Autism or not ?

[mymatemax]

Hope you don't mind me joining in?
But in the absence of any diagnosis there seems to be a reluctance from the professionals to offer any advice..
there seems to be alot of knowledge on here & I think I need your help please.
DS2 has been assessed by CDC Autism team but they said he doesn't "quite fit" He shows some Autistic behaviours & obsessions, has strong desires for routines & sameness, obvious anxieties & sensory sensativities, struggles in social situations etc etc but....
apparently is too calm, too well behaved & on a 1 to1 (when he is comfortable with the situation) has good interaction & his Griffiths test was too good & he does show imaginative play with encouragement.
So the physchologist is thinking more OCD or maybe anxiety disorder & discussed him with the CAMH team, they don't feel he quite fits their books either but he is on the list for assessment with them.
In the meantime I have a four year old who screams if I drive a different way to school or his coat is in the wash & has to wear a different one.
The physch wouldn't offer any advice (asked about potty training strategies) incase it was counter productive until they had decided quite which bag he fits in..
He also has mild CP & was dx with Global delay although his recent assessments have shown huge improvements & there doesn't seem to be such a gap.
I am concerned that while they argue amongst themselves we are waisting time.
Any advice would be very welcome... Thanks for listening!

Thanks Socci

He had a multi disciplinary assessment, 2 hrs a week for 4 weeks followed by a feedback session.
It is not really that I am desperate for a dx or that I strongly disagree that he does not have Autism (they said they did not feel it an appropriate dx at this time)more that we need to know that our reactions to his behaviours are not making his anxieties worse.
He starts school in September & I need the knowledge & confidence to ensure he is in the right environment to learn.
He is very settled at playgroup but it has taken 18mths for him to be settled enough to start to interact with the others (not that he initiates it) I don't want him to have to go through all that upset again.
I am sure there probabily isn't an easy answer
I think I am just getting frustrated by the lack of advice by the experts & I am not sure if they are hidiung behind the lack of dx as an excuse as you say it is all about money!!!!

Thanks again Socci

Hadn't thought about EP, he saw a clinical psychologist & I didn't think about there being a big difference.

Any ideas on how to find a good independant one
in our area (East Anglia) ???

Guess I am used to dealing with physios, OT's etc but this is a bit new to me.
Think maybe I need to start swatting!!

I'm not an expert but those seem like strange reasons to rule out autism IMHO. I have 2 boys with autism. Ds1 has always been passive, which makes him seem calm and well-behaved. With 1:1 encouragement both boys could/can manage some imaginative play.

Welcome to the SN board.

Thanks Coppertop

I am trying to keep an open mind but it is getting more difficult the longer thing go on,
the development paed said in her report
"xxx is presenting as a complex little boy where the clinical picture is not indicative of ASD although his history is suggestive"
His anxieties & obsessional behaviours need to be explored further......

The psychologist also said he had no fight or flight reaction to his anxieties, just distress & again this was unuaual.. apparently!
He also showd a very developed sense of humour, laughing with the playworker which again was they said not typical autistic behaviour!

although could not sit with the small group of children to share an activity or snack, his response is to drop to the floor & cover his head. This is normal if he doesn't like a noise or if I use the wrong cup for his drink etc.

He is very passive & I'm sure at school the teacher won't even know he is there, but that is my fear.. although he is sitting in silence with his head down it is purely because he can't cope with the group around him.

He also shows no familiarity to people if he sees them out of context, so for example when he sees his grandad at the shop he shows no more familiarity with him than he does with the lady stacking the shelves.

How this will all transfer to a school setting I just don't know.

Again, ds2 has a very cheeky sense of humour. Ds1 is a little older now (6) but when thigs go wrong he tends to just stand there and burst into tears. No real 'fight or flight' there at all.

Have you had any help from the SENCO/Early Years team about the transition to school? Ds2 is starting school in September so we're just beginning this process.

