Autism

Realization…unmasking as the key to healing

~ gypsy116toast2001 ~ 1 Comment

I’ve just had a realization.

I’ve been sick for almost 12 years but this is not my first run in with chronic illness. I was sick first, when I was about 19. I was only sick for a year or two and while debilitating, I was not as sick as I have been this time.

The causes of chronic illness, in general, are complex. My situation is no different and I’m not going to go into all of that in this post. What I do want to talk about is my “recovery”.

At the time, I attributed my healing to diet changes. Other than rest forced by the illness and a few supplements (I can’t remember any specifics other than a prenatal multivitamin. That was my doctor’s advice. Rest, take a prenatal and, you know, don’t be stressed). If you’ve read any of my recent posts, you know that I am doing Primal Trust, and that I believe nervous system regulation to be key to healing. Not that I think the diet changes and supplements had nothing to do with my healing, I am positive that they contributed but… What I just realized, is that it was nervous system regulation that was the key.

This… This all comes back to me being undiagnosed autistic. At the time of my healing, I was no longer in school and had just moved into my own house. My ex husband and I were in the best place, relationship wise that we ever were. And I… I had a lot of space to experiment with just being myself. I, my dear readers, was unmasked for the first and dare I say, only time in my life.

My days were spent doing as I pleased with no fear of repercussion. I got up, took a bath, exercised (as I became able), sang (I’ve recently realized that this is my biggest stim), danced… I spent all of my time with my animals or with my then husband, who, at the time, I trusted. At night, we watched movies and I engaged in my special interests.

This is not a life that is supported by the society that we live in but it is a life ideally suited to me. Add in abundant time in nature (which hey, guess what? I had my own home with a pool, I was out in the back yard a lot in the summer) and I’m in heaven. Of course I was regulated. Of course this was the only time in my life that I’ve ever felt truly healthy.

My task then, (and this really is THE task of all neurodivergent folks (and honestly, of all people, it’s just that it comes glaringly into focus for those of us whose needs are further outside of the societal norms), isn’t it?) is to find a way to build a life that suits me within the confines of this oppressive society (all the while, attempting to effect change in any was possible). A life that prizes space and creativity and regulating movement/sound and nature and deep deep dives into the topics that feed my soul…

This is no small task. All the more reason to keep talking about our needs as autistic humans. This is integral to our health, to our very existence. This is essential to a healthy society as a whole.

Have you the courage to change?

~ gypsy116toast2001 ~ Leave a comment

I was listening to music on YouTube Music. Just a random playlist that is supposed to include all of my tastes (YouTube Music does a pretty good job diversifying my playlists, that’s why I use it, but it definitely does not include all of my tastes. I find I have to actively find something and listen to it before the genre is included, as opposed to just including all of my liked music), and the song Courage to Change by Sia played. I found myself annoyed.

If you aren’t aware, Sia received a lot of backlash, from the autistic community in particular, over her movie Music. Criticism includes her decision to use a non autistic actress for the role of Music (who is an autistic character), the portrayal of said character being inaccurate and coming across as a caricature, Music’s character being used as a prop to support other characters stories, rather than having a story of her own, and the depiction of prone restraint (which is dangerous and can result in death) used as the way to handle Music’s autistic meltdowns.

I agree, the movie is highly problematic. And if you, or anyone feels the need to stop listening to Sia’s music on that basis, I get it. I, however, do not. Personally, I’ve found many of Sia’s songs emotionally cathartic and therefore helpful, for me…. But now I can’t listen to this song without feeling annoyed. I mean, I didn’t know Sia, have you the courage to change?

From an interview that I recently saw in a video from Meg, of I’m Autistic, Now What?, it appears that Sia may have deluded herself into believing that the criticism was not real. That it stemmed from crazy conspiracy theories 🤷 If that is the case, it doesn’t seem an apology or promised changes to the movie (such as a warning or removal of the restraint scenes) is forthcoming.

I am annoyed with my annoyance. What do you think? Is it possible to remove the artist from the art? Or should we distance ourselves from the art itself when the artist is problematic in some way? Please comment, let me know your opinion.

