AIBI to ask if this behaviour can be neurotypical?

[Ihaveneedofwaternear]

My DS(6) is waiting to be seen by the pediatrician due to quite severe motor and verbal tics that come and go. He's been seen before for ASD assessment when he was 4 (nursery expressed concerns about play, endless counting/lining up, lack of interest in peers etc), but he was too young to say and after he started school there were no concerns so I turned down the follow-up appointment (which I feel bad about now).

It would be CAMHS who would see him for autism diagnosis, not the paediatrician. I'm wondering if we should stay on the list for the paediatrician or go to CAHMS instead.

I'm wondering because I was saying to my friend that I don't feel like he could be autistic because I think the way he can use language/communicate isn't something a child on the autistic spectrum could do. Maybe this is a terribly old-fashioned, stereotypical way to think about it, I feel embarrassed that I might offend people by saying this, but I thought impaired social communication was a big part of the diagnosis. My friend said I should think about it the other way - are the things he does something a neurotypical child would do?

I find this really hard to judge because he is my eldest. So I'm wondering, do neurotypical kids get obsessed with one thing and talk about, do, or watch only that thing until the next thing comes along? I feel like this is actually fairly common for kids.

Example of his interests have been the alphabet, numbers (this was CONSTANT for about two years, and he's still massively into numbers), stacking cups, dominoes (lining up/building), space. It can also be watching one show/film (or even one episode of a show), and listening to the same album or song over and over. At the minute he's into Minecraft and pi. He's been writing the digits of pi out and repeating them the last few days.

Does this sound like something your neurotypical child would do, anyone got any examples of their kids behaving like this? I also think he might stim/show some sensory seeking behaviour? Can this be the case in neurotypical children? Sorry if any of this sounds really ignorant.

When I write this stuff out I know it sounds really obviously neurodivergent, but then there are so many things he can do (change routine, no massive problems with clothes or food, apart from not liking wet/mixed food, he can do imaginary play, even if he doesn't tend to).

He is quite an anxious child, which is my main concerns, and I just want to get him the right support from the right place because waiting lists are long!

So if (or more likely when) your child’s autistic needs increase, will his diagnosis paperwork reflect that? Or will he always be down as ‘Level 1 Autism’ regardless of changing needs? Sorry, as someone living in the uk we just have the diagnosis given so unsure how fluctuating needs are addressed in other countries.

Good question. I don't actually know, we are from the UK ourselves and he is my eldest and first experience with this, so I don't know if they would reassess if his needs clearly changed or if we could maybe ask for a reassessment ourselves if we notice him struggling more.

Sorry if my comments are ignorant

You have no need to apologise @Ihaveneedofwaternear
Until you need to know the nuances of Autism, then of course you wouldn't know.

From what you have described, I would continue with any opportunities you have to seek further assessment for Autism, yes.
But I would also see the Paediatrician. In my Authority it is Consultant Paediatricians that diagnose (after a multi-disciplinary assessment) and CAMHS aren't involved at all. However, is there a reason why you can't be on both waiting lists and see what happens from there ?

Your son would benefit from being assessed, even if he turns out not to be autistic, that's the as the purpose of an assessment is that a qualified person will know the traits.

Your OP and uncertainty around autism shows just how important it is that qualified people assess your son and not you deciding whether he is or isn't based off (I assume) stereotypical autistic traits.

I have two autism diagnosed children and there was not one trait they had in common, at any stage along the way. I suppose the only common thing was that they struggled or excelled in different ways to their peer group. It is so diverse, its very hard to say. I work with kids and have met many with autism and each is unique. They all have traits or behaviours that neurotypical kids have too, it's not always obvious at first.

This has all been massively helpful, thank you so much to everyone who has commented. I'm too exhausted to reply more, because I'm still trying to get DS settled for sleep, as he's very tearful about the class assembly tomorrow and the end of term. But your questions and comments have all given me a lot of food for thought. I think I'll explore whether he can be on both lists or what would be advised... PP is right, I don't need to make these decisions myself. I think I had been feeling like I had to be sure so I wasn't wasting anyone's time.

Impaired social communication is quite different from impaired language use. My DS4 has excellent language - really complex sentences, amazing vocabulary. But the way he uses language are different. In his ADOS he totally missed any prompts to ask the assessor questions about themselves and instead just responded by reeling off information. He struggles with asking adults for help because (I think) he can't appreciate they know more than him. He can recognise emotions in pictures quite readily, but he really struggles to infer how eg a character in a story might be feeling in response to events.

