DH worried about “the label”

[Rhayader]

DS (8) has always been kind of quirky, he’s very intelligent (scored an FSIQ of 150 on the COGAT that he took at school while we were abroad). He’s always struggled socially but has managed to make a few friends, usually 1 in each place we’ve been.

He majorly struggles with sensory processing and yesterday I took him for a handwriting assessment with an OT because he’s been homeschooled for this half term before starting school again in September when they have a place. He has been quite difficult to motivate but I didn’t think it was too unusual….

But filling out the questionnaire at the OT office made me reflect on his behaviour and I realised just how unusual it is. He was bouncing around the room, chewing on his clothes constantly, making strange noises repeatedly, doing the assessments in his “own way” etc (he won’t high five, insists on bumping your hand with his head) and it got me thinking that the OT might suggest some further testing with someone else. He also really struggles to sleep and is underweight because he doesn’t like eating.

I spoke to DH about potential further testing and he said he doesn’t want DS having a label of ADHD or autism as he gets along ok and he doesn’t want him to use it at a crutch in his life and an excuse for not “being better”. I sort of understand this (although I think we should get him assessed). Both of us are a little bit neurodivergent and have gone on to have successful careers without any diagnosis. I would like to know what the benefits are to a diagnosis - I doubt we would ever get an EHCP for him.

If you have concerns I would definitely persue a diagnosis. It's not a label but a way for your dc to better understand himself and for those that support him to also.

It’s a diagnosis, not a label.

Would DS think the same if DS needed an assessment for asthma?

ADHD, ASD or something else, it sounds like DS needs more support.

A diagnosis is important for understanding yourself and others understanding you. With ADHD, if medication is tried, a diagnosis is required for that. The majority of support, including an EHCP, is based on needs, but a minority of support requires diagnosis.

From your post, I wouldn’t rule out an EHCP. Have you spoken to the school’s SENCO about support?

You can’t be a little bit neurodivergent. Someone is either neurodivergent or they are not.

He’s not currently at school as we’ve just moved internationally. The council wanted him to go to a different school while we waited for a space in September at the school where his sisters go but that felt like too much disruption.

I asked his school in the US about whether we should seek an assessment but they said not to bother as he’s doing okay academically but they did have issues with him wandering off a lot when he found whatever they were doing boring. He also struggles to understand personal space which they were trying to work on with him.

I’ve mentioned the sensory needs to the senco but only in passing as he hasn’t started there yet. But I did say he was going to have an assessment for handwriting and sensory needs and they asked for me to forward the report onto them.

The school have previously given me the impression that EHCPs are for kids who require an additional TA giving 1-2-1 in lessons which I don’t think he does. But he could massively benefit from some additional support.

It is a good idea to speak to the SENCO properly in advance of starting so DS is supported from the start.

Do you already have a place confirmed for September?

EHCPs aren’t only for those who need full-time 1:1. From your posts DS needs SALT and OT support. He needs support with social interaction and social communication. Although if DS has significant sensory needs, wanders off, bounces around, struggles with personal space and struggles to complete tasks as requested he may need 1:1 at least some of the time.

DS also needs support with sleep and eating. You should speak to the GP about this and get the ball rolling with referrals.

I would ask to meet with senco just to make sure they are aware of his needs before he starts. In September they can refer to the necessary places but if you give them a heads up, the ball will get rolling at least. In our experience 8+ is when things became trickier at school; becoming more aware of differences, puberty starting. It sounds like you are already having talks with school. But you should definitely be welcoming assessment etc as this will enable him to gain the best support.

Thanks both, I think I’ve been a bit in denial about it to be honest.

Yes we have a confirmed space for September and it’s a school that he previously attended, so there is some continuity there. He wasn’t previously flagged as having any SEN but he was much younger. He’s always been really ahead academically and I wonder if that’s helped him hide a bit.

Grrr, I hate the "l' word (label). My elderly mum is prone to use it. Not coincidentally, she also put her head in the sand about my sibling's additional needs and therefore sibling really struggled.

A diagnosis is not a label! And ignoring needs doesn't make them go away.

When my DH read through all the forms I filled in for our daughter, he had a light bulb moment: oh, I tick a lot of the same boxes!

Yes I had noticed...

I had the exact same moment filling in the form… which I did send a photo of to DH. Maybe he just needs a bit more time to come to terms with it - when we get the report back from the OT that will help I think.