Receptive language assessment-need help please!

[mishymashy]

Hi, Ds aged 3.3 has just had his formal assessment for his receptive language as we have huge problems at home with his understanding, his results came in at 11th percentile. S&LT has said that these were very good results and if we can get him to the 16th she will be able to sign him off as within normal range. I'm very confused as i have a ds who cant answer questions like 'whats your name', 'how old are you' which she has said she wouldnt expect from a child Ds's age. I am surrounded by children younger who can chat, express themselves in simple terms, have opinions and definately follow instructions like put something on,under,next to or in, none of which Ds can do. I think S&LT was annoyed at me because i wasnt jumping for joy, if anything i'm more worried now because the sole aim seems to be to sign him off asap. Am i expecting too much from Ds and are expectations so very low now. DDs are much older so expectations for them appeared to be much higher at this stage. I'm thinking of getting private assessments done for my own sanity as i'm sure the S&lt thinks i'm a pushy overbearing mum who isnt satisfied with her own child which couldnt be further from the truth. He starts school in Sept 2012 and time is flying. It took her 20 mins to get him to comply with the test, i cant see a teacher with 30 other children in her class being able to allow him this time to settle for every activity. The specialists dealing with Ds were all interested when it looked like he had ASD but now he is sociable its as though they are bored with him!! I should add, me and family never thought he had ASD. Is the 11th percentile good and am i neurotic. Can you get private assessments, because she didnt bother doing anything for his expressive language. Should i be happy with these results?
Thanks

[TotalChaos]

It's true that the 17th centile is the bottom end of normal, but I wouldn't be particularly pleased at 11th centile, if I felt that my DS was very noticeably behind his peers. (DS receptive language at 3.0 was in the 18 to 24th month range on formal testing, we weren't given a centile). Unfortunately a mother's "fimbling feeling" from being around lots of kids the same age and younger tends to be a bit disregarded at times.

Yes, you can get private SALT (we did that due to lengthy waiting list), and was v impressed with her, I think the website I found her on was www.helpwithtalking.com.

Has he had a hearing test, to rule that out as an issue?

There's plenty of work you can do with him at home to work on language/communication:-

useful websites
www.hanen.org
www.teachmetotalk.com
www.ican.org

useful books
Hanen - It Takes Two To Talk/You Make the Differece
The Parent's Guide to Speech and Language Problems by Debbie Feit
Baby Talk by Sally Ward.

[EllenJaneisnotmyname]

Ooh, yes, second the Hanen recommendation. Cheapest source I can find link here.

I had Baby Talk, but didn't like it as much as the Hanen book.

[mishymashy]

Thankyou for the links, i will have a good look through later. I have had a google and found a private speech therapist that works with an e.p, but i would need to ask for specific tests rather than have an open ended budget. Does anyone know which assessments are the most informative for a 3.3 year old. There are so many different ones that each area use unfortunately, nothing seems standard! I'd like a cognitive assessment aswell which i think the E.P could do. Any ideas which are the best??
I'm finding it very hard to trust the judgement of hps that seem desperate to sign everyone locally off asap. Ds got signed off from physio as soon as they got him standing without a long term care programme and as a result he is now being assessed for splints due to damage to his muscles shortening because no one was assessing him. He has mild C.P. Now the damage is done we are back on the books again to try and put it right. Its all very messy in our area at the moment and getting worse.
Thanks again

[EllenJaneisnotmyname]

Have you applied for Statutory Assessment (SA) for a Statement yet? It takes a minimum of 6 months and may be the way to go. If they agreed to assess the LA would then assess your DS using their EP, and SALT reports would be included. The only EP assessment my DS had was during SA, they used a WISC assessment for cognitive ability. Maybe google?

You should look at the SEN Code of Practice which sets out the current law. //www.education.gov.uk/publications/eOrderingDownload/DfES%200581%20200MIG2228.pdf You can ask for a hard copy and the SEN toolkit.

