Teacher suspects Autism in my 5 year old - advice please!

[Kln555]

Hi there. I have just had a teacher tell me she suspects autism in my son and would like me to pursue a diagnosis for him (5, reception). This was a big surprise and I actually struggled to come to terms with it as my own understanding of ASD (which was very limited, I now realise) had never led me to think it applied to him.
Their reasons are

1. sensory needs - he wriggles a lot during carpet time, and leans on & bear hugs & needs plysical contact with the other children a notable amount more than the others
2. He won't do what he's told - eg when the teacher calls him (& all the children) over he'll say "in a minute, I'm just going to finish this first"
3. He does a lot of calling out.

They've said that luckily he's not falling behind academically.

The calling out doesn't apply at home, the sensory need I do see now it's been mentioned, it's not constant but he does get in certain "moods" where he just wants to climb on me & wrestle me all the time. I had thought this was a normal boys thing?? Is it?? Maybe not. As for the not doing what he's told - he's not an angel but for both me & his dad (we live apart) he behaves pretty well - I've actually always thought of him as a relatively easy child behaviour-wise and been thankful for it. He's not perfect, but there's always been one way or another of getting round issues -
You can reason with him, or explain, and he responds well to clear & consistent boundaries or setting targets. If you watch him in a playground you wouldn't pick him out as an especially badly behaved child.
But clearly in school something is going wrong. The teachers say it could be that I'm masking it at home because I've unknowingly come up with effective strategies to deal with his autistic traits.

He is very similar to me, so it could be that 1)I havent recognised any peculiarities because they're 'normal' to me because I have them too
2)I have indeed been managing these peculiarities effectively because I have them too so my parenting strategies are informed by what I would have needed!!

In terms of my own observations of him and any concerns I've had.... He's a sensitive child, and quite emotional - if someone is mean to him or he gets told off he has a tendency to internalise it. His emotional resilience is low which worried me somewhat - A child in his class was hurting him (and others) regularly at one point at school and we were talking about what he could do. Even talking about standing his ground and telling the child "no" made him really upset. In the end the only strategy he could handle was to play near a teacher and go to them as soon as anything happened. He got very upset about it. Also when he plays with children who are very sure of themselves he believes anything they say if they say it with conviction - eg he came home from school really upset that he was "never allowed to change his mind ever again in his whole life" because one of the other children had told him this. Even though he has a good comprehension of the world and how it works he is easily swayed by someone forceful/something said with conviction.

He has always loved language and was an early talker / reader - he loves a figure of speech and a colourful phrase and if he hears a striking new word or phrase will find a way to incorporate it into his own chat within the hour. I love language too so don't hold back on my vocabulary with him so he does have quite an adult way of talking which sometimes sounds out of place on a 5 year old - apparently this is an ASD trait?
Also he loves making up his own words and similies which I thought was such fun and so creative (his made up words were SO apt! ) we did a lot of rhyming / made up word poems etc as part of our play at home - but - I've now found out making up words is also an ASD trait.

He's very happy in his own company which I'd put down to him being an only child and having a lot of time on his own when he was little (we were living somewhere very isolated) - he does play happily with other children and has good friends at school but I suppose if I'm looking for it I can see he's less social than some in his class - some children always play with other children but he will as often choose to play on his own as with others. He's a bit of a dreamer. Again, because all this is very much like me and it was never a problem in my life, I hadn't seen it as a potential flag of ASD.

He is REALLY into Thomas the Tank Engine which apparently quite a lot of ASD kids are-! -? (the teacher mentioned this to me) and will happily play Thomas in one way or another for a solid 80% of home play time unless I suggest other games/activities.

Overall, outside of the classroom, he's a happy, apparently thriving, laid back, communicative child. He is very bright and a highly skilled bargainer /negotiator who will run rings around you if you're not on your toes. But other than that.....i had thought he was doing great.

Does this sound familiar to any parents out there? If so, did your child have a diagnosis, was it helpful, was it ever unhelpful? Is it always the best thing to pursue a diagnosis? Do teachers ever get it wrong? If so what could be causing such a big disparity between what's going on at school and outside of it? Is my 'instinct' that he was fine worth paying attention to..... Or not?? Any suggestions for the sensory needs - the needing to touch/fiddle/wriggle a lot?

If your child had a diagnosis, at what stage did you tell them, and how? and what impact did it have on them? He's very suggestible.... I'm concerned that being told he "is" something will in itself impact his behaviour/sense of self.

