Apparently, I forgot to share this here🤷
Oops
Actually autistic
Crying in H Mart
I just finished reading Crying in H Mart by Michelle Zauner. If you don’t already know, as a makeshift crash course on memoir writing, I have been reading memoir almost exclusively. Every list of recommended memoirs includes Crying in H Mart, like every damn list. So… I read it. I have mixed feelings.
The book is well written. Much of the prose quite beautiful and though the timeline in nonlinear, it didn’t feel confusing to me in the slightest. That said, I really didn’t like it. Like it was ok. It was fine. Not how I want to feel after reading a memoir… I want my heart ripped out of my chest. I want it to hurt in the best way and then… Then I want the wound to be dressed and cared for, gently. I want to feel made whole again by words alone. I want inspiration. And I didn’t get that here. For me, I feel like the description of outside events, environment, what have you, far outweighed internal experience and quite frankly, I was bored.
I’ve come to realize that I may have different taste than the average reader and/or whoever the readers are that decide that a book is so good and deserves all the praise. This isn’t the first highly recommended memoir that I’ve felt this way about. It always comes down to the same thing. I am so much more interested in the writer’s internal experience, the description of their thoughts and emotions than I am the outside world. I have to be able to relate to the author and I have to be able to relate emotionally.
I don’t know why any of this is surprising to me. This is absolutely the reason that I consume media, whether it be books, movies/shows or music. Unless I am in it to learn, which is also huge for me (I need to know all the things, ALL THE THINGS), I’m basically using it to process my emotions. I have difficulty with identifying my own emotions. I’m very good at seeing them in others but myself, well, it’s s struggle. I need someone outside of myself to trigger these emotions so that I can feel and process them fully.
This post is definitely not a dis on Crying in H Mart or Michelle Zauner’s writing. It is a well written book. If you enjoy books that are highly descriptive of the environment, this may be for you, especially if you like descriptions of food or foreign cultures. If you’re like me and are more interested in the internal, maybe not (in maybe a third of the book there is more emotional description), maybe then you’d like the book I just read (Unbearable Lightness by Portia de Rossi) or the one I’m reading currently (Girl in Need of a Tourniquet by Merri Lisa Johnso) more 🤷
Anyway, this has me thinking about writing and my memoir. I’ve heard over and over that most writers new to memoir struggle with the whole show don’t tell thing but that that is easy to learn. That the real struggle tends to be understanding that when you are writing your memoir, you aren’t just talking about yourself, you are making a connection with a wider theme. You are using your story as an example of some wisdom that you attempting to impart. It isn’t about you, it’s about the lesson.
I think that may be backward for me. I may struggle with the former much more then the latter. The general point of my public writing is to use my life, my story, my struggles to help others feel less alone. I definitely use it for my own processing but I do so by connecting my experience to larger societal themes, right? I feel like that kind of comes naturally to be but description of things outside of myself… that may be a struggle for me.
Like I said, it doesn’t interest me. If I’m being completely honest, at times I just skim the outside description. It feels like unnecessary filler and it bores me. Given that much of my life had been lived inside of my head, that makes sense. What about you? How do you feel about description in writing? Do you prefer description of the scenery? The action? Or are you similar to me and prefer the internal landscape? Maybe both are equally important for you? I’m genuinely curious. Please drop a comment and let me know.
On Oppression
I watched the movie The Hate U Give. I woke up the next morning with these weird I running through my mind…
To those who have walked before me
I carry your pain in my heart
Your tears staining my face
Alongside my own
For all those who have lost their voice
Had their voice stripped
Existence dismantled
To become the emptiness
The nothingness
We speak
We shout
We cry out in agony
We cry out
Let us be heard
For all of those with no voice
I shall learn to use my own
The Hook
I’m still reading and participating in the exercises in Kelly Notaras‘ The Book you were Born to Write.
Kelly encourages writers to develop several “hooks” for their book. A hook being a short , attention-grabbing statement that describes the essence of your book and entices readers to want to learn more. She then suggests asking any followers you may have their opinion. So, here we go… Which of these do you like best? Which book would you be mostly likely to read? Is their one that stands out? None? A combination of two or more? Please let me know and again, please honesty and kindness.
- Growing up as an undiagnosed autistic woman, trapped in a world of addiction, self-harm, and codependency, living as though invisible and misunderstood. This raw, unflinching memoir reveals my battle to survive, break free from the glass, and finally be seen for who I truly am.
- Growing up as an undiagnosed autistic woman, fighting through addiction, self-harm, and codependency, all while feeling invisible in a world that doesn’t understand. This searing memoir is the story of my struggle to survive, break free from the glass, and reclaim life on my own terms.