Hopefully others will have some good advice for you. If you don't get answers on this thread, start a new one with your new questions in the title.

[TotalChaos]

IME if you are self-funding then private SALT will be sensitive to that, I know my private SALT did initial assessment, report and programme for a fixed fee, with any reviews to be arranged as and when for an hourly rate.

also IME - the type of assessment isn't that important - it's how good a SALT is at individualising appropriate next steps for you to take with your DS - i.e. to get beyond the generic read and talk to them type advice!

in terms of cognitive assessment - HV or paed can do a basic cognitive assessment called a Griffiths questionnaire, it's v broad brush though but does look at all areas of development.

sorry you had such a bad experience with physio.

[mishymashy]

Thankyou again! The silly thing is that we have our own EP (NHS) but she did an assessment a year ago and he was 10/12 months delayed and havent seen her since, same with the S&lt, we see them so infrequently that we never have a full picture of where Ds is at in all areas at the same time. I really want a black and white picture of all his areas of development in one go and i cant see that happening within our NHS service locally. I dont feel that 45 minutes every 6 months is moving us forward, its just waiting for him to catch up naturally which isnt happening and school is fast approaching. We had a huge battle with his nursery as they were awarded extra money for him (1:1) but they put it in the school pot and was told to get it out again, so that relationship went out of the window! DS starts new nursery in Sept. I think what i am looking for if i am honest is an independant specialist to tell me i have every right to be disappointed with the shoddy services DS gets and give me the confidence to keep battling on, on his behalf. I sometimes feel as though we are meant to be grateful for the scraps we are thrown and I am being seen as an ungrateful moaning parent. The last thing i want to do is alienate the HPs dealing with him but believe me some of them are shockingly bad!
I'm going to discuss private assessment with Husband later as i think its our only option.
I'm wary of SA as it would be the same half arsed team doing the assessments and our LA is notouriously bad for statementing and SA. It would be a last resort depending on his acedemic progress or lack of in the future. I feel as though he has to fail before we can justify additional help.
Thanks again

[StarlightMcKenzie]

mishymashy, predictably I'd tell you to research ABA asap.

Your picture of your child through that intervention is very comprehensive as is the detailed outcome-based curriculum.

[StarlightMcKenzie]

And no, I wouldn't be happy with being signed off.

How your child performs in test conditions is a far cry from how he 'functions' socially.

[mishymashy]

Star- i've just had a look at ABA. Ds doesnt have ASD even though he has displayed traits during obs, ie sitting facing a wall for over an hour stacking the same 12 bricks with no communication! He has never done that at home! We have been told he is too sociable so doesnt tick all of the boxes. Would ABA be appropriate for a delayed child?
My main concern is that DS is not a people pleaser, he behaves the same for others as he does for us basically. If he wants to roll around the floor instead of sitting at the table for the S&lt then thats what he does. We have had 2 failed assessments due to his non compliance but we have been told that all 3 year olds are like that. My other children were the same for me at that age but knew how to turn on the charm for others and behaved impeccably when needed. Our biggest fear is him being labelled naughty when he is most definately not, its because he doesnt understand whats expected from him. Our biggest problem is he can talk. Its always the same phrases in each different situation because we have taught him them but when S&lt see him they says its appropriate even though i know exactly whats going to come out of his mouth with each task. He doesnt ask questions ever and never asks why and i cant ask him anything thats not in front of him but apparently thats normal. He hasnt been formally assessed for any of this. Its very frustrating. I'm not sure if its behaviour problems or his lack of receptive language skills.
Do they do an initial assessment for the ABA programme to see if each child is suitable?? Believe it or not, but we have been in the early intervention programme since he was 17 months old. I'm beginning to wonder what on earth the point of it is. Our only positive is that we have a fantastic portage lady who visits weekly. Sorry to ask so many questions.
Thanks again

