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Autistic spectrum please help?

76 replies

KangaMummy · 28/11/2004 23:32

Please could somebody explain what the symtoms might be to be on the spectrum{hope that is correct phrase}

DS is 9 he has dyspraxia and several other things.

When he had his OT appointment last Friday, he was being very very particular in how he was going to throw the beanbag into the box, how it should be held etc.

I mentioned to OT about autism and she said he is quite pendandic isn't he, but that she didn't have any experience of it. I said that I had wondered because what friends had said and at that point DS said "yes she spends all her time on Mumsnet"

We feel that he also behaves in a very babyish way with friends. Yesterday at the club he was roaring at the other children and they said "DS you are weird".

He used to Roar at everyone years ago but now has started doing it again.

He seems much much more immature than the others in his class.

It is very hard to describe but he just seems different.

He doesn't seem to know how to greet them or behave with them.

Who do we ask the GP to refer him to?

Is it a Psychologist?

We are thinking of going on Friday without DS so we can talk it over because he gets very angry when we mention anything which he sees as personal to anybody else. He gets angry at the first sign of embarresment.

I know nothing about Austism so please could someone give me some tips.

Thanks for getting down this far on my garbelled message

OP posts:
JaysMum · 02/12/2004 23:43

Am sure that J has absences - he will ask us if he is really here because he is dizzy and spinny and feels fuzzy. This normally happens after he has been really quiet and distant in his gaze.

J hates it if we talk about him when we see the Pead. I know ask to go in first whilst hubby sits outside with J. He would call us really horrid names if we told anyone our family secrets!!

J has DX of wait for it its a long list....Dyspraxia, Dyslexia, Learning difficulties - low conceptual ability(not worked out what that means yet - must check it out!!), delayed speech, Semantic-Pragmatic Disorder, ADD and ? Aspergers.
The Aspergers we are 100% about and have seen a private EP who said J should be seen as a child who has Aspergers BUT our local authority will not accept the DX because it was done out of county!!!!Have a three year wait on local NHS waiting list for assessment!!! Going private after Xmas!!!!

Tess04 · 02/12/2004 23:54

hi very interesting thread, i work with children (all day 5 days a week)on the ASD and nearly all the conditions mentioned here are on it, aspegers is very like high functioning autism, and it can be difficult to tell them apart. Currently there has been no know definate cause of any ASD determined, although some conditions very similar, particularly to the social aspects i.e. klienfelters, fragile X and nerofibromatosis, can be diagnosed through chromosomal tests.

Roaring can be a way of blocking out sensory stimuli alternatively it could be away of getting rid of people they don't want to interact with or of coping with a situation they don't understand, among many others, it may take a lot of working out to figure out what's causing it. One way that you may be able to stop it happening it to give him an alternative, many ASD children stick therir fingers in their ears while still not brilliant it may be considered more acceptable. I agree if you stop one thing another one will take over, it may be better to guide this to something more acceptable just incase the next is much worse.

Tess04 · 03/12/2004 00:04

jaymums

wow, what a mixture, that must be difficult,

low conceptual ability, is difficulty grasping concepts, not only interpreting them but applying them too, it means if you try and teach him something new it could take a long time until he 'gets it properly'and once he does you only have to take him away someplace different (i.e. Grans) and he may well not be able to do it there and have to learn the same thing all over again. A classic feature of ASD look up 'the central coherence theory' (sorry i don't have any specific links) and see if this applies to your situation.

hope this helps

JaysMumWantsaSilentNight · 03/12/2004 00:09

Thanks Tess - so what about perseveration!!!! Think it must be something to do with his repetative behaviour....just wish the Pead would give us a medical dictionary when he writes to us!!!!

KangaSantaMummy · 03/12/2004 00:13

That is alot.

We didn't know about anything until his physio/OT that he was having for a problem with his leg

started doing all these tests and assesments and I just found out like that

We knew he was different but had always put it down to being so premature and everything that happened after birth.

