Autism assessment referral waiting time

[mary365]

Hi Mums,

Health visitor has referred my son for autism assessment. He is 33 months old and doesn't talk. She referred us 5 months ago, but I haven't received an appointment yet. We live in Berkshire/Wokingham. Have you had a similar experience? Do you know how long usually takes for them to contact me? Should I follow up or is there any other way to ask for an appointment?
I have depression and we are very much struggling at the moment with not knowing what is causing his speech delay. It is getting very difficult for me to take care of my son because he doesn't understand or reply when I talk to him.
I'd really appreciate it if you could tell me how I can get an assessment appointment soon.

Thanks

5 months? I’ve been waiting 3 years for my sons diagnosis...

The NHS services are shockingly bad in this area. You could ask the HV which paediatrician she has referred to and then contact them to see when it’s likely to be.

A year and a half from referral to actually seeing someone.

Its 2 years from referral to diagnosis where I live. They won't tell us when in those 2 years the actual appointments/assessments are likely to happen. I'd ask the HV how best to chase.

Hi, we live in Wokingham and we've been waiting 2.5 years so far! DS was referred by paediatrician for assessment in December 2018.

I'm sorry to hear you're struggling. We attended the Wiggly Worms play sessions at Brambles Children's Centre which was a nice small ASC playgroup and the lady that ran it was lovely and very knowledgeable. Hopefully they'll start running again soon.

Have you seen a developmental/community paediatrician? I also self referred to SALT in Wokingham but that was early 2018, things may have changed since.

Does your son go to nursery/preschool?

I’m in Reading and in early March 2020 the waiting list was 2 years - that was before the pandemic so I imagine it’s even longer now

My DD is 43 months. She was referred in march 2020, we had a phone call with a paediatrician in the June 2020 but not alot after that. Finally got a face to face appointment with paediatrician in July 2021. They've said that theyre now going to refer for the multidisciplinary assessment and that'll be in around 6 months. So just under 2 years from her initial referal.

It really seems like a postcode lottery though, plus they're playing catchup from the pandemic. I hope you hear something soon.

Where I am at least, the preschool assessment pathway is slightly different then with older kids. You don't need to go through CAMHS which makes it a bit quicker.

We raised concerns and were referred to pediatrician in February 2020, first appointment with her was June, but they decided to wait until he was back in nursery (closed for lockdown). Saw her again in January 21, when she referred to an assessment team. There were a few appointments and observations from mid May-July, and I've got an appointment beginning of September to find out if a diagnosis will be given.

So about 18 months from first raising concerns, and will be 9 months from the referral to diagnostic assessment, to our upcoming 'outcome' appointment. It feels like a long time, but we've actually been quite lucky compared to a lot of people.

2-3 years in my area once accepted onto waiting list. Longer since covid I believe

Hi, many thanks for the information and apologies for the late reply. Things got really busy in the last month.
I’ve heard about the wiggly worms service but haven’t tried it yet. How can I self refer for SLT service? Should I call the hospital and request appointment?
Also I haven’t heard of developmental paediatrician. How can I see them?
Thanks again for your reply, it helped me most because of the local information.

There is some info in the link below about getting in touch with SALT yourself in Wokingham.

cypf.berkshirehealthcare.nhs.uk/our-services/children-and-young-peoples-integrated-therapies-cypit/speech-and-language-therapy/

There used to be drop in sessions (pre COVID) at the Children's Centres. I took DS to a couple of these.

directory.wokingham.gov.uk/kb5/wokingham/directory/service.page?id=Q3GxF_vq7Sg

I also did this with DS sites.reading.ac.uk/slt-clinic/speech-and-language-therapy-clinic/paediatric-clinic/

Reading university has a very good SALT degree course and you can go and get free help from the students, supervised obviously. You have to agree to be observed there was a one way mirror but this was also helpful. This is highly likely to be disrupted by COVID too.

In terms of getting a referral to a developmental paediatrician, we had ours via the GP, who referred on advice of NHS SALT.

If the HV has already referred you to CAMHS for Autism assessment and you've had the first bit of paperwork, call or email them to find out when you might hear [email protected]
0118 2070930

I’m in the North West. Son referred in March. We have the multi-disciplinary diagnosis meeting next week, so 6 months in total. We needed things sorted so he can have 1-1 support at nursery. I made a nuisance of myself and didn’t take no for an answer if appointments got cancelled due to staff sickness etc. Chased things up every week and if no response called again.

I work in the field of supporting children with LD’s and I know from experience of the system if you don’t push you’ll be left in the background.

You can always ring and ask where things are at, are there any cancellations etc

@mary365
Hi my experience was quite different I'm in Manchester and my hv referred us at 9 months he was referred to salt peads physio swallowing team hearing etc everything was relatively quick
He was seen by peads a few months later to discuss his case he was seen by all relative party's after this and then we would go back to peads which was June this year he was 2 in April he also had his bloods done a few months before this Until you've seen everyone peads won't really do much as there could be other things that could explain why there not where they should be. We haven't had official diagnoses yet but they've made it clear he's on the spectrum waiting on him starting nursery in September to get him evaluated by OT psychologists etc...
I actually did get PALS involved with the paediatrics as they gave me appointments cancelled them once they got involved he was seen within weeks. My hv has been incredible though I must add with chasing etc my son now has a special needs hv involved and is waiting to be seen by the social communication pathway diagnoses will be a while but once you have the correct support in place it's a massive help. Hope this helps and I was always told whoever screams the loudest gets listened to the most xx