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?

I've taught an awful lot of children diagnosed in Y3 or Y4 (same also for children with ADHD). They start to struggle around Y2 and get a diagnosis in LKS2. I'd have thought a diagnosis as a toddler was more unusual.

There were always signs with my son from being a baby. He was diagnosed age 8 this year. To be honest his autism has evolved and become more obvious as he's getting older. And even more difficult since his diagnosis, I am dreading him getting worse as each year ticks by. I know that sounds horrible, I don't mean it to, we adore him, but life seems so limited for him. He is hard to motivate to do anything other than his set interests which are limited in themselves, and the food he eats is getting less and less, he is less tolerant of others and loses his rag easier. To answer your question op, I don't know if the way it's gone with us is common, but I think it can be missed until they are about this age.

12 years old for my oldest.

I had a feeling that he was not like other children early, but it was dismissed by others. When when I pushed and pushed it was misdiagnosed as something else by an arrogant and also mistake-filled organisation. It became clear to me though that my ex-H is autistic so the thought was never far away.

Finally school pushed me to get my youngest assessed and that came back with several autistic traits but not actually autistic. The assessor was that good and perceptive that I paid for a private assessment with her of our oldest and that came back very clearly that he is autistic.

He's very verbal and witty so most people just didn't realise.

But he has big problems with boundaries and understanding social conventions and cues, organisationally he's not good and he absolutely struggles with changes to plans and with sensory issues. I know teens struggle to see things from other peoples' povs but his struggle is somehow qualitatively different, just like his Dad.

But he's learning to identify his own needs and how his brain works and sometimes when the food has to be arranged a certain way on his plate, we can laugh (in a good tempered and kind way) about him having an autistic moment. There's a great deal further to go though with behaviour and especially boundaries.

This has been very helpful.

My ds will be 13 in a month and he has just been diagnosed today. I have suspected since he was 2 but he coped extremely well at nursery and school and it wasn't until he was in year 5 that the school started to see the side of him that we see at home. He was referred to camhs at the beginning of year 6 and next week he will be starting year 8!
I was told today that he was very difficult to diagnose and he is very good at masking things. It's a relief to have an answer to why he behaves the way he does.

My DS was diagnosed with ADD at 26 after struggling through university. We were a bit shocked that we never saw the signs and weren't convinced so I started reading about ADD. I was shocked again to see myself as having many of the same traits and I've just been diagnosed at 54.

I always knew I was different but I thought it was because my mother was an alcoholic when I was a child. I now understand why I struggled through life and feel much better on medication.

DS was diagnosed on the cusp of turning 9, referred at 7 as it was being an undiagnosed very dyslexic, dyspraxic autistic child going through SATs that exceeded his coping threshold and he ended up having a few 3-4 hour meltdowns.

The dyslexia was screamingly obvious from starting school. There were signs of ASD right from late babyhood, but nothing wildly out of normal range. I suspected dyspraxia and SPD and was open minded about ASD, but it was a shock that he was given the diagnosis so readily that day. It was both a relief and a shock.

I didn’t expect so many replies

I feel better after reading all of these replies. Interestingly to all the pp’s who pointed out it was Y3/Y4 where things fell apart , this was the case for DSS and DS. Maybe I’m not a terrible mother after all

It's worth bearing in mind that, in pre it's-all-autism days, the sole diagnostic difference between Asperger's and HFA was the presence or not of a speech delay. So if your child had a speech delay, you were FAR more likely to raise concerns and have assessments and investigations occur without too much arguing, while your child is still very young. Children with no speech delay who appear to be developing in a way that's not too diverse from the usual parameters will slip through the net far more easily.

A lot of parents adjust their parenting styles for their individual children, often automatically, so they will make allowances for Bob that they wouldn't for Jack, because they are aware (maybe on a subconscious level only) that Jack will cope but Bob will not. The parents might also not be NT themselves, and the way Bob does some things reminds the parent of the way they were themselves, so it seems more "normal" to them and they don't question it.

Autism is also a developmental condition, so behaviours that the child presents with are a usual developmental stage in toddlers/young children. The expectation is that the child will progress onto the next stage, but even in NT children this is very variable. So the child has to be presenting with behaviour of a much younger child for the impairment to be picked up. The child might realise that some of their behaviours result in unpleasant consequences, so they smother that feeling and mask/pretend they are not feeling what they are. Anyone who is not looking too closely - which they might not if the child is managing - will likely miss signs that are picked up in assessment.

