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


2 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 🙂


  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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