Half way to 'diagnosis'

[llisa32]

Hi,

 

We're due back at Cahms mid month for hopefully a 'formal' diagnosis as all the relevant reports from the SALT and ED psch will be in by then.

 

But..just got the ADOS and DISCO report summary today and it said based on those assessments J meets the criteria for a High Functioning Autistic Spectrum Disorder.

 

It also goes on to say this is largly because of the mixed developmental milestones they got from me!! - told you my memory was rubbish!!

 

But...I'm pleased with the report, and the Ed Psch has been an absolute gem in terms of helping J and helping the school to understand him - she did her second follow up with him on Monday and has promised to get her final report into Cahms in good time for our appt.

 

The Ed psch firmly thinks the diagnosis should be aspergers but she said many psychiatrists are relectant to 'diagnose' - she gave me the name of a local Pead should I want to follow up after the Cahms appt (depending on how that goes).

 

But...being as they have 'started' a diagnosis, I feel quite hopefully we will get one, and then we can carry on getting the right support in place etc.

[witsend]

It takes some time doesn't it?

Good luck - hope you get further sooner rather than later

Luv Witsend.

[Clare63]

It can be a long and rocky road, but you'll get there, sounds like you have some good people on board.

 

Wishing you much luck for a speedy dx.

 

<'> Clare x x x

[rainbow queen]

good news .......... <'> ><

[llisa32]

Thanks guys, it's weird that a bit of progress can make yu happy isn't it? ...I've actually been quite chirpy today now, and almost relieved a little cos I now have at least in black and white on several diff reports exactly what his difficulties are and how best we should support him etc.

 

So although the last 9 months have been completely knackering, and I currently feel like rubbish in terms of health (seem to have a viral lurgy thingy that doesn't want to leave me!!) at least I can now see some progress in the right direction.

 

Thanks for your thoughts <'>

 

And a big thanks to everyone on the forum actually - you lot have kept me sane (sorta ) lately <'>

[pearl]

Glad you are making progress llisa <'>

[Lucas]

Just a question I want to ask about ADOS: how long was this actual test?

 

I'm asking because a parent on the US Autism Speaks forum mentioned that her son had done an ADOS assessment and it took just one hour. I remember when I was diagnosed, the whole process took a lot loner, more than two days. I don't know wether that was because I couldn't focus or if the test itself is supposed to take a lot of time.

[KarenT]

Really pleased that you're on the road to dx, but a word of warning.

 

We too were told that ADOS results (and other earlier tests) showed a high indication of ASD but by the time all the results were in they couldn't give a full dx and we had to go for a second opinion - this took another year before we eventually got a dx for J. ADOS is only one of the tests and they balance all results to give a full picture. I really, really hope you're one of the lucky ones and nothing comes up elsewhere to raise questions, but you're not out of the woods yet.

 

Karen

x

[Karen A]

Just a question I want to ask about ADOS: how long was this actual test?

 

I'm asking because a parent on the US Autism Speaks forum mentioned that her son had done an ADOS assessment and it took just one hour. I remember when I was diagnosed, the whole process took a lot loner, more than two days. I don't know wether that was because I couldn't focus or if the test itself is supposed to take a lot of time.

 

I think about an hour to an hour and a half is usual.Karen.

[Karen A]

Lisa.I am glad you appear to be making progress and hope that the other asssessments are completed soon so that you have confirmation.Karen.

[Flora]

Lisa, hope all goes well and you get the right answer. Flora <'>

 

___________

 

Regarding the ADOS test; a famous autism expert based in Oxford told me that the ADOS test, when done properly, should be done in no less than 3 x 45 minute sessions. This is because there are 3 different sections and each one should take at least 45 minutes. Usually, because of time and resources a shortened version of the test is administered. If this is the case then it should not be the basis for a diangosis, which should then be made in conjuction with more other specialised assessments and observations and diagnostic interviews.

 

edited to add: Bill had a short version of the ADOS because his dx was so obvious to everyone assessing him. Ben had the full ADOS and it took the whole summer holidays to administer as he was almost non-verbal and didn't have very good receptive language at the time. I took him for one hour a week for 5 weeks. We still got a very 'woolly' dx for Ben (semantic pragmatic disorder and autistic traits), which at the time I was naive enough to be relieved about; afterwards when I was more in the know I wasn't very pleased HOWEVER, and this may reassure those who haven't had a straight forward dx following ADOS, they were absolutely right not to give the label because quite frankly as he's got older (he's 11 today) you would never believe his history of development as he functions so well in most situations (not to say he doesn't have his quirks and difficulties but not enough for me to get concerned about anymore). His records of the assessment show he did have results on the spectrum (def not AS more HFA), but they decided with the spd and ASD traits because it was less frighteing for his poor mother which despite my initial relief for a while I was quite cross about when I read that, however I'm really convinced now that they did the right thing. I know that often kids are mis diagnosed, or mis not diagnosed! however I think a lot of the time they do get it right.

Edited February 7, 2008 by Flora