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

DD got diagnosed at 13, always a quirky 'little professor' but I put that down to being an only child. She is twice exceptional so academically gifted and autistic and the Ed Psych said her ability probably masked her disability at Primary.

She hates the secondary school environment, however I cannot fault the school or SENDCO who has been fantastic.

Noise cancelling headphones (Amazon, Anker Soundcore) have been a game changer as very sensitive to noise.

Time and patience are essential at home, managing energy levels with time to recharge, factoring this into weekends and holidays.

When I want DD to make a decision I'll give her an option between a couple of things much like I did when getting her dressed as a toddler.

DD has no challenging behaviour, shuts down rather than meltdown.

She hates small talk but will have very in-depth conversations with you. Will completely miss conversational cliff hangers.

Gets very frustrated with herself as she has high aspirations for herself and cannot always meet them. This weekend she had a match of her sport, her chest got tight during warm up (asthma) so she got really angry at herself, we sat in the car for a bit whilst she calmed down and she regulated enough to play the second half. We have worked with her coaches who have said from now on at away matches (where she has the biggest issues as unfamiliar etc) she will just do warm-up and second half and if she has to be subbed on and is happy to be will only play her normal position.

We went private 6 weeks from initial contact to having the report in my hand compared to 4+ years on NHS list, if you even make the cut which DD wouldn't have due to not having challenging behaviour. £2.3k our holiday fund but worth every penny. She also had the WISC V included which was possibly more useful as it showed her areas of strengths and weaknesses and the school have been able to implement strategies with this in mind.

If you are unsure between social anxiety and autism, in order to receive an autism diagnosis there has to have been signs from a young age (5 years ish and below).

Singleandproud, what kind of signs have to be there though as surely they’ll present very differently in a 5 year old with very few demands on them and a 13 year old having to socially manoeuvre secondary school etc

If you are unsure between social anxiety and autism, in order to receive an autism diagnosis there has to have been signs from a young age (5 years ish and below).

The difference between autism and social anxiety is absolutely not to do with seeing traits in under 5s. The criteria for autism diagnosis cover a lot more than social anxiety.

This thread has helped me no end. I am thinking about starting one for adhd although I expect it won’t be massively different but this thread has helped me go from a bit unsure to almost certain
words I hear a lot are the wheels come off at 12/13 and that is certainly my experience. The more I look back the more I realise my dd has masked a lot, particularly in primary school

I’ve been diagnosed myself with ADHD only last year aged 45 and am also on the ASD pathway as it seems I have both and I strongly believe that both of my dc who have autism also have ADHD, they are so similar in many ways it’s often hard to tell which is which.

regarding autism and diagnosis- when doing my dd’s assessment ( she had one specifically to her and I had one about her ) there was a huge focus on what she was like at age 4 which is hard to remember at nearly 13 and I asked why they were so seemingly fixated on that age and was told that a lot of the signs are there at 4/5 and I also believe it’s relevant because they haven’t yet started school or are just about to and therefore haven’t picked up on social norms etc. it’s a bloody minefield that’s for sure!

today is the day I contact school to tell them that dd will not be returning. All feels very real now and I’m dreading it but the SENCO department have very much let her down, haven’t been in touch once in 12 weeks, haven’t acknowledged the 13 page diagnosis letter I emailed over to them as soon as I got it and then asked me at a meeting “is she diagnosed with anything?” I actually give up.

We had a private assessments for our daughter when she was 9. It involved a parental telephone interview under the international standard (I’ve attached a screenshot of the name), an in person meeting with a speech and language therapist and a questionnaire which school provided.

A lot of the parent interview questions were cantered on things she did or didn’t do at aged 4. Many of the questions seemed to me to be centred around ‘typical boy’ presentations of autism which did not fit my daughter, which felt a bit demoralising in some ways but I had to remind myself that we already knew that, which is why it took until an anxiety meltdown in year four to seek a diagnosis. I knew my daughter had always been ‘quirky’ but it didn’t interfere in her life until year 4. She wasn’t an anxious child prior to then.

The speech and language therapist and doctor met with my daughter alone for the in person test. Some of the things they picked up on were very subtle but spot on. I can see why a lot of the wheels fall off for autistic girls in secondary school. My daughter will be moving to year 7 this September which is a bit scary (she’s already anxious about it) but I’m grateful we managed an early diagnosis.

fir anyone in South London looking to go private, I would highly recommend Dr Clements and his team at LEAD.

