Paediatrician appointment for autism next week, any advice or experiences please?

[Muteswan]

My DD's appointment to see the paediatrician to be assessed for potential autism is next week. She's 4 and I first raised concerns at her 2y health visitor review; health visitor told us to see GP, and GP made this referral which has taken 2 years to come through.

She's very verbal and doesn't have learning difficulties but has fairly extreme sensory seeking behaviour.

I know it's likely to vary from area to area but can anyone tell me what we might expect please? And is it always true that this appointment won't lead to a diagnosis, but instead to another appointment??

Thanks in advance.

Hopeful bump

The paed is likely to take a history, e.g. family history, developmental history. It can help to make some notes and a timeline of events/other professionals you have seen.

They may want to examine DD or have some tasks for her/observe her.

Often there is more than one appointment with the paed, but sometimes there isn’t. That is more likely if there has been involvement from other professionals already.

Oh thank you so much for your reply! Will definitely take a timeline. I'm so stressed about the whole thing and want to prep as much as possible.

Hopeful bump for the morning crowd, would love to hear more experiences please!

Any thoughts from lunchtime Mumsnetters?

I’m in the same situation with my 4 year old DS (appointment is in 4 weeks) and the first one is a phone appointment and haven’t been given much info! I guess it’s a case of make as many notes as possible of information and history but I do wonder how it will work without his involvement?!

Oh good luck @Corilee2806, hope yours goes well. Wish mine was a phone appointment!! I have just made SO many notes for mine, just hope we're listened to.

My experience is the same as @StrivingForSleep - paediatrician took a developmental history and then decided if a referral to the asd review panel was warranted. The developmental history involves remembering when the child hit various milestones so it might be worth looking back over any notes or videos you have to remind yourself eg. When did she walk, talk etc.

The dr may ask what behaviours you are ‘concerned’ about and I found it upsetting to talk about what my child struggles with in front of them but you need to be clear.

Best of luck.

The first appointment was really just taking a family history and childs history. A quick examination of the child. At the end of the appointment she said child would be put on the pathway for a diagnosis and told 18 month wait.
She did order so blood work for genetics testing. Still waiting on those results.

Thanks both! Seems like such a waste of time to make this extra loophole to jump through before we can get a diagnosis. The health visitor, GP, teacher and SENCO all though it worth an assessment so it feels annoying to have to see a paediatrician before being able to see someone who can actually diagnose...

Seeing a paed is, in many areas, part of the diagnostic assessment process. Paeds can be part of an MDT who diagnose. Taking a history is an important part of the assessment process.

I agree, it feels like stalling but that's only because there is likely a long wait the other side of this appointment. There will be children who have something else going on other than our in addition to being autistic and it's important to get the diagnosis right for everyone, obviously.

Not sure if you had the meeting already. Prepare some notes to make it an efficient meeting (your concerns, what other specialists have mentioned, eating, sleeping, social skills, speech development, etc.).

Is this the case everywhere? We were referred via GP to NHS developmental services.
We filled out huge developmental history forms and so did the school and were put on the waiting list. I was told 2 years (a year ago) but with my maths it’s going be at least 3 in total.
I’m now concerned that we will get to the front of this list and meet a paediatrician who decides not to pursue the assessment. Or if they do, we get put on another list.

We’re Airedale (Yorkshire) based if anyone has had experience there.

Thanks @transformationalyear, the appointment was last week, and when we got to the hospital they told us it had been cancelled as we'd been referred directly to autism! Which was good news but I'd have preferred to find out before forking out £90 for taxis and bundling presumed autistic DD and baby DD into car seats before 8am... I did however make loads of notes (7 pages!) so whenever we actually see the autism team I can show them exactly what my concerns were at this age.

@SpinningTops are you 100% sure you were added to the waiting list? I chased our referral after 18 months to find we had never been referred in the first place...

(I'm Yorkshire too but not Airedale)

Yes, definitely on the list - started at number 327 and after a year we we’re at 254 when I checked a few weeks ago.

What a frustrating trip for you. And we’ve definitely experienced being told we’re on a list to find out we’re not so I chased this one every step of the way.

Hello, My son recently turned 4. We raised concerns at the 2 year check as no eye contact, only 1 or 2 function words like go and no other sounds or babble. They said to just monitor. By 3 I'd gone back as it was obvious after starting preschool that he really struggles with social situations and emotional outbursts. He has his first paediatric appointment next month and I'm really worried. He's had physio and diagnosed with hyper mobility then discharged, still under occupational therapy but hitting his targets quite easily so I'm worried they will just dismiss us especially as he is very verbal now despite the late start and masks very well. As he's gotten older we've found the strategies to help him and his preschool are excellent so I worry this will mean he goes under the radar but not working in schools I know the support he gets now will not be replicated in schools which is what worries me. Sorry for the rambling! Hope everyone else's journeys go smoothly