Feel very silly now as everyone else seems to started the process much earlier

Hope we havent left it too late

Tess04 · 03/12/2004 00:16

Jaysmum

yes - this either takes the form of repetitive questioning or behaviour,

Tess04 · 03/12/2004 00:22

just a note to those who may have notice me complaining on other threads about my ADHD son who i can't handle

it's one thing understanding a condition and working with it day in day out, but boy, when it's your own.................wish there was an emoticon for frustration,

KangaSantaMummy · 03/12/2004 00:23

DH has just said that he thinks the roaring

Maybe is a form of communication but according to DH thinks it is not to block stuff out

I don't know what to think now as I am very confused

JaysMumWantsaSilentNight · 03/12/2004 00:25

Thanks Tess.Might pick your brains over a few other things if you dont mind???

We are having a real problem getting anyone to confirm Aspergers. Our local authority does not have a multi-agency team here - only had a new SALT here for the last 3 months after 27 months without one!!!We have had private assessments done and they all indicaye that J is highly likely have Aspergers - yet none of the local docs will accept these reports because they ahve not been done in the area!!! Also we really pi**ed of a clinical psychologist because she DX J as having ADHD when he was 5 and we disputed this with her. Then a private EP said absolutely not ADHD - so she really does not like us because we have challenged her DX!!! Do you think that by going to get a private DISCO assessment that would or would not give us a DX of ASD would be beneficial - we dont care about the local NHS professionals reaction to this - we just feel we need to know for sure whether J is or is not ASD.

Also is it possible for a child with all the classic traits of Aspergers to have any form of a developed theory of mind? And what is a developed theory of mind anyway??????

JaysMumWantsaSilentNight · 03/12/2004 00:28

Kanga,
How old is your DS? - J is 9 in March but he is functioning about 3 - 4 years below his chronological age.

KangaSantaMummy · 03/12/2004 00:38

DS is 9½

but in schoolwork in the higher end of the class

Physically {riding bike, catching/throwing ball, and stuff like that} alot younger

Socially alot younger too

So I don't really know what that all means.

JaysMumWantsaSilentNight · 03/12/2004 00:48

J was riding at bike with no stabilisers at 3!!! What ever we told him to do he did it. He was walking at 9 months - never crawled though!!
He cant catch a ball to save his life - we are working on that at the moment. He hates any team sports - football is a real no no!!
Socially he prefers isolated play - doesn't have any friends just kids he knows. Has never been to a birthday party - no invitations for the kid who screams when anyone gets to close!!!
If we go anywhere he's the big lad playing with the babies - not so challenging for him.
He is totally adorable though and is so funny with the things he says.....today he asked his Dad if he was busy...hubby was reading the paper...hubby replied no...J said "well make yourself useful and make Mum a cuppa"...Bless I was on the floor crying with laughter!!!!

KangaSantaMummy · 03/12/2004 00:56

lol at cuppa story

DS cannot balance at all.

One thing we didn't realise was that he couldn't climb a 5 bar gate and never realised that it was part of dyspraxia. He just could not figure out what to do.

So each week 2 boys we know showed him and now he can do it

He still looks very awkward climbing anything even stepping over a little fence at school the others just jump it takes him ages.

KangaSantaMummy · 03/12/2004 00:57

It has taken him about 3 months every week trying so we are soo proud of him

Tess04 · 03/12/2004 01:06

kangasantamummy

roaring could well be a form of communication, how well does he speak? if it is only basic you could look into PECS or other visual communication strategies

jaysmumwantsasilentnight

Doctors don't seem to like it if you challenge them or tell them what you think before they reach a conclusion, i had this with my own who has a diagnosis of ADHD, but i know full well it is Aspergers, after 10 years of fighting to get this, i don't think i have the energy to challenge it and in the meantime of course he has had very little help. But if you want the confirmation for your piece of mind you should do what is important to you

if you want a private assessment go for it, i know at present you should establish diagnosis in your area for it to mean anything but (and i didn't tell you this) this is being looked into, and is a topic of discussion for some of the powers that be, don't know whether it will come to anything though

