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ASD children are all different....so why can't they see what i see! (Sorry very longggg)

(34 Posts)
Having a bad time again.
I am convinced DS has asd, it took me a while to understand it and realising it since
Paed said DS ,4, is on the 'mild' end of spectrum.

DS has a speech delay (of around 15 months or so) both in expressive and receptive language, and can be very repetitive with questions and some echolalia.
He also has a very muffled, unclear speech, doesn't sound many consonants and mix them up.

DS has a few rituals (he has to open/close doors, turn lights on, press tv/dvd buttons, stacking up cushions, putting 2 spoons of choco powder in his bottle,...all of which MUST be done by him in a certain way or we have tears and tantrums), some stimming (mainly vocal), and a bit of hand /finger twirling when he is upset or too excited, and some sensory issues (noises, bright lights, tactile, food)

His play skills are not age appropiate (EP said they are imature), he has little imagination when playing, he doesn't do symbolic pretend play and is also repetitive in how he plays. He doesn't like to join in group table activities at nursery, and frequently 'stares off' into space.

His social skills are fairly limited with other children, he can do the chasing bit and laughting and running with them , but doesn't know how to approach them appropriately, or join in the play unless someone helps him to do it. DS cannot do sharing, is obsessive with toy cars and trains,... and simply scream to show distress when unhappy at nursery about something. DS is a fairly anxious child on the whole.

DS has quite limited empathy, he will not come and cuddle when someone cries , he will look , sometimes ignore or simply say" what's matter!". DS has never ever expressed emotions verbally, never said 'i love you or even i like you mummy' (he can say i like motorbike though!) or even 'i'm happy or sad'.

DS will observe the other kids, imitates them down to the last detail and do parralel play.
Ds does give good level of interaction with professionals on a 1:1, allow them into his play, and will show some flexibility (although that can be on his own terms)
So mainly because he imitates so perfectly (too well! in my books, because that's his own way of socialing) and because he allow adults into his space and gives joint attention and some eye contact, i'm told by salt and EP...."asd kids just simply don't do that!", they both say DS 's issues are down to his speech delay and he may just have a few asd traits but not enough for asd.

I totally disagree. Am i right?
EP only spent 30 mins with DS on one occasion, and salt sees him one in a blue moon in a structured setting during salt therapy.

I know EP and salt are not qualified to make asd dx, and therefore shouldn't be saying he hasn't got asd. But they are saying it!
I am convinced their opinions will have a big impact on consultant's paed decision concerning referal to CAMHS.
There is nothing i can do about it.

I feel like telling the paed quite bluntly that i (and DH) believe DS has some form of autism and that EP and salt have not spent enough time with DS to warrant their assumptions.
Would that be a foolish thing to do.....???

I want these people to listen and take us seriously.

Sorry , rant over. blush
Is he on early years action plus?
Add message | Report | Contact poster By Fri 06-Nov-09 20:43:28
Hi mysonben. yes, IMHO it does sound like you are being fobbed off from what you have said.

In our experience, it seems there a lot of woolliness and vagueness around ASD from professionals, and they don't want to commit to anything they can avoid, particularly as they are all under pressure to keep budgets under control.

When I said a 'snotty' letter, it was a poor turn of phrase (sorry - I do get on my high horse when I think people are being messed about!) I think a firm letter, stating all the facts as they stand, with copies of the BIBIC report etc may hold sway, and like Starlight says, if they won't do a formal dx at least push for a working one. FWIW, someone I know who is years down the line recommended putting everything in writing when you request help, as then you have a paper trail to fall back on. Also, make sure that you highlight the fact that early intervention is critical for a good outcome in adulthood...

