglen Autism Unit before a formal diagnosis (she asked on here for advice and people were astounded that she could get this without a diagnosis). She finally formally got a diagnosis last year - and like you, it took lots of nagging of the GP to get a referral.

squidworth Wed 10-Oct-12 17:55:24

Even with early dx the service are limited, ds2 dx just before three and the only intervention was early bird, and salt once a month. You are doing the right things but services are shocking and we had to research are own interventions.

madwomanintheattic Wed 10-Oct-12 18:25:42

Oh Clara, no need to apologise. The whole sn shambles is a bit of a shock at first - it really ought to be easy enough to access support if it is needed, but the hierarchy of need v cost means that neither health nor education has the resources they require to provide an adequate service for the number of children that would benefit, let alone a good service.

But getting in, and making the most of opportunities, is paramount.

Oh, and congratulations on the birth of dd x smile

TheLightPassenger Wed 10-Oct-12 18:42:49

Yeah my experiences were similar with my DS (he only ever got a DX of autistic traits, not ASD, though) . Fobbed off until 36 months by HV/GP, then no NHS salt till 3.9, no NHS paed till 4.2. So as Madwoman says unfortunately these timescales are not unusual but that doesn't make it right! HV does sound particularly unhelpful and I am shocked that you are struggling to get a hearing test, given that it's the obvious first step to rule out hearing problem as cause of a language delay. Ultimately Madwoman is right, that it's best to continue being as clued up as you are (having got hold of the Hanen stuff off your own bat) and being prepared to put in a lot of the work yourself.

At this stage with DS I found that it was 1-1 work with DS that helped bring him on, that a lot of the take him to toddler group type well meaning advice was hooey. I'ld say the key issue is to get on top of where he is at with both expressive and receptive language. So to help build up to longer phrases, if he has mainly nouns to start building up verbs and noun-verb phrases, and to get an idea of how much he understands, so you can add visual gestures/signs/photos to help him understand. You might also want to consider some of the sing and sign type dvds if your DS enjoys watching telly, as the baby sign, when used along with words can help with learning new vocab.

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