The Hardest Thing

Someone asked me to name the hardest thing about having a parent on the autism spectrum. Speaking only for myself, I guess I’d say it’s the radical imbalance in needs recognition and fulfillment. Everything my mother thinks she needs is red-alert urgent until the need is fulfilled. Anything someone else needs is of no value to her – maybe even stressful for her to consider – so she ignores it. If you try to get her to acknowledge your need, she squirms away from this threatening information and gets mad if you don’t quickly drop it.

We were well-trained as children to meet her needs and not to expect much from her. That dynamic hasn’t changed. Here are two examples of what it’s like to be her child:

Last summer my sister’s husband was badly hurt in an accident. Nine months later, he still can’t put any weight on one leg. He’s had multiple surgeries and excruciatingly slow progress. My mother knows that this is difficult for my sister and her husband. But this understanding has no effect on her demands. One recent morning she knew my sister was at the doctor’s office with her husband but still called her repeatedly. When my sister didn’t answer the phone after several calls, my mother got a staff member at her assisted living facility to call on her behalf. I guess she thought my sister could be tricked into answering. So what was the emergency? She wanted a laxative. Sorry – no, she desperately needed a life-saving laxative. She couldn’t grasp why my sister wouldn’t immediately abandon her husband and rush from the doctor’s appointment to the drug store and then race over to deliver the medicine right that minute.

On my wedding day 18 years ago, my mother insisted I do her laundry. There are zero extenuating circumstances that would make this demand reasonable. She’d been in town for just 3 ½ days and was returning home the next morning. She was physically capable of doing her own laundry and had laundry machines right outside her bedroom door in her condo. I know it seems hard to believe I couldn’t refuse this demand. You’d have to know how she behaves when she thinks she needs something to understand why I gave up and did her damn laundry. I had no trouble saying no to my kids when they were toddlers, but they were not in her league of frantic and escalating persistence. She can make you feel like you are refusing to let her in the house during a blizzard while hungry wolves are biting at her ankles.

Wait. After writing this, I realize I was distracted by the regular frustration of her blindness to our needs. I should have said the hardest thing is feeling that she doesn’t love me. I am just someone who can be called on to meet her needs. When I’m not being useful, she forgets all about me. I have always known that I am her least favorite child, though she came to appreciate me when I became an adult and could be more useful. But my siblings don’t feel loved either. It’s ironic that she has the least relationship now with the child who was her favorite when he was young. He isn’t at all useful to her now, and as a teenager he was quite rebellious, so she dropped him down in favor and rarely talks to him.

I understand that she can’t love me, but not all of me can accept that. I am – I let myself be – caught in this cauldron of feeling angry that she doesn’t care about me and hanging onto the enduring need to accommodate her just in case I finally locate the one thing that will open her heart.

We’ve all read lines like this: Our mothers are the first ones to teach us the true meaning of love. I know that kind of statement is supposed to be a beautiful tribute to motherhood. But not every mother is able to provide the kind of love that nurtures a child’s soul with the conviction that they are lovable and treasured and their needs and happiness are important. I didn’t get that kind of uplifting love from my mother. She couldn’t teach me that meaning of love. And that’s the hardest thing.

 

Copyright 2017 Sarah Meyer Noel

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20 thoughts on “The Hardest Thing

  1. Fleur - The Netherlands

    Dear Sarah, thank you so much for writing down your experiences and feelings. I strongly relate to them and it is helping me. I have only recently realized my father is likely to suffer from ASS/Asperger, althoughbeit with very high intelligence, which masked parts of his incapacity and abnormal functioning. I have been raised by him after my mother died when i was 12. My older brothers left our home out of frustration with my father and due to education elswhere, respectively. I recognize the longing for love and acknowledgement of your needs and feelings by your own mother. There is so much to share, but the details are not that relevant, it is what i am left with that is on my mind…
    Please do not adjust your output because it is said that you are not doing people with autism a favor. That is the point, isn’t it? It is never about you, but always about them. My constant adaptation to my fathers needs has done me no good at all. It has hampered me in a tremendous way.
    This is your blog, and I am grateful that you put it here, as it makes me feel less lonely and acknowledges the patterns in my life are real, are not unique, are not by my own doing. It provides me the validation that i am on to the right path of healing myself by tackling patterns and no longer accepting the status quo, but to challenge it and change myself without hesitation or fear that I am hurting my father. Lots of love, and namaste is most appropriate here 🙂

