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Help…..I’m a neurotypical daughter of a neurodivergent mum

Chinchin

New Member
I’m going to try not to give too much backstory to this, since it’s somewhat long. I’ve known since I was a child that there was something very different about my mum. She’s now in her mid-60s and has a plethora of health issues, both mental and physical. She doesn’t speak to most of her family, and of the many friends she’s made over the years she’s only managed to keep one, who doesn’t live close by. Her neighbours don’t like her. She does speak to my dad (though they’re separated) but the relationship is not a good one. I’m virtually the only person she has left, and I’m so scared because I can feel our relationship circling the drain too.

After our most recent spat it occurred to me (not for the first time) that the key thing going wrong is communication. She says one thing but in such a blunt way I interpret it as aggressive. I say something and she takes it too literally. We both go away confused and hurt, even though all we both want to do is spend time together and enjoy each other’s company.

This time I went away and started googling. I somehow ended up on Jaime A. Heidle’s blog – the articulate autistic. It was honestly mind blowing for me. The different behaviours he writes about, virtually all of them I see in some capacity in my mum. The reality of it brought me to tears. I have been trying to read around the subject since then, and I’m convinced this is what she’s been experiencing. The reason she thinks the world is against her. The reason she doesn’t understand why someone took something the wrong way and I have to explain it to her. So many things just clicked into place and made sense.

I know that she’ll never agree to see a professional about this. Not that this is too relevant since it looks as though there are very few resources for adult diagnosis in the region I’m in (south of the UK.) But she’s so distrusting of doctors since she’s had a few very traumatic incidents with surgeries (pretty sure there’s some PTSD mixed up in there too), and she’s of the generation where mental health and spectrum disorders were considered something of a farse.

I don’t know if things could be made worse by me taking it as fact that she is neurodivergent but I’m so convinced at this point I don’t know if it makes a huge difference. By the sounds of it, because she’s a woman I’m not sure she’d be diagnosed anyway.

There seems to be a tonne of resources for parents with autistic kids, but virtually nothing for kids of autistic parents! So what I’m asking for, in essence, is any resources which people have found truly helpful and resonate with the situation I’m in. I’m happy to take the time to try and learn, but there’s so much research on autism that it’s difficult to know where to start. I just want to know how to behave around her so that we don't end up falling out, or communication breaks down.

I would like to try and show her a snippet of what autism in adult women looks like, from the perspective of women (particularly older-late diagnosis) to see if this is just as revolutionary for her as it was for me. She is not a good reader (her eyes are a bit bad) but I’ve got her on my audible account, so any really good books on there would be great.

Please anything that is relevant or helpful I would be so grateful of. I’m worried that I’m running out of time with her to fix this.
 
It sounds like your mother has difficulty understanding and processing her emotions which results in misunderstandings that cause her to perceive the world more negatively. The best treatment for this is self-help books about childhood emotional neglect.

While autism is considered to be a different condition than childhood emotional neglect, autistic people have the same emotional problems as people who suffered from emotional neglect and can therefore benefit from the same treatment.
 
Hello and welcome! : -)

The first book I read regarding Asperger Syndrome was Aspergirls, by Rudy Simone. It was as if the author had written the book about me, personally. Not everything fit, however, most was spot-on. As far as, specifically, women/ girls on the spectrum, this is the only book I have read.

I've read some quite informative literature by Tony Attwood, as well. Sarah Hendrickx has very informative/insightful and useful videos on you tube, and she is autistic, herself.

I wish you and your Mum, all the best!
 
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I wish I could say something to help you, but if it gives you any comfort, I’m so sorry you and your mum are suffering this, just remember there’s always hope and things will change for the better when you least expect it.

may God remove this evil disease from the world, and give you all relief, I know exactly the pain you’re going through, all the best
 
Welcome!

In considering that autism screening and diagnoses (or referrals for diagnosis) didn't really become commonplace in schools until the 2000s and that most of the books on the market were published in the 2010s, it's quite natural that the majority of books available are on working with and raising kids on the spectrum, with some memoirs from adults mixed in. To be honest, I'd probably expect to see books about supporting autistic elders to become more common perhaps in several decades.

