Autism

In the Name of Awareness

~ gypsy116toast2001 ~ Leave a comment

There is so much going on in the political landscape autism wise right now. I feel like I should be writing about it but the words aren’t coming. I think this is for two reasons.

1. The energy just isn’t there.

2. I don’t think I have anything unique to add to the conversation.

The message I’m seeing from all of the autistic content creators that I follow (Instagram, Facebook and YouTube) is the same and I am in agreeance.

In the name of awareness, and in case you somehow may have missed any of this… Here are some topics to Google…

The death of Victor Perez

RFK jr speech on autism “research”

National autism registry (USA)

Anything I’m missing, please let me know below.

Why You Probably Think I’m a Bad Mom, and Why I Don’t Care

~ gypsy116toast2001 ~ Leave a comment

Daddy was making a speedway run.

“Do you want anything, buddy?”

“A donut”

The donut does have sprinkles but it’s frosting? White. This is unacceptable.

I feel my son’s energy change. Watch as his face falls. Tears fill his eyes. I register his distress.

I know what comes next, so what do I do?

I fix it.

I melt chocolate chips and “frost” the donut. I douse it with sprinkles. I do all of this knowing that my son will pick off the sprinkles, leaving the rest uneaten.

I am well aware that the vast majority will see this as bad parenting. I am also aware that a good portion of the population would see my son as spoiled…a brat.

Here’s the thing, my son is PDA. My son has a nervous system disability where something as seemingly small and insignificant as the wrong frosting on a donut is registered by his nervous system as a survival threat. A threat to his very life.

I know that if I don’t allow him to complete the threat response in a way that allows him to feel a sense of safety, that threat will stay in his nervous system. These small, seemingly insignificant threats can add up to big trauma for my son and others like him.

Given the cumulative nature of the effects of these threats on my son’s nervous system, I know that before long my son will be gagging every time he eats, vomiting often, his nervous system in such a sensitive state that he cannot handle food. I will be unable to get him to bathe, possibly for months at a time. His sleep will become restless. Meltdowns will occur daily.

These “small” threats can prevent a PDAer from accessing survival needs. These threats are very real to a PDA nervous system. PDA is a nervous system disability. My son is disabled, so, yeah, I will continue to spend my days accommodating him. I will allow him to use equalizing to come back to a regulated state. Even when it looks ridiculous. No matter who believes me or who doesn’t. Even if you see me as a bad mom.

Sane Amidst Insanity

~ gypsy116toast2001 ~ Leave a comment

Sometimes I forget just how misaligned I am, my thoughts, my beliefs, with the majority of the population. Things that seem obvious to me, people often seem to have never even taken into consideration.

Once upon a time, when I was in my twenties and in therapy, my therapist said something to me along the lines of… It’s hard being the only sane person when everyone around you is crazy.

I am not saying that my thoughts and beliefs are better then everyone else’s. I can’t speak to anyone else’s truth. I can only speak to what feels right and true for myself. But yes, it does sometimes feel that way and yes, yes it is difficult.

Last night, I sent a message to said therapist. The last time I saw her was when I had just moved back from Arizona and was in the middle of what I thought at the time was a massive mental breakdown that led to my former diagnosis of borderline personality disorder. Given what I now know to be true about myself, I believe that while I was in a state of mental health crisis, it was not caused by a mental breakdown or personality disorder but deep autistic burnout and the interplay of trauma with my autistic traits.

During our last interaction, I must have said something about feeling the need to unalive myself because I remember her stating that if I did end my own life, she wanted my then husband to contact her to let her know. On the contrary, should I decide to live, she wanted me to reach out and let her know how my life was progressing. The message I sent was brief. There is so much I could say and even more that I’d probably like to but I’m not sure how to explain my life without explaining everything inside of my head. I’m still feeling sane in the midst of insanity.

