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Dd9 suspect ASD - could do with some opinions!

57 replies

terriblepotato · 22/01/2023 12:19

I posted this over in the SN section but not had any responses. Would love some help if possible (sorry it’s long!).

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’s a very fussy eater compared to her friends. I have a friend whose son is autistic and his diet is way more limited than dd’s so she’s not too bad, but she does eat the same few things repeatedly. Often she will eat something she usually likes and decide it’s not ‘right’ even though it’s exactly the same as usual and refuse to ever touch it again.
  • 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
  • She 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 but we worked through a lot of stuff with the help of a book which was recommended to me on here at the time. She is still an anxious worrier but it has been worse than she is currently
  • She doesn’t react well to plans changing, and needs to know every fine detail if we do something. 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. Even when she’s going through a period of sleeping through the night, she’s shattered all the time. 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 picked up on this a lot more recently as it can be quite subtle 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 dolls house when she was smaller but never going beyond that. 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. 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 flaps 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 brilliant story writer and has a great 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. She gets on fine in life, but I’ve been reading a lot about girls with ASD getting to secondary school and really struggling, particularly with anxiety, so I’m thinking if there is something there it’s worth getting support earlier rather than later?

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:
RomeoMcFlourish · 22/01/2023 12:25

She sounds very much like my DD who was diagnosed with autism aged 5. I would definitely pursue it with the school/GP. The support often doesn’t come easily, we fight almost daily to get our DD the help she needs.

LarryStylinson · 22/01/2023 12:29

Sounds almost exactly like me and my daughter. Both diagnosed autistic. The high need to recharge is because masking is exhausting.
Not majorly important but a lot of us prefer being called autistic rather than ASD. I don't feel I'm disordered. Just that my brain type is different to yours.

Darthwazette · 22/01/2023 12:30

She sounds very much like me as a child and somewhat like my 9 year old son. We both have autism.

I would definitely pursue a diagnosis but be prepared for a fight. It can be a challenge, especially with girls who mask very well.

Interested in this thread?

Then you might like threads about these subjects:

ninjafoodienovice · 22/01/2023 12:30

She does sound like she is on the autistic spectrum. How much the school will help I don't know. If she is compliant and achieving then they probably aren't too concerned. She sounds very similar to my DS10 who we are seeking diagnosis for. He has become more self aware about his difference to others and really struggles with transitions. We are seeing the GP initially with a view to getting a referral for a private assessment before secondary school.
I think you have to ask yourself if you think pursuing a diagnosis will help her. In our case I think it's important in order to access the correct support.

helloisitmeyourelookingfor · 22/01/2023 12:31

She sounds very much like my dd

Diagnosed at 13 following some significant mental health needs

I would advise anyone that suspects whilst their child is a primary school to push for support

Transition to secondary was incredibly difficult without support being in place -or even need recognised

terriblepotato · 22/01/2023 12:36

Thanks everyone for advice so far. Apologies for using ASD, I wasn’t sure what the right words to use were so will just use autistic moving forward, thanks for that.

She’s very similar to me as a child, and as an adult I’m sure I’m also autistic. I have a lot of similar sensory issues and I’m very much an introvert, need time to recharge. Have to really work on being ‘normal’ in social situations, force myself to give eye contact and speak at the correct times/make small talk. My Mum always just said I was shy and came across as very ‘aloof’ as a teenager because I didn’t speak/interact much with people.

I have a couple of friends who have been fighting for a very long time for diagnosis and support for their children, who both present as autistic in a much more obvious/traditionally viewed way. So that’s why I’ve always been in two minds about if she actually IS autistic/is it worth pursuing a diagnosis.

Does anyone have experience with going private for a diagnosis? Is it still recognised by the NHS/school?

OP posts:
WhatsitWiggle · 22/01/2023 12:44

My DD is 14 and we're just starting down the road of ASD diagnosis as she's refusing school due to extreme anxiety and GP suggested there were traits. Having read a lot in the last month, there are so many signs that I either missed or put down to quirks. I remember asking her yr 2 teacher due to her behaviour then and being palmed off as her just being immature.

