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I know there are MNs with a lot of knowledge of ASD. Could you help please?

(15 Posts)
thefirstMrsDeVere Wed 17-Nov-10 20:43:10

Bit of background. I post a lot but its all a bit disjointed so I had better make it a bit clearer smile

DS2 has LD and auditory processing disorder and at Easter he was dx with ASD. He is 7.

He has a complicated background as he suffered early truma and neglect as an infant and several losses.

I was very suprised that he was dx with ASD as I didnt think he was autistic. I knew he had traits but thought these were because of attachment problems and LDs and APD.

He was seen at CFCS but senior pysch who interviewed me, assessed DS and dx as autistic. I asked what end of the spectrum (expecting to be told at the mild end) and was told at the high end of the middle.

All this coincided with DS being moved to a SNS from mainstream and me having DC5 (all happened in the same week!).

DS was then discharged from CFCS.

I work with autistic children. They are preschool and the majority are described as having 'classic childhood autisim'. They are usually non verbal, dislike contact, are very sensitive to noise etc and are I suppose what most people would imagine when they think of autisim.

My DS isnt like this. He had speech delay and his speech is still a bit idiosyncratic (please excuse spelling) but babbled as a baby and followed a fairly normal developmental curve.
He is interested in his peers.
He is friendly and affectionate in his own way. He leans rather than hugs and when you ask for a kiss he leans his head towards you.
He doesnt stim although he will chew on bedclothes and clothing.
He does have obessions i.e. Dr Who and is currently driving me nuts with Sarah Jane Adventures.
Sorry this is a bit of an essay. I am a bit confused. I think he is more on the Aspergers side of things but he was definately dx with Autisim.

Because all my experience is with very young children with severe disabilities and delays I feel a bit at a loss regarding my DS.

What do I do next? There is no more input and I am left wondering what to do for the best.

I simply do not have the expertise or experience and do not have any RL friends in tthe same position. There are no support groups locally apart from one for High Functioning Aspergers.
I dont even know what I am asking for but any advice or input would be welcomed.


silverfrog Wed 17-Nov-10 20:55:38

I'm not sure what you are asking, but will happily chat about anything smile

my dd1 is classicly autistic (I often use the phrase myself).

she too is very interested in everything around her (historically less so in other children, but this is much improved now. always fine with adults though)

she positively craves attention, in an NT show-offy child kind of way.

she is completely affectionate, and very close to a number of people.

she does stim, but not excessively so. her stims are usually language based, though, so easy to overlook them as ballsed-up language development, iyswim?

the classic difference (I was told) between a dx of AS and a dx of ASD is the timing of language development - before 2 = As, after 2=ASD.

dd1 is seen by some as high functioning, by others as severely ASD. it depends on your viewpoint I supose.

she is chatty (with delayed language skills), and sociable, so that is a high level of functioning, I suppose. but she is entirely prompt dependent, and is unlikely (it seems, at the moment) to ever live independently, so not really so high functioning after all, imo.

remember that a lot changes in the later pre-school/early school years.

dd1 today is comletely unrecognisable from the child she was at 3. a totally different child.

and form the toddler she was? well, that was clearly someone else that I remember not noticing me at all, being indifferent to touch, not playing with anything at all, just sitting in the corner and scratching the wall until her hand bled.

It is hard to not have RL support - I have none either, other than dd1's (brilliant) school. does your ds' school not have coffee mornings, or similar?

BialystockandBloom Wed 17-Nov-10 20:58:51


Sorry you've had a hard time finding support for ds.

I think it can come as a surprise to many of us that our dc are diagnosed with ASD when they seem not to fit the classic picture as you describe. My ds (3.6) has recently been dx, and although younger than yours sounds similar.

"He had speech delay and his speech is still a bit idiosyncratic (please excuse spelling) but babbled as a baby and followed a fairly normal developmental curve." yep mine too
He is interested in his peers. yep
He is friendly and affectionate in his own way. He leans rather than hugs and when you ask for a kiss he leans his head towards you. yes yes yes
He doesnt stim although he will chew on bedclothes and clothing. actually mine has a few occasional stims but still not that obvious
He does have obessions i.e. Dr Who and is currently driving me nuts with Sarah Jane Adventures. not got to Dr Who yet but yes to obsessions

Since his diagnosis, what help have you been offered? Sorry, I don't know what CFCS is, and I realise it's a bit more complicated as he has other dx, but when you say "no more input" do you mean the school or paed team have said nothing?

