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.

I think if it's only external behaviour that doesn't upset her or affect her social development then maybe just wait and see? This is an age where lots of children can have tics or oddities that go away on their own.

What you described sounds extremely similar to my DD, she displays some ADHD/ASD traits but not severe to the point of needing support. This is not surprising as DH and myself are also borderline ND but never been diagnosed and we've both always had jobs and friendship groups. We know privately that we are easily overwhelmed by day-to-day things that don't bother most people so we have a system for outsourcing or streamlining most of that.

I've always been open to seeking support or even medication for DD if it becomes apparent she needs it but so far she doesn't appear to be suffering or unhappy. If anything, she's an extremely happy child and with a few quirky behaviours (talking like a cat is also one of those!).

I'm also in the process of moving her to a private school because of a higher staff to student ratio and Montessori approach. She's currently thriving quite happily at a state school but I worry a little about the rigidity of the curriculum especially later on.

Deep down I feel that DD is not NT but she falls somewhere in the grey zone like myself and my husband. We're both adept at masking but at the same time it's not severe to the point that it feels like we're sacrificing our mental health. We genuinely enjoy social situations as long as there is time to unwind before and after.

I'm basically going by DD's mood. As long as she's happy I don't think I want to intervene too much or request extra support from the school.

Just wanted to add that there's no reason for her to end up being picked on later on because there are always other ND children around. (Looking back, a huge number of friends I had during school and university were clearly ND themselves. Some have received adult diagnoses since then). She may well find friends who have the exact same obsessions and don't mind her quirky behaviour. Especially as she sounds like a lovely, enthusiastic and friendly little girl, there's no reason worry at all about the social situation just yet.

My DD was diagnosed with Autism at 11. At 5 we also had hand flapping, sensory avoiding (noise, smell and taste in her case - very restricted diet) and eye contact was fairly brief. She was very happy though, loved preschool and school, no behavioural issues, highly intelligent, confident, had friends, no developmental concerns. She didn't like party games and didn't always want to try something if she wasn't sure she could do it. But we thought all this was within the normal range at the time. As she got older and especially after hitting puberty it became more and more apparent that she was autistic.

All three of my children flapped and Dd did the grimace thing too (as did I as a child) and hated hand dryers at that age.
all have now stopped. DD has inattentive ADHD, but her concentration was very poor at age 5. So it was pretty obvious it was that.

My daughter coped fine until secondary school. Then she had total burn out and school refused. The excessive noise was her biggest issue but also not feeling safe around so many people, after having attended (for that reason) only very small primary schools (70 in her first and 100 in her second)

It's definitely worth getting a diagnosis IMHO.

I've only just got mine (fully fledged adult with grown up DCs) and it would have made life so much easier if I'd had it many years ago.

I did well at school. I struggle with noise snd anxiety and some of life's practicalities. Really bad at dealing with finances and I hate all electronic noises (phone always on silent).

I've had lots of abusive relationships - due to autism, I trend to be very trusting and loyal, don't understand subtleties, so I am open to being manipulated.

On the plus side, I have fantastic attention to detail and am very good in jobs that involve following lots of rules and procedures . I am very focussed at work.

Dd didn't have typical meltdowns either. Still autistic.

There are some routine issues,
Some sensory issues,
Some special interest causing some social issues.

Get current school to write down their observations.

Get new school to observe.

There is enough there to think possible autism but you need a reasonable amount of evidence to get a referral.

If she is autistic then a diagnosis before secondary applications would help so leave it no later than the end of Y2 to get the ball rolling due to waiting lists.

I have a 7yo DD who is exactly like this. Flaps, hates hand driers, highly quirky, very imagniative, went through a huge phase of pretending to be a dog particularly in social situations where she felt awkward. She loves school and they have never flagged up concerns about anything, we have no meltdowns etc. However she has a younger brother who is going through an ASD assessment who shows far more classic signs of ASD and will almost certainly be diagnosed. At the moment DD is happy and if she does have ASD it is causing her no issues at school or socially currently. However I'm a secondary school teacher and have lost count of the number of times we see the wheels fall off with nice, well-behaved girls similar to DD around Year 7/8 and it later turns into an ASD diagnosis.

I'm focusing on DS's diagnosis at the moment which should be in a few months, but I'm going to have an informal chat with the SENCO at school soon about documenting anything with DD that is in line with ASD characteristics. I think if she has ASD she would have likely slipped through the net without DS's needs meaning we needed to learn more about it. However it's also possible she's just a happy, imaginative child (who has learned the flapping behaviour from her brother, in our case). I do think it warrants looking into though, but I suspect we'll struggle to get a diagnosis as there is far less evidence in her case, whereas it is blatently obvious with DS!

