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12year old daughter & ASD assessment HELP

9 replies

KcEliMa · 09/06/2019 19:46

Hello!

Looking for advice and opinions on my daughter pretty please.

Theres always been something not quite there with my daughter.

She’s never been able to make and hold on to friends,

She’s always been a constant worrier,

She’s extremely emotional and unable to control these; when she’s sad, she’s very tearful and inconsolable, when she’s happy, she’s over the top ecstatic. She will become happy or extremely sad when least expected.

She’s always been happier having one solid ‘mother hen’ type friend but fails to hold onto these.

She’s extremely anxious in situations with too many people around,

She can’t handle new experiences

In the last week, new revelations have come forward; she’s been suffering with panic attacks. When walking on her own, from class to class or feeling/ being alone in unstructured times (break and lunch) she’s overcome by this gut-wrenching, overwhelming fear and when she explained what happens, I knew it was panic attacks. She’s now at a point where she doesn’t want to leave the house and go to school. She has had issues with friends (again) so I know this is a factor. She is receiving help for her anxiety at school, but the school nursing team have revealed to me that, whilst they have seen an improvement with how She responds to the nurse herself, what they can offer isn’t enough, there’s something more. She’s being referred on for her anxiety issues.

However, I think theres more. I think my darling girl is on the spectrum. She’s 12 years old, in her first year at high school and, since starting year 7, all the issues that have been lingering and not quite right have exploded into being.

Shes unable to socialise; when she does make friends, she doesn’t know how to behave around them. She goes into fits of hyper (talking fast, loud, ‘large’ movements, bouncing jumping etc) during unstructured times when amongst her peers, which she is aware her friends find ‘annoying’ but she can not help it.

Shes extremely shy, thinks so little of herself, the learning support officer at school has never dealt with someone who is so down on themselves. She hates the unexpected, being known to cry when asked a question in class without voluntarily offering the answer.

She is, however, extremely gifted academically. She’s in top set for all her classes and teachers can do nothing but praise her abilities, the only feedback they give is that she is extremely quiet and shy and doesn’t voice herself enough. She’s very creative and one of her comforts is to draw these beautiful pictures, usually depicting a very sad girl however.

We have a doctors appointment Thursday. Whilst the anxiety side of it needs dealing with, I want to mention the spectrum side of it. I think I have grounds to believe this is the underlying matter and the longer it goes undetected, the worse it’ll be. But I’m wondering am I right to feel this way? Do I have the grounds to think it is possibly ASD?

My 7year old son was diagnosed at the age of 5 and the help came to us. Having to chase the support etc is so new and slightly overwhelming.

Any advice would be so greatly appreciated. Thank you so much.

OP posts:
openupmyeagereyes · 09/06/2019 19:58

Your poor dd, she’s having such a difficult time.

If you haven’t already done so, I would fill out one of those check lists for autism in girls and take it to the GP with you (assuming she scores over the threshold). I think because you have a ds with a diagnosis her odds of also being autistic are higher so hopefully the GP will take you seriously.

KcEliMa · 09/06/2019 20:15

Thank you so much. I’ve not heard of a checklist. Having given it a quick google, I’m not really finding much. Is this something readily available for me to peruse through do you know?

OP posts:
KcEliMa · 09/06/2019 21:33

Thank you!
Found an assessment too. She’s scored ‘indicates significant autistic traits’ so will be taking that to gp. Thank yous. Need an assessment definitely I think.

Wondering whether to email Senco (again) and highlight to her that I’m seeking an assessment?

OP posts:
Punxsutawney · 10/06/2019 07:21

Ds is 15 and currently being assessed for asd. He was exactly the same had traits of asd in primary and we thought he was on the spectrum but he seemed to cope just about. Year 7 onwards has been awful. He is year 10 at the moment and this has been the worse year so far. I wish we had pursued a diagnosis earlier. Ds has definitely struggled more the older he has got because he is undiagnosed.

