Well, we got the ADOS results back.

[daisy5678]

I've veered between thinking that the CAMHS psych's thinking that J has autism is just down to the obsessiveness and hyperactivity, the first of which I always thought was being bloody awkward and the second I attributed to the ADHD, and thinking, OK, she does have a point, but it must only be very mild.

I had thought he'd done OK on the ADOS, would converse and do what he was told to at time, and had kind of convinced myself that he just had really really bad ADHD (and there's the silver lining in ADHD in that they can grow out of it and medication is usually effective if the dose is right).

Got the ADOS score and he scored not only above the ASD cutoff but above the autism cutoff. Total score of 20, which sounds quite high.

I know it shouldn't be a surprise or a bad thing; it doesn't change who he is, but I'm really down to think that he's SO autistic, iykwim. I'm also gutted that I accepted the initial dx 2 years ago of ADHD and didn't recognise there was something more. I know I'm not a professional, but I can't help thinking I should have known.

Hugs to you givemesleep. It is hard to find out the ados score, the shock of what it means just kept coming over me in waves, until I started to feel sick. Especially when I think my ds performed so well, at the time I thought like any other child.
It is difficult to get the results, I really feel for you.
But now you know what will specifically help your ds, and can hopefully access the resources he needs.
How could you have possibly known? That is the job of the so-called experts, when he was diagnosed with ADHD, they should have checked for signs of autism, and tested him ,to rule it out.
You are a fab mum, your ds is very lucky!

Thanks, Deeeja. I know it logically, that I am not an expert I mean, but I just feel like I want everything as right as I can get it and I keep getting new surprises about what else is wrong with him.

You've been through it last week, wasn't it? I'm glad I'm not the only one to feel that the results are horrible even if they're expected. I've been prepared for this really well; the psychiatrist has always been very honest. I think it was just that I wasn't expecting such a high score. You know - he's SO high-functioning that some of my friends are still like, oh he's just got ADHD - he's so sociable, so funny, so friendly. And he IS! So why a score of 20???

I would have been fine about a milder score because it fit with what psych has been saying for months. But such a severe score makes the future seem gloomier.

Sounds like the score might be wrong, if he is so high-functioning and can converse with people. I know what it's like - they gave my DS an IQ score of 49, yet in reality he just did not perform in the test due to compliance issues. He clearly hasn't got that IQ, and it sent me right down into the dumps. To me, he your DS cannot be all that severe if he is conversing!

I feel for you, although we havent done an ados (?yet). I am still coming to terms with the results of a private physch report(very low IQ score, lots asd traits etc) and the knock on effects for ds future and independence. I was very thrown and tearful at first as you say - adhd is something that can in theory improove with years -but now its more at the acceptance and planning stage! I hope the shock of a higher score than you espected will subside soon. It is not your fault the original dx of adhd was incomplete or incorrect- so try not to feel guilty.

Ancientmiddleagedmum - that's the bit I get stuck on - but he's sooo verbal. But the psych said it wasn't really conversing, just talking at her on his own terms (he can't keep going in a conversation), wouldn't respond to being directed, lack of normal eye contact, completely wants everything on his own terms, lots of what I think is called delayed echolalia (films, books, adults - bizarre phases which are clearly copied).

I guess they'll explain it all in more detail at our next appointment in two weeks - yesterday was just the 'headline news'. I know that these tests are all supposed to be a snapshot, but everything I've read says that the ADOS is so accurate. Don't know what to think, tbh. I've trusted everything that this psych has said so far and the ADOS was done by the local specialist in ASD/ ADOS tests and scored with her by J's psych and two other people, so I can't believe they've got it wrong...but equally I can't believe they've got it right and he's that high on their scale (or maybe I don't want to think they're right...confusing myself now!)

Trying not to feel guilty and trying to look on the bright side - this will SCREW the LEA's case at Tribunal (y'know, the oh well he should be more independent and maybe mum needs to be less over-protective so no, no full time support (even though the school can't have him unsupported at any time)). Not a massive silver lining but at least there is one.

Yes, shafting the LEA's case definitely something of a silver lining, but it's also a double-edged sword I know. Don't despair though - when I got that very low IQ result for my DS, they pretty much told me he'd never be able to do anything. I think they were ready to write him off. But I wasn't. And now here he is counting objects up to 20, learning his phonetic letters, fully toilet trained , eating properly at a table with fork, at mainstream school, sitting in cafes with us, etc etc. The real help for me has been ABA - we've been doing a Verbal Behaviour program for 2 years, and this basically retrains his behaviour and helps him to talk properly. If your son has so much speech, whether it's echoed or not, he has the tools to do really well in life. The great trick ABA gave us was to harness our boy's motivation - eg he only gets a piece of chocolate if he says "chocolate", or he only gets a push on his beloved swing if he says "push". There was an interview once with Temple Grandin's mum (you know, famous ASD professor) - that mum basically said that she never ever gave up on her DD, even when people were telling her to put her in a home, she'd never talk or use a toilet etc. She was determined to get Temple to school, to get her passing exams, even to get her to university and further education. I know not all of us will be able to do all that, as ASD kids are all so different, but that mum is the one I think of when I get really low, and that's the mum I want to be for my DS. Anyway, enough of my ranting. Get the most help poss out of LEA, use the bad news to get further help for your son, even if you don't believe it.

givemesleep what is the ADOS test and can i get hold of it or copy or something?

