Starting school - boy with mild ASD any tips and support

[gfy678686]

Posting here for traffic.

DS is starting school in September and I suspect he has a mild form of ASD. It runs in my family and many of the 'issues' he has are very similar. So he needs routines, has zero emotional intelligence, gets overwrought and can hit, has a 'disorganised' mind - is interested in being with other kids but often has conflicts etc. It's mild enough that I assume it won't get documented but my concern is that he will just get labelled a 'naughty boy'.

I didn't start school till I was 7 so had much better control over things by then. Plus, in typical girl fashion, I was all about mimicry so even though I had massive meltdowns at home - when at school, I was pretty good at masking it and was never physical etc. DS is similar but is obviously still younger and I am getting a bit anxious about how he'll manage. He currently goes to a small nursery and it's ok ish.....but not always smooth sailing.

Does anyone have any tips, ideas that have helped you when your little ones started school?

The point about demands increasing in year 3 is interesting. Another stress point seems to be transition from year 6 to year 7. That's what I'm thinking about a lot at the moment. It's a big challenge round here as so many of the schools have admissions tests of one kind or another.

I can imagine secondary school can be hard. I often think back to how I was as a kid.Exams were totally ok but I really wouldn't have faired well in say a grammar school. I can rise up to the challenge once but and maybe that's due to ASD, I am actually not competitive with other people so I wouldn't have been able to rise to the challenge week in, week out. Not in terms of intelligence but for example being neat....or polishing things off. But that doesn't mean I didn't do well at school and did go to all the top unis.So we aim to move somewhere with a good comp.

I don't know, I taught in a superselective grammar and we had a fair few kids on the spectrum, probably on the spectrum and that's before you got to the staff...it was competitive to get in, for sure, but once you got in, not so much. There was a nice collaborative vibe. DH, who would probably be diagnosed now, has always done very well with the "ace the big test, do not much till the next one" approach. DD not like that at all.

I agree with the y3 comments but for us secondary school was a saving grace. So much more freedom. You're not stuck with a teacher you don't like and the friendship pool is so much bigger. We found that expectations were much higher too.
@gfy678686 Although we don't deal with ASD, I really believe most parents of SEN kids end up receiving exhausted kids at 3:30pm that need a familiar and expected activity. Primary school is very unpredictable, activities after lunch are very varied and will be exhausting for any child that needs to work double time to process what's going on. Here is what helped with our DD: max 1 after school activity in the week. We did the whole swimming, gymnastics, dance and drama thing and it was absolute torture. All her friends loved it and had play dates on top and I thought she would too but all she wanted was to go home and unwind.
Have a similar snack/activity each day. It was very comforting for DD to know she had something calming and familiar when she got home. For us it was a bowl of cereal and her fav TV show. Try to drown out the hummus and carrot mummy armies.
Decide your battles and pay accordingly. For example, we knew DD had to learn how to swim but normal swimming lessons were horrible, it was loud and she couldn't process the instructions. We decided we would pay extra for 1:1 lessons and then move her to normal lessons in the upper levels. The upper levels have tiny classes as parents stop taking their kids once they are 'proficient'.
Similar thing with drama. Local parents paid through the roof for the place with lamda and all sorts. We decided DD just wanted something fun and low stress. We paid a lot less for this but we decided it was a better place for her.

Even if your son doesn't end up being diagnosed, you will make a lot of mistakes along the way, like everyone does. Your son is so small and you're an amazing mum for thinking ahead, it's not an easy job and every child is different. Just remember you are doing your best and that's all you can do.

Just to add with the DLA- until the child is 5 they won't get a mobility rate. Also, yes it is all based on symptoms but they do expect some evidence. Same with EHC assessment request.

@ Phineyj yes, I think it really depends on the kid. I was never one of the super bright maths kids - so for me my ASD has damped my studying ability rather than augmented it. I am also quite 'fragile' things do go my way once and I would melt down and give up, I am very messy and struggle with finishing things on time. DS is the same. My ex, however, was the opposite and seemingly just kept going and going so for him a super select school was great. He was off the scale academically and it all came easily to him. But then he is the only person I know who wrote their PhDs in under two years and got it published etc, whereas it took me over four years and the stress around it was horendous.

@Nevermindthesquirrels thank you thats really reassuring to hear. I struggle juggling my kid's needs, his own wishes, and what everyone else does. Everyone around us does more activities than you think of. DS would also love to do them as he is super outgoing. Unfortunately, he just can't cope with them. So it's always such a juggling act between getting him to do what he wants i.e. what his friends are doing and managing it so he doesnt just meltdown at everything, unlike his friends.

We’ve found there has been a big leap with every school year so far, from Reception to Year 1 and the loss of a play based curriculum (DC1) found that hard, and then the leap from Year 1 to Year 2. Not looking forward to the leap to Year 3!

We don’t do after school activities- we assumed DC1 wouldn’t cope. There are only two days we could facilitate them at the moment and we have DC2 (toddler) in tow then. We do swimming and another activity on Saturdays and that works well.

