HV has referred DS for autism assessment 6 months late

[radiantorange]

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?

This isn’t really true. Not in England. The referral form does not take that long and you do not need to send evidence with it.

Ds had a meltdown at school in October 2019. The senco called us in for a meeting to review his needs in Feb 2020 and agreed that the school needed to assess him to see if he met the criteria for referral for an asd assessment. Ds goes on the waiting list to be observed by school. Ds gets to the top of that waiting list in January 2021. We get a phone call from the school autism specialist who says he has reached the top of the waiting list and we can call her for support but she can't start the assessment until ds is back in school after lock down. In February 2021 ds attempts suicide. He gets seen by camhs who say it's obvious he is autistic but they can't diagnose him or offer any support so he is discharged after one appointment. In March 2021 ds goes back to school after lockdown and the school autism specialist starts her assessment. In July 2022 the forms, reports and evidence are sent off to the community paediatric team. In December 2022 we get a letter to say the community paediatric team have looked at the information from school and he has been accepted onto the waiting list to see a community paediatrician. We should receive an appointment letter in April 2024. By then he will be 16. I first raised concerns that he had sensory issues when he was 4.

Very upsetting Op .

But. The reality is you can begin to support and understand his needs each day and push for the school to work with you

I highly recommend bringing in an occupational therapist its such a helpful input. Go private if you can afford it

I’m sorry about the wait to see a specialist but in the meantime I would highly recommend that you check out the National Autistic Society and if you can get yourself enrolled on an Earlybird course. You will need to self fund but the course should not be too expensive.

This link is for people wanting to train to deliver the programme but it does describe what the course is about and contains a link for parents wanting to find out where their nearest course will be.

https://www.autism.org.uk/what-we-do/professional-development/training-and-conferences/earlybird/earlybird#:~:text=Through%20the%20EarlyBird%20programme%2C%20parents,range%20of%20settings%20and%20situations

as others have said even with a diagnosis, state provided support is unfortunately usually pretty limited but once you have some techniques at your disposal to help manage some behaviours, hopefully things will feel a lot less daunting.

I lodged a formal complaint with the nursing council about my former HV as she was so disorganised.

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?

If it’s community paediatrics they do much more than a physical assessment. They have time to meet and observe your child and will take a full history for you. They’ll make referrals to SALT, OT, and any other disciplines they think will help. My DDs first appointment was 90 minutes and at one point she had 7 different specialisms involved in her care, and has had a further 3 involved through community paediatrics- they basically act as a coordination point for her health care needs.

One thing I’d advise is a referral to audiology - hearing problems are often overlooked in kids with additional support needs, because they get very used to masking and joining the dots around what they think is expected from them. My DD was found to have significant hearing loss, and has had a range of treatment and support which has helped hugely. She still obviously has her issues including ASD but getting her hearing attended to has made a huge difference to her communication, literacy and social skills.

Go to that appointment with a list of all your concerns about his development and they will help you figure out the different supports available.

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.

Yep the OP won’t be at the stage for a CSP at the moment, and it’s highly likely she may not need one unless her child needs specialist education provision and even then an Ed Psych assessment and IEP is often enough.

The SEN/ASN process in Scotland is very different from England, most support is provided in school without a diagnosis and without a CSP. The aim is only to have a plan secured through legal means if there is no other way to do it, in primary school particularly support is given based on the observed need of the child. You still need to argue your case, sometimes very strongly, but there doesn’t need to be a CSP in place to get additional, even quite specific support in school.

I am a primary teacher in Scotland. Agree with pp who said that you do not need a diagnosis or a care plan etc in place. If a need is identified, support will be put in place. This has clearly already started in the form of the nurture room first thing.

I personally wouldn't request meetings with all sorts of school staff until you see his needs are not being met. At the minute, it sounds like things are going well.

If at some point, you feel that things need to be tweaked a bit, go to the class teacher in the first instance. They usually liaise with the Support for Learning teacher - we do not have sencos here. The teacher should be receptive to your feelings and will work with you in order to move forward.

My own child has ASN and had a diagnosis from age 6. She never required an IEP as everything was already in place by the school already.

Hopefully he has a great Primary one!

We are in Helensburgh and although I completely understand your frustrations what I will say is my son (who is now in p4) would have had the exact same "journey" whether he had a diagnosis or not. The school will apply for funding for support on a needs basis not on a diagnosis basis. Try not to worry about it too much, although I know the not knowing is one of the worst things about it all.

Just a quick update. We are 3 weeks in to school and he’s still doing a soft start in the nurture room, 8.45am each morning and I’m able to drop him off at the door with a quick kiss now. By the time the bell rings at 9am he’s happy to go into his class and he’s in there all day! Except for assembly days - he gets overwhelmed so they take him out early and he gets a little bit of time in nurture. The nurture program starts fully in October and we’ve not been told yet if he’s on it… if so he’ll be in there every morning till lunchtime for the rest of the year and in his own class in the afternoons.

The only thing he is massively struggling with is after school club. We got allocated 1 day at the school linked club because they are full. Pity as he loves it! So I booked him a few days at a club further away but he will not go on the mini bus and it distresses him to the point of screaming and crying and curling up in a wee ball - so I scrapped it and am paying the price of slashing work hours to accommodate finishing at 2.45pm 4 days!

We are no further on with the autism assessment and I’m still very much in the dark but we are getting what we need from school. Currently we have a happy boy who goes in no problem and is taking part and doing homework 💛