Autism diagnosis non disruptive child

[Exactfare]

Ive always had suspicions about my 8 year old but no one else could see it. Since the beginning of year 3 some of his "quirks" are starting to look more and more like "traits" and his teacher thinks we should have a chat with the SENCO

He's really really been struggling with anxiety and the social side of things, I'm not sure it's enough to warrant a diagnosis yet but he needs support (school are putting somethings in place)

Really interested on hearing experiences of parents of autistic children who are having the anxiety/ social problems but no disruptive issues in class, meltdowns etc (stuff that gets identified easier)

My DS has just been diagnosed autistic at the age of 17. We suspected it from toddler but because he was never disruptive in school they never pushed for him to be diagnosed. It was only following mental health issues, a common thing with autism, that we asked that he be assessed alongside receiving psychotherapy from Camhs.

My advice to you would be to get the ball rolling, see your gp about a referral. A proper diagnosis will open so many doors for your son, now and in the future. I wish we'd done it earlier, but it's all worked out ok in the end for us.

Get it started now. We, like you, had the first twitches in Y3, but it took until Y5 before ds was referred for assessment, and he did not get his diagnosis until Y7.

With hindsight, those first twitches were massive red flags. The only thing that was missing was ds being disruptive.

Thanks guys

What signs did you have? For us it's
-anxiety

• trouble sleeping
• noise sensitivity
• difficulties making friends (teacher thinks he's over whelmed in the playground)

- obsessive special interest

• when he's home re runs up and down bouncing off furniture totally lost in his own head

And a few other things

DS diagnosed just before secondary school. Never ever a problem at school, always a high achiever.

I think it's worth thinking about his communication skills. Does he talk over people or talk at people. Does he stand too close to people? Will he talk about his obsessive interest to anyone who will listen and not notice if they are interested or not? Is he very literal? Does he do things like explain jokes or not get it when people are being sarcastic? Does he talk to himself? Does he repeat phrases he likes the sound of?

Is his thinking very black and white? How is he with transitions and change? Is he still interested in things that his peers have grown out of? DS had a lot of these but others not at all so it does vary a lot. Does your DS put his hands over his ears? That was one of the things that was picked up for mine.

Speak to the SENCO and take it from there. They might get someone in to observe your ds which we found really helpful and helped with getting a diagnosis.

Yes, just like mine. Signs from about age 2, diagnosed age 7, never been in trouble of any description (now a young adult).

Same for mine. School won't help because she's not disruptive. I can't help but feel this is somewhat unfair.

Meltdowns are an outward expression of stress and commonly associated with autism. Shutdowns are an inward expression of stress and much harder to spot but autistic children without outwardly challenging behaviour often internalise it and shutdown instead.

DDs quirks didn't become a issue until she started secondary school and struggled with the environment. She has never, ever shown any sort of challenging behaviour, not even tantrums as a young child which is unusual in itself. She received her diagnosis in year 8.

I should point out I went for a private diagnosis having started saving a few years before incase her quirks were actually something more. She would have never met the NHS bar here as her autism isn't a issue for anyone else - just her, plus it's a 4 year wait and I wasn't waiting.

Lots of subtle signs with my DS. Obsessive interests, never really having a conversation (it's more like he just dumps all his factual knowledge onto you, with no real reciprocal language), seeing things very black and white, never really having strong emotions (never super happy or super sad), monotone voice. He started having intrusive thoughts 18 months ago, some were very concerning, and he had psychotherapy for this. One of the main issues he had was the struggle to have strong friendships. He had many friends, but they never went deep. He never wanted to see them outside of school or text them. It was all surface level stuff. He ended up quite lonely until school intervened and found him a tribe he could feel he belonged to (interestingly it is a group of autistic/lgbtq+ kids who have accepted him with open arms).

The process from first referral (and acceptance on the pathway) to diagnosis was 16 months in total. I think we were very lucky for it to be that quick tbh.

I always knew in my gut that there was 'something' but didn't want to upset him by suggesting it and with no school staff noticing, we continued in ignorance. But, now he has a diagnosis he is learning and understanding himself more.

Good luck with your ds.

It might be worth having a look at the Girls Autistic Network website. I don't really think there is male and female autism, I think it's more like it's a blatant and physical autism Vs quiet and subtle autism instead. You may find your son ticks more of the 'girls' subtle traits than the traditional 'boys' traits

@Puppupandaway yes to lots of this, although he's a very sensitive emotional kid - cried during "encanto" for example. Often wants to walk away from a TV show or movie if it's getting to much

I actually feel relieved his teacher has spotted something

@Singleandproud did school accept and act on a private diagnosis? What was the route? Would an earlier diagnosis have been helpful?

Your DS sounds very like my son. Absolutely amazing little guy never any bother at all. No meltdowns at all. He was diagnosed at 5 just as he started school but we had it flagged for a while beforehand . He was completely disinterested in participating in any activities in school and very poor social skills.

