adult daughter refusing diagnosis

We have an adult daughter, aged 44. We are in our late seventies. She lives with us and we are, in effect, her carers. She has for many years absolutely refused to see any doctors.

She has had serious mental problems since age 17, when she became anorexic and self-harmed. She left school. Though she obtained a BA and an MA, she had to work at home with much support from us. She continues to have no  circle of friends, avoids people, and does not engage socially. She seems very poor at grasping other people's (often kind) intentions, and constantly complains of 'bullying'. In her early thirties she was 'sectioned' twice. One psychiatrists diagnose her as BPD and as schizophrenic. A third, diagnosed numerous comorbid conditions, but did not include autism. She was at one stage given cognitive therapy for OCD: the effects were positive but did not last. 

However, with the relatively recent advances in the understanding of autism/Asperer's and the adoption of the ASD concept, my wife and I have researched the issue as extensively as we were able. Our guess -- with no medical qualifications, Im afraid -- is that she actually suffers from autism, quite likely comorbid with schizophrenia. This obviously is not a professional diagnosis.

We've learned to gice her space and endure frequent anger outbursts without challenging or arguing with her. She leads an isolated life, though she drives a car and can ssometims do shopping. The rare moments of happy interaction with us are few and far between.

We are worried about her future, and our ability cope. I know we are probably not alone in this. Any help or advice available? What might be a way forward?

Paul [Removed by Moderator due to breaking rule number 2 of the Online Community]

Parents
  • Her past experiences of being sectioned will likely be feeding her reluctance to see any doctors. That is understandable and ultimately it is her decision if she wants to seek an autism diagnosis or not.

    Sadly autistic people born female have for many years not been recognised and many have instead been misdiagnosed with conditions such as BPD / bipolar / schizophrenia. Treatments they are given prove ineffective if they do not actually have those conditions. I have encountered so many of those stories on here and elsewhere. Finally receiving an autism diagnosis can prove transformative.

    Has she been at all willing to discuss a potential autism diagnosis with you? If she is willing to discuss it without triggering a meltdown then perhaps you could point her in the direction of this forum. This is a safe space for a potentially autistic adult to chat with others who have been through the diagnostic process later in life. There is a wealth of experience on here and she will be able to ask any questions she may have.

    Many who are diagnosed later in life experience a sense of relief at finally being able to understand who they are and why life has been such a struggle. That was certainly my experience when I was diagnosed a few years ago aged 50. At my diagnostic assessment I felt understood and validated for the first time in my life. It was a positive experience and vastly different to the kinds of negative encounters with the medical profession and mental health services I was used to. An autism diagnosis is not something to fear.

    It is natural that you worry about how your daughter will cope in the future. However it is only fair to warn you that support for autistic adults is almost non existent. If she does receive a diagnosis she may or may not be entitled to a few post diagnostic support sessions, depending on what area you are in. Otherwise pretty much nothing aside from places like this. The kind of isolated life your daughter leads now is not dissimilar to my own.

Reply
  • Her past experiences of being sectioned will likely be feeding her reluctance to see any doctors. That is understandable and ultimately it is her decision if she wants to seek an autism diagnosis or not.

    Sadly autistic people born female have for many years not been recognised and many have instead been misdiagnosed with conditions such as BPD / bipolar / schizophrenia. Treatments they are given prove ineffective if they do not actually have those conditions. I have encountered so many of those stories on here and elsewhere. Finally receiving an autism diagnosis can prove transformative.

    Has she been at all willing to discuss a potential autism diagnosis with you? If she is willing to discuss it without triggering a meltdown then perhaps you could point her in the direction of this forum. This is a safe space for a potentially autistic adult to chat with others who have been through the diagnostic process later in life. There is a wealth of experience on here and she will be able to ask any questions she may have.

    Many who are diagnosed later in life experience a sense of relief at finally being able to understand who they are and why life has been such a struggle. That was certainly my experience when I was diagnosed a few years ago aged 50. At my diagnostic assessment I felt understood and validated for the first time in my life. It was a positive experience and vastly different to the kinds of negative encounters with the medical profession and mental health services I was used to. An autism diagnosis is not something to fear.

    It is natural that you worry about how your daughter will cope in the future. However it is only fair to warn you that support for autistic adults is almost non existent. If she does receive a diagnosis she may or may not be entitled to a few post diagnostic support sessions, depending on what area you are in. Otherwise pretty much nothing aside from places like this. The kind of isolated life your daughter leads now is not dissimilar to my own.

Children
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