Coppertop,
I think thats why i feel frustrated, it is as if they have a little tick sheet & if not enough boxes get ticked you get passed to the next dept. It is practical advise we need from them not just a dx!

The CDC has refered to pre school advisory SENCO but we havn't heard anything yet, partly this has been done as a formality because of his CP.
The good thing is I do have confidence that the school will try to do whatever it can, DS1 is already there it is a small country school but has a very good reputation especially with SN.
They already have several children at the school with Autism & downs syndrome.

Maybe I need to push to get things started!

He has had a language delay, he was a completely silent baby & toddler, but this is improving, he has made huge strides over the last 6 months.
His understanding has always been good, although sometimes I have to re-phrase things. His expressive language is still slightly delayed & he is not always easily understood. As he hates to be the focus of attention if someone doesn't understand him first or second time he gives up.
Also if he has been upset by something..like this morning his car seat not being in its usual place.... he can go the rest of the day without speaking, so I am having a quiet day!

I had a call from the regional pre school SENCO, she is going into ds nursery next week & will discuss with me afterwards.
I had the chance to briefly explain my concerns & at least I feel now that something is happening while we wait for further assessments. Hopefully I'm not being naive & he will get any help he may need without too much of a battle??

Thanks again for all your advice
mmmax

Mymatemax

Whereabouts in East Anglia are you? I am in Cambridgeshire (though close to Suffolk border). Just wondered if you would be going through the same systems as I went through with my Ds2 who is now at a special needs unit attached to a mainstream school. If so if I can offer any help I will do gladly.

Hi Saker
We are in Suffolk Coastal area, so I may well take up your kind offer & pick your brains if I need to. How old is your ds
Thanks for your support.

Hi

He's 5. He has no diagnosis but is a mixture of asd, dyspraxia, sensory integration disorder with little bits of them all but not enough for a full diagnosis. Loads of problems with motor skills and speech and language.

We actually fall under Cambridgeshire not Suffolk so I may not be much use in terms of how the system works but happy to chat anyway. What CDC are you with?

Hi Saker
He is with Ipswich Hospital CDC, dispite my ranting in original post normally I can't fault the hospital, his care has been fantastic since birth.
I think it is the system rather than the individuals I am so frustrated with.
Do you come under Adenbrooks(sp)?

Hi - really sorry I missed your reply the other day.

Yes we are under Addenbrookes. In general the wait to see someone has been short compared to other places, but we had to wait a long time to get SALT and the OT provision has been very shaky. Also the professionals are not great at talking to one another so although Ds2 has been seen by everyone under the sun they don't really communicate with one another. It's a bit better now that he's at school and the school sort of anchor things a bit. His SALT at school is great too, loads better than the other one we had.

Just bumping this so you don't think I was ignoring you .

Thanks Saker

I didn't think you were ignoring me at all, just guessed you were busy!
Our SALT provision has been poor just assessments every few months & some advise for us at home. Having said that his speech is the area that has improved the most so we haven't pushed for more.
His OT is lovely though, he is having weekly sessions at the moment & really enjoys going.

Thanks again for your support
MMMAX

let us know how things go. You probably will need to be quite pushy especially with regards education. It would be worth starting to talk to his future school about what provision they can offer. Tell them your concerns and get them to tell you how they will deal with them. It might even ve worth considering whether you should apply for a statement.

I'll keep you posted,
I have spoken to the head at the school & have given copies of ds reports mainly physio etc for his CP & also assessment from CDC he was lovely & reassuring & said he would love to have ds at the school.
It isn't our local school, it's in a village a couple of miles away but he's said ds has a place...
I think I am avoiding applying for a statement, I'll discuss it with the pre-school advisory SENCO after she has visited him at nursery & then get the ball rolling... maybe!

There is another discussion about whether or not to go through the statementing process going on here.

It might be useful for you to read this too.

Your son sounds lovely - I am sure you are doing the right thing talking to the SENCO and school about him.

Thanks for that I'll have a read through the other thread!