The only book I've seen thus far is


and as you can see from my review


it's a start, but we're far from having a comprehensive reference guide.

Some women's memoirs of those adult diagnosed which I've liked include, but are not limited to



By the way - you're not alone in your journey in supporting someone aging on the spectrum, but unfortunately we're still a relatively small cohort, and even in studies, we're not considered at all. I recall one survey where the identification options were:

1. Autistic individual
2. Autistic individual and parent of an autistic child
3. Other caregiver for autistic persons
4. Medical / Psychological professional
5. Other service provider

and I was a bit dismayed that my situation (autistic individual who is also supporting another autistic individual, who is not their child) was not reflected, even after I asked about it.
 
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I wish I could say something to help you, but if it gives you any comfort, I’m so sorry you and your mum are suffering this, just remember there’s always hope and things will change for the better when you least expect it.

may God remove this evil disease from the world, and give you all relief, I know exactly the pain you’re going through, all the best
Sorry, I'm not sure I like the reference "evil disease": for someone trying to accept himself/herself and work on their weaknesses, such reference might be "discouraging".
 
....may God remove this evil disease....

I must admit, I also found this quite offensive.

@Chinchin I don't have any real answers for you, but there are some things you could consider.

Part of your worry seems to be that you fear your mother is lonely. People made this mistake with me all my life, often forcing company on me when it was very unwelcome. I actually don't get lonely. I go for many weeks at a time without ever speaking to a human and I'm happy with that.

Neurotypical people can't understand this, and I know it breaks their hearts looking at me, but my loneliness only exists in their minds, not mine. It is their own fears that they are trying to assuage, not mine. This might be a good topic to try and discuss with your mother.

As for taking things literally, that's a common autistic trait. I even find a lot of humour in some of the words people use, this usually results with me being called insensitive because I saw something funny in a serious conversation.
 
Hi and welcome. Try Jessica Kingsley publishers catalogue for texts by women with Autism and clinicians. Sarah Hendrickx has written one there. The Rudy Simone book is accessible and good, and there are a number of others. Women who have worked with Aspergers issues for years even, may not have recognised they too may be on the spectrum.

I think a significant reason for differences is the different social conditioning of boys and girls, that teaches girls to mask more and muddle through quietly, or else to see themselves as wrong rather than the world being confusing. Boys act out, girls internalise is a common result, though of course not a universal truth, some buck the trend.

Feel free to ask more questions here.
 
Hi all,
Thank you for all your kind replies. I've spent more time researching and wow it has been an eye-opening experience @VictorR I've had a little look through some of your book reviews and there's certainly some promising stuff there! Thanks @Thinx and @Loren for mentioning Sarah Hendrickx; that sent me down a whole rabbithole, and I think I'm going to get her book which is available on Audible for my mum to listen to. I know I've posted on an American forum but it has later occurred to me that the British autistic experience might be quite different from the American one! So I'm hoping there will be plenty she can relate to there.
Thanks again
:)
 
Welcome. I would like to get your perspective as an NT child of a possible ND parent. How was it growing up? What were the positives about your childhood experience? What were the negatives? Do you feel short changed? How do you feel about your mom? I ask these things because I have NT children and I wonder what they think of their experience with an autistic parent as they have.
 
Welcome. I would like to get your perspective as an NT child of a possible ND parent. How was it growing up? What were the positives about your childhood experience? What were the negatives? Do you feel short changed? How do you feel about your mom? I ask these things because I have NT children and I wonder what they think of their experience with an autistic parent as they have.
Hi Magna,
I'm glad you asked because it's actually made me think about it. Just as background, I think it will make a difference if an autistic parent knows they're autistic or not, because then at least there might be some further reading their children can do to understand the differences, and so communication might be easier. And I do think it depends how the autism presents, for my mum it's definitely the "masked" female version (she tries so so hard to socialise right, but it fails every time and she just can't understand why! Frustrating. She burns herself out all the time trying to put up this front.) It's interesting as well because although I'm pretty sure I'm NT I have definitely picked up certain traits from her which are not. Brings into question the whole nature nurture thing.

Growing up was a little confusing. There were certainly several moments I can think of where it was pretty blatant that my mother was different from other mothers.

