Don't know the wood from the trees anymore...

[genieinabottle]

Hi, DS is coming up to 5, dx of autism and speech and language disorder.

I'm finding it increasingly difficult to know what behaviours are due to the ASD, which are dues to the speech and lang.disorder and which are simply due to him being still a young child.

It doesn't help that there are no other dc of my ds's age in the family near us. And the few friends all have oldren dc apart from one who i don't see often.
My DS1 is 17 and i don't remember much of what he was like at that age, DD is 2.5 y younger than DS.
Also school seem to be saying they don't see many issues with him apart from the obvious the sp. and lang. delay.

There are so many days when i feel that DS isn't that different, i seem to see lots of NT behaviours and starts doubting that he has autism. I end up putting down his limited conversational skills on his language delays, his limited imaginative play (although this is improving) and his repetitiveness down to the sp.and lang. delay too. i don't know why i do this... maybe because it is easier to accept the language disorder than the asd.

The thing is imo, DS isn't clerly obviously autistic. Depending on the situation and environment somtimes the asd becomes quite obvious and i feel like i've been punched when this happen; but at other times it isn't obvious.
I had a bit of a shock when they (CAMHS) said DS meets the criteria for autism, i've always felt he was more atypical and i even told them that. But we were told at the ADOS his scores were in the range for autism.

Why is it so hard to fully accept... i though that when we would get the dx i'd stop the wondering but i haven't. i keep thinking maybe when DS's language skills improve more then he'll be a regular kid.
Sorry having a bad day ...am blubbing over the keyboard now.

Thanks if you've read this far.

I can really emphasise with how you are feeling, my ds (5 dx of asd) sounds very similar to yours. I too think that if his S&L improve then he will be NT. that is on a good day though! I think he certainly seems more autistic in certain situations or when he is tired or unwell.
Lots of different professionals have has diffrent opinions as well as to what is actually wrong with him - I think he was given an asd dx to access services etc and to help us as well - dx's do change sometimes.
Try not to drive yourself mad, it is such a big thing to come to terms with and he is still your lovely ds no matter what the dx is. I think I have accepted that ds is on the spectrum but will try and do everything I can for him to get the help he needs. It has taken over 2 years to get me head around it though, and loads of wine!
[hugs]

Thank you, it helps to see that it isn't just me.

Like your DS PipinJo, mine is a happy smiley boy most of the time.

In a nutshell, DS has moderate sp. and lang.delay, doesn't socially interact at the same level as peers, doesn't have the same level of imagination as peers.
In brief he does many things that peers do but a lot of it isn't age appropriate. He also has some mild sensory issues tactile and auditive.
DS also has his little quirks, gets upset easily over details that seem trivial. He can show some rigidity and dislike of some changes at times like yesterday we decided to have a meal out, got to the restaurant, sat down, DS was behaving quite nicely, then we found out they are having delivery problems and the menu was very limited. So DH said let's try the other pub down the road. DS started to act up, making noises was fighting me off when i was trying to put his coat on and ended up all tearful over this, simply because he couldn't cope with the sudden change in situation. Of course other ppl were watching and i was flustered.
At times like this i think the way DS reacted isn't typical for a nearly 5 y old.

I guess when someone looks at the whole picture his difficulties cover the triad. And i tend not to see these difficulties too much i just see DS... it's on the rare occasions that get to spend a bit of time with other dc of his age that it hits me.

Anyway i'm rambling on now

Genie, I have tried and given up replying to this three times now, becasue I don't know where to start and will ramble too! But what you say strikes such a chord, though the other way round in a sense.

Our DS is 9 and we have just been told that his auditory and sensory issues lead to autistic type traits but do not add up to an ASC. A referral for a second opinion has been agreed because of the way this has been decided (long rant but won't bring it in here). In our case I am convinced the social communication/interaction part of the triad has not been seen properly. Wish they could come and spend just a day at home with us.

This morning DS sent away the one boy he does spend time with - he was refusing to play with him and wanted to be on the computer, said the other boy could go home if he was bored. Honestly he had no idea he had said anything unkind, not a clue about anything except what he wants to do. The eating out thing would havebeen the same with us and he is 9 for heaven's sake. Another time he had been promised pancakes for breakfast at a friend's house and we were given drop scones (I forgot we were in Scotland and they call them pancakes) - he likes both but just could not cope with this not being what he expected and went to pieces.

