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 it was well worth it for us, took a few months and cost a few thousand though I think you can get it for 1.5k.

It made a difference because school took it more seriously, family did, and it gave me permission to finally think of supporting an autistic child without that self doubt.
Without diagnosis school were of the opinion we sit had a quirky genius, and that I learned from the assessment was just an indication of how much effort to compensate had masked the signs. Now school take it much more seriously and I think if we had the same problems without diagnosis we would have a hard time of it.
School

my son initially started on the pathway when he was 5/6 but school got in my way saying he was fine. Changed school, new school head teacher said how is this child not diagnosed then Covid hit and we had zoom meeting for asd assessment and they finally saw what I was saying but said when he had a face to face assessment due to masking he wouldn’t of got diagnosed. Zero support since. To the point I’ve taken him out of school and home educated him. So from first raising my worries at 3 he was ten an half before he was diagnosed. So many departments in the northwest agreed there was something but kept saying it wasn’t their department. No 8 year old should stated they want to kill themself due to lack of support.

26 months when we joined the list round about June last year, but it should be shorter as a lot of work has been done to get him seen sooner due to the difficulties he's having - school refusal, massive anxiety about even being seen by his peers let alone interacting with them, police have been called out due to his violent meltdowns and so on.

Differs to where you are sent as well.

15 year old on camhs list. 2 and half year wait.

9 year old took 7 years. Community paediatrician

6 year old 18 months community paediatrician

3 year old was referred in July 2022. Diagnosed in august 2022. Referral was to child complex care team. So 5 weeks

All but my teen have been referred as a toddler. 9 year old always just didn't meet criteria till recently.

20 months and dd hasn't even been screened to decide if she can join the "pathway" which apparently is another 2-3 year wait before the actual assessment. That could put her at almost 5 years between referral and diagnosis.

Our GP was so reluctant to refer that she only referred for ADHD which has delayed things. We went private when dd's mental health nose dived (that didn't help get her nhs referral prioritised even when she put herself at significant risk) and the diagnosis was very clear. It hasn't come with any extra support though, we just have a name for the meltdowns now and feel slightly less like we're failing as parents. I asked if it was worth staying on the nhs waiting list to be able to access support in the future and was told that "support" in our area comes in the form of a list of helpful websites and apps.

Around 5 years so far and still waiting. We have had 2 assessments and have 2 more bits to go. They say average waiting times are only 3 years, I would love to know how. It really is ridiculous. Health visitor and preschool were waiting and seeing. Then, the start of primary we needed to wait to see if interventions helped. After that the referral was made in year 2. I never thought we would get to high school still in this situation but here we are.

We waited more than 4 years. Were told waiting list was 2 years. From when my son was 3.5. Then suddenly end of last year got email asking if we still needed assessment and would we agree to go to place out of our area as they’ve outsourced it there. We agreed and finally had it done. After appointment there was another 2 months wait for written report.

After over 2 years we gave up and with the help of both sets of grandparents went private. Its a broken system sadly.

3 years in my area, but it's very, very difficult to get a referral. I gave up and went private, and felt better treated as a parent there too.

My daughter (who was already seeing CAMHS) was referred on by CAMHS in August 2022.

We’re now just waiting for the date for our final, in person appointment.

They are trying to push her through a bit as she’ll be 18 in a few weeks (she’s got until she is 18.5) - otherwise she’ll be transferred to adult services and we’ll have to start again.

my daughter was referred to asd via ep does this mean I can still use the right to choose via nhs at I want to use NAS Lorna wing for my daughters assessment .

3 years son was diagnosed in April of last year took longer as the practitioner became unwell and dropped his case and we started from scratch with someone new. Was very tough 😬

My eldest son (7) was diagnosed 4 years ago, only took about 9 months from referral being accepted to diagnosis.
My middle son (almost 5) was referred when he was 18 months and got his diagnosis shortly after he turned 4. Covid backlog of course.
Waiting time in my area is still around 2-3 years according to friends.