Anything I can do from home to help with his behaviour in school?

Thanks all in advance.

Hi there,

My DD is in reception and got a diagnosis when she was just turning 4. We have talked to her a lot about he brain being different (to explain e.g. why she doesn't like to be in the school play when the other kids do, or why she wants to hide under the table when the fire alarms go off) but haven't actually told her she's autistic yet because I don't think the word would have any meaning for her, so it hasn't seemed urgent. We do plan to introduce her to the word soon, but like you I am a bit worried that she will pick up negatives from the label. Having said that, from everything I've read adults who were diagnosed later wish they were diagnosed earlier, and being told early at least gives our kids a lot of time to figure out how they feel about it and how it applies to them (I'm keen to definitely get it done well before teenage years, which are horror enough!)

As for whether your son is autistic, a lot of what you write is consistent with ASC but it also isn't shouting out ASC if you see what I mean? Obviously nobody diagnose over the internet (and neither is the teacher qualified to do so!): I guess in your shoes I would agree to pursue it (it will take a long time and you can always pull out later if you really feel it's not the right track), but not jump to any conclusions, and just see what the experts say.

DD is also big on negotiation. I would actually love her to say "just a minute" rather than ignore me - it's something we are working on!

She seems to behave well at school though she will sometimes refuse to join in with things (e.g. the Spanish class with a very outgoing teacher, and for a while she wouldn't go to dance either) and it took her longer to settle into the morning handover than the other kids (she doesn't really like transitions - she has great focus, and loves school once she is there, but gets very keyed up around arrival time and home time).

She is also an excellent negotiator and has quite a grown up vocabulary. Not recognising hierarchies in how you speak to and interact with different people can be an autistic thing (not necessarily a bad thing in my view!) Early on in Reception they mentioned that she didn't seem to realise general instructions applied to her too (they had to call her name specifically rather than just say "right, let's go and wash hands" or "playtime everybody") - but she seems to have got the hang of that now.

My DD also is doing well socially I think (she has nice friends, including a couple of best friends, and joins in with the other kids at the playground after school and when they are working in teams in class) but I can see that she does also spend more time than the other kids breaking off and doing things by herself, and would rather play by herself than play something she isn't interested in.

Like you many of DD's traits are things I recognise from myself too (like DD I'm a bit of perfectionist, quite anxious, often miss my name being called or somebody talking to me, can be quite verbose when I get on to a topic I love, have a succession of very intense interests, etc.), which is why I never saw autism in my daughter (our nanny flagged that she saw differences: a lack of pointing to show us things when she was tiny, and not asking for things like snacks or drinks despite having a huge vocabulary). My belief (and hope) is that there are a lot of people out there like me who would these days probably get a diagnosis in childhood, but who had supportive and understanding (probably also neurodiverse) parents so eventually got the basic level of social skills they needed and have built happy (possibly slightly quirky) lives for themselves. A lot of autistic traits are positively beneficial (e.g. I think intense interests/monotropism can actually be a real boon - but it comes with difficulty changing activity, which obviously schools find a pain, though I think it's less of a problem in real life).

Being very wiggly could be a sensory thing (so possibly autism or ADHD) but then lots of kids will be wiggly at that age as you say. DD isn't particularly sensory, though she used to dislike hand driers, and always complains that the car smells when we drive somewhere.

It's not obvious to me you can do much at home other than maybe talk to him a lot about feelings to help him process them (there are a lot of good books on feelings - I particularly like the Molly Potter ones, and she also has a good one on friendships that he might find helpful - e.g. what makes a good friend, how to make up with friends when you fall out, etc.). We do a diary some evenings, talking about new things DD has done (because she sometimes gets anxious trying new things so it's good to remind her that when she manages it she often enjoys it), and particularly good or bad things that happened that day, which gives us a chance to talk about why things went well and how we could get there again (or how to do things differently next time if things didn't go so well). Maybe that could work well for your DS?

You could also see if having a sensory toolkit at home helps. There is a nice video by Purple Ella (she is autistic as are two of her children) where she runs through the things they use at home.

But really if the problems are at school I think a lot of the solutions will be there too (e.g. maybe having some fidgets available at school or sensory breaks where he can go and squeeze himself in a small space or hang off something?) Maybe you could talk to him about the calling out to see if you can figure out what's going on? I've heard of kids being angels at school but then losing it at home because they have been holding it together all day and then explode (in which case the solution is often at school), but it doesn't sound like he's exploding at school - just different.

