Can someone please explain how autism can be diagnosed in older children. Is it not always obvious?

[SorryNotBeSorry]

DS9 has today received a diagnosis of ASC. I was expecting it but now I’m genuinely confused about how I’ve been stupid enough to miss it. Have I let him down?

He generally manages well. There were ‘signs’ when he was younger (exceptional reading and numeracy skills, some sensory seeking behaviour) but we just thought he was an academic child. He has friends, he’s happy at school, he’s in a swim club.

It wasn’t until two years ago when he started to become ‘difficult’ to manage at home. Nothing changed at school, but his behaviour at home was more challenging. He has a step sibling diagnosed with ASC and this prompted us to get a referral for him.

I feel terribly guilty that he’s now 9 ; aren’t most children diagnosed in toddlerhood?

In reality , I don’t think he would have met the criteria for diagnosis before now. So why do I feel so bad?

Going forward, he needs no ongoing support and he doesn’t require any specialist support from school.

Can someone please explain how common this is? Is 9 still young or have we really messed up and let him down?

He's masked until now.
But as life becomes more complex, and expectations become higher, it's hard to keep up the pretense.
You've spotted he's struggling. You are putting in place things to make his life easier. You're doing great, and he is lucky to have you looking out for him.

My DS is 8 and awaiting a referral. We didn't notice any issues until he went to school TBH.

My mum is in her 70s and knowing what I know now about autism, I suspect she has it. But mental health problems were highly stigmatised back then. I suspect I probably have it based on similarities between my mum, my DS and I. I guess having been brought up in a home where these kind of behaviours are normal, I never questioned it?

I definitely think I mask. I find being around people and behaving like other people absolutely exhausting.

My son was diagnosed at 13. He displayed very few of the typical indicators. Which meant that we, his parents, as much as any specialists we came into contact with, could and did easily say we thought what was going on was due to something else instead. I still feel awful as if I failed my son for not recognising it earlier, but for him it's been very subtle all along.
Please don't imply that parents 'always know'.

My DSs were 9, 8 and 11 at diagnosis. Looking back all the signs were there with DS1 - even in his nursery reports - but school were not on board and pushed against it. DH wasn't totally with it either as he didn't see many other kids to compare. Also the behaviour that was not acceptable at 5 was really not acceptable at 8. DS2 was slightly more obvious, he has ADHD which presents more of an issue. And for DS3 we've had 'he's just copying' but also he doesn't explode like his brothers because we live in a very rigid ASD-friendly household where all the same meals are served at the same time etc so he's not challenged as much as DS1 was when we were trying to live a normal life.

I'd repeatedly asked every HCP, every nursery teacher, every teacher if there was an issue. No one would or could see it until he was about 8.

Sorry, just to clarify OP that I was not suggesting your post was implying that. Just more of a general comment.

My nephew wasn't diagnosed until 8 years old, even though he has always "displayed signs" of ASD. My SIL had to fight and fight for his diagnosis, and ended up going private.

Everyone else just thought he was very clever, that the meltdowns were just due to him being the only child in the family for so long then having siblings (so people thought it was a bratty meltdown rather than an ASD struggling meltdown) he would always really try to play with others (and as long as they were playing what he wanted or the game was going his way, it was fine) he struggled with balance and coordination but they blames it on being clumsy and his need for glasses.

It's very easy to look back now and see clearly how "obvious" his ASD was, but at the time it wasn't so obvious

It’s reassuring to know others have had the same experiences. It must be very difficult to spot ‘high functioning’ children.

My ds was diagnosed at 13..
A lot of his symptoms were masked by his deafness and other learning difficulties...
His deafness wasnt diagnosed till he was two and a quarter but that is a whole other story!

When my middle DS was diagnosed I actually asked about challenging the decision as I was convinced they had made a mistake. Looking back there were some things we missed but until he started in Reception Class at school he hadn’t shown many signs. Don’t beat yourself up about it, you’re not alone.

Autism is a huge spectrum, my son has severe autism and learning disabilities he is non verbal, he was diagnosed a three, however it was very obvious, autism presnts differently in different children.

I don't think it's just masking. Younger toddlers or preschoolers are not notorious for hiding their feelings! The demands placed on older children are greater. Toddlers are preschoolers can play alongside other children. When you are 7 or 9 parallel play is more unusual. All babies have echolalia at some point. It's only when other children stop doing this that it becomes unusual.

My understanding is that many of the children who are diagnosed younger have delay in many areas e.g. motor, language etc. etc. and the ASD goes along with that.

The problem with autism is that it manifests in a million different ways, with none of us being the same. Some have the very obvious signs, others have clear signs but only if you know what to look for. I was told my DD showed no signs of autism by her teachers, by the school nurse, by the school doctor (although he did admit he didn't really know much about it in girls) but the consultant who specialised in autism in girls saw it straight away and only tested to confirm it.

Even world experts can miss it. Tony Attwood's son was diagnosed as a young adult. Tony Attwood is one of the leading experts on autism in the world but he still missed it in his own child.