I also recently received a message from a high school friend sharing her experiences with her autistic child and advice based on the wisdom her experiences have granted her. Anytime someone reaches out in an effort to help, I am absolutely bowled over with gratitude. The confirmation and validation of my belief in the basic good heartedness of most people sustains me when all evidence seems to the contrary. As welcome as this advice is, it also highlighted the sharp contrast between my experience and my beliefs with the beliefs of others.

Most often, I feel like I occupy some sort of no man’s land. My views not aligning with anyone but my self. Never quite agreeing with any of the consensus views and instead falling somewhere in the middle. Always seeing complexity where others see certainty. This can be a lonely place to live.

I often find myself face to face with the defensiveness of others. My views feeling like an attack, something to take personally, something to take offense at. The space that I occupy is not one of judgement. Do I sometimes believe that others views are wrong? Of course I do, that’s why I hold the view that I hold, it is what feels right and true to me. Just as often, I see the other view not as wrong but incomplete or just not right for me. What is right and true for you and your family is solely up to you. It is not my place to decide that for anyone or to make judgements about that decision.

As an example, my thoughts about education in this society are such that I could never, never, attend university and I will speak at length to why. My sister, on the other hand, is about to complete her Masters in social work. Do I think that she made the wrong choice and should not be attending university? Absolutely not. Not because I believe that the way education works in this country is any better for her but because I whole heartedly believe that she is meant to be a therapist. She is in perfect alignment with her path, her purpose. It does not change my views about education.

Often when people hear me talk about my views, such as these particular ones, they make the assumption that I am insulting their choice. That I an judging them for choosing to go to university (or whatever the topic may be). I am not. I may hold deep judgements about the systems of power in our society and the choices that are forced upon us but I have no judgement for the individual human making those choices.

That said, being that my beliefs are so far outside of the norm and being that I am often immovable in my stance towards those beliefs, I often fear speaking them. This may be my most fatal flaw. I will make myself small in order not to cause others discomfort. I am trying to unlearn this.

What about you? What are you trying to unlearn? Anyone relate?

Officially Autistic: Awareness vs Acceptance

~ gypsy116toast2001 ~ Leave a comment

A few days ago, on autism acceptance day (though I did not realize this until after the fact), I became officially autistic. Of course that’s not true, I was already autistic. I have always been autistic but that is how it felt. I feel like I no longer have the need to qualify the fact that I am autistic with “self diagnosed at this point…”, as if self diagnosis isn’t valid. Unfortunately though, to many it isn’t valid and even though I’ve known… I have known that I am autistic for quite some time now, claiming it felt disingenuous. Imposter syndrome is real y’all.

So…on autism acceptance day, I had my formal autism assessment and became formally autistic and now no one will ever have cause to doubt my autisticness, right? If only that were truly the case.

I will not receive my actual report for another week or so but the psychologist did tell me her thoughts on my diagnosis… C-PTSD, Autism, and ADHD. She also mentioned dissociation, alexithymia and giftedness. When my mom asked what the psychologist had said, that is what I told her… C-PTSD, autism, ADHD… And my mom said ” you don’t have any of those”. The following day when I asked my dad if Mom had told him that both my son and I had received an autism diagnosis, he replied “yeah, she said you said that” and walked out of the room. So, yeah, there’s that.

Being that April is autism month, I’ve seen so much debate over whether that should be qualified with awareness or acceptance, i.e. autism acceptance month or autism awareness month. I agree that acceptance is important. Awareness speaks of just that, an awareness that we exist, while acceptance speaks to accomodation, it speaks to change, it speaks to the possibility of inclusion, the possibility of healing but…. As much as acceptance is needed, we, as a society aren’t ready to drop the need for awareness just yet.

It isn’t that my parents (and most people including countless doctors and even professionals supposedly qualified to diagnose autism) think that I’m (and so many others are) not autistic because they’re just being assholes (although, I am aware that that can be a problem with some people too). They aren’t able to believe me because of a fundamental societal misunderstanding about what autism is and the myriad ways that it can present. This is a problem of lack of accurate information and education.

