I an new. I hope it is ok to launch right in with questions as don’t know where to turn.
I am in difficult care situation with my elderly mother and that is bringing me into contact with social services and care industry. Long story, not good.
At same time I had autism confirmed early this year. Late in life. Female. 50s. I have known for a long time. Waited years for process locally. At the time I did not really register and no follow up locally. I find comfort from advice online and yellow lady bugs postings in Melbourne and my own reading.
Last week I got sick of social workers and their emails starting “ thank you for your very detailed and long email” and I fired back that I was autistic and we believed in detail.
At same time I was referred to mental health home treatment team for care burn out. When I have also told them I have had dismissive comments
- it is just a label
- maybe you can be helped to learn how to communicate better with social workers- not vice versa
- maybe you need to find an open mind- that one really hurt.
They also keep “ sign-posting” me to do things as though they don’t know what burn out and overwhelm mean. Anyone who uses word signposting causes me to switch off. It is a trope for “ don’t expect me to do anything myself”.
The care system is brutal. I already feel gaslighted by almost everyone I meet and yet all external factors are ignored and it all becomes my fault. I feel disclosing my autism has just led to more of that “ it’s her”. I feel I violated myself without any understanding. My father was autistic and he died last year. I miss being with someone like me. Just that resonance of being with him. I have also been forced into a short dbt course I find truly unhelpful in trauma and autism. It tells me to radically accept high level trauma and even verbal abuse from social workers. My mother is now on SW 25 as they change and fail so much.
I’m not sure what I am asking, but I regret disclosing the diagnosis to a brutal service failing a family and it seems to then force even more masking and withdrawal because of the responses. I am not ashamed of autism or who I am. I am though terrified at lack of understanding even in mental health teams. The come back has been to see autism as a deficiency or deficit to be altered or managed. I have been shocked really. I still have to negotiate care for my mother. I feel my mind is being constantly scrambled by other people to extent I want to isolate even more.
I guess I don’t know how to protect and make a diagnosis helpful when local services fail or are non-existent. Thanks for any thoughts. I just feel vulnerable and separate and scared.
