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

I have DTs aged 16... only one diagnosed ( only last year) but am 100% certain the other is also autistic (she's very socially anxious and doesn't want an assessment yet... school very accommodating without it so all good for now... suspect it would be useful for her later if she's able.

Diagnosed twin has suffers from anxiety & ocd too this has been much better later following therapy. An outside observer would probably not guess she's autistic as she masks extremely convincingly. Obviously this is exhausting for her but she's not ready to drop the mask outside the home as she's a people pleaser and desperate to be liked and worries if she shows her unmasked self she won't be.
So she's very sociable and popular at school, she sets herself very high standards for her academic work, works hard, and usually achieves said standards... exam periods generally lead to more meltdowns at home, and she does better if she starts exam leave early and works herself at home rather than group revision in school. She has individual accommodation and a small amount of extra time for official exams to accommodate her anxiety and allow her to vocalise/ move about if she needs to ( so she can drop her mask a bit to concentrate on exam). She does get stress and grumpy at home... but meltdowns are becoming fewer as we all adapt and learn more about triggers... on the whole though, she's great and coping well 🤞. She aims to go to uni and travel and work abroad and do all the stuff! She wants to live away for uni and can't imagine staying here!

Her sister is extremely socially anxious and dyslexic as well (undiagnosed) autistic. She avoids people/ eye contact/ leaving the house/ socialising as much as she possibly can. Meltdowns can come form too many people/ feeling penned in/ too much noise/ too many flashing lights/ exams or school stress... they are usually teary episodes rather than angry/ frustrated like her sister.

She doesn't so much mask as just hide as much as possible! School now have it as part of her pupil profile not to ask her questions in class if she doesn't volunteer and any presentation work is done direct to teacher either by herself or with one trusted friend... or in some cases she can submit a video. She also gets extra time and individual accommodation for exams... more extra time than her sister and that aspect is for her dyslexia really, she is greatly calmed by our cats and by her artwork ( she's very talented). Left to her own devices she'd not leave the house, but she also doesn't like to do the wrong thing so her school attendance is good, recently she's attended a couple of very small social events with friends, and she is able to just about deal with shops and restaurants but these things leave her completely exhausted at the end of the day... she sleeps at least 10 hours most weeknights and at least 12 on weekends. She wants to go to art school, then will likely set up an Etsy business or similar to sell her artwork/ crafts or whatever... she says she's never leaving home.

Should probably have said : outgoing twin has suffered with disordered eating and self harm in the past too... 🤞 she is not dealing with either of these right now, but it's always a worry at stressful times.

DD now in 6th form. Turning point for us all was when we started to openly talk about the possibility DD was autistic around 14. Significant sensory and food issues. Intense interest in small number areas/topics and next to zero interest in anything else. Can appear uncaring but is actually very thoughtful and loyal. Very observant with a brilliant memory. Incredibly quiet with most people/groups but with certain people she'll talk and talk and talk! Very self confident in her intellectual ability and rightly so, she's very logical and academic. Has never been into a shop on her own but will go out with friends though definitely prefers to stay home. She has a small group of lovely friends and she has had a generally happy time at school for which I am incredibly relieved and thankful for. Despite this, she is lonely. She doesn't think she'll ever be able to have a job. She hates uncertainty and change. I worry about her a lot but I'm also so proud to be her mum. She faces struggles everyday because life involves interacting with people and eating food and wearing clothes and being clean! I can see just what an effort all this is for her. If only she could just stay home, safe with her maths and Nintendo Switch but she can't. She wants a full life, she wants a soulmate and a family and home of her own one day.

I've got an 11 year old girl with ADHD and ASD in year 6 and I've found this thread incredibly useful. Thanks everyone!

We suspect DD age 15 has ADHD, though finding a psychologist to assess her is proving challenging.

Much of what has been listed here is familiar to me.

Hyperfocus followed by complete abstention (art, cross stitch, her Nintendo)

Urge to info dump / talk at me, acknowledging she doesn't need my interaction during it.

