Published on 12, July, 2020
I have a 25 year old sibling who was diagnosed a few years ago as having ASD. They are deaf and still live at home with my mum. They have some serious mental health issues including confusion around their gender which we are desperately trying to get help for. They have refused to see any medical professionals for so long and finally agreed to get some counselling or similar. However, due to the pandemic the service would only do video calls which weren't accessible for my sibling. They finally got a face to face appointment with mental health services this week but when they went along, the professional didn't turn up because they assumed it was a video call. Every time one of these set backs happen it is so difficult to persuade them to continue with seeking help.
They have self harmed and have suicidal thoughts. They are violent, rude and so so horrible. The insults and things they say to my Mum are horrendous. She feels bullied in her own home but cannot do anything because there is nowhere else to go and no help available. My sibling is intelligent and funny and great company when they are in the right mood but the entire family has to walk on eggshells as not to trigger them. They will explode over the smallest thing, destroy things, punch and kick holes in the wall, push my mum (they are physically a lot bigger than her), make threats, cry, scream, shout etc. We've been dealing with it for so long and I am so worried we are at breaking point.
I am so worried about both my sibling and my mum. I worry for her mental health as she is so isolated and trapped in this situation where she is being bullied and unhappy all the time, but of course she loves my sibling unconditionally and wants to be there for them. I worry for my sibling who is so confused and unhappy about a number of things. I desperately want both of them to be happy and to help them get any support we can. My mum will not go anywhere because she is terrified she will come home and find my sibling dead. This is having a huge effect on her mental health and mine as we are living in a state of constant fear.
We have no money to look for private help. They live in a council house. We are reliant on the local health services which seem to be so slow and I am worried it will be too late before anything gets done. What can we do? How can she get some respite? Is there any charities that will help? Is there such a thing as assisted living for those who are high functioning but have mental health issues and aren't independent.
My sibling doesn't go out and socialise. They are constantly anxious. When my mum leaves the house she is bombarded with text messages often abusive. She gets carers allowance for looking after them but still needs to go out and work the hours she can because the money isn't enough for them to live on. She is run ragged tending to their demands and I just don't know how to help her and my sibling to get into a better place. Please let us know if there is any help available as none of us can cope and continue like this.
Goodness this sounds so difficult! I’m so sorry.
Life must be worth living.
What routines do they keep? Do they have library books, an indoor garden? Do they knit? Have you suggested painting all the walls shades of blue (paint can be expensive). But one must have something to do, projects, things to make and become. 1st Wednesday every month at an art gallery, every other Tuesday a walk down a canal. crafting Christmas ornaments with glue, recycled cardboard and glitter. Sunday make cake.
Sometimes it can be more difficult not to do something planned (when autistic) so having a monthly schedule posted can be useful, but I don’t know your sibling.
What sort life would they like to live if there were no limits. Subtract the material items and How much of this can be lived now? These are important to know. Life can be found in pursuit of a thing, in relationships in some kind of connexion. But it is incredibly difficult with out any passion, routine or desire.
Thank you for sharing this with the community. I'm so sorry to hear about everything you're going through with your sibling, it must be incredibly difficult for yourself and your mum.
You may like to have a look at the mental health section of our website which has useful links to information and advice about a range of mental health issues: https://www.autism.org.uk/advice-and-guidance/topics/mental-health
You can find advice and information on how to go about seeking help, including links to other resources and details of helplines and listening support services, here: https://www.autism.org.uk/advice-and-guidance/topics/mental-health/seeking-help.
You might also like to take a look at The Challenging Behaviour Foundation website for further information and advice:
https://www.challengingbehaviour.org.uk. They also have an information and support service which you can contact by phone or email – details can be found here: https://www.challengingbehaviour.org.uk/for-family-carers/family-support-service/
To find out about the support available for autistic adults and parents and carers, how to request an assessment or find out about funding for social care please visit:
I hope this is useful,