[dolfrog]

mishymashy

The issues could be part of natural development, and at aged 3.3 your DS is only half way to the age of maturation, when children stop growing out of developmental issues.
All children develop different cognitive skills and abilities at different ages and at different rates until the age of maturation. After that age and remaining issues can begin to be assessed as a disability of some kind.
So at aged 3.3 the only issue which can be determine as whether ASD is an issue or not. All other issue are developmental. if there is a family history, the genetic link, of a specif information processing disability then an assessment may be made pre the age of maturation. Children are not machines that meet performance markers automatically as each has their own genetic blue print, and development plan. So program such as ABA should not be considered until after the age of maturation as it could interfere with you DS's natural development schedule. Sometimes there can be retained reflexes, but you would need to consult pead etc regarding these issues.
It could be he may have an auditory processing disorder, not being able to process all the sound based information that he hears, all of our children have that, which makes following conversations and verbal instruction difficult or for the very young impossible. So coping is about find alternative forms of communication pictures, diagrams, charts, and when older mind maps.

These are all very complex issues which can not be clinically identified until the age of maturation and only being aged 3.3 that is some time away.

Some on this forum expect the professionals to perform diagnostic impossibilities at an early age. They can see a potential problem, and expect and instant professional diagnosis, when in reality this is not possible. As has been said before being a parent is a marathon, and there are many twist and turns along the way. But we should not expect miracles from either our children or those trying to help along the way.
Research into these issues is still at the very early stages, and much remains unknown, and in many situations both children, parents, and professionals are pioneering a new understanding of many of these issues.

[StarlightMcKenzie]

mishymashy, I can't say whether your child has ASD or not, but I can tell you that being sociable does not rule it out. Lots of children with ASD, particularly those with HF, are VERY sociable, they just don't know how to do it appropriately and seemlessly iyswim.

It also sounds like your child has a lot of context appropriate echolalia, which is also a)very positive and b)deceptive. It means he is perceptive enough to learn stock phrases that keep the people in his world satisfied and stops them making additional demands. You might find he 'scrolls' through his stock answers when he isn't so sure of if his usual one doesn't get you off his back. This is also a symptom of ASD, usually on the clever end.

His inability to read the social situation and behave better (or know that he is supposed to and ask for sweets on purpose knowing that you might give in to avoid an embarassing meltdown etc.) or know what is expected of him in social situations are all ASD behaviours.

I think you might be better getting a private assessment from a private paediatrician with a specialism in ASD.

In terms of ABA. You would need to interview a few consultants/experts in order to set up something appropriate that meets your and your child's needs. Don't listen to anyone that says it HAS to be anything i.e. 40 hours a week, an expensive consultant, only tutors with degress etc etc. It doesn't. The best programmes have a huge amount of parent involvement, if not are exclusively run by parents who have had training.

Where abouts in the country are you?

[StarlightMcKenzie]

Oh fgs dolfrog, what you say doesn't make any sense at all and you still don't have any idea what ABA is.

It is well recognised by just about EVERYONE that early intervention is key when a child has developmental issues as the brain is still soft enough to change and speed up in terms of development.

[dolfrog]

StarlightMcKenzie

I have read about ABA whichwas developed by bheaviorists prior to the development of neuroimiaging which explains the cognitive workings of the brain.
ABA works in the areas researchers for which research has not yet developed a full understanding, like training animals in the zoo for rewards rather then have children and adults understand the issues and explain how things should be done.
So I think you are stuck back in the 1980s wit understanding how the brain works and need to do the required research and learning to have a full appreciation of these issues.
You seem to have a very black and white view of the world and seem to miss the vary large areas of grey.

[dolfrog]

StarlightMcKenzie

"It is well recognised by just about EVERYONE that early intervention is key when a child has developmental issues as the brain is still soft enough to change and speed up in terms of development."

Complete rubbish, no scientific support, only marketing hype from program providers.

[mishymashy]

Dolfrog-thankyou for the response, its always good to get another perspective, it keeps me grounded!

