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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

HV has referred DS for autism assessment 6 months late

35 replies

radiantorange · 21/08/2023 13:34

Just putting this out there to get it off my chest… Summer 2020 I reached out to the health visitor to discuss some concerning behaviour from DS who had just turned 2. We had remote help via zoom on behavioural workshops but I did ask if he could be autistic. I was told it was too early to assess that.

Nursery did an observation on DS in August 2022 when he was just turned 4 as they felt he had an ASN or difficulty processing his emotions. While observing they put in place a few activities for all kids to talk more about feelings, express how they felt through emojis, book of the month was the colour monster etc… he responded well and by the end of the 4 weeks they didn't feel they needed to investigate further.

However we had a lot of challenging behaviour at home and I'd observed a lot of sensory issues, slow development of physical movement, not coping well in social situations and how he would punch his head and slap his eye a lot.

So I contacted the health visitor mid September 2022 and she did a home visit on 5th October – where DS was curled into a ball under the table the whole time… I went over a wee list I'd made and she said that there were quite a few things that indicated autism and asked if she should refer him for assessment and that he'd go on the waiting list – husband and I agreed and felt a sense of relief.

By the very end of March I'd not heard a thing and we were having some really difficult and challenging behaviour so I reached out to HV to ask if she could find out where we were on the waiting list and what the next steps were. Two days later she replied to say she'd been on holiday but she would email the service and get an update on the wait time and in the meantime look out some support services. But we heard nothing…

Then on 27th April I had an official letter – the first point of contact – from the Autism Diagnostic Team for our area that he was on their list and they were in stage 1 – research.

I messaged HV again in June due to regressed behaviour, refusing to get dressed, brush teeth, being aggressive and wetting himself a lot. I asked for the support info and she sent me a generic NHS web link and addressed me by the wrong name.

Anyway, today I called the Autism Diagnostic Team for info as we feel so in the dark. DS has started school and is struggling… they told me he wasn't referred to them till the 6th April. 6 months after we agreed to the referral.

I was speechless. It seems she hasn't referred him and maybe me getting in touch in March has reminded her!? Who knows. The woman on the phone was very good with me being a bit upset. She is really just an administrator and said she will speak to the team leaders to explain things and try and get it backdated. She did say there's a record of a home visit on the date I said but there is no detailed note. So they do know I requested a visit. I'm going to try calling back in a few weeks to see what the outcome of that is.

I've not spoken to the Health Visitor about it.

Has anyone else experienced this?
Do things like this happen?
Can they backdate it?

AIBU to feel like we've been let down?

OP posts:
Hankunamatata · 21/08/2023 13:53

I would try and not get too upset, everyone makes mistakes. Its a horrible process, the waiting and not knowing but if I'm being honest the actual diagnosis didn't really do anything for my dc.

I'd focus efforts into looking for support from charities, things you can put in place at home. I found the incredible years vourse and book so helpful. Talk to the school about iep and putting things in place to help dc cope, they don't need to be diagnosed as iep should be needs based

Hellodarknessmyoldpal · 21/08/2023 13:59

Sorry OP this must be very frustrating. Not sure what area you are in but if it's similar to where i am you don't really get any support once you've had the diagnosis anyway. It's just conformation of what you already know. You might be better to look at what support is on offer locally and join any ASN groups that are available. Ask for a meeting with school and agree strategies to help meet his sensory needs and any other areas that he is struggling. Best of luck to you.

Sunshineclouds11 · 21/08/2023 14:03

Agree a diagnosis doesn't change anything.

You can still get the help and support in place regardless.

Have you/school applied for an EHCP? Does he already have one?

Original poster
radiantorange · 21/08/2023 14:11

Thanks @Hankunamatata , @Hellodarknessmyoldpal , @Sunshineclouds11 – we are in Scotland and have no support network – most of the terms like IEP and EHCP I will have to google, I don't know what it is. I also have no idea where to look for info so I can try and figure out myself what's going on. I'd just like to know so I can do my own research and support him. When I ask for support I don't get anything. He's just started P1, we are 4 days in and they have been fantastic with him. He goes into the nurture room for a soft settle at 8.45am.

OP posts:
Hellodarknessmyoldpal · 21/08/2023 14:25

Ehpc is in England so don't worry about that one. IEP is an individual education plan. Basically where you meet with school staff and support teacher to identify targets for him and strategies to support him. That's great he's able to use the nurture room for a soft start. I think you can self reffer to an occupational therapist in Scotland and they may be able to support his sensory needs which can be written into his IEP.

