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?

Dd is nearly 9, has just been assessed, can't say diagnosed as only NHS can diagnose. I first had concerns when she was 5 dh dismissed them. In year 2 I raised concerns with school and got sent on a parenting course.
Half way through year 3 dd was struggling and an emotional mess. I went to the head in tears and asked for help. At the end of year 3 her teacher said she was fine and had no autistic traits. Luckily the senco supported me and said she believed she could be a different child at home compared to school and girls are good at making.

She advised us to go for private assessment as local authorities wait is 2 years plus!
We have just had her assessment and she meets the diagnosis criteria. Very clearly in some areas .

im 38 and only now, as of today, being sent for diagnosis!! i knew with my son from very young but i have masked my whole life and even though i knew i was different to other people it never occured to me why that was. The person referring me used to the assessments for adults themslves and said she definitely believe i have it and thertes no way i wont get a diagnosis confirming it so dont beat yourself up, ive got to my old age and no one noticed! and i doubt that its that you didnt notice as such, when things become more problematic is when many peopel seek diagnosis so i dont think you have anythign to feel guilty for, soem of us are brilliant at masking things

It’s a spectrum condition and everyone presents differently. Not everyone has meltdowns. Also, girls often present differently from the ‘classic’ male-based criteria held up by the medics historically ( e.g Kanner and Baron-Cohen’s ‘extreme male brain’ hypothesis). . My DD was diagnosed at 13 and I had no idea until she was 12 and the demands of secondary school became too much. This is despite working with many autistic young people. High- functioning, articulate and academically able children are often diagnosed late- and often this leads a parent to the realisation that they are also ND.

We didn’t get a diagnosis until 9. We of course had suspicions, very stubborn, extremely picky eater, sensory seeking, and just ridiculously academically intelligent. Dd masked well. It actually wasn’t until she was in an accident and had to spend a couple of months recuperating physically that she couldn’t keep up the masking at school anymore and the stress got to her.

My dd is on the ndas waiting list she's 12 the signs have been there since she was 3 but it's taken me this long to get anywhere. We've now got a new pediatrician thats good so hopefully thing will happen now

Pressed send before finished. Other people don't realise she might have asd. She can mask for a good couple of hours before she explodes

DS was diagnosed at 8, referred at about the age of 7 after a few years of me being in denial. He was hyperlexic and, looking back, 'typical' of Asbergers (which is his diagnosis)
DD was also diagnosed at 8 but that's because we bypassed the system and went to a private ed psych. I mooted her having an ASC at her first school when she was about 5 but was told she was just copying DS despite the fact that their behavious were different. Her year 2 teacher (at a second school) repeatedly said there were no issues until one day she let slip that DD had spent most of the day wedged between 2 shelf units growling at people...........
If we had gone via the NHS route I think it would have taken until she was about 11 to get her diagnosed.

If we are talking about late diagnoses my Dad is 81 and was diagnosed last year...................

My dd wasn't diagnosed until she started secondary school and massively struggled to cope. She lasted only a few months. There had been some signs before, but as she had always done really well academically, school (and health visitors) told me there was nothing to worry about when I raised concerns and that she just struggled with friendships because she was an only child (?!). It's obvious she thinks differently now she's older and apparently it is quite common for girls to start to struggle at secondary age when communication becomes less direct.
Like you I couldn't believe it hadn't been picked up sooner, but the paediatrician told me she'd been around plenty of professionals at school and SALT and they hadn't picked it up either so not to beat myself up.

If they are on the spectrum but fairly high functioning it is often only when life starts to get more rigid that they get diagnosed because they can cope with life until year 2/3 at school ok masking. With girls they can often cope until early teens in fact. My dd was diagnosed at 2 but due to complete lack of speech and seizures which brought her to the attention of neurology early (she talks fine now as an adult but obviously still autistic, mental health issues are her main problem in coping with life)

DS was only officially diagnosed at 17 despite having an assessment at 11 (referred at 9) and not fitting the criteria then. He’s been systematically failed by the NHS and the education system. He’s now 19 and cannot access education or employment due to severe social anxiety, depression and self harming.

It’s good that you got a diagnosis before your DS hits his teens so he’s eligible for support if necessary. That’s when the shit hit the fan for my DS.