re: theory of mind,
understanding the feelings of others etc - the type of mental thought reading we do everyday, i.e. how do you know someone is upset even without seeing them actually crying
seeing things from others perspective - classic example from my son, he stole something from me and put it in his pocket, i saw him do it but he didn't know i had, i asked him if he had taken it, he said no, it was an obvious buldge - shaped giveaway, but he didn't comprehend that i could know what he had done, when i according to him didn't see him take it

classic example from ASD literature
sally has a smartie tube
katie sees the smartie tube sally has, it is filled with smarties
katie goes into another room and can no longer see Sally
while katie is in the other room Sally takes the smarties out and hides them and fills the tube with stones
katie comes back in the room

question to child - what will katie say if you ask her what is in the smartie tube - most children will answer Katie will think there are smarties in the tube (she didn't see Sally replace them with stones) the ASD child may reply that Katie will say stones - that is what they saw

children (intelligent children and yes they can be intelligent and still have ASD's)with ASD including aspergers don't necessarily develop theory of mind but rather they learn it, they pick up on what is required and act accordingly

hope this helps

Tess04 · 03/12/2004 01:14

Some great books on ASD

Donna willaims - Nobody Nowhere (this book is fantastic - Donna has Autism and explains the world as she see's it, how she felt, why she did the things she did, what people meant to her etc)

Uta Frith - Autism explaining the Enigma

Lorna Wing - The Autistic Spectrum

Tess04 · 03/12/2004 01:19

going to bed now, talk soon,

ladyhawk · 03/12/2004 07:16

followed this thread with interaast they are all so complex and fascinating arent they...

JaysMumWantsaSilentNight · 03/12/2004 09:08

Thank you Tess,

More books to add to the collection!!!! I think I could start a ASD lending library - my christmas list consists of even more books - sad isn't it!!!!

Theory of mind - J took my brand new lipstick off the shelf in the bathroom - spread it all over the walls and himself - I walked into the bathroom and asked him why he had done it - he replied "Not me - you didn't see me" - poor little man was covered head to toe in lippie!!!!

J has no idea about emotions - he can not understand his own feelings let alone those of others - have been trying to use a set of cards the SALT gave us - idea is that he puts the cards showing different settings to the right emotion. Only problem is when we get to the picture saying "in the car for too long" which is meant to go to the picture showing bored - J puts it on the happy face - he loves cars and can not understand how anyone could possibly ever get bored by being in a car for too long!!!!! Biggest problem is he never gets bored - because he doesn't know what bored means!!!!

KangaSantaMummy · 03/12/2004 20:44

Tess04 yes he does talk ok

He has a delay in answering questions sort of thinking slowly

Even if you ask him a simple question like:

Do you want carrots or leeks?

There is a long delay before he answers

If the answer is a longer one then it takes ages before he says anything.

I don't know the correct term the SALT used.

We will hunt out the books thanks for info

binkie · 03/12/2004 21:36

kanga, one term for those delays is "latency of response" (mentioned on link here ) - not necessarily an autistic thing, does tend to get noticed as part of dyspraxia, which I think your son already has as a diagnosis?

It's been a very noticeable feature of my ds (5).

KangaSantaMummy · 03/12/2004 22:21

binkie

yes he does have dx of dyspraxia

link wouldn't work

binkie · 03/12/2004 22:29

sorry! have just checked and the site is down. Url is www.tayloredmktg.com, or you could find the page by googling

"latency of response" dyspraxia

that's how I found it (ages ago).

ladyhawk · 04/12/2004 09:45

link working now

KangaSantaMummy · 04/12/2004 12:21

wow thanks binkie that is it

I can only skim through it as DS is due home soon but it is slow motor planning for starters.

The OT gets him to plan a course with skittles and then to go round on a body board he finds it very difficult to work out how far to place them apart so his legs won't knock them over as he lies on the body board {which is a board with castor wheels on}

I will try to read some more before he gets home.
thankyou thankyou thankyou