HF ASD in girls

[WindofNameChange]

Have NC’d and will try to be brief.

I’ve felt since a young age that DD(6) may be HF ASD. I should’ve done more but I was scared and keen to agree when DH always said it wasn’t the case.

She is wonderful. Incredible imagination, audacious, outspoken. I wouldn’t change her. She struggles with hypersensitivity (hair brushing, labels.) She still eats play doh. She has some gross motor difficulties - can’t ride a bike - and hyper mobility. She hates getting dressed and seems to genuinely struggle.

She has a reading age of 9 and often chooses to spend playtimes running up and down ‘thinking’. She’s hypervigilant and often controlling. She loves to play but can escalate so quickly if the details of her games don’t go as planned. (Other times she’ll cope well.)
She has one friend but she doesn’t usually go out of her way to socialise nor place any value on others judgements of her (which has its upside!)

She won’t sleep without me, often sleeps very late. Her meltdowns are very panicked but she can escalate quickly with help. She reflects so well after meltdowns - in some ways, she so emotionally mature because she’s so self-aware. Her vocabulary is amazing and she loves her family so much. She is lovely to her little sister. She’s very funny but often gets cross at us if we joke and she doesn’t get it.

I’d love to hear from anyone who has a girl with HF ASD If this rings any bells. Thank you so much. I’ve been afraid to set any wheels in motion in case diagnosis doesn’t help, so any views there would be very helpful. Thank you again.

Lots of bells here, OP. DD13 was diagnosed with Aspergers last summer (not Aspergers, they don't diagnose that anymore, it's now called Austim 1, but it's the same thing). Not identical but many of the same traits. Just wondering though what you mean "in case diagnosis doesn't help"? In what way does she need help, do you think? In our case we didn't need any educational help, but DD has social difficulties and I think having the diagnosis meant she wasn't so hard on herself about them. If you need specific educational allowances, a dx will help you get those. Your DD is quite young yet - does she feel different, is she wondering why she is the way she is?

BTW I don't think this topic is used much, so you likely won't get many responses. You might want to ask MN to move it to a more general SN board?

Thank you ever so much.

As far as diagnosis, I just wonder if there are cases in which it can ever be detrimental? She doesn’t need educational support yet and she’s happy (I mean, she thinks she is. I worry a lot about her anxiety and hypervigilence and she has signs of OCD sometimes. Would a DX maybe help her to get support as she gets older? I’m really worried she’ll end up miserable.)

Will ask to get to moved. Thank you.

Hi there,

Just to let you know that we're moving this to the Special Needs children board as per the OP's request.

My DD is only 4 (nearly 5). She has a Dx but sounds very similar. I mainly see a lot of hyperfocus on topics she is interested in (mainly science and nature), anxiety around transitions, and being happy to do her own thing rather than always trying to fit in with her social group (she does have friends and loves playing with them but I do see that she tries less hard to fit in and join in the group than others do). She thinks her friends are always choosing the games, but actually I think she often is (or, if they're playing something she doesn't want to, she'll go off and do her own thing). She can use self-talk and reflect well on her feelings afterwards, but they can be overwhelming in the moment of transition (e.g. she might say "I can feel that feeling coming again when you go" when she's getting upset about a school drop off).

I also struggled with whether a Dx might have negative as well as positive effects (because DD was perfectly happy as she was), but reading so much from teenagers and young women on the spectrum wishing they had known earlier convinced me it was worth going ahead. I'm sure there are some risks, but I think in the end understanding yourself is a huge gift to any person, and the sooner we can help our kids get to a better understanding of what makes them tick, the strengths and weaknesses, etc. the better.

Thank you Lightripper That makes perfect sense. I’m really similar to DD - reportedly I wasn’t as intense but I definitely felt it, so maybe it was all masking. I think I’d have liked to understand myself better too. There are definite glimmers of OCD and generalised anxiety in her that I think she’ll need support with. Or atleast, that it would be really helpful for her to have.

