omg, my son IS on the spectrum...

[LiffeyBag]

I went in to meeting today, fully expecting them to say, well, he is almost on the spectrum, borderline, but he's not actually on it.!

Nope, he's on it and now I have tons of info to read, I have to put his name down for all these special schools, apply for grants ......

I know he's not talking yet (well, 30 words at 3 and a bit) and not toilet trained) but apart from being a bit awkward and a bit quirkier than normal, I wouldn't have thought he was on the spectrum.

That wasn't my instinct. I thought parents instincts were always right?!

Anybody else think "are you sure ???" when they were given a diagnosis?

Who was at the meeting ?

Hi, dd1 was diognossed last year with Aspergers, i kind of expected them to say 'maybe she is' but they said 'she is clearly AS'.

Dd2 is somewhere on the spectrum (so i have been told but waiting to find out where on the spectrum), Dd2 is 3 and can only say 4 words, not toilet trained and has sensory issues. We have been told she should be ok to go to main stream next year .

Dd1 goes to main stream, we have never been advised to put her in a special school. .

How old is your DS?

oh sorry i see he's 3, 30 words seems great compared to my dd2 .

An educational psychologist and his speech therapist. Both of them lovely women. I had to push the tears back down during the meeting.

We've been through ADOS and DISCO, and I put it to them that maybe I played up some of the answers, you know? made too big a deal of certain things. Leading questions perhaps. But they told me firmly that no, of the 100s of questions, some are determining the same thing, and that there's no way I could have affected the result by being dramatic. They told me I answered the questions honestly. But now I have my doubts. Did I make too big a fuss about things that my mum's generation wouldn't have made a big deal about? Like, eg, his not liking new clothes. We need to get to places first, and let them fill up around us. He's grand if we do that!! so he can't be that bad!

Also they say he doesn't interact with children, they observed him at his nursery, but I don't thing that sharing really kicks in 'til later. He was 3 last nov. He LIKES having children around him. I know he does, but he'd have no 'friends'. No boys that he gravitates towards, and I know that at 3 and 3 months my dd DID have friends, but then, she had language, and my son doesn't.

OH! I need a stiff g&t.

I agree with the interaction, at that age a lot of children don't interact, i also think boys are less sociable than girls, some of the boys in dd1's class at school don't mix (reception).

They said that on the triad of impairment, he meets the criteria in all 3 categories.

I was just saying on the other thread I started, I know they are experts, but he has always behaved in a more autistic way around them!!!

You wouldn't believe it, he has hammed it up royally on occassions. I take him to see the ed psych and he sits in the corner with his back to htem and won't take off his coat. Then when we go to pick up my older child from school he is running around and smiling with some of the other younger siblings.

Dd1 was simalar at that age (apart from her speech), she's now 5 and most of her traits have gone or she controls them better. They change so much in the year before they start school. I can see autistic traits in a lot of children (and adults), i think all of us have some Autistic traits (i know i have) .

When you get some sort of dx for a chlid, you go through all sorts of feelings. Shock, denial, renegotiating it in your mind, grief, anger...and not in that order either.

Nearly all of our mum's generation didn't even know about autism, so yes they would have explained it all away.

Sounds like a stiff g&t could be just the thing. Or failing that a stiff cuppa or two.

I think people hear the word 'autism' and think it has to be a child who'll never talk and never have friends etc etc, but it can vary a huge amount. If they've done all those thorough tests, it sounds like they know what they're doing. It's a good thing that you know, really - because you can then help make sure that people give him the right support. But right now, definitely a g&t! And give yourself time to recover. It's a shock.

Thanks Marne & Amber, funnily enough I am going out tonight. I mustn't drink too much though as I might get a bit sad...

We're not that bad, y'know

Seriously though, a night out with some mates might be just the thing

Hello Liffey - you have my sympathy over the not being sure thing...

my ds is going to be five in a couple of months, we have no dx, the paed said initially that our ds had ASD traits... at nursery his behaviour was very much on the spectrum, his language skills were way behind, speech therapist described his language as being "disordered not delayed".

We see the consultant Paed every 6 months-9 months depending on when he is available for appointments. We saw the Paed recently and the consultant psychologist just a week before - the Paed still is not ready to diagnose, says he has question marks about my ds, but because of his significant language problems he wants to wait until ds is a little older to do the ados, the psychologist wanted to do the ados this week...

The paed asked his nurse what she thought - I know it isn't really anything she is qualified to comment on, but because he asked, she said our ds is definitely not on the spectrum that the language issues are causing the asd traits - she said to us afterwards ds's eye contact is normal and that is something she doesn't see in children with asd... her opinion, I know

The SALT is wavering too - sometimes I just feel completely confused about it all!

The paed did say if ds has ASD it is mild, and that is what we are holding onto, our ds has additional needs, we know that, what it means in the future only time will tell. I am getting used to the idea of him possibly being on the spectrum every day, but we still fall into the denial bracket most of the time... for the last two and a half years!

The difference in my ds in the last year has been huge, he really is more capable of social interaction with his peers, not at their level... but his language etc has improved so much.

