School have queried autism but I just can’t see it.

[WisteriaSister]

I’d appreciate thoughts and advice, especially if you have a daughter diagnosed with autism. I’m sorry it’s long, I’m trying to include enough context.

I feel quite knowledgeable about autism (I’m a paediatrician though autism is not part of my practice) but this has blindsided me. Has anyone had a child who’s gone on to be diagnosed with autism when you didn’t really notice any significant signs?

my DD (7) has always been insecure with her friendships. She’s an only child, no extended family nearby or close, missed out socialising during Covid, a late July baby, and is in a small rural school where the other girls in her class are autumn born and seemingly more outgoing.

DD has never had a really secure friendship group although she’s tended to get on with everyone and join in whatever games. She’s always wanted friends and to have stronger friendships than she does - though she also enjoys time on her own (she’s happy to wave friends off after a play date!).

In the last year or so, she’s been part of a group which is dominated by one girl in particular who seems do a lot of ostracising/criticising and leaving out. DD is often one of the girls who is on the wrong side of her. When it’s another girl being ostracised, DD tends to fret about the wellbeing of whoever else is left out - so those days are upsetting for her as well as the days when she’s the victim. Generally there’s a lot of stress and drama between all of the girls I think.

Anyway, I’ve been raising this with school as it’s really affecting DD’s wellbeing. School have now said they also are worried about DD as she’s really anxious in school about all sorts of things (not just friends), and also gets very very very upset over the friendship dynamics and can’t be talked round. They also said they think she gets too happy when things go well. I’ve been raising this in the context of what I see as low-level bullying in the friendship group. But they are saying they’re really concerned about her mental health, and think I should consider the possibility she has autism.

other bits of info for context, she does very well academically and hasn’t had any developmental delays (language, motor, sensory). She’s fairly easy at home except when tired or stressed (usually from a friendship things). She’s fairly confident outside of school, good language and conversational skills, caring towards others. No intense interests. Never any prolonged tantrums when little. Dramatic flounces and lots of “this is the worst!!!!” Type exclamations when things don’t go her way now - but only when always stressed about something else.

my instinct is that, yes, DD is anxious and stressed in school - the recent “bullying” has interacted with existing social vulnerability due to her younger age, her less-good socialising (being an only, Covid, not having lots of family friends to knock about with etc).

BUT if school are seeing autism, I don’t want to discount it. I’m wondering from a parent’s view, if this has happened to you, and if there were any things in hindsight that were a “sign” that only became clear after the diagnosis or things you felt were typical because they fitted into your family life but later you realised were more unusual compared to other children.

I’m just going round and round in circles in my mind. Thanks very much if you have read all of this and if you have any insight you can share. Thank you.

If the school is suggesting a referral for assessment, I would listen. Obviously, sometimes they are not correct. They aren’t qualified to diagnose. But some parents (including HCPs) don’t see the difficulties/recognise them for what they are because they are too close to the situation, whereas schools see all kinds of children.

Being academically able with friendship difficulties but having good language skills and the anxiety/worry are all typical of some girls with autism. Many don’t realise they are the signs until after diagnosis. As the demands increase as you head towards and through secondary school, the wheels start to fall off for some.

Are you making adjustments are home without even realising it? Sometimes parents make adjustments to home life and they don’t realise they are even doing that. It means DC cope better at home because the environment meets their needs better.

Thanks for your thoughts. I actually agree with everything you’re saying ….. but just can’t feel it applying to me/her, I can’t think of any adjustments I make aside from being a relatively conscientious parent but nothing different to all my friends really (I know that I might just be incredibly wrong about that - like you say, too close and therefore too blind).

They’re not suggesting a referral (yet) but even if so, the waiting list is around two years so so wouldn’t have access to a specialists opinion until then. I could pay for a private assessment if I can find a reliable clinic near to us. I suppose I’m worried about going along with the autism “explanation” if it means the school don’t address the “bullying”, and then it turns out that DD is had two further years of damage to her wellbeing by pursuing a “within-child” cause rather than an environmental one…. If that makes sense.

I know the medical professions idea of autism can be a bit basic and outdated so I could well be missing something but…. If a child is academically able, able to apply and generalise their learning, has good conversational language skills, and no other difficulties apart from friendships and anxiety….. then where is the autism compared to a girl who is “bullied” and anxious about it? (Sorry, I’m just thinking aloud as it were, I’m not demanding an answer from you!).

The school should be addressing the bullying (and providing support now) as well as looking at a referral for assessment. It shouldn’t be instead of.

The friendship difficulties and the anxiety can be the autism. For many girls, they are the first signs when you look back. Sadly, many are bullied because they are autistic (even if they aren’t diagnosed at the time). As a result of unmet needs and bullying, many have trauma. So it doesn't have to be one or the other.

