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'Possibly on THE spectrum'....

(40 Posts)
humanoctopus Thu 26-May-11 15:16:24

I have a gorgeous 3 year old ds.

Loves cuddles, super smiley, etc.

His speech is practically incomprehensible (doesn't bother him, no frustrated 'not getting understood' tantrums, iykwim).

He usually repeats the last word you say in a sentence ('do you want a sandwich? Him: sandwich.')

He has a funny walk, mostly his feet point inwards, but he still manages to run like the wind, climb, etc.

He is generally considered by people who meet us as looking very young for a 3 year old (ie, he does look like a 2 or even 1 and a half year old).

He had the usual developmental check up, and then the nurse was all concerned and gave us the communication parental questionnaire (preparation for further investigation). He scored poorly on that, I really felt that I was consigning him to be labelled. When I asked why I was filling out this questionnaire, she told me that he was possibly on THE spectrum. Then she had to fly off somewhere.

I know he is behind, but am feeling a little down about him now.

Its likely that we will have to wait 3 months + to begin an assessment process.

What do ye mumsnetters think?

Any input greatly appreciated.

catherinea1971 Thu 26-May-11 15:43:02

Hi humanoctopus, try not to feel down, hopefully your little one will get some help now.
I would go and see you gp asap and tell him you want to be referred to a developmental paed and for speech therapy. I'm not sure if it different in other areas but where I live you can call and refer yourself for speech therapy. When you get to arrange any appointments always say that you will take a late cancellation, sometimes you can be seen months quicker this way.
Is your ds in pre-school yet?
'The spectrum' sounds really scary and the nurse (or was it a health visitor) cannot diagnose and in my opinion (I'm a nurse myself) she should not have really mentioned it to you.
Also don't think of it as labeling, you are looking for answers to the problems he faces so that you can help him, if he gets a 'label' along the way then it is likely to get him more help IME.

IndigoBell Thu 26-May-11 15:43:55

I think he either is or isn't on the spectrum. And he's still your gorgeous boy smile

Not really much else I can say from what you've told us.

Why will you have to wait 3 months? Who has he been referred to?

Does he go to playgroup or nursery? Do they have concerns about him?

humanoctopus Thu 26-May-11 16:02:27

He goes to playgroup, and the wonderful staff there do feel (when I asked them to be honest!!) that he is a good bit behind in every area. They specifically mentioned the repeating of words, lack of concern and emotion if another child closeby gets hurt or upset, and lack of eye contact.

Occasionally I do feel that he is a bit remote from his surroundings/peers.

The wait for services in our area is approximately three months (shorter if you go private).

Some days I feel that he is just being a typical 3 year old, other days all I can see are 'issues'.

Filling out that damn questionnaire has me feeling all insecure. Its horrible putting in writing/ticking boxes about such important stuff sad

smileANDwave2000 Thu 26-May-11 16:02:47

its not for us to say humanoctopus but were here if you need further chats or advice once your more sure what you might be dealing with whatever it is or isnt someones on mn 24/7 so pop in and out the threads are very helpful and often thought prevoking

IndigoBell Thu 26-May-11 16:05:22

My advice would be to listen to what your playgroup staff are saying.

If he was a typical 3 year old they would have said that.....

humanoctopus Thu 26-May-11 16:07:36

Thanks smileand wave

I wouldn't expect a diagnosis, but its nice to bounce his stuff off the people here. My family wouldn't be very tolerant or supportive when it comes to children not being 'up to scratch'.

I just wanted to get a bit of info/ideas.

pedalpants Thu 26-May-11 16:25:33

spectrum for what? he doesn't sound particularly autistic to me, though I'm no expert at all. if he is cuddly and smiley and not frustrated by stuff that all sounds good. the funny walk thing is a bit odd and the lack of eye contact. did he walk late? and how were his other milestones? 3 months is a long wait but I've waited longer for things so you have to keep busy in the meantime doing positive things like good food, good play. I think observing their play at this age can be really helpful, like just silently 'being' with them, not taking over, and occasionally commenting on what they are doing e.g 'i see you are putting the car in the garage now'. you feel like its the most boring thing in the world but i found it helped me bond with my son.

IndigoBell Thu 26-May-11 16:33:57

pedalpants - the playgroup said They specifically mentioned the repeating of words, lack of concern and emotion if another child closeby gets hurt or upset, and lack of eye contact.

All of those sound like indicators of ASD.

+ he has speech issues.

