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Here are some suggested organisations that offer expert advice on special needs.

Original poster

Eeek. We've just heard of additional funding for the ADOS. I

14 replies

sweetteamum · 26/01/2013 17:41

We've just had a letter through saying an appointment that we were expecting to wait months for (on the nhs) will now happen in two weeks!!! I'm panicking now as to whether dd will get diagnosed or not. My dad thinks its the negativity coming out and doesn't know how she wouldn't get it.

What do I expect on the day

Do I need to take anything with me

Eeek, I'm getting all nervously excited we will have that final appointment for dd with regards to her diagnosis

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Handywoman · 26/01/2013 19:30

Wow, that's fantastic! No experience here (also waiting for ADOS) but that's really exciting, good luck. Wish the same thing would happen here!

Ineedmorepatience · 26/01/2013 19:35

Great news sweet, if you have been keeping a diary, take that with you. If not take some notes about what your Dd struggles most with.

I kept doubting whether Dd3 would get a dx right up until the psychiartrist said the the words. I think it is maybe your brains way of protecting you. I could be talking crap thoughGrin

Good luckSmile

wildwood · 26/01/2013 23:00

The test isn't scary, for them or you. It's play based and they have specific toys they use. 1 person interacts with your child, the other observes and makes notes. Tell them everything, all the habits, challenges, etc. It's a double edged sword, I found it very hard to hear "officially" that DS had ASD, but it opens so many doors in terms of support. If you use the diagnosis as a tool to get help, great. The label doesn't have to define your child. Best of luck.

crappypatty · 26/01/2013 23:19

Glad to hear that, hope it goes OK.

gs27 · 27/01/2013 10:12

The best of luck, I know the feeling my son has just had his very first app and we left feelin negative that we didnt push a formal assessment hard enough but they are writing to the school for a report and then will call for us again - could I ask how long did it take from the first app to get where you are now? x

WilsonFrickett · 27/01/2013 14:14

The hardest thing about the day is you need to sit back and say nowt. If you're used to 'interpreting' things for your DD like I was for DS that's hard! You probably won't get the results on the day by the way (unless it's very clear cut and if it's very clear cut they don't tend to do ADOS) they take a long time to review and score them - ours was videoed as well as having an observer in the room making notes. I think we waited 2/3 weeks for the results.

Original poster
sweetteamum · 27/01/2013 18:59

Thank you all so much. Tbh initially we were led to believe she's an obvious case - purely with the reports saying social communication etc difficulties. However, as the ep's report wasn't present, it had to be forwarded to the ADOS 'people' as "the pathway" people thought it would be better this way.

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marchduck · 27/01/2013 19:06

I take the red book with me to the appointments. Good luck with the appointment!

Original poster
sweetteamum · 27/01/2013 19:42

Thanks marchduck - hadn't thought of that but it'll also provide info from younger years.

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marchduck · 27/01/2013 20:06

DD was referred to autism assessment clinic by development paed. The first stage was an appointment with an clinical psychologist, without DD being present. It was mainly a review of her developmental history and some questions about us (which I hadn't anticipated). About 8 weeks later, we had an appointment with a different development paed and SALT. DD is pre-school, so it was all play based. They did the ADOS and then sent us out for 15 minutes. When they called us back in, they told us the results.
All the best to your DD and you.

Original poster
sweetteamum · 27/01/2013 20:16

Thanks again Marchduck. I really appreciate the replies. It's really helpful to know these things before we go.....I get so uncomfortable and stressed when I don't at least have a clue.

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Original poster
sweetteamum · 27/01/2013 20:22

PS, someone asked how long it has taken to get to this point.

It will be almost 12 months, but i'm one of the lucky ones......I am purely putting it down to me having private reports done initially, which triggered nhs and educational reports. It definitely took lots of mithering and not letting them forget about DD or me. I was on the phone practically daily finding everything out that I could.

DD also got classed as urgent in November, as she'd only been into school for (no more than) 2 school weeks since the start of the school year and is still in a special unit for children who are not fit for school. DD just couldn't cope with MS school.

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WadingThroughTreacle · 28/01/2013 10:53

Hi the gave me camera to record my son's! Maybe they had heard how interfering I can be! It is difficult to not intervene. A few times the psychologist looked at me and giggled nervously when he wasn't engaging with her. I thought why are you looking at me, you told me not to get involved! Also, one funny bit,when my son saw me with the camera he smiled and said cheese! It also coincided with her asking him what snack he wanted lol so she was going ooh you want cheese?! I wanted to bounce up and down with my hand up to explain to her. A very strange experience. Mine was before Xmas and still waiting for results :-(

Original poster
sweetteamum · 28/01/2013 13:53

Thanks for the insight wading

I've got a good idea what will / should happen.

I'm usually good at keeping out of the conversation at appointments. It's when I interpret things for her that will make me on edge lol

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