My DD was recently diagnosed at 15. Sounds like so many on this thread: quiet and very well-behaved at school, often described as a joy to teach etc etc. But high school brought out the anxiety big time, and now she’s so painfully shy it’s much more of a problem.
I would encourage you to go for diagnosis asap - I wish we’d known much earlier so we could have got her diagnosed before things got bad.

My son’s adhd causes disruption, his ASD is more internal. If he didn’t have adhd he wouldn’t have flagged for years, the diagnostic assessment showed that the experts could easily see what school couldn’t.

I think my DS is mildly autistic with traits many of you are describing. He's a young adult now and I wish I had got him assessed when he was at secondary school, which is when some social difficulties began.

DD just turned 16 when we got her diagnosis. A lot similar to what you see.

We did a private one, waiting list on the NHS is a18-24 months for the initial assessment and no one knows how long until the test itself. Luckily my work's private insurance covered it but we are would have paid.
From initial assessment to diagnosis = 4 months

School didn't blink about the diagnosis being private, I think the backlog on the NHS is too large for them to make a fuss, very different to when we looked 9 years ago (history of missed sign after missed sign) and were told a private one wouldn't do us any good.

Ds self diagnosed himself at 13. We really didn’t understand why a formal diagnosis was necessary for him and how much of his needs he was masking until he ended up at crisis point under CAMHS and met an awesome clinician who realised the cause of his problems and got him on the diagnosis pathway.
DD is completely different but we understood a lot more about autism by then and her diagnosis has been equally important to her.
Neither have obvious disruptive signs in school. However both get far more from school with their autism understood, accepted and supported.
If you suspect, I would always recommend getting it properly assessed. How much they are impacted by their autism shouldn’t be defined by how much others needing a negative experience of their autism, which sadly seems to be how schools determine who needs the help.

We had first signs at 2, nursery had an assessment put in place and we were told ‘traits but he’s clever so he’ll cope’. By Y3 school suggested getting a diagnosis due to social skills issues (he’s described as a model pupil and is flying academically). We went private and school were very happy to accept the diagnosis. They’d already put in most of the recommended adjustments and I genuinely can’t fault their approach. They’ve also offered to talk to his secondary school once we know which that is.

I was keen because I wanted him to understand himself and because I wanted protection from people complaining about his quirks.

Both my kids have autism and they were almost spookily well behaved in school. They understand rules, love order and predictability, and hate conflict. Any meltdowns took the form of getting weepy or freezing up.

Autism can manifest in different ways, and it's easy for the teacher to overlook the quiet ones.

Start the ball rolling now. The older he gets the more challenging getting any help is. Things could be put in place ready for when he starts secondary school.

@Exactfare Crucially at the time I was a teaching at a local secondary school and made this known, whether or not it gave my requests extra clout I don't know but knowing what to ask for in adjustments was useful

When DD first started Highschool, she got really ill with COVID the second week (treat at home I'll not hospital ill) and it was hard to work out whether her initial struggles with the school environment were because it was secondary school, she was recovering from COVID or something more. I contacted school, Sendco was on maternity got directed to a family support work who observed her and said "she's fine" and then rarely replied to emails and left the school apparently with no notice to them.

Things took a nose dive in year 8 and DD thought she was losing her mind, she took the online AQ test which came back as high for autism, she was aware of autism before hand. At that point I made contact with the private clinic, filled in their online form, notified school of what her struggles were and what adjustments I wanted put in place to support her (got put in touch with a fabulous TA who has been incredibly helpful). Within 6 weeks I'd done an initial consultation to see whether pursuing the full assessment was appropriate, completed the Developmental history and completed the ADOS and had her report. It was a 4 year wait on the NHS and she wouldn't have hit their bar anyway. Also with the private diagnosis they did cognitive tests too where DD scored higher than anyone the clinic had ever tested on some elements and it turns out DD her exceptional academic ability had been hiding her disability in her younger years

School accepted the report with no issue and although they hadn't noticed any signs before, once they knew how it presented in her they did - and then she developed motor tics which are pretty obvious

I did not go through the GP at all, just emailed the report through once I received it and it's been added to her file.

I don't know that a earlier diagnosis would have helped she thrived at Primary and loved Home School during COVID her quirks could always be put down as being an only child, but not getting messed about by the family support worker in yr7 would have done and I couldn't afford to go private in yr7 anyway I had to save.

Just an update, I had a meeting with his teacher and the SENCO - they are very supportive. Going to look at external observation next year

Interesting the SENCO said they are seeing more and more boys with the quite less obvious *female" type autism

Mother of a dd with asc. Lots of people with autism are incredibly empathetic and then struggle with emotional regulation. Such a misunderstanding that they are unemotional and unempathetic.