You could try to look up local groups on Facebook/Instagram or ask school if they know of anything in your area.

anotheranotheranotheranother · 21/08/2023 14:40

Has anyone else experienced this?

Yes. Not by the Hv though but CAMHS themselves forgot to add DD to the list for the ADOS after several appointments concluding she needed one. It was over a year before I changed it up and she has slipped through the net.

Do things like this happen?

Yes, of course, people are only human. Mistakes happen.

Can they backdate it?

Backdate it how? I don't know what you mean by this.

AIBU to feel like we've been let down?

Well yes a bit, it's annoying but realistically it makes no difference to the overall outcome.

I'm sorry it happened but I would try to move on and not give it too much though now, you are going to need your energy elsewhere going forward

Nephthys21 · 21/08/2023 14:56

I think whether they'll backdate the referral will be down to individual CAMHS teams. The one I work in only backdates if the issue is down to an error on our end.

As PP have said a diagnosis won't necessarily change anything anyway, so its important to read up on supports available to you. Enquire.org.uk is useful for understanding your rights within Education in Scotland. And some local ASD services offer support while you're on the waiting list for assessment.

millsiem · 21/08/2023 14:57

I would get a meeting set up with the school - teacher, inclusion support, SfL teacher, depute or head depending on the size of the school.
The list of acronyms and terms are totally overwhelming and, to be honest, many vary between different local authorities.
Sounds like school have made a good start with the nurture room provision but they may also be able to push things along with Camhs as they will be able to give input on behaviour seen in class to support your referral. It's definitely a long process so it's good to get to know the staff who will be supporting you and your child as likely will be a fair amount of contact young forward.

elliejjtiny · 21/08/2023 15:25

I'm so sorry. It could well be that the HV took 6 months to gather evidence and send the report. When my ds2 went on the waiting list to be assessed for autism we had to wait 18 months for the school to do their own assessment (although to be fair, that was during covid) before they put in the referral. The referral forms that the HV would have to do are quite complex and she would have to send in evidence as well. The senco at my dc's school told me that a lot of referrals from schools and health visitors get rejected before the child gets out on the waiting list to be seen by a paediatrician, which is why they spend a long time doing it. Different counties in England have different ways of doing things though and I don't know the system in Scotland at all so sorry if I'm completely wrong about how it works where you live.

itsmyp4rty · 21/08/2023 15:59

This is not good enough is it really? If you hadn't chased it up he would never have got on the waiting list and you'd have been waiting forever. The HV didn't even have the guts to own up and admit her mistake to you - I'd have overlooked it if she did. I'd put in a complaint with PALS, she's not doing her job properly and that is letting children and parents - who want to know what's going on for their child - down.

It's BS that it might have taken her 6 months to collect or write up the information - unless of course she arranged and saw your son a number of times over that 6 months, which she hasn't- it's clear she forgot and then wrote it up in the week between getting your call and the date the autism team got it. It didn't take school 18 months to fill out ds's assessment form either, there was not much to it when we saw it, it would have taken an hour tops. 18 months is just taking the piss, your child wouldn't even be in the same class with the same teacher any more.

It's easy for other people to dismiss it as 'just a mistake' when it's not their child that's affected. The waiting list might be 2 years long as it is, having to wait another 6 months because of an incompetent HV who doesn't do her job and doesn't even care enough to get your name right isn't ok IMO.

TinselTarTars · 21/08/2023 16:04

How frustrating for you, if you haven't already, ask to be put on the cancellation list.
You'll be surprised at how many last minute appointments can become available. Good luck.

anotheranotheranotheranother · 21/08/2023 16:04

It's easy for other people to dismiss it as 'just a mistake' when it's not their child that's affected.

My child's assessment was delayed by over a year but yes it was 'just a mistake' and not being able to move on from it and focus forwards isn't at all helpful for OP.

BadBadDecisions · 21/08/2023 16:16

I'm in Scotland and my daughter was never. even offered assessment by CAMHS despite there being pretty obvious signs from age 8.

There's a three year waiting list for assessment. Honestly if you want fast answers it's best to go private, unless your health board is a LOT better than ours.

Original poster
radiantorange · 21/08/2023 16:19

Thanks everyone. This is all really helpful information - it’s good for me to be able to manage my expectations. I have calmed down about it now and it is what it is I guess. The HV had spoken to the nursery manager to find out what his behaviour was like in another setting already so she really did sit on it for a long time. It just feels odd that after I enquired that’s when we were out in the list.

today at pick-up they told me he coped well most of today but struggled and had to leave assembly early. We’re continuing with the nurture room every morning and I’ll start reading up and finding out what’s available for us and ask the school more questions. They’re getting to know him too so I think it’s to early for a plan.