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  2. L

    Hi Sarah, I’m a lurker and have been reading your blog for a few months. I would love to see more posts. Like Fleur above, you blog has really helped me see I’m not crazy, and that there are others who have received similar parenting to what I got. Please don’t let any critics keep you from detailing your experiences with your mother.
    Your posts create a realistic picture of what it’s like having a parent “on the spectrum”. The one that stands out for me in particular is the selfishness your mother displays. Just like my father – myopic to the point of not realizing anyone around him has needs. And that as you become accustomed to this you take for granted the imbalance in the relationship.
    I believe in one post you noted you never ask your mother for advice – I totally relate. I often have thought about who I would call if I were in a car accident, and I mentally note about everyone I know, and my father is at the end of the list because I don’t even think about him being available, much less interested to help me.
    Your blog is very important because it honestly covers a very touchy subject: Neurodiversity. We hear so many heart warming stories about those on the spectrum and the angst of their parents working to help their child navigate the NT world. Perhaps the parents of the Asperger’s child never conceive that they might have grandchildren who will have to navigate an emotionally bereft relationship with their autistic parent.
    Also, I am able to only read your blog in short bursts because your descriptions are so spot on. I find them extremely disturbing because of how reflective they are of my own childhood. There was always something off, but no one knew what or why.
    Please keep writing.

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  3. Callan

    It’s interesting on love – I wonder if most children get a sense of love from their parents basically ‘for free’. Sure, maybe if they do more, they get more love than that, but they just get some love for free. Even hugs they didn’t have to initiate, the parent just gives them a surprise hug. But the autistic parent – you’re always earning your love. You earn it or it isn’t there. There is no love just for free. I wonder if for the autistic person it’s like they live in a world full of mannequins or wax dolls – they are the only human alive. I presume they avoid running into other autistic people so as to better enable the feeling of being the only human. Plus the fact they don’t need to run into other autistic people and deal with taking what they give since they are supported by the neurotypical. If a number of autistic people were put on a desert island, I presume they would simply go off alone – those that could survive alone would and those that couldn’t, wouldn’t. Hopefully some would actually support others for the sake of community and inter personal care. It’s hard to think some would, because that would involve giving some love for free – and honestly, it feels like it’s binary. It’s not that there are just lower levels of love for free, it’s that you earn it or you get none. And the moment you stop earning it, there is none. Trying to describe different places on the spectrum would imply just lower levels of love for free in some cases, not an absence. And this…just stabs an old wound – a wound which wants to know what is we need to do to be loved as children. Because we didn’t feel it and pretending there’s a spectrum and some autistic people are different – that implies some would love you just for you existing, rather than having to do anything. For those of us who felt no unearned love, that’s treating us as if we are wrong for having felt nothing and deciding the cause of that to autism. The other conclusion, that we are unlovable, is too heartbreaking to consider. But political correctness would insist saying no such thing about autism – which just abuses us, those who had no love just for existing.

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    1. Eliza Gilson

      Sorry Callan you just can’t generalise about autistic people in that way. It’s wrong and offensive.

      The particular phenomenon you’re describing – in an overly universal way – is a particular culture that one would hope is dying. The parent is viewed as the object of respect simply because they are the parent. A societal thing not an autistic thing; autistic mothers are not the only put-upon martyrs. But when this comes up against a particulat autistic psychology – and there is certainly more than one way of being autistic – the autistic parent feels enabled by a society that tells them they deserve their child’s respect regardless of how bad their behaviour. When they sense they haven’t got it, they act out. Society does not put a premium upon children’s feelings and parental self control and so why should they, when self control is harder for them than for most?

      I say “harder” because autistic people can make an effort. What we cannot do is make an effort in every area of our life – including the small things that most people take for granted such as checking our facial expressions don’t look weird, ignoring that repetitive small noise that’s driving us insane – all at once. If we know something’s important, we do it. But the autistic parent in a culture where parents have rights and children should be grateful for having been born has no such impetus not to just let it all hang out.

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      1. sarahmeyernoel Post author

        Eliza,
        I have struggled over what to do with your comment. I don’t want to endorse comments that attack another commenter, and I consider your charge that Callan’s comment is “wrong and offensive” to be both wrong (Callan is as entitled to his/her views and experiences as you are) and offensive (you may feel offended, but that doesn’t make the comment offensive).

        I wish, Eliza, that your first sentence had been something like this: ‘Callan, please be careful not to generalize about people. Those of us with autism are not all the same, and I feel dehumanized and misunderstood by generalizations.” You might also consider offering sympathy for his suffering.