Not in school. Self harms. Doesn't go out. Restricted diet. Things are a total mess tbh.

CAMHS don't care. Still waiting for autism diagnosis, although I have a bad feeling it will be too late by then and she won't get an education.

We got a diagnosis last year. Main issues really were school refusal and severe mental health issues. Started with OCD, then progressed to self harm. Very common indicators in girls by all accounts.

She struggles with friendships and social situations, gets bullied quite significantly ( easy target) and is also very behind academically. She gets help in lesson to be calm as her initial response is to panic.

She is super organised and gets up early so no rushing, has a very strict morning routine to the minute.

edited to add: she has inattentive adhd and high functioning autism

Joining, we were lucky both of our girls diagnosed relatively early after massive struggles Fromm the get go with nursery, primary, wraparound etc and hit crises far before teen years and think massively helped to make adjustments early, so far, touch wood, my 13 yo is doing ok.

Lots of PDA signs I’m now also seeing this end

Things started to really unravel last Feb when my daughter turned 15. She had always struggled a bit since secondary school but a hiccup with her friendship group (that's me trying to sanitize it, was horrendous) left her isolated and depressed. She teetered on the edge of school refusal and then finally in June stopped going to classes. We limped along trying to get her into school for short periods of time, not in lessons but on the grounds. Then autistic burnout followed where I could barely get her out of bed. Long story short she is now doing online lessons and although she doesn't like school she is doing 4 GCSE subjects (she already has one as at that school they do one early). Her sleep pattern was terrible but eventually we got an appointment with a community paediatrician and she is now on melatonin which kind of helps. We paid for a private ASD assessment in July and had her diagnosis confirmed. EHCP is currently being negotiated. It all feels a bit too slow and late for her. I have days where I panic about her GCSEs and then I have a word with myself as I know she will get to where she needs to be when she needs to be there.
If I think about the path we have travelled in the past year so much has changed, it got worse but I think (I hope) we've turned a corner.

When she's overwhelmed we often get a "I don't know" for any questions, so I try then to take the reigns to relieve any pressure.
Her diet is limited, but any time she has a hankering for something different I kind of go for it (last night she fancies some tuna mayonnaise about 10pm, I didn't hesitate), she's expressing an interest in something other than baked beans and chicken nuggets!
She isn't good at identifying when she needs to shower, I try and nudge her in the right direction, it doesn't always work.
I sometimes look at her and wonder how we didn't see before, it's blindingly obvious now.

She currently still really struggles with any social interaction, even with family or people she's known for years, I am hopeful this will get better at some point.

@HVLew solidarity😥i have so many similar issues with my dd and wondered if I can pick your brain re: online learning. We are literally only at the beginning of the journey and school notified but no contact from them today apart from sending someone from the attendance team to check she’s still alive ( ok I’m being sarcastic but they’re starting to annoy me now ) and I could do with one pointers.

my dd also has melatonin which works and we currently have an obsession with Ramen noodles but only 2 very specific ones which have been ordered in bulk from Amazon.

this thread has made me feel much less alone.

quick question for anyone whose dd has been ESBA- have your schools been willing to send work home?

DD’s collection of Ramen 😳

Mine fell apart through the whole of primary school. Diagnosed ASD at 8. We think it’s PDA but that’s not diagnosed here.

Can be charming, funny, articulate, thoughtful, will fight against any injustice. Can mask well when demands aren’t too great.

Has a lot of support in mainstream secondary. Just hanging on now in year 11 but is vomiting regularly and falling asleep after school. Attendance is down, not refusing but too exhausted and unwell. Is incredibly worried about exams. She gets 5/6 in mocks when she sits the whole exam but will often walk out.

@Zoflorabore

When I was teaching our head of department would get loads of worksheets prepared forthe absent student and the list of topics that the class would be covering and email / get them sent to the student, following COVID all of the school's remote learning resources also remained on the school website. It wasn't ideal but I taught a practical subject so was the best we could do.

Schools can't afford to be sending text books home. However you can purchase them online, you could ask each head of department which text books they use so that you can purchase them yourself, it'll be expensive but that way you'll be covered.

