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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

  • Hmm.  I've been mad at my mom because she was so in denial and I could have had a much different childhood had she not been.  She never knew I was autistic but she knew something was different with me.  She knew part of my brain didn't develop while I was still inside her (Dandy Walker malformation) and outside of physical therapy, she didn't pursue that issue.  I didn't find out about DWM until I was 17 and my PCP told me it was found on the CT.  I can't resolve any of these feelings because she has been gone for 7 years, but it still angers me and makes me sad.  She was a wonderful mother, but things would have gone easier for me and my brother if she acknowledged we weren't "normal."  My brother and I also suffer from ADHD and I know school would have been easier if she had taken us to be evaluated and treated.  My family doesn't treat mental health and mental illness like serious issues.  Everyone has "nerve" problems in the family, and that's it.  You accept it and move on (very unhealthy).  Now, I would love to have her support and let her know about my diagnoses.  She was still convinced I could drive since I can operate a foot pedal and keyboard at the same time.  I think your daughter will come back to you, even if it's to vent and get her feelings out.  I really wish I could tell my mom the reason she had "difficult" kids, and it wasn't because we didn't love her.  

Reply

  • Hmm.  I've been mad at my mom because she was so in denial and I could have had a much different childhood had she not been.  She never knew I was autistic but she knew something was different with me.  She knew part of my brain didn't develop while I was still inside her (Dandy Walker malformation) and outside of physical therapy, she didn't pursue that issue.  I didn't find out about DWM until I was 17 and my PCP told me it was found on the CT.  I can't resolve any of these feelings because she has been gone for 7 years, but it still angers me and makes me sad.  She was a wonderful mother, but things would have gone easier for me and my brother if she acknowledged we weren't "normal."  My brother and I also suffer from ADHD and I know school would have been easier if she had taken us to be evaluated and treated.  My family doesn't treat mental health and mental illness like serious issues.  Everyone has "nerve" problems in the family, and that's it.  You accept it and move on (very unhealthy).  Now, I would love to have her support and let her know about my diagnoses.  She was still convinced I could drive since I can operate a foot pedal and keyboard at the same time.  I think your daughter will come back to you, even if it's to vent and get her feelings out.  I really wish I could tell my mom the reason she had "difficult" kids, and it wasn't because we didn't love her.  

Children
  • in reply to amandariley

    I am so sorry for the late reply, thank you for sharing your experience, everyone who has replied has helped me in some way and I appreciate that.  I am happy that my daughter and I are talking much more frankly and opening up to each other and although I can't stop beating myself up at the moment I am glad it is not too late for me to make amends.