I can't say that your son is autistic or not, but in your position, I'd be seeking an assessment. It sounds like the tics are interfering with his daily life and ASD is one possibly cause that needs investigating.

My son was diagnosed as severely autistic with severe learning disabilities age 3, 22 years ago. At the time we were told autism was a social and communication disorder and children needed to have very significant delays and difficulties in both areas to get an autism diagnosis. This is no longer the case. Some of the things you mention can be typical behaviours too but it’s the whole picture they look at.

OP it might help you to look up the autism wheel, which shows how the severity/intensity of traits varies between different autistic people.
He does sound a lot like how my nephews autism presents.

Sorry clicked too soon. I was also going to say I have some involuntary movements which are part of my ADHD, tics in various forms can be part of ADHD, and ASD and ADHD often come as a package. Might be another one to consider. ADHD also looks very different person to person with how traits can present themselves.

Can I ask, for those of you who have/know children that present similarly to my son - what was it that prompted the process/diagnosis? Was it that your children were struggling with something? He isn't actually struggling day to day, apart from having quite high levels of anxiety at times. It was the tics that made me seek a re-referral, but they wax and wane as well.

For me I just wanted to find out so that if he was then the school would know he isn't just misbehaving, he struggles with following instructions and needs help with social interactions/how he should behave, taking turns and sharing. His preschool did agree that there might be something going on with him and supported his assessment with their evidence/experience. All our family members independently asked us if we thought he might be autistic too, and the children's nurse at his age 4 developmental review seemed to be suggesting he might not be NT.

He was diagnosed before starting reception (they start the year they turn 6 here) and the school (mainstream) has made adaptations for him and I feel like I have seen improvements in his behaviour/issues already. The younger you can get them assessed and get them support the better the outcome can be.

It was mostly the obsession with numbers that tipped family off, with the nurse he struggled to follow instructions and at preschool I think his obsessions with numbers and atypical social interactions.

He's been writing the digits of pi out and repeating them the last few days. I wouldn't say this is typical behaviour of an NT six year old.
He sounds a lot like my autistic DNeph who is now a very dry, sarcastic, funny and brilliant teenager.

He isn't actually struggling day to day, apart from having quite high levels of anxiety at times.

The fact he has high levels of anxiety (you mention he can't sleep now because of an assembly tomorrow, in an earlier post) means that his life is being impacted.
That is why I would seek a diagnosis.

Hi OP,
I sought help for my son, who is actually very good at maths too, a little bit of a human calculator, as he was very anxious about school.
When we homeschooled him during lockdown, he was much more comfortable and the quality of work he was producing was far greater than anything he'd ever done before. This was because he could work at his own pace, and he didn't have the distractions and sensory issues in the classroom that were present.

He was a very quiet boy, and flew under the radar. School thought he was quite emotional, but it was just that he didn't know how to communicate with his teachers and nobody really spotted he was struggling. By the time we'd had lockdown and it was time to go back to school. I asked for some accommodations because I'd began to recognise that he was (please no flaming for this), presenting more akin with what people see as a more female presentation of autism.

He's hyper empathetic, has a great group of friends and while primary school was an absolute binfire for him, since we've sorted accommodations at high school he is thriving.

The anxiety when younger turned into MH difficulties when teens and CAMHs suggested diagnosis.

He sounds a lot like my friends son when he was that age. He is High Functioning (very), autistic.

Thank you so much for all these real life examples. I really worry about my little boy's mental health. He's been anxious his whole life, even when he was tiny he struggled with new places, lots of people, loud noises, overwhelmed at the swimming pool etc. He copes much better these days, but still anxious a lot. He has big emotions as well, and is very anxious around pain and illness, very sensitive to things. All your examples are really helpful in making me think I'm not making up my worries!

I am high level late diagnosis autistic and adhd. I have what was previously known as Asperger's. It took double the amount of time, sessions and people (I did this privately so no nhs restrictions) to confirm both of them because my communication is on point. I mask very well. For life context I'm successful in my field, earn a high wage and use some of the typical 'traits' of autism to my advantage in my job. I'm obsessed with numbers, times - some are with letters. I am very sarcastic and 'quick witted'

Autism isn't just kids in corners not paying attention and playing with cars. Nothing new here but just highlighting that autism isn't something you can pop in a bucket and classify easily - there's so many traits across the board. Have a look at Asperger's, he may align with that.

Equally, if he neurodiverse, a diagnosis may help the anxiety. The relief I felt when I realised I just think differently and why was phenomenal and I had previously been diagnosed with depression and anxiety. Might be worth exploring, when you don't feel understood and can't explain why life can be hard