Tearing down the house – Autism

A letter to many therapists.

When you try to tell a therapist your mother is autistic, many choose the attack: “Oh and why do you think that?”. They look at you in a threatening way. Or they ignore it, never come back to this again and write down “client has the idea that her mother is autistic”.

If there is one way to instantly break whatever faith I have in you, then this is the way to do it. Fuck, man, you need to know better than that. I’m using the most accurate word to express what I went through.

Fact seems to be that regular healthcare providers are clueless about what having an autistic parent does to you. But if you really want to know. Here goes.

My mother does not intuitively understand other people’s needs, wants desires and emotions. She never looked me in the eye as a child. Like many autistic people, she learned how to do this later in life, when I was in my twenties.

We were never hugged, until she saw it in a movie I think. She started grabbing at me like a robot in my teens. I felt harassed. She would come at me with a manic look in her eyes: she had decided that now was the time to hug. I let her do this for a long time, having become afraid of her meltdowns. But at some point it made me feel so violated that I told her: It always feels like you’re coming to take a hug from me. She collapsed in hysterical tears. Nowadays, she knows how to hug. I have been the instructor for my mother’s social behavior. That’s not normal. I needed a mother who taught me this shit!

We were rarely comforted. The only things that mattered were things she could understand. When you fall and bleed, she panics. When there is no blood, she does nothing. I broke my foot and she didn’t bring me to a doctor until weeks later (although she did take me there once she understood I still had pain). My brother cycled into barbed wire and she ran off in hysterics, leaving me behind at home. (It took 10 years to find a therapist who I could tell the story to, who said “That’s child abuse”.) She did not once soothe or console us after this or any other event or emergency. Once, when my brother fell, my mother started hysterically crying. I was in my early teens and I had to scream at her to call the emergency line when my father drank so much that he stopped breathing.

She does not recognize sadness until you’re crying. She doesn’t recognize fear until you’re literally (this is one of those rare moments where literally really means literally) shaking. She doesn’t recognize anger until you snap at her. She does not recognize joy, comfort or satisfaction in others. You must dial up the volume on everything for her to see what you feel.

She did not help us contain and cope with emotions. She cannot.

The earliest story about me as a baby: My mother was hysterical because she didn’t know “how to make me quiet”. My parents left me in my crib, howling, they left the house and went for a walk, they let me cry myself to sleep.

When my father kicked me, she did not do anything. She didn’t hug me, soothe me, console me. She didn’t get angry at my father. She did nothing. She later said that she thought his kick hadn’t connected, she didn’t realize how the gesture alone and the rage he showed were extremely damaging in themselves.

The earliest story about my brother as a baby: My brother would keep crying and crying. A lady who was visiting my parents exclaimed: “Don’t you see your child is hungry??” My mother started feeding my brother an extra bottle. At the GGD (healthcare check-up for babies) they at some point said she had to start feeding him less. She had replied: “No, he is now quiet.”

She did not play phonecall with me, she did not play tea party with me, she did not have conversations with me that were age-appropriate. She cannot emotionally reciprocate. She only responds appropriately when she understands what needs to be done. Which is fine when you are buying a bus ticket, but not okay when you do not know how to raise a child. Yes, she sang me songs for bedtime and read me stories when I was a young child. She obviously read a lot on things a mother should do. She loved to color, and colored with me. But she couldn’t respond in a flexible manner when I needed something she hadn’t thought of in advance.

The aftereffects of our childhood are as pervasive as the disorder our mother has. (And don’t get me started on our alcoholic, self-absorbed father.)

How do you describe a mother with autism? If you didn’t grow up with one, I don’t think you can understand. I may get flak for this, saying that there are people out there who get it, but I find that to be a comforting lie. Only when I talk with people who also have an autistic parent, then people understand. You don’t have to provide 1000 pieces of evidence to prove it. Nobody says, with an anecdote: “Ohh but my mother also acts weird sometimes.” No, that’s not it. My mother doesn’t “act weird sometimes”. My mother is always out of tune, off-key.

There was no structure at home, except for those things that were in her calendar, they had to be followed to the letter. If you weren’t home at the exact same time every day: Panic!

She doesn’t have a picture in her mind of where you are, that you have a life. Out of sight = out of mind = panic.

She demanded that when I went to secondary school, that I wouldn’t bike a certain route that frightened her. There were no street lights and therefore danger. But how I was doing emotionally, not a clue. All she can do is throw feelgood-sayings at you. Every single time you are talking about something difficult, she will push scripted advice your way. She is not an active listener, she does not mirror your emotions, she cannot empathize. She either panics, or pushes advice that is construed to make your (or her) bad feelings disappear from her field of view. She does not experience it this way, she does not see how her behavior affects others. The only thing that works is drilling her to learn the correct behavior. But as children, we could not: She would have a meltdown whenever something didn’t go in the fairy-land way she had imagined it.

She insisted that we would be “best friends when you grow up” but had no clue that she both neglected and suffocated me. She didn’t teach me about sex. And I don’t mean penis-in-vagina. She didn’t teach me about what sex is like. You know, she really didn’t teach me anything about relating to other people. She probably intended to, but lecturing your children is not the same as modeling the behavior. She could not.

