Can you tell me about your GIRLS with autism please?

[Whatevermission]

And also, what is the benefit of a diagnosis

DD is 8 and I am wondering;

Still tantrums like a 2 year old
Cannot compromise, has to be her way or see above
Has few friends
Very bossy/controlling
Lots of sensory issues earlier in life though; mostly ok
Likes tidy ordered room
Doesn't sit still/always banging stuff/fidgeting/clumsy
Doesn't listen/asks questions but doesn't wait for answer
Very academic
Very

My dd is 23. Diagnosed about 18 months ago (she'll tell me exactly how many days/hours/minutes/seconds I'm wrong here )

I recognise lots of these things. Tidy room though? I wish!

She has her difficulties and issues but she's great! As pp said, wouldn't change her for the world. Wish she felt the same way about herself though.

The clinic we chose was from the NAS website. Being in Scotland hugely limited options for private diagnosis but I really thought we had done our research well.

CAMHS diagnosed DD without them doing an ADOS, because she had already done it at the private clinic they couldn't use it. They did tell me the diagnostic criteria they use changed last year and social and communication are now as one rather than 2 separate criteria. They seem to think this will benefit girls more because they often 'fell' at the communication hurdle.

OP I think this was mentioned previously but we have a book called I am an Aspie Girl by Danuta Bulhak-Paterson.
https://books.google.co.uk/books/about/IAmmanAspieeGirl.html?id=uJOIBwAAQBAJ&printsec=frontcover&source=kpreaddbutton&rediresc=y

It's very good at explaining to younger girls probably (5-10 years) about their condition. It has my daughter almost down to a T!

@PerfectPeony2, I know exactly where you're coming from.

I knew my DD1 was different and something wasn't normal/right. The nearest we got to an acknowledgment was a HV doing her 18 month check, going through the tests until she passed the four year old assessment, telling me she was gifted and would need to go to private school.

In the end, she was diagnosed at 12 after falling apart following the transition to high school.

I'm sorry you've been laid into on this thread. Gut feeling is really important. Listen to it and keep an open mind. Early intervention matters so, if you continue to have concerns, act on them. If you're turned away, keep trying as long as you feel she needs you to.

I hope your fears turn out to be unfounded but, if they aren't, it won't be the end of the world. I wouldn't change a thing about either of my autistic DDs.

I'm sorry you've been laid into on this thread.

Nobody has done this to anybody.

DD 20, diagnosed very late (17) after significant mental health breakdown. What you are seeing may be the tip of the iceberg, (think duck swimming serenely but frantically paddling to stay afloat) my DD seemed to be ok and seemed to be coping. Many ASD girls are very good at masking and coping but this can come at a significant cost. My advice ( and this is only from personal experience) is to seek help and a diagnosis, she may be experiencing challenges that you are not seeing which she is unable
to articulate yet. Yes to the Girl With Curly hair as a resource and I highly recommend you read some stuff by Tony Attwood an Australian clinical psychologist who has researched and writes extensively about girls with autism. Good luck with whatever you decide

You were asking about demand avoidance - take a look at this.

My twins are 5 both ASD with suspected PDA profiles ( very hard to get a PDA diagnosis, but demand avoidance should be acknowledged by professionals as normal ASD strategies won't work).

www.pdasociety.org.uk/what-is-PDA/about-pda

Thank you so much for your post @goldmandra Its just something I thought about as we do spend time with a lot of ther babies her age. Either way it doesn’t matter, all I want is for her to be happy.

Thanks derpess

Feel really beaten today. Couldn't get her to go to school AGAIN. What on earth do you DO about school refusal?? This has been going on for 2 years. It is exhausting. I am fed up

I think someone mentioned upthread but it sounds like your daughter would really benefit from having an EHCP. The school refusal / anxiety is probably because her needs are not being met at school. It's really common for school not to see the behaviours as girls especially are really good at 'masking' their behaviour.

