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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

  • The thing is with the diagnosis even though you weren’t offered any help or support for her it is still something that she would be able to use as knowledge about herself and an understanding of herself. A lot adult diagnosed autistic and ADHD people struggle with anxiety and depression because they struggle through life and the explanation from diagnosis (for some maybe not all) can lift the cloud and they know why they struggle rather than just an idiot who effs everything up all the time. She may also be grieving the childhood she could’ve had if she’d known and could understand herself better or get support at school. You mention your husband having breakdowns, autism tends to run in families, has he been assessed as well?

  • in reply to GuybrushThreepwood

    I don't think my husband is autistic, obviously, with the type of breakdown he had he was under psychiatric care for a long time and it was never raised.  I think my daughter's behaviour did exacerbate his problem and as a whole it impacted on me as well.  I appreciate your reply and can see how she may be grieving and how it would help her understand herself.  I appear to have put my own needs first and just wish she would let me talk to her.but she doesn't allow any close or intimate talking and I have to respect that.  

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  • in reply to GuybrushThreepwood

    I don't think my husband is autistic, obviously, with the type of breakdown he had he was under psychiatric care for a long time and it was never raised.  I think my daughter's behaviour did exacerbate his problem and as a whole it impacted on me as well.  I appreciate your reply and can see how she may be grieving and how it would help her understand herself.  I appear to have put my own needs first and just wish she would let me talk to her.but she doesn't allow any close or intimate talking and I have to respect that.  

Children
  • in reply to NAS75374

    Please bear in mind, though, that most psychiatrists and CMHTs have only minimal if any training on autism.  Our son was with them for nearly 4 years before autism was even mentioned.

  • in reply to NAS75374

    Why is this obvious? Autistic people are misdiagnosed with mental illnesses all the time. Personality disorders and schizophrenia are quite common misdiagnoses for example. 

    My mum mocks me for being autistic so at least you don't sound like that kind of parent. It hurts when parents hide important things about your identity from you. My mum lied about who my real dad was and passed off someone else as my dad for a long time, and it wasn't even a man who liked me and enjoyed parenting me. Different withheld information but these things all add up to our understanding of who we are in the world.

    Hopefully your daughter will come around to realising that there was no malice in you not telling her. Maybe write her a letter. Choose your words wisely though.