I didn't tell my daughter about her diagnosis

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
  • 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. 

    A Mac user will also feel like the programmers of a PC are deliberately making their computers difficult and belligerent. The same in reverse. A programme created for one type of operating system doesn't work in a different operating system because it has a completely different set of rules. This is an analogy to the different brain functions between autistic and neurotypical humans. 

    As a parent, my job is to help my son function in society. Offer support until he says he no longer needs it. Offer to help until he simply does it on his own. My job is to help him have agency. To know his weaknesses and strengths and to learn to work with his strengths and around his weaknesses. We can't be everything. 

    When we discovered he had dyslexia, it explained a lot. And the changes we could now make accordingly, helped make his life more fluid. His father used to punish him by taking his video games away, but I noticed they were actually helping him learn to read, so I had to intervene when I could. My son would judge himself harshly, and until we discovered this, he felt 'stupid' and suicidal. So on top of not knowing he had a brain that is much better suited for kinetic situations, it simply appeared as though he was good for 'nothing'. That emotional weight on top of the biological difference meant he didn't reach his full potential. Now he's in his 20s and has knowledge of something to work around rather than blindly against. He has agency - a type of personal power. He can make better decisions about a direction for a career. Individuals like him, undiagnosed waste away on the fringe of society simply for not ever knowing their unique way of being. 

    I am going to assume you weren't taught properly how to mother. I didn't have the best mother but I had an incredible grandmother, so I'm fortunate. The only thing you can do at this point is understand that sadly you've willingly contributed to hurtful and unnecessary consequences that she now has to pay for. You will unfortunately need to step back, assume responsibility and afford your daughter time to be angry. While you may have felt like a victim, the consequences have created such ruin for her that she has to clean up, and from her point of view it was ALL avoidable. I'm really sorry to say. I can give you some advice, but the first port of call is understanding she is the victim :( 

    What can you do?

    1. There is a book called The Mom Factor. It's written by well known Christian psychologists in the States: Cloud/Townsend. I've never read anything like it, and it's Really Good. 

    2. If I were you, I would immediately join some kind of addict support group that can help you learn how to be responsible toward and with and for those who mean the most to you. So you don't completely lose them and so you can learn how to repair. Even AA will be able to teach you things which your mother should have taught you. The problem is on such a grand scale now and in order to repair your relationship, it is going to take an incredible commitment to learn how to help her Pay the Consequences she shouldn't have ever had to pay for. 

    3. I would assume it will be years before she would want to have a relationship with you. In the meantime, I would start a savings account for her and put a little in every week. A small action of paying penitence, which may help you cope. The longer it takes, the more money you will have saved up for her. It does not fix the situation. It is an act of repentance that will feel like helping her and connecting to her while she has disconnected from you and no longer trusts your help. And will be some thing of value to offer her far in the future. 

    4. I would spend time at the library in the self-help section and find out what I was supposed to know. It sounds to me like after all these years, you still might not quite understand how amazing an autistic brain can be. I can't say I'd ever call someone I value and love 'difficult' or 'belligerent' if I knew they had trouble understanding social nuances. 

    5. However you must, accept that you have destroyed her ability to trust and rely on you. She feels betrayed (no, this is an act of betrayal - I'm sorry to say). And the only thing you can do is hunt down a mentor or guru or someone or something that can teach you how to become a trustworthy and reliable human. That's it. I feel so sad for both of you. A mother is the one person in this whole world who can offer us unconditional understanding and it sounds like you don't understand her. This can be mended, but you may have to allow yourself to feel the pain of this - go through it if you want to reach the other side and eventually have a new (and hopefully better) relationship with her some day. 

    Autism can be amazing when there is proper education curated for our type of brains. We're not susceptible to advertising. We don't fear lack of inclusion, we don't have the same fears, so we appear out-of-the-box. We can see seemingly invisible systems and functions and logic that most neurotypical individuals cannot. Had I been properly diagnosed I could've had an amazing career in biology or genetics or mycology or physics. But I spent 15 years re-learning everything and should be financially well beyond where I am, but what a waste! I do not doubt she feels as impacted. 

    We learn differently, process information differently, see the world differently, not bad or good - but sometimes much better than the average Neruotypical human, and with the capacity to be much more kind, much more human. Autism is only difficult until you learn to understand the world the same way we do. And all that takes is a basic function that has been lost in modern society, an ethical code that invites curiosity and understanding. One of acceptance rather than being forced to conform. 

  • Your analogy of the PC / MAC difference is brilliant.

    Please could you say a little more about how the autistic brain “ learns differently, processes information differently, sees the world differently”?

    your own insights and any resources you think useful to better understand these things and accommodate for them would be much appreciated 

  • These insights come from years of research, but I'll try to highlight the important bits!

    Neuroimaging has helped us recognise 2 key factors. 1. The hyper-connexions the autistic brain is making compared to a NT brain. 2. How autistic individuals can use different areas of their brain to process information and not exactly 'bypass' but just not use the Lobe involved with language/emotion to the same capacity or in the same manner.

    Lacan suggested the Autistic individual wasn't developing the same defence mechanisms as the NT. And according to various theories in Philosophy, Phenomenology and Psychoanalysis, this would be due to "Language issues" - again taking us to that temporal lobe, but there are a system of regions which process language. Defence mechanisms like Sublimation, Freud suggested are useful for maturing into civilisation. Jung had discovered in his theory on Archetypes that a certain Type didn't take to Oedipalisation, a 'code' embedded into neurotics through language, which helps civilised beings operate through a sort of debt and guilt in society. I would suggest that the NT feeling-of-unfairness 'button' is pressed when they notice an autist not conforming to this and have warped that inability to understand this code as a "lack of empathy". Hopefully we're finally getting beyond this silliness. Oedipalisation is responsible for Perversion and Psychotic extreme NT behaviours according to Deleuze and Guattari. (Though I'm certain Laing would agree).

