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

15 year old now but shes always been very Quiet, very into achieving high grades, only 1 real friend. playing with gender identity. Difficulty around eating with a limited diet and incredibly slow eating anything. Gets picked on at school for being different. No interest in whatever the "in things" other pupils follow so a bit of a lone wolf.
I think she will find others like her at Uni, of which she's dedicated to getting to but school days aren't great for her.

DD16 is surprisingly sociable, very loyal to her friends, quite rude & grumpy to her family, literal (B/W thinking), not very independent (has never taken public transport alone, will only walk alone to familiar places), loves TV, happy to be left in the house alone, struggles massively academically (LDs) but very compliant within school, no interest in fashion and makeup, resilient. Secondary school has been her undoing too 😔 can't wait for it to be over.

Oh yes, agree with @pponk very limited diet which has become increasingly worse as she has aged. Very slow eating normal food (fruit/veg!).

Socially extremely difficult. She found it very very hard to find her people and didn’t understand social nuances at all. Year 11 was far and away the worst year and followed lockdown. Moved schools for 6th form and has thrived. However she had a total meltdown about a year ago and quite bad depression. Anti depressants have been life changing and she’s thriving. She loves fashion having had no interest previously, good group of friends, prefect. She’s still single minded and can’t often see other people’s points of view.

she also has ADHD and it’s clear she can only do one thing. She’s terribly messy and clearly overwhelmed when there are too many things to do so I don’t put pressure on her and often do most of her tidying and then talk her through the rest or she just melts down at the task.

years 7-10 she still appeared very rude, couldn’t look at people, had no idea how to instinctively ask questions and make small talk or make eye contact. It is now much better but was learnt rather than instinctive

My DD has ASD and is also an only. Secondary school was her unravelling too, although the signs were there from about year 5 as she struggled to maintain friendships and wasn't into what the others were into. Started school refusing age 12/13 and becoming very anxious being out and about. COVID happened a few months later and lockdown basically saved her, she thrived learning at home. High achiever, very poor sleeper. Loves Lego and insects. Very happy in her own company. No problems with food, but cooking is a special interest.

In retrospect there were loads of signs, but I am a single parent and may have ASD tendencies myself, so it took me a long time to realise anything was going on.

And yes, agree with @2024andsobegins , antidepressants and college have been life changing for DD. Also this is exactly what it was like 'years 7-10 she still appeared very rude, couldn’t look at people, had no idea how to instinctively ask questions and make small talk or make eye contact. It is now much better but was learnt rather than instinctive'.

Hi OP, I’m a teacher (plus my MSc dissertation was on autistic girls) and I know LOTS of ASD girls (diagnosed and undiagnosed). Below is a far-from exhaustive list:

Aged 13 is the ‘everything falls apart’ age - the mask slips
EBSNA (school refusal)
Difficulty establishing/maintaining friendships
’Everyone is looking at me!’
Sensory sensitivities (esp hearing)
Anorexia and gender dysphoria, linked to black and white thinking and intolerance of uncertainty
Demand avoidance (not eating, not going to the toilet, doing everything slowly)
Random phobias that seem odd to NT people (stairs etc)
Extreme anxiety
Difficulty with transitions
Inability to cope with change
Wandering around school instead of attending lessons

I hope this list is helpful. I too suspect I am ND, so none of these things are coming from a place of criticism or ‘deficit’, they’re just things that autistic girls have in common.

Is not being able to make any sort of decisions a trait?
I will ask my daughter what she wants to do on the weekend, what she wants to eat, what she’s thinking about and all are met with “ I don’t know “
Lots of food sensory issues - bland carbohydrates
Only a couple of close friends but did manage her year 6 trip well although didn’t eat much
Won’t go anywhere at all on her own, only with me ( single parent, dad not around )
Doesn’t maintain eye contact for very long before looking uncomfortable

She is academically bright, always has been and a fast talker, walker etc

She can’t initiate conversations so tends to repeat the same thing over and over again and dislikes noise to an extreme amount such as people breathing!

@WonderingANDwoeful Everything you listed is linked to ASD presentation in girls.

Thanks professor preppy,
A lot of those things listed ring true
She can’t understand why people are getting into relationships and says she will consider dating at 18 when it’s an appropriate age ( I think this comes from not being sure enough of which gender she may be attracted to or perhaps has no attracted to either gender )

She hates drama, can’t wait participate at all really in fear everyone is looking at her etc

Its a fine line between ASD and social anxiety so trying to pull them apart really before insisting on a referral tomorrow

My DD started secondary this year and has just had a diagnosis. She's very high functioning, bright and compliant at school. She has however always struggled with anxiety and some school refusal and melt downs at home after school. We only started to consider ND towards the end of primary but it is so bloody obvious now we know that that's what she's been struggling with all along. She's been masking so well but essentially suffered from what we now know to be autistic burnout in Y6.

She has the female internal presentation ASD. Mainly manifests as anxiety/OCD. She struggled when she started secondary with 'reading' all the new teachers. Struggles with group interactions. No real deep friendships, it's about who she can rub along best with on a particular day. Absolutely paranoid she's going to be told off at school. Lots of school anxiety and some refusal in the mornings still. But doing amazingly academically and glowing reports from her teachers.

Oh and she's very into Lego, words and numbers, animals etc.

Suffers awful separation anxiety especially from me.

Overwhelm when too many things to think about.

Very literal.

Exceptionally shy.

Hates change.
Developed a facial tic that was likely stress related.
Doesn't speak much and one word answers.
Appears rude.
Talks in a strange accent when talking to other people ( not at home).
Stays at home rather than doing things socially.
Seems like a much younger teen, rather than someone in their late teens.