Thank you. You are right that they are not mutually exclusive, and I shouldn’t get drawn into a battle of one or the other with the school.

So, thinking further, perhaps I need to go along with what they are saying about autism and also insist they address the bullying/playtime dynamics. At the moment, they are saying there is no bullying it’s that my daughter just doesn’t understand/cope because she’s autistic. Teacher has admitted she has no idea what happens in the playground though (!!!!). However, I’ve literally witnessed some of it at pick up/drop off, and I know of some other parents who have had concerns about the ringleader before. So I need to push them to support and address that, regardless of what diagnosis may come or not come for my DD….

DS wasn't diagnosed till 10, no one had any concerns before his very experienced teacher suggested it, I had never considered it. But then it did add up in 101 little ways and he was diagnosed with Aspergers. He was bright, no language issues, never any delays. As he got older the social gap became a bit more obvious - he was still into toys at 10 while others were already getting into girls and he became more introverted through secondary school - but got excellent grades. I put things down to him being an only child or to him being a bit fussy (food/sensory things), to him just being a little quirky at times - nothing stood out hugely though.

For assessment I wrote down every little thing I had noticed for example he was really liked telephones for a while when he was little, he would explain jokes when he first learned to tell them, he didn't like to eat anything in sauce - lots of little things like that. The report from school was done by his new teacher and made him sound like the perfect child! (He was clever and well behaved) but he was diagnosed within 45 minutes by a paediatrician that specialised in ASD.

Thank you @Tina159 thats really helpful, I appreciate you taking the time. Lots for me to think about.

So, thinking further, perhaps I need to go along with what they are saying about autism and also insist they address the bullying/playtime dynamics.

This is what I would do. Whether or not the school sees it as bullying, they need to do something.^

Even if it wasn’t bullying, and I am not saying it isn’t, the school needs to provide more support to support the interaction and communication difficulties and anxiety.

Another thing to think about, you say no special interests. It is worth thinking about that some more. Often with girls, their special interests initially go unnoticed because they are more socially acceptable interests than the stereotypical view of special interests.

Another thing to think about, you say no special interests. It is worth thinking about that some more. Often with girls, their special interests initially go unnoticed

That’s a good point. I can’t think of any particular thing that takes up more of her time than others. (Well, she would play some iPad games til the cows come home if I actually let her but I assume that’s true for a lot of children). She loved bunnies when she was about 5, so would ask for bunny soft toys/stationary etc if she saw them and be quite delighted but not to the detriment of other things. She does over-watch some TV shows- for example one will catch her interest and that will be the series she chooses to watch for a while, until she finds a different one. She does love music and listening to music. That is one unusual thing about her: she’s got a great memory and can pick up a melody or lyrics quite easily. She has a good ear in that way. Not astoundingly so, though. (I’ve met children who can memorise story books after just one read etc. She’s not at that level). I’ll keep thinking though.

I can’t tell you how helpful this thread has been already. I really appreciate you having taken the time with such considered thoughts.

My DD wasn’t diagnosed until she was 16. By the time she was diagnosed I was expecting it but it took quite a few years to get to that point. It was like bringing all the pieces of a jigsaw puzzle together and finally getting the picture. I work with primary school aged children so, like you, I thought I would have seen the signs. But when DD was 7 I didn’t notice anything unusual either. She was also part of a toxic friendship group with bullying, very similar to your description. She is still traumatised by that over five years later so I would really push hard for that to be addressed.
i would listen to school and if they are suggesting an assessment, go with it, your daughter will be the same person with or without a diagnosis but it might save you a lot of heartache further down the line. We hit crisis point before we were listened to sadly.

My daughter's psychiatrist tells me that it is quite hard to tell the difference between girls with a high IQ, and girls with autism. They have a lot of characteristics in common. Especially at that age. I suspect things may become a little clearer as she gets older.

Thank you for your insight @Dancingdogs and I’m so sorry to hear you had to hit crisis point before you were listened to. I do hope things are looking better now. Thank you for the advice to ensure the bullying gets addressed. I feel clearer on the urgency of that now.

thanks @PomPomChatton That’s a very interesting point.

I suppose it’s difficult as she is an only child.
So she doesn’t have to accommodate siblings within the family group everyday. She will have the saying on every day life regarding you and what your preparing for her dinner she won’t have to accommodate people within the family unit (I think that’s when I notice the difference)

However is she dominate / controlling about her needs / her food / her timings? Does she worry and dominate what you do with her - where you go - what not what to say to others - eg in a restaurant not to complain if service is slow. Body language too does she look anxious? Or selective mute / hiding in social situations

I suppose your daughter hasn’t got too much into sport being young but it could be controlling how you park the car, where you park the car and the time to leave for a sports match….. trying to dominate everything so not malicious but just controlling as that’s the way to ease things.

