I didn't tell my daughter about her diagnosis

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.  

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.

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.  

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. 

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.  

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 

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 

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.

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.  

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.

Thank you for your lengthy and hard hitting reply, there is a lot to take in there and I will continue to read it over and over and take from it what I can.  I am prepared to put in the work required and realise the consequences of my failing her.    

Thank you for your kind reply which I will continue to read over as I think it is a helpful insight.  I hope my daughter will feel comfortable venting her frustrations with me.  It certainly is hard to know what is the right thing to do all the time but now I can see more clearly where I went wrong.  

I do want to add, it takes a lot of bravery to be honest about these things.

It will take a great deal of emotional and psychological work to learn how to not just mend and repair, but heal the consequences, and the cost and make her life much better than it could've been. 

NAS75374 said:

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. 

I think your daughter just needs a time and place to vent out her frustrations, and you need to be there to listen to her, because you're her parent, and your child needs your understanding. I mean sometimes people need to vent out their frustrations before they feel better, and then after they feel better then they can move on, amends can be made, and so on. But if you ever feel like you're in danger of violence, then keep your distance. Even not talking for a long time would be better than tolerating any kind of violence.

I mean, I can only imagine how much your daughter could have struggled growing up, because she never had validation for what she was going through because she never had a name for it. And then after so many years, she finds out from somebody else that she was diagnosed with autism, and she didn't even find out from the people closest to her. It's just unsettling to know that somebody else knows something about you, that you don't even know about yourself. 

There are many families that struggle for different reasons, so don't be too hard on yourself. It's hard to know what's the right thing to do all the time. And regardless of her diagnosis, your daughter is still herself. She still has her own place, her own business, and her independence. 

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.  

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?