Dd9 suspect ASD - could do with some opinions!

[terriblepotato]

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!

Great advice, thank you!

@BlackeyedSusan ive just googled vestibular balance and this is her down to a tee! So thank you for that, I’ve always known she was different with physical things such as climbing etc, but never known what would actually cause it.

“Some children may be hypersensitive to vestibular stimulation and have fearful reactions to ordinary movement activities (e.g., swings, slides, ramps, inclines). They may also have trouble learning to climb or descend stairs or hills; and they may be apprehensive walking or crawling on uneven or unstable surfaces.”

She sounds very much like my nine year old son, diagnosed autistic last year. He also has SPD but this can't be an official diagnosis as it's not in the medical manuals. For us the occupational therapist assessment that we paid for was far more useful in getting the school to pay attention than the the assessment for ASD. If I were you and money were no object, I would pay for the ASD assessment because the NHS waiting list could be years long, and pay for separate speech and language and occupational therapy assessments.

This is a great book if you'd like an overview: Autism: How to Raise a Happy Autistic Child g.co/kgs/yxoNwr

I would definitely get her assessed OP. Our private assessment was £150 for the initial appointment and then just over £2000 for the full assessment which took numerous appointments.

We’re now getting an EHCP.

It’s helped a lot though, no more ‘toughen up, be more resilient, you’ll just have to cope, grow up’ comments from school. Bastards that some of the staff were, I’ll never forgive them and may make a formal complaint about some of them. Now there’s all sorts of adjustments and they couldn’t be sweeter. Waiting 2-3 years for assessment wasn’t an option with attitudes like that, my child would have been destroyed.

many many pre and post diagnosis sessions run by Neurodevelopment team and Occupational therapists.

for added input (or lack thereof in our case) try proprioception too. does she know where parts of her body are in space? (sometimes we have to look where hands are. )

interoception might be buggered as well. (can't tell when need loo very well, or hunger, or thirst, or where it hurts when unwell. possibly? ) google.

Bastards that some of the staff were,

precisely.
some are a bit uneducated about autism, some are in denial, some are actively negative about it.

I might not have formally complained but did ask a question of the lovely sen team about how they were going to ensure dc's needs were met if they were gopoing to be punished for being disabled.

A lot of the things you’ve said hint that your daughter may be autistic. It also sounds like she has ADHD, esp if she is sensitive to rejection.

I had 30+ years before I was labelled autistic and as having ADHD. My peers were far more accepting of me and my differences when I didn’t have labels that meant most of society no longer viewed me as one of the gang.

My daughter is a mini me and I’m avoiding labelling her as I feel it comes with far more disadvantages than advantages

I’m sorry you feel like diagnosis has hindered you @GSARZT. Why do you think your peers took it so badly when you were diagnosed in your 30s? I mean, presumably very little about your behaviour or personality changed pre and post diagnosis? You were still the same person, just with more knowledge of who you were?

Maybe it’s because society is just deeply ableist. If so, I get that.

I take umbrage with the “labelling” narrative though. It’s not a label, it’s a diagnosis. It’s not an excuse, it’s an explanation. And, being really frank here: neurodivergent kids will get “labelled” by people they encounter no matter what, except it’ll be labels like oddball, weirdo, scatty, lazy, loner and so on.

Refusing to get your daughter assessed won’t make her any less autistic or ADHD - instead she’ll be navigating life without the self-understanding or the coping tools to get by in a neurotypical world.

Agreed - very well put. Self understanding will help her to navigate life.

Thanks @PrinceHaz

My daughter is also a mini me and I was desperate to get her an autism assessment so she wouldn’t have the same life as me.

I spent nearly 40 years blaming myself for being too weird, too awkward, too quiet, too stand-offish, too unlikeable, too anti-social, too geeky… you name it. I have known in my bones all my life that I was different but I never understood why. So I’m going for an assessment at 42.

@Jellycats4life @PrinceHaz

As a child I was labelled as clever and a high achiever. I became a teacher (as I loved education) and was quickly and consistently promoted until I was open about being diagnosed with a stigmitised identity. My autistic husband is a senior manager, overseeing over 30 staff. Based on our own childhoods and how she's now viewed at the local school nursery there's no evidence to make us believe that our daughter would be labelled as an oddball, loner etc.

