to feel so overwhelmed with ASD teenage daughter?

I don't think it's doing a child any service to treat them like they are fragile. This just increases anxiety.

I guess everyone is different, obviously. My son needs appropriate pushing otherwise he wouldn't do anything. Being gently pushed helps him and that is what I'm advised to do. I'm trying my best for him to gain some kind of independence. Within the past nine months he's improved greatly. Obviously it doesn't work for everyone therefore please ignore my posts if this is the case for you.

This is what we are having to do with dd in burnout. Demands push her further in.

Yes it’s a nightmare, but we want her to be well and healthy again. This is a temporary situation due to illness. I don’t think she expects it long term.

We have to treat her like this because she is ‘fragile and will break at any moment’

Increased demands just cause self harm or meltdown. She doesn’t want to be like this.

OP, I really can empathise. My youngest son could no longer mask at school by the time he was 13. Things have not worked out well for him.

However, the approach that worked the best was by being calm and gentle and trying to remove as many 'demands' (which could be anything that causes anxiety) as possible. This includes not expecting homework, giving the individual a safe place to relax and self regulate at home, keeping the channels of communication open for the individual.

Communication can be difficult with any young teenager, but it may be even harder with a neurodivergent teen in the midst of a mental health crisis. My son began sending me songs when he was slightly older than your daughter. The songs were pretty dark, but they gave me the opportunity to open a conversation starting with, 'Is this how you feel?'. He also communicated (as we all do) through behaviours and keeping calm through this was very difficult indeed. Like your daughter he experienced periods of selective mutism. In fact nearly everything he experienced had its roots in exceptionally elevated levels of anxiety.

Eating disorders are very difficult to support. My son still spends hours in shops trying to decide what he can eat. He has bulimia nervosa, so it is slightly different. I received counselling from BEAT to help me cope with the stress of supporting my son with his ED.

Although PDA (Pathological Demand Avoidance) is a controversial profile, and some local authorities do not acknowledge its existence, the strategies offered by the PDA Society UK (under the acronym PANDA) have been really useful for my son. You can find them on the PDA Society's website.

I am aware that I have rambled, but do explore the PDA Society website.

With respect to food:

If you are taking her shopping and she is choosing foods she is "happy" with that's a good start.

For the takeaway and Maltesers, step back a bit. My strategy was to say that we only had enough money for a takeaway once a week and my child could decide which day it was. But once the money was gone it was gone.

ASD teens do respond better to natural consequences and this is a very natural way of presenting it while still giving her control.

You might find it helpful aside to give her a budget for food each week - some takeaways are a lot more than others and if she knows she has for example 20 pounds she might choose to get two cheap McDonald's rather than one expensive takeaway. That's the start of her being able to make decisions and balance her own wants.

Then you need to not give in.

Emotive posts from people who appear to 'resent' an autistic child's anxiety do not seem terribly helpful.

If you have a distressed autistic teen you need to calmly adult, in recognition that they are struggling with their environment, and that will require adaptations in order for anxiety to reduce. This is not a power struggle with you as the parent, and treating it as such is a grave mistake. It is an attempt to reduce anxiety by asserting control, often in respect of the stimuli that are causing the distress, but you are the safe person who gets to see this. School can be the main culprit, as it is a sensory nightmare for a lot of autistic children, and the social communications/understanding challenges are great in secondary, but with masking, that all gets off-loaded at home. The answer is to adapt a child's environment, including school, by seeking reasonable adjustments. Autistic people don't have to be in discomfort all of the time - we need to make social environments accessible to autistic people. If a child's needs, including sensory needs, are being met, distress will reduce.

It takes time. In the meantime the prescription (from my neurodevelopmental Paed and clinical psychology at least) is a) to lower demands, b) build relationships of trust c) have compassion for all involved, d) reinforce positive steps.

Start by leading by example. Don't jump everytime she demands something. Refuse the trip to the shops, refuse the new duvet covers until she starts respecting you/does stuff that needs to be done. She will fail in life if she always gets her way. No one else would do all you do. What happens when she needs to get a job? Move out? She has no life skills as you do everything for her.

I agree that demand avoidance is a manifestation of anxiety but I don't think the answer is to build a world with no demands - it's to have gradual exposure to what makes you anxious.
Anyway hope the SPACE book is helpful.

Agreed. You cannot give in to everything. Resilience also needs to be built. As much as we need to accommodate we also need to build a child that can get by in the world. You cannot sacrifice yourself, what happens when us parents are not around to do the 90 minute round-trip to the 24 hour shop? It's completely unreasonable.

We ended up going privately for DS2 (16 ASD) to get medication, he had tried counselling but it made him worse. It's lifted him out of the worst fog he was in, but he's still got away to go.

I agree about Demand Avoidance and the pattern of making a "demand" they think won't be fulfilled is quite common - because it's a pressure-free way of giving an answer to something and deflecting the "failure" of it back on whomever asked the question.

It's hard around food issues, and I should imagine even more so with teenage girls with the additional worry of other eating disorders creeping in on top of Arfid. But I think you may need to reassess the approach here, as it's creating further issues.

@Irisginger interested in what your advice would be ?

@Irisginger sorry but asking your mum to go and get Maltesers when she knows it’s a 90 minute drive is not demand avoidant it’s unreasonable. Also in my experience dealing with demand avoidance you have to put in a framework of control to push back on some of the demands otherwise the anxiety will never end. The more demands are met the more out of control and anxious the child becomes. It becomes a Vicious cycle. This is my experience and it worked for me.

Can you please explain what you mean.

@MrsOnslow - controlling behaviour is the CLASSIC expression of demand avoidance, which is usually rooted in anxiety or trauma.

@StressedSuzie just wanted to say that you sound like a lovely mum. She is very lucky to have you. Look after yourself. ❤️

@CasadeCoca agree but this behaviour does not sound demand avoidant. It sounds controlling and unreasonable. I know that there is a fine balance but sometimes it is necessary to push back on some demands to break the cycle. @StressedSuzie what worked for me re meals was getting my son to make the menu for the week on the understanding that we only had a certain budget. We have takeaway once a week only because that’s all we can afford. I had to make everything exactly as he liked which was using packet sauces and stuff - I guess cos it’s always the same. He also insisted on eating separately which was fine. In my head I was thinking - reasonable adjustments not Queen of Sheba demands. Teenagers are unreasonable at the best of times even when they are NT. Honestly dont give her everything she would like because you’ll end up very ill yourself and broke. *speaks from personal experience 😢

DS psychiatrist’s sessions are via Zoom (mainly for meds prescription )

i can send his details if you want

good luck x

If her daughter has demand avoidant features to her autism the professional advice will be to lower demands.

I totally agree with you Buster. Suzie I really feel like you need to push back on your daughter’s demands. She’s Autistic I know but she must be able to see what is a reasonable demand.

Neurotypical people expect to remain in their sensory comfort zone most of the time. Why should that be any different for autistic people?

*experienced

The problem with CBT in general and with autistic people in particular is that it is very easily experiences as personally invalidating (which is a harm) and requires someone to think of part of themselves (how they think) as 'the problem' that needs changing. Lots of autistic people are traumatised by their experiences, including extreme sensory discomfort, and requiring people to see their distress at this discomfort as the thing that needs to change, rather than the sensory environment being adapted, ends up just being another sort of conversion therapy.