Advice needed: NHS treatment for young adult with Autistic burnout

This must be incredibly hard for all of you - my heart really does go out to you and your daughter. They have a duty of care to your daughter and if she feels unsafe to leave then surely they have to give her enough support to keep her safe? This is the bare minimum required surely - to keep a patient safe from harm - including self harm? I only wish I had some good advice to offer - but I just want to send you a message of support and solidarity, and to say that however dark things currently are people do get through even the most appalling times imaginable- and go on to learn to enjoy life again. I had a period in my life after a life threatening illness and consequent breakdown when I thought I could never enjoy life again - it was an unbearably traumatic and bleak time (which lasted for nearly two years) and I lost all hope of ever feeling ok ever again. But I managed to get through it - and I’ve had many happy times since. I’m not stronger for it it’s true - but I’ve learnt a lot and there have been many silver linings to those incredibly black and overwhelmingly clouds. There’s always hope - no matter how horrendous it feels at the moment. It can take a long long time though - so it’s vital to not expect too much too soon. You’re daughter’s autism diagnosis could be the key to her finding the right strategies to rebuild her life. It’s a good start to recovery to have a better understanding of what she really needs, and why she has found many of aspects of her life so debilitating. I hope you get the help you all need from the people caring for your daughter - and that things start to improve soon. 

First thank you to all of your for your thoughts and for taking the time to reply.

Our daughter doesn't trust herself yet in terms of trying to kill herself so being released from hospital would be the worst possible thing to happen now. We are going to try to speak with the team at the hospital to see how we draw the balance between keeping her in a protected setting even though the noise, disruption and unpredictability are not what she needs as an autistic person. One thing we are sure of is that if she is released anytime soon it wouldn't be long before she had to return.

We are also concerned about our ability to keep her safe if she was to stay with us as we both work an couldn't watch her 24 hours a day.

I am so sorry - how upsetting for you and your daughter. It’s at least a positive that the fact that  she is autistic has been identified - that’s such an important and valuable step towards helping her get well again. Can I ask: does she want to leave hospital? Or is it that she is wanting to stay and inpatient and she is not feeling ready to leave? Could she stay with you when she comes out - so that she is not left alone? Do you feel able to care for her in the weeks after she leaves hospital - or are you worried that you might struggle to cope? What support do the hospital offer for when she does eventually leave hospital? 
If she has burnout then I imagine she needs a lot of peace with no pressure on her so that she can gently regain strength at her own pace. What does she say she needs most? 
This must be so hard for you - seeing our children - no matter how old they are - suffer is so deeply upsetting. Hang on in there - in time your daughter will get better - autistic burnout is something we can recover from if we have the space and time to really take care of ourselves. In time things will get much easier and this difficult time in your lives will just be a memory. 

Being at home with family is best place. Reducing distress and stimuli and creating a calm enviroment.

I think one of the things you could do from your end (as I can see how much you are trying your very best by coming here asking questions), is doing what you are doing - research and advocate for her. The treatment for depression is trying to get people to engage with things, where in burn out, you just need quiet enviroment, without bright lights and time to rest and heal. Find out if there is anything you are allowed to bring to make her feel good about the space she's in -you'll have to check with staff on the rules.  Inpatient wards are difficult as they tend to be the oppositie of what autistics need, so you can advocate for her, point out what she needs and get them to try incorporate that into her care.  I had a family member in crisis that got admitted, and it was very difficult.  They were vegan too, so even trying to get the right food is a thing -if she's autistic, then have a think about foods she likes and doesn't eat - and make sure the staff know these too. Gentle conversations about her sensory needs can be a good place to start without talking about autism if she doesn't want to engage with talking about that. Sensory needs are real things though that she could relate too.

My family member did make it through their crisis, and was able to return home and eventually back into work too on their terms.  I think you are doing amazingly, Stuarts advice below is brilliant for her point of view, i just wanted to add this stuff too. Look after yourselves!

Hello.

Does she recognise what has happened to her?

This is my opinion based on what I experienced. Some may not apply, everyone is different.

Having a diagnosis is hard, it causes a lot of uncertainty and confusion. Re-framing the past is not easy and takes time. It is hard to find out you are not quite the same when you've tried so hard.

Around that age is when it can get to you. Life is finally too much. It got me although not as bad.

Not knowing what is happening to you is hard.

You can still appear logical and sensible and emotionless as that is the default setting. Your logic might go awry and be based on some misunderstandings, but it can be consistent and coherent.

Emotional processing can be erratic and asynchronous. You can discuss things in a completely detached manner then break down later when everyone has gone.

Not wanting to be seen, or accepting you have a weakness, does not help.

You can lose perspective and previous problems get magnified. You can loop on them endlessly.

The main solutions should be removal of pressure, a calmer, quieter environment without noise or stress where you feel safe, regular routines and being left alone. Only being seen by someone they trust to talk to who is calm, supportive and trained. You mostly want to understand,  not so much be comforted

I expect the environment is not especially calm or reassuring.

I think the key thing is to encourage her to believe it will pass. It will take time but it can get better. She has not failed, people don't think less of her, she still can have a good life, even if it doesn't seem like it at the moment.

Good luck.

Hello MikeB,

I am sorry to hear about your concern. I have looked through our advice pages and found two pages which may help you. The first is about mental health hospitals - please find the link here: 

https://www.autism.org.uk/advice-and-guidance/topics/inpatient-mental-health-hospitals

The second link is focused more on the topic of mental health. Please find the link here:

https://www.autism.org.uk/advice-and-guidance/topics/mental-health

I really hope somehting there helps or someone at he hospital can reassure you.

With best wishes, 

Anna Mod