Please or to access all these features

SN children

Here are some suggested organisations that offer expert advice on special needs.

DD9 potential ASD? Could really do with some opinions.

5 replies

terriblepotato · 22/01/2023 01:12

Apologies as this is probably going to be long but I could do with some help with my dd.

My dd has just turned 9. She is lovely, very bright and doing well at school, but a recent incident has pushed me to wonder if I should pursue a diagnosis/extra support.

Her teacher left me a message a couple of days ago saying she was quite emotional/upset at school this week and wanted to know if she had mentioned anything to us. He said he had spoken to her and she said about her friends ‘looking at her funny’ and raising their voices at her. This is something she had been upset about after school earlier in the week, and she often tells me she thinks everyone hates her. This was mentioned by her teacher back in year 2 who said they thought she had some problems misinterpreting social cues, as she often thought her peers and teachers were mad at her/unhappy when nothing was wrong. They said they would try and get some extra support for her but it never really went anywhere. She’s now in Y4.

I didn’t get to speak to her teacher as I’ve been working late but I’ve emailed and basically explained that I suspect she has some neurodiverse behaviours (sorry if that’s the wrong term) and I assume she masks very well at school. I’m worried that he’s going to brush me off as an overbearing/anxious mother and say her behaviour is just normal 9 year old stuff but I’m not sure… I have suspected this for a very long time and did actually go to the GP when she was very small and the doctor was very dismissive.

The following are behaviours which I don’t think are neurotypical so would love to hear what others with more experience with ASD think.

— Dd was a late walker (20 months) and always had some sensory issues around uneven surfaces. For example, even when she was a toddler we couldn’t go to soft play as she would freak out at the squishy floor underneath her feet. She still hates uneven surfaces or anything which makes her feel unsteady. Terrified of escalators and struggles with stairs (has to hold on for dear life to the hand rail). Has only just started to use the slide and swings at the park but does panic if it’s too high/goes too fast.

— Very sensitive to noise. She really struggles with unexpected noises. I’ve never been able to use hand driers in toilets for example. She panics if a noisy motorbike goes past and will slam her hands over her ears. If the fire alarm goes off at school she gets distressed and cries. Many more examples but you get the idea.

— Sensory issues around clothing and how things feel. I have to cut the labels off all her clothes and there’s certain things she won’t wear at all. Really panics if her hair is wet after going in the bath and it touches her skin, for example.

— very sensitive to smells. Will refuse to go somewhere or have to leave it somewhere smells ‘bad’ to her. We had this earlier in a cafe which smelled slightly of fried food and she had a bit of a meltdown because she found it so disgusting and we had to go elsewhere

— she has always been a terrible sleeper since being a baby. Will often still wake in the night and has to be patted to sleep by a parent

— can be very anxious. This seems to be bad for a while then get better again, so comes in waves. Was particularly bad during covid times

— doesn’t react well to plans changing. I’ve got into the habit now of talking her through every plan we have, where we are going, who we will see, what they will say etc, as it relieves her stress and anxiety somewhat

— she’s very much a homebody and would happily not leave the house for days if I let her. She loves to ‘chill’ and have a lot of downtime which seems very different to how her friends are

— related to the above, she’s exhausted all the time. So she will go to school and just be so tired every day and need to spend time alone not doing much to recharge herself. She wouldn’t cope well with doing more than one activity in the day, for example. So an hour or so trip into town to run some errands would mean she would struggle doing much else outside of the house that day

— she’s a stickler for the rules and is completely incensed if someone isn’t doing something ‘right.’ She doesn’t understand that someone wouldn’t follow the rules and often gets caught up in trying to tell people they aren’t doing things the right way

  • she’s very sensitive in general and very empathetic, especially struggles when her friends are upset or hurt
  • very much a perfectionist and gets extremely frustrated when things aren’t perfect

— I’ve noticed this a lot more recently but she constantly interrupts when you’re speaking to someone. She’s generally quite mature and has a good understanding but can’t seem to grasp when she should speak during a conversation etc

— her ‘play’ for quite a few years has involved setting up or sorting out toys but not traditionally playing with them. She has a desk and loves organising her things, or setting up scenes with her teddies, setting up a den etc. I joke that her dream job would be to set up the fake rooms at IKEA!

