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How likely is it ADOS will DX and be wrong?

(27 Posts)
hereidrawtheline Fri 07-Aug-09 15:21:01

DS is being referred for the ADOS test and I am getting cold feet. Basically I wont beat around the bush I am afraid he is just precocious and the negative stuff is too much my fault. I dont want him being mislabelled as ASD. If the ADOS test says he is on the spectrum what are the odds they are wrong?

TotalChaos Fri 07-Aug-09 18:42:58

I think it's highly unlikely an ADOS DX of ASD (or indeed any DX) would be wrong, ADOS is meant to be a particularly good diagnostic tool.

BONKERZ Fri 07-Aug-09 19:03:57

i remember when we had the date for DS ADOS test, i was all mixed up emotionally.
part of me was terrified they would tell me DS did NOT have asd because then it would have meant DS was just naughty and aggressive and would have meant i was a terrible parent.
part of me hoped DS didnt have ASD as autism is a scary thing and i was scared for his future and what a DX would mean for him
part of me desparately WANTED ds to have asd (which sounds absurd) but it would have explained all the behaviours and quirks and meant we were no longer guessing! IYKWIM.

from my experience the ADOS is an indepth test and enables the Dr to see minor and major traits. without the ADOS my son would never have been labelled as ASD as the more subtle traits were masked.

lingle Fri 07-Aug-09 20:14:20


In your position I'd go for it.

Best of luck with whatever you decide.

hereidrawtheline Fri 07-Aug-09 20:55:49

oh we are definitely having the test... I guess I was just wondering how much confidence I should place in it. I have been really painfully aware lately of DS not fitting in almost because people expect him to be weird and I've been wondering if I hadnt pushed for help etc no one would know and indeed he may be totally normal and it is me who is totally wrong. So basically I am shitting myself!

5inthebed Fri 07-Aug-09 21:01:26

HIDTL, the ADOS is a very accurate tool of dx and ASD. One of the women who was in on DS2's ADOS had tld me that in all the years she had been doing them (and it had been a fair few) only one child out of however many had been undiagnosed with ASD.

Have you had a date yet?

hereidrawtheline Fri 07-Aug-09 21:05:49

no we havent got a date yet. I think... I think I am hoping they tell me he is not ASD. But I am not sure. And I dont know how I can possibly convince everyone he isnt SN after the last year. I know I sound totally insane just ignore me I am really more thinking aloud than really meaning what I say totally literally.

5inthebed Fri 07-Aug-09 21:09:02

I know exactly how you feel. We had a paed appointment a few months before DS2's ADOS (actually, 3 days before Christmas) and he had said we were probably looking at autism. When we had the ADOS me and DH were both convinced they were wrong and we were just being paranoid parents.

You're not insane at all (not yet anyway)

hereidrawtheline Fri 07-Aug-09 21:13:56

Love the sanity vote of confidence grin

I just, for the first time really am finding the word autistic quite impossible to stomach. It doesnt seem to match my sunny son.

blossomhill Fri 07-Aug-09 21:21:14

I know autism can seem so scary pre dx but for me now it is actually a relief and you don't get much sunnier than my dd

5inthebed Fri 07-Aug-09 21:42:13

Tell you what, I can borrow you my DS1's word for his brother, and that is "autismic". Makes him sound like a superhero grin

mysonben Sat 08-Aug-09 09:54:19

Hi, no experience on the subject as we are ourselves caught up in the long process of a formal dx of asd.
But i can sympathise with you all the way, all these decisions are so hard to take and stick with.
We are too on a constant rollercoaster of emotions.

Bonkerz has written a reply so right to how i feel at the moment.

I would say to you "go for it" however scary it may be.

trace2 Sat 08-Aug-09 10:10:28

go for it you'll be fine ! i still wonder if we got right dx even now.

hereidrawtheline Sat 08-Aug-09 12:24:43

thanks everyone

DS is 3 today! We are setting up for his party I am taking a little tea break and praying he falls asleep I just put him down for a nap. If he doesnt he will never make it through the day.

5inthebed I love autismic! Brilliant!! Thanks for the loan grin

trace2 Sat 08-Aug-09 13:19:40

awww happy birthday little hereidrawtheline have a lovely day!!!!

5inthebed Sat 08-Aug-09 18:34:26

Happy birthday mini HIDTL! My DS2 is 4 today, and Silverfrog's DD1 is 5. Great day for a birthday grin

Hope he has a lovelyparty.

hereidrawtheline Sun 09-Aug-09 10:49:29

hello!! Happy Birthday 5's DS2 and Silverfrog's DD1 too!!!

His day was lovely in the main but was also a little disastrous. I accidentally broke his pinata when he was supposed to take the final swing, I thought it had some hit left in it still and wanted to help him out a bit as he'd been beating it happily for 20 mins but when I hit it it broke and he screamed as if he had just seen his whole happiness butchered. It was very upsetting and also hugely embarrassing as I felt like the worst mother ever as it seemed as if I wanted to break it for me. He was so angry at me, hitting me etc I felt truly awful. I even had nightmares about it all night last night! blush shock

Other than that it was good but by bedtime he was just so manic he was unbearable and not speaking anymore just making noises and it was really really exhausting. On the plus side he slept like a log as did me and DH and now we are opening his presents. He is still manic as anything though but at least not violently inclined so far today.

5inthebed Sun 09-Aug-09 11:04:08

Oh bless, I'm sure it was an accident. He would have forgotten the whole thing by dinner time anyway.

Hope you have a less eventful but fun day today.

hereidrawtheline Sun 09-Aug-09 11:23:37

not looking less eventful - I think he has chicken pox shock he has headache, rash on his arm, super irritable. I am waiting for a call back from the OOH doctor.

5inthebed Sun 09-Aug-09 17:56:02

Oh poor thing. Let us know how he gets on.

daisy5678 Sun 09-Aug-09 20:49:42

ADOS great. Very, very subtle and clever - everybody involved will have been trained very intensely.

hereidrawtheline Mon 10-Aug-09 16:04:30

I am kind of looking forward to ADOS again thanks to your reassurance. I just feel like hey, everyone says its a bloody good test. If they say he isnt ASD then I can put it to rest if they say he is then I can just accept that. Not sure which will be worse! Thank you.

DS is still sick and spotty but it isn tchicken pox, seems a viral rash.

5inthebed Mon 10-Aug-09 19:12:14

Glad he hasn't got the dreaded pox. Hope he is better today.

pinkchampagne Fri 14-Aug-09 13:59:31

My DS has to have his ADOS test a week on Tuesday & I am dreading it. I pretty much know what the outcome will be & don't feel ready to have it all confirmed.sad

daisy5678 Sat 15-Aug-09 10:50:26

Dxs are hard, but also a way to move forward, signpost help etc.

Good luck, pinkchampagne.

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