We’ve gone to some trouble to find a small swim school with fantastic and (possibly unwittingly) very inclusive coaches who take everything at the child’s pace and focus on building confidence.

do you find that your children dont want to do any extra activities or just cant cope doing them? DS seems to want to go but often cant actual handle them in practice - which I sometimes find hard to manage and navigate

@gfy678686 I think your DS is at the age where he needs his parent to act based on their knowledge. All kids, NT or SEN want to do all the stuff. Little kids have the biggest fear of missing out ever.
You know best that ultimately he won't be happy doing it so I wouldn't even try. On top of him having difficulties you have listed, the other problem is these parents are lying if they're saying their 3 year olds aren't exhausted by nursery and then activities all afternoon. Every 3 year old will be.
When he gets older, he will likely know what he doesn't like and tell you. I found it harder watching other kids being happy doing it, and my daughter not wanting to. I felt she was missing out and I should be doing more, finding better lessons, calmer environments etc. The reality is most kids in the country don't do this much. This is very much a 'nice' area problem.
I once went to pick my daughter up at her friends where she stayed for dinner. The tantrum that child was having. Turned out she had 2 clubs after school and a playdate! One club a week was plenty and it made DD appreciate it and look forward to it.

@Nevermindthesquirrels thank you. It's just hard when your kid wants to go and then get totally overwrought or just melts down in the middle of a football field. He is also an only - partly because of the way he is, I just dont think that I could cope with two, so he really seeks out other children but cant always manage it successfully.

I am very conscious that things may only get more complicated with schools and him growing up

@Fheu4543 don't beat yourself up about it. Plenty of neuro typical kids get overwhelmed, it'll be trial and error to see what works for him.
You will learn over time what is a typical child behaviour and what is his difficulties, and whether to force him to stick with the activity or quit.
Most kids find a new activity tough because they're bad at it, and no one wants to suck. If however the activity is something that makes him super uncomfortable, he will never improve and never enjoy it- that's my theory anyway as that's what I noticed with DD.
Have a look at groups on Facebook for you local area. There are lots of support groups for parents with autism as well as parents of autistic children.
We ended up finding a really wonderful forest school for DD from a completely random Facebook group.

Ds was very sociable and outgoing but when he started school he was just exhausted by it. The day was much shorter than nuersery but much more exhausting, I thunk this is true for many kids but especially for him. Collapsing at home in front of CBBC was about all he was good for! (We sat together, I also read to him) An attempt at after-school club a couple of days a week was a disaster. So then he didn't join any after-school activities for a while, then after a year (when he was a little older, more used to school, had a diagnosis and had good support in place inschool!) he joined an after-school French class and a ballgames activity. I came along with him to support him. As he got older we mixed in trips to the park with friends, and much later (three years or so!) a supported place at after-school club once a week and during holidays. He also tried other activites over the years, school chess club in the evening, football and individual swimming lesson at weekends, which worked well for him later. (nb He didn't do more than a couple of these things at once!)

So can you take a wait and see approach? I wouldn't be in a hurry to plan after-school activities for him before he starts. See how much energy he has after school first.

@AmaryllisNightAndDay thank you very much for such a detailed response. it's really good to know how other kids managed. I am aware that 'school' is different but not always sure in what way. We both work FT - so will have to have some sort of after school care arrangement in place, but maybe we'll need to start looking into getting in a nanny or childminder rather than putting him into an after school club three days a week. So thank you, this is all very helpful.

@gfy678686 just want to add- most state schools don't have the insurance to keep under 5s in after school club so don't open it up to reception. Do check this before you even begin pondering it as an option in the first year.

@Nevermindthesquirrels thats good to know. lots of places seem to say Reception but you are right that they might also just mean over 5s. Either way, I just cant see DS being alright in one of those.

Relative to this thread

@picketingpanic excellent diagram!

Hahah particularly enjoying the people saying if you had acted when you first had concerns he would be diagnosed. We first expressed concerns when DD was 3. She's now almost 8 and the paediatrician has now said he is referring her- but guess what? There's a 2 year covid backlog. It's been 2 refused referrals, until it came from the SENCO, plus endless waiting in between. And I know what I am doing with schools and services. If your child is meeting targets and is not behaviourally disruptive it is incredibly difficult to get anyone to take it seriously. Both we and the school now just treat her as if she does have ASD but it is not easy to get a diagnosis, at all.

Anyway. On ASC- DD went to ASC and we actually found that a better option as it was within the school, run by the school- including some of the TAs and support staff. It was one less transition for her and that worked well. I think she would have preferred a nanny (but expensive!). A childminder wasn't an option I was keen on as the environment was a bit more intense with several kids in one house and she wouldn't be able to 'get away'- at asc she could go to the quiet corner to draw, there is a big playground etc. The schools near us in London all take reception age for ASC.

We've never done much extra curricula with her though. She does a language 2x a week after school (but in school) and one sport but that's loads for her and she needs downtime. 121 swimming worked well for a while. We stopped trying most things because she'd have a meltdown. That includes birthday parties which she still hates.

Lots of park while it's light and nothing wrong with cbeebies after school.

If you are in London, the Koru Kids website is worth a look.

Sorry to pull up an old thread OP, but just wondered how your son got on with school in the end? My son sounds very similar to yours and I'm worried about him starting school!