To ask if you have a child with autism or on the pathway, How long are assessment wait times in your area?

[Crispymandm]

Just curious to see how long nhs assessment takes in your area after referral , and if your child was offered support after diagnosis?

Yes if you moved to a different area

Even without an EHCP the school would probably need to make adjustments. My son doesn’t have an EHCP but there are several things the school has put in place that have helped him (ear defenders, access to a quiet space, pass to leave lessons when he feels overwhelmed). Also out of school activities have also been more willing to make adjustments since diagnosis.

@Sheepareawesome I googled clinics that do private Asd diagnosis in my area, there was one that specialised in Asd in girls which was the biggest win for me, double checked their assessment met Nice guidelines and then made contact.

I had an initial consultation (£100) with a psychologist over Teams, I had prepared for it so only needed 30 mins of my hour before she decided that there was more than enough evidence to warrant a diagnosis. We spent the rest of the time talking about possible techniques that I could try to ease things on the run up to the full consultation.

I was then sent a familiarisation pack and video for DD to watch introducing the people she would meet and a tour of the clinic. I completed several questionnaires online. I have a 2 hour interview next week and then the week after DD will do the ADOS and some other cognitive tests that they offer as part of the package at the clinic. We then get a 30 min virtual feedback session, and then the report comes through 20 days after the assessment.

@karmakameleon thank you. School have already implemented some strategies which seems to be helping. Child is not likely to qualify for much more. I suppose for us the diagnosis would be validation more than practical help as we've been plodding on OK for so long. So I'm delicately trying to balance the impact of a diagnosis against future implications for them.

The list is 2 1/2 years round me. I went to my Mp in the end as Dd would have been at university before she was assessed. She contacted the assessment place, and Dd was seen 6 weeks later.

Not much support in place. Still haven’t had the report although the assessment was 5 months ago. Invited to an anxiety workshop, but when l tried to register l was told it was full despite phoning on the day of the letter arriving🤷🏼‍♀️

I'm surprised at all these comments... some people saying 5+ years?!

My son was diagnosed by Age 2...

First seen at 20 months. Diagnosed at 2

Started one referral at age 3-4 which was lost, chased, lost, buried in peat, recycled as fire lighters, etc. Gave it up during the shift to primary school as they said they could handle him, but it turned out they were only referring to the fact that he wasn’t violent and didn’t cause them trouble. They must have basically sat him at the back and forgot about him for 3 years as he learned nothing. Thank goodness for lockdown as I was able to home educate and did more with him in a few weeks than they’d managed in a few years. They have followed through since to give credit where deserved. Moral of this story is don’t trust early years mainstream teachers with anything or anyone slightly off piste. The profession does actually acknowledge in their own training that parental support is rather more important than schooling, when it suits them to do so, and anyone slightly out of mainstream alignment needs that support.

We started another assessment process just after the lockdowns: he has got through enough of the system that he is treated as though we’ve got a diagnosis, but he is still somewhere in that system and I’m not sure exactly where.

It’s usually quicker for under 5s my dd was diagnosed very quick as she was 2 when first put on the pathway. After 5 is usually when the wait is longer my son was 6 and they said 3 years.

2 years roughly til start of assessment for ASD.
5 years for ADHD.

We have started right to choose process ( Google it there is a good website) and it will be approx 6 mths.

5 years from start to finish. Referred by school nurse at the end of year 1. one year waiting to see a paediatrician, one year faffing around before the paediatrician referred to the neurodevelopmental team, then 3 years on the neurodevelopmental team's waiting list.
Appointment finally given in the August after finishing primary school. I chased the outcome of that in October and received her diagnosis when I met the neurodevelopmental team and they handed me her assessment report, gave me 10 minutes to read it and then sent me on my way with a dvd and a booklet. That was it.
I was left with a child who struggled so much with mainstream school ( who claimed she was 'fine')she developed PTSD on top of depression and anxiety and became suicidal.
Don't get me started on CAMHS and their lack of care for autistic young people!
Or the battle for a Statement and appropriate school place -and the £18,000 I spent getting her there!

