Referral - what happens next?

[uglycoyote1]

DD(2) has just had a referral through for Paediatrics. She scored highly in the social emotional questionnaire at her 27 month check up and her DF and I have had some concerns as well about possible autism.

My question is what is likely to happen at the referral? Will they want to observe her or will it be more questions for us? We don't really have any info other than a date and place, and now I'm feeling a bit worried!

[LightTripper]

Hi there! We were referred in at a similar age I think. We were seen around every 6 months, and got a diagnosis just before DD's 4th birthday (but we were told about a year before that she probably was autistic).

It does vary by area, so it may be worth phoning up the centre to ask how it works: I always found the admin/support staff quite helpful on this stuff. But in our case each meeting was around an hour, generally with at least 2 professionals (e.g. an SLT and a paediatric consultant) and often a trainee. One of the professionals would play with DD (bubbles, balls, tea party, pop up toys, etc.) and the other would talk to us and take history etc. It's worth taking notes of as many developmental comments/things you or others have noticed as possible.

When it came time for her actual assessment they took all the developmental history from these notes of previous conversations, and then the additional parts were that an SLT went to observe her at nursery, and they did the ADOS with her at the clinic (we were in the room with her, it was all very fun and casual, nothing stressful). We met up with them about a week later (without DD) and they gave us the draft diagnosis letter to comment on and a pack of materials about support etc.

As I say, it may look different in your area, but I think the route we experienced is fairly typical.

[LightTripper]

I meant to say, for the earlier meetings we were always in the same room with DD and all the professionals. At 2 this is OK. By 3 it starts to be a bit awkward: I think if she'd got any older and still in the system they would have started to do it in a separate room.

[uglycoyote1]

@LightTripper thank you so much for your quick reply!

That's a good idea about phoning and asking - I'll maybe do that before her appointment next week.

I have some typed up notes of things we've noticed and some photos and videos as well so I'll make sure to take them along.

Interesting about the timescale - I wasn't sure how long it might take for a diagnosis. DD isn't at nursery yet but will be by next year so they might want to observe her there as well?

Thanks again for your reply. Makes me feel a bit better knowing what to possibly expect!

[LightTripper]

It can be slow, but I think the key deadline is around school applications: if you think she may need an EHCP (and you won't know yet!) then it's helpful to get a diagnosis before the school applications deadline so you can work with Nursery to get that sorted out. It's probably a good question to ask them at the appointment (as there's a good chance they'll "wait and see" which i think is often sensible but leaves parents in a bit of a limbo!)