I was told repeatedly by the school that my kids wouldn't get them, I applied myself and they both got EHCPs.

IPSEA is a good website with lots of advice about this, they also have template letters you can use to request an EHC assessment from you local authority.

www.ipsea.org.uk/pages/category/education-health-and-care-plans

The more I read this the more I see DD10, although she has been diagnosed with attachment disorder which apparently can mimic autism. I have asked our adoption paediatrician for further tests. DD definitely has sensory issues. She often seems a lot younger than her peers, although academically is streets ahead of many of them. We get meltdowns, although they don’t last as long since DH & I have been getting help from a family therapist. How we behave can make a difference but unfortunately not always. The main thing for us though is the extreme anxiety & desperate need to be in control. So hard to cope with.

IWillWearTheGreenWillow...thank you for posting. A lot of this describes me to a tee (ASD but diagnosed well into adulthood, after education).

A number of things have been levelled at me in terms of lack of resilience both in school and later in life (Things I'll never forget or explain away: "Just have a thicker skin"..."You seem so unindependent and give up so easily") yet in many areas I will go several miles beyond what's proportionate through determination or sense of responsibility, and when it comes to independent?! I'd say I have been since I was about 9. So these comments stick and do real damage.

Also: strangely high pain threshold I think.
Patterns: if you are very skilled at seeing them everywhere or trying to work them out, there will be some environments you can't stand for very long. Prime example is in the London underground where there are long corridors with random mosaics in 2/3 colours of tile. Even walking down these as intended makes me feel sick. I think there is something of this trait in being in large crowds too. However - a number of friends have done very well in terms of academic research and careers if they're good at spotting and unpicking patterns, of all kinds.

If you do go through a diagnosis that ends with some graphs of findings on paper, the top 2 per cent skills are often balanced with a bottom 2/5 per cent part in other measurements (in my case, working memory and something else) so the line drawn between the graph points will be a W or extended W shape. This is both affirming and awful to take in.

Just found this thread and hope you don't mind if I follow it. My much-loved niece, aged 10, is undiagnosed (my DSis is trying to negotiate her way through the process but it is frustrating) and demonstrates many of the same behaviours as OP's daughter. I'm simply trying to learn as much as possible so that I can support DSis and so that I can understand more clearly some of the drivers and triggers around DN's perceptions and behaviour. We have a very close auntie/niece bond and my DSis often asks me to help out when DN is feeling particularly anxious.

www.communitycare.co.uk/2019/05/15/pathological-demand-avoidance-social-workers-need-know/

This is a very up to date article about pda.

I’m mad this afternoon because we have never claimed the domicillary care allowance for dd as we both earn decent salaries. But now I cannot take extended parental leave this summer (I still have 50 days available) BECAUSE I have never claimed it for her disability. It’s shit. I’ve spent soooo much money over the years because the Governemrn couldn’t support dd - the Ed psych assessments, the courses for parenting and supporting dd, getting resources for her, play therapy, traveling to the other ends of the country for courses, taking annual leave for her clinic appointments and the few supports clinic did offer. And various non-clinical supports that we do because we could see they helped.

And now, because I have done it myself, I am being punished and need to use up ALL my annual leave over summer on dd rather than actually keeping some for much needed breaks at other times and maybe, just maybe, wanting an actual day for myself and my own mental health......

AAAAAGGGHHHHJJJHHHHH

sorrry, rant over, ignore me

So should I look for a clinic that uses the DISCO method? I really don't know much about the different ways they make a diagnosis, but I do have a concern that because dd is so good as masking that they won't be able to diagnose her accurately. One clinic offers a part of the assessment process where they go in to the school and observe the child. Well they won't see anything unusual with my dd because she masks all day there and melts down the minute she comes out with us. Her teacher says she can't see any signs, but that's because she masks! She mentioned how kids she has with ADHD were usually boys, and that they really couldn't hold in their impulses or stay focused at all. I didn't bother arguing with her because she isn't a clinical psychologist, she's a primary teacher, but it left me even more aware of the lack of understanding of girls with ADHD.

