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.

Hello, Sorry for long delay. I needed to log in via computer and it put me off for a bit. This is very long, sorry.

Thanks for all thoughts so far. I agree there's no harm in putting her on the waiting list - although I'm not sure that the referral would be accepted as they have a strong triage process. If I get to the point where I think autism is likely and that a diagnosis will benefit, I would find a private provider I think.

Anyway, updates. I had a really helpful chat with my colleague and the below is kind of where I got to as a result of that, in case it is helpful @InoquousName The 'facts' - I know DD is very bright and has advanced cognitive skills for her age. I know that she is anxious, and particularly so around uncontained social situations (playtimes, etc). I know that she has been bullied. I know that she is an only child . I know that she doesn't have a wide range of social/friendship experiences. I know her language skills are advanced. I know her cognitive empathy is advanced (for example, she can tell the difference between intentionally mean behaviour vs thoughtless behaviour, she can tell when she is welcome vs when she is not wanted, she can understand why people make the decisions they do, etc). I know DD feels different to her peers. I know she is emotionally dramatic so consider emotional regulation difficulties (although as she has a good understanding of her emotions, can identify them in her mind and body, can do the same for others emotions, etc apparently this emotional reactivity is less likely to be from autism and more down to temperament)

She doesn't particularly control situations as queried above, although as PP mentioned, it is harder to notice when she does because shes an only child so I think I would naturally absorb preferences without noticing them.

None of the above rules out autism (or rules it in). All of the above does explain why she is struggling in the way that she is, in the specific school context she is in, whether autisitc or not. E.g. her cognitive empathy means she understands that the stealth bullying is exactly that, so when the bully denies it to a teacher and the teacher tells DD she has overreacted, DD feels upset and misunderstood and subsequently more anxious that she will not be helped or supported by the adults in school and to seek out more "safe" or contianing environments, avoiding the ones she anticipates will include the bullying behvaiour. Similarly, some of her interests such as music are helpful ways for her to feel regulated and to also get attunement with other people - this can be seen through an autism lens but also through an anxiety lens.

I've really taken in the points made by PPs about their experiences, particularly those like me who might have assumed they'd see the signs. I'm keeping autism as a kind of potential working diagnosis in the background, but after all this, I feel galvanised to think ok, school and the bullying IS the problem, whether she's autistic or not. On that note, school have continued to not really understand it and we are looking at moving her. Although that may involve one of us moving jobs and/or compeltely re-working things so that we can continue to work and manage a different school commute, so the fact we've arrived at that as a conclusion probably says how strongly I feel school isn't meeting her needs.

@InoquousName I'm glad that the situation is clearer for you now and I totally agree with your thinking!

I think it was you who posted upthread about giftedness - that has been so helpful to me. DD IS gifted and although I knew it, I had ignored how it might affect her in the current situation and once I started thinking about it, I realised how relevant it is and it is made me understand her differently (better!).

DD had been talking to me recently about how she feels different from other kids and I showed her a list of "symptoms" of being gifted. She was so delighted as every single one described her to a T, and she felt very seen. It may not be the full story for her, but it was immensely helpful for her to understand herself and have a positive framing. It's a bullet list about halfway down this page if you're interested https://www.davidsongifted.org/prospective-families/gifted-traits-and-characteristics/

NB: It was helpful for her, a 7 yr old questioning her self identity and why she is the way she is, but I am not saying this is the last scientific word on it and I have no idea how esteemed that blog is. DD and I have also talked about autism but regardless, I think its been really helpful for her to learn about how her strengths (intelligence, empathy) are making some aspects of life difficult for her.

Hello, I just wanted to add a few things that might be helpful...
I was absolutely convinced for so long that my daughter could not be autistic because of the ingrained stereotypes most of us have about autism. I still think many people don't believe it even though we have a diagnosis now, but they do not see or understand everything we do. The NHS pediatrician as well as her OT did not think she was likely to be autistic but did still refer her. Even many professionals do not understand autism well in girls.
High anxiety is one of the main hallmarks in my experience. There are also many contradictions between stereotype and reality. For example, many people assume autistic people have trouble feeling or expressing empathy. In reality the opposite can be true, and many autistic people particularly girls experience "hyper empathy" which you can look up. This is where you are so in tune with the emotions of others it can feel deeply exhausting and painful at times. I believe this is part of the hyper vigilance that can come with autism.
The Autistic Girls Network is a valuable resource. Look up their white paper "autism, girls and keeping it all inside" for some good information on identifying autism in girls.
I believe in the importance of my daughter growing up with an understanding of her neurotype, why she may find certain things more difficult, how to advocate and make allowances for herself, and to know there are plenty of other autistic girls like her, which is why I believe it can be important to pursue a diagnosis.

