Support early in primary school for HFA- what do you wish the school had done?

[Zone4flaneur]

DD1 is just finishing reception. She has been identified (by us, the school and community paediatrics) as having some social communication challenges with a query of HFA (she is meeting or exceeding all her targets with no LD).

Questionnaires have been done and sent back, plus we're waiting on an OT referral to look at some gross motor skills issues and paediatrics have said we'll talk again in 6 months.

In the meantime, school have set up a meeting for us with her new year 1 teacher and the SENCO to look at how we might start to get some support in place for her next year. She's happy enough at the moment but I am well aware that if it is HFA things are only going to get more complex for her.

What should we be asking school to support with? They have a social skills support group but I'm more concerned about the playground/unstructured environment stuff rather than the classroom, which she manages fine, with no specific sensory issues, although she does have a couple of odd physical mannerisms.

Also is there anything you did at home which helped? She hates groups and clubs and refuses to do the activity when other children are involved (hello, very expensive swimming lessons...) but can play ok on a 1-2-1 basis with a child she knows very well- her cousins etc, although is very easily led in those interactions. She needs a reasonable amount of downtime or gets very overwhelmed.

This is really new territory for us and we don't really have anyone to discuss it with as everyone keeps saying 'she seems fine' to us (apart from her teacher- who did do that at first but a couple of specific incidents helped him focus on the issue). Any advice would be fab. Even if she ends up 'not having' a diagnosis she is still socially anxious so does need some extra support.

We're at the same stage so our experiences may not be so useful as we don't have the benefit of later experience and seeing how things turned out. But given that DD had an earlier diagnosis (so we already knew in Reception she was autistic) some of the things we found helpful during this last Reception year might be worth thinking about:

• DD had a couple of terms of SLT. Her speech is actually great - this was more about practising sequencing stories (which is a useful basis for conversation skills), more generally practising conversations (e.g. asking back the same question you were just asked) and doing turn taking games with peers.

• DD had a play support worker one lunchtime a week for the first two terms. Her role was just to support/scaffold DD in letting other children into her play (so trying to show some games were more fun with two, other people have good ideas, etc.) That seemed to get DD to a point she was actively keen to include other kids (not all the time - she definitely needs more breaks from social than most!) so the support wasn't needed any more.

• We keep a diary some evenings where we talk about things that went well and things that were tricky. Sometimes we turn the tricky things into social stories, and talk about different things to try (e.g. if X was chasing you pretending to be a dragon and you didn't like it, what are the things you could try? You could ask them to stop, you could tell a teacher, you could ask if you could be a dragon too?)

• I really like the Molly Potter/Sarah Jennings books on friendship, feelings, etc. E.g. "How are you feeling today?" "What are you worrying about?" and "Will you be my friend?" DD loves them too, and they are a good base for conversations about things that might have happened at school. They are very logical and talk through different ways you can handle feelings or friendship problems.

• The "You Choose" books are also great for practising conversations (e.g. ask her what planet she would live on or which creature would be her pet, and then hint heavily until she asks you the same question, or a different question!)

• I think practising social interactions 1 to 1 is exactly the right way to build up to more complex settings. So either with you/other trusted adults, or familiar children her age or slightly older/younger even better. E.g. playing board games together, building Lego together, making a junk model of something together, or whatever. I guess we just look for opportunities to find slightly more social versions of those things (e.g. will another kid in the park like to do chalk drawings next to DD and talk to each other about them, or we go to Lego club at the local library which isn't very social , but DD loves Lego and I can encourage her to find a piece somebody else is looking for, or to ask somebody else if they can help her find a piece.... all baby steps but it all helps!)

• When DD didn't really like play dates we found they often went better if we set up an activity (e.g. making sticker pictures, or making a robot out of cardboard boxes, or a bicarb volcano, etc.) If we started with something like that it would often mean both kids' imaginations were firing on the same topic, which was a really good starting point. Similarly if we could see that DD needed some time out we might suggest something like colouring or playing in the sandpit that they could do in parallel, as that was less demanding on DD but without leaving the other child stranded.

• Making sure they have a lot of downtime is crucial I think. DD needs her TV time, or time to just lie on the floor listening to an audiobook, or pootle around the garden collecting bugs, or whatever she finds relaxing to do by herself. So all the stuff I'm talking about above isn't hours and hours each week.

• It's worth really thinking hard about the sensory stuff. DD also doesn't have obvious sensory issues (except maybe proprioception/interoception - which looks a lot like gross-motor problems). But e.g. she's never liked handdryers and her school have turned the dryers off in the toilet she uses. It's not a big deal (she can tolerate them these days) - but on the other hand, it is very easy for the school to do and if it leaves her a few "spoons" for things that actually matter why not? (If you don't already know spoon theory it's worth Googling!) Also worth checking things out from as close to her perspective as you can get. E.g. I crouched down in front of a hand dryer the other week and WOW it is loud down there (especially once you stick your hands in) and you can feel the pressure changes in your ears in a way you don't notice at adult height - not surprising many kids don't like them.

It sounds like she's doing really well so far (I think to get meeting or exceeding in all the EYFS ELGs she would have to be sufficiently social to do what's expected in class like e.g. talking to her classmates about things or working in a team under the teacher's guidance?) So I think a lot of this stuff is about getting our girls ready for the next social leap when they hit 7 or 8 and the girls start to clique up a bit...

honestly, I wish they had kept decent records following the plan do review format. it would have made the ehcp process so easier.

Thank you for taking the time to write that out @Lighttripper - that's brilliantly helpful. We have some of those books already but I will definitely look at the friendship one. The scaffolding her into play is the sort of thing I am looking for. I do worry about the play dates - we both work and so are not really around after school and it's not a very sociable school anyway, even though there are a lot of SAHP. So we haven't really done them, but I feel like we're letting her down.

Also very interesting about the gross motor/proprioception thing-- I had assumed she was probably hypermobile (I am, very) or dyspraxic like my brother. I will definitely mention that to the OT when we finally get our appointment.

I'll talk to the SENCO about plan do review as well.

I also feel bad because we initially raised concerns with her nursery 2 years ago but were fobbed off a bit. I wish I'd pushed harder then for a referral. We are where we are I suppose.

Thanks very much for all the input--yes it's the 7-8 jump I worry about but tbh there's been a bit of that already in her class.

DD is hypermobile too (as am I). TBH DD is like me in many ways. There are some things she struggles with that I didn't, but also some things I struggled with that she seems fine with. A lot is familiar! I think that's partly why we didn't spot anything different. Luckily we had a nanny who did. We both work, and DD doesn't have a huge appetite for playdates. I think one thing a week is plenty to be honest once they're at school - it's tiring for everybody otherwise. Even for neurotypical kids our school recommends only one after school playdate a week, or else they get tired. But if she interacts with another child in the playground or at Lego club I would count that (it's probably more tiring than a proper playdate with a child she knows, to be honest)