The sensory stuff is Sensory Processing Disorder. It's a separate diagnosis but often goes alongside ASD.

The uneven surfaces could be Dyspraxia.

Eye contact - watch this carefully. DD will maintain eye contact with me and her dad. But even when you think she's looking at other people, she's not, she's looking at a point just beyond them. So it didn't become obvious until we really observed her.

You need to go back to the GP to get a referral - in my area it's a 2 year wait for the assessment! You can go private but it's expensive.

Schools don't need a diagnosis to provide help. So back to them too to say suspected ASD and SPD due to xyz behaviours and what support can they offer - ask for a meeting with the SENCo.

Also check your council website for family support.

Be ready to fight! The support does not come easily. You need to advocate for your child and be the squeaky wheel.

ChildminderMum · 22/01/2023 12:45

I'm in the process of a private diagnosis for my child as the NHS list here might be 2-3 years - the initial assessment is £250 and then if you go for the full diagnosis it's an additional £1250.

I don't see why it wouldn't be recognised by the school. I'm not worried about the NHS as there isn't any NHS support available post-diagnosis anyway.

Forever42 · 22/01/2023 12:51

No advice but following with interest as she sounds very similar to my 10 year old DD, especially the perfectionism amd the teddies. Also have a history of uncontrollable meltdowns at home. Trouble is, school think there is no issue as she is quiet, compliant and able. I'm not sure if GP or any other services will listen if the school don't have concerns.

terriblepotato · 22/01/2023 12:52

WhatsitWiggle · 22/01/2023 12:44

My DD is 14 and we're just starting down the road of ASD diagnosis as she's refusing school due to extreme anxiety and GP suggested there were traits. Having read a lot in the last month, there are so many signs that I either missed or put down to quirks. I remember asking her yr 2 teacher due to her behaviour then and being palmed off as her just being immature.

The sensory stuff is Sensory Processing Disorder. It's a separate diagnosis but often goes alongside ASD.

The uneven surfaces could be Dyspraxia.

Eye contact - watch this carefully. DD will maintain eye contact with me and her dad. But even when you think she's looking at other people, she's not, she's looking at a point just beyond them. So it didn't become obvious until we really observed her.

You need to go back to the GP to get a referral - in my area it's a 2 year wait for the assessment! You can go private but it's expensive.

Schools don't need a diagnosis to provide help. So back to them too to say suspected ASD and SPD due to xyz behaviours and what support can they offer - ask for a meeting with the SENCo.

Also check your council website for family support.

Be ready to fight! The support does not come easily. You need to advocate for your child and be the squeaky wheel.

Thanks so much for this. Sorry to hear your DD is having a hard time with school.

Actually I have noticed when she speaks to other adults she often will not look at them, or speak towards me rather than the person she’s meant to be answering. She will speak directly to them if I tell her to, but she has to be reminded.

OP posts:
terriblepotato · 22/01/2023 12:55

ChildminderMum · 22/01/2023 12:45

I'm in the process of a private diagnosis for my child as the NHS list here might be 2-3 years - the initial assessment is £250 and then if you go for the full diagnosis it's an additional £1250.

I don't see why it wouldn't be recognised by the school. I'm not worried about the NHS as there isn't any NHS support available post-diagnosis anyway.

Thank you, I was unsure how much it costs. It’s actually less than as I was expecting (I thought at least double that) and I think we could just about afford it if needed.

OP posts:
Choconut · 22/01/2023 12:57

Oh stop with your language policing, autism is literally in medical terms a neurological disorder. Please don't police my use of 'high functioning' either, we all know full well what it means.

I think your list is brilliant OP and I'd definitely say that your dd is ticking all the boxes there. Keep the list somewhere and add to it as necessary as you notice things, it may be very useful when it comes to diagnosis. Around this age is where the social differences really start to show with high functioning kids I'd say. I'd also say that the fact she is very academic is pretty frequently the case with kids with ASD as well. With eye contact I only notice that ds's goes when he is feeling very, very upset/anxious and someone is putting him on the spot, otherwise it's unnoticeable.