I knew since he was about 2. He used to line up his Thomas the Tank Engine stuff (classic), go rigid when I picked him up, spin around constantly and hand flap. He ate everything and was very sociable and verbal (overly so), met all his milestones so HV wasn’t bothered. He is one of a set of twins but the differences were acute! He was also literally bouncing off the walls half the time, wouldn’t sit for crafts or reading. He never had meltdowns and still doesn’t.

When he started school and had to conform the real problems started but school said he was just naughty and needed more discipline. GP wouldn’t assess, said school had to. School wouldn’t despite him lagging behind academically. They got an educational psychologist in but didn’t follow the recommendations. They finally referred him at at 9 for ASD but he wasn’t assessed until he was almost 12 and at secondary school.

We were told he didn’t have ASD or ADHD but had severe learning difficulties despite his reading age coming out at 16!

Then we had years at shit at secondary trying to get him an EHCP which we didn’t get until he was 15 shortly before we removed him from school due to all the sanctions he was getting. EHCP didn’t make a blind but if difference.

He’s been kicked out of the supported studies unit at college twice due to lack of engagement and his social anxiety (refusing to go into class, self harming) and it’s only now he’s just this week finally having assessments for support from the SS disabilities team and the NHS disabilities team.

It’d been an utter nightmare so I would say now you’ve got the diagnosis make sure you fight for whatever support he needs because it won’t come easily.

My worst case scenario for DS has come pass.

Excuse the rant!

DD wasn't diagnosed until 15. A lot of the things that became problems weren't unusual in a younger child and for a long time we assumed she'd grow out of them until she didn't. Also she's a twin and I think her twin was "managing " her at school without realising it.

DD was diagnosed mid teens, and both my nephews when slightly younger. I suspect I have it (based on my DDs testing and my own similar responses) and my elderly aunt definitely does.

My DS was 12 it was Aspergers dx in those days
I always thought there was something- maybe SPD. He was very precocious in his language and a bit clumsy/behind in gross motor skills. He sought out social contact but didn’t really make friends until his early teens. He struggled a bit with peers. But he was an only child it was typical in our family to be a bit nerdy and clever.
Like your son, needed no further support at school.

Interestingly now, as an adult, he doesn’t accept it. And questions why I went for a diagnosis. He does admit though that he worked hard on being very straight as a teenager.. He is very confident and successful in his career - but hasn’t managed well with relationships so far Whether he is diagnosed or not I’m sure your son will have lots of support from you and do well.

I was diagnosed at 24, having completed a degree at a top uni and got a job in banking… my parents still don’t believe I have it!

Looking back, my whole family are probably neurodiverse and undiagnosed and therefore assume that the way we are is normal- I’m the weird one for being diagnosed!

My dd was diagnosed aged 16. She was always well behaved at school but would have 5 or 6 meltdowns once home or even on the way home. I didn't know about masking then, hence the late diagnosis. I feel bad because i just thought she was really naughty and didn't know she was struggling. She's doing really well now and is working with plans to go to uni

We noticed there were issues with DS from 2 or 3 but they weren't unusual enough for school/GP and even us to realised until his SALT said something isn't right. Even then we had to get a private diagnosis as school didn't think he was 'bad' enough. I was a bit surprised by the diagnosis myself. Not all people are affected in the same way after all. My DD is 16 and only now are we questionning whether she is also autistic.

DD is 8 and in the middle of the diagnostic process - it's become more and more evident as the social and communicative demands on her have increased as she's got older... when she was younger and friendships were navigated by simply announcing X was now your friend - she coped OK, but as it gets more and more complicated - she's really struggling.

She's also recently been picked up as having quite disordered higher level language processing skills - again becoming more evident as language demands have increased - I'd suspected it for about a year or so (I'm a SALT student myself), but Covid's meant a delay in getting an assessment there.