This is exactly the stage we are at now. Few signs in her younger years, but has now hit like a train.

I want to ask how things are going for you, but am also quite scared to hear your response tbh.

@CoffeeDay Thank you so much for your helpful reply. I can relate to everything you said, including how DH and I are.

Thank you for your reply and sorry to hear about your struggles. I hope your diagnosis gave you some relief x

@Jesko secondary start was only 2022 so she is still sort of recovering from the whole experience.
we were super lucky to have the most supportive school but even with her getting to skip a whole load of classes etc I deregistered her in the end because it all just became trauma.
her older brother, my middle child, went through a similar thing 3 years before and he has since rejoined society as a confident teen so I’m hoping hoping that my daughter too slowly rebuilds her tolerance to people and school.

I ask myself every day if I could have done anything differently but we are where we are.

the home education community is absolutely “littered” with SEN kids who just couldn’t thrive in school.

I would start making a note of all things you have noticed especially when she starts the new school to build a picture in order to get a referral for diagnosis. How you describe your DD is very similar to how my DD1 was at that age. She was referred at age 10 finally by school and diagnosed eventually at age 13.

It is good that the new school has already identified some behaviours, hopefully it will mean that they will provide good information to support a referral for diagnosis. The earlier you can get a diagnosis, the earlier you can get support in place. The difference in support that my DS has had due to getting his diagnosis at age 4 and the support DD1 had throughout primary when she was struggling.

Thanks @Divorcedalongtime

I don't think home school is much of an option for us, we both work and need to work, and I can't imagine much school work getting done tbh.

Saying that, there's little to none getting done now.

We're obviously at the same stage of the journey then. God it's hard.

I don't think you can get a diagnosis if everything is fine other than displaying some quirky behaviours. There has to be significant deficit in the 4 diagnostic areas.

It isn’t atypical though. It is absolutely normal for a girl with autism who does not have any intellectual disabilities.

they will get by until they don’t.

The stress and anxiety of masking hit my own dd at age 9 and it hit her hard. We got lucky. I have friends whose daughters didn’t collapse until puberty and that often means eating disorders. We are constantly fighting against developing an eating disorder, but have managed to keep it at bay, I think in large part because we got intervention when we did.

my advice is to seek an evaluation. You can always choose to keep the results confidential, but you will know the situation.

You could have described me as a child. I was diagnosed ASC at 24. I “looked” fine to everyone on the outside but my very over developed language skills + very very clever masking hid it from everyone. I basically made 1 friend and just followed her round whilst she made other friends, bam, I look like sociable child. I had no true understand of how to make and keep friends.

Also say get her assessed
I had my DD looked at age 5. Was not not likely ASD but thinfs like speaking in high squeaky voice, moving around like a dog, obsession with every form of ponies lasted 10y (!!), talked non stop. Had colic & lactose intolerance as a baby which is a risk / sign of ASD

Burnt out yest 7 collapsed around time periods started high drama. Got private psych and inattentive adhd and possible ASD. Masks a lot still v sociable and popular. Struggles with organisation and seeing nuance. Makes friends with other dyslexic, tomboyish, non-English background types who get her. It's fine now

But be proactive. All these teen girls with MH anxiety eating disorders are probably neurotypical. Act while you can and get mediated. Worked wonders my daughter. Otherwise he outside mainstream school now and is high ability

Yes and me too. Along with all the other issues of socialising.

Yes it’s not easy. Home Ed doesn’t have to be done during school hours but I know it’s not the solution for everyone. In our case I worried for DD life as she got so bad.

@Fladdermus love your name (I’m Scandinavian)

You're the first person to have spotted it.

You're the first person to have spotted it.

@Fladdermus

😱🤗

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.

I think it will help. It will help her understand why she's a little different. Our DD was lovely and compliant until puberty hit, she went from being a model student to school refusal.

We were told many times that we should wait and see. Now she does need support it's really difficult to access without a diagnosis, for us anyway, I know it doesn't work that way for everyone.

Has anyone told you about Caudwell Children? They have a dedicated Autism building and very quick assessment, usually within 12 weeks. They're just off the M6 and there are hotels nearby, it's on the Keele Uni campus.

Sorry, forgot to add the link. It's here.

Can I ask you what exactly happened when she turned 9 if you don't mind? Or what kind of signs to look out for?