It’s absolutely amazing the school is supporting this as usually they are useless (only been in the private mainstream system and multiple schools as I’ve got lots of children but seen lots of private indies and 2 ASD children)

If your child isn’t happy at this school just move her…..

She is young so happiness is key

I would definitely go for an assessment. My dd is textbook autistic and looking back, I now see so many signs. But despite it being 'so obvious', until she was almost 10 years old it never crossed my mind, and I'm a SEND governor and working with neurodiverse and dementia patients all day. For girls, it seems so often the transition to senior school at 11 years old when it starts to become obvious/a 'problem' with school refusal/burnout/meltdowns, so being aware of it beforehand is an advantage.

Just some points why I didn't spot my dd autism: in young children, social anxiety is often seen as just being shy and my dd was always very sporty and physically brave, so would play with others jumping off drop slides, ride her bike etc. Her special interests are maths, music and Taylor Swift - every parent and teacher is happy when a child does their maths homework and many girls follow TS and sing along to her songs. Girls often mask at school and are very well behaved, polite, try their hardest to get along with classmates and often with their parents, too. But your dd reminds me more of my ds who has both ASD and ADHD. Both conditions mask each other, and like your dd, my ds is very empathetic, super caring, etc but almost obsessive about his feelings and concerns for others - it's like his feelings and concerns fir others are his special interests, and obviously adhd and autism make regulating emotions very difficult, while the autism makes navigating friendships very difficult and social interactions very exhausting.

Sounds a lot like my daughter with adhd

I’m going to come back with a longer reply to you all soon (shifts busy this week) but I just wanted to quickly say thank you so much @NellyBarney @SweetSugarPlum @onlyonepepper for sharing your thoughts, advice and experiences (and everyone else from the start of course). My thinking about DD is really shifting - like a kaleidoscope almost - and I’m starting to think about certain characteristics or patterns that I’d always either written off as contextual or down to me being a bit lazy/incompetent/impatient etc. Thank you.

My DDs were diagnosed with autism at 17 and 13. Most people don't see it - because they mask and behave well. But they are both affected more significantly than we anticipated. For many bright girls, puberty is when it starts to become more obvious that "they aren't like the other kids", to quote what I was told.... They learn coping strategies, they copy the other kids at school so fit in to a certain extent. But as the other kids get older and more complex social interactions take place, they struggle to keep up.

For my older daughter, it was actually that she gravitated towards the other girls in her year group who were also autistic - though we didn't know it at the time. So they were all similarly quirky. And didn't stand out against each other....

Then things that didn't matter when they were little become more important. I would arrange play dates with other parents - still do! Growing independence doesn't always happen in the same way.

I would say keep an open mind and if the school are willing to refer, you have nothing to lose. You may find that things get harder and by the time you actually get an appointment, you may need it more.

Meanwhile, ask school to put support in place for social interactions - most schools have a programme for this.

Hi OP,

Wondering where you are with your thoughts on your situation now you’ve had a few weeks to process things? We are in a very similar situation- I’m a mental health nurse so have some knowledge around autism/adhd, but school suggested neurodiversity for 8yo DD at parents evening a few weeks back and it just doesn’t seem to match my understanding of my child. Im worried about things going down this pathway and DD potentially being labelled with something incorrectly, but I don’t want to discount the school’s concerns if there is stuff going on that I’m just not aware of.

Im going to speak to school to ask for a meeting to get a better understanding of how she is presenting at school, as mindful this might be very different to how she is at home. But my DD sounds very similar to yours, doing well academically, a sensitive soul with a strong sense of empathy, no special interests but a wide range of things she loves, no developmental delays in infancy, very social and confident, good language skills, can shift concentration between things. She has had very positive friendships throughout her life, but we moved to this area 18 months ago and I’m not sure if she’s managed to recreate that here :( however she is happy at school and does have some more superficial friendships, I notice friendship issues have a huge impact on her though when there are problems.

I’ve been scouring relevant mumsnet threads for others’ experiences, and ended up following a recommendation to read a google books preview of a book about how gifted children can be misdiagnosed as neurodivergent. The descriptions in the book really resonated, much more so than neurodivergence…. although I wouldnt have called DD gifted, just bright, but now wondering if I’ve missed something. Anyway the link if you are interested is: https://books.google.co.uk/books?id=NQrtt-peg5AC&pg=PA2&source=kp_read_button&hl=en&newbks=1&newbks_redir=0&gboemv=1&ovdme=1&redir_esc=y#v=onepage&q&f=false

Sorry for such a long silence. I’ve been really up and down with this - thinking yes I see it and then nope, still don’t!

Your stories above have given me a lot to think about. It’s hard to differentiate between what could be a general fad (Kittens!) vs a special interest - but it’s helpful to know not to dismiss everything as a typical fad.

