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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

to feel so overwhelmed with ASD teenage daughter?

165 replies

StressedSuzie · 17/04/2024 17:37

She has just turned 13 and is struggling massively with anxiety.
She refuses to accept any help such as therapy or medication and insists that if everyone just did as she needed then all would be absolutely fine.
Seeing her walk out of school each day, completely drained and almost mute due to being so overwhelmed is so upsetting to see.
What do you do when your children have sky high anxiety but won’t accept any form of help? 😢

OP posts:
StressedSuzie · 17/04/2024 20:43

ClocheHat · 17/04/2024 20:32

@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.

Yes please - I’m really struggling 😢

OP posts:
StressedSuzie · 17/04/2024 20:45

WestTwoWoman · 17/04/2024 20:40

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?

School are in talks to amend her timetable for next year and no trips are compulsory but they are expected to go especially the day ones related to topic learning so she’s missing all of those and then feels behind

OP posts:
stayathomer · 17/04/2024 20:50

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.

Witsend101 · 17/04/2024 20:59

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.

gellowbelow · 17/04/2024 21:04

ZenNudist · 17/04/2024 18:15

Please teach her to adapt to the world and not expect the world to adapt to her. If she has a way of doing things that allow her to live her life that will be much better for her.

Gold star for the most ableist poster of the night.

gellowbelow · 17/04/2024 21:06

@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?

Notimeforaname · 17/04/2024 21:31

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.

Heartoverhead1 · 17/04/2024 21:31

WoopsLiza · 17/04/2024 20:27

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

WestTwoWoman · 17/04/2024 21:46

StressedSuzie · 17/04/2024 20:45

School are in talks to amend her timetable for next year and no trips are compulsory but they are expected to go especially the day ones related to topic learning so she’s missing all of those and then feels behind

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.

mummyof2boys30 · 17/04/2024 22:08

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.

stayathomer · 17/04/2024 22:17

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?

AppleCrumbleTea · 17/04/2024 22:39

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

Settlement22 · 17/04/2024 23:00

Notimeforaname · 17/04/2024 17:42

You set up the help and take her there. If she physically fights back, you take things away from her til she learns .

Insisting everything will be ok if you all do exactly what she wants, is manipulative and controlling. Dont let this continue.

When a child needs important medication, it's not the norm to just give up and listen to the child when they say they dont want it..You have to force them, for their own good.

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.

CasadeCoca · 18/04/2024 07:20

Notimeforaname · 17/04/2024 21:31

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.

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.

Cygnetmad · 18/04/2024 07:23

Notimeforaname · 17/04/2024 17:39

She doesn't get to refuse. Shes a child, you're the parent.

I guess you have ample experience of dealing with teens on the spectrum?

RonObvious · 18/04/2024 07:28

Octavia64 · 17/04/2024 20:30

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).

Sorry to derail - can I ask what age she dropped out? My daughter is 12 and secondary school has been an absolute disaster for her so far. I guess I'm just looking for positive stories!

Kta7 · 18/04/2024 09:24

Notimeforaname · 17/04/2024 17:44

KittytheHare

You clearly have no idea what my job is then.

I think you would benefit from further training on autism in girls (the Autistic Girls Network would be a good place to start - their courses, or the white paper on their website if funding doesn’t stretch to a formal course):

  • to improve your understanding generally, especially around masking. Many autistic girls and women are being much more resilient than you probably give them credit for but it is really detrimental to their mental health to expect them just to cope
  • to support these people’s needs appropriately, to avoid putting your employer at risk of a claim of disability discrimination
  • because you really don’t want to be hearing on the grapevine about even more difficult mental health problems than anxiety in young people you’ve been involved with professionally.

And to many posters on this thread: parents of anxious autistic children are generally doing our best. We aren’t usually eschewing obvious, readily available options, whether that’s neuro-affirming mental health support or appropriate educational provision. If only it just came down to ineffectual parenting on our part, that would be a piece of piss to fix!

Italianita · 18/04/2024 09:32

This reply has been deleted

This has been deleted by MNHQ for breaking our Talk Guidelines.

WagonWh33l5 · 18/04/2024 10:30

Notimeforaname · 17/04/2024 21:31

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.

Autistic people spend most of every day having to fit in and live life not to how they want or find easier. So she’s already doing that.

EilonwyWithRedGoldHair · 18/04/2024 11:59

Cygnetmad · 18/04/2024 07:23

I guess you have ample experience of dealing with teens on the spectrum?

Or pre-teens. My ten year old DS will refuse to do things - getting the nasal flu vaccine was one thing. I disagreed with his decision, we talked about it on a number of occasions and I couldn't change his mind - he finds it physically painful but has been told by previous teachers that it doesn't hurt. How would I have made him have it without damaging our relationship and without the risk of injury? Would a HCP give it to a distressed ten year old who was refusing?

The only things to take away are to do with his special interests and that brings it's own set of problems with increasing anxiety, dysregulation, violent meltdowns, EBSA. He had a natural consequence in this case - he caught flu for the first time and found it very distressing.

