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Advice needed: NHS treatment for young adult with Autistic burnout

MikeB

Hi all

My family needs advice from someone who has experience navigating the NHS mental health treatment system where autism is involved.

My 27 year old daughter has been sectioned and in a mental hospital for approximately 3 months. Initially she was diagnosed as suffering from  depression and anxiety but this has been changed to autistic burnout after she was tested for and diagnosed as being autistic. Her hospital seems to have little idea of how she needs to be treated and cared for in terms of her autism despite the intervention of the local NHS Autism Service. Our daughter  was a teacher until earlier this year when she could no longer cope with the stress caused by a lifetime of masking her autism. Her psychiatrist and staff at the hospital seem to feel that she can't be that unwell because she can express herself clearly. At the moment they are trying to railroad her out of the hospital despite her ongoing suicidal thoughts. She has made several attempts at suicide before boing sectioned and while in the hospital. 

We are extremely worried that she will be released before she is ready to cope.

Can anyone offer advice or tell us who can help?

Thank you

Parents

  • 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.

Reply

  • 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.

Children
  • in reply to MikeB

    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.