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

[SpinningTops]

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?

@Nonplusultra sounds similar to our experience. Grammar was a disaster as my ultra rule-following son couldn’t cope with the pressure piled onto their highest achievers.
sometimes I despair at meeting both his social and emotional needs. It seems impossible. But he is the kindest, most thoughtful 14 year old boy you could ever hope to meet.

Suspected about two, nursery had someone in who said ‘traits but he’s very clever so he’ll cope’. Infant school were bewildered at the idea, Junior school raised it, diagnosed at 9.

I knew from about 18 months. Hand flapping, special interests, food aversions, struggling to know appropriate social behaviour, monologues rather than conversations.

But only really picked up by one teacher, not to the one before or the one after.

I'm not sure support needs always grow. Suspect it's more that kids ger increasingky traumatised by being forced into roles they can't meet and at some point they crash or explode. If they'd had the help they needed from the start that might not have happened.

** food aversions we’re not your usual “only eats beige” they were much more focused around sauces/gravy and not eating meat.

Ds has Asperger's syndrome, no idea until he started approaching secondary school and the gap between him and his peers became more obvious. A teacher that had just been on a course picked up on it but i think it could easily have been completely missed. It certainly made sense once I read up on it though.

DS has coped really well at Secondary school and got amazing GCSE results and is on track to do really well in his A-levels - he has a lot of support with organisation from me and happily spends all his breaks and lunchtimes in the library decompressing from people.

I think high functioning is a really helpful term, unfortunately people seem to be set on misunderstanding it. It just means no intellectual disability and in no way means that no support is required. If people are using it to mean that then they are using it wrongly and they are the problem, not the term.

I wouldn't get him assessed yet OP. I would make sure you note down absolutely everything you notice and see how things progress. He's unlikely to get any help from what's you've said so I think you can afford to watch and wait.

DD2 (diagnosed) I didn't really start to suspect until her language developed (she had minimal intelligible speech until about age 5+). Once her speech intelligibility caught up a bit, you could see the rigidity, the routine-focus and the anxiety in her processing, as well as sensory issues which we'd partly chalked down to her dyspraxia diagnosis (one reason behind the speech intelligibility issue as well). Diagnosed at age 8 when we paid to go private because she masks in school and is quirky but incredibly well behaved (because she's so anxious to follow the rules and please adults).

DD1 (on the waiting list for assessment - we think ASD and ADHD) we have had suspicions about since about age 3 and no one's listened because she's incredibly verbally articulate (but when you know her and you're tuned into it there are some really subtle atypical elements to her communication - disclaimer - I'm a SALT so tend to notice more), highly intelligent - but can be very challenging behaviour wise - tests boundaries constantly so you need to be utterly on the ball with it all, and really struggles with social boundaries. It's becoming more evident as she gets older and social demands increase, but I think school only started really listening to us at about age 10 when she was struggling to fit in socially and started talking about wanting to hurt and kill herself so CAMHS early intervention team became involved but couldn't engage her in CBT because her attention was absolutely all over the place. She's now 11, coping well in secondary (I think the changes between lessons helps her regulate) and at the moment is doing well (although again, she needs cast iron boundaries and will never be an easy personality to parent - she's fab though, kind, funny, utterly intolerant of bullshit and twaddle) but I'm an adult diagnosed autistic myself and I see myself in DD1 and just the self-knowledge, ability to advocate for myself and ability to forgive younger me for things that really were not my fault at all that came from the diagnosis is why we're going down the assessment route with her (plus the knowledge that socially we're likely to hit a rough patch along the way so would like to be in the system and already waiting in advance of that).

I noticed when ds was 1 and when dd was 2

My eldest dd was diagnosed when she was 4, I knew when she was 18 months, or I knew she wasn’t NT. she was an awful baby, really unsettled all the time, never slept, had a hard time weaning her, she would gag on everything. At 2 her sleep was awful and she would make herself sick by screaming, hated being touched or even looked at, I sent her to nursery and she struggled a lot, cried all the time so I took her to the gp and we were referred for ASD assessment. She was diagnosed with Aspergers. She’s now 19 and in her 2nd year at uni.

Her sister was diagnosed at 3 with autism (high functioning) but in my eyes she is severely autistic, classed as HFA as she is good at maths and can read. She is the opposite of her sister, was a chilled out baby and slept well until she was 3 years old but was non verbal until she was 5.

I am now going through diagnosis myself at the age of 42 😬l

I have Aspergers. I was a bright child, ahead of the others, excellent vocabulary. My speech was idiosyncratic, I would use old fashioned phrases and didn’t have a strong accent. No strong obsessions. Got very anxious about being separated from parents, often didn’t want to go to school, sometimes found it overwhelming. Seemed to have friends at primary school, mostly because friendships were controlled by parents and teachers, who emphasised being kind and including everyone. But really I hovered on the edge of the group, and was tolerated rather than welcomed. My mother thought I was deaf because I got absorbed in things and didn’t hear her speaking. Apparently I didn’t sleep well as a baby. I didn’t like noise or large groups of people.

These things also describe my DS, who is also autistic. He struggles more academically than I did, and his speech tends to sound a bit American. He has stronger obsessions. He sometimes finds it difficult to change task and doesn’t like unexpected things. I have to ask him a dozen times to do anything. These differences follow the pattern in how autism presents differently in males and females.

I was about 12 before my autism became apparent. Social relationships became more complex and I couldn’t cope. Sexual interest scared me, flirting was beyond me, I couldn’t cope with large groups or new faces at secondary school. I couldn’t handle it and the other kids could, so they just excluded me. By this point friendships were no longer ruled by parents and teachers, so as soon as the other kids weren’t forced to include me, they didn’t. At this age autistic boys cope better than girls, because boys relationships are based more on activities (like football) so it’s easier to blend in. Compared to girls who are more complex socially and their friendships are based on social behaviours, so autistic girls struggle more with their peers.