No one here can or would dx - but at the same time it would be equally cruel to pretend everything was normal when all the professionals are telling her the opposite.

The OP will get enough of that (pretending everything's fine) in RL....

BagPuss71 Thu 26-May-11 16:48:31

My DS has ASD. He had no speech really until he was about 4, repetitive play, very routine based, plus loads more things! I realised he had ASD when he was about 2 but it took ages to get a dx.

He is 6 now and doing brilliantly in mainstream school with a SEN. He talks non stop and yesterday did a reading in school assembly (so proud - a day I never thought would come when he was 3).

The point is that all children the same age as your DC has some traits of ASD so don't be too concerned about that. But even if he is on the spectrum, and its a big if because like pedalpants he doesn't sound paticularly autistic to me either, there is a way forward and he is still your lovely DS whatever label he might get. I adore my DS and everything about him including the ASD part and I wouldn't change him for anything.

smileANDwave2000 Thu 26-May-11 16:49:57

so true unfortunately hey indigobell sad we get ignored fobbed off told were being overbearing one min then not doing enough by the next so called "professional" we are treated as if were clueless or mollycoddling obviously there are a few things it could be or maybe it isnt who knows for sure but somethings going on us mums know dont we , and im sure your determined enough and a good mum so you will get there , in meantime try not to worry (easily said i know) but were here with you and all know just what your feeling its not an easy road and contrary to belief noone WANTS a dx but we do want help and assistance to get whats rightfully theirs ie good health and good education and hopefully a well rounded human being one day

humanoctopus Thu 26-May-11 16:52:54

So far, I'm not looking to change him, he is totally brilliantly loveable the way he is.

I am worried that maybe I have let him down a bit by not shouting out loud/sending him to playgroup earlier to highlight possible areas of concern, etc.

smileANDwave2000 Thu 26-May-11 17:03:03

youve done nothing wrong he sounds lovely , some people ive heard say they wish their dc didnt have X but i dont feel that way if given a choice of course id like my DS to be NT and in MS not ASD& Dyspraxic at SS but hes who he is and i adore him as you will always love your beautiful DS no matter what if we changed them they wouldnt be who they are anymore actually my other two DCs are fantastic too but my eldest DS(15yo) doesnt and hasnt for years sat and cuddled me anymore normal teen basically, so i think were kinda lucky my DS(11yo, ASD) still wants a story and sits on my lap every evening and loves his cuddles all the time hes wonderful just the way he is the little tyke grin

graciousenid Thu 26-May-11 17:20:52

"if he is cuddly and smiley and not frustrated by stuff that all sounds good"

Where does this idea come from? Really? Where?

Being cuddly or happy or smiley or not tantrumming have nothing to do with an ASD diagnosis. Christ the number of times I have seen people say 'oh but he's so charming & happy & loving ... he can't be autistic' it's rubbish.

OP if I was in your position (& I was 2 years ago) I would be self referring to SALT for an assessment, getting an audiology referral & visiting GP asap to get referral to a developmental paediatrician. It's a shit process & no-one here can say whether or not there will be ongoing issues with your ds' development but the speech issue and nursery's comments would cause me concern.

beautifulgirls Thu 26-May-11 17:38:36

Hi HO - welcome to the SN boards. Not much to add really, the ladies here have said most of what I was thinking as I read your post. Just want to say he is still the same little boy you had before all this was mentioned to you and once you get over the initial shock of this you have come to the right place to be pointed in the right direction for lots more information and of course lots of moral support and advice here. DD#1 is 6yrs old and we still don't have a diagnosis yet and it wasn't until she started in school that people started to see all the other behaviours with her as her speech has been a clear and obvious problem since she was tiny and everyone focussed on that. I am grateful that at least the school have pointed so much out to me and been supportive. I think the nursery you have sound like they will be supportive in the case of your DS and hopefully enable you to get more information and support in place for him.

EllenJaneisnotmyname Thu 26-May-11 17:45:40

My DS has always been cuddly and very funny. He has a great sense of humour. But he had problems with delayed speech, echolalia, he was socially withdrawn, he had unusual responses to others pain or tears. He had a high pain threshold, was constantly on the go, he only really played with cause and effect toys, ie toys that did something, never played imaginatively etc. I worried about his speech, and by the time the SALT appt came along everything else was starting to concern me. The SALT advised me to go back to my HV and she referred me to a paed. He was DX with ASD at 3.7.

