Autism

Educated

~ gypsy116toast2001 ~ Leave a comment

I just finished reading Educated by Tara Westover. I’m not really going to review the book, other than to say that it is well written, and interesting. I would have liked more description of emotion but as we’ve discussed before, that’s a me thing. The book is good. I would recommend it. I don’t actually want to talk about the book though. I want to talk about the thoughts the book inspired.

Towards the end she, Tara, has a conversation with her mother where she felt seen, finally. Without getting to deeply into the story (I don’t want to spoil anything), this conversation sparked an internal shift in Tara. Upon reflection, she realized that the shame she had carried throughout her life wasn’t about her life circumstances, it had much more to do with the messages she received about herself, her worth, her identity, through her parents words and actions. Their refusal to accept her for the whole and unique person that she is.

This got me thinking about the weight we carry as parents. The responsibility that we have to our children. And the almost hypnotic power our parents tend to still have over us as adults. I’m not sure we ever fully get out from underneath those wounds.

The chances of my own mother ever fully seeing and accepting me as I am is near zero. I’ve accepted that and that I have to be that source of acceptance and validation for myself. I was going to write that I’m not sure I know how to do that, but no, I am sure that I do not. It’s something that I struggle with constantly and I’m sure will to some degree all of my life.

How, knowing the affect our parents have had on us, do we go about parenting our own children? I understand that it isn’t possible to not cause your child any damage, but I definitely would like to minimize any negative affect my unhealed parts have on my son and maximize the affect of the opposite.

I don’t know. I’m struggling here.

As I’ve talked about before, my son is autistic, PDA profile. I’ve finally (after about two years of searching) found someone who should be able to accurately assess him that I can afford. My hope is that she will be able to recommend appropriate support. Even with support, I’m having a hard time seeing how I can find balance in my life. Balance between his needs and my own.

I’ve recently seen a few videos about a study done on the effects of parenting a PDA child on the parents (link to first video in the series) and I received this comment, “PDA tends to be the hardest parenting, a 110% job”, when emailing about my son’s upcoming assessment. Both of these things were highly validating.

I’m not going to sit here and complain. I am so grateful for my son. It took me twenty years to get him (long story, I’ll save that for another day). He is my miracle and I love him so much. But…In this society, with the lack of support given to any and all parents, how are we meant to not only survive but thrive as parents? To give our children the best of ourselves so that we can stop passing down these old wounds that no longer serve anyone? Please, comment with your thoughts and experiences.

The Hook

~ gypsy116toast2001 ~ 2 Comments

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.

  1. 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.
  2. 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.
  3. How not knowing I’m autistic caused me to live a life disconnected from myself and my journey back home.
  4. 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
  5. 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

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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

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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

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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

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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?

The Unseen

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I leave my house, on occasion.

Upon my return, my dog’s greeting would seem to indicate that either, I am the most important, awe inspiring human being on the planet, or this occasion, my return, is the greatest thing that has ever happened in her life.

I get the same reaction when I get up in the morning. Every morning. It’s like she can’t believe she had to go an entire night without my presence. She wiggles. She dances. She whines if I start to walk away.

I understand that this is what dogs do. When a dog loves someone, they love them with all of their energy. Their entire being. This is typical dog behavior yet, somehow, I have trouble buying it.

When my son was an infant, I often googled (more times than I’d like to admit) things along the lines of – why does my baby love me? Why does my baby love me so much? Why is my baby obsessed with me?

Again, I understand that I am his mom. He’s gonna love me no matter what. The little dude didn’t really have a choice in the matter. Human babies tend to love their mom’s, whether that mom deserves it or not. It’s a matter of survival but …

I had a hard time buying it.

There is some part of me that believes, whole heartedly, that not only am I not worthy of love but that I am expendable, invisible, non existent. Every time some one from my past recognizes me, it blows my fucking mind. I truly believe that I am not memorable.

I can, of course, trace this back to my childhood. I could lay it all out for you, all the reasons I think I came to believe this but right now, I don’t want to. I only want to say that my heart aches for that child. The girl who felt so insignificant in her life and with those meant to love her that she’s carried that belief with her as her foundation of being. My heart aches for her and all of those other children carried in the hearts and bodies of adults who’s still feel unseen.

This isn’t an autism memoir

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My sleep has been restless. I fall asleep, mind clear, but clearly my subconscious is obsessed with my writing a memoir. It seems that until I know the details of what I’m writing, the theme, the structure, my mind will not stop trying to figure that out.