Autistic… Just a traumatized INFJ?…No

~ gypsy116toast2001 ~ 1 Comment

Last night, while watching videos on YouTube, I watched a video by Irene at The Thought Spot. Irene shared a comment that she received. The comment read “Hey just wondering how autism shows up for you? You seem very articulate and self aware and have deep empathy. I’m wondering if you perhaps have the INFJ HSP CPTSD COMBO that can look and feel a bit like autism and or ADHD but when we get our nervous system regulated AND our attachment traumas healed we would not qualify for an autism diagnosis ❤️”

Ok, so Irene does a full assessment of the comment, line by line, in her video. You can watch that here. Since she does such a thorough job, I’m not even going to get into the implication that if you are autistic, you can’t be articulate, self aware or have deep empathy (🙄). I only want to touch on my reaction, my internal response to hearing this comment.

I’ve written before that I no longer question whether or not I am autistic. I know that I am. I’ve done enough research, I’ve had my autismness validated by an autistic therapist and I just know, man… My life finally makes sense. I am autistic.

At first, for a long time, I experienced an almost panicky sense of imposter syndrome. Even though I knew…I needed outside validation. What if I was wrong? I can’t claim something this huge and be wrong. That is why I am on a two year waiting list to have an official assessment. Even though I no longer question it and I no longer feel like I need that outside validation, I intend on going through with the assessment so that I will (hopefully…) come up against less backlash from the outside.

Even though I KNOW, and I do know, this comment threw me for a bit of a loop. Imposter syndrome and fear of being wrong struck me hard, briefly. I am an INFJ. Once upon a time, I identified as an HSP, and Lord knows I am highly sensitive. C- PTSD…check. I also know that my nervous system is dysregulated, that is why I’m doing Primal Trust (I do think that most, if not all autistic people would benefit from nervous system regulation work. We the in and process so much information, it serves that better regulation of our nervous systems would help with “symptoms” of autism but autism is not the “symptoms” it is a difference in brain structure). Attachment traumas….again…. check.

After breathing through a bit of panic, I started thinking about it. Irene mentions, in her video, that she was actually at her healthiest when she was diagnosed with autism. Thinking about myself…same. I am most definitely not at my physically healthiest but mental health wise, yeah, I am. I may still have work to do on my attachment wounds (and yes, definitely my nervous system) but I’ve already done a lot of work. Irene says that she believes that if she had sought an autism diagnosis when she was less mentally healthy, she would have been misdiagnosed with OCD and BPD. That is what happened to me. My official diagnosis, back in the day, back when I was very unstable, was Borderline Personality Disorder with Avoidant and Obsessive Compulsive Personality Disorder traits. Healthier does not equal no autism.

The more I thought, the more irritated I felt. My personality type and my trauma has nothing to do with autism traits that have present since my childhood. Especially, if they were present before enough trauma to cause C- PTSD, like the fact that I started speaking abnormally early (first word four months, sentences before one year). My personality type and trauma also has nothing to do with my father (my dad is an INTP) or the much of his family that, now that I know what I’m looking for, seem clearly autistic to me.

Then there is my son. My personality type and trauma does not account for his hand flapping and other very obvious physical stims that have been present his whole life. It does not account for his damn near all encompassing demand avoidance, or his use of echolalia, his food sensitivities, his tendency to hit himself when frustrated, or constant vocal stimming…

It’s funny, this comment, which was meant to be invalidating of Irene’s experience, diagnosis…life, actually ended up reinforcing what I already know that I know. Which is that I an autistic, as is my son. It also highlights just how important autism awareness is, like awareness spread by those who are actually autistic. The misinformation is…*sigh*…it just is….

I will continue to do my part and speak about my experiences. If you are able, I ask I that you do the same.

Manic Pixie Dream Life

~ gypsy116toast2001 ~ Leave a comment

I saw this meme on Facebook the other day and it got me thinking.

Looking at this through the lens of my life has brought up some things for me. Throughout my life, I have struggled with my ability to connect with others. This is a varied and complex subject, I only want to go into one facet of that currently.

I have always found it easiest to connect to those that I have been in intimate relationship with, i.e. those I’m having sex with. Other than the handful of people that I have been close to for various other reasons…No sex = no connection…

I’ve always assumed that this stemmed from issues relating to early childhood sexual abuse and, you know what? It probably does to some degree but… I’m thinking there’s more to it than that.

