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HF ASD in girls

39 replies

WindofNameChange · 18/02/2019 00:27

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.

OP posts:
WindofNameChange · 19/02/2019 08:44

So now I’m just wondering where the hell I start?! GP?

OP posts:
WindofNameChange · 19/02/2019 08:57

School aren’t really too fussed so I haven’t yet had any dealings with the SENCO. Should I start with a meeting? I’m also really keen to see how she engages at break times - ie: is she constantly stimming or is she mostly milling around? Would it be reasonable to ask to pop in at dinner time to observe?

OP posts:
LightTripper · 19/02/2019 10:14

I've identified with so much on this thread (about my DD and myself). Our kids really are wonderful people and I do think it's critical to do everything we can not to let their uniqueness be squashed out of them (I guess it is squashed out of everybody to some extent, but at least to minimise that).

Anyway, it's been lovely to read and identify so much.

Thanks for the link too BlankTimes. Although I worried a lot about getting a Dx I do feel much better now we have one, knowing we don't have to worry about DD maybe masking and taking a long time to get a Dx later if/when she really needs some more formal support. And in the meantime I think it has really helped how we parent her - we might have tried to "mould" her into "norms" of joining in and doing what other kids do much more if we didn't know she was autistic.

LightTripper · 19/02/2019 10:17

I would probably talk to the school first as it will give you potentially useful feedback. After that GP would be the right route here - but I think it varies between different local authorities.

BlankTimes · 19/02/2019 11:39

I'd agree, school first. Maybe her teacher initially if SENCO hasn't been involved up to now? some are great, some are abysmal and most are in-between.
IF they say things like she doesn't have autism, ignore them, they are not qualified to diagnose. Deep breaths and continue without them.

My dd flew under the radar at primary school because she was academically capable and not disruptive in class so school "didn't see" anything and weren't interested in supporting her at all as they were happy for her to be average and quiet, plus she has several other conditions that they ignored as well, so I had quite a battle to even start the dx process.

It was a long time ago, but even nowadays some people are really given the runaround and bounced from pillar to post initially, so you may want to prepare yourself for that.

Does your dd have or do anything mentioned in this booklet? If so, make a note of which ones and include that, alongside your observations that you've outlined on here with your initial request for dx.
www.falkirk.gov.uk/services/social-care/disabilities/docs/young-people/Making%20Sense%20of%20Sensory%20Behaviour.pdf?v=201507131117

It can be a very long process, please continually reinforce and make sure your daughter understands 'different' is a good quality to have, autism is NOT a deficit nor is it a statement that she's less than her peers.
This comic may help to explain 'the spectrum' which is as far from linear as it gets.
the-art-of-autism.com/understanding-the-spectrum-a-comic-strip-explanation/

WindofNameChange · 19/02/2019 14:07

Okay. I’m still scared so I keep slipping into comfort-zone denial but objectively, I know this is the right thing to do so I’m just going to crack on without analysing it anymore.

Thank you so much to all of you for your help. It was feeling like a very lonely place!

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WindofNameChange · 19/02/2019 14:08

And Blanktimes I’ve read everything you posted - thank you. All of it rings true. Is it common for the issues to be sporadic? In the past, I’ve used the inconsistency to reason that’s it’s not an issue but I assume that everyone has good days and bad days?

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LightTripper · 19/02/2019 15:49

Definitely true of my DD. She has periods when everything seems very easy for her and then others when certain things seems hard or she is clearly just totally exhausted by the end of the day. I suspect that's just human nature but more visible on the spectrum.

WindofNameChange · 19/02/2019 16:34

Yeah I often feel like everything is magnified. I even know a week in advance if she’s coming down with a bug because everything goes to pot!

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LightTripper · 19/02/2019 17:31

Yes yes yes!
You see I always assumed this was true of everybody (also for me) - but maybe not?

BlankTimes · 19/02/2019 19:45

You're very welcome Smile

Re the issues being sporadic, yes, a lot of that, it often depends on what else is going on as to what manifests at that particular time.

I often think of it as a narrow-necked bottle, full of different coloured bubbles, each colour representing a different trait or behaviour.
How hard and how often the bottle is shaken is the determining factor on which bubbles come to the surface and what size they are and how long they take to sink once more.

The key to making life a little smoother is to identify the stressors or demands, usually called triggers, that cause the most anxiety and lessen them for her if you can, it's not always possible but it helps. She may well need longer to recover from a stressful incident than you think, but that's okay, it's important to let her take her time.

I hope the diagnostic process goes smoothly for you and your daughter and that it will provide any help she needs in the future.

Lougle · 19/02/2019 23:18

For DD2, I first raised concerns when she was 3 that something was different, and then sincerely at 5, and it's taken until she was 9 to get a referral to CAMHS and 11 to get a diagnosis. If I had been more sure of myself and ignored the schools, I might have got it through earlier, I suppose.

DD2 needed that diagnosis, and we did, so that she can understand herself. For instance, yesterday, when her phone rang and she ignored the group video chat from her new school friends, I asked her why and she said that she'd missed the call. I suggested she rang back, but she shrugged her shoulders and said "They'll be busy on the call, and anyway, I think I'm just anti social".

I explained that if her friends were making an effort to call her, and she keeps ignoring the call, they'll soon stop bothering. So I suggested that she should send a message saying "sorry I missed your call, happy to chat".

She did that, and got added to the call. Then she was sending me messages, telling me issues she was having with the call. I was able to guide her through it. Her friends were playing Roblox, so I told her it was ok to log on to Roblox, too, and join in, even though her laptop had been switched off.

DD2 needs that step by step help with social situations, and having her diagnosis has helped her to understand why she needs that help and be ok with it.

MordecaiOShea17 · 26/02/2019 09:25

@WindofNameChange and @springhappy. I've only just seen this thread, but wanted to add that the escapism/fantasy life/intensified by music thing sounds a lot like immersive daydreaming/maladaptive daydreaming disorder.

See: www.theatlantic.com/health/archive/2015/04/when-daydreaming-replaces-real-life/391319/
daydreaminblue.freeforums.net/?fbclid=IwAR2f7yxFQfSZZ68rCqRbJg2UhqAGGkWNcySwmflD5DQE2xkkRoEtxO-G0qI

I've done this all my life. It's a coping mechanism - at times an unhelpful one. But it also keeps me sane when I'm struggling to understand my (probably autistic but no diagnosis yet) daughter.

springhappy · 26/02/2019 09:43

@MordecaiOShea17 thank you for the link - that would make lots of sense as I was doing it almost constantly when I stopped smoking and at other times of high stress.
I will have a read.
I believe that is what my ds does too.

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