In summary - your DS might manage well are primary when social relationships are simple and groups are small. But be alert for difficulties at secondary school when groups are too big and the increasingly complexity of social relationships becomes too much.

Just going through diagnosis now with DD who is 11. School are not very supportive as they say she has no support needs, but they don’t deal with the meltdown at home when it all becomes too much….

Dd was diagnosed at 2.5 years old. We had been told to prepare ourselves for a more severe outcome for want of a better description but she did finally learn to talk, she's incredibly bright (Mensa level) and musically gifted, shame about her social skills . She's an adult and semi independent though needs more input than her sister despite being older, reassurance, help with contracts etc. and cannot drive due to seizures

I’m not autistic, but I have adhd - it wasn’t diagnosed until I was 32! i don’t know why as all the signs were there

Did any of you (maybe in retrospect) see signs in the first year or two? When they were babies?

Were your children with ASC or suspected (I dislike Autism spectrum disorder and prefer the more neutral 'condition').

Our son has various SEND (dyspraxia, ADD, dyslexia and speech), and looking back to when he was a very demanding baby (think a LOT of crying and poor sleep) I do wonder if those were early indicators - maybe of neurology or sensory differences?

I also know 2 people with ASC high functioning who were both babies very similar - did not want to be put down, cried incessantly, little sleep.

DS now 13 and a delight, sleeps like a baby but lots of support needed and EHCP.

My son started reception and that was when I definitely knew. He has been on the waiting list to be diagnosed since 2018.

I've just spent 3000 pounds to have him privately diagnosed as his anxiety levels were worsening.

Despite Aspergers no longer being recognised, the consultant said that this is the sort of autism he would have been diagnosed with 20 years ago.

However, it doesn't matter what 'kind' of autism my son has though, I can see how it affects his life, he tells me how he struggles, he has a great vulnerability. He has this neuro divergence that he was born with and I think Mum's just know if something isn't quite right. Even when my husband and close family and his teachers said they didn't really think he had autism I still pushed on (with my son's consent).

Anyway, he's still on the list to be diagnosed through the local camhs 'free' service, I'm going to leave him on there (ive been advised to) and then see how long it is till he gets offered an appointment; its already been 5 years.

And did you know anyone else in the family with similar ASC traits/diagnosis?

With DS the SEND seemed to come from nowhere obvious in genetic terms.

He is actually going to genetic testing soon - paediatrician involved in speech and language recommended this via NHS - to see if there is anything joining the dots as he has so many things going on (yet is one of the most cheerful people I am honoured to know!)

Great thread @SpinningTops am learning a lot. Thanks for posting it.

From about 9 or 10 we were saying to each other "do you think she could be on the spectrum?" but she was doing well at school, had a couple of pals, great eye contact, could converse well with the grown ups in her life, so didn't worry too much about it. All fell apart when she started secondary school - panic attacks, suicidal ideation, intrusive thoughts, shut down. Got a private assessment and was diagnosed with level 2 support needs just before her 14th birthday.

In retrospect, I see how we adapted as a family to accommodate her - we would be fairly low demand anyway, she was always allowed to wear what she chose and we were delighted to encourage her reading.

The diagnosis has been life changing for her. She has the language and knowledge for why some situations feel difficult for her, and she has great self esteem. She doesn't feel the need to mask at home at all anymore, so she is spending more time with us and not hiding in her room so she feels less isolated. I am so proud of her. I know that she will face challenges (as will her NT sister) but she now has a way of advocating for herself - and knows what she is advocating for. The accommodations in school (access to a sensory room, reduced timetable, wearing noise reducing earplugs) have meant she has enthusiastically attended all term. She chats to girls at school, but doesn't have any real friends. I feel a bit sad that this isn't a part of life that she is experiencing, but she feels sorry for her sister having to tolerate all the friendship dramas and dynamics.

@SpinningTops my daughter was diagnosed at 11, waiting list since 8

At the interview they asked us parents for a lot of 'how was she at 4/5' so do keep notes as that seems to have been a key period

My son was diagnosed at 8 years old. With the benefit of hindsight i first had some concerns when he was less than a year old. Lack of eye contact and general lack of engagement with me and his dad when he was very small was the first sign. It wasn't until my second child was born that I could see more clearly that there was a difference in my first born.

The gp is the other route to diagnosis. We found school was generally quite unhelpful as they did not see the same issues at school as we had at home. Still at the age of 17 now have had issues over the years with school not taking sons diagnosis as valid. Never explicitly said but that is the feeling I get.
I set out in a letter to the GP all the reasons I thought he could be on the spectrum. The GP made the referral to consultant in the first appointment on the back of the letter

I wondered at 2 when she refused to wear anything with buttons. Carried on wondering on and off. Got more concerned. School refusal a bit in y6 and after lockdown.

Passed GCSE, diagnosed in the November after them, fell apart during A levels in Y12.Now out of school in burnout whilst the horrific never ending fight for an EHCP goes on.

Get diagnosis and EHCP asap. It gets harder as they get older.

Referred Yr 1 (by school) diagnoses Yr 4

I first suspected my child had ASD when he started primary school and I could see he struggled to build relationships with the other children and found certain aspects of school life very difficult. I asked school to refer him for assessment but they claimed he showed no signs as he was very academic and top of the class and it wasn't until the end of year 5 that they agreed to refer him.

He was assessed to be on the spectrum and it was very useful to have the diagnosis as his transfer to secondary school was disastrous (very common scenario for ASD children). It meant we could put support in place quickly that wouldn't have been available without the diagnosis.