Worried sick about my DD with suspected ASD - primary age

[Worriedmum12345678]

DD is in Y2. First I should say we didn't have any obvious signs she might have ASD until she turned 5. She used to be very social, confident, made friends easily, very chatty, very bubbly. Joined in all activities at nurseries/school, settled in amazingly, very independent.

She started school at a local primary and withing the second half term we started seeing changes in her behaviour. She came home stressed, her confidence started slipping and she occasionally would refuse to go to school. Nothing too worrying but it was totally out of character. She was still doing well academically and made a few friends. We suspect there was a lot of disruption in the class and she was hit and spat at a couple of times. We decided to take her to a private prep half way through Reception.

She is in a class of 17 girls. She has loved her school from the beginning and doing well academically. However, we hear about disruption in the class, one girl with suspected ADHD is causing a lot of issues with all the girls, low level bullying and meanness overall among a few others and DD can't cope. It's becoming more stressful now and she worries about going back to school. One girl in particular is very bossy and picks on DD. DD has told her teacher but nothing was done. I'm devastated! I have no idea what to do for a child who is very well behaved and sensible, who just wants to learn in a reasonably quiet environment. She has a friend in her class who is lovely but she can't get past the negatives.

She's not got a diagnosis, NHS has been fobbing us off for the last 18 months. We can't even put her on a waiting list as 'she's not severely impacted'.

Can anyone relate and has any advice? I feel like I'm getting mentally unwell from all these issues that DD can't seem to get past. I know there are other girls at school who struggle with friendships and the disruption, but they seem to cope a lot better.

Go through the Right to Choose scheme. It's free, as it's still via the NHS, but when your GP refers you, you need to ask to be referred via the scheme, and name a provider. You may also need to provide the form on the website via email to your GP. This provider offers the service for children aged 5+. Right to choose ADHD & autism assessments | Clinical Partners, so as long as the GP thinks there is a chance she is autistic and is happy to refer her, the wait time will be 5 1/2 months rather than years as the general NHS list is.

Thank you so much. Never heard of this but I'll take a look x

It is extremely unusual for a child to have no obvious signs of autism until the age of 5 and then present as if they are on the spectrum.
Who has suggested ASD? Does she have sensory needs? Were there any concerns about language development, echolalia etc? When did she start to walk?
A developmental history is taken during assessment on the autism pathway.
It’s only a snapshot of your DD but she sounds like she may be quite serious, well behaved academic and sensitive.
Obviously presentation is different in girls and as they get older they learn to mask but not before 5.
I know you must be worried. I’d speak to school about building up resilience and coping strategies.

What exactly makes you suspect ASD OP? She sounds stressed and anxious, but that doesn’t necessarily mean autism.

When you say she can’t cope…how does that present?

This ^

Especially in the context you have described where there is clear evidence from your post that her current school environment has reason to cause her understandable anxiety.

Personally I'd be putting more focus on addressing the issues you mention with the school than seeking a diagnosis.

The current zeitgeist to presume a child is not NT when exhibiting behaviours in response to stress before addressing the stressors and supporting resilience and coping strategies , is a worrying trend imho.

She had a totally typical development. Early talker and all milestones hit on time or earlier. No obvious sensory issues but started to flap hands around the age of 3 which was mostly due to excitement. She's not doing it anymore. A bit of echolalia but I was reading at the time it can be part of normal speech development?

No tantrums or meltdowns, but she'd have the odd emotional outburst at home, never ever at school. Would get over it after 2 mins. She does struggle a bit with noise now, not severely, she never did as a baby/toddler. She goes to noisy trampoline parks/soft plays and loves it. Doesn't like it when it's too busy, but doesn't like it when it's too quiet either as she finds it boring, which is not far from normal. She does struggle massively with the noise and disruption at school. Don't know why at school things are so different and she's so impacted as outside school she is very loud and lively herself.

She was badly mistreated by a girl a few months ago and developed school anxiety and before the school found out, they asked me for a meeting and told me they suspect ASD. Again, they thought she was coping but that they would expect the wheels to come off in Y5. I feel like she's already struggling now in Y2.

I don't know what to do!!! I'm inclined to put her back into a state school but a small one, at least we don't have to pay a fortune! I'm just devastated!

It is not unusual at all for ND kids who mask well especially girls to present with no obvious signs including to family until this age. For some it's not apparent until puberty or even later. My autistic DC ran the full range from being cognitively ahead to significantly delayed. Most of the delays are caught up now with therapy, still autistic. One had zero speech or developmental issues and the other two needed significant therapy, speech, OT and physio. My DD is very smart and was able to copy behaviours around her and social problems didnt become an issue until she was 10, shes still autistic. She had some sensory stuff as a toddle but we didn't realise it at the time. All of my kids present very differently. Things not being apparent until 5 doesn't mean anything in terms of whether she is autistic or not.

Every single night she's worried about what might happen at school next day, that a girl has been mean recently, whispering things about her to another girl, she is bossing her around and teacher is not doing anything etc etc etc. Even though she has a lovely friend who loves her and is very kind to her, she can't get past the issues caused by others.

I also feel like this spring term she's declined academically a bit. Struggles to finish her work and not contributing so much in the class (but she doesn't understand why she's not performing quite as well as before, she says she gets a bit distracted). She used to do a lot of extension work before, not much this term. I'm having a meeting with the teacher soon anyway so will find out more.

Tonight she told me she wants to move schools 😩. She adored this school until not long ago, despite several previous issues.

My DD gets stuck on little negative things and struggles because of this. Partly I think it's her anxiety and partly the black and white thinking that some autistic people have. Is there only 17 girls in her year level? While small classes can be a plus if there's some strong personalities or not nice kids in the mix the lack of options for friendships can be an issue. Honestly if there is only 17 girls I'd think about moving her.