        I find it ironic that you accuse Callan of generalizing and then go on to generalize in your counter-argument about parents with autism. You write “If we know something’s important, we do it.” This may be true of you, but I don’t believe you can provide data that this is true of every – or even many – people with autism. It is not true of my mother.
        I am sure that social expectations affect lots of behavior, but I am not ready to agree with you that the painful shortcomings in my mother’s behavior as a parent would not have occurred if not for a social construct that tells parents they automatically deserve respect. It’s likely a factor, but it doesn’t seem logical to me that this is the driving reason. Nurturing parents in every generation and culture are able to care about and prioritize their children’s needs and make them feel loved and valued.

        I can’t speak for Callan, but it does seem to me that Callan and I are engaged in the same struggle: trying to understand our painful, life-long experiences with a parent who doesn’t demonstrate love for her children through her words, actions and priorities. One factor that is always hard to evaluate is how much that parent’s autism plays a role in behavior that is painful for the child (no matter how old the parent and child are).

        I struggle with how much to attribute to autism when I consider my mother’s behavior. But I also know that her brain wiring influences how she interacts with people and how she thinks about everyone else. I try to limit what I write to focus on my mother and not draw conclusions about anyone else with autism. That is not to say that I don’t think her autism is a force in how she treats her children. Other children of parents with autism have written to tell me that their experience is so much like mine.

        Please understand, Eliza, that people like Callan and me have been trying to understand our parent and cope with feeling unloved since we were innocent children. We had no framework for understanding our parent’s emotional and behavior boundaries. And as kids, that’s not our role. It’s also not reasonable to expect children to tell their parents what’s important.

        Please take a minute to read your comments from the point of view of a child whose parent doesn’t show love: you are suggesting that if only I’d known as a child to tell my mother that it was important to me that she act like she love me, all would have been well. Really? It was up to me to tell her to act loving and acknowledge my needs?

        I’m sorry, Eliza, if it’s hard to read what I’ve written and what Callan has commented. I don’t want to hurt anyone else. But I want to understand and to be understood. For me, having a mother with autism has been a life-long struggle. I don’t think that even today much of anything would change if I just told my mother what’s important.

        I hope the very best for you. I hope you demonstrate love and empathy and reciprocity in your relationships with other people. I hope you can have richer relationships than my mother can. I hope, too, that you can appreciate that people with a parent who can’t have a loving relationship are hurt and that they benefit from sharing their experiences with people who can understand what life has been like for them.

        – Sarah

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      2. Callan

        And you continue the abuse, Gilsen, as predicted. Do you start with any sympathy – no. Your sense of offence is an expectation for getting sympathy from others, but you don’t begin with any yourself. You’re an example of the very same abuse cycle, of expecting others to dance around your every emotion, sympathizing with everything you might feel, while you demonstrate no sympathy, no care, no love. I haven’t gone past your first two sentences because it’s just another twist of the knife – and I know, that doesn’t matter to you because that’s nothing to do with your needs – it’s all about your group X not being offended.

        When a group demands respect only and does not acknowledge the hurt of others from abuse done by members of that group, yes, that whole group is doing something wrong. Hopefully someone who’ll speak up for the group in question can start with actual sympathy, rather than ‘MY side needs to be protected, that’s the first thing to establish!’. The best way to prove me wrong would be to start with sympathy. If that’s impossible, that’s my point.

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  4. Anonymouse

    Wow that response is uncalled for.

    Callan: When I say that you can’t generalise, I mean just that. You can’t generalise. I don’t sugar coat that. In exactly the same way I wouldn’t accept “I was mugged by a black guy and they’re all criminals. I know for a fact that they’re all criminals because they’re economically disadvantaged.” Not because I’m black (I’m not) but because I know what’s right. You know for a fact that *most* autistics are incapable of feeling love, based on a sample size of… how many? Oh and some theories of “empathy” that are highly contested. Try googling the “double empathy problem”. And it’s not “my side” versus “your side” – I don’t say or even imply that. Your original reference to “political correctness” is somewhat of a red flag. I have never seen that phrase employed other than as bait, whether the topic of conversation was race equality, women’s rights, climate change. Or indeed neurodiversity. But one can be expect nothing but sympathy and respectful debate in return?

    Sarah: I originally found your blog as my mother also has Aspergers. Undiagnosed, with a 25 year drink problem that destroyed my childhood. So yes, I understand. I hope you will understand *my* frustration at having every word I have written twisted to mean something I haven’t actually said. I do now wish I hadn’t bothered commenting,

    My own blog is at emotionalsupporthamster.wordpress.com if you are interested.

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    1. Anonymouse

      The Wow that response is uncalled for.

