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Autism in girls help

19 replies

GeneralMusings · 17/05/2024 16:58

So I have one daughter who was diagnosed autistic at 9 and is now 15.

My other girl is 12 and in yr 7 and is showing so many signs (sensory issues, dealing with change, friends, meltdowns...)

We've parented in a way that supports her due to learning with eldest child. I strongly think I am also neuro diverse but have had the forms from the GP over a year....

So a teacher raised at school this possibility (also ND and recognised this in DD and suggested we look into it (!)) and this went to the SEN department.

Now they've asked teachers and ebcuase her attendance is okay, there's no behaviour concerns and she's clever they've said they can't proceed.

Any ideas? Thoughts?

Surely this is common in high functioning girls. It's so frustrating.

[Edited by MNHQ]

OP posts:
CadyEastman · 17/05/2024 17:11

This makes me so cross. She behaves in school so there's no assessment? What happens when suddenly she can no longer cope?

I would ask @MNHQ to remove or edit your post though OP as I think you've put your DD's name in your post.

OneRingToRuleThemAll · 17/05/2024 17:16

Can you go private? One of my DDs has and NHS diagnosis and the other private for the same reason.

Justyouwaitandseeagain · 17/05/2024 17:18

Request urgent in person meeting with SENCO and potentially teacher. Outline your concerns and your intention to seek an autism assessment and request their support. Seek support for the referral from your gp and older daughters paediatrician so you are less reliant on input from school. Consider private assessment options or cheaper private / charity screening services which can provide extra evidence to support your request. Capture written evidence from your daughter if possible to explain how she feels or how certain things impact her. Is she able to advocate for herself in school to request reasonable adjustments which will help her? So sorry these things can be so difficult and draining x

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longdistanceclaraclara · 17/05/2024 17:21

Only
Option is to go private here. Or wait 6 years. It's shit.

MsAwesomeDragon · 17/05/2024 17:27

I would/have bypass the school and speak to a GP (we actually saw a mh nurse who was able to refer).
School do not need to be involved to get the referral to be put on the waiting list for assessment. In some schools they apparently have no way to refer (according to dd's school). When it actually gets to an assessment they will send a form to the school for a teacher who knows her well to complete (which is a pita for the teacher because it adds a significant workload when you have a few).
Dd1 wasn't diagnosed until she was an adult, after she burned out significantly at uni. Dd2 is now in y9 and school are only just starting to think there's an issue, because her attendance is falling. She's on the waiting list for assessment but I'm not sure how long it will take to get to the top of the list. School aren't putting any accommodations in place until there's a diagnosis though🤔

itsnotyouagain · 17/05/2024 17:28

I would go back to the teacher that raised it in the first place and ask them to give the evidence they have witnessed, speak to the SEN Dept or to fill out the forms themselves. They must have seen something that others haven't incl the SEN Dept for them to have said something.

CadyEastman · 17/05/2024 17:31

I would/have bypass the school and speak to a GP

We eventually got a referral through the GP too. School could kit have cared less.

Mountainleon · 17/05/2024 17:32

I did a spreadsheet of issues which i sent to gp.
Currently on waitlist.

GeneralMusings · 17/05/2024 17:34

Thankyou all for your replies.

@CadyEastman THANKYOU I hadn't realised I had put her name so huge thankyou.

And yes I am SO frustrated. I even pointed out that the older sister has some quite serious MH problems now due to autism but "behaves" in school and is succeeding.

It was such a frustrating converstation although perhaps her hands are tied but what she is allowed to refer on and obviously their time and energy are taken up with those presenting with more of a "problem" in school.

I did mention that it was one of their teachers that recognised this and raised it with us at parents evening (we've long had our suspicions...) and got back that as only 1 teacher sees it this isn't enough for referral ...etc etc. I was told about self management and did I know many "high functioning" autistic girls present really well in school (and therefore didn't need SEN support). To this I felt like banging my head on the brick wall - as yes that was exactly the issue - she presents well in school so how do we pursue diagnosis?

@OneRingToRuleThemAll I'm wondering now. I did ask about prices last summer and its just so expensive. I'm also not sure whether it is autism or adhd or both. Curious you say you were in a similar position? What happend in your case?

@Justyouwaitandseeagain Literally just had the feedback conversation with the pastoral head who was feeding back from their investigation in school in order to tell me their feedback. Was very explicitly saying I wanted an autism assessment and we went round in circles. I dont think they can refer and in our area the GPs refer back to the school to refer .

The school said they cant diagnose (!) and I said yes, that's why I want a referral. Arggggg.

Yes I think capturing her thoughts will be helpful if we do go private.