He can speak (very sophisticated vocabulary)but has no real friends and never seems to want them, those he does play with complain as he talks all the time and directs everything, strops if it is not his way.

I know the sensory and auditory stuff is a problem for him but I am convinced there is more going on. They have put it all onto that and his anxiety so we now have a school refuser, are getting nowhere with anyone and I too have been crying non-stop this weekend.

I told you I would ramble on and I am not trying to hijack, it just seems that I can't see the wood from the trees either.

(((Hugs))) Ampersand44, i can imagine the frustration it must be when professionals don't look properly at the whole picture. I hope you can get better and clearer answers with the second opinion.

We also had a few various opinions between some of thre professionals, particularly EP and SALT who felt DS had traits but maybe not enough for a dx of asd. Even his comm.paed who was the first to suspect ASD, said DS wasn't a clear-cut case.
But in the end CAMHS multi-discp. team did a full-asd assessment and said he meets criteria so got dx.

I think because there were varying opinions between professionals it hasn't helped my own feelings towards the autism dx.
For a few days afterwards (DS was only formally dx 3 months ago) i kept going on at DH that they had made a mistake, that 'autism' was too severe as a dx for DS, who i felt/still feel is more atypical.
But hey i'm not an expert... i'm his mum looking at him in a biaised way.

It's just hard isn't it, as PippinJo has said It is a confusing condition. I totally agree.

"I think because there were varying opinions between professionals it hasn't helped my own feelings towards the autism dx"

Totally agree with this. I've had a good few months of not doing the whole is/he isn't he thing ... and trying to tell myself it doesn't matter either way as we're addressing his needs etc. But it does matter to me because the difference in prognosis/outcome between language issues leading to ASD traits and ASD with lots of language issues seems pretty big. And as much as I'm a natural pessimist I find it very hard to ignore the 'well maybe he'll get more normal as his language improves' thoughts.

Thanks genie, I needed them! You are right, it is so confusing and I feel ridiculous for crying so much that they have said not AS/ASC, when really I should be glad.

At the end of the day I know DS has certain difficulties whatever it is called, and I think because a lot of them happen away from school yet he is only assessed there I have got so paranoid I feel they are telling me I have got it wrong. (Actually there is a lot of disagreement between the professionals too.)

And it has gone on for so long and will continue to do so now, without much real intervention we just muddle along trial and error ourselves ... the school refusal and anxiety is what is finally tipping us over the edge though! I cannot get myself past the anger (with myself and the professionals we asked for help) that it has been allowed to escalate to this level.

Cross-posted - thanks pipin too!

We are off to look at special schools this week as still time to name a placement in DS's statement. Just hadn't thought it needed to get to that but maybe it is what is best for him.

Amper, Good luck with the SN schools search.

DS was attending p/t a SEN language unit and p/t ms nursery last year. I found the support and provision he got at the unit was brilliant and did help him progress loads. I was so sad when his placement ended.
On his first few days at MS school i felt like i was leading a lamb to the wolves... ok i'm exagerating a bit lol

"But it does matter to me because the difference in prognosis/outcome between language issues leading to ASD traits and ASD with lots of language issues seems pretty big." Phlebas i'm with you on this.

Hi Genieinabottle,

I could have wrote youe exact OP...apart from I have a DD...and no older DC! But having similar issues accepting dx...although not got report yet....the issues with school, the ASD/Speech delay, I think we chatted on a previous thread about school??

I do convince myself DD is NT...with a bit of a speech delay....then other days its very obvious shes ASD with a S&L Disorder! :(
Its hard to distinguish what is NT behaviour for her age, we dont see many 5 year olds, but DS (13months) seems to be making much more developmental progress than DD did.....I know I shouldnt compare but he seems quite amazing to me!

We dont know any SN DCs or parents in our area...I feel like a secret spy at school....I may just 'out' us one day....when I feel braver!

I hope your feeling better. :)

Woolytree, thanks feeling a bit happier now.
Yes, we did chat on previous school tread.

I'm the same with my youngest, DD who is 2.4 atm. So many times i'm by what she does, says and understands!
I think back to what DS was like 2 years ago at about her age, and the difference between them is striking.

@ feeling like a secret spy at school! I know just what you mean!

"the difference in prognosis/outcome between language issues leading to ASD traits and ASD with lots of language issues seems pretty big."