When I went to university, she texted me several times a day, every day. I was drilled to reply. And so I did. A fellow student saw this and said “Just switch off your phone”. At some point, she called me, shrieking with anger “When I text you I want an answer!”. I snapped: “I have my own life, I’m not sitting in a cupboard waiting for your texts!”. This terrified her and for a long time whenever she called (every Saturday at exactly 10 o clock) she would start with “am I interrupting?”.

Don’t get me wrong. My mother really, really, really wants to be a good mother. She really, really, really wants to. Apparently she had once said “I’ll do better than my own mom.” Which makes it extra sad, because she neglected and even inadvertently abused us. She would repeat, over and over again, how her mother had pulled her ears when she was a kid and that she was afraid that that was why her earlobes are elongated. She didn’t once realize that she was doing the exact same to us. I remember as child, panicking, shrieking “no no no no” as she came up to me in a horrific rage, grabbed my ear and pulled me to my room.

She doesn’t understand that what she says, might be inconvenient for another person, or hurtful, or unhelpful. In 30 years’ time she has learned a lot more about social interactions, but when I was a kid and teen she would erupt in intense meltdowns, screaming “I mean well!!!!!” and “I can never do it right, can I?!?!?”, not realizing that these exclamations are in fact a passive-aggressive attack. My mother terminates the conversation if she can’t bear it, saying “Change subject now, change subject now”. Or she interrupts in a childlike and repetitive manner when she cannot talk about the thing you are talking about. She will derail the conversation. Repeatedly. Joep once expressed how exhausting it was to have a conversation with my mother, because there is no thread of conversation there. She cannot hold a conversation. She does not understand the flow of it and will interject any random thought that comes into her mind. Even if you are two sentences further already and the topic is subtly changing, she can say something that has now become only tangentially related to the conversation. Or she will abruptly start about something new. It doesn’t matter if you were talking about something else: She cannot track your mental state so the only thing that exist are her own thoughts. Only social situations with a strict script, she can do. Like ordering food and drinks. But only barely. If the food or drink takes a bit longer than normal, she becomes extremely agitated.

When I was in primary school, she was obsessed with Rene Froger, a singer. Every day when I came home, the same CD was on repeat. It drove me mad. She wasn’t interested in going to a concert. She just wanted that CD, all day, every day. Later it was herbs, then healing crystals, then French language, then psychology, then a dog, then singing, then reiki, then angel healing. Every new hobby has a terrifying intensity to it and she will tell you all about it like an 8 year old who has made a drawing. In fact, she gifts me drawings, paintings and homemade cards. Nothing wrong with that in theory, but it’s the way in which she does this which is typical: She is convinced I will like it, because she likes it.

She wanted the best for us. Truly. But only the things she could think of were done. She didn’t feel what her children needed. If she did, I am convinced she would have done something about the child abuse at the hands of my father. She cannot see it. It is impossible to talk to her about what we missed. It is impossible. She cannot hear you.

It’s really difficult to have a good relationship with my mother, without feeling suffocated or without her feeling hurt. The intensity with which she wants to have a connection is too much, but it lacks any and all depth. But because she really wants to and wants to connect, makes it difficult. She means well.

When we tried to educate my mother on the things she was missing in her social script, she would sneer, shrug and say “tss” or some other sound. She would blow and make a handwaving sound. She would do something, anything, to make her discomfort go away. Like a child that figures out what works to get her needs met, she would develop these reflexes that would effectively shut us up. Whatever works to make you shut up, she does reflexively.

How do normal families deal with anger or disagreement? My mother does not ever talk about things again.

The list of things my mother didn’t do, goes on and on. Emotional neglect is not about what is done to you, it is what failed to happen for you. Autism is not about what the person does, it’s about what they fail to grasp intuivitely.

It seems taboo to say that the relationship with your parents is difficult, or that you are missing things. It’s almost as if you can’t say this. But if there’s anyone who gets to say anything about my parents, it’s me. I grew up with them and saw them at their worst. The outside world only saw them at their best.

You try living with them for 20 years. My boyfriend was shocked when we first visited my parents at their own house and my mother was exceptionally hyperactive. He said “Shit, you grew up in this?”. It was validating to hear such recognition.

Sometimes I wish I could put other people in the same house as my parents for a month.

Meaning well is not the same as doing right. This holds for mothers, and also for therapists. Just because you mean well, doesn’t mean that you cannot do harm by completely misunderstanding what your client needs. I have encountered too many therapists who act from a position of well-meaning but misunderstanding. If you want to be a perfect trigger for me, you do that. You’ll immediately project yourself into my mother. Congratulations, we’re perpetuating my patterns now..

I have come to understand the disability that my mother has. And thanks to intense grief-directed-therapy I have mourned the mother that I will never have. I did not have a mother when I grow up. Now, as an adult myself, having worked on the grief, I can often receive what this emotionally eight year old woman wants to give me. She means well. She is one of the most optimistic people I know. And yet, she was an inadequate mother. You have to be able to hold those two things in your mind at the same time, to understand what it’s like.

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