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Private Practitioners using ADOS . . Recommendations please.

(22 Posts)
sweetteamum Tue 27-Nov-12 22:50:34

I'm looking for recommendations to get dd a diagnosis using the ADOS. Dd is currently on the CAMHS waiting list but its likely to be another year or longer.

I'm still going down that road but we need a diagnosis of asd to have a chance at getting in the perfect school for dd.

Should I be asking the school for this kind of info or not? I'm worried they'll think I've wasted their time looking now.

I've heard of belle vue house use this in ormskirk and will contact them tomorrow.

crappypatty Tue 27-Nov-12 23:34:31

Have heard good things about Belle Vue House but very expensive. Its awful being on that waiting list, especially when your child is struggling. Have the multi-disciplinary team agreed that probable dx is ASD? do you have anybody onside who can push for ADOS on your behalf.

Asking school for what info? which school are you looking at?

sannaville Wed 28-Nov-12 06:50:16

The Portland hosp do ados. How much is belle vue btw?

sweetteamum Wed 28-Nov-12 06:58:53

Thank you both. There are various prices depending on what you need. I'm going to phone later and discuss in more detail.

Do you know if I can ask for a second opinion now the pathway have kind of decided next steps?

It was the school you recommended and is perfect but you have to have a dx

sweetteamum Wed 28-Nov-12 07:01:54

I'm presuming the team agree its asd but I just don't know who goes to the meeting, if its everyone that works with her or people who have just seen reports.

I take it they go for ados when there's doubt from a few people or they've all not agreed in meeting.

CwtchesAndCuddles Wed 28-Nov-12 08:00:09

In my case everyone was agreed ds had asd but we had to wait for the ados for the confirmation as that seems to be the pathway here - almost all but the most severe have ados.

sweetteamum Wed 28-Nov-12 08:14:27

That would explain a lot then. I think they do agree but want that confirmation with ADOS before they tell us for definite that its that. She did mention it was difficult to see just how much different she behaved in school and home as shes too anxious to attend at the moment. They certainly don't think it's anything else and wouldn't put us on a huge waiting list for nothing.

crappypatty Wed 28-Nov-12 09:12:44

I agree with cwtches until ADOS no dx. we had paed reports stating Autism dx on top, everybody agreed but without ADOS nada.

I know they are working through list at a faster speed than when we were on it as they have trained people up. We were on the list to go on the list ifyknwim then a year on the list and told that it would be another year.

A professional who was working with ds re:social stuff rang up (who??) and then rang me and said you have ADOS next week. that is the reason I asked about anybody who may be able to help push things along.

It is the hs we are hoping for ds to attend, a friends son goes and she can't praise it enough.

Have you tried your local MP?? As she is out of school due to her anxiety I would see if they can help. NICE guidelines state how long wait should be, will have look for it gotta go to a meeting.

Handywoman Wed 28-Nov-12 09:30:04

I think NICE says 3months or somesuch – what a joke - there are many places it seems, with a year-long wait. We are 5 months into on a 12 month wait, although in our case there is no consensus but I am still trying to get it pushed along, as more questionnaires and reports come in, I keep ringing to see if it can be moved forward. OP I think if your child is not in education they really need to assess as a priority?

HW xx

sweetteamum Wed 28-Nov-12 09:37:25

Thank you both so much for the information it's really helpful. I do get overwhelmed with so much info sometimes!

Well, she's been out of school all october and november so far and has had some of september off too.

I haven't tried MP actually - Do you have to go through councillors first then get to MP or can you go straight to MP.

sweetteamum Wed 28-Nov-12 09:38:48

BTW, it's reassuring to know that they still think it's asd but want the ados to confirm and cement it. I was so upset when I found out yesterday and was convinced all reports were wrong.

crappypatty Wed 28-Nov-12 10:23:08

Your local MP should have a surgery, best place to find out when and were is your library give them a ring.

sannaville Wed 28-Nov-12 10:33:22

We've been waiting a year for ados and I believe we are still on the thinking list as opposed to the actual waiting list!

sweetteamum Wed 28-Nov-12 10:56:26

Ill look into the surgery option and go and see mp.

Oh bloomin Nora. They've got a thinking list aswell as a real list.
How do I get to find out what we're on?

WilsonFrickett Wed 28-Nov-12 12:23:33

Phone the place where you're on the waiting list and speak to the secretary there. Be exceptionally polite and friendly and non-pushy, but say you're on the list and would be happy to take any last minute cancellation slots, should such a thing every happen. We cut three months off our waiting time grin - however, I didn't think of doing this until I actually had an appointment, which was six months in advance iyswim. But it worked.

sweetteamum Wed 28-Nov-12 14:01:44

I have called and been told it's about 3/4 months and they are working as quickly as they can and they have lots of back-log for children who have been on the list for a long time.

I spoke to DD Therapist yesterday who told me it would be many months before the ADOS would be available - I don't know what to tell the specialist school as they won't agree on her going unless they have a diagnosis.

Can I not ask the panel to reconsider or get the minutes from the meeting. Do the people on the panel even know our children or do they go off reports only.

WilsonFrickett Wed 28-Nov-12 16:45:08

3/4 months isn't too bad, I hear it's a year in most places. Not that that helps your situation of course. Do you know 100% for definite the school won't take without a dx? I don't mean to sound patronising at all sorry but I mean have you had the conversation with them, as opposed to a HCP iyswim.

KeepOnKeepingOn1 Wed 28-Nov-12 16:55:41

sweet - Margo Sharp (specialist SALT) is authorised to use ADOS and DISCO and to diagnose ADS. She sees DC privately (she is in Birmingham but will travel (you're paying!)) and will conduct assessments for a child out of school. She has a particular interest in girls on the spectrum. Cost ya though. DD would have a diagnosis and a lot faster. Margo did my son's assessment and I am appealing indi ss. PM if you want more details.

cornycarrotshack Wed 28-Nov-12 16:57:20

Yes ask the school
My ds is in ind ss and has no dx

crappypatty Wed 28-Nov-12 19:32:49

The school in question does need a dx, it is provision attached to the school but funded by LEA, places are decided by special school panel which sits in Oct. Places are very limited. I am in fear of ds not getting a place, I don't know what I will do tbh.

Have you been in touch with Parent Partnership? I have found them very good and knowledgeable in our area.

CouthyMowEatingBraiiiiinz Wed 28-Nov-12 23:30:19

3 months wait for Autism assessment? Hmmm, interesting. DS3 was referred in October and I have just been told he will get assessed at some point in May (though no firm appointment yet).

sweetteamum Thu 29-Nov-12 05:51:42

To be honest, I don't think they know when they'll be assessing her. The woman wasn't very sure and said she hadn't had the minutes back from the meeting hmm

I do have Partnership involved, but I hate asking for help myself!

I will try and google Margo Sharp and hopefully find her with ease :D

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