Black and white thinking / anxiety eg about changes to routine at school, inset days and trips especially.

Fast and sometimes inaudible when speaking.

Intense but challenging friendships; the wider friendship group are all ND in some regard.

Likes the academic side of school and the teachers, easily annoyed by the other kids who sadly all know how to get a reaction out of her.

Excellent in maths and computer science, less so in English. Articulating her thoughts in writing is a real challenge for her.

Needs a task buddy for routine tasks like room tidying, showering.

Thanks so much for the thread - I recognise a lot of what pp and Op are saying, lots of food for thought here.

Hi Garo, your post is important. In my opinion, the use of ' neorodiversity' rather than disability and the diagnosis of autism or ASD rather than Aspergers contributes greatly to many peoples voices being unheard in discussions of autism. There is obviously a huge difference between a child with predominantly social and communication disability but who can participate in a stereotypical life experience of a child albeit with adjustments and support to a child who has severe communication disabilities as well as physical or learning disabilities and who faces much greater challenges to participate in general life and requires life long support to live a life.
My daughter was diagnosed with aspergers at 5. She has significant challenges in how she functions socially and how she copes with many things and now at 8 her difficulties are becoming more pronounced and as they are beginning to impact those around her and her academic ability teachers are now beginning to see behind the mask. It impacts our life significantly but silently to the outside world. She qualifies for middle level child disability payment. She is hugely vulnerable to the world around her and I will need to continue to fight for her to be supported in school. But she will have a life which will be her own and she will follow a path she chooses.
I think it's important that for as long as Autism includes the Aspergers level of disability that voices such as yours stay in and are included in the discussion. I get the impression you felt it wasn't worth posting your experience as no one would be able to relate? Please post your experience in order to be heard. It might encourage others with similar experiences to post also.

There are so so many things that tally with my DD that have been said here.

I wish I had seen it earlier as I am really worried about how she is going to cope with mainstream secondary school and all the social politics that go with it.

Really really appreciate each and every
comment xx

This sounds so like my DD, only just starting to go into shops, caught the train on her own for the first time recently. But so very confident in her intellectual ability, and thinking about Oxford.

So many contradictions!

The sensory issues around food have been such a challenge, started when she was a toddler. Classic ARFID presentation but luckily never needed to go down a PEG route.

For years, she lived on pringles, hot cross buns, chocolate, value tesco mini pizza and pasta with a plain tomato sauce and the occasional fish finger plus mini breadsticks. If any packaging changed, she wouldn't be able to eat the contents.

Anorexia was terrifying but strangely the family based treatment gave her opportunity to work on her confidence around food and her diet has improved. On holiday in italy, she ate a whole pepperoni pizza each time at three different restaurants. She's just had a big bowl of homemade spaghetti bolognese for dinner.

The main thing is that she can go to the cinema and out for a pizza and find something that can fit in with her friends.

Over a third of women/girls with serious eating disorders are thought to be autistic.

Yes I've read that about eating disorders which is cou ter to the "want to be thin" message and more to do with the food/mentalchealth isn't it? I am morbidly obese and think it's to do with wmexecutive functjon/food issues too...

@CountryShepherd some really big similarities with your DD, and several others on this thread. The food issues have got so much worse lately for us. Her diet is very restricted just now but she is just about getting enough of what she needs and she's an expert at spotting and carefully picking out even the tiniest bit of onion from a tomato source 😂 She is also considering unis but whether she'd actually be able to go through an interview/gruelling process like Oxford I'm not too sure. Luckily she's currently fixated on a brilliant uni that might not require an interview.

I went to Cambridge and actually think a normal uni would have been better for me. Lots of isolation and reading for essays when actually classes and seminars would have meant I saw people!

To everyone on this thread: reading your posts has been an honour. You are all doing such a wonderful job with your DDs; they’re lucky to have you. Thank you for listening to them and giving them the support they need to thrive.