LightTripper - thankyou so much for sharing your experience, thoughts and advice. Your daughter sounds really similar in certain ways to my son a d it definitely helps me get an understanding of the shape of his personality and possible ASC behaviour in some useful context.

He also had the hand drier thing! Hated them as a toddler. Which I've now read is a very common flag for ASC.

We talk about emotions a lot (my mum thinks far too much - haha!) - but I'm not sure I always do it the best way I could for him so I'm definitely going to read up some advice on that.

With the calling out, that's the one thing that seems to have stopped - I said to him could he please do his best not to call out because it was difficult for the teachers and he promptly did a week without doing it. But I feel like I still dont know exactly what it was about before - he hasn't been able to tell me, other than evidently not thinking it was that bad. Maybe it was not picking up on the social cues??

Thanks again.... Lots to think about!!

It sounds like you are parenting him in a way that suits him, so whether he gets a diagnosis or not I'm sure he's well supported! And even if the school turns out to have jumped the gun a bit it's good that they are switched on enough to think of it.

The hand dryer thing is very common with non autistic children too I think, so not a clincher. All autistic behaviour is just human behaviour though, so it makes it incredibly hard to diagnose (but on the plus side I think most good parenting for autistic kids will also work well for a lot of neurotypical kids, so your time reading up won't have been wasted!!)

I’m not sure where you are, but most places in England will have very long waiting lists for autism assessments, so I would be talking to the school about how they intend to help your son in the meantime. In my area you could be looking at 18 months minimum, and they do not make it easy to get through to the diagnosis stage.

I do think a diagnosis is beneficial, as often differences become more pronounced as children get older. And even if a child is very good at coping and never needs massive intervention, knowing there is a reason why they might think a certain way, or find things a bit more difficult, is important.

But I would first off talk to the school about what they are going to do. Do they have services they can call in to advise? Can they give him something to help with the fidgeting, like a cushion or a toy he fidgets with instead? How do they intend to help him be more appropriate physically?

None of the things they could help with require a diagnosis first. Ask the teacher who is responsible for kids with special educational needs in your school and ask to have a meeting.

And on the diagnosis. My husband has gone through life feeling different, odd, weird, a bit of a freak. He is very successful, but has struggled. Our son being diagnosed with autism has been a lightbulb moment for him. He keeps reading things and saying “oh god, this is just like me”. He isn’t going to pursue a diagnosis at this point, but he says he feels much better now he has an idea what might be going on. He also feels less pressure to try and pretend to be someone he isn’t, because it probably isn’t just him not trying hard enough to be a certain way,

Hello.

Pigpogtastic - that's really helpful advice. I came out of the first meeting with school with the impression that all I can do to get my son any kind of help was to pursue a diagnosis - once they've got that, then help will be unlocked but without it/until then there's nothing they can do. Certainly there's been no suggestion of any strategies to use at the moment (although I'm sure the teacher, who is great, is doing her best day to day). I've been so blindsided by the whole thing I'd not questioned that assumption, but of course it makes sense that any child who is struggling needs help regardless of diagnosis! So this morning I booked a meeting with the senco and will ask what can be done to support him now/in the meantime, particulary as, as you mentioned can be the case, I believe in our area its a really long wait time.

LightTripper - I watched the Purple Ella sensory tool kit video - it had great ideas in it and I really enjoyed watching it - will definitely watch more of her videos. Great recommendation. Inspiring. Looking forward to trying out some of the stuff, which he can then hopefully have access to at school. It felt like a little chink, an opening onto how I can start to support him at school which I'd felt at a real loss with so far. Its hard to know where to start to look.

Right now I feel like it could go either way in the assessment. So for now I'll try and keep an open mind as has been advised, and try not to be constantly watching and attempting to do the diagnosis myself!! I completely agree that so much of the great parenting advice for autistic kids is great parenting advice full stop - feels really positive to be learning it.

Thanks again.

There is definitely stuff they can do without a diagnosis. Unfortunately you quite often have to get a bit mouthy and become “that difficult parent” to get it. You don’t even need a diagnosis to get an education and healthcare plan, if it comes to that, you just need evidence of need.

When you meet with the SENCO ask if he is on the SEN register. If he isn’t then ask for him to be. Schools are supposed to pay for up to £6,000 of adjustments per SEN student from the SEN budget. Many don’t of course but they are supposed to.

Thanks again, both. There's certainly a lot of stuff I need to educate myself on.