We've been waiting for almost 2 years, which was the waiting time when we were referred but have been informed it could be another 2 years. My DD is quite bright but struggles to learn in the classroom so I spoke to the school and requested an EHCP myself. The SENCO has been great, she completed some assessments on my DD to support the application and suggested required interventions, so I'm hoping it will be accepted as I'm worried about the transition to high school. It's really difficult, there is such limited support available :(

Don’t underestimate the value of validation.

The best advice I received was to have him referred and see how we felt when the referral came through. We could always withdraw ourselves from the process at that point but given the waiting times, it was better to get him on the list.

School referral sent in November, initial assessment in May, MDT (ADOS) and diagnosis the January after. So the whole process took just over a year.

18 months in my area we are 6 months in although my child will hopefully get a place at a specialist school in September and they do everything there so no wait. Iv been told after diagnosis there’s not much else apart from some workshops but I have to say there’s quite a lot of support available where we are (you do need to do some digging) my dc is currently in mainstream nursery and thriving (his school have been brilliant) but the gap between him and his peers is huge hence the move to a specialist school.

It's quicker for that age group in my experience @moreafayenow (though I'm not in the uk). I was told that they prioritise the younger age group by the manager of the clinic my DS was referred to. He was older (7) and this was to explain why things were taking so long.

The clinic had a formal complaints process and we did use that to complain about the waiting time. The letter came back to say our complaint was upheld, but realistically that changed nothing. It was a waste of time. We ended up going private.

Oh, missed the 2nd bit, school were already supportive with addional interventions for social skills but an onward referral was done for sleep issues.

3mo end-to-end for an adult diagnosis. Private, The Autism Service, £1750, sent in original reports from childhood, 1 hour in-person consultation, 3 hour google-meet collecting data, 2 hour google-meet findings, written report and suggestions.

We were moving from Southwark to Brighton and Hove and were advised to stay on the Southwark waiting list as waiting times we're at least a year in B and H. Possibly longer as it was just post pandemic. In the end we waiting for about 5months and DD who was 4 at the time for her ASC diagnosis just before we moved. I appreciate we were lucky in that respects. Especially when I listen to experiences of friends who have had to go private.

Thanks so much for all the replies, it’s very interesting to see how it varies in different areas.
I keep reading how early intervention is best but with such long wait times for diagnosis how is this meant to be done?
For those who have mentioned or done the nhs right to choose, how is this done? My son is nearly 2 and scored 17 on the M-CHAT-R test.

Friend's son was referred to CAMHS at 10. He'll be 16 in a few months and still hasn't got a fucking diagnosis. He's got MH issues as well (dreadful anxiety, especially social anxiety, and she thinks he has PTSD too).

She's tearing her hair out, she hasn't been able to get him to school since the first term of secondary and almost never leaves the house.

I'm helping her to draft a complaint.

My dd was referred at age 7 she's just turned 11 and we are still waiting, we have absolutely no support.

I've got one DC who's been on the pathway for several months now, we've been told the wait for assessment is at least 2 years.
My other DC was diagnosed about 7 years ago and the wait was about 18 months for an ADOS back then.
There's absolutely no help or support here before or after diagnosis. CAMHS won't even accept a referral without the child being suicidal. Schools offer nothing without an ehcp.

Four years. Adhd 2 years.
Support zero

About 4 months (north east) Diagnosis was something else but they were central in getting the EHCP. Much better than the senco.

This thread is depressing

I'm still fighting for a referral. DS was 4.5 and about to start school when I first realised he might have ASD and/or ADHD. Now, 1.5 years later, he's in Y1, about to turn 6, and I am still struggling to get the SENDCO to take me seriously. Referrals have to be through school in my area. DS masks in school. I am paying for private OT (assessment and ongoing sessions) and the OT is supposed to be going into school to meet the SENDCO and observe DS together, I have been waiting for this for a while but hopefully when it happens it will be another small step in the right direction. SENDCO needs to agree to put DS on the SEND register because we will need all the associated paperwork for a referral.

According to the information I can find, waiting times after referral will depend what year he's in by then:

^Priority one:
These are pre-school children, years 5/6, those at risk of exclusion and safeguarding / looked after children.
The target wait to first assessment is 18 weeks.^

^Priority two:
All other children who fall outside of the priority one remit.
The longest wait is approx. 68 weeks, but this may change depending on demand and capacity.^

So if we can get a referral in Y2 (I'm not holding my breath) the current wait is about 16 months.