Potential mild ASD?

[Rainyautumn]

Sorry, might be a long post.

My DD (6) has been until around about 5 yo a very typical child. Hit all milestones on time, very good clear speech since she was a toddler with huge vocabulary, quite mature for her age, no meltdowns or tantrums since she was 2 yo. Great eye contact (when she was a baby in her pram she used to look at people in the street, smile at them and then wave).

Settled into nurseries/school with no help, she loved and still loves school. Always seeking social interaction and has a few friends at school and outside school. Doing well academically.

No sensory issues apart from being scared of the toilet flusher/hand dryer which I know a lot of NT girls struggle with as well.

However, there are lots of odd behaviours that I've noticing now she's older.

Since the age of 3 she started flapping her hands (with excitement mostly) and school reported when she was in Reception that she used to zone out and hand flap. She'd stop when prompted. This hand flapping has disappeared now and her Y1 Teacher said she has not seen her do that at all.

Her speech is very immature, she talks like a 4 year old, finds it hard to articulate what she thinks and I can see a huge gap between her and lots of other 6 year olds. This is very upsetting because she never had speech issues.

School says she still 'zones out' and has to be prompted to do her work. She's also slower than the rest of the class, although capable and likes to finish her work at a good standard. She started school being in the top group for maths and has now slipped because she can't do it independently and asks for explicit instructions. Once she gets the instructions, she does it very well and is working ahead of the curriculum. Her teacher also said she got great eye contact, she doesn't cover her ears at the sound of toilet or hand dryer anymore so they are keeping an eye on her too.

I can see she is not very socially fluent. She is happy to just follow other kids and is quite naive in the way she understands the interactions. She is very loved by some of the girls in her class but these girls are very boisterous and bright and I think they like her because she's the total opposite to them, she doesn't argue, she's happy to follow them and is very kind.

She swings from one leg to the other when trying to articulate something, sometimes shakes her her from side to side when thinking about something and we think these little quirks are replacing the hand flapping.

She also paces back and forth a lot being in her own little world.
I am still getting her dressed especially in the mornings, (half) spoon feeding her as she is so slow and 'away with the fairies'.

On a 1 to 1 basis she is very chatty, (almost too chatty) and overconfident with strangers.

She's at a private prep girl school and I notice how totally different she is from all the other girls.

I should say she's been under the care of a pediatrician since she was a baby for a potential thyroid issue (all my side of the family has it) and so she's been assessed regularly (now twice a year) for any physical/mental development and no doctor ever spotted anything. They always commented how typical her behaviour was and how bright she was. I brought a few issues up last year and the dr said she's probably just got a few quirks like most of 5 year olds as she didn't seem to struggle with anything.

I'm having another appointment with her doctor soon and I just don't know how to approach this as I do feel like she needs an assessment but from and NHS perspective I don't think she meets the criteria yet. Is it too early to take her for an assessment, is going private worth it at this stage?

Can anyone relate to this?

ND girls often maintain eye contact and talk well. They don’t present like boys. It was only after my dd was diagnosed at 16 did l realise her special interests were Jellycats and Taylor Swift. Girls can fly under the radar as they contain it.

Have a look at this.

https://autisticgirlsnetwork.org/wp-content/uploads/2022/11/Keeping-it-all-inside.pdf

I don't think she sounds autistic. Possible ADHD / ADD?

Dd 11 had been on the waiting list 3 years now. If your concerned I'd look into it straight away.

I was diagnosed age 35 and wish it was sooner.

Thank you for your advice. Can I ask you what traits did your DD present and when did you start noticing? Also how has her life been impacted?

I did think of ADD (she's not hyperactive and very well behaved and easy going) but I can't find much info on ADD in kids.

Angry / moody / hyper / talkative / can't concentrate / hums out loud / rocks / needs order / particular with her things / hates change / hates people telling her what to do.

I'm not sure whether it's ADD or ASD or neither. She might just be a little shite lol. Eldest dd13 was tested age 7/8.

