DD12 just started with GP for Autism referral - what to expect?

[Millenialmom]

My 12DD has just been accepted by GP for an Autism assessment. I have no idea what happens next but the GP said there is a 12 month wait? Not sure what to expect next?

also they’ve said we will need evidence from school but she masks all day at school and then has a break down on the way home. School won’t really have any strong evidence I suspect, will this hinder her assessment?

brand new to this so TIA

What happens next varies area to area. In some areas you will hear nothing until DD is top of the list for assessment. In other areas you have an initial triage appt. In other areas you (and sometimes school) get screening questionnaires before the first appt.

Good assessors will be aware of masking.

Oh it sounds like we’re the third option as I’ve been asked to collect an assessment form tomorrow. I can’t believe it’s expected to take an entire year!

A year is actually quite quick. Many are waiting years.

In our area, we first approached the school with concerns about DD7, they did observations, agreed to refer for ASD.

A couple of months later (August), we had an initial triage appointment with paediatrician, who asked me an hour's worth of questions, did a physical examination and brief observation of DD and agreed further assessment needed, also recommended the school refer for ADHD (separate process). Gave me ASD screening forms for both us to complete and the school. Said that when those forms were returned, the forms and her report from initial appointment would go to a panel who would then decide whether DD would be put on the waiting list for assessment. Said waiting list for ASD was then 2-3 years (and ADHD 1-2 years).

Since then, school has referred for ADHD (waiting for any contact on that) and also waiting for panel meeting and decision (she said the panel met monthly so hopefully this month).

It's a very long-winded process here...

In the meantime however, I have requested Right to Choose referrals from GP.

Agree that a year on the NHS all in is pretty quick! We only had our initial triage appointment so quickly because it was a cancellation.

Oh really? I’ll brace myself for a longer wait then! Thank you

We were told a 41 week waiting list but it's been 49 weeks already and we still don't have an appointment!

@eatdrinkandbemerry wow! How frustrating for you and your child. I used to work with SEN children but have been out of it for 5 years and it’s not been on my radar at all.

scary to think the wait is so long as SD is 12 already and apparently having a mom who worked with SEN children hasn’t done her any favours as I missed all the signs!

@Sunnydays41 it just sounds like such a drawn out process. Could you explain further about the ‘right to choose referrals’ please?

my daughter is struggling so much I want to do everything to advocate for her but no idea how to do this without a formal diagnosis and because at surface level she appears to cope very well at school!

So that's a process whereby GPs can refer to private providers if there is a long waiting list, but the private providers have to be accepting referrals via this process.

Have found a local one that are accepting them (though had to educate the GP on the process!). Currently waiting to hear whether the referrals have been accepted. Mind you, they still have a 6-9 month waiting list (though much better than 2-3 years!).

We were told that, as DD was doing well at school but suffering only at home as a result of masking, we would be low priority and should expect a wait of up to two years. DD is in year 6 and we don’t really have that time, as the transition to high school is going to be a nightmare without support.

we’ve decided to go private and have started the process - DD has has the initial screening which I guess was like a triage - she talked with someone for 90 minutes while they did an information gathering from me. My understanding is that next they will speak to school (have already warned them that her teachers don’t see it - she masks at school, they seem prepared for this). They may or may not observe her at school - they think she would be too aware of being observed.

i understand that there needs to be people from different disciplines who look at the whole picture to decide if she meets the diagnosis criteria.

it’s all a bit tricky though, isn’t it? Things seem to take quite a long time, and I’m not 100% sure exactly what’s happening always….

FrenchFancie support in schools is based on needs rather than diagnosis, so the schools still have a duty to provide support and make adjustments even without a diagnosis.

@FrenchFancie it’s so difficult when they mask so well at school isn’t it? I highly doubt school will have noticed anything, especially her huge city secondary school. She is experiencing some gender dysphoria they are aware of but otherwise she copes at surface level well and saves it all up for after school.

I wish we could afford to go private but not an option for us having looked at prices.