Also in my experience it would be pretty impossible to receive an "incorrect" autism diagnosis. The process is extremely rigorous and based on extensive first hand observation from two different experienced clinicians (such as a paediatrician and an SLT) as well as all the history and reporting from parents and teachers. The clinicians have a duty to identify other possible causes for anything they observe, so other causes are absolutely something that will be within their thinking. I know several people who have been asked to watch and wait, come back in 6 months to assess further, if the current evidence is not clear. I do not believe you would get a diagnosis unless it was very clear cut.

Giftedness and ASD have some similarities and often co-exist but are also very distinct - a gifted person is likely to be different from their neuro-typical and neuro-diverse peers. As posted earlier, I didn't recognise dd's ASD when she was very young, but since primary school and especially after moving to secondary it's become very obvious. So we moved her from a highly academically oriented school (e.g. had coaching for maths, chemistry and physics olympiad-teams and individuals to compete in national and international finals) that was too much of a sensory challenge to a school set up for neurodivergent pupils but she still feels socially as isolated and different there than at her previous school. We just hope that 'giftedness' is a lot like precociousness, so she will fit in better once her peers mature and catch up. She often asks to do her GCSEs and A levels early, as she is bored to death in school and basically has stopped attending lessons, but if she would struggle socially and sensory-wise at uni at 18, I can't see her fitting in at 15 or 16, so we'll basically have settled on hibernating for a couple of years in the hope to wake up to a socially and academically better fitting world at some point. Her best relationships are with adults, she is very close to her piano teacher and former head of music and those are the only people she'll chat to and get out of the house to meet and feel excited to see, so I have hope she'll grow out of it - or more precisely, her peers will grow out of it 😀

Sorry to hear the school situation didn’t improve OP, sounds like you’ve probably had a stressful couple months trying to resolve it. Thank you for coming back to update following the chat with your colleague, I found the point about emotional reactivity particularly interesting, and I liked the psychological formulation style you used to work through your daughter’s situation - it prompted me to go back and do something similar for my DDs situation.

Yes, it was me who flagged the giftedness stuff, glad it was helpful, and thank you for sharing the link. Giftedness traits definitely seemed to resonate more than ADHD for us, at least for the time being.

good luck with the new school and job/s, your DD is very lucky to have a parent who is such a strong advocate for her, fingers crossed it all goes smoothly for you all :)

I thought I'd come and update, and also see how you and your DD are getting on @InoquousName

DD started her new school a couple of weeks ago and so far it is going really well. She's very happy and comfortable there, skips in every monring and skips out at the end of the day. She's made friends and generally just seems totally secure with everything. I realise now quite how unhappy she was before - even her face looks different as she's relaxed now. So that's been wonderful.

Now that she is happy in school, I'm able to start thinking more clearly about the potential of her being autistic... the other stresses have gone away so I think I will be able to get a better sense of who she is, now she is not being bullied and made to feel miserable and unsafe. I'm not sure I do have a clear idea yet at all - but I definitely feel like things are much much calmer and will become clearer over the next few weeks or months. We also have aprents evening coming up so I'll see what comes up there.

We would need to go private if we wanted an assessment as the waiting lists here are beyond ridiculous and I don't think she'd be accepted onto the waiting list at her current level of functioning because actually she's basically fine from a GP perspective. I really appreciate your thoughts on the importance of a diagnosis @mimiholls Actually, what you said about hyper empathy reminded me of myself as a younger person - it felt debilitating at times.

Thanks also @NellyBarney - that's very interesting, I hope we all wake up to a better fitting world soon too!

Hi OP

Great to hear your DD is getting on much better, irrespective of whether she is/isn’t autistic the previous situation was clearly having a massive impact on her wellbeing.

At our end, I’ve been working on supporting DD to feel more in control of her emotions, and it seems to be going well. We’ve had a big improvement in some areas, such as managing embarrassment if she feels she’s ‘failed’ in front of an audience, and the few episodes of getting totally overwhelmed by tearfulness when she has a small argument with me/her dad/her sibling also seem to have totally subsided. Lots of this has coincided with her stepping back from a friendship that was very intense, which probably has something to do with it! She is still definitely sensitive, but seems a bit more levelled out.

We’ve got parents evening soon so I’m planning on checking in with her teacher to see what he thinks/whether he’s noticed any improvement. From a home perspective we still don’t think her personality quirks are of a nature/degree to indicate ADHD and id be doubtful about her meeting diagnostic thresholds due to no objective impact on functioning, but we will continue to be open minded about what school say as they are seeing her in a very different setting. I’m still very keen to avoid unnecessary assessments or contact with services where possible so would only be going down that avenue if she was struggling in some way….. so hopefully school confirm that she isn’t at parents eve!