Positive things: She was always a good mother, I think, she put me first with a lot of things and really did put the effort in to make sure that I was healthy. Interestingly, she also went to great lengths to ensure that I didn't make certain huge social faux pas, such as forgetting to put deodorant on, I think this is because (from the way she describes it) my mothers mother also suffered from the condition, and didn't do this, which meant my mum had a difficult school life. But the best thing about her as a mum is that she's always been so honest, and she's taught me honesty too.

Negative points: Unfortunately there are a lot, I think the main ones come in the health issues associated with the stress of trying to look "normal." Her anxiety is huge, and so is her sense of self-hatred. I suppose she taught me patience to an extent, but it's difficult to stay patient when you don't recognise that the other person is virtually speaking a different language. There has been so much mis-communication, and recently it has been really bad, which is what led me here.

The situation for me is pretty tumulus at the minute on how I feel about her. You have to bear in mind I have only just realised that this is what's been going on (this morning felt like Christmas waking up, I'm going to meet her today and present my evidence) and I'm still definitely processing all this information. I definitely did resent her, I feel ashamed thinking about it, but really I did believe that a lot of her behaviours were just her being awkward and so blatantly I thought it must be deliberate. Now I just hope that I can finally understand her and our conversations wont spiral out of control! I have a lot of love for her and I've always cared about having a good relationship with her, which is why I've gone to so much effort to uncover this.

I don't know whether any of that will play into your personal situation, but I hope that it can be of some help. All relationships can be difficult at times but for people with autism it certainly seems much harder. I hope your situation isn't an isolating one. Can I ask as well, do you find that you have to try quite hard with your kids? I guess it depends how old they are, but do you do a lot of "masking" for them?
 
Hi Magna,
I'm glad you asked because it's actually made me think about it. Just as background, I think it will make a difference if an autistic parent knows they're autistic or not, because then at least there might be some further reading their children can do to understand the differences, and so communication might be easier. And I do think it depends how the autism presents, for my mum it's definitely the "masked" female version (she tries so so hard to socialise right, but it fails every time and she just can't understand why! Frustrating. She burns herself out all the time trying to put up this front.) It's interesting as well because although I'm pretty sure I'm NT I have definitely picked up certain traits from her which are not. Brings into question the whole nature nurture thing.

Growing up was a little confusing. There were certainly several moments I can think of where it was pretty blatant that my mother was different from other mothers.

Positive things: She was always a good mother, I think, she put me first with a lot of things and really did put the effort in to make sure that I was healthy. Interestingly, she also went to great lengths to ensure that I didn't make certain huge social faux pas, such as forgetting to put deodorant on, I think this is because (from the way she describes it) my mothers mother also suffered from the condition, and didn't do this, which meant my mum had a difficult school life. But the best thing about her as a mum is that she's always been so honest, and she's taught me honesty too.

Negative points: Unfortunately there are a lot, I think the main ones come in the health issues associated with the stress of trying to look "normal." Her anxiety is huge, and so is her sense of self-hatred. I suppose she taught me patience to an extent, but it's difficult to stay patient when you don't recognise that the other person is virtually speaking a different language. There has been so much mis-communication, and recently it has been really bad, which is what led me here.

The situation for me is pretty tumulus at the minute on how I feel about her. You have to bear in mind I have only just realised that this is what's been going on (this morning felt like Christmas waking up, I'm going to meet her today and present my evidence) and I'm still definitely processing all this information. I definitely did resent her, I feel ashamed thinking about it, but really I did believe that a lot of her behaviours were just her being awkward and so blatantly I thought it must be deliberate. Now I just hope that I can finally understand her and our conversations wont spiral out of control! I have a lot of love for her and I've always cared about having a good relationship with her, which is why I've gone to so much effort to uncover this.

I don't know whether any of that will play into your personal situation, but I hope that it can be of some help. All relationships can be difficult at times but for people with autism it certainly seems much harder. I hope your situation isn't an isolating one. Can I ask as well, do you find that you have to try quite hard with your kids? I guess it depends how old they are, but do you do a lot of "masking" for them?
Thank you for your thoughtful reply, @Chinchin I appreciate it very much.

