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I didn't tell my daughter about her diagnosis

NAS75374

If my memory serves me correctly I was first told my adult daughter was probably autistic when she was 7, this was made by clinicians who did not see her.  We went to CAMHS when she was about 10 and this diagnosis was confirmed by a child psychiatrist but after that I believe we were left a bit high and dry with no support or suggestions about how we progressed.  My husband had a mental breakdown when my daughter was about 8 and I think he may have taken some of the focus away from her, as you can imagine I felt very much like piggy in the middle.  When my daughter was about 14 we sought help with her eating disorder but the counsellor we saw started helping her with issues she had at school and never progressed to the eating issues which have got progressively worse with a very restricted diet.  I feel really ashamed that I never told my daughter about her diagnosis, in some ways it seemed like a label but I have always been a little bit afraid of her and that the fact that if she kicked off it sent my husband into a deeper depression.  I don't think I was in denial but for whatever reason, it never felt the right time.  We have never had a close relationship but I have been supportive as much as I can and she has her own home and business now and grown-up responsibilities.  

Fast forward to the pandemic and she asked me why she was invited for her covid vaccination earlier than her peers, I had no idea.  A week ago she was invited for a review at our GP surgery and when she asked why the receptionist said it was because of her autism.  Naturally, she was straight on the phone to me to ask what I knew and I told her all I remembered, we both cried and I felt wracked with guilt that I never said anything previously. I couldn't have felt worse really but I understand how awful this must be for her to hear it like that without any preparation.  Her anger is now directed at me, I feel she is trying to make me as upset as she can, she has always been difficult and belligerent but I really want to try and make amends if possible and do the best by her even if it is late.  I really have never known how to cope with this and today I feel at rock bottom.  Any advice or suggestions would be welcome and although I accept responsibility for failing please go gently on me.  

Parents
  • NAS75374 said:
    she has always been difficult and belligerent

    Have a think about that phrase. You've withheld a part of who she is, she's had to struggle without that knowledge all her life. Please don't think I'm having a go at you. Nothing any of us can possibly say will change what has been done, and it's certainly not my place to judge someone I don't know. 

    But I would suggest, that rather than say she has been difficult and belligerent,  you consider how much she has achieved despite not fully understanding who she is. The way she has carved her own path without any of the tools that could have helped her to understand why she thinks differently to others and therefore struggles to fit in, or manage situations that are simple for others. If you had to do the same, do you not think that perhaps, you might also come across as difficult and belligerent? She needs time to process this information,  it's certainly a lot to take in. Be kind to your daughter and yourself.  If she chooses to remain upset with you, that is her choice. Just be there if and when she chooses to reach out.

Reply
  • NAS75374 said:
    she has always been difficult and belligerent

    Have a think about that phrase. You've withheld a part of who she is, she's had to struggle without that knowledge all her life. Please don't think I'm having a go at you. Nothing any of us can possibly say will change what has been done, and it's certainly not my place to judge someone I don't know. 

    But I would suggest, that rather than say she has been difficult and belligerent,  you consider how much she has achieved despite not fully understanding who she is. The way she has carved her own path without any of the tools that could have helped her to understand why she thinks differently to others and therefore struggles to fit in, or manage situations that are simple for others. If you had to do the same, do you not think that perhaps, you might also come across as difficult and belligerent? She needs time to process this information,  it's certainly a lot to take in. Be kind to your daughter and yourself.  If she chooses to remain upset with you, that is her choice. Just be there if and when she chooses to reach out.

Children
  • in reply to Loz

    Thank you, I find your reply extremely helpful, it was a poor choice of words to say difficult and belligerent, this has become such a big learning curve for me.  We have just been texting which I think she finds her preferred method of communication and I think we have a basis on which to work.