We've already wasted money once when dd was 5, and we had an assessment for ASD privately because of the waiting times here. They said she came out borderline but that it might be because she was only 5 at the time and it was hard to diagnose young children, and if we still had concerns to come back in a couple of years! We think she's definitely on the spectrum, but it's the ADHD type of behaviours that are really worrying us. She's out of control at home at the moment. Is anger and aggression more of an ADHD behaviour or is it the same with ASD?

This is a really helpful thread. My DD, age 9 has ASD. I can really relate to the masking at school, different story when she gets home though. Huge meltdowns, screaming, violent, destructive in the home. It's very scary to witness.

School couldn't see what the problem was, couldn't get any help. We have changed schools. I sought private diagnosis and then the NHS one followed. New school are ok, better than previous, but she still suffers. I'm now applying for an EHCP and I would be incredibly grateful to anyone if you could help me as I could do with some help in articulating myself on the forms.

My DD is a well behaved, compliant child at school but she struggles to learn as the classroom is too noisy, lots of sensory overload going on. She just switches off. Educationally below expected level. Huge issues in social and communication area. She has anxiety and gets socially confused. What can I put down on the EHCP when it asks about what extra help above what the school can currently offer? School are not really helping me, SENCO quite closed off and vague, is this deliberate I wonder???
What is out there for my ASD girl that we may be able to access if she gets the EHCP? Thank you

Just to add, I recommend reading books by Clinical Psychologist Tony Attwood.

BiddyPop- sorry to hear about your situation. Please claim anything you are entitled too. What's happened to you is really unfair, but you must claim anything you can.

PerfectPeony2 - firstly please don't worry, most of the time things can mimic and look like things to worry about when they are totally normal.

However, having said that, I knew at 4 months old that my son had something different going on. My sister commented on how when excited rather than the typical hand waving smiling and giggling a small baby makes, my son went rigid, with pointed hands and feet. It was obvious enough for me to video it. However I was dismissed by others as don't be stupid you can't see autism that early. As a consequence I dismissed other signs, and was told by a CAMHs psychiatrist when my son was age 9 that it can't be autism as he makes eye contact. I believed them, and it delayed diagnosis by another 3 years. My gut instinct was right all along, and when the diagnosis was made, so many who knew my son pointed out reasons why they "knew"! What I am saying that whilst in all probability you are seeing things that are normal, don't doubt a mothers instinct!

Scanon - my son was told that he made too good eye contact at age 9, it delayed his diagnosis by 3 years. One bit of advice that came too late for me was to request that the paediatrician put in writing the reason that they don't think it is autism.... they will not be able to do this, and this can be your lever for requesting a full formal assessment.

Whatevermission - have you sought help for sensory issues with an occupational therapist? Understanding sensory issues can really help with reducing anxiety.

I remember for me school was really hard mostly due to the school uniform irritating, and not being able to tolerate the noise (fortunately I had temporary hearing loss, glue ear, through most of it and was given hearing aids which I left in my ears switched off!). But I never voiced these at the time, as I did typical masking and trying to copy everyone else. I only got my diagnosis last year, way too late! I was always "different" from my siblings, but never understood why, until I saw myself in one of my children, the one I knew to be autistic!

An update; I emailed deputy head asking how I would get assessment for autism and she said via GP, to get referral to community paediatrician. I have seen the GP this afternoon and preliminary assessment and any referral is done via school nurse. So he is writing to school nurse for us. Which is good. Except, I am concerned school didn't KNOW that it should be done via school nurse

Also...any observations done in school will come back as entirely normal. We will see

My daughter's school did the referal, i had a meeting with senco and pastoral person after completing an autism assesment questionairre with my duaggter.

Id say referal was 7 months from that appointment (coming up in september.) I dint know for definite theyll diagnose her but its a framework thats making a lot of sense of how she is.