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DD non verbal but no ASD

(18 Posts)
chickensaresafehere Sun 11-Sep-11 17:34:07

Anyone on the SN board with dc's who are completely non verbal without ASD?
My dd2,4.6,does not speak at all,but uses makaton to communicate,she is also hypermobile.Had the usual tests Inc.MRI but as yet no dx.Paed neuro says she has isolated speech delay which is fairly rare?!?
Just interested in others who's dc's are similar??

lisad123 Sun 11-Sep-11 18:51:03

Sorry never heard this before but hopefully someone will be along soon.

lisad123 Sun 11-Sep-11 18:51:53

Have you seen a developmental pead? Not very pead is great at seeing signs of Asd.

2011RWC Sun 11-Sep-11 19:39:23

My DS 2.9 soon, has severe GDD again all the usual tests - he has features which lead the docs to think the cause is genetic. His Paed, Geneticist and Neurologist all said he didn't display any ASD traits but I wonder because his development is so delayed that they just aren't apparent yet and also how well they can tell based on the hour or so session they see him every 6 months! He is very sensory especially around his mouth and arms - this has only been acknowledged by the private OT!

2011RWC Sun 11-Sep-11 19:41:24

Sorry I never actually said and has no speech! Lots of babbling and noises to indicate pleasure/displeasure and we think one word fairly consistently.

Zakinthos Sun 11-Sep-11 19:58:17

I presume she has seen a speech & language therapist? If so, what did they say? If she hasn't , she needs to see one! It could be a number of things...

chickensaresafehere Mon 12-Sep-11 07:36:57

She has been seen by all services since she was approx 18mths.Many battles with SALT,as it is crap where we live sad,asked to be seen by Nuffield,but they will not see her as she has no speech!!She started MS school last week with a full statement.She was originally given a GDD dx, but the paed neuro said that her understanding was good.
We are currently only seeing the cons paed yearly,due to see him next month.Just feel very much alone regarding her condition sad&not sure what to do next.sadsadsad

saintlyjimjams Mon 12-Sep-11 08:35:12

Ds1 severely autistic and non verbal aged 12. However in some ways his language seems separate from his autism. By which I mean he's sociable, he teases, he pretty communicative (as much as he can be), shares things that interest him, very affectionate, but very held back by language /speech problems.

willowthecat Mon 12-Sep-11 10:39:33

Do you feel the lack of a dx is making it harder to access services ? How is the level of support in school ? Your situation does sound unusual at least by the standards of this board . Has the GDD dx been formally removed ? As far as I can make out GDD is a very wide term anyway and does not in itself tell you what the issue actually is. Hopefully you will get closer to an answer next month.

Mouseface Mon 12-Sep-11 10:52:30

Nemo is 2.5. He has GDD along with Pierre Robin (short jaw and narrow airway) along with a cleft palate. He's had SALT from around 6 months but as yet, says no words. Nothing to do with his cleft they say.

He has other little 'quirks' and we're due to see the Genetics team at the end of the month. Other than that, his Paed says it's too early to confirm if he has any LDs.

He makes noises but does not form words. I'm not sure when they will check for LDs.

Hope you get some answers soon. x

farming4 Mon 12-Sep-11 11:03:47

Hi ds2 is 4.6 and has just started speaking - up to 30 clear words and about another 30 approximations grin up until 3 mths ago he had no speech and used Makaton and a communication book for pre-school. Been seeing SALT for 2 yrs and provisional dx of Verbal Dyspraxia but not sure. MRI and all tests come back clear -no ASD, GDD etc and is reaching all his milestones when he should. Only other condition is epilepsy which is med controlled and no fits for a year.

your dd sounds like ds2 apart from the epilepsy - but his paed doesn't think the no speech is related to that anyway! confused

