School say DS is ASD, we aren't sure. Is there anything similar it could be?

[ReallyHadEnoughOfThisNow]

We have a very bright 10 year old DS (the school/CAT testing puts him in top 1-5% of children his age and gives him a reading age of 16+).

Since he started Y5, which is on a middle school system of changing teachers for each subject, school say he's finding it hard to cope. They say he chooses not to participate in some lessons, especially if he doesn't see the point (e.g. as an atheist he says he doesn't want to do RE - since we've told him he has to he has been better with this). They also say that he e.g. argued with the headteacher about why he had to do a piece of work he thought was pointless. He's also choosing to help teachers or read at lunch/break instead of socialising.

Ds is always positive/neutral about school, saying its 'fine'. Although he doesn't like the (huge) amount of homework he gets, he generally does it without a fuss.

School are now insisting that he is ASD. They've done a GARS assessment on him, which shows him as 'requiring substantial support' - he currently has no support, but apparently is still doing academically. We wouldn't agree with how they've scored many points - and when we scored him (trying to be objective/negative) his score was less than half of the schools).

From our point of view he is a funny and lovely little boy, but possibly 'quirky'. As he's always had a great vocabulary we've spoken to him 'as an adult' - which possibly explains why he is happy to argue with the head, as he doesn't see himself as less important? He gets on fine with people he knows well. He has 5 year old sister and they get on really well, playing random made-up games of 'let's pretend...' although he does occasionally annoy her by 'pulling rank' and telling her what to do, he also explains stuff really patiently and helps her. He enjoys a range of stuff - video games, reading, thunderbirds, Lego Nexo knights, drama classes, skiiing etc.

He's never had any sensory issues, is pretty well behaved (he was an angelic toddler - no tantrums after 1, as a 2 year old, when he looked round to check what reaction he was getting and got up again when there wasn't one), although he is strong willed, so will argue if he doesn't agree with us.

He finds it harder than most to make friends - if they're doing something he doesn't like then he'd rather be by himself than join in - but is fine with people he knows well and is confident to speak to people - e.g. in shops/asking directions. He has a friend from an old school, who he sees as a true friend, although they rarely get to meet up, but get on well when they do.

I'm sorry this is such a massive post - I'm trying to include anything that could be relevant - but can anyone suggest what 'could' be wrong. Does it sound like ASD to everyone? Or could it just be that he is clever, doesn't see the hierarchy as important/isn't suited to the school environment?

He could be clever and have ASD!

My son has very high IQ, can ‘pretend’, reading age adult etc, etc. He also has ASD.

Children with ASD can present very differently at home and at school because the stressors and the demands are different. Sometimes they will show more signs of ASD at school but be relaxed at home where they can follow their own schedule, sometimes they will mask and appear completely NT at school but have meltdowns at home from the effort of masking at school. So just because you score him differently it doesn't necessarily mean that the school are scoring him wrongly, it might be that they see different behaviours to you.

I wouldn't hurt to have him assessed if that's what the school are suggesting. It might benefit him to have some extra support, especially once he goes to secondary school. My DS with ASD struggled a bit a primary but has found secondary massively more difficult to navigate on all sorts of levels.

It's hard because I think until we have an autistic child ourselves most of us have a very narrow conception of what ASC is and therefore cannot see our children fitting into that (which they don't - because what most of us know about ASC is a stereotype that few if any children fit). Added to that autism research is in its infancy and I don't believe any of the assessment tools are really robust or foolproof (they all come down essentially to the judgement of the clinician on how to score the various points) so it's easy to have false positive or false negative diagnoses.