So my advice would be if you think she may be on the spectrum to pursue, Ds was referred by his school a year ago and I he finally has his assessment next month. As you probably know with your Ds the waiting lists can be long. There seems to be more help for younger children. I feel completely alone having a teenager on the diagnosis pathway. I would definitely email the senco as they may be able to start to support her in different ways at school.

LightTripper · 10/06/2019 10:42

Hi there.

It might also be worth following FIGS on Facebook (it's a charity for girls on the spectrum and often posts interesting articles/news - also gives a community of parents to talk to).

Your daughter might like "The State of Grace" by Rachel Lucas (who is autistic as is her daughter, so she knows what she's writing about). It's a novel about an autistic teenager.

There are a lot of good books about girls and women on the spectrum too. These two in particular might have extracts that you could usefully share with the school, if they resonate for your daughter.

www.amazon.co.uk/Spectrum-Women-Walking-Beat-Autism-ebook/dp/B07BDQYZZQ?tag=mumsnetforu03-21

www.amazon.co.uk/Girls-Autism-Educational-Personal-Perspectives-ebook/dp/B07NHTDV6T/ref=sr_1_1?s=digital-text&keywords=girls+autism&tag=mumsnetforu03-21&qid=1560159496&sr=1-1

Have a look at the chapter by Helen Ellis in the second one. She talks about her school experiences and transitions. From the way she described it at the book launch, starting secondary school is really peak demands for an autistic girl as you have all the new complexity of changing classrooms for each lesson etc. (huge requirements in terms of executive function as well as sensory stuff), happening at the same time as the social demands in terms of girl cliques ramp up. It's so tough - but please reassure your daughter that it does get better. It's great that she's got you behind her with an understanding of what's going on and pressing for the right support. The fact your DS has a Dx will hopefully help you get taken seriously, as I know otherwise it can be hard to get academic/clever girls assessed accurately (and boys for that matter, as Punxsutawney's experience shows).

KcEliMa · 10/06/2019 19:54

Thank yous.
I’m preparing myself more & more for this to be a long, hard battle. To expect anything less would be daft I think. I’m sure I won’t be able to convince the dr with only one appt to do referral.
Even with ds & a mountain of evidence on the ‘system’ from NN, SALT & HV, the dr still wouldn’t do it & had to be contacted by health team. Ds’ dx took 16months, which again I know is very quick. Doesn’t matter that I d already been through it, this is a totally different & separate situation to me so I’m still so worried & unsure. I just know I got to do it. & probably have got to become a complete pain in the bottom!

Will absolutely look at the videos with dd. Anything that allows her to see she isn’t alone I think will be reassuring to her. She feels very,ugh like it’s her vs the world :(
Thank yous very much

OP posts:
LightTripper · 11/06/2019 10:24

If your DD likes videos there is a nice video interview between Rachel Lucas and her daughter about the book:

There are lots of brilliant autistic women on YouTube she might like too, though I'm sure you'd want to watch the videos first to make sure they seem like a match. Maybe try Purple Ella, Invisible i, Sew Many Books (who has just successfully funded an anthology of writing by autistic women called "Stim" on unbound: unbound.com/books/stim/), .... Speaking of Unbound, and depending on what kind of fiction she likes, she might also like "Underdogs" by Chris Bonello (also autistic - kind of a dystopian novel about a band of neurodiverse teenagers saving the world ... might be a bit old for her depending on what she is into!)

I also like this video by a group called Iris with a bunch of autistic women talking about their experiences. It does highlight the challenges but it's also very positive:

I'm not sure if you will be able to access it but I have a massive list of videos by autistic women on YouTube here:
www.youtube.com/playlist?list=PLmXrV_mgjU_P3ijt8rGH9OlAcYjqyG5Kn

Will definitely need pre-viewing before deciding what if anything to share with DD - but the point is there is a huge amount out there if she is feeling a bit alone!

bathsh3ba · 17/06/2019 13:36

I have an almost 10yo daughter and am about to start the autism assessment journey. I'm terrified about secondary transition. Like your daughter, she is academically able but has cripplingly low self esteem, struggles to make and keep friends, finds organisation hard and often melts down at home.

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