Star-I have tried on so many occasions to say exactly what you have written, to the HPs but never found the right way. You couldnt be more right, he has stock phrases for all the everyday basics, but when he cant think of his own phrase he rolls his tongue into garbled language or sound and walks away from us or plays deaf. In an assessment situation, he sticks to the bog standard phrases that we hear a thousand times ie doing a puzzle he says 'turn it round', 'done it', he wouldnt say 'it doesnt fit' because i havent taught him it yet!! The same with cars, he always says 'more cars', 'line them up'. Its totally appropriate language but the S&lt never digs deeper and just says 'wonderful, clear speech'!! I know straight away when he has something unfamiliar as he will walk away or wont speak. This is then interpreted as uninterested and rather than them pushing forward on unfamiliar ground they back off and find something familiar and so the circle goes on.
I will be phoning around tomorrow to get some info and more importantly costs as i'm guessing this will be pricey.
Ds's paed is an ASD specialist, she has done the obs which indicated traits, its the speech/language and sociability bit that the S&lt have completed that dismissed ASD.
Thankyou so much

[StarlightMcKenzie]

Neuroimaging has got nothing to do with the effectiveness or not of ABA.

Your argument doesn't make any sense at all, and you truly know nothing about ABA to make the claims you do.

ABA, like all good science is continually updated and adapted in light of research and evidence.

[silverfrog]

blimey, dolfrog - are you seriously recommending that ABa should not be undertaken before the age of 6/7?@! what utter rot.

what are you basing this on? as it goes against just about every study into ABA and EIBI/VB/whatever you want to call it. why ignore this research? advice like that is potentially very dmaging - you clearly have absolutely no idea what you are talking about.

[sickofsocalledexperts]

I am fairly sickened by this SALT's low expectations of your child! Certainly not knowing the answer to questions like "what is your name ?" is a worry at age 3. For her to say otherwise is simply buck-passing. I have several pals whose kids with speech delay and / or learning diffs (but not autism) who have seen great benefits from the teaching technique (not a marketing system, Dolfrog) called ABA. It might be worth trying out a session or two.

Certainly, waiting is not a good idea. My son was assessed by one of the country's leading professors in children with developmental delay and/or autism. He said that the absolute crucial years for speech development for children are pre-5. And I think I can see that too with my nf child's speech development.

If you look on impartial, independent websites, you will find good robust evidence for early ABA interventions in terms of speech development (and also in terms of behaviours, if they are also problematic). They are often listed under EIBI.

I found traditional SALT absolutely useless for my son's speech problems. The thing that many such systems of speech development miss with autistic and speech delayed children is that it can often be the desire to speak, not the ability, which is the most impaired. ABA works on motivation as much as articulation.

PM me if you want any info, are you in London?

[silverfrog]

dolfrog, if you think that using a behavioural approach is outdated then I am not sure you are living in the same world as the rest of us. the world where just about everyone responds in some way to an incentive and positive reinforcement. it is the way the world works, I'm afraid. it is human nature.

ABA has doen much, much more than just teach my dd tricks like a trained monkey (although the monkey part is quite accurate ) - through learning how to do things like ask me for things, or start a conversation, she has also learned the sheer joy of conversation - talking so that someone will listen; providing a response so that the conversation can carry on - the things we all do everyday and take for granted.

it has taught her to enjoy being with people, and it has given her the tools that came so naturally to dd2 - how to get on and help herself. she is, of course, still delayed, and may well always be (although I woudl like to point out she is at oyur supposed age of maturation where apparentyl she will stop growing out of developmental issues - no sign of that just yet, I am glad to say) - tbh this view is hopelessly outdated and was when I was studying neurolinguistics and neuropsychology back in the 90s.

