I haven’t posted much for a while. I’ve been feeling discouraged because my perspective is at odds with the prevailing narrative of autism, and I know mine is a story that can hurt the feelings and hopes of other people. The author of one comment on this blog told me I was harming people with autism by telling my story.
So should I just keep this story to myself? Should I just get over it?
Nearly all blogs and articles I read offer the same messages: that autism is a problem only because other people aren’t understanding and supportive; that people with autism don’t really lack empathy; that good people wouldn’t change anything about their loved one with autism. Because I can’t say those things, because I have chosen to articulate the difficulty of my experiences as a child of an autistic mother, because I do wish my mother could change, the implication is that my story is unspeakable, and I must be a terrible person.
I’ve been thinking that my story and my views are intolerable unless I can get to a state of mind that not only forgives all of my mother’s hurtful behavior but goes as far as embracing it. To be a good person, I need to be able to say the same things parents of ASD kids say: that in spite of the challenges, my mother is warm and funny and loving, and I don’t wish she were any different. I really do wish I could feel nothing but admiration and compassion for her challenges in making her way in a world she finds so stressful. I wish I could release the hurt I’ve felt when her choices have shown that she is oblivious to my feelings, that her feelings for me are shallow, and that our relationship goes only one way. But so far I can’t. And I can’t even convince myself that I should. It seems dishonest and goes beyond self-effacement.
If I had a magic wand, I would give everyone on the autism spectrum the gift of empathy so that they could understand how to address other people’s feelings and needs. I would give them peace from the stress that fills so much of their hearts. So, yes, I would change them if I could. And that has become a forbidden wish.
I don’t want to demean or belittle people with brain wiring that they did not choose. I understand it is awful to know that some people think you need to be different in a way that you can’t control. How can I live with myself for wishing this – since it means I am implying some people are fundamentally flawed? Am I just as heartless and ignorant as people who are racist or who think homosexuality can be cured?
I read something a while ago that gave me some hope that perhaps more realistic and difficult viewpoints about autism can find a place:
In “What We Can All Learn from Autistic People in Love,” by Emily Shire, which appeared online in The Daily Beast,[1] one of the subjects is a woman with autism named Lindsey. Lindsey says, “’The media has the tendency to twist something into what the disability community calls an ‘inspiration story,’ putting us on a pedestal as inspiration objects rather than treating us as real people,’ she explains. She didn’t want to be dehumanized.’”
The most important idea that Lindsey expressed – to me anyway – is that it’s both unrealistic and condescending to insist on portraying people with any kind of disability as an inspiration. It’s wrong, I agree, to insist that all messages about disabilities have to suppress any negative consequences. And it’s not helpful to recast a disability as no more than difference.
We’re all flawed. We’re all struggling. We all could use some understanding. Sometimes our needs are in conflict. Sometimes even the most empathetic of us can’t soften our hearts. Sometimes we all have to be accountable.
I needed a mother with empathy. I still do. I think we all need that. Some people don’t have empathy, and that, I believe, is profoundly tragic. It’s so tragic and important that I think it is absurd to silence the message even though I know it hurts those people who don’t have empathy. And I include people who insist they do have empathy but they just don’t know how to express it – because the truth is empathy matters when the other person can see that you can act on it, when you can set your needs aside for someone else’s.
I think I’m being brave to write about my experiences, especially when my view is unpopular. I know some people will think I am cruel and bitter and should be silent unless I can be cheerful and supportive.
But if I keep it quiet, it’s still true.
[1] http://www.thedailybeast.com/articles/2015/04/15/what-we-can-all-learn-from-autistic-people-in-love.html
mymotherhasaspergers 
Although a respectful tone is important (which I think you often choose well in your blog posts) it is equally important that children of autistic parents like yourself and myself are allowed to voice your concerns, hurts and struggles you faced while growing up and struggles you still face now that your mother is aging. Research and psychology is still waayyy behind on this, it is pioneers like yourself who are brave enough to speak up and voice your concerns with regards to the disability that is autism and how parenting abilities may be affected by said autism.
The difficulty with autism is that some autistic people are blind to their own disability. Which is understandable. After all, how can you know that your Theory of Mind is impaired if you need said ToM to recognize when you hurt someone else’s feelings? (Let alone recognize that you may not be responding adequately to your childs needs…?) This may mean that if you voice your concerns, they may genuinely not see the problem and feel that they are being accused of something that cannot ever be true, anywhere in the world.
Acknowledgement for the neglect you faced is important. We know our mothers didn’t intend to inflict harm upon us. And yet it happened. Those who experienced emotional neglect, will understand best what it’s like and what the impact is. Empathy is situation dependent. The bus driver doesn’t expect much empathy from you, as long as you pay. Your coworkers expect a little more, because you have to work together. Your partner needs even more empathy and empathic acts. A young child needs most empathy of all, because the mother needs to know without the child being able to tell her that it is hungry, in pain, angry, tired, sad, happy, excited, disappointed, afraid, etcetera. This means that impairment of automatic, intuitive empathy and empathic acting is most detrimental to the child, because his/her need is greatest. This is something that only few people really ‘get’.
