Helping my mother

Hi everyone,

my mother has just been diagnosed with autism at the age of 62. She is really not coping with her diagnosis. She’s very emotional about it and says she doesn’t know how to deal with it and can’t put into words how I can help her. 

Does anyone have and advice on how to help her move on with her life. I feel useless at the moment. 

Parents
  • Does she generally respond to major events this way? Not being able to put in to words how you are feeling (alexithymia) is common for autistic people. I tend to have delayed response to traumatic events, seem fine and people think I'm strong, then as my brain processes it I feel the emotional impact. 

    She's probably going over her life, reassessing through this new lense, trying to make sense of it all. She probably also has a lot of trauma and burnout from trying to survive for so long as an undiagnosed autistic in a neurotypical society. You didn't say what lead her to getting diagnosed - has she been misdiagnosed in the past, had an episode of burnout/shutdown, a mental health crisis, or a realisation? Was she prepared for diagnosis or has it come as a shock to her? 

    Like bees said nothing has actually changed, she's still the person she's always been, but maybe her perception of herself has changed, or she's scared of how people perceive her now. Some things I felt as I started openly identifying as an autistic person that may give you some insight in to how she's feeling: vulnerable, that people in my past maybe knew something was strange about me that I hadn't realised about myself, angry about all the things I had struggled with and had been told I didn't struggle with those things I was just being emotionally unstable or weak, broken, not knowing how to proceed in my life, feeling that I had wasted a lot of my life, immense calm from absolutely knowing this is what I am (probably what's known as acceptance?), excited to live more authentically, overwhelmed, much more aware of my sensory issues and feeling more sensory overwhelm because of feeling aware. 

    There are several resources that may help. Here of course, if she wants to join us she'd be most welcome. Squarepeg is a podcast and online community for women and non-binary people on the spectrum, and has a lot of interviews with later diagnosed people. Some autistic women writers - Temple Grandin, Sarah Hendrickx, Katherine May, Laura James, Robyn Steward, Rudy Simone, Sara Gibbs. Robyn Steward is also co host of 1800 Seconds on Autism podcast available on BBC Sounds. 

    You're not useless. It is difficult and overwhelming. When my son was diagnosed autistic I was petrified of doing the wrong thing and felt like I had to learn everything about autism, read medical research, find the best solutions, and a lot of the time he just needed me to be his mum and have fun with him. Just being with someone is good enough a lot of the time, showing you are willing to be in the presence of discomfort or sadness. If your mum is up to it maybe go for a walk, do something you know she used to enjoy. If she's not up to going out just spend some time sitting with her. Maybe offer practical help if she is struggling to cope and feeling overwhelmed. We often don't need help to feel better, we need to permission to feel what we feel until we no longer feel it, and time to process.

Reply
  • Does she generally respond to major events this way? Not being able to put in to words how you are feeling (alexithymia) is common for autistic people. I tend to have delayed response to traumatic events, seem fine and people think I'm strong, then as my brain processes it I feel the emotional impact. 

    She's probably going over her life, reassessing through this new lense, trying to make sense of it all. She probably also has a lot of trauma and burnout from trying to survive for so long as an undiagnosed autistic in a neurotypical society. You didn't say what lead her to getting diagnosed - has she been misdiagnosed in the past, had an episode of burnout/shutdown, a mental health crisis, or a realisation? Was she prepared for diagnosis or has it come as a shock to her? 

    Like bees said nothing has actually changed, she's still the person she's always been, but maybe her perception of herself has changed, or she's scared of how people perceive her now. Some things I felt as I started openly identifying as an autistic person that may give you some insight in to how she's feeling: vulnerable, that people in my past maybe knew something was strange about me that I hadn't realised about myself, angry about all the things I had struggled with and had been told I didn't struggle with those things I was just being emotionally unstable or weak, broken, not knowing how to proceed in my life, feeling that I had wasted a lot of my life, immense calm from absolutely knowing this is what I am (probably what's known as acceptance?), excited to live more authentically, overwhelmed, much more aware of my sensory issues and feeling more sensory overwhelm because of feeling aware. 

    There are several resources that may help. Here of course, if she wants to join us she'd be most welcome. Squarepeg is a podcast and online community for women and non-binary people on the spectrum, and has a lot of interviews with later diagnosed people. Some autistic women writers - Temple Grandin, Sarah Hendrickx, Katherine May, Laura James, Robyn Steward, Rudy Simone, Sara Gibbs. Robyn Steward is also co host of 1800 Seconds on Autism podcast available on BBC Sounds. 

    You're not useless. It is difficult and overwhelming. When my son was diagnosed autistic I was petrified of doing the wrong thing and felt like I had to learn everything about autism, read medical research, find the best solutions, and a lot of the time he just needed me to be his mum and have fun with him. Just being with someone is good enough a lot of the time, showing you are willing to be in the presence of discomfort or sadness. If your mum is up to it maybe go for a walk, do something you know she used to enjoy. If she's not up to going out just spend some time sitting with her. Maybe offer practical help if she is struggling to cope and feeling overwhelmed. We often don't need help to feel better, we need to permission to feel what we feel until we no longer feel it, and time to process.

Children
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