It's the 'gold standard' for diagnosing autism/ Aspergers/ ASD, in conjunction with a parental interview and/ or questionnaire to get a feel of the history.

It stands for Autistic Diagnostic Observation Schedule and it's worldwide renowned for being the closest thing to scientific that you can use in this sort of disorder's diagnosis. It's a standardised series of activities, and for my son, was videoed and had one psych doing the test and me, his psychiatrist and 2 other mental health people in the video observation room watching him and the psychiatrist doing the test.

The idea is that they do the same tasks with every child in the same order and in the same way, and they know what a 'normal' child would do if they said 'what makes you happy?' and what an autistic child would do.

It measures eye contact, gestures, facial expressions, quality of speech, ability to start and carry on a conversation and other stuff like that. It tests how well they communicate and interact.

My son was asked to complete a puzzle, make up a story using toys, play with toys with the tester, play with toys by himself, read a book with the tester and talk about how the characters might have felt, describe a picture, talk about what made him happy/ sad/ cross/ lonely, who his friends were and why they were his friends (couldn't do any of the emotional ones), show the tester how he does his teeth and other stuff I've probably forgotten! It lasted over an hour and was quite hard for him to cope with so he kept doing all his little rituals that he always does at CAMHS - moving the furniture, opening the doors and windows, turning the lights on and off etc.

It was really clever and really revealing to watch e.g. the tester said, to start a conversation, I went on holiday this summer. Now I'm guessing most kids would ask where she went or some other question, but J said @I go on holiday in the summer'.

I think this is probably the next step for your son, Bonkerz, as they are assessing him this month aren't they?

Ancientmiddleagedmum - I won't give up, BUT I don't really know what the next step is! The psych says that anger management/ CBT wouldn't really help and he's a bit old to start ABA now (plus could never afford it and the LEA wouldn't pay for it!)

Maybe thats what they are doing with him at CHAMS then....Feel stupid that i havent asked! Am due to attend CAMHS with DS next week and he has been for the past 2 fridays by himself and spent time with psychs and other proffessionals including mental health consultant pead. IS it tick boxes??? HAve filled in a from with about 50 questions and boxes for rarely, sometimes etc on it. would that be part of it??

Sorry givemesleep. I can imagine how oyu are feeling, it must be strange to finally have a definitive answer after so long living on suspicions IYKWIM. I still fear CAMHS will try and say DS is normal and im imagining everything!

I think the tick box thing is the interview/ questionnaire thing I mentioned. They're supposed to use your information with the ADOS to come up with the dx. I would have thought you'd be told if they'd been doing the ADOS cos a) they're supposed to ask if you want to watch and b) they apparently often video it and they have to have your permission for that.

BTW, they obviously KNOW you aren't imagining everything or else the school would think you were too, and you have their backing; plus, they wouldn't spend time assessing him if they thought you were imagining it! xx

thanks givemesleep, obviously the sane confident me knows im not imagining DSs problems because it was other people who told me about the issues so not something i have dreamed up BUt the paranoid, guilty, scared mother in me cant help wondering if i make things worse than they actually are and if hes only acting the way he does because im a crap mummy!! Oh well....

Bonkerz, I can remember thinking I was a crap mummy because everyone else seemed to be coping so much better than me. But then I found out my DS has special needs (in this case, autism) and I realised that it was harder for me because it actually was harder for me! It is not your fault, you do not have to feel bad and you are doing all the right things to get your DS help. I have just got back from a party with NF kids, which is partly sad but also partly happy because my DS coped really well despite his ASD (and there was a time when I thought I would never ever be able to take him to such a party, so they do grow up and become much more manageable). Big hugs to you!

I do know what you mean Bonkerz - I've got one woman in particular who's involved with J who clearly just thinks that I'm a neurotic Munchausens mummy who WANTS her son to have problems...yeah, because it's soooooo much fun .

I also know the one about blaming yourself. But, as with you, it was other people, professionals in education, who first pointed out J's problems to me, so it can't all be us (not saying we're perfect, nobody is, but we ARE trying our best to do what we can do and to help our boys).

Got to tell the school and the social worker tomorrow. Hope I don't just cry and look stupid because I really really want to get to work on time just one Monday this century! Would help if I could go to bed soon but I can;t because I've too much ironing and I'm sleeping really really badly since the ADOS news - 2 nights of horrible dreams, worrying I guess.

givemesleep, im sorry your not sleeping. How did it go at school this morning???? It must be such a mixture of emotions for you right now. Hope oyu are ok.

Just realised i did have to sign a form to say they could video DS so i think he has had the ADOS test!

It went OK at school. No crying!

I know I replied on your other thread - getting confused!

It all feels more real now and like there's a way forward. Doing lots of reading up and it gives me hope that there's a whole lot of new things to try that might be more relevant to his needs - I get the feeling that EBD/ ADHD strategies are wholly different from those used for ASD in the classroom.