Ten years ago while chatting with friends at one of my son’s Little League games, the topic of high-maintenance parents came up. After others told stories of their parents’ and in-laws’ outrageous selfishness and demanding behavior, I told the tale of the laundry on my wedding day. My friend Janet, who has a full set of unreasonable parents and in-laws, was stunned. “That’s the winning story,” she declared. And everyone else agreed. That was the moment I really realized how unusual my mother is.
Going public with that hidden side of my life that afternoon and seeing my mother’s actions through other people’s eyes offered confirmation that I was allowed to look analytically at my mother’s behavior and acknowledge the damage. I hoped – and still do – that this honest reflection will help me escape from some of the ingrained messages she that raised me on and I have – perhaps pathetically – not completely outgrown on my own.
I love my mother and don’t want her to feel bad about herself. She’s not going to change, and I don’t want to hurt her. I don’t want her to spurn me the way she did her mother when she saw that she was being criticized. I don’t want her to read this.
I wrote this not to hurt her or anyone with Aspergers, though I know some of what I say about this condition will wound and infuriate some people who have Aspergers or who love a child whose brain is wired this way. I really am sorry to open that wound. I know my experience is hard, maybe impossible, for you to accept.
In part I wrote this to tell myself to rewire my brain to accept my mother as she is, not as I thought she was and always wanted her to be. It’s so hard to stop wanting to believe that she loves me like I love my sons. I still want her to care about more than what I can do for her.
I wrote this for people who could be open to learning from my experience. One reason I decided to write it in spite of my mother’s feelings and my relatives’ reasonable expectations of privacy and my own dread of being attacked is that I believe I am presenting an important perspective that is thoroughly overlooked, especially as Aspergers awareness grows. The impression delivered by most material about Aspergers is that everyone who has this condition is a child and that this syndrome, while presenting some challenges for families, is also a kind of gift to the world, and the only missing piece is acceptance and accommodation from everyone else. Aspergers does present some gifts, but they are not free.
I know that all loving parents passionately need to believe that their child is what we all imagine: healthy and smart and able and loving. I understand that parents of children on the autism spectrum, already heart-broken by the diagnosis and worried about how everyone else will treat their child, want and deserve the best possible outcome and the kindest possible world for their children. I understand looking for some other form of specialness that compensates for the difficulties that most people with Aspergers face. I struggle with worry that this book will cause more suffering for these families. I suppose this concern is why almost no attention is accorded to the children of people on the autism spectrum.
It may seem cruel to want to be heard since my message isn’t heartening, and I can’t spin it as a rainbow after the storm. Even so, I can’t agree that out of consideration for parents of children with Aspergers or for adults with Aspergers, I should not dare speak of what it’s like to be a child of a parent with this brain type. I know this is a generalization, but I think it’s fair to say that most children of parents with Aspergers grow up as witnesses of our parent’s enthusiastic interest in something other than us, while we learn to be useful to them and take care of ourselves. We cling to the hope that our parent will one day drop the mask of indifference to reveal a hidden true self, to love us after all. We’re used to not having our needs and feelings considered, and every time I feel bad that I am being hurtful and shouldn’t present a realistic portrait of a parent with Aspergers, I remind myself that the issues are no less true if no one is willing to bring them up.
Copyright 2014 Sarah Meyer Noel. All rights reserved.
mymotherhasaspergers 
I have read some of your posts. Your descriptions paint a picture of a mother who is a narcissist + have serious anxiety issues. Most of what you label “Asperger’s” in your posts’s descriptions of your mother sounds like narcissistic traits – selfishness, lack of caring about others, neediness. I am not saying that she doesn’t also have Asperger’s – it is perfectly possible and even common for autistic persons to have comorbid mental (and physical) conditions, so it is very possible your mother has a mix of narcissistic and autistic traits. However, not everyone with Asperger’s/autism is a narcissistic – far from it – and many, possibly most, women with Asperger’s/autism do not lack empathy; many feel they have too much empathy. In some cases it may appear that way due to the social disconnection, lack of reception of nonverbal cues, confusion, social anxiety and so on, but it isn’t as simple as “empathy is missing”. Also, every person is unique – that goes for normal persons as well as autistic persons. Your mother may simply be a very selfish person. Are some persons with Asperger’s very selfish? Sure. Are some normal (neurotypical) people very selfish? Yes, that too. It doesn’t mean that every trait and every flaw your mother has belongs in a big box labelled “Asperger’s”, and that that label explains everything or excuses everything.
Background information: I have Asperger’s myself and am concerned that your posts – which are personally descriptive, but quite uninformed about asperger’s/autism as a broader topic, and mostly based on outdated sterotypes – will harm persons like myself by making the general public more likely to confuse autism with narcissism. I recommend you read blogs written by mothers’ with asperger’s – of which there are many (blogs & mothers with ASD) – and you will note that they are all different, not necessarily anything like your mother, and that many take child rearing and parenthood extremely seriously, and in many cases have it as one of their biggest interest.
