Mother of newly diagnosed adult

Hi,

My adult daughter recently had a diagnosis of Autism.  She lives across the country and I'm here to investigate how best I can support her and her partner.

I'm also investigating my own feelings around it, and the guilt I feel for not knowing.

That's me for now, hope everyone is as well as you are able.

Parents
  • Hello there, 

    it is so heartwarming to read a post like this. I am an adult diagnosed 6 months ago, I also live a long way from my family and I have decided not to tell any of them because I think there will be discussions behind my back and a lot of denial etc. 

    You might not realise just how utterly wonderful it is that you write this question and mention your own feelings. 

    I don't know if you mean practical help or emotional/ personal support. If I had a supportive family member I would probably suggest:

    • ask her if she wants to chat about it, she might not, thats ok. For me I would just want to weave my autism into the background of my daily life and not have it as a talking point / headline. She might want to chat online or use skype. I use skype and usually without the camera, but sometimes just whatsapp
    • ask her about disclosure to other family members, let her feel in control
    • be as balanced as possible but not dismissive of how your daughter feels. So, if your daughter is sounding negative or talking about autism negatively, that is real for her and the difficulties can be dealt with compassionately just like neurotypical people. But there can be positives such as attention to detail and ability to hyperfocus.
    • remember your daughter is the same as ever and the diagnosis is just a new lens to see everything through, and you can reassure her of that.
    • post diagnosis, a lot of us go through a very weird stage of reflection, there are several posts about that - you can try the hastag search to find them. 
    • your daughter may have been masking, you can also read people's posts about the stress caused by masking our autism consciously or unconsciously. 
    • I highly recommend listening to Sarah Hendrickx on youtube, she is autistic and also a mother and an expert on autism. She talks warmly about the whole subject and especially about women and girls. She has also worked as a comedian in the past , so her talks are not depressing at all! 

    Apologies if this is not what you were after. I was just shooting from the hip there as I've been visit one of my "unaware" family members today and had to go off and cry for a while after. So this is whats on the top of my mind.  Worst case you can ignore my comments and someone else will come along with something better :-)

    Best case, you can use something or pick up information from other posts. 

Reply
  • Hello there, 

    it is so heartwarming to read a post like this. I am an adult diagnosed 6 months ago, I also live a long way from my family and I have decided not to tell any of them because I think there will be discussions behind my back and a lot of denial etc. 

    You might not realise just how utterly wonderful it is that you write this question and mention your own feelings. 

    I don't know if you mean practical help or emotional/ personal support. If I had a supportive family member I would probably suggest:

    • ask her if she wants to chat about it, she might not, thats ok. For me I would just want to weave my autism into the background of my daily life and not have it as a talking point / headline. She might want to chat online or use skype. I use skype and usually without the camera, but sometimes just whatsapp
    • ask her about disclosure to other family members, let her feel in control
    • be as balanced as possible but not dismissive of how your daughter feels. So, if your daughter is sounding negative or talking about autism negatively, that is real for her and the difficulties can be dealt with compassionately just like neurotypical people. But there can be positives such as attention to detail and ability to hyperfocus.
    • remember your daughter is the same as ever and the diagnosis is just a new lens to see everything through, and you can reassure her of that.
    • post diagnosis, a lot of us go through a very weird stage of reflection, there are several posts about that - you can try the hastag search to find them. 
    • your daughter may have been masking, you can also read people's posts about the stress caused by masking our autism consciously or unconsciously. 
    • I highly recommend listening to Sarah Hendrickx on youtube, she is autistic and also a mother and an expert on autism. She talks warmly about the whole subject and especially about women and girls. She has also worked as a comedian in the past , so her talks are not depressing at all! 

    Apologies if this is not what you were after. I was just shooting from the hip there as I've been visit one of my "unaware" family members today and had to go off and cry for a while after. So this is whats on the top of my mind.  Worst case you can ignore my comments and someone else will come along with something better :-)

    Best case, you can use something or pick up information from other posts. 

Children
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