to feel so overwhelmed with ASD teenage daughter?

OP - posting on SEN boards is usually a better bet to avoid this sort of knee jerk prejudice from people who lack an understanding of autism and are unfamiliar with evidence-based approaches to helping autistic young people cope with anxiety and sensory issues.

I can't believe I am reading this. Obviously you have no knowledge of ND children (or perhaps any children come to think of it)
Taking things away from an autistic child doesn't work, it makes the situation 10x worse. My daughter would escalate things to infinity rather than back down.

The need for control comes from her anxiety. The more anxious she is, the more she needs to control.

Notimeforaname
But someone doing something to try and change a situation is not manipulative- you can try to change things or try to control things without being manipulative or controlling- they’re labels attached to trying to hurt someone or gain the upper hand in a selfish way as opposed to trying to survive or figure out how to survive if you know what I mean?

Theres a fb group not fine in school which u may find helpful. My son is 11, ASD and becoming an emotional based school refuser. Not much help as we are only beginning the threrapy route as CAHMS dont work with children once diagnosed here.

That sounds positive. I think it sounds like your daughter has a relatively decent understanding of her main areas of difficulty, which suggests she’s got a good level of insight for her age. And she clearly has plenty of strengths as well - and at this stage of her development, it’s vital (for her sense of self and self-esteem) to focus on strengths as much as possible. You having her back now - and reassuring her that you do - will make all the difference to not only your future relationship with her, but her own future confidence.

Adolescence is hard on lots of kids, but it’s usually the worst stage of life for kids who have ASD. So many pressures, the nature of school, increased demands on the social battery capacity, and of course the bodily changes and learning to deal with new weirdness and discomforts. In ASD, if the sensory stuff can be well managed, a lot of other difficulties can then present as less severe. It’s hard to explain just how stressful and exhausting it is to have a brain that simply can’t filter out non-essential stimuli. I’m not completely on board with the “intense world theory” of autism, but a lot of it does resonate with me; and even if it’s not completely accurate, it really helped my parents understand a bit more about why I was the way I was. (Am.) So if you haven’t come across it, it might be helpful to read a bit about it and see if it makes sense in relation to your daughter.

Are you getting any assistance in appealing the EHCP decision? It can be a very stressful and adversarial process for parents to have to deal with. But it’s hard to hold a school to any promises without an EHCP … !

I’m a mother and was also a teenager very like your daughter, so am sympathetic to both angles here. It’s horrible to feel stuck and unable to sort everything out for your child, and you wouldn’t be asking for advice if you weren’t having a terrible time trying to deal with it. I don’t usually participate in autism threads on here because it’s frankly depressing to see how frequently people give advice that in effect is “just stop being autistic” or “pretend not to be autistic”, but I couldn’t ignore this one.

Your GP sounds pretty knowledgeable to be recommending meds over therapy; I agree with other posters that therapy is likely to be pointless for now. Not only does it have to be a voluntary process, but it takes a long time to develop enough trust in a stranger to talk to them in the first place. From how you’ve described your daughter, I don’t think it would be a good use of your time to push her on the therapy issue. But although meds might be useful, CAMHS waiting lists are dire, as you’re finding out the hard way. So if there’s any scope for you as a family to get some private care/possibly meds if appropriate, with a view to switching to shared care when dosage is established, that would be worth doing. Please talk to your GP first to see how receptive they are to a potential future shared care arrangement.

I do think it’s likely that you might find that some of the difficulties really do lessen if her environment meets her needs a bit more. It’s great that you’re already engaging with the school about managing her timetable better. Drama and PE are great for most kids, but those particular classes can present so many challenges for children like your daughter that, if there’s a way of sitting them out, or only minimally participating, that’s likely to be really helpful as an adjustment. ECHP or not, schools still have to make reasonable adjustments for disability. And it’s not like you’d be asking for anything complex or expensive, just for her to be allowed to do some other quiet work during those times.

I was/am exactly the same about noise and sleep, and my family just didn't - couldn’t - understand it. And my noise sensitivity massively worsened during puberty; there’s a decent body of evidence (both proper and anecdotal) that the sensory symptoms of ASD can intensify during puberty - and for girls/women they can particularly intensify with hormonal fluctuations. So I get that there’s a gulf between her needs and the night time environment - and it might get worse for a few years before it gets better, if it ever does. Noises are a problem for people like me and your daughter because it’s so hard for our brains to relax and switch off to get to sleep in the first place - and every noise is a new stimulation and keeps the brain on alert mode, as it were. Although it’s not ideal for an ASD teen to have change bedrooms (or indeed pretty much anything!), it might be worth considering if you could reconfigure your home to swap her bedroom away from the toilet. She will probably have to get used to earplugs of some sort though, so encouraging her to do that would probably be worth your time. It’s really a trade-off: she trades a little physical discomfort for a period of time while she gets used to them, for the enormous daily mental and physical discomfort of never sleeping properly/being stressed at bedtime and arguing with other family members. There are loads of different types of earplugs available now, but persisting with one type until she gets used to the physical sensation of them is the hurdle there. I sleep with the classic 3M factory earplugs, because I need to block out as much sound as possible. Pillows are too noisy for me, that’s how ridiculous it can be. But I know people who love the soft mouldable silicone blobs instead, and others who like the headband type earphones for sleeping. In the meantime, a noise machine might help (and in case this is useful info, “pink” or “brown” noise might be better than “white” noise, which is too high pitched for lots of noise-sensitive people).