    Back to neuroimaging! Here are a few papers that I've found interesting: 

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4874898/

    https://pubmed.ncbi.nlm.nih.gov/21256856/ 

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8297849/#pone.0255039.ref010 

    https://www.sciencedirect.com/science/article/pii/S2213158215001679 

    If I'm reasoning through concepts and ideas or what's been said with my imagination in the Occipital lobe (though, obviously we're using so many different regions all at once), I might not have the language immediately for what I'm envisioning, and that could possibly equate to using all kinds of regions to reach a conclusion in physics or art or a system of human interaction without language. If I've just operated this way since birth due to genetic wiring, let's say, then perhaps the lobe that forms meaning from evolved linguistics is either just not being used as often or perhaps it's something else. I don't really have answers as to why, but I'm personally more interested in How.

    Second, if I'm already making an overwhelming amount of connexions, perhaps my ability to learn and perceive is heightened. 

    Both of these elements could be addressed properly by the education system for these neurootypes. A focus on more wholistic engagement (note: just because I think in pictures doesn't mean I need to learn in them) within a reduced sensory environment so children are not in survival mode and incapable of growth. 

    I would also suggest that helping young autistic kids understand Systems: a system of engaging socially through the system of ethics and a round about understanding of the system of morals. Or explaining a system of thought like basic logic, the system of perception or mindfulness, even the system of helping them recognise how their intaking and disseminating information could be crucial to compound their ability to excel at whatever they're good at and also navigate society with more useful tools.

    All these things here can be googled - or let me know if you'd like additional links! There's obviously a lot more, but I would start with these points. Monotropism is a good one, https://thepsychologist.bps.org.uk/volume-32/august-2019/me-and-monotropism-unified-theory-autism Francesca Happé is enjoyable to listen to, read up on, I also like reading Jorn Bettin: https://autcollab.org/2020/04/30/autism-the-cultural-immune-system-of-human-societies/?fbclid=IwAR37xumHkRga0hADICA80wxaWycn7_Kr9Oc6uZhcs2zJ0QzamXOI4qwU2bQ 

Reply
  • These insights come from years of research, but I'll try to highlight the important bits!

    Neuroimaging has helped us recognise 2 key factors. 1. The hyper-connexions the autistic brain is making compared to a NT brain. 2. How autistic individuals can use different areas of their brain to process information and not exactly 'bypass' but just not use the Lobe involved with language/emotion to the same capacity or in the same manner.

    Lacan suggested the Autistic individual wasn't developing the same defence mechanisms as the NT. And according to various theories in Philosophy, Phenomenology and Psychoanalysis, this would be due to "Language issues" - again taking us to that temporal lobe, but there are a system of regions which process language. Defence mechanisms like Sublimation, Freud suggested are useful for maturing into civilisation. Jung had discovered in his theory on Archetypes that a certain Type didn't take to Oedipalisation, a 'code' embedded into neurotics through language, which helps civilised beings operate through a sort of debt and guilt in society. I would suggest that the NT feeling-of-unfairness 'button' is pressed when they notice an autist not conforming to this and have warped that inability to understand this code as a "lack of empathy". Hopefully we're finally getting beyond this silliness. Oedipalisation is responsible for Perversion and Psychotic extreme NT behaviours according to Deleuze and Guattari. (Though I'm certain Laing would agree).

    Back to neuroimaging! Here are a few papers that I've found interesting: 

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4874898/

    https://pubmed.ncbi.nlm.nih.gov/21256856/ 

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8297849/#pone.0255039.ref010 

    https://www.sciencedirect.com/science/article/pii/S2213158215001679 

    If I'm reasoning through concepts and ideas or what's been said with my imagination in the Occipital lobe (though, obviously we're using so many different regions all at once), I might not have the language immediately for what I'm envisioning, and that could possibly equate to using all kinds of regions to reach a conclusion in physics or art or a system of human interaction without language. If I've just operated this way since birth due to genetic wiring, let's say, then perhaps the lobe that forms meaning from evolved linguistics is either just not being used as often or perhaps it's something else. I don't really have answers as to why, but I'm personally more interested in How.

    Second, if I'm already making an overwhelming amount of connexions, perhaps my ability to learn and perceive is heightened. 

    Both of these elements could be addressed properly by the education system for these neurootypes. A focus on more wholistic engagement (note: just because I think in pictures doesn't mean I need to learn in them) within a reduced sensory environment so children are not in survival mode and incapable of growth. 

    I would also suggest that helping young autistic kids understand Systems: a system of engaging socially through the system of ethics and a round about understanding of the system of morals. Or explaining a system of thought like basic logic, the system of perception or mindfulness, even the system of helping them recognise how their intaking and disseminating information could be crucial to compound their ability to excel at whatever they're good at and also navigate society with more useful tools.

    All these things here can be googled - or let me know if you'd like additional links! There's obviously a lot more, but I would start with these points. Monotropism is a good one, https://thepsychologist.bps.org.uk/volume-32/august-2019/me-and-monotropism-unified-theory-autism Francesca Happé is enjoyable to listen to, read up on, I also like reading Jorn Bettin: https://autcollab.org/2020/04/30/autism-the-cultural-immune-system-of-human-societies/?fbclid=IwAR37xumHkRga0hADICA80wxaWycn7_Kr9Oc6uZhcs2zJ0QzamXOI4qwU2bQ 

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