- How not knowing I’m autistic caused me to live a life disconnected from myself and my journey back home.
- The author recalls a life of invisibility as an undiagnosed autistic woman and the events that led to her finally learning to live life on her own terms
- A memoir of a life of invisibility and how my children, the one I have and the one I almost had, lead to my autism diagnosis and self acceptance.
The Book you were Born to Write
I’ve been reading The Book you were Born to Write by Kelly Notaras.
I’m only about a third of the way through but so far, I’m finding it helpful. I’ve started working on my first memoir. I have actually written something, not much but something. I still didn’t have a full grasp on what I’m writing. I’ve got the gist but I’m still struggling with the structure and what I want to include. To help, I’ve been reading only writing books and memoirs. I’m using them like a class of sorts.
Anyway, The Book you were Born to Write…Kelly includes exercises that have nothing to do with the actual writing but more of the motivation to write, and getting clearer on your vision. She suggests that you make a mock cover for you book so that you have something tangible to hold in your hands. I don’t have the means to have one actually printed out but I did decide to make one so that I can visualize my book as well, a book. I’d like to know your opinions. Keep in mind that’s it’s really basic (I made it in Google photos in a very short amount of time). Please, if you give your opinion, be honest but also kind. Thank you ❤️
Pervasive Drive for Autonomy
I’ve mentioned before that my son is autistic with a PDA profile. PDA stands for pathological demand avoidance. There is push within the autism community to change the name to pervasive drive for autonomy. Aside from the fact that the term pathological demand avoidance is just plain stigmatizing, the reason for the proposed change is that the new name reflects what is really going on, a pervasive drive for autonomy.
People with PDA have a nervous system that becomes activated, i.e. they go into fight/flight/freeze, anytime there is a perceived loss of autonomy. Loss of autonomy is perceived as a threat to their life. This drive for autonomy outweighs all of their other survival drives and can make it difficult (if not impossible at times) for them to access survival needs like eating or sleep. This can look like demand avoidance but that is not the only way that it presents. At this point, I don’t think anyone really knows why this is, only that it is. What I know for sure, is that PDA children are intensely sensitive beings.
My sister and I were talking about this the other day. We were talking about how difficult it can be parenting a child with PDA because of their intense sensitivity. Casey from At Peace Parents says that in every interaction with your PDA child, you are either accommodating or activating their nervous system. Knowing my son the way that I do, I believe this is 100% accurate. Because of this, there is a need to think about what you’re doing in any interaction with your child in a way that a parent of a typical child would not have to. In what way should I phrase what I’m about to say to my child so that I don’t send him into fight or flight? Is what he is asking for doable? Who is involved? Are there any issues of safety? Do I have the energy to accommodate him? If I don’t, will he end up in a meltdown that requires more energy from me? And so on.
My sister and I were talking about this and how with as difficult as it can be, I am so glad that I am his mom. I came to parenting with the idea that children deserve respect and autonomy. I was able to see my son’s struggle as just that, struggle, not misbehavior and have been willing to do my best to accommodate him and learn what he needs from birth. This is not easy and it isn’t made any easier by the general view of how children should be parented in this society and the gross misunderstanding of PDA and autism in general. I practice low demand parenting. Many people, not understanding the PDA nervous system and it’s needs, mistake this as permissive parenting, AKA being a pushover. I’d like to give you an example from my life in order to illustrate what parenting a PDA child can look like in action.
My son likes cheesebread. He likes cheesebread from pizza places and he also likes to make it with his dad. My parents had ordered pizza and cheesebread the other day, so he has had cheesebread for breakfast the past few days. Yes, he eats cheesebread for breakfast. Alongside of it, he will have strawberry milk (a nutrition replacement shake), or his juice (multivitamin/magnesium/minerals) and fruit. This is the only way he will eat, at all… If he has his cheesebread.
He ate the last of it yesterday. He knew this but was not feeling ok with it. Last night, while getting him to sleep, he was insisting that he have cheesebread when we woke up. I explained that we didn’t have any. That if he wanted cheesebread, he would have to make some with Daddy. There were tears but we managed to get to sleep.
This morning, the first and only thing he would talk about was cheesebread. I’m not sure how to explain this in a way that will make sense to someone who isn’t in the situation, someone who doesn’t understand. He knew and understood that there was no cheesebread. He was upset about it but the lack of cheesebread wasn’t the problem. The problem was that he wasn’t able to choose what he wanted for breakfast. That I was telling him not only that he couldn’t have it but that if he wanted it, he had to make it. That I was telling him anything at all. His perception was that he had no autonomy in this situation and that is a threat to his survival.