I just wonder if that is the case, if there is an attempt to draw a clear line when in fact the line is fuzzy! much of what many of you describe feels v. familiar - I am in similar position to ampers in that DS appears to have fallen into the "not on the spectrum" category.

wooly - I do know a few parents to kids with SN locally - someone locally has a daughter with DS, and a lady at the school has a son with mild CP (when she saw SALT coming in for DS she wondered if my DS had CP too!). oddly it doesn't actually give you as much common ground as you might think, somehow this board allows you to open up more easily than in RL.

Hi Genie - I just wanted to say that I do understand how you feel and I feel the same - I won't go into my story again on this post!

Justabout -

"It's not good for a child to be misdiagnosed because the focus of the treatment changes".

I think you have worded this brilliantly!

on the whole prognosis/ outcome / right dx thing I would really like a team of professionals to do a 360 degree assessment of DD1.

Our primary thing is the speech and language, but the more i read here the more i think there's more to it. She def has some sensory issues, and a lot of the routine things ring so true (must have the yellow plate, no one else is allowed to sit in her chair, on her cushion etc. etc.).

ASD was mentioned at 2.4 but nearly a year on and it hasn't been mentioned again. we have been in a queue to see OT for 18 months now, but as i say I want several disciplines at the same time so that we have a true picture of what the matter is, why we aren't making much progress and how best to support her... it's the not knowing and not really believing that is getting to me...

(sorry to hijack and hugs all round for weepies- another one here!)

Oh it's so difficult isn't it?! We got a very quick diagnosis for our DD2 at teh age of 2 and a half, and whilst I wanted not to believe it, and wished she was more 'borderline', it did seem to be true - and yet hardly anyone else believed it. If it wasn't for a speech delay, don't think anyone would have believed it so thank God for that .

negligent, Just read the bit about the yellow plate, her chair etc etc.. well I could have said that exactly about DD1 (except pink was her thing), but she is NT and although she obv has some autistic traits (don't we all?!), the difference is there and just so very hard to explain. I honestly don't think I would understand at all, and I would be questioning myself totally if it wasn't for my older girl and how 'good' she is.

So weird and amazing all this stuff isn't it!? can't get my head around how they can be so different sometimes and yet seem like everyone else at others. and if we struggle, what hope have those who are not in 24 hour contact with it got to understand?!

including DH!!

oh yes, second that!!!!!! and

NegligentM, I hear you. I remember only too well, the pre-dx time.

DH going ballistic the first time ASD was mentioned by comm.paed (DS was 3.4) and he kept ringing the SALT department to have a pop because DS was getting peanuts in terms of SALT, and now a paed had the audacity to say he was probably autistic.
For the first few months the word autism/ASD was not allowed to be said in our house.

I even hid the very first paed report from DH as he was so angry and in denial.
He could cope with the speech and language delays but couln't accept the possibilty that DS had ASD.

Getting DH to come to all the appointments that followed did help. As seing Bibic that helped too, as the therapist was very good with his words and positive.

And for my part just as you said it was the 'is he? isn't he?' that was the hardest. I felt in a state of limbo not knowing what to believe.

((Hugs)) I hope your DH comes around soon. And that you get some clearer answers from the professionals soon.

Well I think Im making progress with 'acceptance'...I told some friends...not quite up to a FB anouncement yet! ...then I go back into denial as Im not sure if they will change it to semantic pragmatic disorder...which is argued to not be a ASD but has similar traits. ...or it could be both depending on my psychologists opinion...so what does that mean for the outcome for DD???...Anyone else got Pragmatic disorder??

Im going on a ASD workshop tomorrow ...anyone else been on one?....as DDs Psychologist sent me she still thinks ASD?

Is bibic worth a try then? We seem to be getting progress with NHS so far...althoigh were waiting for SALT and the dx report.

Not an intentional hijack by the way we just all seem to be in a similar place! :)...hope you dont mind my 20 questions genie!?....:)

Not at all.

Bibic are really good with the sensory issues side of things.
They also did the GARS test at our request and provided a good detailled report, asd team at Camhs even took a copy of it.

We were told first by SALT that DS had sp.and language delays (at age 2.4), then a year later (at age 3.7) that he had sp. and lang.delay/semantic-pragmatic issues, then SALT at the lang.unit (age 4.6) said he had speech and language disorder/ ASD traits.
Then finally when Cahms after full assessment gave dx of autism and sp.and lang. disorder.

Enough to make your head spin!!

So as DS got older the opinions of SALT were changing.