      Callan: When I say that you can’t generalise, I mean just that. You can’t generalise. I don’t sugar coat that. In exactly the same way I wouldn’t accept “I was mugged by a black guy and they’re all criminals. I know for a fact that they’re all criminals because they’re economically disadvantaged.” Not because I’m black (I’m not) but because I know what’s right. You know for a fact that *most* autistics are incapable of feeling love, based on a sample size of… how many? Oh and some theories of “empathy” that are highly contested. Try googling the “double empathy problem”. And it’s not “my side” versus “your side” – I don’t say or even imply that. Your original reference to “political correctness” is somewhat of a red flag. I have never seen that phrase employed other than as bait, whether the topic of conversation was race equality, women’s rights, climate change. Or indeed neurodiversity. But one can be expect nothing but sympathy and respectful debate in return?

      Sarah: I originally found your blog as my mother also has Aspergers. Undiagnosed, with a 25 year drink problem that destroyed my childhood. So yes, I understand. I hope you will understand *my* frustration at having every word I have written twisted to mean something I haven’t actually said. I do now wish I hadn’t bothered commenting,

      My own blog is at emotionalsupporthamster.wordpress.com if you are interested.

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      1. Callan

        See, I’m offering you a way of building a bridge here. And I’m anticipating you’ll do anything but build a bridge – for the very reasons I outlined. You want to demand control – you want to be in control. You don’t want to give sympathy – that wont let you be in control. Giving sympathy might – gasp – make you vulnerable to being someones punching bag! Can’t have that! So keep demanding control!

        Except if you want sympathy you have to risk giving sympathy/risk someone will abuse your sympathy and make you a punching bag.

        You have to risk.

        And that’s not easy for someone with a very difficult childhood. They just demand control over and over because the vulnerability of sympathy just means to them ‘HURT!’ and why would they choose hurt? No one chooses hurt.

        So demand control again, demand I do this or that because you are a victim, even though I too am a victim. I’m just seeing your hurt each time, more and more. Maybe one day you’ll see mine/someone elses.

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    2. Callan

      More lack of sympathy. Which was my point. You think you deserve the right of no generalisations while you don’t show any care about anyone else’s position. You want sympathy but you wont give sympathy. I’ve already said that once – the more you ignore it the more it validates the generalisation.

      You know what, it’s sad your mother had a 25 year drink problem, it’s a hard thing. I can give some sympathy, even if you think it’s fragmentary. I don’t just close off because the other person didn’t acknowledge my issue instantly.

      On the other hand though maybe I’m just going through the same pattern of trying to care that did not work out. Yet another person whom my own emotions must dance around.

      But its probably come down to tribalism – the act of sympathy will come off at an attack, because I’m from ‘the evil tribe’.

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  5. Anonymouse

    I also wonder why, having the choice of whether to approve my post or not, you couldn’t simply have ignored it but instead you decided to hold it up, patronisingly, as an example of an autistic person who needs help to emote appropriately.

    As a woman I am no stranger to being patronised. It was not until I was diagnosed, very recently, that I experienced being patronised to the nth degree, with people feeling entitled to talk to me as if I were a child or an idiot. Worse now at 40 years old with a diagnosis of Aspergers than in my 20s with far less life experience.

    Somebody who feels the need to make me responsible for their childhood trauma because I share a characteristic with the parent who is the only person actually responsible for that trauma gives no empathy and gets none from me in return.

    I have actually suffered just as much as you at the hands of my parent and probably more. At least you as a neurotypical person have the privilege of being able to derive support and understanding from those around you. I have one friend who is autistic and whose mother is also toxic and undiagnosed. I have known him for 5 years and before that I had no one to have that discussion with. I showed him your comments and his reaction was much the same as mine.

    All of this is extraneous detail that doesn’t necessarily belong in my original comment.
    It is a judgement whether to put it in. I chose not to; I don’t know whether it was the choosing not to or the simple fact of being one of “the other lot” that has exposed me, on the one hand, to a level of vitriolic counterclaim and, on the other, to being patronised almost to death.

    I am no one’s punching bag.

    I do not need any lessons on how to write or how to appear more empathetic.

    If you want to enrage an autistic person, try implying that they need help to express themselves more “normally”. That will usually do it.

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    1. Callan

      It was patronizing in your opinion.

      We’ve a world of people who insist they know exactly what someone else meant better than the other person does, as if they are an authority somehow.

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      1. Anonymouse

        Tell you what Callan/ Sarah.

        Why don’t you read what Sarah wrote about #metoo. Which incidentally I fully agree with.

