to ask what your teenage daughters with ASD are like?

[WonderingANDwoeful]

The wheels have well and truly fallen off for my just turned 13 year old daughter since transitioning to secondary school.
I’m meeting the SENCO tomorrow and will discuss a referral then but please can you tell me a little about your ASD daughters so I can see if there are any similarities.
She is an only child so I have no comparisons, thanks

Thank you @ProfessorPeppy, that's reassuring.

@BillStickersIsInnocent

You just described one of mine! If you can get the screening done privately do it.

Ideally you need this sorted before GCSEs and the stress of school increases.

It's so hard so be kind to yourself too.

Thank you @tothelefttotheleft, that’s exactly my concern, that things will unravel as the pressure mounts up. I will pursue the assessment.

DD’s NHS referral was done through clinical partners. Referred Feb 2022, assessment for her and me in July 2023 and then her case went missing and there were problems with one of their doctors not following procedures so all had to be looked at again and then in a multi disciplinary meetings and then she was finally diagnosed in November 2022 so 21 months from start to finish after being told approx 20 months process which turned out correct.

Friendships dried up as she found it all too complicated and confusing and found it very frustrating to not understand well, reluctance to wash, struggling with tidying the room and also having help to do it. Very argumentative and lots of impulsive actions. Debate around gender and sexuality. Very difficult transitioning to periods and finds it (still) difficult to be out of the house with the discomfort experienced. School refusal, lots of exhaustion during a week due to the 'effort' that school requires. Very controlling around food, restricted eating. On the flipside now, at 16, more.willingness to consider coping strategies and how to manage adaptations to an NT world. Struggles to recognise other sides of an opinion or decision.

@tothelefttotheleft thank you for your message. Hospital school was mentioned when I had a meeting with school in December. Removing her from school really is a last resort but since we’ve spoken about it and decided to do it my dd has been visibly brighter and is excited to order workbooks and more stationery ( she’s obsessed with stationery! ) and I’m looking into online programmes.

her school are very against home education and changed their attitude when I said I was feeling like I had no choice but it’s too little too late. Our borough has 7 secondary schools and none or them are great but my ds went to the same school, loved it, did really well etc and dd chose this school and I was happy to support her. I’ve said would like her back in school for year 9 if possible but certainly for GCSE’s and it will have to be a school in our neighbouring borough as they’re better and many more of them. School will be surprised. I’m going to call them Tuesday when they’re back. I feel like dd has been let down badly. She has never even met the SENCO!

Sorry should say she was diagnosed in November 2023 not 2022.

My daughter is 13 and was diagnosed with ASD this week. So much of what has been said above is familiar - it was secondary school where everything fell apart. In hindsite the clues were there but you gradually put the pieces together and then when you eventually get to full assessment the actual diagnosis is something you already know in your heart and fully expect albeit it still feels very emotional.

My daughter suffers anxiety in general but particularly social. She won't speak to teachers (or anyone she doesn't know well), is scared of getting into trouble / being shouted at. Likes routine and everything being the same / as expected, hates surprises. She is a slow eater, will speak really fast when enthusiastic about something but likewise will speak very slow when unsure / worried. V poor sleeper, won't participate in sleepovers. Doesn't like socialising with her friends at weekends /holidays preferring to stay home. She is noise sensitive and won't wear certain clothes (jeans is a no as is anything textured), she is a good eater but won't eat certain foods based on texture - eggs being one. She assumes everyone is looking at her / doesn't like her and generally goes through life expecting the worst case scenario to happen. Can be very slow doing things and doesn't like being touched by anyone other than us her close family. She can't understand why anyone her age would want a relationship as too young (I agree with her on this). Really fixates on her interests. Loves lego, really practical and academically bright, good with technology and also a phenomenal cook!

Sadly she too gets made fun of at school, avoids the cool kids and has struggled to make friends although does have a handful of good friends.

Mine also started to unravel at 13. OCD, anxiety, panic attacks, self harm. On a positive note, she’s quirky, always has a quirky best friend, is very empathetic (regulating it is the issue), loves animals, protective special interests, doing well
at uni, food is ok though she is veggie and has always preferred warm foods and I allowed her to cook for herself from 15/16, never worn makeup.

This one is DD1 (she's 11 and has just started secondary and we'd buttoned down for a rough ride) - does not suffer fools gladly, no filter between brain and gob... she misreads social situations and can be so incredibly full-on to hide her anxieties and try to fit in that she irritates peers in her over-enthusiasm.

She's doing really well at secondary though - deliberately picked the slightly less-academic and smaller school with the focus on support rather than results at all costs, and she seems to have found a decent little tribe of friends at the moment - expecting the wheels to fall off a bit as teenage hormones and friendships wax and wane though. Year 5 was another particularly rough one for us so it's not going to be unprecedented.

My daughter is 12, so not quite a teen. Diagnosed at 10. She is wonderful and infuriating. Super independent. Can get a train or a bus anywhere. Very very fussy with food, also clothes. Can't wear tights, leggings or anything with velvet. Takes her shoes off everywhere. She is very influenced by things she sees online I think. She loves skin care and so I have no problem with hygiene at all. Tells everyone what they want to hear, whether or not it is the truth so you can't trust her as far as you can throw her. She's also waiting an ADHD assessment, so she is extraordinarily scatty and I have to tell her every instruction ten billion times. But she is so charming and funny that it's hard to get annoyed with her.

