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.
Has anyone else experienced this?
Do things like this happen?
Can they backdate it?
I feel so let down.