My only advice would be to listen to your instincts. Schools (and GP's ) are not the best people to diagnose ASD. She may be managing just fine at the moment, but you probably already know that transition to Secondary School can be a time when everything falls apart for children with ASD. It would be way better to have support in place before that happens (if support is needed). I would suggest asking for her to be placed on the waiting list for assessment. It will probably take three years to get to the top of the list, by which time, things may be clearer. You can always take her name off the list for assessment if you no longer feel it's needed.

I should say that her teacher says DD is 'very measured' in whatever she does, she thinks twice before giving an answer but then she gets lost in between all the louder girls.

I just don't know where to turn to and how to help her as I can almost see she's going to struggle in the very near future. She's already saying she doesn't like 'doing maths' despite being her favourite subject and actually being very good at it.

Does sound more inattentive.
But would say the sensory issues can change and new ones appear.

I can definitely see a lot of ND traits. I have an autistic girl who may also have ADHD, but I haven’t got the energy to get back on the diagnosis path right now 😅

Like you say, your DD seems to have a selection of stims that come and go. The zoning out can be a mixture of inattention and disassociation.

Autistic girls often present with precocious speech and a big vocabulary, my DD certainly did. She also came across as quite socially exuberant. It was only as she got older that I could see she wasn’t very socially fluent (that’s such a great way to describe it). She too was chatty and overconfident with strangers. She preferred interacting with adults as opposed to her peers.

Finding it hard to articulate what they think - yes. This is a social-communication red flag. I found it bizarre that such an articulate child could struggle to verbalise things, but my DD still does. She will even now launch into a story about something with zero context (like “so SHE said…) and I have to interject with “what? who?” And she’s 12 now.

The issues with maths could be due to slow processing speed.

Also regarding meltdowns. I spent years despairing at what looked like self-piteous crying jags… until I realised they were meltdowns.

I think there are definitely some autistic traits there and it would be worth getting an assessment. Could be slower processing/auditory processing challenges too. My 12yo is diagnosed autistic and presented similarly at that age except that she managed school well but possibly had more sensory things going on (e.g. restricted diet). She was also over-social with strangers and there were noticable differences with her peers. She didn't have any meltdowns before age 9/10 and even then it would be easy to mistake them for just 'crying' if you didn't know she's autistic. She still flaps her hands at 12 but doesn't do it at school.

If you’re noticing differences and can afford private assessment, then go for it. We had an 1.5 hour initial appointment costing about £150, they tell you whether a full assessment is worthwhile or not.

This for sure. Better than speculation on the internet with strangers.

Fwiw, you cannot be mildly autistic- you either are autistic or not.

Traits are a non linear spectrum. Definitely disregard standard stereotypical lists of asd traits and look up girls. Totally different. Often girls mask and hide it then when they hit puberty it all unravels at speed - very different to boys. I think this also applies to ADHD too.

What @EasternTennessee said. We did this for my son. He was signposted to an Autism assessment, not ADHD. Now was an autism diagnosis.

Just to echo what everyone else said & to trust your instincts really. My DD is 5 & although we questioned whether she might be ND when younger it really only became more apparent to us when she started reception. I found when I mentioned it to friends/ family/ the school I was told that I shouldn’t try & label her so early & that it’s all totally normal. For example DD is very sound sensitive & her reception teacher just kept on saying ‘oh well, some kids are like that.’ Anyway we went with our instincts & got a diagnosis privately which confirmed it. I’m so glad we did as since starting year 1 she has struggled so much more & has ended up with autism burn out (presents similarly to depression). It took me a while to understand why some of these difficulties have become more pronounced as she’s got older but someone explained to me that as demand & expectations increase with age it can be harder for the child to cope & they can get overwhelmed.

Another thing I did was trawl a lot of old Mumsnet threads about how autism presents in girls. This was very useful for me as the only doubts I had were around social interaction & fixed interests. But I realised through reading the threads that the interaction side of things was more nuanced than I realised. I also realised that my DD does have some fixed interests & engages in quite repetitive play.
Good luck OP, it’s hard I know.

Thank you all for your advice!

My gut is screaming that something is not quite right and I'm concerned about a potential burn out.