Mostly she does amazing, but then she will have an utter crisis (before her exams last year, she decided she couldn't walk for two weeks). They seem to come out of nowhere. She has loads of friends because she is funny and charming and pretty..... But she sometimes gets things so wrong it's jaw dropping. School try to do social stories with her, but she knows exactly what they are talking about and gets defensive. When she decides she wants something, it is all encompassing and all she talks about and she plots non stop how she can get it (currently ice skating lessons, even our nearest rink is 50 miles away)

To be honest, at the moment (well aware everything might go to hell in a hand basket), she is a funny, quirky little delight who keeps my life very interesting. I absolutely adore the very bones of her.

Age 13 was awful.

At 16, she is happier than ever. She still struggles with choices, with emotional regulation and understanding, with rumination, with sensory issues, but she's gone from this time last year getting dysregulated to the point of tears and having no idea how to why at minimum a few times a week, often multiple times a day, to maybe getting that upset once a month, usually at the end of a long week or when she's not feeling well.

A large part of it is she's an apprentice at a supportive workplace where she doesn't have to be constantly 'on' like she was when she was at secondary school. Oddly, she is an apprentice at an all-through school, which I worried was not going to be a good fit after her school years, but it's worked well. Also, she can wear clothes and shoes she finds comfortable all the time now.

Another large part is she knows herself better now and over the last few months has the confidence to just say she doesn't like something without getting worried what it looks like.

All really helpful
I feel armed to speak to the SENCO today and push for a referral as she’s always been quite introverted and had a dislike for speaking to people she didn’t know including teachers but this has got a lot worse since secondary school and she’s dropped out of all ASC activities due to it being too awkward to talk to the leader / other children who are there

As the saying goes 'you've met one autistic person, you've met one autistic person".

So, there is no 'this is what we do'.

DD was permanently excluded from school at the age of six, that was pretty tough as a parent.

We've done state, independent, and lots of therapy.

She's now very happy at agricultural college at 15 and is learning coding in her spare time.

She is calm and happy. But it wasn't an easy ride.

Good luck op! I’m sure you will find this out soon enough but you have to seemingly fight for everything asd related and your dd is very lucky to have you as her advocate.
just one last thing from me- my dd said that her diagnosis has been life changing for her as she has dropped masking and has totally embraced who she is and as a result of this she seems much happier in general.

her school is back tomorrow, I need to formulate my plan of action to formally withdraw her from the school. The final straw was receiving a letter from the LA threatening fine/prison etc. I told school that prison would be a nice break for me, not helpful but I couldn’t help myself bearing in mind she’s been off since middle of October and letter came at end of December. I wish they had helped us more rather than sending us a stupid bloody letter.

Zoflorabore, this is my worry as my daughter has started to refuse certain days.
PE / Drama / DT - what do you do when they can’t go?
Meeting with SENCO was a waste of time - CAHMS aren’t taking new referrals so will have to find the money to go private

@WonderingANDwoeful im sorry if I missed it but has your dd been diagnosed with anything yet?

ive done do much research into the law and school issues etc and what you can do is ask for your dd to not have to take part in those lessons- that’s what I did and they agreed it to, they have a place in school specifically for asd/anxious children to go who can’t cope with certain lessons. It’s either something like that or you will find dd just refusing to attend on those days which is what sounds like is happening. Schools can absolutely be flexible but some choose not to be. I was very upset that dd’s school refused point blank to send any work home as that’s their policy but luckily my dd is a top set child who will catch up hopefully. What if she wasn’t ? The more I look into the issues surrounding our children ( and more and more girls ) then it’s clear we need more schools that are not mainstream but aren’t classed as “special school” either and I hate that phrase but it’s one that seems accepted where I live. There’s nothing in between.

i know someone professionally who used to be an educational welfare officer for a different council who said schools are generally petrified when a parent says they are going to home educate or remove their child in general as the council then become involved and more often than not it
highlights the schools failures. We’ve given them enough chances now so we’re at this stage and it’s absolutely the right decision for my dd.

Ps they are the exact same 3 subjects that my dd refused too.

I've found my people! DD14 diagnosed with ASD just before Christmas. EBSA all last term. Restricted diet etc. She's quiet, well behaved and academically v bright. Just can't do school and it all unravelled around age 12.😫

My ASD dd is 20 now, she battled through at school until Covid lockdowns made her realise she didn't 'have' to go in and there was no way she'd go through the gates again after that. Got good/fine GCSEs but bombed A-levels through non-attendance and not doing the work. I feel that even now, at 20, she's still working through the trauma of her school experience and if I could have my time again I'd withdraw her and home-school after primary school. Obviously not always an option though.

Following until I get time to comment later xx

Very poor mental health- anxiety and depression
Anorexia and very restrictive eating
High achiever but never thinks it is good enough (can win a competition or get 100% in a test but will find something she did 'wrong' to agonise over)
Very low self esteem
Well.behaved ar school but nightmare at home- constant meltdowns
Noise sensitive
Repetitive in questions
Can't cope with changing plans
Can't cope with holidays
Has suppressed her personality at school and is very quiet and unconfrontational in order to keep friends
Terrified of rejection
Everything has to be perfect (was very prescriptive over how exactly Christmas day should run etc)

This is just so lovely I cried. It’s how I feel about my dd who I feel may have Asd/adhd