Autism is medically diagnosed using a deficit based model.I don’t believe a medical report that views her as a list of deficits would help my daughter to understand herself. I suspect its far more likely to damage her self-identity and self-esteem.

I believe its far more important for the people in her life to be open about their wellbeing and how they manage their needs. For example, I often explain how I'm having a no socialising day after a social event as I need quiet time. Her dad is open about the fact that he avoids shopping centres at peak times as he finds the environment overwhelming.

I'd say yes too. In our area £1-1.5k would be about right

@GSARZT So she’s preschool age right now? Tbh, when my daughter was that age I had no inkling that she was autistic (although I did know in my gut she was a little “different”). You may find, as I did, that as the social demands of school increase - I find the jump to y3/Junior school quite big - that’s when they start to stand out a little. You may not - time will tell!

You’re right about the deficit based model of course. I think of it in two ways: my daughter does have social-communication issues, and sensory issues, and it’s helpful to understand that these “deficits” aren’t failings or flaws. They’re because she’s autistic. There’s a comfort in knowing that and no longer blaming or hating oneself for it.

You can also counter the deficit based narrative by raising a child to be proud of the strengths that they otherwise wouldn’t have if they weren’t autistic. I love my daughter’s smart brain, and endless capacity for special interests, and amazing long term memory, for example.

Hi, she sounds like she would definitely benefit from an assessment. I would strongly advise that if going private is an option that you do this as soon as you can. NHS services are slow and there has to be pervading issues across school and home, teachers do not see those who mask or have friends as having autism- professionally I’ve seen children who I would suggest do have autism not being diagnosed for this reason. Masking doesn’t seem to be as recognised.

Personally, the difference getting my child a diagnosis has made has been life changing. It has made decisions about secondary school so much easier. He has had just a few reasonable adjustments in school which have made such a difference to him, it has meant teachers stop pushing him to do things to ‘build his confidence’ which was very stressful. His teachers disagreed that he had any autism traits but he is a brilliant masker. I could go on and but we really wish we had got the diagnosis a few years earlier. He is absolutely thriving now as he is understood.

Assessments are as much as £4k in certain parts of the UK post covid.

@Jellycats4life

As we're very open about our needs and have never made our daughter feel ashamed of her way of being we've known from the start our LO was like us. In her second week at the school nursery one of her teacher's explained that she happily plays with others when she isn't fatigued but as the week goes on and she becomes tired she becomes socially withdrawn.

We don't see needing time on your own when you're tired as a deficit as a lot of the population are the same. As it wasn't a big deal we haven't taken her along to any SEN meetings or made her attend any medical appointments. We simply discussed how both mum and dad manage our need for quiet time alongside the demands of day to day life and spoke to her about her options. As she feels in control she’s really happy and I haven’t had a single morning where she’s cried and not wanted to go to school.

Having a diagnosis and being treated as having additional needs may be the right route for some but for others it’s could cause irreparable damage.

Im just starting ASD assessment for DD who is 13. Its s 2 year NHS wait here so am going private. I paid £250 for an initial consult for DD with a psychiatrist for severe anxiety and PTSD. The psychistrist said she thought DD could be autistic and sent me 3 lots of questionnaires to fill in (2 for school, 1 for me ) .
After looking at the results she recommended DD be assessed. I have the first session this week / 3 hours on my own, then after that DD will have 2 further 3 hour sessions. It is £500 per session! Ive had to take a loan out to do it ( lone parent, average salary)
But it will mean DD will get extra support, she hasnt been to school for 9 months so really needs the help.

For those who have had children assessed when older, did you speak to your child about it at all? I’m going to try and arrange a meeting with her teacher, and have looked into private assessment (specifically Lorna Wing Centre to the tune of £3k 😳May have to save up for a year first!) .

If we did go down that route, at what point would you speak to your child about it?

@terriblepotato I used to be a TA and then went into teaching so have always been open about talking about various additional needs at home so she was aware from an early age.

When she moved up to High School last year she struggled with the change, she would bottle things up but then just emotionally burst, not destructively but lots and lots of tears and would say how she's exhausted being someone else to the point she'd nap after school, how awkward it is when her friends conversations don't stay on topic (stick to the script in her head). Why can't people just behave? - although she felt like that at Primary too.