Some days it doesn’t feel like an issue but I think I’m just scared to forge ahead. It’s a big deal, isn’t it? To really commit to it when you’re constantly reassessing it for yourself the whole time.

I found learning more from autistic adults incredibly valuable in getting comfortable with going for Dx. E.g. YouTube videos by invisible i, Purple Ella (and her friend Ros on the "Autism in Company" videos) and Sarah Hendrickx on what their diagnoses did for them, and reading the #actuallyautistic hashtag on Twitter which should bring up a few people's diagnosis stories.

Like you I'm really similar to my DD too. I don't feel I struggle in adult life really, but I think that's largely because I've engineered it so I don't have to deal with the kinds of situations I find most stressful! I have what many people would consider a very stressful job, but struggle to order a takeaway and luckily have friends who don't mind doing it!

I had never once heard anything about a Dx being detrimental, until not long ago on MN when a parent said her child's dx might prevent them from joining the Army. We found that DD's differences started to be more of an issue more recently as social behaviour in her peer group became more sophisticated, which prompted us to seek the dx. I'm so glad we did it and DD seems happy too. She has a better idea now of where she might fit in, if that makes sense.

Lightripper Me too. Stressful job but still a disproportionate amount of planning to anticipate stumbling blocks and a long recovery time! Sounds very familiar.

Thank you. I think it’s probably time I set the wheels in motion.

Nando I think detrimental might be the wrong word - sorry. I just mean it’s scary entering into it when she’s so little and it’s a lifelong diagnosis. If I’m honest, I’m reading a lot of mixed information about asbergers/ HF ASD in girls and how difficult it can still be to gauge and that concerns me. Although I’m 99% sure it’s just fear of the impact and irreversibility of moving forward, it’s all too easy, on a good day, to say, “Oh who really knows?” and avoid it entirely.

Thank you ever so much.

My dd5 also sounds very similar to yours, with added hyperactivity which we find the most challenging.
I have 3dc, the oldest ds15 is diagnosed asd the youngest dd3 is also going through an asd diagnosis. I am also awaiting a formal diagnosis of asd as I suffered with my own MH problems which have been identified as probable asd umbrella symptoms.
Dd5 mainly suffers anxiety, literal thinking, emotional regulation problems and sensory issues. Her social skills have been extremely good up until a few months ago when she's started saying that she struggles to fit in and feels nobody likes her. Also that she needs time also to collect her stones.
I'm more aware of her difficulties as I still feel them within myself and I also know how exhausting it is masking all the time. I think she does this at school and although I think they are aware of her emotional problems I don't think they have witnessed anything else of concern.
I feel like I am thinking about it most days and becoming more and more likely to speak to her teacher and begin an evaluation process. I'm not so sure that she'd even get a diagnosis of asd, I believe she presents more with adhd but I know they can overlap.
It is difficult knowing what to do for the best sometimes.

Sounds almost exactly the same as I was, except I had delays with reading and writing. I finished school with a distinction in a particular subject, and have been told on numerous occasions by different learned people that I should have been a lawyer.

I've never been diagnosed, and am behind my peers on most major milestones, mainly due to anxiety and an awareness of being 'different'.

www.aane.org/women-asperger-profiles/

GuitarStrings How are you physically? Both me and DD are hypermobile. I’m cross lateral. DD hates getting dressed and is really hypersensitive to clothing... something I’ve been guilty of even as an adult. I’m hypervigilant too. I do spend a fair amount of time wondering if, despite my best efforts, she’s picked a lot of this up from me. She’s really intuitive like that (but again, that’s a characteristic of ASD isn’t it?)

She loves being in her own little world but I do wonder if this is escapism. I do this too. (Also, it’s really enjoyable escapism, so there’s an argument for it to be honest.) To this day, I can disappear into a fantasy life which, in the past, I’ve actually postponed day to day reality just to think about. That’s not normal, is it?

