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?

I think there are better terms than 'high functioning'.

The problem with that term is that it implies a more NT level of functioning across all areas of development - social/emotional as well as cognitive, whereas in fact it only fully relates to academic performance.

'High academic functioning' might express the position better, though given the amount of unofficial support usually required at home in the area of executive functioning to facilitate academic performance, even that doesn't really hit the spot. High academic functioning does have the advantage of implying that there is more to functioning than working at expected academic level or above.

'High functioning' ( and 'high academic functioning') are in the end terms that primarily refer to the child in his or her capacity as a student, with the totality of the child's experience of the world and of him or herself not really taken into account.

I think terms like that lay bare the sausage factory aspect of formal/ school education.

I didn’t see anything that stood out to me, or to anyone else (with hindsight I can though) until my DD was 6.

She was diagnosed at 8. I still seemed to be the only one who could really see it though, apart from professionals or parents of other autistic girls.

Now, at 10, it is sometimes much more obvious. She doesn’t attend school anymore as she can’t cope with the overload there.

Thanks everyone for sharing, it’s so interesting picking out the common threads in these stories.

DS1 diagnosed at 7, now nearly 11. Also has ADHD (medicated). Very academically able but I suspect processing is slow (beautiful presentation/handwriting so that his work gets praised, but he struggles to do it in a timely manner). I probably knew from extremely early days: he was hyperlexic and hyperactive as a pre-schooler, and used very advanced language (copying things he heard adults say, I guess). Beautiful singing voice and almost certainly has perfect pitch. Very sociable but obviously a bit off the wall for most people’s tastes adored by adults.

I am definitely autistic too, I just haven’t pursued a diagnosis. DS2 and DH probably also autistic.

You’ve made some good points but ugh, doesn’t it make you wonder why Asperger’s was taken out of the DSM? Having every aspect of the autistic presentation filed under “autism spectrum disorder” inevitably leads people to make clarifications like “high functioning”.

I know why Asperger’s was considered problematic (not just Hans Asperger himself but the idea of “aspie privilege”) but sometimes you just need to be more specific than “autism” don’t you?

About 7 or 8.

Did any of you (maybe in retrospect) see signs in the first year or two? When they were babies?
DS was very clingy, cried a lot, never smiled and didn’t sleep. He wasn’t late with walking and talking, but there was (and still is) a marked lack of eye contact. By toddler age it was apparent that he didn’t listen or take notice of anything I was saying. According to my mother that’s exactly what I was like too - except she didn’t realise her child had autism.

sometimes you just need to be more specific than “autism” don’t you?
I find it really difficult to describe myself now that the Asperger label has been taken away. I’m a mum who has degrees and runs a business - I’m clearly not the same as someone who’s non verbal and can’t use the toilet independently.

DSS around 9, but looking back there were signs from early childhood.

DD2, was concerned from age 3/4 but brushed it off until issues at school around age 10.

DD1 I noticed a few traits at primary age but it didn't become obvious until she developed terrible school-based anxiety at about age 12.

One of the issues I've had is that I found nobody takes you seriously until they are having problems at school too.

For DD2 I noticed traits at age 2/3 but simply put it down to separation anxiety. When she got to school they wrote her off as just a naughty child because she was often so dysregulated. She finally got diagnosed last month as ASD/ADHD aged 9.

Dd 1 who’s 12 on the other hand is proving tricky. I have seen it at home for quite some time now, sensory issues and AFRID and to me she’s clearly ASD. However they haven’t noticed at school as she’s typically very happy/compliant, she’s not one to bring attention to herself. So it’ll be a case of waiting until life becomes completely unmanageable for her in a few years, before I’m forced to revisit getting her a diagnosis. Which is a big worry because who in their right mind wants their child to have a MH crisis before offering support?! But it seems that they still heavily rely on information from school in order to diagnose despite there being glaringly obvious traits at home.

One of the issues I've had is that I found nobody takes you seriously until they are having problems at school too.

And even when they do notice issues. Parental blame is rife. Traumatised just thinking about what a shit show the last 5 years have been both for DD1 and I!

My son has just been diagnosed at 13. I saw signs of ‘something’ from quite young and his pre-school flagged it up. He went to a tiny primary and they were able to meet his needs and understood his differences so it wasn’t really investigated.
He started secondary and it all fell apart - he ended up having burn out/break down in February and hasn’t attended school full time since. The fact he appeared to not need much support meant he was masking and struggling just to give the impression he was ok.
If I could give any advice it is to go with your gut, start the process and be ready to have to advocate for your child throughout their life. Waiting times are huge at the moment. Due to his age I found the money to go private.
Also the transition to secondary coupled with hormones can really heighten their needs - so how they are younger isn’t a reliable marker of how they will be in their teens.

It seems to me that how quickly it is picked up and diagnosed is largely dependent on how disruptive or not your child is in school. My DD was pushed for assessment because she was very disruptive, having meltdowns over things (although very capable academically). I think she was diagnosed at about 5/6. But others I know have older kids they have been trying to get assessed and but without the urgency from school, it doesn't seem to happen.

Age 2 but she has a severely autistic brother so she has been analysed since birth.

We first suspected autism/aspergers in DS when he was around 3, raised it with the Health Visitor and had him assessed. They said that he didn't meet the threshold at that time but that he may well do later on in life. Fast forward to now, he's just turned 11 and we're going through the assessment process again after school suggested it. He is very able academically but struggles socially and as he gets older he definitely needs more support for SEMH things. I'm hoping we have a diagnosis before he gets to high school but I'm not holding my breath!