Much like any debate on the internet, it is a minority that shouts out the loudest. Many autistic people have family life, friends and work to attend to and you won’t see them online. This may give a skewed view of the autistic population, much like with the rest of the population. The internet is just that, a virtual place with lots of letters. Writing what you need to write about your own private pains is everyone’s privilege. It is important not to write in a way that will turn people off, or your message may be ignored altogether, because we do want psychologists, therapists and experts to become aware of this potential risk in autistic parents. Until proper research has been done as to what percentage of autistic parents may be seriously disabled in terms of parenting and what the effects are on the overall population, we need to strike a balance somewhere that acknowledges our own pains, without pretending we know every autistic parent or child of autistic parents out there. There’s a delicate balance somewhere. We’re all searching for it.
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Anna,
Thank you for your support and your interesting comment. I recently read about Pathological Accommodation, which describes children who are raised to set aside their needs to get any attention or other sign of caring from a self-absorbed parent who demands that their children focus on the needs of the parent. I see that I am definitely an accommodator – here am I accommodating a viewpoint that is out of sync with my experience as well as accommodating people who criticize me for talking about my experience.
Sarah
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I’m so, so very happy to find your blog. I’m 44 and only in the last 2 years have I come to finally understand my mom as being on the spectrum. The funny thing is : I have worked with adolescents on the spectrum for 15 years! Imagine my surprise when a very talented therapist helped me connect the dots. I’m just starting to unpack what’s mine and what’s my mom’s in my baggage. I’m so thankful that you are writing about this. Sherry
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I am Autistic (Level 1 ASD subtype Aspergers) and I am a mother, a single mother. I didn’t know much if anything about Autism until 6 months ago, let alone that I am on the spectrum. Speak your truth, as you said – if you keep it quiet it’s still true. All Autistics are different, as are non-Autistics – it’s your story, about your life and it’s valid. 🙌
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Thank you so much for your compassion.
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I have spent so many years consumed with guilt about how I felt about my parents with Asperger’s. I love them, but don’t like spending too much time with them, sometimes I think I would be happy to have no interaction at times.
As a family, we had struggles when I was younger, with my dad transitioning to becoming a woman while I was doing my exams, my parents splitting up etc, but my parents never acknowledged how I felt in all of this. I had no support at all, and felt very alone. I have only recently acknowledged this.
What it is important to remember is that your feelings are valid! You are expressing how her behavior made you feel, which is important not only for you, but for others like me, who desperately need to know they are not alone!!
I think that we have to acknowledge that people cannot help how they are “wired” but equally, you cannot help that this behavior affects you!! Please continue with this, it is important!!!
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Thank you. I get discouraged when people criticize me for speaking up. After a growing up with a mother who made me feel that my needs and point of view are not important, it’s hard to be dismissed for speaking up – even when the message is hard to read.
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“The author of one comment on this blog told me I was harming people with autism by telling my story.
So should I just keep this story to myself? Should I just get over it?”
Yes you absolutely should not keep your story to yourself please! I’ve just discovered your blog and it really helps me. It’s a shame how nasty some comments from AS parents have been on other forums. Every comment is taken as a personal attack on themselves.
I consider this behaviour and that of my own AS parents to be very similar to gas lighting, but without the deliberate malice. Regardless of malice, the effect is the same. It will drive a small child crazy and leave you unable to trust your own reality and responses.
I no longer have anything to do with my parents or older brother (all AS). They are not able to love me. They can not be trusted not to hurt me yet again. I would rather invest my time and effort in other relationships which may only have a spec of hope of developing into love, rather than enduring any more of my family’s emotional abuse through neglect.
To say something very incendiary, I do not believe that my parents have the necessary skills to bring up functioning NT children (my brother is AS and is OK) and therefore they should not have had children. If your entire response to an unhappy, crying child is to goad them for ‘just grizzling again” and treat the signs of deep unhappiness and stress (trichotillomania) as just a crazy child and opine “how it upsets me so much when you pull your hair out” then your interpersonal skills are not sufficient to be responsible for anyone else.
I am so hurt that I never had and never will have a loving mother or father. That I could never feel safe with them and experience that closeness. Even playing with a parent or having a hug.
I’m not extrapolating my views to to all AS parents, only describing my own. My parents have no self awareness or desire to change. I suspect the same could not be said for any AS person who has sought out this blog.
I won’t be more understanding and forgiving of my parents, as some people may say. They have damaged me deeply and irrevocably. They cannot recognise this or reconcile it. I do not owe them anything. I will not tolerate their behaviour any further. They do not deserve me. I owe it only to myself to attempt to be happy. Which I may never succeed in.
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I’m so sorry about all the pain and lack of love you’ve endured. It took me many years and mistakes to finally gain some faith that my needs are important and I am worthy of love. Our ASD parent didn’t intend to teach us that, but their unilateral behavior groomed their children to feel unlovable and valued only as a server of their needs.
I wish you all the best. I hope you have some people to talk to who can understand your experience. People with loving parents often can’t grasp what it’s like not to have that love and concern and empathy.
Please remember you deserved better then, and you deserve better now.
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