HTH!
Add message | Report | Contact poster By Fri 06-Nov-09 18:49:00
4 in a few weeks
How old is your DS?
Add message | Report | Contact poster By Fri 06-Nov-09 17:40:51
hi,

have a meeting with the paed in two weeks time, and not feeling overly positive about it, as sure i will leave non the better for it.

my ds has lots of traits, but also can hide alot depending on mood etc. First time i meet paed he said it in 5 mins of meeting. next meeting i wrote a letter in advance, noting all the areas that ds meet the DSM-IV dx criteria in bullet point. he gave a verbal agreement, but asked why i wanted a dx when his needs were being meet at the present, hmm. says to me they know but avoid giving dx as long as possible.

now his improved alot again, with intervention, i know he will not dx. the thread about the first 2 years were all v. similar, that it really be that difficult for the professionals?

Regarding the IEP's when our portage worker joined in one meeting she said something that really changed them. previously they were sounding like your ds's - ' improving sharing, and participating in group activities'...and she commented 'how are you going to achieve this' and that stopped everyone. So now are IEP's are more detailed and all been achieved - working! they are - taking turns with one peer (the one that ds related to most) with adult intervention. next with less adult intervention, now he can take turns without an adult. so now advance to with two peers, v. different. also one was asking what, where, why questions? is he listening and responding correctly or just his stock answer?

his currently having 1:1 for 1h till jan, sure they will take it away, just because his doing well, but we will see.

I got the impression it was only the paed and this age. it's just so frustrating and angry when it is so obvious.

oh dinnertime...
It is a bit confusing all these titles and what exactly they do , can do,...

I've tried googling it, and seeing various things on there , haven't seen anything croncrete on whether EP do dx or not. So i still think they contribute in the way of asessments and identifying problems.
Oh I think our psychologist is both Educational and Clinical which is probably why she can give a diagnosis but EP alone can't.
Thanks Tclanger for your reply.
I have read your brilliant blog about M too smile
Yes, salt has tried to explain that some childen with language impairment can present with some autistic tendancies, and that she feels that is the case with DS.
But until they all agree on the same possible dx (even if we never get one), i want to have DS properly asessed for asd, if in the end we are told it isn't asd then i'll let it rest as long as ds gets sufficient support at school.

Nappy, i think the EP is mainly there to assess and report on 'concerning' behaviours and developemental 'profile' of the child within school, and also to do assessement re: statement of needs.
EP can sometimes give their opinion about 'possible' asd or not, but the final say isn't solely up to them, and it isn't the EP who gives a dx neither.

I think Clinical psychologist are the ones who can give dx.

Well that is what i think, however i could be wrong...hmm
Maybe someone else might answer and be certain.
By EP do you mean Education Psychologist? I thought they were qualified to make a diagnosis? Is that not the case? If they aren't who is?
Hi

I have an eight year old DS with severe langauge disorder and significant sensory modulation and integration probs, but no diagnosis of autism.

M presented very similarly to your DS at that age, but went on to develop highly imaginative play skills, is adept mimic and still copies the behaviour of other children.The echolalia was peaking at age 4-5 and he still has some fixations and relies on routine to make sense of his world.

He is however very flxible, has many varied interests, for instance he is a gifted athlete and now works very well within a basket ball team.

His ticks and stims seem to have increased over the last couple of years and I can identify many similarities and differences between him and his friends who have HFA.

His langauge disorder impacted every area of his development and his empathy is only just now developing. His social skills are behind and although he can identify most expressions I feel that he lacks a social imagination at this point.

We went through the SALT/Paed route and autism was ruled out. Since we were basically shown the door as far as help goes we eventually had an ICAN assessment where we finally got a joined up picture of what was going on for M. The team there were categoric that he did not fit the profiles for autism, he had various psychological tests there, to back this up.

We have had to provide the SALT intewrvention, because our Region would statement him and without one there is no access to a language unit. If your DS hasn't already seen an occupational therapist, I'd ask the team for a referral. I guess that the CAMHS referral will at least take place in his school setting. M showed very different behaviours in a clinic, to that in his classroom, where he struggled to cope.

I do feel that there is a subset of children who fall between SLI and autism and so I have refocused my energies on dealing with the various issues M has, I was driven quite bonkers trying to obtain a definitive diagnosis.
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