Support has been minimal. My eldest son has a 1-2-1 support for learning worker at school but he also has drug resistant epilepsy and other health needs, I don't think he'd have her if it was based on his autism alone. My middle son is starting school this year and I don't see him getting the same level of support that his brother has had. He hasn't even had a follow up appointment since his diagnosis. He will get enhanced transitions for school though that he wouldn't without a diagnosis. I recieve child disability payment (we're in Scotland) for them both too and as much as it is supposed to be needs based and not diagnosis based, a diagnosis and the evidence and documentation that came from that increased my middle sons rate. So I guess its been helpful in that respect.

Yorkshire here, and my son (5) is waiting for an ASD assessment. First saw a health visitor to get the ball rolling this time last year. He saw a paediatrician in the autumn who supported the assessment and did the referral. I rang to check the referral was in the system just after Christmas and found out there was a year long wait just to triage the referral and pass it to CAMHS. And then join another waiting list 😡

We’re now going for a private assessment (funded by the NHS right to choose pathway) and he will be assessed this summer. Strongly recommend that to anyone in the same boat, it was really easy and our GP was very supportive.

I’m anticipating no extra support post diagnosis, but I will then start pushing for an EHCP.

Our teenager's referall has just gone in ,school (smaller specialist ) and us and gp all and our teen all agree high functioning austism .I have been told once accepted it is 10mths .Been trying for 5yrs to get referall accepted ,they would not accept off gp or us .Mainstream saw nothing wrong as they are classic masker .

Round here they tell you to expect a 4 year wait, but I work with families who have been waiting longer than that. We went private. We have had excellent support from school (which I realise makes us very fortunate!) but any post diagnosis support for Autism or ADHD locally comes from third sector organisations and parents have to know where to look for it.

If you think he needs an ehcp start the process now as you don’t need a diagnosis. You may very well get turned down by your la saying child doesn’t have a diagnosis but that’s isn’t a legal reason that stands at appeal. I did the same as you are planning back when my child was younger and waited till we got the diagnosis before we applied for the ehcp, then we got turned down on the basis that it was a “new diagnosis” and “ they wanted to give time to see if things magically improved now he had a diagnosis”. I appealed but of course this all takes time and by the time we got the ehcp support in place in mainstream it was another year post diagnosis, and that was in the days when our la was meeting the ehcp statutory deadlines, now they are not so would be even longer. Also Tribunal wait was 12 weeks when I appealed now it is 12 months. At least if you apply now and are refused you are working your way through system already

My dd has been waiting just over a year. I was diagnosed 5 years ago. I waited just over 2 years.

That sounds really frustrating! As if the diagnosis will automatically improve things 🤦‍♀️ I’m talking to the SENCO this week about it, school doesn’t think he needs one. He is academically coping well at the moment, but he’s in reception with lots of TA support and play based learning. They’ve only had a few major incidents with him this year, most of the time he’s coping. I think the wheels will start to fall off in Year 1-2 if I’m being honest. I think I will have a stronger argument if he has a diagnosis. I suspect because he’s high functioning I will have a battle on my hands! Socially and emotionally he isn’t in line with his peers, but academically he’s exceeding.

In my head I want an EHCP in place for secondary school (I teach in a secondary school and I know the system he’s going into is nowhere near as supportive as his excellent primary school who are fabulous), so I’m giving myself years to argue the toss and deal with appeals!

We've just been referred to panel and told it will be at least 2 years. Referral back to physio for dyspraxia assessment has been quick though.

DC is in year 4. We're going to pay for a private assessment so we have it in place before secondary application times. All has been somewhat complicated and delayed by covid and a couple of other factors, the first referral was done by school in year 1 about 2 weeks before covid hit.

He sounds really like my son, although we didn’t start to peruse a diagnosis until the wheels came off in year one, he copied fine in reception and nursery then year one onwards was awful. Took us till half way through year three to get the ehcp in place and by then Ds was having big meltdowns in school and being excluded. Things still didn’t work out when we got the ehcp as things had gone too far and the school wasn’t great tbh, so ended up moving to a specialist unit in year 4

For those of you that have done the 'right to choose' can you explain how it works? How you go about it?
I've done a quick Google and it all seems to be if your GP has made the referral, is it still the same process if you were referred by CAMHS?
It's probably really simple but I'm just confusing myself.
Thanks.

It was 3.5 years here in 2021. We went private which brought it down to 6 months.

Oh and yes, the diagnosis was a great help to gaining support at school.