What age did you suspect your child had 'high functioning' autism

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Posting here as little traffic on SN chat.
I know Asperger's isn't a used term now but that's kind of the level I'm talking about - autism which needs little external support. Is this often missed until older? When is it picked up by people other than the mum?

DS is just about to turn 5, I see various signs but I seem to be the only one. He's a clever little boy, probably a year ahead in reading and maths without any pushing from us. He struggles with lack of certainty, making decisions, time (is anxious about how long everything takes), has word final disfluency and uses very grown up language and old fashioned phrases. No specific special interests (enjoys board games, Lego and STEM activity sets), seems to have friends.

School are not worried, DH doesn't see it, grandparents don't see it.

Is high functioning autism often missed until they get older?

Absolutely, yes. My eldest was diagnosed at 14. My youngest was diagnosed at 17. Both would have benefitted from earlier diagnoses.

A neighbour attended a course run by the NAS for parents of newly diagnosed children. She said all the parents of children with what used to be called Aspergers had older children.

And be careful of assuming little external support is needed. It always is, in my experience, especially at secondary school.

Yes, I could see the signs from about age 1 (luckily nursery picked up on it too and put in support). Diagnosed with AS aged 7. Also dyspraxia and language impairment. It is very commonly missed till much later in life.

And yes to significant amounts of support needed despite intellectual ability. I had to fight for an EHCP by late primary age before transfer to secondary (which was a special school). He's at university and doing well now.

Diagnosed at 17, took 3 years. But yes suspected at about 2. However very clearly could have told as a baby after having 2 more non-Sen Dc

The important reason why the terminology changed is because it's really unhelpful to get into the mindset of there being a type of Autism that needs very little support. Your child's support needs will vary significantly over the years but thr Autism will always be there. At age 5 my DCs needs were not too far off the average range for any random bunch of 30 similar age kids and school didn't need to make many adjustments. It wasn't until year 5 that the differences between my DCs needs and the "standard package" became sufficiently apparent that the SENCO got involved. Now in y10 the needs are much more significant.

I watched a contemporary in my own school as a teenager have a total breakdown in y11 having had a diagnosis of Aspergers but therefore understood as being "high functioning" and therefore deemed fully able to cope in a mainstream environment without adjustments. That is a dangerous attitude to take. Support needs are likely to grow.

Our DD was 15 when she got a diagnosis. As she's got older she's found it harder and harder to mask. We didn't really think of it until about 13 and teachers didn't think she was autistic but it has become more obvious.

I had no suspicisons until about 6 months ago

Now so much seems like big red flags.

DS was 7 last month

starting to talk to school

School mentioned it at 6. He is 11 and still not diagnosed though…

3 and 16.

It became apparent with my son around 6/7.

We had the opposite problem most people seem to encounter. At home he was fine. It was in school and out of the home he struggled. But looking back, we were more attuned to his needs, what would result in a meltdown and took steps to actively avoid one. At school he had regular meltdowns caused by changes in routine and being overwhelmed by work etc. He also really struggled socially.

In year 2, he had the same teacher that he had in reception. She mentioned that he was displaying these same behaviours that she would have expected him to have outgrown by that age. She made the referral. This coincided with lockdown. Having to homeschool him made me see a completely different side to him I had never seen at home.

He was diagnosed at 8. He needs little support in primary currently. Having a diagnosis has allowed him an easy way of articulating his difficulties in a way people quickly and easily understand. Allowances are also made for him and the teachers understand his needs better now. He starts high school next year and I am expecting that this will be where he struggles.

Yes, my daughter. She's 9 now but I've known from about 3 years old. She sounds very similar to your son.
I've raised it with the school multiple times but been told there's nothing wrong and offer no support. There is no behaviour or learning issues at school.
I know as she gets older, things will become harder as I can already see it starting.

I think I always knew there was something. She was slow to progress in all areas of development, but particularly physical and social. She was diagnosed with global development delay at 4 and potential sensory processing disorder. She got her autism diagnosis just after she turned 9.
I think what can be described as young kids developing at different rates, becomes more obvious as they get older and your expectations for them get higher. For example, not interacting with other children and forming friendships at 4 may be seen as slightly behind in terms of social development, but by 9, it becomes apparent that there's another issue. In my experience, I feel that they tried to go down loads of other avenues before they looked at ASD because they want the diagnosis to be accurate.

I had concerns at 2/3 with DS, he’s just been diagnosed this year aged 5. The pediatrician said that ten years ago we’d have called it classic Asperger’s, he is very able and inquisitive, very routine driven but does have some meltdowns and needs support at school. Preschool flagged issues at age 3 around the time I got really concerned as his speech went quite flat and we saw a bit of flapping / jumping about when excited or stressed etc. I think his speech impediment helped others see it, I suspect with a normal speech pattern it would have been less apparent to others.