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Anna,
Thanks for your comments. I understand that what I have written can be hard to read. I also understand that everyone with Aspergers is different and do not intend to suggest otherwise. And of course I am aware that Aspergers is not the only cause – or even a cause at all – of some of my mother’s behavior.
I regret that you consider me uniformed. I have done a great deal of research on ASD and have read many blogs and books with perspectives that are different from mine. I have also researched narcissism; my mother does not qualify for this diagnosis.
My writing is not based on stereotypes but on my real experience. I do not wish to hurt anyone, and I know that some will find my point of view hurtful. People in my position – the children of someone with Aspergers – have little voice and are often discouraged or attacked for voicing our experience (see threads on Wrong Planet, for example). I hope you can accept that my point of view is valid even if you don’t like it.
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You say that your posts may be “hurtful”, as if you are speaking a hard truth people don’t want to hear. I’m saying that your posts may be harmful, which is not necessarily the same. By using Asperger’s as a catch-all and explain-all (almost) for all sorts of problematic traits your mother has, you are putting a lot of stuff in the Asperger’s category that doesn’t necessarily all belong there, which then stick to other autistic parents who are not at all like your mother, and not bad parents. I’m also still not impressed with your autism-understanding… confirmation bias may play in (paying most attention to theories and perspectives that confirm pre-existing expectations). For example, in another post you list “Lack of empathy” as a key feature of Asperger’s. That is an outmoded stereotype that simple doesn’t fit a lot of autistic people, particularly women. I’d suggest you tell your mother that you think she has Asperger’s, and see if she herself (after researching it) recognises herself in it. For most undiagnosed adult autistic women, once they discover the existence of ASD and in particular the female profile (which is different from the male profile in a number of ways) and recognise themselves, they experience an overwhelming AHA moment that keeps unravelling and leads to a ravine of self-insights, hindsight and changes. That could potentially bring about a really positive change in your family relationship. However, if your mother does not recognise herself in the descriptions, then perhaps it isn’t the right (or full) explanation. (I apologise if you’ve already done that and written about it; as I said I’ve only read a few posts).
Anyway. I’d like to recommend this series: Asperger’s and Motherhood by Cynthia Kim – for a different (and very well written) perspective. She is describing problems – not something rosy – just from a different perspective.
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Thank you for giving a voice to us, children of mothers with autism. I’ve been reading your blog today and knowing that I’m not the only one with a mother who is mindblind is immensely reassuring. Thank you.
It saddens me that there are people with autism who do not see the extent of their disability. A lot of autistics don’t recognize their own disability, *especially* women. Anna’s comment is a striking illustration of this, all she can focus on is on proving that you are wrong and that you should get a different perspective. Quite frankly, I don’t think we need a different perspective: We have our own and it needs to be heard and validated, if only by ourselves, in order to heal from the emotional neglect many of us suffered.
Thank you for writing this blog, I hope it will help you understand your mother and heal from the bizarre things you’ve experienced as a child.
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Anna, Thank you so much for your supportive comments. I do have a hard time with the opinion that I should not speak about – or even acknowledge – my experiences with an autistic mother. I know my views are very hard for some people to face. I struggle with how I can expect people with ASD (and their worried parents) to read what I am saying. But I also know that if I say nothing, the truth does not go away.
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I don’t see your blog as harmful to me, I’m learning all I can about ASD and blogs like yours are an eye-opener to the consequences of undiagnosed Aspergers, especially to their children. I have a son, I love him more than anything or anyone on Earth. Thankfully we have a close and supportive family that help us out when we need them. Blogs like this are motivation to keep learning, and to get the therapy I missed out on getting as a child, so my child doesn’t suffer like you have (I’m sorry). Thanks 😊
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Sarah, thank you for all you’ve shared in your blog. I’m just finding it but feel it will really help my husband and me. He is 36 and his mother is 75. She recently moved closer to us for help as she ages. She has never been diagnosed but i started researching after she got here, because everything about her was so puzzling to me. I feel 99% certain she has Asperger’s. The article that actually led me to your blog described how it is for an NT child of an Asperger’s parent. I showed my husband and he said it completely described his childhood. There are so few resources in this topic, so I’m grateful for your blog and hopeful that my husband will find solace in reading of your “shared” experiences.
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Welcome, Tiana. Yes, it’s so hard to find resources for people in our position. I’ve found it so helpful to talk my my sister. If your husband has siblings, I hope he is able to talk with them about the impact of his mother’s behavior. Best wishes to you both.
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