I'll raise all these concerns with her paed next month and also consider private assessment.

My worry is also that her current school doesn't have support for ASD or ADHD, only learning support such as dyslexisa/dyspraxia etc. So I really don't know what the future holds for us 😞. Her issues were not obvious before she started school, these have come like a hurricane over the last year.

I also did that but DD doesn't seem to quite fit the description of ASD in girls either, she has some traits but not that many. For instance a lot of girls have sensory issues with clothes/shoes, we also know a few girls like that (one with ASD) but DD never had that.

DD never meltdowns, ever, since she was 2. She has little upsets but gets over things very quickly. She doesn't have fixations, likes routine but gets bored with the same thing as well, so she'll have a little routine for a bit then she says she's bored with it, then stops.

She's a very easy going child, not perfect, but we haven't had many issues at home and she's totally 'typical' at home. She can be loud, has a big laugh, very lively, very affectionate. Loves poetry, silliness.

We do have family friends with a girl with ASD and she's textbook ASD, hence we were confused. I realise now ASD is a very wide spectrum and I'm trying to make sense of DD's behaviours.

That’s interesting OP, I do remember my predominant feeling around all of this being one of confusion before DD was diagnosed. My daughter does have a lot of sensory issues & sleep issues which certainly fits but other traits are harder to pick up. I’m sure others will have more experience than me & can advise more.
As a pp said you can book a screening assessment to pick up possible indicators which could be worth doing as a first step.
I know that feeling of worrying about your daughter struggling & not knowing quite what to do to help.

Dd was a model student, popular and a bit I'd a social butterfly on primary schools ..

By the time she got to juniors there was obviously something going on (in hindsight she was struggling with more complex social interaction and non verbal communication , more expressive language, and games where rules change frequently...

She was dx at 9 with ASD and ADHD a few years after...

The confusion is real. Her teachers are equally confused as they do notice certain behaviours that are atypical and are very keen on sharing that with us but they don't think it fits the ASD criteria (as far as their ASD knowledge goes). Her class teacher is very experienced in teaching girls only (she's been with the current school for over 15 years).

The last 12 months have been an absolute rollecoaster of emotions, something that we've not prepared for since she had been such a typical child in so many ways.

How is she with teeth or hair brushing?

My 4yo DD has ASD, diagnosed when she was turning 3. She’s at the milder end of the spectrum, (level 1 ASD , similar to the old Aspergers). Your DD’s behaviour sounds familiar, particularly the flapping, pacing, being away with the fairies. If you can afford it, an assessment will give you some certainty or reassurance. For my DD, we had some early intervention support for six months, and since then she’s been in mainstream schooling. It just helps that we know, and her teachers know, so we can all tailor our expectations and approach accordingly.

She's always been fine with teeth. With hair brushing she moans about it a bit sometimes, but I don't know any girl who is happy to have her hair pulled about (I have to do 2 plats for her every morning as she's got long hair).

What made you go for a diagnosis at such a young age considering she's on the milder end of the spectrum? What were the signs? Just asking to see if we maybe missed some signs when DD was younger. Are you in the US?

We were in SE Asia at the time. We’d been wondering for a while. There were a few indications- flapping, lack of eye contact, seeming away with the fairies. Running back and forth on tiptoe when stressed. We noticed that sometimes it seemed like she was repeating lines from TV shows instead of saying her own words. She wasn’t connecting that well with other children, which hadn’t been at all obvious at 2 but was starting to be noticeable by 3.

But while we were occasionally googling and watching YouTube videos which listed symptoms, it wasn’t until her nursery raised it that it became real for us. Because we went private and the medical system there is top notch, it only took a month or so to get the diagnosis. I’m really glad we did. It meant we could enroll her in a really caring and focused therapeutic program (not ABA!) that which brought her on leaps and bounds in terms of her social interaction and regulation. It also means going forward we can help her understand herself, better advocate for her, help teachers understand her etc etc.

That’s interesting @ClubTropicananana. I’m interested to know more about this therapeutic programme. Was that something that was available in in SE Asia?