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Waiting for the ADOS results and diagnosis

(19 Posts)
TrucksAndDinosaurs Wed 20-Mar-13 19:45:18

I wondered if anyone could help me out by remembering what they felt like during the run-up to diagnosis and the aftermath?

The clinical psychologist who administered the ADOS test and went through the lengthy questionnaires we filled in relating to DS (2.3) has said she hopes to get the results/diagnosis back to us by the end of this week.

We are not in the UK so things are a bit different here, all assessments are privately funded as is SALT, ABA and other therapies including Denver Model sessions. The psych. filmed the ADOS and discussed/shared it with another qualified person and they are the ones who will make the call together rather than a panel.

I am finding waiting for the results very difficult. I alternate between frantic reading of threads here and autism books, and trying to just carry on as normal, feeling very exhausted (I am fighting a virus/cough thing which has gone on for nearly 3 weeks - quite possibly stress isn't helping as I am rarely ill).

I am dreading the result yet also desperate to know because the waiting is chewing me up. Can you tell me how you felt before and after? It would help to know how other people felt and coped.

Many thanks

zumbaleena Wed 20-Mar-13 19:47:17

dearest trucks! hand holding thru this. it is difficult - that time but look at the bright side. you will know v v early - 2.3 yrs old My Goodness! You have time on you hand bloody...big time

OhYeaBaby Wed 20-Mar-13 20:02:40

same - in our case, I really don't think there could have been any other interpretation of his ADOS -but the suspense was all consuming until we heard from them

you take care of yourself

coff33pot Wed 20-Mar-13 20:17:23

How I played the waiting game? hmmm

There is something wrong, there is nothing wrong, I hope they hurry up, I dont want to know, they wont spot anything, they will think I am potty and its all in my head, I hope they tell me I am imagining it all and its just a dream. Its not my parenting, they will say its my parenting.

You name it I thought it smile It will be ok, its good and early if you get a dx so soon. Plenty of time to help your DC get support lined up well before school smile

TrucksAndDinosaurs Wed 20-Mar-13 22:19:28

Thank you all very much. I know people in UK have to wait horribly long and I guess I'm lucky it will be quicker here (am an expat). Downside is the crippling expense. And the lack of support: no family or friends for 12000 miles. I just wish I knew now; I'm all over the place and it's just exhausting, the hope and the anxiety and the worry and the sadness. It's hoping that it will all be ok that's the most tiring. I am grateful for the virtual hand holding here. Apart from DH there is nobody to talk to at all about it.

Hallybear79 Wed 20-Mar-13 22:51:49

thanks i've got all this to come. I'm struggling now so god help me when i get to your stage. I keep trying to tell myself to take a day at a time. Stay strong.

coff33pot Wed 20-Mar-13 23:39:47

There is always someone here to hold your hand along the way smile

This is the worst part I think the not knowing. All you can do really is be kind to yourself. When I got dx which was a couple of weeks less than a year ago now I was glad it was over, happy I could now help DS but heartbroken because I wanted to be wrong at the same time.

I kept playing the proffs words over and over like a video in my head and tbh it wasnt until I read it all in black and white that it was no longer a foggy dream.

I am fine now well fine as can be fine lol. DS is really doing well and understands himself more which has helped greatly now we have support in place for his education etc.

What I still find so tough and cant shake off is the months of non belief, blame and accusations. Its definitely messed with my head more than I sometimes admit. It hasnt driven me mad but pretty close! grin

You will get there it all takes time just pace yourself slowly.

MareeyaDolores Thu 21-Mar-13 00:01:09

Uncertainty is often worse than bad news. You feel there's a chance you can 'do something' if you're handed a difficulty. Not-knowing is just scary and disempowering.

MyAngelChuckles Thu 21-Mar-13 00:28:25

Ds(7) was diagnosed with ASD Monday so the waiting is very fresh and coff33pot has nailed it. Can't say I 'dealt' with the waiting rather than 'endured' it. Ds has been known to pead and SALT since he was 2 and had support in school since the day he started nursery so I suppose I have been waiitng to find out what Ds had for 5 years, everything always seemed to crawl, months between appointments, delaying assesments, but that last week of build up, seeing the end in sight (maybe) was nerve wrecking.