Good luck with getting your ds the support he needs, I think that is the thing to focus on, we are lucky, without a dx we still get lots of support for our ds.

Amber, I know he'll be ok in the end, and this may sound incredibly selfish, but he has been a difficult baby from the second he was born, and this makes me realise that nothing is going to be easy. Everything is just going to be that bit harder. Not impossible. But a more uphill trek?!

Does that make sense!

Aefondkiss, how awful to be still without a clear idea of what's going on after all this time! Have you been through ADOS and DISCO and SENCO?

Liffey, the view from the top is worth it, though and you've got lots of people here to help carry the load

Liffeybag,

I'm very sceptical about the diagnostic criteria for ASD, particularly HFA (I don't use the term "in denial" any more).

But here I am on this board! So I think you can "accept" your child's problems and get on with helping them whether you come to embrace the diagnosis or not.

My six year old's receptive language delay has resolved completely and he now has excellent social communication skills - this obviously influences the way I feel about DS2's prospects (DS2 also has receptive language delay) and makes me optimistic.

Hi Liffey. There is a huge cross over between speech and language problems/disorders and 'mild autism'. A very woolly area for almost everyone who has children in these camps.

It seems to me that its better to get the diagnosis of ASD - even if he turns out to have mostly speech issues, as you will get help and support more easily.

And even if he does just have speech issues, he will need help.

I hope you are ok.

There is so much you can do to help children with autism and many of them recover. Have a look at www.treatingautism.co.uk for biomedical and dietary interventions and I also recommend www.rdiconnect.com for a home programme.

No ADOS yet Liffey, not sure about DISCO, we don't have a senco - we have salt, ed psych, early years support and ds gets one to one at ms pre-school nursery (we live in Scotland so he is not due to start school until August) - because ds gets support we are happy to wait and see.

Sassor,

www.researchautism.net/interventionitem.ikml?print&ra=66&infolevel=4

RDI (which teaches social skills) seems to only have one very small scientific study done so far to see if it might work. Any idea when other study results are likely to happen?

I think we all expect a dx along the lines of 'He's only a little bit autistic' but to get the help you need, the dx has to be either 'on' or 'off' the spectrum even although there is a grey area in between. An ASD dx is not something you can see at the end of a microscope so there is always a disbelief factor. However at this early stage, no one can say how your child will be affected as no one has an autism crystal ball. Although there is no one educational/behavourial therapy that has been proven (to outsiders' standards) to be any more effective than any other, most agree that intensive 1-1 therapy is important to help a child develop. There used to be a contributor called Saker (?) who used RDI and from the way she described it, it sounded like re packaged common sense - that you promote language and social skills through real life situations. Uta Frith has written a new short guide to Autism book in which she discusses the expansion of the diagnostic criteria for ASD in her lifetime. It's an interesting read - which reminds me, it's an overdue library book !

I did not see much difference between DS1 at 20 months and the other children at the playgroup. Now since having DS2, I do see not just how much more language there is, but how much more imagination. Yesterday DS2 (27 months) was putting birthday candles into our juicer saying that he was going to make candle juice. DS1 thinks every object has only one function. NT children live in a world of 'what ifs?'' and experiments in life and thinking. After reading about the CHAT test, I bought a mini tea set for DS1 and was thrilled to see him pour out tea. However it was a purely functional act, he was not acting out making tea for me in the way that DS2 does. Now , he will get a cup from the cupboard and push it to me saying 'cup of tea' so that's probably an advance but it still seems to be mainly a game for him.

Did you sit in for the ADOS test? We did and found it a very perceptive test. It seemed to make ds difficulties very clear. We had DISCO as well and I think theyare pretty comprehensive tests.
My paed said to me to always rememeber that a dx is a tool for you to use as you need it. It is not tatooed on your child's forehead but it can get the help your ds needs.
Another dear friend who has an asd son pointed out that all our children would be labelled at school anyway (maybe as 'naughty or 'unsociable'). At least with dx you have a label that is accurate and helpful.

LiffeyBag: we're having DS (almost 3) assessed in a couple of months, so I think I am at the place you were a couple of months ago. I look at DS and see things that look like ASD, and things that don't look like ASD (this based solely on what I've read and MN).
It has helped a lot to hear from mums of children with ASD who report progress, and people with ASD who post on MN, and I think it's true what they say, that the dx is just a tool to get your DS the help he needs.
I just wish these kids didn't have to go through all this probing and poking and scrutiny, and being measured and found wanting - after the SLT's home visit (she was very nice, but it didn't go well) I was a bit upset, DS noticed that, grabbed a tube of toothpaste and (for the first time in his life) started banging his head with it, saying 'Naughty, naughty' and looking all sad. He must have realized he didn't do what 'he was supposed to'. It just broke my heart - and now I have to put him through an assessment, and try to pretend I don't mind if he comes out 'not-normal'. Stealing an idea from Tclanger, I just feel tempted to grab him and move to a desert island, where can run around, play with trains and hum all he likes...

Thanks cyber. Good post.

This morning, head is a bit clearer, and I think I know what you mean about the grey area, but if he's going to get any help it's better to be ON the spectrum and receiving help than borderline and missing the help.