There are loads of reasons why it might be missed earlier, mostly down the child's hard work at trying to appear like everyone else. Often a parent has concerns but other people can't see it and dismiss them, and if they are a person with some authority such as teachers, school staff, GPs, older relatives, etc, it can be difficult to persevere. Don't be hard on yourselves.

It's your normal. You are used to the quirks
Cumulative evidence. Yes there were signs but not enough to go to the GP for a referral
The gap widens as the child gets older and peers accelerate away.
Autistic kid in autistic family may have had fewer demands to socialise.
Parents parent the child in a way that meets their needs well. Less obvious distress or difficulties.

My eldest son diagnosed at 6 and I was on the ball since he was two

Younger one? Now 11 and I’m realising that he probably is as well ... mainly because he just can’t do eye contact or communicate with people properly. As his peers become more confident and mature, it’s become more and more obvious to me

DD was diagnosed at 14 (Y9) after the wheels came off spectacularly at school. Looking at it now, the signs were always there and when I told her Y6 teacher what we now knew, he said "well, dur!" and I wanted to kill him.

Ds3 diagnosed at 9. Ds1 just being diagnosed now, at 20. Other diagnoses of ADHD, SPD, DCD and dyslexia all in the family. 3 years ago, I just had quirky children that fitted our family pattern.

I missed it until DS2 was 11. Only discovered because a teacher at his secondary thought he was autistic and he got tested.

Reasons we missed it:

He had a lot of fairly seriously physical ailments from birth that caused such concern they seemed to explain developmental delay.

DH is also autistic (didn't know that either until DS's diagnosis) so the behaviour was very normalised in our home.

He didn't present with some of the key indicators. He didn't tantrum or stim, didn't line up cars or adore Thomas the Tank. None of the cliches.

Because he never slept (never ever I still get cold sweats thinking about the sleep deprivation for his first eight years!) we were permanently exhausted and barely coping. You miss stuff when you are shattered.

He is HFA so was very good at masking.

Don't feel guilty. Remember, he's your child - exactly the same one as he was before the diagnosis. And so he is your normal. He's just himself. How could you be expected to know unless you were already an expert on ASD?

My sister was diagnosed around 16, although I vaguely remember my dad taking her to a specialist from around 14. In hindsight, the signs started to show from around 10/11, but it was put down to puberty at the time. Up until that point she was very involved with her friends, her family, evidently masking a lot of things. From 10/11 the walls went up and she stopped letting us in. She would question everything "but why am I expected to do x, y, z." I went NC with my family from when she was around 15 but I do wish I'd tried harder to see everything from her perspective then. This was around 5 years ago and she's doing great, has a really well paid job in a field she loves, but has also gone NC with the family, although she reached out to me to keep me in the loop.
Autism is varying in everyone, and can easily be missed and/or mistaken for something else.

It was so reassuring to stumble on this thread. My dd is 13 and I've just asked that she be reffered as I suspect autism and adhd. I have adhd myself which was diagnosed late. I do worry now that it is going to take at least two years to get any where, so may look into going private. I'm in South Wales, if anyone has any recommendations for private child psychologists/psychiatrists who can do assements please let me know.

I'm 41 diagnosed last year as a side effect of DS1 being recognised by school and me looking into it online.

DS1 is 8 we have our BOSA appointment on the 7th but he has been suspected as autistic for a long ass time but the opinions were split between ASD and shitty parenting/dv (Leicester is not so efficient as Tunbridge Wells in dealing with it due to resources and the prevalence of shitty parenting/dv apparently), since we moved to TW the school has been all over it within weeks and not let up on hassling CAMHS etc

DS2 is 6 and school referred him to assessment in the last week of term time.

I am likely partly to 'blame' as I am autistic and didn't recognise the differences.
I thought it was normal to feel isolated and out of the loop.