Originally, I though I wanted to write an autism memoir. I’m not so sure that I do. Every memoir that I’ve read on autism is information heavy. You know, diagnostic criteria, facts and statistics and what not. I don’t think that’s the book I’m writing.

I’ve always imagined my book to be more, hmm, emotional. I’ve lived many lives. Most spent grappling with my own internal experience. I feel like that’s my book.

I’m not sure exactly and that’s the problem, it seems. Any memoir that I write will be an autism memoir. There are no stories that belong to me that are without autism. There is no me without autism. It’s not like some parts of myself that are singular in their existence in my life. It is my brain. Autism is the whole of me, but… I don’t think this is an “autism memoir”. If not that, if I don’t have that structure to hold onto, then what?

Confessional

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I have a confession to make. I love my son, like more than I could ever possibly describe. He is my everything, but… Right now…I do not want to Mom, like, at all. And that my dear friends, is causing me to feel like a massive piece of shit human.

Here’s the deal, my recent life circumstances made it impossible for me to care for him in the way that I normally would. Thank everything holy, his dad was able to step in and fill the role that is and has been since my son’s birth, mine. The role of primary parent.

The part of me that feels like a massive piece of shit human wants to tell you that I got used to having less responsibility and I don’t want to give it up. The part of me that loves to beat myself up for everything, even the things out of my control, wants to hang it’s (my…our?) head and wallow in shame, calling myself selfish, self centered, lazy, uncaring, heartless, bad bad bad… Bad mom. The truth, I think, is more complicated.

I have, since my son was born, as is my tendency, given too much of myself. I, mostly on my own and chronically ill, attachment/gentle parent an autistic, PDA child. If you don’t understand what that means, I took the hard road without near enough support, in a broken body, with a child who is “extra”.

Looking back, I would not change the decisions that I made in my choices of how to parent but…I was burnt the fuck out before life just knocked me on my ass. *Sigh*. On top of that, the ass kicking that the universe just bestowed upon me, made a couple of things very clear to me. If I want to heal, I have to put myself first. I have to engage in the activities that bring me joy, peace, and help me to process. I have to invest time in my healing. I don’t get to just half ass try and fit healing tools in on the sly when I steal a moment alone. I HAVE TO. If not, my son won’t have a mom at all.

I wrote recently about how I healed the first time that I had a run in with chronic illness. On my own, in a safe space for the first time in my life, I spent my time learning what I needed (that’s key, what I actually needed) and immersing myself in those routines/activities. This is how I became regulated. This is how I healed.

I’m in a tough spot right now. My son’s father will be returning to work soon. I will have to go back to full time primary parent. And this is where I feel like a selfish asshole. I don’t want to. I feel resentful about it. I think that that actually makes sense though and it definitely doesn’t mean that I am a horrible person or mom. It means that I need to focus on healing and I an unsure of how to navigate this. How is it possible to find balance? It means that I’m scared, terrified really. What if I lose the gains that I’ve made? What if I’m unable to heal I’m this circumstance? What if, and I think this is my biggest fear, what if I don’t make it? And by that, I mean, I either become fully incapacitated or I lose my life and… The part of that that kicks me in the teeth, rips my guts out, stabs me straight through the fucking heart..my son doesn’t have his mom.

I feel like I need to be selfish temporarily,in order to ever truly be what he needs. Pray for me. Send me love. All the good things that might help me to figure out this balance. Or advice? Leave a comment below.

But Everyone Feels this Way

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I was thinking about writers and how it’s easier to publish a book if you already have an audience, and the need to support those that you enjoy and that brought me to the realization that I totally forgot to do a review for Paige Layle’s book, But Everyone Feels this Way. I read it quite awhile ago, so I don’t really remember the specifics but I do remember what I wanted to say.

If you are unfamiliar with Paige, she makes content on social media speaking about autism. I like Paige. I have from the first video of her’s that I came across. She does , however, have a way of sometimes coming across as if her opinion is THE truth. I find that irksome at times but…. I like her. I find her content relatable and entertaining.

That said, after reading her book, I like her even more. Reading her story helped me to reframe some of what I found off-putting. This is definitely one of my favorite memoirs about autism.

Autism presents in such a wide variety of ways… If you’ve met one autistic person, you’ve met one autistic person, so it’s hard to say whether or not anyone else would feel the same way that I do. I think the memoirs people tend to like best are the ones they most relate to but… Other than Drama Queen… This is my favorite.

So, here’s me showing support for Paige. I highly recommend it.