Zakinthos Mon 12-Sep-11 11:58:07

Chickens, I can't believe you are getting no help from the local SALT service (well, I can believe it actually). The Nuffield Centre deal with severe speech sound disorders and developmental verbal dyspraxia. Unfortunately, if the child has no speech, they cannot diagnose verbal dyspraxia as you have to actually look at the child's speech sound patterns etc. in words. Did she have any feeding difficulties when she was younger? Can she chew things ok? Has she been seen by an educational psychologist to establish her non-verbal skills level? If her non-verbal intelligence is within normal limits for her age, and there are no other problems, it could be a severe speech and language disorder/severe dyspraxia but this would be difficult to diagnose as she is completely non-verbal. She should definitely have school visits from a SALT now that she has a full statement. If the statement doesn't specify speech and language input, I would work towards getting that changed.
Good luck!

chickensaresafehere Mon 12-Sep-11 13:28:38

She has no feeding difficulties,the only problem she has had in that respect is she could not breast feed,but had no probs with a bottle!She eats very well.She has probs with dribbling which are improving as she gets older,but that was put down to her hypermobility.
I feel her non-verbal intelligence needs to be tested,as the cons paed was a bit vague,,saying she may/may not have learning difficulties.The paed neuro(Dr Curran-AlderHey)was great,said her MRI was essentially clear & he saw 1/2 cases of isolated speech delay without ASD a year & she may have some speech by 12 but he couldn't know for sure.Which left us abit in the dark.
We haven't seen the developmental paed since Oct last year,so that needs sorting!!
She will be seeing the SALT in school,but they have been terrible,at the beginning of this year they wanted to put her in a group session with 5 other children,all of whom could talk!!I made a formal complaint & she was seen weekly on a one to one basis.
willowthecat I don't know if a dx would help her,all the profs say is 'we cannot do a dx until she starts talikng' which to me seems a cop out,don't you think?!?But the GDD dx is still there,but as you put it,is a very wide term which looks good on reports!!
farming4 Wow,how did you feel when your lo started talking.I sometimes think that day will never come for me sad
Thanks for all your replies,it makes me feel less alone with all this & will seek more answers at the cons paed appt next month,as it is really wearing me down sad

farming4 Mon 12-Sep-11 15:08:29

If someone had told me 6 mths ago ds would be making attempts at words AND getting them approx right I would have said they had had too much wine! He basically went from talking phonetically ie c-ow to saying the words pretty much overnight. No idea what caused it, what had been done different or why he suddenly started "getting it". His IEP in pre-school had been set in June with the aim of it going up to "big school" with him for review end of Sept - had a leavers review done in July and he'd achieved everythingshock. His SALT has sent him away until Oct cos she says theres nothing she can do therapy wise cos she can't keep up with him! Hes now stringing 2 and 3 words together when prompted and is volunteering words instead of using the signs - I'm a very proud mummy grin

fwiw we were turned down for Nuffield for the same reason of not enough words! May have to re-visit the referral with the SALT when we see her next.

chickensaresafehere Mon 12-Sep-11 15:23:32

DD doesn't make any attempt at letters or words,she very occasionally will say 'dada',which is rather like baby babble,but only that nothing else.
Apart from that she is very vocal,which as she gets older attracts more sideways looks from people IYKWIM angry but getting used to it!!!

saintlyjimjams Mon 12-Sep-11 17:46:30

Do ask about a communication aid as well. We are trying to get funding for one for ds1. He had a three week trial and was coming out with all sorts. Very bossy directing me left and right in the car. He was very upset having to give it back.

Zakinthos Mon 12-Sep-11 22:22:13

Does she put makaton signs together yet to make simple sentences? Or is she just using single signs? Communication aid is a very good idea as not everyone will understand her signs and it will give her an additional means of communicating as she must get frustrated at times. Good luck with paed appt next mth. Let us know how you get on smile

chickensaresafehere Tue 13-Sep-11 09:59:30

Yes she puts makaton signs together.Will definitely ask about a communication aid smile.
Thanks Zakinthos,will keep you informed!!

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