When ds was diagnosed at 10 (sounding very similar to your dd) we were told he was going to really struggle at secondary school. It's true that he is very unsociable but he is fine with that, he has spaces he can go to and read and decompress at breaks and he did brilliantly in his GCSE's. He hasn't had any real support though beyond access arrangements in exams, I'm not sure what you're hoping for there but I wouldn't bank on too much (NHS offered a reading list and a course with a 9 month waiting list that was 25 miles away). Schools only really do something if behaviour is terrible or they have a MH crisis IME. So I wouldn't get your hopes up but a diagnosis can really help the individual understand themselves and help others understand them too, it also makes it easier to ask for things to be put in place that might help them ie ear defenders, using a laptop, exam in a small room etc - just don't hope for too much. Goodluck!

Ilovethewild · 22/01/2023 13:11

Op, i to agree that those behaviours sounds like Autism,

one of your challenges may be that school don’t see her difficulties so they may not help or support your progress to diagnosis.

school think in terms of needs and if she doesn’t present with needs they will say she is ok, but your great list will help Gp to refer to assessment.

depending on area will depend on time to diagnosis. I believe it is useful to helping young people know ‘why’ they behave certain ways eg as someone said, the resting at home is likely to be because of coping with masking all day. If you and she knows this you can adapt your expectations and lifestyle to suit.

BlankTimes · 22/01/2023 13:13

If you choose to go for a private diagnosis, pick someone who also diagnoses for the NHS, that way it won't be disputed because the same tests and criteria are used by that firm, irrespective of who funds them.

Your GP should have a list of professionals who work for both the NHS and private clients.

terriblepotato · 22/01/2023 13:24

Thanks again everyone for the advice, it really is massively appreciated.

Re ‘support’ at school - I meant that hopefully they will be more understanding in certain circumstances, for example her crying when the fire alarm goes off, rather than support in the way school would support a child with a learning disability etc. The past few times a teaching assistant hasn’t been very nice to her about it when she was really upset and told her to ‘grow up’. Just things like that. I’d hope it would help her and others understand why she acts certain ways, and maybe make adjustments if really needed.

OP posts:
WhatsitWiggle · 22/01/2023 13:46

Just to follow up on @Choconut , whilst my DD hasn't yet made it into a lesson in 4 weeks, what has been put in place already is:

  • she can miss tutor time as she finds this too stressful
  • eat in the SENco area rather than the canteen
  • spend breaks in the SENco area or library
  • sit next to a friend in lessons (teachers usually mix up the seating plans regularly)
  • have a card to be excused from lessons if it gets too overwhelming
  • leave 5 minutes early to avoid noisy/busy corridors

Obviously, the ideal would have been to have this in place before she started secondary school rather than after she's had a mental health crisis and is burnt out, at the start of GCSEs. It was based on her answers to a EBSR (school refusal) questionnaire so not necessarily autism specific, but if you know what she struggles with (which it sounds like you do), then you can ask for specific things.

WhatsitWiggle · 22/01/2023 13:51

Just seen what you put about the TA - I had similar, both primary and secondary told me she was immature and needed to become more resilient. Because she was quiet in class, got on with her work and hit her SATs and target grades, "none of her teachers have raised concerns".

Absolutechaos · 22/01/2023 14:03

Definitely lots of indicators of possible ND there, particularly autism. I have 2 autistic daughters myself and I see lots of similarities. It may be SPD (but sensory issues are part of autism as well). The interrupting could be ADHD - is she easily distracted? One of my DD is ASD and ADHD and it's a common combo. If you can, try to get a broad based ND assessment to narrow down what might be worth looking into further. In the meantime, given the long waiting lists, treat her as if she was ND eg encourage "down time" to recharge, offer lots of safe foods to eat etc. In reality, an ASD diagnosis won't result in a lot of support so you may as well get started now.

terriblepotato · 22/01/2023 15:48

Thanks again everyone. It’s good to know that I’m justified in my feelings.