@longdistanceclaraclara :( This is all so wrong. Why are our girls being let down like this. Its well known they are often maskers (I know there are boys who are and some girls have behavioural issues etc... but its a common issue and underdiagnosis of girls

@MsAwesomeDragon I am pretty sure the procedure locally is to refer via school as it is supposed to be seen in the school setting. I've heard GPs just refer back to the school. I didn't realise this was everywhere. Theres only 1 teacher who would say she sees signs which is part of the problem. BUt hteyre not trained to truly SEE the issues.

At parents evening anotehr teacher told us she was bright/sparkly/ thinks outside the box/inventive ideas but sometimes struggles with groupwork and negotiating friendshiips. Yup.....

Really sorry about your DD. It's all not right.

@itsnotyouagain - yup they have acknowledged her evidence but said as its only in one subject and not across the board they can deal with it within the subject . And if that's enough to deal with it in the subject then theres not enough need for further support.

They were saying she has to have evidence of further support needs to refer.

OP posts:
CountryShepherd · 17/05/2024 17:35

My DD just been diagnosed at 16, after a 2 year wait. Very high achieving, 100% attendance and a model pupil. Went through GP but school very supportive.

GeneralMusings · 17/05/2024 17:35

@Mountainleon I've been keeping a list on my phone for a while!

I am exhausted.

I had been looking into my own diagnosis too but the waitlist for that is also huge. I am so fed up with the system.

OP posts:
GeneralMusings · 17/05/2024 17:36

School did tell me the name of a private place when I made noises about that being the only option and did say they would cooperatate with any recommendations.

But sigh.

OP posts:
MsAwesomeDragon · 17/05/2024 17:41

There are some areas of the country where they have closed the waiting list for NHS autism assessments, because they're too long. So I'm sorry if you're in one of those areas, you'll be out of luck sadly.
It's got to be worth asking the GP though, and mentioning that the school aren't seeing the issue because she's masking so well at school (and because the teachers only see them 1,2,3, maybe 4 times a week rather than all day every day at primary)

Hemax1 · 17/05/2024 17:41

I’m so sorry the school wont help. Unfortunately we had the same issue with dd school at age 12 and because there were some external family issues going on they blamed those. Fast forward to lockdowns and it was obvious some things were getting worse with it, and by the time she was fully back in school it was A level time. If that time she forgot how to mask during school.

As a family she had been parented as if she was autistic and strategies put in place, but she struggled massively with school. She took herself off to pastoral staff and had a chat where they referred her for a chat with the SENCO. She immediately got referred … however as she turned 18 without having been seen she was taken off the CAHMS waiting lists… and we found out we had to then refer her through the dr to adult mental health services. As she then didn’t get seen before university, she had to go through referral again when she moved…. So 3 years down the line we aren’t really any further forward.

What I would say for our experience is to push hard with the school … the SENCO told my daughter that she was far too good at masking in school time prior to covid. The masking in school is known about for girls with autism. All I can say as exhausting as it is, is to keep advocating for her. Somewhere along the line you will find the right person who will help.

good luck

itsnotyouagain · 17/05/2024 17:43

If only schools refer, what about those being home schooled? Or prior to school age? How do those parents refer? I suspect that the system for referral is so overwhelmed that the LA are putting barriers in place.

Have you looked into if you can self-refer? I did this for my DD as my LA allowed this. Didn't need any school evidence at all.

GeneralMusings · 17/05/2024 17:54

No idea about homeschooling!

There's a form the school have to fill in with whether they are meeting targets and what the issues are and a huge questionnaire (I remember they give the parents one too.)

I think we might have to go private but we are currently overdrawn... 😬. I was thinking about paying for my own assessment for work related reasons until this came up.

OP posts:
annieannietomjoe · 17/05/2024 18:01

Don't ever trust the school - autistic girls are only beginning to be understood and with your experience you will know a whole lot more then them (in most cases) but yes you will prob be rejected due to 2 many service users, not enough resources.

GeneralMusings · 17/05/2024 18:06

Annie rather frustratingly they have been amazing with my eldest. But she was diagnosed before she came up to secondary.

She kept trying to tell me things about autism in girls but then also not hearing about masking.

Its a crazy system.

OP posts:
redcocoa · 15/06/2024 10:28

Last year we got no support for an assessment from the school - our daughter was 14 then. They have now just put in their own request for assessment after her attendance dropped dramatically and she started to have meltdowns at school as well as home. It's frustrating because we are now a year behind where we would have been if they had listened to us and believed what we were saying. She was great at masking but it's all too much now. Be persistent!

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