We suspected something “wasn’t right” at reception age - brushed off by teacher.
Y1 - there’s something not quite right
Y2 - we want to get her assessed but we don’t think there’s a particular issue.
Y3 - Term 1 - went to school but sat in corridor. T2 - (lockdown) living her best life! & Formal diagnosis. T3 - we think she might need an EHCP.
Y4 - excellent ASD friendly teacher. Spent time in the classroom but was also excluded for “assaulting a teacher and two children”.
Y5 - stayed in classroom consistently and even completed work in T3.
Y6 - rocky start but her teacher is understanding.
Now we have the rollercoaster that is applying for secondary.

My advice would be to push hard and fast to get him diagnosed as reception will be ok but you’ll need support after that. Good luck x

For those of you who say your DC were diagnosed, how did you go about it? My son is your archetypal AS child and I've known it since he was tiny (he's 5 now). We've just been for an assessment where they used the ADOS2 on him and because of his language fluency, they refused to diagnose him. Told me to come back in the future if his behaviour or MH suffered. I've tried appealing but they just don't want to know.

I should say, the Paediatrician referred back to school reports and said because DS's behaviour isn't a concern, they can't do anything u til it is. But what they don't see is the restraint collapse when he gets home and the near constant meltdowns. I feel at such a loss.

DD6 has Just had a diagnosis of what was previously Asperger's, school wouldn't have referred as didn't see any reason to, very academic, good socially, polite etc. completely different at home, we went private.

DS was 10 when diagnosed.

I think the lockdowns brought things to a head and he might have been able to, appearance wise at least, cope until the move to secondary. But I'd had concerns about how he was doing socially since he was in reception, although the school had insisted everything was fine. Before that I'd noticed some sensory issues, he definitely had special interests, but DS is also very like me in many ways so I missed things.

School didn't realise until DS was rapidly approaching crisis point and we contacted them about his behaviour at home. After a meeting with us they agreed to making the referral, shortly after DS started refusing to go to school.

Definitely true and a common misconception. Often support is needed especially with transitions, starting & stopping activities, understanding events in different parts of the day, meals, taking turns. In academics answering higher order questions related to text is a common difficulty that benefits from work on reading skills rather than decoding tasks and problem solving in maths work. Hyperlexia is worth finding out about but there is loads you can do to avoid pitfalls if your child is ASD to support them. They sound to be getting on really well.

@flappysam

That’s so weird. My daughter was a model kid at school and still got diagnosed. Her use of quite sophisticated language was mentioned in the report (to support what would have been an Asperger’s profile). However she was 9, and I know the ADOS tests differ according to the age of the person 🤷‍♀️

Just goes to show how inconsistent the system is, and probably how the personal prejudices of professionals actively prevents kids from being diagnosed.

Do they have targets to hit, do you suppose? Can’t be diagnosing too many kids, might have to actually spend money on them…

Edit: sorry @sadsedum I quoted your post by mistake!

My susispisions was always on autism, I didn't ever quantify the severity.

I have a son with severe and complex needs, I have a very clever confident outgoing girl with a higher than adverage IQ. I knew with both, at 18 months. My eldest son, my second son and my dd all got exactly the same scores on the DSM5 right on the cut off. Only my dd was diagnosed with ASD. My complex needs son didn't have a diagnostic test. He ticked all the boxes. Diagnosed at just turned 3

In my case it was my third child with SEN so I was looking, she got into the system very young. Then a catalyst ( lockdown) and she went from modle reception child to utter nightmare. Normally you see that at puberty. She was diagnosed at 6. If she was my only child, she eould never be diagnosed ( unless she started to school refuse as from my experience that's common)

But autism is autism. No one likes high functioning as it implies everyone else is low functioning. My son with severe and complex needs has a normal IQ and low functioning doesnt fit him. He could cook at 9 independently on a gas oven. Yet you'd be hard pushed to find a child with more severe needs.

You couldn't tell my son and daughter have the same diagnosis. They are poles apart. My dd has epic meltdowns. She is very eloquent. My son diagnosed at 3 has never once had a meltdown ever. He was completely non verbal until 7.

I knew DS had ADHD when he began to show signs of reading at 18 months. Being read to is and always has been his special interest, he loves it, and would memorise stories then read them out loud while scrutunising the words and sounds. At 2.5 he could fully decode most words. I have severe ADHD and Dyslexia and this is exactly how I learned to read and speak in 4 different languages (lol I picked up Korean after an intense obsession with K-drama and became an advanced level speaker very quickly due to the links to Sanskrit and Simplified Chinese)

That’s hyperlexia! More associated with autism than ADHD, but lots of ADHDers are undiagnosed autistic (and vice versa). I think there’s different sides of the same condition but that’s another story.

12. I was told by his secondary school who diagnosed it almost immediately. I was in shock and didn't believe it but the school organised extensive tests and i was amazed at how much evidence there was from babyhood 9severe gastric reflux, inability to learn to crawl, slow milestones, inability to follow metaphorical commands such as 'get your skates on' meaning 'hurry up' etc.

It was very useful to get the diagnosis and while it upset him badly for a short time, long term, he's far better off knowing. At home, at school and he on his own as he got older, did a huge amount of work on social skills so he now socialises very easily without masking too much as the skills are so ingrained they take less effort.

Overall, in our experience a diagnosis is so beneficial. I wish we'd realised earlier, but both DH and I are neurodiverse so we don't notice diversity or see it as an issue, when clearly it was for him throughout primary.