OP posts:
Oblomov23 · 21/08/2023 16:55
  1. I would email HV complaining that Referral agreed in October wasn't done till April. 2)Chase Diagnostic Team again. Explain. Ask what the waiting times are. 3)Arrange an appointment with Senco. (Then follow it up with an email so that you've got evidence, a paper trail). List all the support you want. Most of it can be provided without a diagnosis.
nocoolnamesleft · 21/08/2023 17:00

The number of referrals that our hospital has proof we sent, that our tertiary hospital swore blind they never received when we chased them up, and insisted we had to send a new referral...I wouldn't discount the possibility that she did send the referral on time.

Kaffiene · 21/08/2023 17:05

Hi Op, a lot of the help and information given here doesn’t apply in Scotland. I would email the school as ask to speak to the Head Teacher or Depute (depending on the size of the school) about a child’s planning meeting. That would usually include the Educational Pyschologist, school nurse (who takes over from the health visitor at this point) the class teacher and someone from school management. This meeting would focus on getting support in place for your child. I wouldn’t wait for your CAHMs assessment. Depending on your area it could be 2-3 years.

OvertakenByLego · 21/08/2023 18:13

Enquire provide a similar service for Scotland that IPSEA and SOSSEN provide for England. If you haven’t already it is worth looking at their website.

Jellycatspyjamas · 21/08/2023 18:29

The school can provide quite a lot of support without a diagnosis, so focus on that because you’ll be on the waiting list for quite a while even if it does get backdated. Depending on your local authority they may work out a plan based on his observed needs in school and won’t necessarily involve Ed Psych at this stage (I’m in Scotland too and the system varies a lot between local authorities).

What I found most helpful at that stage (eg transition to primary school) was building a good relationship with the HT and class teacher, watching your sons transition into and out of school (eg is he showing challenging emotions or behaviours coming out of school suggesting he’s exhausted from masking). My DDs support needs changed constantly - sometimes a slow start helped, sometimes she needed somewhere quieter to sit when feeling overwhelmed, a sensory box helped at times. The most important thing is that the school are flexible in their approach, recognise he has ASN and adjust their approach to him. Some schools are much better at this than others.

I agree with getting a planning meeting in place - again depending on the school that may be with the HT, deputy HT, the person responsible for ASN (which may be the HT or deputy - we don’t have SENCO in Scotland), possibly the class teacher and/or nurture teacher. Bring any concerns you have and follow up by email any agreements made in the meeting. Ask for a copy of his education plan (Sometimes called a GIRFMe plan or IEP).

It may take a while to get things right for him and don’t be afraid to look for a more suitable school if your catchment one isn’t meeting his needs. As I say some are much better than others.

dearanon · 21/08/2023 18:29

You've got years to wait. Average wait in Scotland for autism assessment is 2-3 years.

You want an iep (Individual education plan) it's Scotlands version of ehcp,

Put a placing request into a specialist school you like if you don't believe mainstream is the right place for your child.

Kaffiene · 21/08/2023 20:02

An IEP is not the Scottish equivalent of an EHCP. An IEP has no legal standing. A CoOrdinated Support Plan (CSP) is the equivalent of an EHCP. From what the OP has said her child wouldn’t be eligible for a CSP as they don’t have a high level of input from multiple agencies.

Original poster
radiantorange · 21/08/2023 20:41

Thanks all. We are in Glasgow. I’m well aware of the long waiting time. That’s why I was so upset that we’re 6 months behind where we should be. Now it’ll take even longer. I’m going to follow up todays enquiry to find out if they’ve considered the delay to our referral. They said they cannot tell me how long we’ve got to wait but they did say it was a matter of weeks till we see a paediatric nurse - can’t remember what for exactly, a physical assessment maybe?

thanks for all the useful advice and to those telling me what does and doesn’t apply in scotland. I’ve got a bit of research to do then I can ask all the right questions at school. The deputy head teacher came to nursery in June to meet with us and the nursery manager to discuss his behaviour and she was so reassuring. He has been put into a composite P2/1 and I think that’s been really good for him as it’s a smaller class and his working group is 9, including him.

OP posts:
BadBadDecisions · 21/08/2023 21:05

If your wait is going to be very long, would that in fact give you time to start working towards a private assessment? I think we were about 4 grand for a combined ADHD/ASD assessment at a clinic in Glasgow.

chachaching · 21/08/2023 21:29

Does he have a child's plan yet?

I would ask the school to start one for him if not, and this will hopefully give him some extra support while you wait for him to be assessed.