I want to say that it’s amazing that it took 44 years for me to receive an accurate diagnosis. I want to say that my differences have been apparent my entire life and it’s amazing that I went under the radar for so long. The truth is though, it isn’t amazing and I didn’t go under the radar. Instead, I collected mental health diagnoses like clothing that didn’t quite fit, that sat as clutter in the closet of my mind.

I’ve been viewed as sick and broken my entire life, so… I lived as if I were sick and broken and in need of fixing. Try to fix myself, I did. I dedicated my life to fixing myself. I suppressed all of the parts of myself that were natural and easy and authentic. All of the parts that I like about myself. The parts that make me me. All in the name of fixing myself. I fixed myself until my self was completely gone and all that was left was actual sickness, brokenness. This is why I’ll argue that both awareness and acceptance are equally important. Without awareness, there can be no acceptance. Unfortunately, as a society we are woefully unaware.

Congratulations, he’s autistic… You wanted support? There is none

~ gypsy116toast2001 ~ Leave a comment

Last night, I dreamt that I had breast cancer. The message in this dream was very clear and the same message I have received in various forms over the past few years. I need to focus my time and energy on myself, on the things that regulate me, if I am to survive. I’m order to do that, I need more support.

This past week, after searching for almost two years, my son finally had his autism assessment. In case you are not aware, it is ridiculously difficult to find a professional capable of accurately diagnosing autism if you don’t fit the current stereotypes, i.e. you can make eye contact, are empathetic, or “too” social…PDA adults and children are notoriously hard to diagnose.

The assessment itself went well. The psychologist spent the majority of the time talking to me, asking me questions. The rest was spent asking my son questions while she watched him play. While the whole thing was dysregulating for my son, he did really well and was able to engage as needed.

I won’t receive the report for the assessment until I’ve fully paid for said assessment (a few months) but the psychologist indicated that she agreed with my evaluation of my son, that he is autistic with a PDA profile. She then began a bit of an explanation of the report that I will receive and asked a few questions about my indicating that I was hoping for recommendations for support.

On one of the forms that I had filled out prior to the assessment, I explained that I was looking for recommendations for therapists that are able to work with PDA children. Due to the nature of the PDA nervous system, most therapies recommended for autistic children are not appropriate for a PDAer, they only make things worse as they threaten the child’s autonomy. I’m in need of support. Are there ways that I can better support my son with eating? Potty training? And possibly more importantly, if the information about how to best accommodate my son is coming from a professional and not myself, I feel it will be better received by the other adults in my household and that would hopefully lead to more support for both my son and myself.

The response from the psychologist? I’m sorry, I know this is not what you want to hear but there really isn’t any support. There aren’t any local therapists that are able to work with a PDA child in an appropriate and Neurodiversity affirming manner. She said that she will double check with her boss but…😬🤷 Her recommendation was to find a good therapist for myself (have one) and join online support groups (already joined). I don’t think I even need to explain how fucked up this is. So, not only am I not receiving enough support in my personal life… Everyone who supports me is tapped out themselves, they need more support. But also, there is no support available on a professional level?

This blog is not incomplete because I don’t have the desire to work on it. It has been under construction for over two years because I lack the time and energy. Between my illness and my son, there is nothing left. Even as I write this now, I’m sitting in the bath tub, stealing time from my very important for my healing meditation routine. If we aren’t able to look to the so called experts for help with our children’s (or our own) disabilities, where are we meant to turn? If society is set up in a way that drains us all so that we are not able to support each other, what then?

My hope is that with spring and summer coming, and my son’s love of gardening, I will soon have more space and time. But what about when winter rolls around again? This is not sustainable. Not for myself and not for so many others. What are your opinions? How can we form community that allows for mutual support? What ways are we able to lessen the load on ourselves and others as is? As always, comment below.

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.

Pervasive Drive for Autonomy

~ gypsy116toast2001 ~ Leave a comment

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

~ gypsy116toast2001 ~ Leave a comment

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.