Have you looked as NAS website for local support groups? Also, find out about Earlybird courses.

IMO thogh the most important thing is that you feel he is getting the support he needs (and you get the support you need) in order to cope, and for him to be fulfilled to his potential. If there is more you feel you need in any of this, go back to CFCS (or his regular paed?) and demand more info about what support you and he are entitled to.

BialystockandBloom Wed 17-Nov-10 21:03:51

x-posted with silverfrog. I agree, the place they are deemed to be on the spectrum isn't really relevant. A HFA or AS diagnosis doesn't mean life is easier for a child with ASD, or that the difficulties are easier to overcome. A child who is HF in some ways (such as language or academic progress) may be totally unable to deal with social interaction, for example. I am realising now that a profile for a child with ASD is, as they say, seriously spiky.

LunarRose Wed 17-Nov-10 21:06:13

Can't add much except to say that ds is very chatty, what is less obvious is lot of it is echolalia and we can trace the phrase back to books, tv etc.

Also very affectionate, in a kind of I'm going to hug your head off kind of way, bless him he doesn't quite get it right grin

lisad123isgoingcrazy Wed 17-Nov-10 21:09:14

<waves knowing wave to MrsD)
DD1 has a dx of High functioning Autistim which I was surprised at too, please dont worry too much about the label itself, some say HFA some say Asbergers. Autistim does tend to get you the help and suport you need moreso.
You need to think about where his difficulties are. Does he need more help with understanding his peers and relationships? Does he need more help in managing his behaviours?
Do take time to accept this dx and also to read but not let it overrun your life.
Are school on board?

It might be worth keeping a diary for a week or two to pinpoint anything that may set him off, pattern will be easier to spot that way

Get in contact with NAS, and would highly recommend BIBIC too

daisy5678 Wed 17-Nov-10 21:17:08

The National Autistic Society website will tell you what there is in your area in terms of provision; there should also be a disabled kids bit on your local council website, or a disability team social worker might have some info.

Have to say, your ds sounds similar to mine - all those things pretty much describe him (except Dr Who) except he is also violent and quite prone to total meltdowns.

I guess the main thing is that input only needs to equate to needs. If his needs are currently being met and there are no unresolved issues at home or school, I'm not sure what you need to do, iykwim, more than what you're already doing. Support groups are good though and it is worth asking around.

thefirstMrsDeVere Wed 17-Nov-10 21:25:39

Thank you all for your quick replies.

CFCS = children and families consultation service (CAMHS really).

He was dx just after he had been accepted into his new school. School doesnt really have a lot of autistic children as they tend to go to the other local SNS which specialises. TBH I am glad. I dont feel he would have fitted in at the other school or have met their criteria and would have been stuck in mainstream.

Because he has LD I find it difficult to get my head round the whole HF thing. I suppose in regards to his ASD he is HF because he can function in society although I think this will get harder as he gets older. But he does not have a high IQ (or average) and therefore finds most things pretty tricky.

For eg if you asked him to take the duvet cover off his duvet he wouldnt know what a duvet is. He is 7. The majority of 7 year olds would know what a duvet is even if you never pointed to one at anytime and said 'this is a duvet'

We have bee totally discharged from CFCS and he is too old for Early Birds etc. When I was told about the Neuro pathway I assumed it was the beginning and was pretty shocked that dx was the END hmm

I think a diary is an excellent idea. Its so difficult to explain what he does and why the things bother me.

I have posted about his obession with sweet food before and we have to have a lock on one of our kitchen cupboards.

I dont know if this makes sense but
Now his LD are being addressed by his lovely school, his ASD traits are becoming more pronounced. I am beginning to be able to pick apart the different issues.

I think as his learning is improving it is easier to see the gap in his social skills.

