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

Have the wheels not fallen off for anyone?

DD is 10- while she was formally diagnosed at 9 (thanks Covid) teachers have been treating her 'as if' ASD since year 2, and it was obvious to us since toddlerhood. When diagnosed the psych said she 'had a very classic presentation' (i.e. not a 'girl' presentation)- she does pretty well at school, has almost zero communicative speech unless it's a request (constantly talking but all scripting), photographic memory and perfect pitch. Eats everything. Doesn't mask Stims at all.

Some noise sensitivity but manageable. Also has dyspraxia. Is generally very content- loves reading and drawing and swimming. Likes school (loves structure).

She has absolutely no interest in social relationships or friends and I wonder how that's going to play out, whether she'll just not be bothered and it might be a bit protective? All the dire warnings seem to be linked to social struggles. That's what happened with DN at 12, the wheels fell off socially and was out of school for 4 years.

And if the wheels did come off for you, what do you wish you had done differently?

Interesting thread, as my daughter (11) has just started on the ASC diagnosis pathway. BUT - I'm intrigued - did a diagnosis help with the wheels not falling off or putting them back on?

Given that - as I understand it - you get the diagnosis and little other help. Did the diagnosis alone help in managing your children? ie. with better understanding etc.

Wheels didn't fall off until 14 here. School had good provision and she has friends and she's very bright. Has interests etx.

Not sure of anything we'd have done differently as it was good until recently.
I really thought we were quite lucky

But now everything's "wrong". And we might consider medication if offered. Honestly she was poster girl for managing autism until this last year.

I'm not even sure what it is. Hormones? Being a teenager mixed with autism? Growing up? No longer the age where mum can fix it ? Pressures of school?

I definitely think a diagnosis helps though! In terms of self understanding and being able to remind yourself as an adult that they're struggling.

Always had lots of phobias, intrusive thoughts, sensory issues and OCD but was still a mostly happy child until around 13. 13-15 have been so very hard. OCD has got much worse, her anxiety has made her physically ill with tics and stomach aches and skin problems. She seems to cling onto things from the past and is very immature now for her age. She is very compliant and scared of getting in trouble so tried to keep going to school but phoned me crying endlessly until school said she was too ill to attend. Hates loud noises, too many people, tells me I am rushing her all the time (when I’m really not). Has started to speak so quietly it is hard to hear her except when at home. She only has two friends who she made in primary school, no friends in secondary school. She spends every bit of free time alone in the SEN department. Can't make decisions, worries about everything, is a perfectionist to the point where she can’t do her school work a lot of the time. She has now changed schools and is in medication and things are slowly improving a little. I have to take things one day at a time because I fear she won’t manage GCSEs and I have no idea what her future holds. On the positive side, she is the kindest, most loving DD i could wish for. She does express emotions and she is extremely kind and empathetic. Best of luck with everything.

Yes morning nausea and sometimes vomitting is our current thing 😔

I have to disagree here. Schools are not 'petrified' - they're happy if that's best for the child. The council 'becomes involved' because the schools have a duty to notify them when a parent takes their child off roll with the intention to homeschool - the council then carries out safeguarding checks on the home to make sure that the child will be safe and properly looked after. I'm sure you must be aware that there are potentially significant risks to a child when it is not seen by any person outside the immediate family on a regular basis.

I do agree that some children are not suited to mainstream school and yet do not need something like a Resourced Provision. The Elective Home Education movement is gaining numbers and there are a lot of good resources to be found within it however.

School really isn't autistic chold shaped and there's often little provision for those with additional needs that are academically capable.

Our other issue seems to be around tolerance. My 15 year old can tolerate less now and leaves midway through most meals, goes to her room to avoid her sisters noises/playing when they used to play so happily together.

It all seems so much harder.

That sohnds a fab balance and your child sounds really in a good place with your support. That's interesting about tolerance though- if in a home Ed environment you're noticing it too maybe that is why things can become a struggle when they're an older teen. It would so help if we were told it's a "thing" so we could prepare for it!

I think there must be so many neurodiverse people home edding. Either due to lack of provision or having a nd parent who has realised it would have suited them better. We looked into it many moons ago ad we considered it for infant school age and met some lovely home Ed families.

Mine actually loves school. She's both overwhelmed and exhausted by it.... and loves it. If she was struggling at school I'd be keen to look at alternatives but it seems to be her regulating factor.

She likes the routine, she likes her friends and she loves learning (very bright/grammar school). She's lucky it's not a school with behavioural issues/crowded control as many are.

BUT it is also intense and full on and exhausting peopling and many demands. I've started another thread about what the average teenager does in the evenings as mine is now shattered.