DD has an autism diagnosis. She is only 4.5 but I can see her potentially developing into a kid quite like your DS. The best description of autism I've seen that I feel actually fits my daughter is "monotropism" (which I had to Google!) but basically means that when she's interested in something she has a huge attention span for it (looking into all the tiny intricate detail and thinking about all the ways it can possibly be) and can find it difficult to switch to something else (even something else she's interested in but definitely something she's not). She'll often not hear us call her for tea when she's playing or looking at books, for example (even if we ask her e.g. "do you want cake?" she will often completely miss it if she's absorbed in a puzzle or book or drawing or something). She is very logical so from when she's been very little we've tended to explain the "why" of everything (e.g. she never said hello until we explained why it's useful to say hello: now she sometimes does although she's still quite inclined to launch straight into telling you about whatever she's thinking about or wants to know). Like your DS she does lots of imaginary/pretend play and usually plays really nicely with her brother and she also has friends. I think she is keener than her peers on rules and sticking to them, and like your DS there is no way I am ever going to get her to do something because "that's just what you do" or "because I told you so" - she needs a reason. I'm told she eats her lunch slowly at school, which I suspect is partly because it gives her a bit of peace and quiet before hitting the chaos of the playground (which she quite enjoys, but I think she finds it more exhausting than most kids and needs quiet times to herself as well). But other than a dislike of handdryers and motorbikes when she was little (now she is 4 she is usually OK with both) no very obvious sensory issues.

Probably some of that sounds familiar and some of it doesn't: every autistic child is different (just as every child is different!)

As far as I'm aware schools cannot diagnose autism, so there is no way they should be telling you he actually has it. Traits they may see - but plenty of neurotypical kids have some autistic traits.

That doesn't mean that a diagnosis might not be useful of course, or that supports that are useful for autistic kids might not be useful for your DS (whether he is or isn't autistic).

I guess my question to the school would be what they propose to do; are they suggesting that your DS gets assessed, or going straight to putting interventions in place? And if they would intervene/provide support, what would that look like? If it's stuff your DS would actually find useful (a quiet place to go at break times, more heads up on what's happening next/changes in routine, help with getting from class to class and keeping on top of homework) then why not? If it's all framed around getting him to join in and fit in I'd be more worried about whether the school is a good fit.

Something else to bear in mind: a lot of what the various assessments pulled out as being "disordered" about DD I don't consider disordered at all. It doesn't mean she's not autistic, but autism runs in families and a lot of autistic traits work perfectly well (particularly in the context of a wider family that operates the same way - e.g. being direct, giving reasons for things) but may make it harder to fit into a wider world that is very narrow-minded and rigid in its expectations of how we should all behave. Some of the "play" they said my DD should be doing (e.g. setting up a tea party and getting her toys to pretend to drink tea) sound unbelievably boring to me and I never did as a child, so it didn't strike me as odd when DD didn't do it either (her pretend play tends to be more fantastical: dragons and witches and magic and volcanoes erupting in her bedroom and stuff like that). You may be partly not seeing autistic traits in DS because other family members have them too, so they are "normal" to you. Which is great because it means you know just how to work them to your advantage and can teach your DS how to do that too: but it may be that some accommodations in school could still be a welcome plus for him.

Thanks everyone for taking the time to reply, I really appreciate it.

@Claw001
He could be clever and have ASD!

• Absolutely. I'm sorry, if it sounded like I was implying a child couldn't be both, I just wondered if 'cleverness'/willingness to be stroppy and argue a point could be seen as ASD by an intolerant school system. Or if it could be something else (which I don't know about) that school could be deciding is ASD.

@BlackAmericanoNoSugar - You're right, I'm sure he presents very differently at home and at school. I just worry as they've said things like he doesn't understand jokes or slang at all and I'm thinking 'Are you talking about my DS?'

@LightTripper - Thanks for taking the time to write such a detailed post, a lot of what you've said has really struck a chord with me. Definitely I wonder if we don't see things that would make DS unusual, as its what we're like as a family.

I also agree with your point about the tests not being foolproof as they're opinion based - and I worry that the school will insist he is and DS will get a diagnosis that may not be correct due to their convictions. To be fair they haven't said he does have ASD, but have said repeatedly that they believe he do, that they've worked with other children who have it that are just like him etc etc. They want us to pay to have him assessed, which we've decided we will do, as we want to get support in place if/as he needs it - especially for when he moves to senior school.

That's why we went ahead with a Dx for DD. She is totally fine now (other than a couple of classes she doesn't join in with) but from what I read senior school transition and teenage years can be tricky for kids on (or near) the spectrum (certainly it was my least favourite but of life), and if she needs support or accommodation at that point (or before) I don't want her to have to wait for a Dx. Plus I think Dx can be harder as they get older and learn to mask.

It's not an easy decision though. I think in the end you just have to decide if you trust the judgement of the professionals doing the Dx such that if your child needs a Dx they will get one and vice versa (even though we know it doesn't always work out that way).