I always thought she was fine with routines although knew she didn't like surprises or spontaneous things, she describes it like if plans change and things get removed from her day that's fine but if plans change and suddenly were doing something else different or in addition to what we had planned "that's not what I signed up for" ie she hadn't mentally prepared herself. She started to find Supermarkets intolerable and last time she went in was crying in the aisle because of the noise, for the time being noise cancelling headphones are giving her some independence back but I'm wary of them desensitising her more.

When she started mentioning some of these things (along with her younger quirkiness) it started to ring bells so we both did the online Autism Quotient test and she came back with a really high score. At the time I explained that if she wanted to we could go to the GP but it could be a long wait or we could wait and see and go private but would have to wait until this year for my regular saver to mature. She was fine with this and was happy to go about her business knowing that the things that made her 'weird' might be autism. Around Christmas this year things deteriated again and she started having panic attacks and wants to know "whats wrong with her" so that has spurred our private consultation forward.

I've told her that if she gets a screening test then it's negative and looks at all of the things you can't do or are bad at and she turned round and said "well I'm good at lots of things, but I know I'm not great at these things it's why I want to be tested so that doesn't matter".

In terms of school DD is a high achiever with exemplary behaviour (would rather be buried alive than ever break a rule) so I know she would be flying under the radar. I gave the SENCO the heads up we were going for a private assessment, I gave examples of why I thought it was appropriate and she was happy to support that and she contacted DDs teachers to get some feedback incase I needed it and asked if there was anything they could do to be supportive in the meantime.

She sounds SO like my DD, you've put together a very good list of all the subtle traits which aren't always easy to define. My DD is 10 and we've just started the assessment process with a paediatric consultant for ASD, although I also suspect ADHD.

I have been really unsure of when and how to explain the assessment to DD. We were seeing the consultant for DD's Tourettes (already formally diagnosed) and the consultant said they suspected ASD. I wasn't sure how to explain it to DD so have said that the doctors are interested in how her brain works, what makes her who she is, and that they will ask her lots of random questions.

DD asked me tonight how you're supposed to know when to make eye contact with people and that she finds it hard. Your comment about your DD making eye contact struck a chord, I asked on here recently if it was usual for a child with ASD to make more eye contact with their parents than with other adults. DD said tonight that she finds eye contact with children easier but much harder with adults 'as they expect her to understand the eye-contact rules'.

Regarding the audio issues, take a look at Flare ear buds. DD struggles with classroom noise/cinema etc. and Flare have tiny, children's ear buds that don't block the noise but channel it to reduce the impact. DD also has ear defenders for very noisy places like the pantomime (and seems to not give a care that she might look 'odd').

Meant to also say that we're going private to see a psychotherapist who specialises in working with neurodiverse young people as DD has increasing anxiety. Since starting year 5 there's been a sudden separation anxiety at going into school, plus meltdowns at having to shower, make certain decisions or cope with something like her leggings 'feeling wrong'. We can't wait for the NHS referral lists, DD needs support now.

She sounds like a combination of my DS and my DD, both are Autistic . The eye contact can be subtle, DD looks like she's looking at someone but she's actually not focused on the. DDs teacher was surprisingly supportive of us seeking a diagnosis despite no issues or signs at school though she had worked a lot in SEN schools so very experienced. I realised DD was Autistic because of similarities in the way she behaves with her brothers behaviours, but a lot more subtle. Girls are often diagnosed later, the start of high school can be a real tipping point due to increased social complexity. The process can be a long one, much better if possible to start before their are major issues. You may well need someone who is experienced with Autistic girls who mask well, not all psychologists/paediatricans have the same skills in this area.

In terms of eye contact, I always thought DD made eye contact with people until last week when she said more often than not she looks at the cheek bones or eye brows, she says she can make eye contact but it feels wrong.

Yes, DD said it feels wrong. She's always counted people's features (number of eyes, eyebrows, a nose, lips, different points for amount of hair etc.) so I didn't spot she wasn't making proper eye contact with other people. If I wear patterns on my clothes they distract her so she can't look at me until she's finished exploring the pattern.