Is this normal regarding asd waiting list/assessment

[newtomeasd]

Dd 2.5 was referred literally a week ago by the HV to community paediatrics to go on the waiting list for an asd assessment, I’ve just had a phonecall off a nurse wanting to come and play with/observe dd at home, which is absolutely fine by me, but it’s also not what I expected ? Ds is autistic and was diagnosed 8 years who now granted but there was nothing like this, he just went to see the consultant at paediatrics once, I was given forms for nursery to fill in, then I had to go another day, answer lots of questions and he was diagnosed at the end of that appointment. I think I’m just shocked we’re already having someone come out to see us as I expected to be waiting a very long time before we saw anyone.
I did ask the nurse what will happen now and she said once this has been done, she will feed back to paediatrics and then I’ll be sent an appointment to go and see them, and they will then make a plan with me.

Any idea what this plan may be?!

Just to add I’m a little annoyed if I’m honest, dd has just finished a 6 week play session with a pre speech and language play group, they’ve observed she is delayed with her speech but have decided to discharge her rather than refer on to SLT. It doesn’t make sense to me as she still isn’t linking two words but they’ve decided that doesn’t matter I guess ? I honestly think it’s all down to cuts, we all know how much in demand the waiting lists are these days and I think this is them not referring any child but the children with severe cases of sen on.

Bump

This will be area dependent but I can tell you how it works here. We have something called ‘My Plan’ and ‘My Plan+’ so only children who have been through several cycles of the my plan and ultimately are put onto a my plan+ are accepted onto the waiting list. A nurse or health visitor usually comes out every 6-8 weeks to review the plan/outcomes etc. We have been on the waiting list (and my plan) for around 2.5 years now and likely have another 1.5 years to go. When Dd starts school or another setting they would take over the reviews. (If this works in the same way) sorry can’t be more helpful.

Thanks for the information. But that sounds awful for you guys ! Very drawn out and I guess dependent on how the child is getting on? But to me that makes no sense because if you’re autistic, you deserve to be assessed

@newtomeasd i know, think it’s just so it looks like they’re doing something instead of just sticking people on a waiting list for 4+ years. Not so bad for us as the nurse handed the my plan over to me about a year ago as there were too many new referrals coming through. Now I do it myself and while it’s extra admin it means I can set our own outcomes and we’re doing ok. Just insane waiting lists, have to keep checking every now and then we are still on it because you just don’t hear anything! Look into right to choose if you feel you aren’t getting anywhere. Think a GP can refer, again not sure how it works in your area.

The waiting lists are so long around here now with everyone thinking their child has Autism that there is a waiting list of about 10 months just to get on the actual waiting list. Basically they need to filter out those who almost certainly meet the criteria and reject the ones that may or may not (at that particular time)

This sounds like a really efficient way to do it. The nurse will be seeing if there is enough evidence to proceed for a full ASD assessment or whether it’s more of a global developmental delay (or a range of other things).

it’s not unusual for speech and language to discharge if the needs are felt to be social communication related. Ime most SALT services offer intervention if a child has a speech sound production/ language disorder or eating difficulties.
for a child of your dc age, direct 1:1 intervention isn’t very effective as attention and listening skills needs to be present for them to engage. Short (2-3 minutes a few times a day) in small groups like they do nurseries are more effective.

My DS is 2.5 years on the waiting list for a first appointment and no movement in sight.

We had a visit from a "community nursery nurse" when DS missed his 2 year speech milestones. This sounds like a similar thing. Ours was a long time ago while the HV service was slightly better funded. She said her visit gave them an opportunity to see DC at his best in a home environment. I think it was a kind of triage.

Getting SaLT is a battle. If I had my time over I would have looked into private SaLT as DS didn't quite hit the threshold for NHS intervention. At the time I think I believed that the fact they didn't offer intervention meant it wasn't needed, whereas now I think it was more about budget cuts and he would have benefitted from it.