I took him to church the other week. He was keen to go to the kid's group. Luckily the leader had two kids with ASD. I watched him with 6 children of his own age and he was just so different.

But I wouldnt be able to put my finger on why.

So I think I should write things down.

Shall I tell you about last night when he didnt get to the loo on time and thought it perfectly reasonable to wipe his bum on his little brother's duvet cover? smile. He just couldnt see the problem! He had a dirty bum, he need to clean it, he certainly didnt want poo on HIS bed.
Cant argue with that can you?

Thanks again everyone. I dont know what I would do without MNs sometimes [needy]

colditz Wed 17-Nov-10 21:28:43

Aspergers is a type of Autism, the diagnosis won't say Aspergers.

Ds1 has Autism, it presents very Aspergersy.

thefirstMrsDeVere Wed 17-Nov-10 21:34:03

I think that is a very good point.

DO I need to do anything? I am not sure TBH.

His school is great. But I feel the ASD is becoming more noticiable as he gets older.

So maybe now is the time for learning more about it and later for pushing for social skills training etc?

Its such a huge spectrum isnt it?

V.confusing smile

colditz Wed 17-Nov-10 21:34:43

Ds1 probably has a high IQ but he does the most ridiculous things and can be incredibly pedantic to the point of ending the damn conversation and letting him think he's right because otherwise I'm going to scream.

ie "Ds2 still hasn't said sorry for drawing on the sofa"

"But that was 2 years ago!"

"You said he had to say sorry, he hasn't said sorry"

"But now we have a fdifferent sofa " etc etc etc until today I said to him "Ds2 said sorry to me last week while you were in the bathroom, now drop it."

That was a lie and I don't care.

High functioning means how much their Autism affects them - he may have had a below average IQ without the Autism thrown in, so it's not about his IQ, it's about the way the diagnoser feels the Autism has impacted on his abilities.

thefirstMrsDeVere Wed 17-Nov-10 21:35:53

That is what I always understood colditz.

But isnt there now a move to seperate the two dx? They seem to be spoken of as related but seperate conditions now.

But only by some, which makes it even more confused

thefirstMrsDeVere Wed 17-Nov-10 21:40:51

X post Colditz

I dont blame you for fibbing. I have done the same thing.

One of the things DS does is suddenly start talking in great detail about my DD who died 4 years ago. They were very close. I am used to it but it can be a bit upsetting when he catches me on the hop. He has absolutely NO conception of how it affects those around him as he says in a very loud voice 'I had a sister but she is DEAD isnt she mummy?' then goes into a long monologue about cancer etc. It causes no end of embarrased coughing and shuffling which can be quite funny if I am in the right mood.

Its one of the things I have to warn people about if I think something will set him off i.e. remembrance Sunday at Sunday School.

embracingtangents Wed 17-Nov-10 22:09:07

DD age 11, was recently diagnosed with Aspergers. I was shocked too mrs when the dx was the end of the road.

We were given a reading list and a suggestion for a support group. Somehow I thought there would be something in place for a family like ours. Dealing with some difficult things at home.

There are many people on here more knowledgable than me but I had formed the impression that there are moves towards doing away with the Aspergers label completely and only having ASD as the dx. I also thought that those with Aspergers have average to high IQ and good language and speech ability.

The poo on the quilt cover made me laugh. At least your DS sees the need to wipe. DD has no inclinations in this area....

tabulahrasa Wed 17-Nov-10 23:13:51

He was seen at CFCS but senior pysch who interviewed me, assessed DS and dx as autistic. I asked what end of the spectrum (expecting to be told at the mild end) and was told at the high end of the middle.

to me, that's you and the psych talking at cross purposes - the high functioning end of the spectrum is the milder end

Asperger's is an ASD, so a diagnosis of ASD doesn't rule out Asperger's - it's just less specific and embracingtangents is right there is supposed to be a move away from Asperger's diagnosis and just a generic ASD diagnosis

My experience is also that there is nothing after the diagnosis particularly, you're given a label and sent home to get on with it

If you're able to do things like social skills - I wouldn't wait, the younger the child is the better tbh

and yes you want to find out about it, but, ultimately that matters less than knowing the individual child anyway...

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