To be honest, I always assumed everyone was like me, more or less. I’m not quite sure how I’d have felt when I was little if I knew they weren’t. I guess I’ve spent a lot time acclimatising so that my personality is like a quirky comfortable skin, but it’s unfair on my daughter to deprive her of potential support and understanding just because I’ve already adjusted. I’m not sure that makes sense! Sorry.

springhappy Wow. That’s a lot to contend with. I hope it all goes as smoothly as possible for you. Five seems to be the age at which social skills really accelerate and I too have noticed my little girl getting left behind. She has one friend but she’s not overly invested and she prefers to ‘think’ - which is mostly stories in her head as she runs up and down.

The collecting stones thing actually rings a real bell with me! And I distinctly remember both collecting and eating the salt crystals laid on the playground when it was icy, somewhat obsessively. Hmm...

I am pretty certain my DD has sensory integration issues too. She seems to be managing them better now, but it’s more likely that she’s just tolerating it until her stress-levels boil over.

I think it’s probably a blessing (on the whole) to understand their rationale for things, although it has its drawbacks doesn’t it? I do quite like it when I spot something immediately and I completely understand her in that moment - it totally changes my reaction. For example, DD has an almost hoarding instinct to not throw things away even, on anxious days, letters etc and whereas my DH wouldn’t entertain it, I totally get it straight away.

It definitely does help when you understand them on their level. It's like you can predict their reaction before it happened and plan ahead.
Yes I wish I'd had support throughout school, I think it would of make things so much better. Even just understanding teachers.
@WindofNameChange My eldest ds15 has always done the running back and forth 'thinking' he does it in his room or outside without shoes. He does it a lot, for about 20-30 minutes 3 or 4 times a
Day. He loves this time and like to be left alone so he can think better. I've always seen it as a regulating thing.

And yes I used to do it too! I never paced or ran (not that I remember) but I did live in my own 'fantasy world' it was a much better place where I had full control and it always has music playing

springhappy Mine too. I often listen to music in order to immerse myself but that gets a bit much. I can’t really cope with music without getting really emotional.

The running up and down seems to really help her but I do worry about others picking up on it. I don’t like to think of her alone on the playground as it’s a bit heartbreaking but I appreciate that’s my projection.

Yes I totally understand how you would worry about how they would be perceived with the running back and fourth in the school playground.
Strangely it never bothered my ds, the only thing that irritated him was if they were playing ball games anywhere near him as it was distracting.

I too get quite deep through music, it seems to unlock hidden emotions and helps at times.

My ds is homeschooled now, we deregistered him about three years ago as we realised that the school environment was too overwhelming for him and for him to be able to cope he would've been missing half of the activities and having time out.

I'm hoping my dd'ss will manage to be educated through school if possible.

It's such a rocky road trying to do what's best all the time. I think the fact you analyse and question things to make sure you are doing the right thing shows what a fantastic and thoughtful parent you are. I'm sure she'll be just fine with the support you have for her

That’s a lovely thing to say, thank you. I was just thinking the same about you.

Thank you so much for all your really valuable insight. Hugely helpful and reassuring.

I wanted to add that in my experience I feel it's very hard to get a diagnosis of asd unless the specialists are completely certain. I think borderline cases would probably be dismissed unless it was impacting in day to day life. I don't actually think my dd5 would be diagnosed yet, but imagine in a couple of years she may present with more difficulties.
Currently I think she displays with more Sensory Processing Disorder. Which is part of Autism but can also be standalone or part of other disorders.
Also wanted to add that whilst my dh does 'see' the issues with dd5 that are concerning he has an ability to be dismissive and not overthink like I do.

@WindofNameChange - when I saw your original post it was a bit surreal as I felt I could of wrote it :) I wouldn't wish anybody to have to worry about their dc in any way but on another note it's nice to know we're not alone

My DH and I were discussing this tonight. There must be so many children who are close to but don’t quite meet the threshold - what happens there? (I suspect we
might be there).

