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Autistic Inpatient

AnnieApple20

Hi there,

I am the parent to an autistic young person who has been an inpatient for several years.

To cut a very long story short they are stuck in the system. 

They have long periods of being settled and risk free , however because of the restricted and unpredictable environment they have moments of meltdown, this causes them to harm themselves. 

I do believe their behaviours are due to the non structured environment without any meaningful activities for them. They are currently struggling with executive dysfunction and are sleeping mostly throughout the day. I have asked for support for them from the hospital, however it is falling on deaf ears.  

My questions are: 

Is anyone else going through this?

What support or advice can anyone offer?

Is there any support to help get my young person back home?

I understand my role as 'nearest relative' however I feel I need to pick the right time to appeal their section. 

Can anyone offer any words of wisdom/advice?

Many thanks

Annie x

  • I wonder what strategy the organisation has for future care?

    Having been involved with health care for some time I've seen systems that put people in a "box" of categorisation and then no longer pay interest in them.

    Tricky to "take on" the system as an insider I found - even harder as an outsider.

    Maybe if you could form an affiliation with someone "inside" the system who is brave and influential enough to champion the cause of your child?

    Maybe someone from an external body?  

    You and your child have my heartfelt best wishes  

  • Dear Annie,

    Welcome to the online community- it is great to have you here! I am Olivia, one of the online community moderators. I am really sorry to hear about your child's experience of being inpatient, it must be a very challenging time for them and the rest of your family. 

    In terms of support/advice I can offer, I would suggest raising some of your concerns with the hospital if you haven't already. It can sometimes be really helpful to speak about what other support they may be able to offer. It may also be worth taking a look at our NAS guidance on: Autistic people and inpatient mental health hospitals 

    It makes sense to want to pick the right time to appeal the section. When it comes up to the time to prepare for possible discharge it may be helpful to speak with hospital staff and community teams about what may be offered for S117 aftercare. This is free support that is available post discharge to help keep someone well. I have included Explaining your rights to section 117 aftercare | Mind for you to take a look at. 

    Thank you for sharing your experience and I hope some of this information is helpful.

    Warmest wishes,

    Olivia Mod

  • Good morning from America, AnnieApple20.

    I don’t have much in terms of advice, so my main reason to comment is to bump this to the top of the forum in case there is someone with better words of wisdom. I’m not very familiar with the UK medical system, but I do have first hand experience with suicidal ideation. *TW* ahead

    The best way to support your young person at home is to make a plan. Meltdowns will happen and self harm might be the consequence of it. So what are we going to do to stop it before it gets too bad? For me, two things we have done is rid the house of anything that can be used for self harm (in my case, it was extension cords) and create a system I have to go through when I feel SI coming on. I have to call my wife, if I can’t my friend, if I can’t 988 (our suicide hotline) if I can’t then I need to check myself into a hospital. Since we started this process I have gotten to the 988 point, but never farther. Having a predictable plan set in place like that and one that they promise to uphold as best as they can could be a big help in preventing it from getting too far.