Thanks that's a really helpful post 🥰.

I think I ask what others do simply in a case of wanting to get it right myself and not inadvertently make it worse. Ie cause her more isolation or bad feelings. I don't really "care" in terms of how our family are perceived or how she's perceived. Purely that she has low moments and I don't want to make it worse /want to support her.

Yes ditto to the awful parents! One of them is in quite well to do circles now and still hasn't a clue how awful they were. Probably there much of the motivation to "do better" has come from!

I really hope my children don't go on to talk about me like that though 😔. Who knows! I'll be saying "I did my best/tried hard" and they may well be saying :but what about xyz!".

The last few posts have really hit a nerve with me particularly the last line in the above post about being a good parent as this is what I doubt all the time and worry about whether my DD can “ feel “ how much I love and advocate for her.

My DD is completely and utterly exhausted after school to the point I generally don’t see her until around 6pm when she wants food.

I have offered her online schooling if she’s finding school too difficult but she’s adamant she doesn’t want this in case she doesn’t make it as a doctor if out of school.
I do think it’s only a matter of time before she can’t cope in the school environment though if I’m honest but it has to be her decision or she will blame me for making the wrong one all the time!

DD has just turned 15 and is in year 10, she is on the waiting list for ASD assessment. DH or I try and be home when she gets back from school to offer cup of tea, snack, listening ear etc, but then she mostly disappears off to her room. She does a lot of art, drawing, painting, and creating weird and wonderful things. She joins us for our evening meal (we also have 17 yr old DS, not ASD, also spends huge amount of time in his room, but much more chatting to friends!). After tea she disappears off again, homework happens, she doesn't like to be questioned about it and there are no complaints from school so I am assuming that it gets done appropriately. There is also quite a bit of thudding coming from her room at this point, I think she runs on the spot, dances, paces and does exercise.

I really relate to what you say about wondering if you are doing the right thing @WonderingANDwoeful. I question myself constantly. DD is very keen to attend school, even though she is obviously finding the sensory environment very difficult. She spends all breaktimes and lunchtimes in the library on her own. We pay privately for her to do art therapy as there is no support from CAMHS.

Oh, and I am also having therapy, the sit in a room and talk kind. It helps a bit.

Just as a bit of relief... youngest just said "eat this bit of cookies. It is broken and so not suitable for my lunch" with the straightest face. And no idea why I found it funny!

RhinestoneCowgirl
I am due to start counselling so this is good to know you find it helpful.
i definitely need a space I can be upset; frustrated and any other emotion not in the earshot of DD!
Im so pleased you have got your daughter into creative arts as these are a great way of releasing confusing emotions and so on.
My DD hates anything creative so that hasn’t worked this end sadly

Threebeanchilli
How old is your youngest?
My DD said to me last night when I asked her if she was going to attend her school residential ( hoping she would say no ) that the likelihood of her attending was about a million : 1
I said that’s quite specific and she replied with a Google definition that said “ Extremely unlikely to happen so don’t worry, calm down and be happy “
I replied 😂😂😂 and she replied “ You are strange, this wasn’t a joke “

.

Ha wondering they are funny aren't they. I was supriswd mine wanted to attend her residential and wasn't going to make her. School put in some extra support as I thought it was going to go very pear shaped.

My youngest is 12, likely adhd/autistic but unless I pay privately won't get diagnosed as masks at school - and we have no money. She comes out with some great lines though. The look of absolute shock/disgust if something touches on her plate as if "why in the world would anyone serve THAT" still makes me inwardly smile. Its all so obvious to them at times.

We've now got "that's not mummy friendly" around various TV programmes on the basis I'd rather they didn't watch it. So they watch it without me 😂.

My 16 year old DD isnt diagnosed but to me (and to her) everything points to autism.

She is super high achieving at school, very bright plus intense focus and discipline. Adamant about getting all 9s at GCSE, her mock results were stellar. Particular excellence in music and languages. Contributes well in class apparently. Special interests around marvel and star wars, can talk for a long time on these! She has expressed the feeling that she is 'weird' and doesn't fit in.

Better with friends in the last year or so, currently has one close friend, who she considers her girlfriend but talks about being married to a man in the future and having children. Finds social interaction stressful and difficult, even with her grandparents.

Can't bear unexpected change. I put some temporary curtains up in her room as we'd just moved house. When she came home from school and saw them, she sobbed for half an hour till I took them down.

Lots of sensory issues with food since she was a toddler. Period of anorexia this time last year but we managed to navigate through that and she is at a good weight now. Still a lot of anxiety around food re timings etc. Can be obsessive about exercise, we also watch this.

Year 11 has been better for her and I think she will continue to find her tribe.