When we had dd assessed we were told that girls tend to get flagged for autism either when they start school or towards the end of primary school/ transition to secondary when the gaps in social development become more pronounced.

we played the is she / isn’t she nd game for a while with dd - she meets the criteria but is also very verbal and very social (though inept at social cues). In our area the wait for an nhs assessment is 3 years so we went private - same doctors that would have done the nhs assessment, so don’t see how there is any difference.

our dd really struggled in a large class when in state school, but is thriving in a private school with smaller classes and a very send friendly attitude. I don’t know if her autism is readily apparent - she copes quite well with minor adjustments in a small and calm class, but it is a very different story in other environments and in some extracurricular activities it is quite clear how different she is from other children.

i don’t think the question is as simple as state vs private, but rather which school will best understand her needs and work to meet them. In our case it was a private school, but it sounds like the private you have found is not a good match.

It's not as unusual if your child has high-functioning ASD.

I know people hate the term but they also hated the Apserger's diagnosis and, well, these kids exist.

My DS was also an early talker and is very intelligent. Also made friends easily at nursery and start of school etc. He wasn't flagged at school for possible ASD until year 3 and got his diagnosis in year 5.

Sometimes things come to a head more as kids struggle with change or issues arising in school. They may also manage at school and then struggle at home due to masking all day, which can really take a toll. If symptoms are internalised (with DS it was anxiety and excessive hand washing) it can take a while for teachers to know a child well enough to notice an issue and flag it.

DS is now at a grammar school and is absolutely flourishing. The place is absolutely riddled with high-functioning ASD kids.

Please try to stop worrying, OP. If you get nowhere with right-to-choose, maybe look into going private for an assessment?

Thank you, totally agree with you. This school doesn't seem to be a good match, although we are so apprehensive about moving her again. I know they are not an ASD friendly school but she got in when she was super confident and happy and we had no major worries.

It's reassuring that there are school where kids like our DDs can thrive, I think I will visit a few state and prep schools around before we make any decisions.

Thank you so much for your comment, so thrilled to hear about your DS! x

It's hard to not worry about these things when I see DD so anxious and worried about her next day at school. I feel stuck and helpless. We can just about afford the school fees, we are making huge sacrifices only to hear her being so unhappy. 😩

Sounds like it’s the school environment that’s upsetting her.
Have a look at the Not Fine in School website for and the work of Dr Naomi Fisher x

@JustSawJohnny can I ask what your DS's struggles were before it was flagged up?

There are very obvious issues for your dd in the classroom and I would work with the school to try and address these first. If she is feeling bullied and overwhelmed by other kids in the class then I am not surprised she is not wanting to go in and is struggling to do the work. She may or may not have adhd etc but she obviously needs a learning environment that is not there now. I would suspect that if there is disruption in the class then she is not the only one finding it hard.

This! Two ND DS’, eldest hit all milestones and was particularly good at communication and very sociable. He’s only been picked up because he has ADHD as well which is more obvious in a school setting. His ASD hasn’t been picked up but I’m certain he is, although as he has other diagnoses we are not bothering to pursue it.

Youngest we are still not sure about. He is 7.

I know a few other girls are finding it hard but they seem to cope much better. DD is telling me there is another girl that gets picked on (another girl who is calmer and academic) yet this girl puts everyone into their place and is super confident. I know it's hard to deal with these things every day.

Why do you think she is autistic. It sounds more that she has had lots of problems with school and is naturally not enjoying it .
Having a bully in class who sounds like they are getting away with it would put any child off going in.

The school have flagged up that she might be autistic (struggles with social nuances, struggles with noise - not so much outside school, she can be a bit too chatty and doesn't know when to stop etc). She always loved school, she's the kind of child who wants to go out and learn and do things/activities etc.

Im not sure whist signs you’re thinking may be related to ASD, but sounds like there isn’t bullying in the classroom including towards your dd and she is quite rightly anxious about school now and not wanting to go. Everyone’s different and different kids will cope differently with things like this. I’d tackle this first, get the bullying sorted either in her current school or move schools if you think that’s a better option, and then see where she is with everything. You may find once this is sorted she is happy and thrives again.

Nothing huge but I admit that, as an ex teacher who'd taught Asperger's kids, I did wonder before school mentioned it. The early talking, the obsession with trains, the very black or white way of looking at some things etc. He had a few sensory issues (hated wearing socks due to seams) and had been sick on his dinner a couple of times after eating foods with mixed textures (eg kale - soft leaf - crunchy stalk). He can be really freaked by very loud noise etc. He has never stimmed but he does go through stages of picking at his nails and washes his hands a lot when stressed.

School noticed it more as the kids got older as they start to 'conform' to things their age do, both the good and bad things, but DS just point blank refused to go along with anything unless he saw the reasoning behind it. He was quite questioning of certain things at school - never rudely - but he would ask lots of high-level thinking questions about concepts that were being taught basically and would struggle to accept 'that's just how it is' answers.

He doesn't need any help or specific allowances made for him at school. It's not obvious that he has ASD and he masks really well at school or in social situations now but that does have a knock on effect at home sometimes - he really needs home to be his relaxing, safe place and needs down time to recuperate.

I really recommend going private, if possible. If you do go down this path, just make sure you go for someone NHS registered and make sure the assessment includes seeing at least 2 different professionals independently of each other.

Sometimes these things become more apparent in times of stress. Maybe your DD has been masking day to day OK but now there are issues with other kids it is becoming a bit too much for her to handle all at once?