He became withdrawn and wouldn’t talk, other than to say cheesebread and then began to follow me everywhere. Not demanding cheesebread. We had discussed it many times (“I’m sorry buddy. I know you really want cheesebread. If I could I would give you some. The only way that I know you get cheesebread is to make it”), he was following me because he felt unsafe and would feel that way until something gave him the feeling of having a sense of autonomy.
Other than the following of myself, this came out in what is described as equalizing behavior. Anything I did, he needed to do the opposite. I turned the TV down. He had to turn it up (he couldn’t figure out how so he muted it and watched it without sound). I got him water, he needed it in a different cup….
The thing is, he was hungry. He wanted to eat breakfast. We had other food he likes and did want but he could not let himself eat it until he felt safely autonomous. This autonomy occurred because while he was insisting that there was cheesebread in the fridge, I told him that I couldn’t find it, I needed him to find it for me. I told him that when he found it I would make it for him. We went and looked in the fridge. There was obviously no cheesebread. I asked where it was and he pointed to his juice that I had already mixed up. I gave it to him and everyone is referring to it as cheesebread(honestly, while we this was happening, I felt an immense sense of relief at finding a solution but also an acute sense of terror that someone might accidentally refer to this “cheesebread” as juice. Why? I know the consequence could be him stopping eating ask together or because his nervous system is experiencing distress around food, he’ll go back to being hypersensitive with food which causes him to vomit often. These are things that are always going through my mind). This freed him to be able to ask for what he actually wanted for breakfast… cornbread with honey and strawberry milk.
I don’t know if this is helpful in any way. I’m aware that you may read it and only see a spoiled brat with a permissive mother. I can only assure that that isn’t the case. Or maybe you’re scratching your head and saying but isn’t that just normal young child behavior… Young children are known for being demanding, after all. Again, I assure that is not the case. This behavior is pervasive. It is in all interactions, all of the time. My son is the sweetest boy you’ll ever meet but you can’t always see that. My son, once comfortable with you (because he is high making otherwise) will argue with everything you say because being told something, even if he asked you to tell him, is perceived as a loss of autonomy. It is a threat. My son, and other PDA children feel as if under almost constant threat. All I ask is that you keep an open mind and be gentle with them. And while you’re at it, be gentle with their caregivers and, you know, maybe give us the benefit of the doubt. We do know our children.
Through Community
I had a dream. It was a few years back and in this dream an angel came to me. This angel told me that if I did not heal I would die young but that I wasn’t meant to. That I needed to accept help, that my healing world require help from others. The angel also said money would be involved but not too worry about that.
Because of the money part of the equation, I had assumed that the help was meant to come from those in the helping professions. While I do still think that’s partly true, I know that isn’t the only help that was meant. Balance is a constant struggle and I require assistance from those around me, both because there are things that I’m not capable of doing for myself and because the little energy I have is needed in my healing process itself. I know I’m not alone in this experience.
So, what do you do when your caregivers are at the end of their rope? When either their life is full with their own tasks of daily living or they overextend themselves trying to help others who may or may not be their responsibility? What do you do?
I can’t speak for others but I feel a tremendous amount of guilt. It is not my fault that I am sick and I am doing my level best to heal but I feel like a burden and there is truth in that. My loved ones will deny that, over and over, but in truth, whether we want to use the word burden or not, my existence causes a hardship for those around me. It does.
Caregiver burnout exists. Mistreatment and/or abuse by caregivers exists. These things are commonplace and as deeply personal as this reality is for me it is not a me problem. This is a societal problem. Any system that requires it’s participants give their all to and rely solely upon it is doomed to fail. We know this. I don’t pretend to have the answer but what I do know is that we are human. We are mammals. We are pack animals. We survive through tribe. Through pack. Through clan, group, family. We survive through community. What ways can we begin to slowly bring our centers back into community? I’d love to hear your thoughts.
On Misdiagnosis
I mentioned recently, that I used to have an official diagnosis of Borderline Personality Disorder with Avoidant and Obsessive Compulsive Personality Disorder traits. I don’t know about you but to me, that diagnosis screams autism.
Of course, it isn’t easy to get an autism diagnosis. The misinformation and misunderstandings by society alone are widespread and it isn’t just society. Many, many, many clinicians supposedly qualified for autism assessment and diagnosis hold these same beliefs. Most clinicians have no training on autism and no idea how it can present.