I’m thinking at least part of this is related to a form of safety that I felt in these types of relationships. Men were often smitten with me for the very traits that caused most others to actively dislike me…To talk behind my back (and sometimes in front of me, like I was not even there) about how weird I am, how annoying, creepy, odd..unlikeable I am, often leaving me feeling ostracized and isolated even while in the presence of others. With the men that I was “sleeping” with, I felt able to be myself. No need to mask, my strangeness was celebrated. No wonder I felt a connection, right?

There are many articles (like this one here) about the manic pixie dream girl trope and how it is harmful to autistic women and romanticizes the infantilization of autistic traits. As it’s been well written about, I don’t want to go into detail about that here but… I wonder, was this what was happening in my life? While I felt some semblance of safety in being able to express myself more authentically, was the attraction to me actually more of a reduction of my essence into a harmful stereotype? God knows those relationships did not turn out to be healthy for me. What do you think? Is this meme contributing to that stereotype?

Regardless of how I may have felt, I’m not sure I was actually seen in any of those relationships, other than for what I could do for the other, how I made them feel about themselves… I’m curious, is this a common experience for autistic women (especially undiagnosed)? Or is this just me? I’d love to hear your thoughts, your stories.

While pouring my son cereal…

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I know that I have been MIA. I’ve had a life circumstance that I have not wanted to discuss publicly. I am still unclear on when, if ever, and what, if anything, that I will want to share. What I will say, is that I’ve had a recent hospital stay (nothing for anyone to worry about, with any luck the situation has now fully been resolved. If you would like to send any kind of positive energy that that is in fact the case, it would be appreciated) and it’s got me thinking.

I’m feeling curious about communication. How much of what a person “hears” you say is only their interpretation? How much is what they actually heard you say? Your actual words?

During the interview with the doctor at the hospital, the one where they take the “history” of the presenting problem, I had mentioned getting my son breakfast. While looking through the after visit notes in MyChart, I saw that the doctor had written that I had said, “while pouring my son cereal”. I most definitely did not say that. My son has never even tried cereal. That is something that has met full on rejection at anyone’s suggestion. What I did do was put peanut butter and syrup on a chocolate pancake (Kodiak cakes) that his dad had just finished cooking and mixed up his electrolyte/multivitamin/magnesium/mineral concoction that we refer to as “juice”.

There were several other discrepancies too but none that stood out as so blatantly not what I said. I’m not upset about it, it’s not the doctor’s fault, this is how brains work, right? She heard getting breakfast, getting breakfast to her means cereal, in her memory her brain translated my words into pouring cereal, yeah? But it is a bit disturbing.

As someone who has been severely mistranslated in the majority of conversations I’ve had over my life (I’m not joking, nor being hyperbolic. If I’m not talking to someone who is very close to me, there’s a very good chance that I will be misinterpreted), I wonder how much of what we humans hear other people speak is our own translation? Also, I wonder if this is something that neurotypical humans are particularly bad at? Or maybe it relates to the double empathy issue? Like are neurotypicals more likely to mishear, i.e. hear through they’re own experience, a neurodivergent human? Vice versa? How do we take care not to misinterpret by interpreting through our own memories? How do we actually hear each other? Is it possible?

Thoughts? I’d love to hear them in the comments.

Progress Report

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I am aware that I dropped my mom’s being in the ICU here and then disappeared. For anyone who may have read that post and/or may be concerned, I wanted to let you know that as of yesterday, she is home. Her hospital stay was one complication followed by another and I have had and still do have my reservations about her being sent home. I’m of the opinion that she would have been better served by being admitted to a rehab facility temporarily before coming home. To say that it’s been stressful is more than an understatement. As of right now though, she does seem to be doing alright. She is weepy, in an exhausted, I’ve barely slept in two weeks but grateful kind of way, but she’s doing fairly well.