OP posts:
PrinceHaz · 22/01/2023 15:53

I would seek 2 diagnoses, one for you and one for your dd. Speak to your GP in the first instance and find out about the wait time for assessment. If, for example, you need to go via CAMHS, you could be waiting forever.
if you are happy to pay for private assessment, the Lorna Wing Centres in Kent and Essex specialise in diagnosing women and girls. If you don’t live in that area, you could make a mini break of it.
www.autism.org.uk/directory/t/the-nas-lorna-wing-centre-for-autism

terriblepotato · 22/01/2023 16:08

PrinceHaz · 22/01/2023 15:53

I would seek 2 diagnoses, one for you and one for your dd. Speak to your GP in the first instance and find out about the wait time for assessment. If, for example, you need to go via CAMHS, you could be waiting forever.
if you are happy to pay for private assessment, the Lorna Wing Centres in Kent and Essex specialise in diagnosing women and girls. If you don’t live in that area, you could make a mini break of it.
www.autism.org.uk/directory/t/the-nas-lorna-wing-centre-for-autism

Thank you, we are in West Yorkshire but happy to travel if needed. I’ll look into it 😀

OP posts:
Jellycats4life · 22/01/2023 16:12

Sounds SO like my daughter at a similar age. She was diagnosed at 9.

Shes now 11 and it’s helped her massively to have a diagnosis and understand herself. There’s a book called The Secret Life of Rose (non-fiction) and the Do You See Me? series (fiction) which are really good.

Singleandproud · 23/01/2023 11:07

Sounds similar to my 13 year old DD, lots of traits I just brushed off as being a bright, only child who spent alot of time with adults but as she entered High School and faced more changes she started to find things harder, because sheis older she is able to explain how she is feeling and those quirks from when she was little started to fit into place.

We are going after a private diagnosis as there is a clinic that specialises in autism in girls in our closest city and an NHS diagnosis is taking up to four years in my area which is ridiculous. I have my initial consultation with the clinic at the end of the month which costs £100 and then if they think there are enough traits then the rest of the screening process will cost £2300. It's expensive but I have a regular saver that is maturing next month so it's not money that I'll 'miss'.

terriblepotato · 23/01/2023 11:51

Singleandproud · 23/01/2023 11:07

Sounds similar to my 13 year old DD, lots of traits I just brushed off as being a bright, only child who spent alot of time with adults but as she entered High School and faced more changes she started to find things harder, because sheis older she is able to explain how she is feeling and those quirks from when she was little started to fit into place.

We are going after a private diagnosis as there is a clinic that specialises in autism in girls in our closest city and an NHS diagnosis is taking up to four years in my area which is ridiculous. I have my initial consultation with the clinic at the end of the month which costs £100 and then if they think there are enough traits then the rest of the screening process will cost £2300. It's expensive but I have a regular saver that is maturing next month so it's not money that I'll 'miss'.

I’m keen to explore it before she goes to secondary. She may get on perfectly fine when she’s a teenager but I think I’d rather have something in place just in case there’s any issues.

I’m going to start putting some money away if I can, in case we do end up seeing someone privately. Hope your consultation goes well!

OP posts:
BlackeyedSusan · 23/01/2023 11:51

Another vote for autism.

I suggest writing a list in categories.
Routine (change, doing things in a certain way, )
Sensory (you've listed loads, put the textured floor in as this is balance vestibular )
Social communication (mention what school has said)

Arrange to see the teacher ask them to think around these areas before hand with email. Give some examples they might look for. Very often lots of minor things don't register with a teacher until you look for them specifically. Or they do not realise the importance of something. (Ex teacher) no Dc was not opening and closing the door to be helpful, but likes watching doors turn) DC screams after music lessons because noise hurts (you fucking numpties)

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