My being female and not presenting as the “autism stereotype” made it very unlikely that anyone would see my behavior as stemming from autism. Add to that, at the time that I received this diagnosis, I was in a state of extreme burnout and having violent meltdowns daily (or multiple times a day). Borderline Personality Disorder it is.
Now that I know that I am autistic, this brings my former diagnoses into question. Did I ever have a personality disorder (or 3?), or was it all unrecognized autism? I know that some people, after being diagnosed with autism, still identify with their previous diagnoses. They feel it still pertains to their life and mind. I’m not sure that I do.
I currently do not meet the diagnostic criteria for Borderline Personality Disorder although at the time, I did. I never did meet the criteria for OCPD or AVPD, hence the diagnosis of traits. Having just looked up the criteria for their diagnosis, I can say, quite firmly, that the reason they didn’t fully fit is because they didn’t fit at all. The symptoms my therapist was attempting to attribute to the traits of those personality disorders were all autism. So, what about BPD?
Here is where things get a little tricky in my mind. Like I said, I did meet the criteria. I was nine for nine, in fact. Not only that but I related, heavily, to the diagnosis but… I do not anymore.
If I go through the criteria and look at the ways these symptoms impacted my life, I can see how they could have been caused by being undiagnosed autistic and existing in a world not created for or accepting of my natural ways of being. To me, it seems obvious that living in a world that invalidates your very existence at every turn could lead to things like an unstable sense of self, chronic feelings of emptiness, shit, even self harming behaviors… But does that mean that I had a personality disorder? Did the trauma of being undiagnosed autistic cause a personality disorder? If so, where did it go, I don’t have a personality disorder now? Or did my autism present in a way that was similar at a time in my life where I was way beyond my limits? Does it even matter?
The thing is, autism exists physically, it is a difference in brain structure. BPD is just a construct made up of symptoms that have a negative impact on a person’s life and relationships. I could say that I used to have Borderline Personality Disorder and now I don’t. That’s technically true but I think it’s too complex, people are too complex, brains are to complex, life is too complex…I am too complex to be able to ever take a stand that is that black and white.
What I do know is that not realizing that I am autistic until my forties, living life as a seemingly failing neurotypical, has caused significant amounts of trauma (hello, can you say understatement). I do know that I am not the only one (far from it) to be impacted in this way. So, I suppose this comes back to what it always seems to come back to for me. That is the need for better education and awareness around autism and the myriad ways it presents. If you are able to, tell your stories.
What do you think? Did you have diagnoses prior to your autism diagnosis? Do you feel they were accurate or misdiagnosis? What was the impact on your life?
Meh
This morning I woke struggling to breathe, suffocating under a cloud of panic.
I was dreaming that there was a tiny kitten, like smaller then a mouse tiny, running around my house and my cats were trying to kill it. I was panicking in the dream so waking in a state of panic seems appropriate, except that I wasn’t panicking about the kitten. I went straight from dream panic to wide awake with the thought that we need to get gas masks, followed by the need to be prepared in other ways. Given recent events, I’m not surprised that the need to feel prepared was at the forefront of my subconscious.
All of this quickly translated into guilt. How could I bring my son into this world when it’s falling apart? I don’t mean to be all doom and gloom. My beliefs actually aren’t but this is once again bringing up the subject of balance for me.
I’m struggling to find balance in my personal life, especially in the area of being a mom and healing. Like I said, while the world does feel unsafe and we do need to face those things at the root head on, my personal beliefs are filled with faith and hope. How do we find balance in this current culture? How do we know how to best prepare our children for the world we live in? How do we hold hope in the midst of chaos without totally going under?
Trauma is Wild
Woah. I’m sitting in my bathtub, brushing my hair while it has conditioner in it and I’m listening to music. A song starts playing that reminds of a very unstable time in my life, both because of content and the fact that I would have listened to it back then. Unstable more in a relationship way then a just me off the rails type of way.
Anyway, I’m listening and I’m singing and I’m overcome by a feeling if nostalgia. Like I am literally experiencing a longing for that time. Now, there were definitely good times then, life is complex, it’s never all bad but … That is not what I’m feeling longing for. There is some part of me that misses the intensity, the drama of that life. WTF? Trauma is wild.
Having been sick for so long, I’m not surprised by the feeling of missing a time where I felt much more alive. I also had better access to my emotions at that time. Like a lot of people, in attempting to heal my emotional instability, I’ve swung too far in the opposite direction, I’m all bound up. I’m aware of this. I’m working on it. It is interesting that this part isn’t longing for a future where I can feel my feels in a healthy manner but instead a past that was intensely painful. Huh? I think I may need to do some inquiring as to the needs of that part of me. Interesting.