Does ‘suspected ASD’ ever end up not being ASD?

[TwinItToWinIt]

My 4 yo DC is currently in the process of being assessed for ASD. There’s definitely a speech and language issue there, and some other classic traits too, although in other ways they present as fairly NT (sociable, no major sensory issues, imaginative play etc), so I suspect it’s not going to be a straightforward diagnosis.

I’m just curious really if anyone has had a child with ‘suspected ASD’ who has then NOT had it? And if so, did it just turn out to be a development issue that they eventually ‘grew out of’, were they diagnosed with something else, or did they grow up as someone with ASD traits but without a diagnosis of autism?

(I should add - this isn’t a ‘clutching at straws’ thing. I love my DC in all their quirkiness, and although I strongly suspect they’re autistic, I sometimes wonder how things will then pan out if it turns out they’re not.)

The language one I’ve always found really interesting, probably because I’ve never worked out if I just usually more or less say what I mean, if I stopped saying things because DS (he wasn’t little at that point) would go, that doesn’t make sense that’s not what you actually mean is it? Or because DD when younger would know exactly what I meant but find it funny to do things like jump if I said it lol

Though we did once have the spider incident, where he did indeed get the spider out of the bath for me - but releasing it into the bathroom instead wasn’t really what I had in mind.

But mostly I think my point was, sometimes we’re asked things and our answer isn’t always as clear cut as the check list of an assessment and it can be a bit useful to remember that and have a longer think about some of the things you’re asked.

My child has seemingly really good eye contact but it’s entirely on his terms. If he wants to make eye contact with you he will, even to the point of being quite forceful about getting into your visual field. If he doesn’t want to make eye contact for whatever reason then good luck!

He’s incredibly literal, and like others we have to be careful what we actually say.

He does play imaginatively but it is within the same subset of topics/scenarios. He has a special interest that involves a well known character, which will be his default generally. He likes to direct play, and I only know of one child who he will allow to direct (that child is also unable to allow others to direct, which he seems to implicity understand).

He is hugely empathetic, almost to a fault, and can be deeply concerned for other people.

Almost all of his triggers result in unreasonable behaviour/tantrum/rage as he’s got older. It almost always relates to anxiety about something. But he masks very well out of the house, so unpicking is a chore...

There's some great replies on here and I've appreciated reading the insights as a parent who is about to start the process with our son, and I suspect will likely come out of it with a diagnosis of autism.

Can anyone (very simply/briefly) outline the assessment process? He's 2 and has a 2 year review with the HV next week (will result in a SALT referral as a minimum) and we have a meeting with the area SENCo (with the nursery manager joining us) in January and the SENCo person is doing observations at nursery too. What should we expect to happen next?

“Can anyone (very simply/briefly) outline the assessment process? “

It varies enormously between areas. Here the school senco referred him to paediatrics, along with a pile of reports from his teachers, various screening questionnaires etc. Rejected. Senco tried again a few months later, having done even more reports, at which point they agreed to put on the waiting list to assess. He was then seen for an ADOS test (a one hour “play” session just DS, a SLT and another professional, I think he was a paediatrician), a specialist teacher observed him at school, we (his parents) were interviewed, they gathered all the paperwork and had a multidisciplinary meeting about him and then we had a meeting with the consultant and agreed he should be diagnosed. Once the referral was accepted it took a year to get the diagnosis, but there were several years of teachers reports, HV checklists etc that were part of it too. I’d suspected since babyhood there was something going on, I was certain by the time DS was 3, he was finally diagnosed a few years into primary school.

@Theotherrudolph

“Can anyone (very simply/briefly) outline the assessment process? “

It varies enormously between areas. Here the school senco referred him to paediatrics, along with a pile of reports from his teachers, various screening questionnaires etc. Rejected. Senco tried again a few months later, having done even more reports, at which point they agreed to put on the waiting list to assess. He was then seen for an ADOS test (a one hour “play” session just DS, a SLT and another professional, I think he was a paediatrician), a specialist teacher observed him at school, we (his parents) were interviewed, they gathered all the paperwork and had a multidisciplinary meeting about him and then we had a meeting with the consultant and agreed he should be diagnosed. Once the referral was accepted it took a year to get the diagnosis, but there were several years of teachers reports, HV checklists etc that were part of it too. I’d suspected since babyhood there was something going on, I was certain by the time DS was 3, he was finally diagnosed a few years into primary school.

Thank you for sharing your experience, its very helpful to know a little bit more about what to expect. Nursery have been doing observations since he returned after the first lockdown at 18 months, and we seem to have a very proactive health visitor too (already had hearing tests done, appointment next week to review and complete SALT referral now he's old enough)

There's clearly something atypical about him (he ticks every point on the diagnostic criteria that @hopefulhalf posted with multiple examples of most) but it'd be nice to have a diagnosis of something before he starts school on the basis that I assume it'll be easier to get the support he will likely need with a diagnosis than without.

@Twinittowinit it’s hard to say, some make progress. I’d pay for private SALT if they were mine, honestly. Also look at language bases within schools - specialist support within a mainstream setting. I’ve seen many children make great progress with this support at primary and then go on to a mainstream secondary. I would say though that we don’t always appreciate just how much we rely on language, especially in learning, and it can impact children academically. It’s hard to learn to add and subtract for example if you can’t remember what those words mean.

Thank you! I’ve been having another look into language processing disorders, and it does seem in lots of ways to be a better ‘fit’, so it is something I’ll raise next time I speak to the paediatrician (tho he did suggest it was one of things under consideration). In lots of ways they really don’t seem like they have ASD. Although I realise ASD often doesn’t present ‘typically’ - so we’re back to the question of when diagnosis is a judgement call that I was kind of pondering when I started the thread!

But thank you everyone - it’s been really helpful.

For a long long time I wondered whether my son, who had a number of autistic traits but no massive red flags, was autistic or not. It was genuinely hard to tell whether his social/communication delays would disappear if his speech and language caught up with his peers.

What I found was that as his speech improved, he was more able to explain his rigid thinking (for example, the summer of 2019 he had a huge meltdown because he wanted to hold his blue umbrella but that was 200 miles away at home )

That’s when I knew he was autistic (he had other traits incidentally, like hyperlexia).

He didn’t receive an official diagnosis for another nine months, by which point we’d completely accepted it and made peace with it.