I do worry about her anxiety. I remember as a child feeling the same anxiety but I never called it that - it was part of the fabric of my thinking and I’m not altogether sure what could’ve been done.

DH has been a little dismissive, but then as someone with all the anxiety traits and over-analytic thinking associated with ASD, I often wonder if maybe it’s just me.

Also, DH seems to be able to understand all the facets of DDs personality that I don’t - it’s like she’s a real 50:50 split, so he doesn’t worry about a lot of the aspects that I do and vice-versa.

springhappy Absolutely. And it’s nice to hear the little details. In one way, I like the idea of these little girls prioritising making up stories and collecting stones. There’s so much to love in there. DD amazes me a lot of the time.

Yes that's totally our situation too with dd.

Dh will play down her reactions sometimes and say yeah she's got out of the wrong side of the bed or oh dear somebody is tired and grumpy. In my mind she's having a pure meltdown and unable to function and I need to help here ASAP. I think somewhere in the middle is about right.
I understand exactly what you are saying. I believe if you edge over to the spectrum you develop an intuition to recognise the instincts and reactions in others. It leads you to protect other people without even being aware.

I'm not sure exactly what would happen regarding assessments/diagnosis through the school pathway.
In my experience I've always started intervention before the age of 3 and that was through the health visitor who referred to paediatrician, who assessed every six months until they felt they had enough evidence to warrant a diagnosis. They then referred to a diagnostic centre or specialist. A very lengthly process with lots of professionals involved who do a lot of assessments and general observations at school.
I'm planning to talk to dd's teacher next month casually at parent evening and tell her our concerns and see if they have any they can share. I will then ask her for recommendations.
Anxiety is also our hallmark concern with dd, it was mine growing up too. I think it causes some wide eyes from others as the fears are very irrational and constant.
Santa, Hand dryers, bones, wind blowing things away, certain movies, random people, food etc... I think the anxiety alone would warrant further investigation just to ensure that it is recognised in school as I think the support would be very much needed.
I can imagine the paediatrician noting the sensory and anxiety issues and then watching and waiting for some time, but just through evaluations I think support would a be recommended as a first line intervention.
It would only help I'm sure.

Yeah absolutely!
I wouldn't change any of my dc, they are so super special, deep and purely perfect.
It's just that the world is a little bit noisy and unpredictable for them sometimes.

My dd will sit in her room for hours arranging her desk with the stones :)
I clean it when she's at school and I have learnt to keep everything in its place
Whilst I may find her quirkiness annoying at times I absolutely love it deep down as long as she's happy.

Have a look at this thread OP and anyone else who is wondering about starting the diagnostic pathway.

www.mumsnet.com/Talk/special_needs/3507873-Benefits-of-a-diagnosis?msgid=84944431

People assume it'a a quick and easy process, but in actual fact an NHS diagnosis can easily take 18 months to 2 years or more depending on where you live because the system is overloaded and the assessments are usually carried out by multi-disciplinary teams.

OP, your dd is only six years old, but she is different enough to her peers for you to have concerns.
e.g. The running up and down seems to really help her but I do worry about others picking up on it
It could well be her way of dealing with overwhelm. She's been bombarded with unwanted sensory input and demands since she got up, come breaktime, she's trying to deal with that and knows if she can't get some 'space' she'll likely meltdown or shutdown, so it's her way of shutting everything else out (especially unwanted unstructured social contact) until she can reset her coping mechanisms.

The older she gets, the more demands she has on her, the more her differences will appear. From reading your posts I'd recommend you start the diagnostic process now. IF she has autism, she has autism and will always have autism whether she is diagnosed or not. the diagnostic process cannot make her autistic. The thread I linked to above explains why a diagnosis can help.

That’s a really good point, thank you.

Okay. I will get started.