to feel so overwhelmed with ASD teenage daughter?

[StressedSuzie]

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? 😢

Can you please explain what you mean.

@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.

@Irisginger interested in what your advice would be ?

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.

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.

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.

I know it’s right to encourage her to get used to some demands etc but she just completely and adamantly refuses.

It doesn’t matter how you ask her or try and get her to see things as her choice - if she doesn’t want to do it then she isn’t doing it 😢

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.

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.

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.

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.

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.

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.

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

Yeah right - have you actually had to deal with a severely depressed autistic teenager?

Your approach might work for some, but there is no 'one size fits all'.

My ASD DD is 15 and we have been through a very tough time too. I changed her school and her OCD and anxiety went through the roof but it was the right decision as her new school is so much more accommodating and nurturing. She didn’t want to change schools but I knew it was for her own good in the long run and luckily she is not as wilful as your DD sounds. She couldn’t engage with counselling either but her new school has set her up with speech and language therapy and I have hired a lovely SEN tutor, both of which have helped build her confidence as they seem to know how to engage with her better. Her new school have given her one to one drumming lessons, which she has shown a talent for, which is also great. She has been on medication (sertraline) for five months and I think it has helped a bit, but it’s hard to know. It hasn’t been a miracle cure. We waited 18 months on the CAHMS waiting list to get it. If you have access to counselling yourself, I found that useful. I was finding her daily tearful phone calls from school so distressing for example as I didn’t know how to help or fix the issues when I was stuck at work, miles away. My therapist told me she probably didn’t expect me to fix anything, she just wanted me to acknowledge she was finding things hard and feel heard. Just a small thing like this was so helpful in taking that pressure off me in these moments a bit. I sympathise so much as I know all you want to do is give your child a happy childhood and it does feel impossible. I tell myself one day at a time and to enjoy the occasional good times. Best of luck.

Thank you. I was starting to feel like a terrible person for saying that.

@leafybrew my DS has two medications that increase his chances of not dying. One is anti epileptic and one is a stimulant for his ADHD. He has to take both. We don't want him going into a coma but we also don't want him impulsively running out in front of a car.
You can bet your socks he has to take them. Luckily he will take them if we don't let him have screen time till he does. Actually, now they are a habit he just takes them anyway with no bother. But we've had to use bribery. When he was 6 it was jam or chocolate.

I think you'd also like the SPACE book... See upthread.

Friends dd found therapy that wasn't therapy helpful. She did art class (therapy) and lego therapy with an autism girls group. Friend had to bribe her to go - try 4 sessions and I will get you/do x y and z.
She didn't have to talk just do the activity that was infront of her, no pressure, clear instructions on what to do. She kept on going. I think she said it was 6 months before she said a word but she slowly relaxed and it helped

I'm on milder on of noise sensory. I found foam earplugs and sleep phones work well though did take me 2 years to adapt. I find audio book with known story stops blank speeding mind
Asd dc pref his amazon echo dot to play story to him while he sleeps.
All comprises as we couldn't have the quiet house as brothers are classic adhders

I'm the mother of a 10 year old autistic and ADHD daughter. It's rough and I feel you. My daughter also finds demands difficult at times. Especially when she's dysregulated.
I have to take the demand away and give options. So in the situation you're describing I would probably say something like
"You're really struggling. I know that you feel that if everyone does the same as you that will help, but that isn't possible or realistic. These are the options you can choose from.

1. We will sit and choose a therapist together, and the three of us will work together so that we can find the best way to help you.

1. We will sit and choose a therapist together, and before/at the appointment you will write down your thoughts and I will read them to the therapist so that we can work together to help you."

Two clear options may remove the demand, and help DD agree to something because by giving her options you're not actually telling her what to do. She still has choice.

I find it so hard to know what is ASD, what is anxiety and what is being a 13 year old!
It's probably a bit of all.

I work with teenagers with unclear diagnosis and what they almost all have in common is a mixture of not being understood by their parents and using this as a mean to manipulate to get their parents to feel helpless and letting them get their way.

What I was taught is that it's usually the parent that needs support and therapy more than the teenager.

Parents need to gain -or regain- confidence in their parenting. Ultimately, it is them that should be in control of what happens. At the same time, they need to be open to understanding their child's needs.

This involves Trust and Communication. There are a number books that provide guidance. Trust needs to be established on both sides and for this communication needs to be fluid and vice versa.

Each need to be able to talk about their needs and be listened to. Compromises then need to be found.

For instance, mum want teenager to do the washing up right after dinner. Teenager says that dinner is stressful for them so need to relax listening to music afterwards. They agree that teenager does washing up listening to music without the need to engage with parent.

The worse thing you can do is dramatising her situation and acting like you constantly need to make allowance to make up for how hard she has it. You need to acknowledge her difficulties without feeling sorry for her and compensating. Compromises go both ways and at the end, YOU are the parent and should always have the upper say.

I would love to read it but I'm not in the UK so can't order it. 😕