Atypical ASD?

[Mimithecat]

I posted this on the SEN board as well, sorry it's a long post.

DD (5) in Reception is generally a very happy child. She is social, adapted very well to her nurseries, started at age 2 and didn't need any settling. Same with school. Loves learning (top reading group in her class, having not read before starting school), very well behaved, very kind, empathetic etc.

She had a very typical development, hit all the milestones on time and was quite an early talker with very clear speech and great vocabulary. Potty trained very quickly at 2.5 yo. Great eye contact, she was smiling and waving at strangers since she was a baby.

She never meltdowns (last meltdown was probably when she was just about 2 yo), just the odd emotional outburst which lasts a few mins, then she is happy again.

She doesn't seem rigid in her behaviour, usually when we have playdates she is always the easy going one and we tend to follow the other child's lead.

However, since the age of about 3 she is flapping her hands a lot, usually when she's excited or thinks about something, followed by strange grimaces. I thought she was only doing this at home, turns out she is doing it at school a lot and the teachers are not sure what it is.

Another thing is she is sensitive to noises, but not all noises. Usually toilet related, toilet flusher, sometimes hand drier. This again started around the age of 3 and is getting worse. She is fine in crowded places, noisy soft plays.

She is a bit in her own little world with an amazing imagination and all sorts of stories come out and her friends look at her like she is a bit odd. She talks obsessively about her cat (occasionally talking like a cat) and she does tend to get obsessive about things for a while...then she moves on.

We are moving her to a private prep school (less children and less noise in the class room), however on her taster day the school has picked up on these unusual behaviours (hand flapping, covering her ears in the toilet, talking like a cat). I'm quite nervous now about how she is going to 'present' herself at the new school and whether we need to look into some sort of support?!

I should mention I did speak to a pediatrician about it (informally), someone we know and she knows DD and she said because she's not struggling in general, she seems to make friends, she is learning, she is adjusting well to new situations, she doesn't need special support, then pursuing a diagnosis will not achieve anything.

But I'm a bit worried about her little obsessions and her hand flapping and that she'll get picked on when she older.

Can anyone relate to this? I've read a few threads on atypical ASD but none of the kids seems to be similar to DD, they tend to have more obvious ASD traits.

@Mimithecat I used the term atypical as we do know other girls of the same age who show very clear signs of ND: meltdowns, severe sensory issues, very rigid in their behaviour. One of them couldn't quite settle into a mainstream school and has been put into a Steiner Kindergarten. None of them flap their hands like DD though.

This is what the pediatrician has implied.

The never needing settling at nursery is something I saw in my son. He was diagnosed at 9.

It was only in later primary he started being able to communicate stuff that you'd think you'd pick up on by a child's body language - feeling unwell or cold for example. I think with hindsight the ease of settling should have rung an alarm bell that he was under-reacting to the separation. But this is just one child, they are all different.

I have 3 kids who are all neuro atypical, it is likely I have ADHD and DH Asperger's. I can see classic ADHD traits in my dad, and one of my brother's who was dyspraxic as a child has 4 boys,2 of whom have always been hand flappers. Neither ever assessed or diagnosed with anything and both doing well. I have concluded that our family are just neuro atypical all round.
My kids did not want assessing at secondary age but oldest hit a levels and lockdown at same time and it became very clear she had ADHD which was then diagnosed too late for support with A levels. She then had to take a year out and get some experience to get onto a Uni course and it's now struggling with acedemic side of that. I wish she had been diagnosed sooner and had more support in place. Now trying to decide what to do with youngest at 16 who excels academically but has no girlfriends at college and is likely autistic with ADHD but not sure she wants to know. It is really hard to know what to do for the best.

At 9 my dd started crawling under her desk at school and refusing to come out. On “better” days she would burst into tears the second we got home.

get help sooner than later.

It isn’t anything shameful or to avoid. There are plenty of successful women like me who are on the spectrum. The difference for our dd is that they don’t have to struggle and figure things out by themselves. They have love and support and intervention when needed. Time will tell, but I do think it is making a difference.

If she's happy and not having any specific problems, then I'd be cautious. Autism feels heavily marketed at the moment.

Lots of kids hate hand dryers as they are, objectively, loud and alarming. Cats are fascinating and hilarious. It might overlap with published ASD symptoms but I wouldn't say there was anything disorderly about this if she's 5.

Didn't we all struggle in teenage years, whether ND or NT?!

It was the pediatrician view as well that loads of 5 year olds have their little quirks. But keeping an eye on it of course.

Sounds like she's just finding ways to regulate. Flapping hands as a, way of stimming is common and so is having some sensory sentivities. Ear defenders might help. You say the reaction to noises are often toilet related, driers etc. Maybe it's linked to being aware that the toilet is a place of privacy, needing the toilet makes you feel a bit vulnerable anyway so noises sound louder, toilets are echo chambers anyway. It sounds like she has some quite sophisticated ways of managing emotional/environmental information. The speaking like a cat or as a cat is something I've come across often, then grown out of in time. Often children adapt their own strategies as they get older and parents support them. Your DC sounds happy and well adjusted.

My dd did all this. Smiled early, talked early, sociable, friendly.

Distressed by noise. Hated change. Diagnosed at 16. Girls present differently. The sensory issues have really ranked up in 6th form.

"she said because she's not struggling in general, she seems to make friends, she is learning, she is adjusting well to new situations, she doesn't need special support, then pursuing a diagnosis will not achieve anything."

Not rtft but came on to strongly disagree with this. Getting a diagnosis can take a few years. And support needs can change in the meantime. It's common for kids to manage at primary school and then struggle as social demands increase in secondary.
There's a big advantage to having the diagnosis in place before the support needs become apparent.

This was my daughter.

She's now a teenager with meant health issues and anxiety and related to not being diagnosed. The change was so sudden when she started secondary school, she went from being fine to not coping. I'd consider getting her seen as early as possible if I were you

Joining the thread, as we have something similar with DS2 (age 3).

I joke that we have one DS who toe walks, lines up cars, hand flaps, is completely rigid/oppositional/inflexible, a picky eater, who refuses to wear gloves, and is obsessed with car/trains/lifts… And our other DS is autistic.

DS2 is extremely sociable, potty trained easily, socially copies other children, and started talking at a year old, but he displays all the behaviours above. Everyone thinks DS2 is neurotypical, but - in practice - he’s actually more picky and inflexible than DS1.

DS1 (age 6) is significantly affected by his autism. He had a slight speech delay, didn’t toilet train until he was four, was expelled from kindergarten for behavioural issues, and his current school are getting an EHCP. But he was a much less picky eater than DS2 at his current age, and he had (and still has) a much wider range of interests. Also, DS1 has never lined up toys.

I don’t know if it’s possible that DS2 is autistic and we won’t know until he gets to 9+ years old? Or whether we’re just oversensitive to autistic traits as we have one autistic DS?

Exactly like my daughter (I posted above) seems quite common tk but the wall when moving up tk secondary

@Londonwriter yes it's really hard. We also have another child who has been asked if he is autistic by about 3 or 4 different people.

I am not sure if having an autistic child already makes us over-sensitive or under-sensitive to the signs. Maybe it's both, at the same time! But statistically having an autistic sibling does significantly shift the odds in favour of DS2 being autistic too. That should lower the bar on your suspicions, and it will make it more likely that an HCP would agree to refer for assessment. Except... I do think with mine he is just very anxious, and he lives in a smaller world because of his sibling so he doesn't get "normal" amounts of loud noises, crowds, surprises etc.