I'm in the middle of waiting for an ASD assessment myself. It's taken years for me to piece together all the bits of the puzzle about constantly being in trouble for saying the "inappropriate" thing, my glorious internal monologue having to actively monitor turns in a conversation so I didn't piss people off (I sit in meetings with a tally chart and a self-imposed limit of number of times I'll speak up), my lack of close friendships and obsessive interests/information gathering when things interest me, the endless sensitive quirks and fact that I instantly reach to turn down the TV to number 10 whenever I enter the room as it's just physically painful to me... and the fact I spent most of my childhood getting my head kicked in for being "that dead odd girl".

I was doing well at school (although desperately miserable) - no one cared about much else back then.

Dd was 9 at diagnosis. Referred at 7. She struggled from playschool really but as a pp said, she was just our quirky, clever dd who had very firm opinions and was shy. I had considered that she might be autistic but wasn't confident enough to raise it. An independent adult (with relevant experience) raised it so we got going on referral.

Haha @user1471548941 that sounds very familiar! Pretty sure most of my family is neurodivergent in one way or another, in fact most of my parents' generation doesn't really believe me because "everyone is like that/ does that/ thinks that way". On the plus side I've started a chain reaction amongst my own generation of cousins and all 5 of us are currently looking at diagnosis for ASD/ADHD/ DCD etc etc

Can I ask those who were diagnosed in secondary or late primary what the route to diagnosis was? I wonder about my 11yo dd but school think she's fine as well behaved in school and bright. I'm also now starting to wonder about ds who is 6.
Did you got to GP, did school refer, did you go private?

I'm finding this really helpful. My DD herself actually came up with concerns she might have ASD or ADHD...school are just ignoring it, GP has been rubbish, she's now moving to secondary and I've just sent a very long email detailing all the quirks she has, to flag her up as I'm hoping we might get some answers for her.
She's highly intelligent, wonderful and odd...but she's just DD, it never occurred to me she might have either, but the more I look into it the more it makes sense. DS too, however his behaviour is awful so school have referred. Still not heard anything, either for him (been 3 months) or DD referred to CAMHS for self harming and anxiety.
Not sure what to do for her next as her primary aren't supporting it.

Ds1 was diagnosed aged 9. We initially went to the HV when he was 3, who didn't think he had it but the gp did the referral just in case. When he was 4 the paediatrician said he didn't have it. When he was 8, his teacher said we should get him assessed again. This time, the paediatrician diagnosed him with ASD.

Ds5 was showing symptoms from birth. He wasn't allowed in the system until he was 2. We saw about 5 different locum paediatricians and he was finally diagnosed aged 6.

@Simplelobsterhat

Can I ask those who were diagnosed in secondary or late primary what the route to diagnosis was? I wonder about my 11yo dd but school think she's fine as well behaved in school and bright. I'm also now starting to wonder about ds who is 6. Did you got to GP, did school refer, did you go private?

My dd was diagnosed at 11.

She’d always been difficult to manage…emotional regulation and socialisation were always hard for her (but she masked perfectly well at school). Once friendships started to get more complex at around age 9, she started to struggle more and more. She went from being a child who flew under the radar at school (but very bright academically) to a child who started hiding under tables, banging her head against the wall, having huge meltdowns in the playground over friendships and then self harming in y6. Her friendship group shrank to almost nothing.

I spoke to my gp who referred us to a community paediatrician for an asd assessment. We were eventually passed the the neurodevelopmental team at our local children’s hospital where 2 psychologists carried out the ados and diagnosed her on the same day.

Op, as you can see from my dd’s story to diagnosis, it’s not always straight forward, especially for those children who seemingly cope/mask…until they don’t ☹️.

@stimtoysandpanicattacks you sound so lovely!

My dd is 16 she has been diagnosed with ADD and is back on the waiting list for ASD diagnosis. Camhs have met her several times and they agree with the pre-diagnosis diagnosis but the wait list is so blinking long.

She masks A LOT and it takes it out of her. Today for example she went to register at college. When I came home from work she was lying with a sleep mask on because the concerted effort was too much.

She has her toys: a weighted blanket, noise cancelling headphones the poor cat who is her support animal much to his disgust.

Her differences are more noticeable now she is older.

@Iimaginethiswillbefun aww thank you! I hope your DD gets her diagnosis soon, CAMHS is such a pain. Yeah I got away with just being a bit "quirky" as a kid, too mature in some ways and "childish" in others, but nowadays it's definitely more obvious