Do I "try quite hard" with my kids? In thinking about parenting I've always been very careful by trying to avoid the idea that because I have Aspergers, parenting is so much harder than it is for other parents, because parenting is hard, period. However, it's undeniable that autistic parents face unique challenges in parenting. Mainly for me it's relating and connecting as much as I can with them; I have big challenges in those areas. There is always the strong pull I have to want to be "in my own world". I have to be conscious that I live with other people and they need interaction and care. I do therefore place an emphasis on being aware of that and acting on it as much as I can (e.g. playing games with my kids, asking them how their days are going, asking them about things that interest them, etc). It's always stressful on a certain level because being around other people, even my family that I live with, love and care about is inherently stressful. I'm most relaxed and calm when I'm by myself. When I'm alone and someone enters the same room, even if it's someone closest to me and that I'm most comfortable with, it's changed; there's an "energy" that is foreign to me and something that I continually have to "figure out" in how best to interact with that person.

I've also had the fear that I don't love my kids the same way NT parents appear to love their children, but I try to dismiss that notion for a number of reasons.

Do I mask around them? That's a good question. My first reaction is, "definitely not" because my home is my safe space, my sanctuary, my refuge from "the world" where I should be able to be myself. However your question makes me think and in doing so, I will say that I'm continually conscious when I'm around others including my own family about how it's best to interact. I often (not always!) pre-screen/filter what I say and either don't say certain things that I'd like to or say them differently than I'd like to in the interest of trying to make my communication more palatable. As such, I think that's a form of masking. I also think life itself is beautifully absurd and as such I'm rarely serious; I'm a king of "dad jokes" and with all of that I do "rein in" what I want to say and mete it out. If I don't do that I have a tendency to tease and annoy as a form of interaction and I'm aware enough to know that other people don't like that. I think I do that because again, interacting with others is generally uncomfortable for me. I think keeping that kind of behavior in check is a form of masking as well.

I have another question for you: What kinds of things would you like your mom to say to you or that you'd like to hear from her? Think of it as maybe having a dream and in that dream you and she talk together and she says things to you in that dream about your relationship, her parenting, your childhood, etc that you never heard from her and wish you had and hearing them from her in your dream gives you a feeling of healing, etc?
 
Thank you for your thoughtful reply, @Chinchin I appreciate it very much.

Do I "try quite hard" with my kids? In thinking about parenting I've always been very careful by trying to avoid the idea that because I have Aspergers, parenting is so much harder than it is for other parents, because parenting is hard, period. However, it's undeniable that autistic parents face unique challenges in parenting. Mainly for me it's relating and connecting as much as I can with them; I have big challenges in those areas. There is always the strong pull I have to want to be "in my own world". I have to be conscious that I live with other people and they need interaction and care. I do therefore place an emphasis on being aware of that and acting on it as much as I can (e.g. playing games with my kids, asking them how their days are going, asking them about things that interest them, etc). It's always stressful on a certain level because being around other people, even my family that I live with, love and care about is inherently stressful. I'm most relaxed and calm when I'm by myself. When I'm alone and someone enters the same room, even if it's someone closest to me and that I'm most comfortable with, it's changed; there's an "energy" that is foreign to me and something that I continually have to "figure out" in how best to interact with that person.

I've also had the fear that I don't love my kids the same way NT parents appear to love their children, but I try to dismiss that notion for a number of reasons.

Do I mask around them? That's a good question. My first reaction is, "definitely not" because my home is my safe space, my sanctuary, my refuge from "the world" where I should be able to be myself. However your question makes me think and in doing so, I will say that I'm continually conscious when I'm around others including my own family about how it's best to interact. I often (not always!) pre-screen/filter what I say and either don't say certain things that I'd like to or say them differently than I'd like to in the interest of trying to make my communication more palatable. As such, I think that's a form of masking. I also think life itself is beautifully absurd and as such I'm rarely serious; I'm a king of "dad jokes" and with all of that I do "rein in" what I want to say and mete it out. If I don't do that I have a tendency to tease and annoy as a form of interaction and I'm aware enough to know that other people don't like that. I think I do that because again, interacting with others is generally uncomfortable for me. I think keeping that kind of behavior in check is a form of masking as well.

