Any experience please!

[Nearly2023]

Hi All,

My DS is on the pathway to ASD diagnosis, and I would love some advice and info on the process from anyone who’s been through it.

DS got referred over a year ago, and we have had an initial Speech and Language appointment, the Educational Psychologist assessed him in nursery, and now after a long wait we have a date for his first Community Paediatrician appointment.
What should I expect from the appointment?
What are the next stages after the appointment?

Any one who’s been through this I would love to hear your journey!

Different areas assess in different ways. My DS was assessed a few years ago now so the process may have changed.

The community paediatrician will probably want to take lots of history from you about all kinds of things so it will be helpful to make some notes. They may well ask things like what age did your DS crawl, walk, point, say his first word (if he is verbal).
It's also helpful to make notes before the appointment if there's anything you want to bring up in particular about your concerns or any questions. It's also helpful if you can give examples - like what triggers any meltdowns or any particular sensory issues you've noticed.

At some point, your DS may have an ADOS test (you can google it). It's a play-based assessment that's used to diagnose autism.
My DS has had two and he's enjoyed them both. You don't say how old your DS is. The type of assessment he has will depend on his age.
You may or may not be asked to leave the room. We could watch our DS's assessment through a two-way mirror.
The assessors get the DC to play some games, look at books, blow bubbles etc. They're trained to look for very specific reactions so it's not something you can (or indeed should) really prepare a DC for.

If your DC has already seen an EP and a Speech and Lang expert, the process may be mostly done though. Or it could be that he will now go onto the wait list for an ADOS.
Obviously the community paediatrician will go through everything with you on the day in terms of next steps.

In my area there's a 2 to 3 year wait for an autism diagnosis but it sounds like you're already well into the system.

Good luck!

Hi @Toomanyminifigs thank you so much, that’s really helpful.
Sorry in my excitement of the appointment date coming through I forgot to put his age, he’s just turned 4. The referral process started just over a year ago, so I’m hoping we are getting somewhere now.

@Toomanyminifigs’s post is excellent. One thing I would say is don’t try to prepare DS for the ADOS, it is helpful if the HCPs see his true responses to tasks without him being prepared for it.