I can't say whether your DS has ASD, but there are obviously enough concerns to take to a developmental paed for assessment, IMO.

chocjunkie Thu 26-May-11 18:48:27

OP, has the HV referred you to the dev paed? in my area, HVs also do the developmental check up and if they have concerns, they will re-check 3 month later and decide then about a referral (they explained to me that they do it twice before referring as some children might just have a bad day during the first assessment hmm)

I knew that my DD wasn't just having a bad day but that she had issues which need to be address. as HV refused to refer without follow up check-up 3 month later, I went to my GP and put my foot down there to get DD referred.

if HV won't refer now, then it might be a good idea to talk to GP instead.

AttilaTheMeerkat Thu 26-May-11 18:59:21

I was also wondering the same questions as posed by choc.

I am no expert either but from what you have written ASD cannot as yet be ruled out entirely here. I would also now be looking at asking the GP to refer your son to a developmental paediatrician.

justaboutWILLfinishherthesis Thu 26-May-11 19:01:55

Message withdrawn at poster's request.

justaboutWILLfinishherthesis Thu 26-May-11 19:02:17

Message withdrawn at poster's request.

TotalChaos Thu 26-May-11 19:30:57

well I couldn't begin to speculate whether or not your ds might be on the autistic spectrum, but certainly it sounds as if his language/communication are delayed, which would be good reason to get a full developmental assessment, and as others have said, look for hearing check and SALT referral too, hearing test is a bogstandard precaution to rule out a physical cause for language delay. to be a grinch, I reckon if his playgroup were that wonderful then they would have mentioned their concerns to you before you asked....

re:referrals - please chase this up yourself. paperwork can get lost in someone's intray causing unnecessary delay. so if you hear nothing further in 2 weeks, start doing digging as to who he has been referred to and how long the waiting list is. it's perfectly acceptable to phone up paed's secretaries etc to politely ask this sort of thing. Having had a similar child (placid, language delayed, echolalia) one thing you should strongly consider is whether he might have delayed understanding of language too, as that may explain a lot re:difficulties at nursery etc.

you can get started now on working on his language. useful websites:- (lots of useful handout pages)

useful books
The Parent's Guide to Speech and Language Problems by Debbie Feit
Play, Laughing and Learning on the Autism Spectrum by Julia Moor (relevant to language delay, not just ASD)
It Takes Two To Talk or You Make the Difference by Ayola Manolson (hanen books, available from winslow publications)
Baby Talk by Sally Ward.

justaboutWILLfinishherthesis Thu 26-May-11 19:37:42

Message withdrawn at poster's request.

EllenJaneisnotmyname Thu 26-May-11 19:53:45

I had Baby Talk, but I didn't much like it as every developmental stage is so procsribed by age. None of my DS's met anything like the milestones, and DS1 is NT but had very delayed speech, DS2 has ASD and DS3 is a really bright but quirky spark.

I much preferred the Hanen books 'It Takes Two to Talk' or 'More than Words' from Winslow which allowed you to assess where you child actually was with their language development, rather than simply telling you how far behind they are. You know he's behind, knowing exactly how much can be depressing rather than motivating.

TotalChaos Thu 26-May-11 19:57:18

Ellen - (whispers) I didn't much like BabyTalk, as it seemed to feature really easily fixable problems, like the kid who was supposed lang delayed due to nutty mother not letting her do messy play hmm but loads of people on this board have thought it very good confused

Agnesdipesto Thu 26-May-11 19:57:52

If you concentrate on the delays and finding out what is needed to narrow the gap it really does not matter if its ASD, late speech, general developmental delay etc etc.
If he is on the spectrum then there are a lot of positive signs - fairly happy, has speech, no behaviour problems etc - all the more reason to get in early and work on the bits where he is behind before the gap gets wider - which if its ASD it will. You may well be able to close the gap before school.
Early intervention even if problems are mild can only help later on.
You can ask immediately for speech therapy referral, portage or early years specialist teacher to come into nursery, some 1:1 at nursery to work on areas where behind and self refer to an educational psychologist. All this can happen without a diagnosis. Nursery can contact an area senco and should be able to get extra funding
The only thing you cannot usually access (in most areas) without a diagnosis is the autism service - which is crazy as they should be (but often aren't) the ones best placed to give advice.
Going into nursery and watching a session to see how he compares to peers can be an eye opener. Often your child becomes your normal and you don't realise how different they are to what is considered typical
Totally understandable to feel down and unsure - many of us have done the is he isn't he thing. But don't let that stop you taking action and getting on the waiting list for everything. You can always come off the list if concerns resolve.

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