I have another question for you: What kinds of things would you like your mom to say to you or that you'd like to hear from her? Think of it as maybe having a dream and in that dream you and she talk together and she says things to you in that dream about your relationship, her parenting, your childhood, etc that you never heard from her and wish you had and hearing them from her in your dream gives you a feeling of healing, etc?
Sorry it's taken me a little while to reply, again I had to think about this a bit! It sounds to me like you do end up masking at least a little bit, but I suppose that's something parents do have to do anyway to protect their children from the rest of the world! In my mind you certainly must face much larger challenges than NT parents though (I mean, teenagers almost always think their parents are cringey regardless) If anything, from what I've seen autistic parents love their kids as much, if not even more than many others (that's based off my case study of 1, however it makes sense to me that family relationships can be more intense the way friendships often are more intense for autistic people.)

As for what I'd like to hear her say, I can't think of anything additional that she hasn't already said that I would want to hear. I know she loves me, she's self-aware enough to have apologised for being embarrassing before, just in general she's been very honest. I think what I might've liked growing up was sometimes a bit more space, because kids do need lots of space. In some ways I think giving people a bit more space can sometimes bring them closer, because then they have to come and seek out your company when they want it. I hope that makes sense.

Their brains are still developing, and I've heard before that empathy is one of the things to develop last, so if you can, try to stay patient with them when they become frustrated. I think it is useful to make sure they actually understand what makes you different, and maybe any online articles that you think are particularly relevant might be good to share with them if you feel they aren't understanding what's going on.
 
This time I went away and started googling. I somehow ended up on Jaime A. Heidle’s blog – the articulate autistic. It was honestly mind blowing for me. The different behaviours he writes about, virtually all of them I see in some capacity in my mum. The reality of it brought me to tears. I have been trying to read around the subject since then, and I’m convinced this is what she’s been experiencing. The reason she thinks the world is against her. The reason she doesn’t understand why someone took something the wrong way and I have to explain it to her. So many things just clicked into place and made sense.

I know that she’ll never agree to see a professional about this. Not that this is too relevant since it looks as though there are very few resources for adult diagnosis in the region I’m in (south of the UK.) But she’s so distrusting of doctors since she’s had a few very traumatic incidents with surgeries (pretty sure there’s some PTSD mixed up in there too), and she’s of the generation where mental health and spectrum disorders were considered something of a farse.

I don’t know if things could be made worse by me taking it as fact that she is neurodivergent but I’m so convinced at this point I don’t know if it makes a huge difference. By the sounds of it, because she’s a woman I’m not sure she’d be diagnosed anyway.

There seems to be a tonne of resources for parents with autistic kids, but virtually nothing for kids of autistic parents! So what I’m asking for, in essence, is any resources which people have found truly helpful and resonate with the situation I’m in. I’m happy to take the time to try and learn, but there’s so much research on autism that it’s difficult to know where to start. I just want to know how to behave around her so that we don't end up falling out, or communication breaks down.

I would like to try and show her a snippet of what autism in adult women looks like, from the perspective of women (particularly older-late diagnosis) to see if this is just as revolutionary for her as it was for me. She is not a good reader (her eyes are a bit bad) but I’ve got her on my audible account, so any really good books on there would be great.

Please anything that is relevant or helpful I would be so grateful of. I’m worried that I’m running out of time with her to fix this.
From my viewpoint, you are already there. Of course, more information and learning is always a plus. I don't think she needs to be presented with the thought she might be autistic.

I am autistic and my wife is NT. We have worked together on the same issues you described. My advice is to simply be understanding. Know that when she says something offensive that it is unlikely that she means it that way. What's important is to listen to the words, and try, as much as possible, to ignore her tone, expressions and mannerisms. This is a major problem with me. As an autistic, I am blind to my tone, expressions and mannerisms. On top of that, those items are are not connected to my emotional state or my intent in communication. I have learned that tone, expressions and mannerisms are a major part of NT communication, which causes an almost perpetual miscommunications. My wife has learned this and has learned to ignore them and focus only on my words. An early test / exercise was for me to write down what I wanted to say instead of verbally saying it. That worked great, except it was hard to carry on a conversation that way. With a lot of practice my wife has learned to ignore my tone and expressions and body language. That seems to be very hard to do, but it is working great for us.
 

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