Before retiring I was part of a diagnostic team. Two points here, dx can take between six - 18 months, so a child who gets a dx at nine was in the system at seven and a half, seven is around average age.
In my twenty odd years experience, we have diagnosed from two to sixteen, so I shouldn’t worry about nine being overly late.

Tony Attwood, who is an expert in autism, didn't realise that his own son had autism until he was diagnosed in his thirties. He says, with hindsight, the signs were clear but he didn't see it at the time.

DS was diagnosed at just turned 8, having been referred at 6. The OT who did his ADOS told me this was quite early for “high-functioning” / Aspergers (as DS would have been pre-2013). Apparently the average age for HF girls to be diagnosed is 13!

I’d had my suspicions about DS since toddlerhood, but it became more obvious the older he got, when his peers began to grow out behaviours and he didn’t; not so many 7 year olds having tantrums (which were actually meltdowns) and constantly sensory-seeking (even at 10 he still has to touch everything, which has been a bloody nightmare these past 18 months…)

Does your DS know about his diagnosis OP? He does he feel? It was a big relief for my DS, as he already felt a bit “different”, and wondered why he found certain things so stressful and difficult while his friends took them in their stride. Although we had very no ongoing support after diagnosis and DS needs very little support at school, being aware of why DS is how he is has been helpful for all of us.

I'm about to go for a diagnosis for my 10yo DD. Some of the earlier signs were things like restricted eating which is fairly common in NT children. It's only recently that her social and emotional difficulties have really become apparent. She has never needed help or support at school.

My son was diagnosed at 11. It took over a year for the referral and prior to seeking the referral (prompted by an acquaintance who was a specialist in the area) we had zero clue he had ASD. We thought signs which in retrospect were there were just his personality/ hormones. I don't see it as a failure on our part. We weren't looking for it and so we didn't see it.

My son was 13!
Looking back now, it was obvious but he's so like me that I never even thought of it.
He taught himself to read at 2 and could count in French, Spanish and English up to 100 before he started nursery.
His year 2 teacher mentioned getting him tested but I didn't think anything was "wrong" with him.
Once he went to high school though, things went tits up. He couldn't cope with the busyness, the noise or the constant changing of classes. He started self harming and hearing voices due to stress.
Ended up taking him out altogether and home educating as he was threatening to kill himself.
He's 18 now and much better. He's quirky and isn't great with other people but he's much happier than he was.

My dd was 11 when she was diagnosed. It's very common for traits to become more apparent as they get older.

You have nothing to feel guilty for

Ds has just been diagnosed at 14yo.

Signs were there before, something I'd always wondered. But when I asked I got one of two responses:

1. (school response) "He's a summer term boy, he'll grow out of it." He did, kind of, but it was still always there.
2. (medical response) "He has glue ear, the behaviour is similar. We'll look when he's grown out of glue ear". He was 12yo before he grew out of it.

What happened for me, was he was doing a extra curricular trip which involved leaving quite early in the morning. There was the teacher talking to 11 children in the dark at 6am, all standing listening quietly. There was ds running round them in a circle.

I decided that enough was enough there and pushed it. Generally fairly painless (although his head of year not sending back a form because "she didn't know how to fill out a pdf form" was a low point) and diagnoses took approximately a year.

I'm about to be diagnosed in my 20s, don't stress about it! 9 is still plenty young enough to learn about it in an organic way and grow up seeing at as part of his identity.

Also as he gets older he might well have a "spiky" profile of skills, try not to worry about this too much. For example, my (also autistic) sister has a highly qualified graduate job and a longterm boyfriend and lives alone most of the time, but still struggles to wash her own hair so me or my mum help her with it every so often to keep it reasonable, and remind her in between. I'm about to move countries alone for work, but today I have been to the park to play on the bouncy rocker (sensory seeking) and spent a long time just cuddling my teddy bear (comfort item to ease transitions). My point is that support needs can change over time and our development isn't necessarily in line with what might be expected for neurotypicals, and you don't need to feel bad about not spotting it earlier if you or (when he's older) your DS has instagram I'd recommend looking up the #actuallyautistic content as a good way to learn more about lived experience

We’ve just got a referral for DS who’s just turned 9, still waiting for an assessment. I’ve known he’s ‘challenging’ since he was preschool aged but his more challenging behaviours were reserved for at home so school and the GP never took me seriously. It’s only been this year school have started to recognise some unusual behaviour and been supportive in seeking a referral. The more research I’ve done the more I’m convinced he will be diagnosed it’s just a waiting game now.

DS1 was diagnosed when he was 7. I felt so stupid and guilty, like you @SorryNotBeSorry, I couldn't believe that I'd missed it.

At the diagnosis they told me that it's pretty common. Parents attune to and love their children as individuals. They see their quirky, lovely child and accept them for who they are, it often doesn't occur to them that their child may neuro diverse.

My DS was diagnosed with social communication disorder when he was three - that's basically the 'spiky' autistic profile but not at a high enough level for an autism diagnosis. The pedatrician basically said 'that means we'll probably see you again around primary 3 or 4, because if he does have autism that's when it will become much, much clearer.' And they did, and he does.

So don't beat yourself up, it's incredibly common to get a later dx especially for verbally able children.