Author: gypsy116toast2001

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?

Meh

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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

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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.

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?