I have found being ‘clever’, makes difficulties not as noticeable or more subtle. Not suggesting this is the case for your son, just my observation of mine!

I suppose, the only way to know for sure is to assess. Why are you being asked to pay?

Regardless of a diagnosis, if a child needs support, they need support. Why are school suggesting he can only have this with a diagnosis? Support should be needs based.

My eldest (13) has ASD and he struggles hugely with doing things"just because" particularly when he doesn't see the point. He's in an ASD base so the teaching staff have been hugely patient at getting him to engage in school work. He can sound very clever and loves to debate all kinds of things, but he's bombing out academically.

Whether your son has ASD or not, I think it would be hugely helpful to try and get to the bottom of his difficulties in engaging and to get some strategies on how to help him manage this.

For my DS1 it is very much apart of his ASD - he is very rigid in his thinking, some subjects are difficult for him to access and he doesn't understand social expectations properly.

Has the school asked the LA Ed Psych to assess him? I think it's a bit over the line asking you to pay for a private assessment. Waiting lists are long which may be why they're suggesting it, but I don't think that's right tbh. If you aren't convinced about him having ASD but are considering private, I'd look at a private EP and wait out the NHS ASD assessment.

Time is of essence I would say. If your DS has increasingly more difficulties since year 3-4 or so, even growing from a low base, and it increased visibly last year, chances are each following year will bring additional challenges with implications for GCSEs. Generally my experience has been that each year in secondary brings new and increasing challenges even for a diagnosed DC with an EHCP. So basically your DS might need the Dx and support soon to protect the GCSEs. Hence go private if you can afford.

LightTripper made this excellent point:
It's hard because I think until we have an autistic child ourselves most of us have a very narrow conception of what ASC is and therefore cannot see our children fitting into that (which they don't - because what most of us know about ASC is a stereotype that few if any children fit).

It also has been the journey for me, I should think for many parents.

You might want to look up twice exceptional as a definition. You may find it ticks some boxes. With levels of high intelligence but also some issues. DS has a Level 1 ASD diagnosis but it's never sat true as being the only issue when I read the 2e (twice exceptional) definition it nailed him completely.

Thanks so much for all the advice and support.

"Whether your son has ASD or not, I think it would be hugely helpful to try and get to the bottom of his difficulties in engaging and to get some strategies on how to help him manage this."
This is so true and we are arranging to go forward with a Clinical Psych and are meeting with him in a couple of weeks, so hopefully he'll be able to work out whats going on and how we can help.

I agree its better to do it now, rather than to wait and have changing schools or starting gcse courses be causes for concern or impacted by difficulties he's having.

@DobbinsVeil - school said ds wouldn't fit the criteria for nhs testing, as he's still achieving well and budgets are stretched, so private is the only option. Also, my stress levels are through the roof worrying about him, so probably better to get this looked into sooner rather than later.

If you are worried and can afford it I think private can be a good option, but I'm sure I've read that some LAs don't accept private diagnoses (because you know we parents go out and buy them for fun... ) so I've read advice to make sure it is somebody who does also diagnose on the NHS even if you go privately.

Thanks @Lightripper, I've heard the same thing re diagnoses. Just one more worry to add to the list... the psych I spoke to assured me their diagnoses were accepted, then mentioned taking a LA to court as the school weren't accepting it! so reassuring!

I think my feeling right now is to fast track the appointments through, see if and what diagnosis is needed and get strategies in place, then look into 'ratifying' it through the NHS if necessary at our (or their) leisure.

I think going to Tribunal is very common regardless of who gave the Dx to be honest, so the key question is whether the Tribunal will accept it. Just seems to be one of the hoops that most parents need to jump through these days.

I've heard some areas are restricting the criteria for an ASD assessment, though I think this is being challenged, so may be worth making local enquiries.

There's no basis in law for an LA to be able to refuse a private assessment, though some LAs are more accepting of this than others. But at this point in time it doesn't sound like you'd be looking at getting outside agencies in/EHCP etc, so I'd not worry too much about that for now. You know the primary school will be accepting of it, so hopefully the secondary wouldn't have any reason to query it when he moves on.

I hope the clinic psychologist is able to offer some insight and strategies that may help.