However, very academic and works hard at their studies.

We’ve had a real time of it.

Missed all Y10 & Y11. Did manage to go in for GCSE, and got 5. Missed the first year of college, but has gone this year, and we got a full term in.

Wheels fell off in Y9, which coincided with lockdown .. could not do online learning, we didn’t know she had ASD, she got terrible anxiety, completely withdrew, really dark times.

She is now diagnosed, we have a great Consultant at CAMHS, she is on Setraline (which has made a massive difference).

Food Wise .. she picks things she likes, I get in in, and she sorts herself out. At the moment it’s Tomato & Basil Sauce, and wholemeal pasta, in the past it’s been Noodles or Rice etc.

My Dd has ASD and ADHD

Esba 50 percent school attendance.
Limited diet very thin now becoming a sets concern
Hates smells. Will frwak out at the smell of garlic
Sensory issues refuses to wear jeans etc
Sociable and has friends but can be intense and have lots if falling outs. Then they make up again. Tends to obsessively focus on one friend.
Is failing GCSEs because of attendance and burn out.
Intrusive thoughts
Tired easily
Looks around the room in lesson appears to not be listening
Can turn on a knife edge.

Self harm
Severe mental health issues

My 15 year old can get very distressed if given lots of options, especially if she's anxious and particularly around food. I'm (slowly) learning to offer limited choices or to say something like "I'm having beans on toast, what about that?". She's not PDA but I think questions can still feel like demands sometimes. The Autistic Girls Network (website and FB group) can be a useful resource.

Personal hygiene was terrible
Sleep issues
Petrified of getting things wrong/school behaviour management policy
Very clingy to me
Very restrictive eating -would eat the same thing day after day but generally after a several hour debate about what she was going to eat
Friendships were very confusing and therefore very transient
Changed her look a lot and very dramatically
Very high anxiety

High school ended when Covid closed it thankfully

University is proving to be much more positive

autisticgirlsnetwork.org/keeping-it-all-inside.pdf?fbclid=IwAR1CZBBGHT8qoF6AyrnYBw49gDByLdkJbqkz5q7AEJ7q-4QEVCTDyBtYGBo

Hi op I’m so glad I found your thread! My dd is in year 8, will be 13 next month and we’re about to remove her from school after not leaving the house since the middle of October to due to severe anxiety and possible agoraphobia.

I also have a ds who is almost 21, he was diagnosed with ASD when he was 8 and while they both suffer with severe anxiety they couldn’t be more different from each other. Ds is hugely popular, has a massive group of loyal friends from school and although he doesn’t drink he is really sociable.
he lacks life skills to the point he dropped out to university after 6 months due to not coping away from home.

dd had a best friend from reception and they went to the same secondary school and were the only 2 girls to go. Dd is extremely bright and was in top set whilst her friend was in a lower set where behaviour wasn’t great and she started to change and made new friends. They were drifting apart and dd is not interested in making new friends and by the beginning of year 8 they had completely drifted apart. Dd has had a total of 9 days in school since September and her school initially appeared supportive and she was given a place in a special group for anxious children for when they didn’t want to attend certain lessons ( dd hates drama as doesn’t like anyone looking at her and PE ) but they refused to send any work home for her so dd has been doing her own work.

sorry for such a long reply, I’ve been at the end of my rope with it all. She was referred to the ASD pathway in year 4 and then Covid hit and she never got accepted until February 2022. There was a 20 month wait in our area and she was eventually diagnosed in November 2023 and is also under Alder Hey for an ADHD referral.

i am at the point now where I need to do something as I feel dd is going to get really behind, shes
desperate to learn but cannot cope with school and the travel aspect which is a whole other story. She is very anxious, has obsessions ( currently Sylvanisn families and skincare ) and a very very limited diet and hates anyone coming to our house as thinks they will infect it. It’s bloody hard.

i was diagnosed last May with ADHD aged 45 so I get her struggles I really do but I wish she was living a normal life and being a teen, she spends most of the day in her room which she keeps absolutely pristine and she cries at the drop of a hat.

hugs to you and others going through similar.

Forgot to add that dd is not one bit sociable but is very good at cooking and has good life skills in general but is also very clingy to me.
attendance under 15 percent.

This is my daughter except demand avoidance.
She's 15 now and had an existential crisis 2 years ago, she's not been back to school since. She has teachers who come to our home and online lessons. We're learning what our new child is like and that's fine, they're (non-binary) ok but the sensory issues are awful so can't tolerate much. Weve recently got white noise sensory aids (like hearing aids), so hoping for that to help with upping their tolerance

Yes to the 'I don't know' response. Used to really frustrate me, but now I know to only give two options or to ask her to let me know later. So if I say do you want a takeaway? She will say yes. That's an easy answer. If I say which one..'I don't know'. I have to say tell me later, having given a few hours notice, or I have to say pizza or Chinese, rather than free choice as it's too overwhelming. She also has alexithymia, so if I ask how she is or how she feels about something, it will be 'I don't know'.

Floopani, can I ask how alexithymia was diagnosed?

I home educated mine - took her out of school aged 8. She had a lovely group of home ed mates who were a lot more accepting than her peers at school would have been.

It was actually the key to her whole ASD diagnosis. We were paying for private therapy with a child and Adolescent psychotherapist, but DD was really struggling and would reply to everything with 'i don't know'. The therapist (who also worked in the NHS) said this is alexithymia after a few sessions of being unable to get past it, recommended a private ASD assessment which we got quickly and both ASD and alexithymia confirmed.