I have a paediatrician colleague visiting our service later this week for some management thing - she does work in development diagnostic clinics so knows more about autism diagnosis than I do- we’re going to have a coffee and a chat about this, which I’m very grateful to her for. I will feed back here!

I still keep coming back to the problems in school and the “bullying”, and need to keep reminding myself not to be deflected from sorting that out. I worry the school is being defensive and is pushing autism as a way to ignore the other stuff as if they are mutually exclusive. I need to keep on reminding myself (and the school) that both things can be true. Thanks for all your thoughts and suggestions so far - I’m so grateful.

@InoquousName Thank you for posting. We are in such a similar situation and our DDs do sound so similar. I totally understand the dilemma between not wanting to discount the suggestion and also not wanting to go down the wrong path. That book looks interesting, thank you - I will check it out. I still have affiliation with my old training school so am wondering if I can get a library copy and read the full thing.

I will keep posting here with updates - would be so interested if you do the same.

Hi OP,

Sounds really positive that you will have the opportunity to have an informal chat with a specialist, hopefully they are able to give you some reassurance either way, and I would interested to hear what you take away from that discussion if it feels appropriate to share.

I have a meeting with the school this week, they are great and I have a lot of respect for DDs teacher so am doing my best to go in open minded and just hear what their concerns are.

like you I’m going back and forth around the possibility of neurodivergence. over the past couple of weeks when we have had issues that I previously would have attributed to sensitivity/perfectionism (eg an OTT reaction to losing a tennis match because she missed the final serve, or crying after I’ve gotten slightly frustrated with her), I’m now second guessing myself and wondering if I should be considering ND. But then at other times I see her quirks as within the range of NT behaviour and think she is growing out of some of the behaviours, and that I shouldn’t be using diagnostic terminology to conceptualise her personality - eg I fell down a rabbit hole this week wondering whether her sensitivity and perfectionism could be classed as ‘rejection sensitivity dysphoria’ which often indicates ADHD. Basically im just overthinking everything and torturing myself about the impact of making the wrong choice for her!!!

Wondering what would be the downside to popping her on the NHS waitlist? Also, wondering what the school can/should be doing about the bullying in the meantime? What would be the positives to a diagnosis? Would it be that your daughter would be able to understand why she is different?
It’s such a tricky one. My son is autistic and I am starting to realise I am possibly too. Your post makes me reflect a lot of my childhood experiences. Good academics, deeply empathetic, wants friends but struggles to form last friendships. I appeared shy and was bullied, mostly not in front of teachers. I didn’t understand unfairness (natural sense of justice) and cried when my granny trimmed flowers as I felt it hurt them. Perhaps NT people sense ND people’s differences. I was born premature but met milestones and was not a fussy baby. My son was the opposite! Born late, late milestones and very fussy baby. It’s so hard because with girls so much is felt internally.

Hi OP,

Just as a bit of an update, I had a meeting with DDs teacher the other week. It was really reassuring in that he stressed that him raising neurodiversity was just about touching base to see whether it’s something I had observed at home, rather than there being an unambiguous indication in the classroom. He suggested DD presents similarly to 2 girls he taught previously who both went on to get an ADHD diagnosis, mostly in how her resilience/self esteem is quite low and she can quickly get upset. He didn’t actually raise anything around attention strangely, and said no concerns with social development or behaviour, stressing that they didn’t have any concerns at all about DD. She has friends at school and is hitting ‘greater depth’ in each area of her report, so if there is any inattentiveness then I would struggle to interpret that as being of a level that is impacting on her functioning.

We have decided just to watch and wait as I’m just not convinced it’s ADHD, and coming from a clinical background I have some concerns about the future implications of having input from services/diagnostic overshadowing/iatrogenic harm. If there was a clear need/impairment then the balance would potentially tip for me, but as her presentation could just be personality and the fact she moved to the school 18 months ago, I don’t think the value in seeking a diagnoses justifies the potential risk when she is functioning well.

DDs teacher has been so supportive about classroom strategies to improve resilience, and from a home perspective I’m going to work on encouraging some deeper friendships, along with continuing to model failing at things (plenty of opportunities for that!!!) and encouraging her to talk about things she’s struggling with.

How are things with you and your DD? Did you manage to have a chat with your colleague who specialises in this area?

I read your post with interest. I have a son who, in year 6 at school presented as very anxious, sometimes tearful and the teacher was on about his mental health and anxiety all the time.
The reason was her. She was a very critical teacher who basically made his life a misery. Since leaving that teacher three years ago he’s a different child (in fact was a different child the minute the year ended)
My reason for saying this is, it’s so great that schools focus on mental health, diagnosis etc but sometimes there is a more simple explanation such as friendship dramas or a crappy mean teacher.

I remember having an awful job once (with a horrendous bullying boss) and it made me feel so down and unhappy, I would cry on the way home, cry on Sunday nights etc but as soon as I left, I was totally fine and have never felt like that again.