Then there was trying to decide what outcome I would actually prefer, I had focused so hard on getting to the point where a diagnosis was in sight I hadn't actually considered what outcome I wanted hmm

Take care and good luck

TrucksAndDinosaurs Thu 21-Mar-13 02:03:06

Thank you all again. So much.
Everything you have shared rings very true!
You know this path, you have walked before me and I am grateful to you for shining a light back to me.
I have just dyed my hair and painted my nails.
A small thing I have not done for months and made me feel a bit more ready to face the judgement of the world outside the front door.
I have hit a wall with reading about autism. I've read and read and read and I am dizzy now.

I think I just need to be with it all for a while and feel how it is, instead of blocking it by thinking and reading and being intellectual about it; I'm not cramming for an exam (although it feels like it) - I'm just trying to help my beloved child. He will be my only child and I waited so long for him to be here.
I love him so much. I just want to help him be happy and find his place in the world. To protect him from what harm and hurt I can. He is so small still.

WilsonFrickett Thu 21-Mar-13 11:06:05

Dizzy is exactly how I felt. I had to wait four weeks. I also had to register DS for school and left work (redundancy) in that four week period. By the day I went for the results I thought I was going to have a stroke!

Just sit with the feelings lovely. Try and find some still time. And remember the dx doesn't actually change ANYTHING. He will still be the same boy.

::holds hands and strokes hair::

Arithmeticulous Thu 21-Mar-13 11:27:08

We had two weeks in between the final assessment and going in to talk through the report. As I left the final assessment, i hung in thr doorway and said "so you're sure then there was a phone call to clarify a few dates, and I said again are you sure, then we had the meeting - and I've seen the first draft report but not got a final copy, so I still can't make poster size copies and fly post tell the school.

And although with the scores he got, he couldn't not be ASD, I'm still wondering if we pushed/influenced - I know we couldn't have, but i was we were the only ones questioning whether there was a problem.

blackeyedsusan Thu 21-Mar-13 12:09:24

what if he is not diagnosed, does that make me a bad parent?

second guessing the ados... he did that, didn't do that.

I am waiting for tests on dd for something different. I am back to the can't concentrate, scared, think I am deluded and it is bad parenting..again. convinced tht I m rong gain. reading the tests nd tinking she can't do that/can do tht...but of course there i no guidance on times/how much to achieve per age becuse I am not qualified... feel like I am running round chasing my tail.

TrucksAndDinosaurs Thu 21-Mar-13 20:07:19

Just had a fag because psych told us she is sending it over today/tomorrow. Eeek. Normally they meet in person but she is away for Easter.
Feel sick.
Knowing you valve all been through it or are about to go through it helps, thank you again.


TrucksAndDinosaurs Thu 21-Mar-13 20:44:49

I don't actually smoke any more so that was particularly random.

LimboLil Thu 21-Mar-13 22:40:06

Been there. By the time it came round I was more afraid that he wouldn't be diagnosed and the implications of that. Initially, the diagnosis cleared my head. No more am I the crappiest parent ever thoughts whirring round my head - not that I then thought I was great but I knew that I didn't CAUSE this. I wish I had known sooner, I found things really hard when he was younger and it saddens me to think of what we went through and not knowing the reason why.

youmeandtheoldzifferzafferzuff Fri 22-Mar-13 15:42:02

Coff33pot has perfectly captured it. We have about 4 more months until our 3 year old's assessment and all those thoughts go through my head daily.

Good luck for today - it must be so stressful waiting for it to arrive. Will you be able to call the psychologist today if you have any questions or will it have to wait til after Easter?

coff33pot Fri 22-Mar-13 16:23:37

I hope it arrived safely and that you are ok smile

TrucksAndDinosaurs Fri 22-Mar-13 17:26:44

Got it. Went round to office to collect as psych finished last night and then went on holiday. She usually does it face to face but didn't want us to wait. Follow up 17 April. Digesting it whilst in sole charge of Ds is hard as cant clock off to engage properly but dx is autism. Soon as I can will come back as have lots of questions but its midday and have to do lunch nap etc then if he naps will come on here again. Only DH and I know so far and he's under cosh at work and will have to work at weekend. But we will talk later; meanwhile thanks for hand holding and thanks in advance for support I am sure ill get on boards from here on in...have seen how others have had help and questions answered and just bloody glad I'm here. flowers and my first honk

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