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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

  • It sounds to me like you tried to give your daughter the most normal life you could, and; from what you've said, you've succeeded in that. She has her own home, business and responsibilities.

    Of course she's going to be pissed off with you, because she'll be retroactively thinking about the situations she was in and attributing them correctly or incorrectly to her autism.

    However, time will probably make things easier for both of you. Your daughter will hopefully come to the logical conclusion that you wanted what was best for her, and that in spite of her autism she's doing pretty well for herself.

    You will have to forgive yourself, my own mother has gone through something similar recently after my formal diagnosis. My rationale is that from her experience of the school system which she saw me go through, she realised that disagnosis or not, resources would be incredibly sparse. This in fact is still true today.

    I imagine that you're probably still holding onto a lot of unresolved issues with regard to your husbands breakdown, and this has reinvogorated a lot of painful memories for you. I suggest that you seek some councelling, but more importantly let your daughter come to you. If you have to suspend contact with her for a while, do so, don't let yourself become the butt of someones anger.

    She'll come around, everyone needs their mum.

  • in reply to RegularLogic

    Thank you for your very kind reply.  You have commented from a different perspective than the other respondents and it has been very helpful to me.  As you can imagine I am pretty new to the world of talking about autism openly and I clearly have a lot to learn so I really appreciate your kindness and more gentle tone.  

    My original question was rather a knee-jerk reaction to the original conversation I had with my daughter but I am relieved I misjudged the situation as she says she is not angry with me and I have to take that at face value.  The letter she has which was given to her by our GP practice (written when she was belatedly discharged from the CAMHS and apologetic in tone for allowing my daughter to fall out of their system) is quite a revelation and although I haven't seen the whole thing it appears to give a lot more information than we have even been given, indeed we were never given anything in writing at any time. I have no idea whether that is a normal procedure but I suspect not.  

    Happily we have opened up a dialogue and I am hoping this will be helpful to both of us.  I know I am perfect but like any mum I genuinely want the best for my kids.  

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  • in reply to RegularLogic

    Thank you for your very kind reply.  You have commented from a different perspective than the other respondents and it has been very helpful to me.  As you can imagine I am pretty new to the world of talking about autism openly and I clearly have a lot to learn so I really appreciate your kindness and more gentle tone.  

    My original question was rather a knee-jerk reaction to the original conversation I had with my daughter but I am relieved I misjudged the situation as she says she is not angry with me and I have to take that at face value.  The letter she has which was given to her by our GP practice (written when she was belatedly discharged from the CAMHS and apologetic in tone for allowing my daughter to fall out of their system) is quite a revelation and although I haven't seen the whole thing it appears to give a lot more information than we have even been given, indeed we were never given anything in writing at any time. I have no idea whether that is a normal procedure but I suspect not.  

    Happily we have opened up a dialogue and I am hoping this will be helpful to both of us.  I know I am perfect but like any mum I genuinely want the best for my kids.  

Children
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