— I’ve only just learnt this can be a trait in girls, but she is obsessively attached to her teddies. She has tonnes of them and her most special ones are precious to the extreme. I often think she really does believe they are real living things, which I know sounds bizarre! It seems to be getting more intense as she gets older. She loves teddies and would have the house full to the brim of them if I allowed.

— she has an incredible memory which really does amaze me sometimes. Her dad is the same (I do suspect he is ASD too). Not sure if this really is a trait or not?

  • she’s often very literal but on the other hand she has a great sense of humour and understanding of jokes

— I’ve only just realised this but when she’s happy she does what I think may be some sort of stimming. She jumps up and down and waves her hands a bit when she’s excited (way more than I’d expect a 9 year old to do), and I can tell when she’s really happy because she will sing constantly

Those are most of what I can think of at the minute, but on the other hand she finds it easy to make friends, is very popular at school and interacts well with her classmates. She’s very academic, is a fabulous writer and has a brilliant imagination. No problems with making eye contact etc, so a lot of the more obvious signs when I’ve read about ASD aren’t there. But when I’ve researched more into girls with ASD I think she ticks a lot of boxes.

Again, I am sorry it’s very long and thank you to anyone who manages to read it all. I do think her teacher will brush it off, but I’m keen to help her as much as I can. Any advice would be massively appreciated!

OP posts:
terriblepotato · 22/01/2023 01:15

Sorry the formatting of my message has got a bit weird with the bullet points…

OP posts:
terriblepotato · 22/01/2023 01:18

I forgot to add, she’s a fussy eater but not super restricted. She knows what she likes and what she absolutely doesn’t, but is seen as very fussy compared to her peers. She will sometimes try new things but 9 times out of 10 will have a very strong negative reaction to them. Will happily eat something for weeks then suddenly it’s not ‘right’ and she won’t touch it again.

OP posts:
GretaGarbled · 22/01/2023 18:08

Your DD's challenges sounds a lot like my DD, and I think you have to trust your own instincts that she has neurodivergent traits at the least. FWIW, my DD fell short of the threshold for ASD (although would have been assessed as a-typical autism under the old scale), she has strong ND traits and they said closest 'label' was Sensory Processing Disorder.

Whether it's worth getting an assessment depends on what you want to do with it. One thing I didn't realise before, is that an assessment/label is completely separate to the school making accommodations for her. If she has sensory or any other needs then the school have to accommodate her (eg Flare earplugs and light filtering glasses have been good for my DD).

The assessment would be partly to give you both more of a grounding of where and who she is, and to access any more specialist provision if needed. If going via NHS though the wait is v long.

Toomanyminifigs · 23/01/2023 18:52

Your DD sounds a lot like my DS. He was diagnosed with autism at 9. You know your DD best and there's no harm in getting the ball rolling and getting her on the pathway to an assessment. If you decide further down the line to withdraw her then you've lost nothing.
I would say from your list of concerns, it would be worth looking into.

Where I am, the current wait for an ASD assessment is 2-3 years. My concern for your DD is secondary school. It's quite common for some children on the spectrum to 'get by' at primary school but secondary can be a whole different story.

I found that my DS's social differences/difficulties became much more marked from YR5 onwards. He's 13 now and still plays with toys.

The anxiety thing is also something to watch for. My DS wants to be 'perfect' and it's incredibly hard on his mental health. There is some new research to suggest there's a link between eating disorders and ASD. I'm not suggesting any of this will impact on your DD.

I do think that IF she is neurodiverse, a diagnosis can be helpful for her to understand why she may find certain situations more challenging. Secondary school will also have a duty to make 'reasonable adjustments'.

Worriedpal37 · 24/01/2023 08:56

Hey OP

Our school Senco put it quite well I think. She said that everyone is made up of jigsaw puzzle pieces, if the threshold for having autism is 35 pieces of autism traits then some of us will only have 20, whilst others will have 40. So whilst your daughter could have lots of ASD traits she may not necessarily ‘qualify’ as being on the spectrum. But like others have said this doesn’t stop school putting extra support in place or even asking for the educational psychologist to come and observe your DD and offer some suggestions. He/she will also write a report.

One thing I would also say is it’s never too late to voice your concerns, push for support or even going to panel (assessment for autism). It can only empower your daughter by getting her the support she needs and education and understanding of who she is and why she might sometimes feel different.

sending hugs, find yourself another parent/friend who can relate, join groups and read books.
It’s such a lonely place to be sometimes, I think you sound like a wonderful parent by the way.

New posts on this thread. Refresh page