DD 14. Lots of this resonates with our situation. All seemingly good until age 13 when oh my goodness did our world fall apart. DD what I would say is an expert masker, compliant, good grades, sets herself high expectations, very black and white thinking. Fabulous at learning languages. Likes routines.

As she has got older, she has struggled with more anxiety, restrictions in what she eats, lots of what has been said already. She won’t go out on her own. The very idea of catching a bus on her own would be the end of the world.

Dd not quite ready to accept going for a diagnosis although we’ve said it might help her later in life. She doesn’t want ‘a label’. She is at least now after a year of what I can only describe as hell to acknowledge that if she is autistic then it is what it is and we will all work together to figure out what works for her and what doesn’t.

What I have learnt is to take things one day at a time. It took us ages to convince school that many of the issues are not helped by loud and busy environments and constant unanticipated demands. Thankfully they are more supportive, but only after social services intervention and them saying that the child they see at school is not the same as at home. School have made adjustments and things now a bit better. What did help was learning that you don’t need a diagnosis to request adjustments.

Big hugs to all the parents trying to do their best for their daughters, it’s super hard.

Most of the issues mentioned fit my DD too. Happy at 6th form now. Emotionally immature so Uni will mean fully catered accommodation and a very anxious Mum back home.

I think mine will need fully catered and I'm worried already about her living out in yr 2. ... and the expense. We are low income

Blimey really resonate with a lot of the posts.

My dd really started to struggle at 13/14yo, periods were a nightmare for her and she developed anorexia which was honestly the worst time of my life.

She's nearly 18 now and generally doing okay, we still have a little way to go with food but she's much better than she was.

I tried getting her a formal diagnosis but they decided some of her communication issues were linked to a hearing issue so said she didn't meet the criteria.

In my mind she's definitely autistic, she ticks every box.

It’s so sad to read so many posts where eating disorders seem to be a big issue for girls, particularly those with ASD.

This is 100% a concern of mine going forwards as I can see the control element there already with DD along with exercise and so on.

I am going to get a private assessment done, I do worry about that after seeing the documentary last year regarding private assessments and that such a high percentage of tests give a diagnosis but I then think that this is likely because parents wouldn’t be taking a child for an assessment if they weren’t concerned or seeing lots of signs?

I think it started as some kind of way of trying to fit in with other girls and be 'normal' but it got a grip quite quickly. She was a bit overweight according to the charts but she does everything 150% and lost over 2 stone in 8 weeks. The flip side is that once she made the decision to 'recover' it was like a military campaign! She restored weight at top speed. We had amazing NHS support.

In terms of university, I do want her to consider her options and look at other places too. I have no doubt she could cope academically with Oxbridge but there are lots of other social aspects to consider. Being a bigger fish in a smaller pond might be safer.

Tony Attwood is an Australian professor who talks brilliantly and engaging about girls and autism.

I read something around sensory seeking to do with food that made sense to me - that’s an underreported element that can feed into overeating of junk foods and contribute to weight issues.

My DD's food issues are right up there with being the hardest issue to deal with (for her and for us). For her it seems almost all food tastes 'disgusting', is an unpalatable texture, smells too much, and is the wrong temperature. Often red coloured food is the most offensive to her. She rarely makes a fuss though, just sets about cleaning each strand of spaghetti before eating it. She would love to be able to eat more.

We are having lots of uni discussions. Thinking through logistical things like meal times! She'd have to go into catered halls. She's got fixated on one uni and one course which is highly competitive so I'm really trying to gently present other options. She's used to coming top in her subject and hasn't experienced rejection.

Also ultra processed food is always the same but an apple? Could be juicy, tart, crisp, squishy etc.

We found this book really useful to help understand. Lots of strategies for teenagers too.

Yes I know exactly what you mean - whereas the sensory experience of eating Cadbury’s dairy milk or walkers is endlessly the same.