[dolfrog]

StarlightMcKenzie

I would suggest you go away and learn about human communication, and neurology, which fail to want to understand.
I have researched ABA extensively over the lat few months, there is no methodology, and anything goes as long as it is ethical and gets results. So very hit and miss and very basic. have a look at
Applied Behaviour Analysis (ABA)
Autism
Autism and Regression
as you say it has very little connection with neurology, as this is nthe science which moved on from the behaviorist concepts as the neuroimnaging technology be came available, and neuroimaging is beginning to uncover the underlying cognitive issues which can cause autism, explain the cognitive issues involved and lead us away from the need for ABA.
you might like have a look at some of my "Communication and Neurology" research paper collections as well

Or join the CiteULike research paper sharing site, start your own online research paper collection and sahre your papers with the CiteULike Group: Autism - library 140 articles
and you might also like to have a look at Research Autism

[sickofsocalledexperts]

ABA is about as far now from the dog-training stuff of the 1950s as our mainstream education system is from the bad old days of 50s corporal punishment. It is outdated prejudice. ABA is now very different, as is education overall.

And yes, Dolfrog, I would love to reach a stage where they can neuroimage my boy's brain and pinpoint the exact deficits (at a guess, his speech centres and particularly his grammar centres are defective) - even better would be a day when they can also pinpoint exactly what will help my son with those deficits.

But we are not there yet, and I can't wait around for that bus to arrive. Till then, we are offered SALT (useless, imho) or we can branch off and try something like ABA - which has been proven to get better results than the traditional eclectic approach.

Why would you, whose children are not after all autistic or speech-delayed, but who have a quite separate condition (APD) want to put mums off from investigating what might be the best - or even just the least-worst - option available for chilidren today, in 2011? Why so anti ABA?

I think it is actually quite damaging for you to suggest anyone waits till 6 or 7: I think that is exceptionally poor advice and must not go unchallenged on this board as it's just plain wrong.

[sickofsocalledexperts]

And there might be hundreds of papers on neuroimaging, but it's simply not available yet to the average mum. Far from being offered neuroimaging, I've been offered bubbles and toys that go "beep" as the only state interventions for my boy. That's why I looked for something more effective and found ABA. The real world out here is lagging very much behind the learned research papers.

[mishymashy]

Thankyou all so much. Ds has never asked me a question but i was told thats probably because he isnt interested in the answer so that shot me down a bit and i feel that by pushing ahead i am seen as a parent thats looking for a label when in fact all i want is an answer so that i can then find the best way of helping him. Its a hard balance to get right. I dream of having a mini conversation with him instead of one word answers if any.
Sick- I am stuck in the South West so we are very limited in options with NHS services and private so we might have to look further away but i'm not feeling quite as wobbly as i was earlier. Its such a worry when i really do think that the first 5 years will set the foundation for the rest of his learning and if i dont get it right now then it could have a knock on effect for his entire future. Ds is a very visual learner and was assessed by paed as being 2 years ahead of his peers so portage have set us up with timelines and pecs but its hard work trying to get him to understand the concept. Makaton is a bit of a pain as he makes his own signs up, the same as he does with language! Its all very complicated. It would be far easier if he fitted somewhere nice and neat but he doesnt which is what seems to have switched off his team unfortunately.
Thankyou

[sickofsocalledexperts]

Mishy - in case it helps, I wrote a couple of articles about how ABA helped MOTIVATE my son to talk. There are things you could try yourself in there?

autismandabamum.wordpress.com/2011/06/29/how-my-autistic-boy-learned-to-talk-via-aba/

[StarlightMcKenzie]

If you can manage it, get yourself asap on a PECS workshop run by pyramid. It gave me so many skills to use with my ds.

PECS is notoriously badly used by SALTs and agencies because they just do not have the time to do it or teach it properly, but it isn't about being visual, it is about getting your child to share, and understand the reasons for communicating. It's incredibly effective and you'll probably find that you only have to do it for a couple of weeks with a very capable child.

The excitement I saw in my ds when he realised for the first time that he could ask ME for things and get them is something I'll never ever forget, and that his favourite things in the world he could not only label but share/point out to me makes me cry just remembering.