        The irony is that she does not see the issues she describes – being patronised, dismissed, gaslighted, talked over – as applying to autistic women in double measure.

        Oh and this entire thread has been you twisting my words because apparently you knew exactly what I meant.

        Motes and beams.

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      2. Callan

        I’m twisting your words in your opinion.

        Currently you’re gaslighting me – or so is my opinion, in telling me I’ve done things which I don’t think I have.

        Do you want to talk or do you just want to attack? Some people pretend they want to talk but really just abuse the notion of talking to send out verbal attacks. They don’t care if they treat opinions as facts, because it’s just an attack. Such people would give a BS responce to this question, simply to keep the pretense of talking up so they can abuse it again for a further attack. I describe it in case they have a conscience about it.

        Some people have been so talked over that they become a person who talks over others in the end. Do you trust anyone you talk to? You’re only going to end up attacking people you don’t trust at all.

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      3. Anonymouse

        Callan,

        We are clearly at cross-purposes here. I genuinely have no idea what you are talking about.

        I’m really struck by the fact you have a parent on the spectrum and a blog about Dungeons & Dragons. Of course I do not imply that those things in and of themselves mean that one is not neurotypical. Of course there is nothing at all wrong with being autistic, except that you seem to think that there is… “incapable of love” I think you said, with the implication that one is not quite human, and I cannot believe anyone is that ignorant of 20th century history that they cannot see that as offensive.

        You do also seem to have a somewhat perseverative desire to have the last word.

        Please do me a favour and deal with your self-hating Aspie-ness without involving me in it.

        Goodnight.

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      4. Callan

        So you only want to attack (while somehow hypocritically generalizing D&D as automatically related to autism, as some frosting on the cake).

        You’re a troll and you’ve wasted your time typing since you just came to troll and attack, rather than talk. If somewhere under your own hate you think you deserve some kind of respect, you’ve gone the entirely wrong way in talking about it and have been ignored instead. Keep trolling and being ignored and wondering why people don’t give the respect you demand – you’re your own worst enemy.

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      5. Anonymouse

        Again, no, I didn’t say that, specifically used words “of course I do not imply…” to demonstrate that I was *not* generalising or saying “automatically related” – that’s what “do not imply” means!

        You’re either lacking in basic reading comprehension or you’re the troll.

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  6. Callan

    Sarah, that was a really odd encounter. Classic trolling from that poster, but it’s weird how they (as in trolls) will accuse people of the very same thing they do – for example, generalising D&D as being somehow related to autism, after complaining about generalisations.

    I think people sometimes just go into attack mode (NT or whatever) and just never come out of it – conversation is abused as the person in attack mode just pretends they want to converse while just using it to attack. Generally the main sign is the attacking person cannot agree on anything with the other person – they can’t even agree the sky is blue during the day. They can’t bring themselves to agree with their interlocutor even on tiny things, because they hate them. For myself, I already agreed her childhood would have been difficult. I hope I didn’t just drift over into attack mode as well.

    My goodness though, complaining about generalisations, then generalising D&D as automatically being related to autism. I play regularly at a games club with about five tables of five people on the night and either that’s a lot of people with autism all at once or hate makes people say some really hypocritical things.

    Sorry for churning up your blog – I just wanted to let out some of my feelings from my past to begin with, then stuff happened. Hope your own situation is running as smooth as it can. Thanks.

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    1. Anonymouse

      There was no “generalisation”. There were words specifically stating “I do not imply”.

      Callan has been quite obsessive in posting multiple replies here.

      I’m merely the person who pointed out that it is “offensive and wrong” to say that autistic people are incapable of love. And I stand by that. Anyone with any grasp of 20th century history can see where treating someone as being in some way lacking in human-ness leads. That has not been addressed at all but dismissed by being patronised on the one hand and attacked on the other.

      I’m just the angry [insert marginalised group] trope.

      I guess if you call your blog “my mother has Aspergers” you should be ready for the reality that a lot of people whose mothers also have Aspergers are themselves autistic, because it is a highly heritable condition.

      FWIW the suggestion of someone else I showed this blog to was that Sarah’s mother may well have a personality disorder in addition to being on the spectrum.

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  7. Anonymouse

    As if to prove I’m just a troll, I actually now need to walk away from this in order to write a submission that I have been specifically requested to write about how – before I was aware of being autistic – I was bullied out of a good job. I have been asked to write this by a trustee of the charity I volunteer for and previously worked for as they would like to do something about the manager in question, who has been responsible for a lot of good people – at least 10 – resigning.

    Being easy meat for that type of person is just one of the realities of autism.

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