If you hassle people enough they will do their job. But you do seem to have to hassle them

Ds was diagnosed ASD age 9, looking back the signs were there but being first time parents & having no experience of autism we just thought they were part of his personality. He never mixed with other children, at preschool when they did outdoor play he spent all his time talking to old ladies who were passing through the railings. He had an obsession with buses, he knew every route in the city, collected bus timetables age 3. He spoke like an adult from being a toddler, he used long words in the correct context, everyone said he was like a little old man. He never slept a full night, even when he was a baby we were still doing night feeds & having broken nights at 18 months. He had meltdowns from being small, we just thought they were tantrums. Nobody at preschool or school ever said that they thought he could be autistic, it took me reading about it to start to think he may be, asking for a referral & speaking to the SENCO at school. The whole process took about 9 months before we got a diagnosis, he was also diagnosed with hypotonia. He is 17 now & doing his A levels, he has suffered from anxiety & depression, partly due to his autism & is under CAMHS. If you have a full diagnosis, please apply for DLA, the extra money helps because having an autistic child can be expensive, little things like ds can't tie shoelaces & walks badly means he wrecks shoes in a couple of months, when he was younger having DLA meant I could afford to give him experiences linked to his obsessions like going on a flight simulator when he was interested in planes. It also paid to repair damages when he had meltdowns & smashed things at home & to give him a bedroom that is his safe space where everything is designed to manage his sensory problems, no carpets, soft vinyl flooring, bedding that doesn't make a noise, a gaming area, shelves for his trains & planes, lighting that can be dimmed. Qualifying also means he gets a free bus pass, is allowed extra time in exams, has a quiet area he can go to at school if he suffers sensory overload.

I was diagnosed two years ago age 53, like ds I have always struggled socially, never really fitted in. I was badly bullied at school because I was different, found school & work very hard because nobody followed the social rules I followed. I managed to work as a Civil Servant for 27 years & it was only when ds was diagnosed that I began to put the pieces of the jigsaw together.

My dd has been diagnosed at 16, I work with children who have ASC and have close family who work and are very experienced in the field.Suspect it runs through the family too and there are others with a diagnosis.

I think it was our normal, my dd masking and falling apart at 15, the fact it can vary so much in individuals and us enjoying, handling and embracing differences that may well have lead to it being overlooked.

I feel a bit stupid and rationally know I shouldn’t feel bad but could kick myself at times.

@Empra123

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.

Wow this is the same for us. DD has just started the process at 16, being a twin had delayed taking things forward when younger I think.

My daughter was

It was missed in my eldest dd for a long time. My younger son was diagnosed at 3.5 years, he was much more obvious. No speech and lots of typical behaviours (having said that it was still a massive shock to me and I was in denial for a bit). With my daughter looking back there were signs but it wasn't until she hit secondary school that the wheels fell off and she wasn't coping at all. She was finally diagnosed age 13

I also think there are generations where it was missed completely. Looking back at my childhood I have definite traits of autism and have also struggled throughout life. I suspect I am autistic too but not pursued a diagnosis. My dad is also on the spectrum I feel but again no diagnosis. Looking back to my school days no one was diagnosed with autism but there are a few children I can remember who with the benefit of hindsight were autistic and treated as naughty

I guess I'm trying to say don't feel bad about it not being diagnosed until now. So many people spent their whole lives without a diagnosis until recent times. It's a positive thing that it's more recognised now and people can get the appropriate support

We thought DD2 was “abnormal”. Turns out the whole family are autistic and DD2 is the only NT one! How you define normal depends on the majority, after all.
I was diagnosed at 44, DD1 at 13. The grandparents in their 60’s.

There is a lovely book called “Why Johnny doesn’t flap”, written about a world where the majority are autistic and Johnny doesn’t fit in as he’s neurotypical.
The children in the book have to learn to be kind about Johnny’s lack of obsessive interests and stims, his unnerving eye contact, his love of surprises, loud noise and bright colours, his lack of monologues and wish for two way conversation! I’d recommend it for NT parents trying to understand their high functioning autistic children.

My daughter was 17 before it was even mentioned by a physiatrist- due to mental health issues.
The school shocked as she masked so well and she still does!

We as parents didn’t even see it or just because we just accepted as just her.
Even having our second daughter we could see difference but just assumed it due to a age gap and just very different children.

Now she makes sense and we can support her and get her the support she needs. She’s off to uni in a couple of weeks - by understanding her now we have made sure all the support is in place. Really impressed by the university support, much better than the school so far and she hasn’t even started yet!