To access online learning was a slog (isn't everything?). As school refusal started I asked repeatedly for work to be set for her with limited response. Having asked the year head 3 times I then used the app they use to set homework and messaged each teachers individually and stuff gradually started to trickle through. She had mock exams and we did them in our own time at home. We applied for Flexible learning, you have to have someone other than your GP complete it on medical grounds and someone from CAMHS did it the first time. She was turned down the first time as they said as she is bright (& eh really is) and flex learning only offer the core subjects it wasn't right for her. They offered her this thing called AV1, it's a robot thing that they dial into the class like a webcam. I imagine that's great if you're at primary school and broken your leg but if you have high anxiety about school and it has to be physically moved from class to class... Well you can imagine how successful that was! It lasted a week and a bit. They forgot to charge it, move it, turn it on. School promised noone would know it was her. Then a teacher spoke to her directly through it and she freaked out. She completely shut down. We then applied for Flex learning again, this time the community paediatrician completed the form. It took a while to get the decision but once we got the Yes then it's moved fairly quickly. We have built the number of subjects up slowly, working with her learning support mentor. We tried and face to face class it was a disaster but we have got her to go to an art group once a week. It's baby steps but we are moving forward.

Struggling here. My dd is 15 and until a few months ago I'd have said doing really well with all adjustments in place, schools good, actually has friend.

But then unravelled self harm, and a suicide attempt and she's really not happy underneath it all as its all just too much she says. 😔.

How did people end up with medication? I'd now consider this but not sure the Dr can prescribe to under 16s? She hasn't even seen our Dr as its changed.

Also we're waiting for camhs (have had assessment but heard nothing since) and not sure what they can offer. She too struggles with emotional regulation or understanding emotions as well as just feeling exhausted.

If yours is tired is staying in bed watching TV all evening actually okay? Or counter productive??

The younger one is 12 and I'm sure autistic but school can't refer unless an issue at school. I'd love to go private but we really do have a low income.

I'd like to go for assessment but again no money- I know too socially an nhs autism assessor who mentioned she declined someone's assesment as they could show empathy 🙄🙄🙄

“ Zoflorabore “
Have food issues been a big issue for a long time? this has started here in a big way and we are currently only eating pizza for dinner every single evening. Anything else is completely refused.

That was one of the first big things - my kids were so much more exhausted by life, and then one of them just can’t drop off even when exhausted (and the other one can easily sleep 12 hours).

also a problem with constant noodle eating!

@WonderingANDwoeful regarding food- she was ok as a toddler but as time has gone on she has and a very restrictive diet. School lunches were a no no apart from the odd day, she went on 3 residentials in primary and really struggled with food, same with sleepovers.

i would say the past 18 months have been horrendous and she will hyperfixate on certain items for weeks/months at a time. There are around 4/5 items on the go during these stages. It makes eating out very hard work and she’s obsessive over her food to the point where she will plan tomorrow’s meals today. She is overweight and i obviously don’t want to give her a complex but it needs addressing in a gentle way. A lot of her obsessions have been fast food types and I was just desperate to get her to eat and only looking back now I can see how bad that was. She’s loving cotton candy grapes from M and S at the minute which makes me feel slightly better.
She is vegetarian also used to eat chicken nuggets from McDonald’s only. Meal times are fun in my house when I’m making 3 teas every night!
her autistic brother is fussy to a point but will eat pretty much anything except fish.

Fairly restrictive here too...

Vegetarian won't eat anything proteiny and is nauseas in the morning which I don't think poor diet is helping. All she's eating today is potato bites... often won't eat

Other one is just so fussy. Can't have food touching. Would live off chicken nuggets every day. Is quite overweight.

I feel out of my depth completely with it all. It was so much easier when they were small it seems.

“Zoflorabore” If it makes you feel any better, my DD has largely lived off of plain carbohydrates including a lot of fast food for the last few years.
She is naturally skinny so it’s the other end for me - I desperately want her to eat more so then can feed into unhelpful habits by agreeing to buy the junk just so I know some calories are getting into her.
She also only ate McDonald’s nuggets until suddenly she became vegetarian and now won’t eat from any restaurants that serve meat alongside food so rules out most places as she won’t touch meat substitutes either as “ they literally look the same “
Its a vicious cycle really

“ThreeBeanChilli”
How old is your DD?
Interesting re the vegetarian bit mentioned again too as this started here last year and her diet has just became more and more restricted from then on.
You’re completely right - it was all so so much easier when younger

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