Wishing you and your family all the best. And feel free to drop me a DM if you like.

I don't think I've ever agreed with a post more.

A teen girl who is panicking because she is overwhelmed is not being manipulative or controlling, she’s struggling. Modern language for normal human emotions in the face of difficult circumstances is out of control now.

I mean something needs to try to be enforced. School for example, If she cant handle mainstream education but refuses to go to an adaptive school which could possibly meet all her needs an make her more comfortable, should she just be left to miss out on her education while she continues to feel so unnerved at school and refuse more classes/subjects?

The answer is to do/try nothing except leave it how it is?

And of course not every single demand or want is down to ASD. She is still a child and a smart child and children absolutely try to control and manipulate to see what they can get, its part of growing up.
The difficult part as op says herself is trying to understand what's asd, vs personality, anxiety etc.
It's never a good idea to give a person everything , exactly how they want all the time, neuro diversity or not. It's not attainable nor realistic.

@ZenNudist would you tell a wheelchair user they need to adapt better to the world around them and not expect the world to adapt to them?

Gold star for the most ableist poster of the night.

Here we are:

https://www.mumsnet.com/talk/special_needs_chat/5052396-challenging-teens

I've asked Mumsnet if we could please be left out of Trending/Active threads.

We found that our ASD DS couldn't begin to access therapy until they started on medication. He only agreed to medication when he reached rock bottom (and we were there with him!) and he concluded himself that he couldn't be any worse off than he was. Medication can only be prescribed by a psychiatrist and we found that my son was more receptive to taking advice about needing medication direct from a doctor rather than from a therapist. He anticipated that the therapist was going to make him feel uncomfortable by talking about difficult issues so he didn't like to speak to them. After he started medication and the anxiety started to reduce then therapy could properly start. It's a horrible situation to be in and it can be difficult to see the way out of the other side.

Notimeforaname
A teen girl who is panicking because she is overwhelmed is not being manipulative or controlling, she’s struggling. Modern language for normal human emotions in the face of difficult circumstances is out of control now.

Some of these responses are mind-boggling. But my world is very ASD-centred and I forget how ignorant NT people can be regarding the challenges.

My DC's therapist will only work with children if they want to be there - it was the first question she asked my son. She put a lot of emphasis on building a relationship of trust and didn't try in any way to "fix", just accept.

That sounds … pretty reasonable, on the whole. She’ll probably have to develop some sort of coping technique for teachers raising their voices (presumably at other students?) as that’s unlikely to change, but the rest seems uncontentious for a kid with an ASD diagnosis who’s struggling. What’s stopping you talking to the school about allowing her to sit out of PE and drama? And surely school trips aren’t compulsory?

Me too.

@StressedSuzie I very much feel your pain. I realise you are looking for answers, but I wonder whether you’re interested in a thread that could be moved (or start another one) off the beaten track? Just so that we can support each other. I’m in a very similar situation.

It is truly exhausting.

When my AuDHD daughter dropped out of school her anxiety improved substantially over the course of about 6 months.

She was then able to make decisions herself about what education to access.

(She is now at Newcastle uni studying physics).

Exactly!

Some of the posts on this thread are devoid of any empathy........and NT people say autistic people lack empathy!

Sometimes i think it is NT people who are so inflexible. There is one way to be a human, the NT way. There is one way for people to engage with the world, the NT way. There is one way to parent, the NT way. There is one way to be educated, engage socially, relate to your child, and if you don't do it you must need medication and therapy so you can submit. Teach your child if they can't manage then all they have to do is try to be NT and do and experience everything like NT people do. Fgs

I have supported a teen to participate in similar circumstances. NOT BY FORCING THEM. Actually by backing off, working with the professional to find safe ways to begin to allow them to establish a relationship, and access support at their own pace, whilst remaining within their own tolerance. This requires patience and an understanding of autism, and of control as a mechanism to cope with overwhelming anxiety. Forcing autistic people with high anxiety to do things is just likely to cause more distress, and as PP says, potentially trauma.

Asking staff not to shout is a reasonable adjustment you could ask for. If DD would attend school without Drama and PE then seek a reasonable adjustment to her timetable? Plenty of autistic kids have tailored timetables to enable them to access a suitable education.

My dd is a bit younger bit I am also on the back foot with the mix of autism and hormones.
If only it was as straightforward as depriving her of everything untill she complies. Her world, and ours by extension would shrink until nobody can function.
Sending strength OP.

Having been there, you can take a horse to water but you can’t make it drink. My daughter sat silently in a therapy session refusing to talk on the one time we got her through the door and then she wouldn’t even get out the car. In fact it got to the point that the thought of therapy made things worse. We stopped after just a few sessions as it was so distressing for her.

Your suggestion really can’t be coming from a place of experience, or at the very least, success, surely?