ok, talk to me about dx procedure

[worriedmum101]

dd2 has possible ASD. she is fully supported at school WITHOUT a form diagnoses. We have been umming and arring over it for months, but i think come sept I want to get the ball rolling.

She has become very tearful again, and isnt coping with the end of term changes to her schedule.

The school have been excellant and said they will support us down this route, and do everything they need to.

I do think we have now reached the point where we need some professional input and support.

it wont change who dd2 is, but may help her cope with the changes she faces as she gets older is and expected to be more independant.

sorry, its misdee, dont out me on my namechanging thread

Well the diagnosis path really varie a lot from area to area.

In the begining, ours consisted of many reports from EP, SALT, Area senco, nursery teacher, requested by the Community paed following our first appointment (where she gave us her verbal opinion that B was very likely on the spectrum).
After the second review with CP, she then had to discuss B's case to a City Autism Liaison meeting, before they agreed to refer to consultant paed.
Consultant paed who in turn did a quick assessment of B and a quick chat with us, before referring on to Cahms ASD team for formal assessment.
Then we saw one of the paed from the ASD team, for a nearly 2 h appointment before B's name was finally put on the waiting list for the full assessment.
On the assessment day we saw another paed, another salt, and a clinical psychologist who all did their own independant assessments (ADI ; ADOS; and another test to check non-verbal reasoning), DH and i were not in the room when they were doing the tests as we were into another room doing the ADI during that time.
Then the ASD team had a short meeting without us, then called us in to tell us of their findings and of the DX.
Now waiting for DX report.

It took just over 14 months from first appointment with comm.paed to actual assessment and DX. I guess we were lucky and although there were many 'hoops' to jump through it was quite straight forward.
I think the longest time gap we waited for, was for the first appointment with Comm. paed, that took 5 months on its own... because of HV who had observed B at nursery (nursery had asked her to come in) was taking her sweet time to do the referral! after 4 months of waiting i got fed up and went to GP who promply referred to CP.

Forgot to say good luck!

I'm at the begginning too. I got my GP t refer to paed...then rang the paed secretary (which I would do to confirm because turns out they referred to wrong type of pead lol...sved a lot of time). I also got nursery t arrand vissits from EP...not happeed yet still waiting....

I can tell you what we did to get a DX for our DS, if that helps?

We got a referral to a Paediatrician from our GP. The appointment took about three months to come through (I have since learned that it is sometimes possible to hassle your way up the waiting list!).

We were then referred to CAMHS (child and adolescent mental health service - often involved in assessing children with ASD), who then referred us on to a Speech And Language Therapist.

In the meantime, the school made a referral to an Occupational Therapist, and sought advice from an ASD advisory teacher from the borough.

This whole process took over a year and was quite frustrating. Eventually, CAMHS referred us to a service within our area that does ADOS/ADI - a full-on multi-disciplinary assessment for ASD. By that stage I was hacked off, kicked up a fuss (because we had effectively already had a multi-disciplinary assessment - poor DS had been seen by every bloody professional in the borough!) and DS received his diagnosis in a short appointment with the Paed we'd originally seen!

Sounds nightmarish now I have written it down, and it was, but it did generate a hell of a lot of paperwork, which has come in handy for getting a statutory assessment of my son's needs and, crucially, a statement.

When you say 'fully supported' at school, what do you mean? Is your child on School Action or does she have a statement?

LOL tribunal she my sister different sides of area, think hers is worse than mine tbh

she has social skills group, and access to senco.

her needs are met, and the school is just fab

school has been very good.

not 1:1 but she generally doesnt need that as is happy, settled and very bright.

misdee, our process was actually incredibly speedy - initiated by school when DS was 4.5, and took 3 months from referral to DX. Two multi-agency assessment mornings where he was seen by OT and SALT and observed by paed for about 10 mins. Paed then went through what was referred to as a 'semi structured interview' with us (probably took about 3 hours in total to go through across the 2 morning sessions). We received the DX at the end of the second session.

If anything we were [shocked] at the speed of it (particularly when I read posts from others about how long their DX took, and particularly when you consider that DS is only really at the milder end of the spectrum) but I guess that just goes to show it depends where you live and who you see!

misdee, it's great that the school are supportive. Just bear in mind that a change in staffing or budget at the school could change all of that. I'm not being pessimisstic, just that if a child has additional needs, it is really important for that child's future that those needs are officially recognised nad catered for formally. Otherwise, you are at the whim of the school, really.

Equally, if your DD's needs change, the school (with the best will in the world) may not be able to support her adequately within their budget. Worth pursuing diagnosis if you believe that it is relevant. Is she not on School Action?

misdee

speak to school to get ball rolling but also go to gp...a two pronged approach csn help speed things up

if my memory is correct, you have had comcerned for some years

yes we have had concerned on and off since she was a baby.

school have said they will support us through the dx procedure which is a relief. as when her pre-school riased issued 4years ago, they backtracked by the time we got to cdc appointment and wrote and said 'no concerns' wtf?? which is why i havent persued it as felt like thry thought i was a nut iyswim.

school aRE def noticing her differences.

as genie has said, the process varies a lot from area to area, so if GP/senco don't know the details, I would google for your local pct and/or children's hospital, and see if they have an ASD team, and phone them or local CAMHS to ask about usual procedure and likely waiting times.

agree with reasonable doubt about gettin things on as formal footing as possible, given current political climate, cuts to public sector funding etc.