It's not as easy as you're the parent, just make them.

Octavia64 · 18/04/2024 12:15

@RonObvious

My DD dropped out in the first year of a levels

At the time she had no diagnoses but was clearly anxious.

She was also very physically unwell with significant joint pain and fatigue.

She was referred to the me/CFS people and was eventually diagnosed with CFS, fibromyalgia, hashimoto's thyroiditis, adhd, anxiety, depression, and is now in the process of getting the autism diagnosis as well. (I mean technically they are assessing her because they wouldn't assess her until she'd been on the adhd drugs for two years so they could see "what was left" and it turns out there is a lot left).

Because of this we know quite a lot of people who have dropped out of school at various points. There are alternatives to mainstream school and my DD did much better once she felt in control of deciding what courses she did and her general academic direction,

College was much much better than school (she dropped out of a sixth form where she had had a scholarship). Some colleges offer a 14-16 pathway for students who have been home edded/sick etc to get GCSEs in a non school environment and the students I know who have done these found them much better.

Btecs and access courses are also very good for applying to uni from - my DD did an access to science course which she topped up with a level maths studying herself and sitting the exam as a private candidate.

The access course was at an FE college and they were very supportive but also the lack of school pressure (you must revise 2 hours a night or you will fail kind of thing) made a massive difference.

I have worked in education mostly as a teacher for twenty years and there are plenty of kids who really just don't cope well with the pressure and social expectations of school. It doesn't mean they won't cope with adulthood, just they need a different kind of support to get there.

RonObvious · 18/04/2024 13:01

@Octavia64 Thank you so much for taking the time to write that. There’s a lot of similarities with my daughter - her school anxiety built up to school refusal (she would genuinely try to go, but just couldn’t) and then it all culminated in her sleeping 16 hours a day for a month. We’re still at the beginning of looking for diagnoses (although have suspected ASD since she was 4). Up until now, she’s always got by okay, so there was no question of her ever being assessed. College for GCSEs is a really good point though - we could probably manage some kind of home education until then, and at least that’s given me a good starting point! Thank you!

radioactivekumkuat · 18/04/2024 17:14

I was quite like this as a teenager, really feel for your DD and your family. I was a difficult teenager to be around too. Adolescence is such a hard time anyway, and autism makes it so much harder to understand and cope with the changes. This is a jumble of thoughts, but a few things that helped/would have helped me.

In retrospect, less school would have been amazing for my wellbeing. Would never have agreed to it though, because even though it was awful it was “what I do”. Even as an adult I have a hard time calling in sick when I’m ill because “on weekdays I go to work”. The problem for me is that the minute you take away work/school, time becomes a blank space and that’s quite scary - I just can’t imagine doing anything other than my normal day. I also feel really anxious at the thought of then having to go back to work and answer questions about where I’ve been. Perhaps a suggestion of “instead of school we/you can do x, y, z” would help to make things a bit more concrete.

It helped me to find out that I’m not alone. Going to a women’s autism group was life changing, as was reading about others’ experiences. For such a long time I felt like the odd one out, and I didn’t fit in with the boys in my high school’s SEN hub either. It was only when I met other autistic women that I had a feeling of community. It sounds like your DD might be having the “why is everyone else wrong, why am I the only one like me” feeling, which is a very difficult thing. I remember it really hitting me at adolescence when I began to understand that other people were separate sentient creatures. (Rather than copies of me that just weren’t very good at being me!) I think I was 13 or 14 when I realised that everyone else was in fact normal and I was not. It was a really hard time.

Social Stories were good for me too. I think they’re often used with younger children, but I’ve had them written for me as an adolescent and adult. If they’re short and simple enough they can be memorised, I mutter them under my breath a lot when things are difficult to cope with. It’s comforting because it tells you what’s happening, that it’s all OK, and how to respond. “Sometimes I am late”, “Sometimes plans change”, and “Sometimes other people are wrong” are my greatest hits.

I hope something in this jumble is helpful, even if it’s just a “this random internet person has been here and came through the other side”.

StressedSuzie · 18/04/2024 17:30

I am so grateful for people taking the time to reply.
It must be such a lonely place for her and it’s also a lonely place for me as she’s not your type on anxious child that wants to be near me all the time - she finds me very irritating and I have to tread very carefully so that I don’t talk too much, too loudly or try and talk to her when she want peace.

Its difficult to know how to handle her as her dad is the opposite to me, quite cold emotionally and very socially awkward ( he wonders if he is ASD but they didn’t test in our day although all of his school reports indicate he was really struggling ) and she has little to no relationship with him as he doesn’t seek her out like I do so she takes that as that he’s “ lazy “ 😢

I have managed to get school to take Drama and PE off her timetable completely for next year now and any days she finds too much between now and July she will just stay home with me and we will pick somewhere different to take the dog on a nice long walk and she can have her favourite takeaway ( in her room obviously so she doesn’t have to see or hear me eating! )

Its been so helpful to know that I’m on the right track by not forcing too many issues and accepting sometimes what she needs is what she needs regardless of how it makes me feel etc x

OP posts:
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