Got dx but nothing is happening...arghhhhh!!!!

[genieinabottle]

Sorry another of my rant

I'm utterly fed up! DS was assessed and dx with asd over 10 weeks ago.
Still no dx report in sight.
So i called them (Camhs) two days ago, got anwserphone and left message and my phone no.
No one called me back.

Phoned again this morning.
Got through to someone but hey ho the secretary who is in charge of reports is off today, so have to phone again on monday.

Next wednesday DS's teacher and LSA are coming over for a home visit. I was hoping to show them the report ...no fat chance now.

Also the assessment team made may recommendations re: school, i feel awkward 'demanding' that autism outreach is involved (that was part of the recommendations) when we don't even have a report to show yet.

Genetic testing for FragileX and refral to OT were also recommended. Comm. paed is supposed to arrange these. But i guess if we haven't received the report then neither does she, nor EP , nor SENco.

So since DS was dx , we have heard nothing nor seing no one... i feel like they gave the dx and left us in the lurch.

That's seems to be a fairly common experience. It does seem odd that diagnostic reports seem to take so long to complete. It's frustrating because such a lot hangs on the formal diagnosis. I hope you get some joy soon.

If you can talk to them Monday and it's ready, they could email it to you possibly.
I got soft copies of all dd's dx reports.

were in the same boat, only got initial dx, no report, another appointment in two weeks....that I had to beg for as they offered November!

We did however meet school SENCO before dx with the help of an Inclusion teacher for our area, she works with autism outreach, school and dx to make sure DDs needs are met, Possibly worth seeing if your area has one....my HV referred us.

Its very frustrating all the waiting, hope you get your report soon. xxx

Thanks, i will ask them and suggest a copy via email so i could still just maybe have it by wednesday for when teacher comes over.

It's so frustrating though. Camhs on the day of the assessment told us we agree on a dx of autism and speech and lang.disorder, you can go ahead and verbally inform school about it until you get the dx report.
So we have. But now it's been over 10 weeks.
DS is soon starting school and still no report, and no further appointments.

Just feel hands tied.

genie

Not an uncommon experience I am sorry to say.
Can someone e-mail the report to you on Monday?.

You have a verbal dx from CAMHS; use this as leverage re the statement application. I realise they turned you down last time around, would urge you to try again on this front.

How frustrating. Start muttering about PALS.