I have concerns about DD who is 7, she’s quite socially awkward and there are a few signs (fussy eater, sensory issues with clothes etc). I’m going to mention to her teacher - the former SENCO who held my hand through DS’s diagnosis - as I’d welcome her opinion, but I suspect she’ll say she has no concerns. I think my approach is to watch and wait, but any issues I will push for SEN register, support, right to choose pathway for diagnosis ASAP etc. I know as a teacher that with a lot of girls they’re fine at primary and then the wheels fall off with the jump to secondary school.

Thanks, I might contact school and lay out my concerns.

Apologies about the terms I used if they are not helpful to use. I was trying to distinguish between the needs but can see that support needs may vary with age.
We have an autistic family member who needs a lot more support from an early age where autism was perhaps more obvious from early on.

School are not worried, DH doesn't see it, grandparents don't see it.

Is high functioning autism often missed until they get older?

Absolutely it is. Sometimes it’s missed completely, and the person themselves doesn’t join the dots until after their own kids are diagnosed.

My daughter was diagnosed at 9. School didn’t see it. No family members could see it. My husband could see it but felt she would be better off staying undiagnosed and masking.

I ignored everyone and went through the process alone.

Not my child but me. I first suspected when I was 61. Apparently my family have thought so for quite some time.... I wish they had let me know!

DD1 I thought there was something at 2, but nursery said no and raised with primary school in year 2 but teacher was dismissive as she was ‘no trouble in class’ Year 5 got some traction from the SENCO. She was finally diagnosed at 13. School have been hit and miss with support as she is typically masking hard but it all comes out at home. I think GCSEs are going to be very hard for her. She is very bright and able but very easily overwhelmed I.e. with too much homework, she struggles to organise herself. Doesn’t know her left from right and is hugely clumsy. The diagnosis has given her language to talk about her needs and reassurance that she isn’t ‘weird’ just has different needs to others

Age 9 and I would agree that dd needs more support at school than i envisaged. Unfortunately high functioning hasn't meant she can necessarily cope without it.

We had no idea until DS started secondary last year - still not diagnosed. School called us in within the first month and told us they'd talked to the primary school, who had had suspicions, but not mentioned them to us.

Looking back, we can see signs now, but quite subtle ones - little pain sensitivity, limited diet, key interests. He's always made friends, but struggled somewhat in larger groups.

The key is to get diagnosed as everyone has said...

It seems like every mum on MN claims their child is on the spectrum, when in fact their child is just being a child and they've had a few days they can't manage... just like how every woman and their cat claim they have OCD when all they do is just liking things done a certain way.

Well this is exactly what I don't want to be. Which is what holds me back.

DH just says I want to label him.

But then on the other hand we don't do long journeys / go on holiday because he can't cope with it. A lot of our plans revolve around whether he will cope with the situation.

Yes, my daughter diagnosed at 8, we had suspicions since 4 but neither nursery or school could see it (though Y1/Y2 teacher mentioned her emotional dysregulation, YR teacher mentioned her strong sense of justice, Y3 teacher noticed she struggled with teamwork and she was getting upset a lot in class...but no, no problems here!) She is high achieving academically and well behaved, so it is not a problem for school. You know your child best. For us it was that she was very much more challenging to manage than her peers, 'normal' parenting techniques didn't work. She had/has meltdowns, sensory issues with clothes, fussy eating, hyperlexia, never stopped moving or talking, did not cope well with change or transitions. No one else could really see it apart from us. But it was very clear in the assessment. She is now in Y4 and not getting much extra support in school, still having a lot of meltdowns at home. I keep pushing but unless they are struggling academically or behaviourally (in school) the school doesn't want to know - not enough resources.

DS saw a psych when age 9 to deal with school refusal. Psych report pointed to 'possible aspergers' (his word not mine).

We didn't push it any further, school helped the school refusal with pastoral. Support and then lockdown etc.

When he started secondary school (private) we were called in after 4 months and his head of house and form tutor gently suggested he ought to be assessed as he was displaying signs of autism.

We were lucky and our private health care covered the assessment, so he was done within the month and autism diagnosed.

He is socially autistic plus has sen, but is in mainstream school.

The diagnosis was THE best thing. He now explains all his strange little foibles away. He spent years asking why he wasn't like his friends. He now aligns himself with successful autistic people and does so proudly.

We suspected something was going on earlier this year with our 10yr old due to some sensory issues, and she had a pre assessment at a private clinic with two separate professionals. They spoke to her at length and we also completed background questionnaires. They did not feel there was evidence to support starting an ASD assessment, saying they observed she had a good level of social skills and she picked up on a number of social cues and nuances. They also said there was no evidence of any restricted or repetitive patterns or behaviour or interests/activities which would need to be evident and pervasive for a diagnosis.

They felt her issues were anxiety related. I think it could well be anxiety, or I also think it could be ASD but she is flying under radar at the moment as many girls do, and it may become more apparent in teen years. None of her schools or nurseries have had any concerns but did recognise she has a sensitive nature.