Since I’ve been up, she’s told, through tears, how grateful she is for me. She’s done the same with my partner and says when she talks to my sister, she’ll tell her the same. I bristle, unsure how to react, every time she does this. I’m not used to praise or any kind of positive acknowledgement of my existence coming from my mom. I’m used to something more akin to criticism, disapproval, judgement. I want to encourage this positive development but it’s uncomfortable and you know, I don’t trust it. We don’t have that kind of relationship. I don’t know how to respond.

I’m not doing great, in general. It’s hard to explain. COVID-19 has once again left it’s mark. I feel the same way that I did after I had it the last time, only not as intense. Last time, I couldn’t move, everyone had to help me. This time, I technically can do things for myself, so I do. I don’t think I actually should. I think my body needs far more rest then it’s getting. The people around me aren’t jumping to help me. They see me up and moving about and assume I’m fine. The problem though, really, is me. If I can technically do something, I do it. There isn’t enough energy to go around. I won’t ask for help.

One last thing. Currently, I see two therapists weekly. Therapist number one for trauma. Therapist number two for autism related concerns. I cancelled my appointments with both of them the past two weeks. I’m contemplating cancelling again. I’m also contemplating telling therapist number two that I need to take a break for awhile.

I don’t know how to explain the effect that appointments have on me. My entire body becomes both tense and activated. That alone is exhausting. On top of that, sleep becomes almost impossible after a session. My mind wants to obsessively follow every thread of conversation that was had. I can’t stop or even slow the thoughts. I’m exhausted. I don’t know that two to three appointments a week is sustainable right now. I don’t have the freedom to rest enough to make it feel doable. I’m just so tired.

I’m autistic, yo!

~ gypsy116toast2001 ~ 3 Comments

I recently finished reading The Autistic Survival Guide to Therapy by Steph Jones.

Man, reading this book was like reading about my life. Like, hey Steph, are you sure you weren’t a fly on the wall in like all of my therapy sessions, with all of my previous therapists? Memory after memory kept coming back. I wish that I could say that they were good ones, but….

Unfortunately, they were more along the lines of that time my well meaning therapist would stop interacting with me in conversation until I made eye contact. Her assumption being that my lack of eye contact was shame based. Nope, I cannot find words, verbalize language, when I’m doing something other than speaking. That definitely includes trying to make eye contact. Or how two separate therapists restricted my use of the phrase “I don’t know”. Again, this was assumed to be shame based or a form of avoidance. Nope, I literally did not know… Their questions too vague and open ended. I need specificity. Come on now, I’m autistic, yo!

It brought back all of the ways that therapy had failed me. All of the ways that I thought that I had failed at therapy. After more than a decade of failed attempts, with at least 6 separate therapists, I assumed that I was not meant for therapy. That there was something so wrong with me that no matter how hard I tried, I was destined to fail.

Recently, I did decide to try again. I’ve been back in therapy for probably getting close to a year. The reason being that my naturopath recommended EMDR. If I was going to go all in on this healing physically thing, I needed to give it a shot. That along with this fear that I had. As much as I wanted to heal, who would I be on the other side? So much of my identity is tied up in being sick. Who am I? Did I ever know?

Enter autism. My missing piece. I don’t think I want to get into how I discovered that I am autistic in this post, it’s going to be long enough already. I’ll save that story for another day, but here’s what’s important to know right now. Even though I’ve known for almost a year that I am autistic, it’s been a struggle to accept that (again, reasons for that, another day, another post).

I’ve spent more time then I care to recount going back and forth in my head over the validity of the idea of my son and I being autistic. At this point, I no longer question it. I am autistic. So is my son.

While I am on a waiting list for a professional assessment right now, in the mean time, I am seeing a therapist who is also autistic. They have confirmed their belief that I am autistic. This along with all of the research I’ve been doing has been extremely validating. Honestly though, I didn’t get to full acceptance until reading this book. That is how spot on it was regarding my experiences with therapy. It highlighted so much of my life that I was finally able to say, yes, without a doubt, I am autistic.

Here’s the thing though… I already knew… I always knew. I just didn’t know what it was that I knew. I can’t count the times that I’ve tried to explain it to someone… “Yes, I struggle with anxiety/social phobia/depression… But… There is something else”. I’ve said that so many times it makes my head spin thinking about it. I didn’t know what that something else was but I assumed it was the thing that was broken in me. That if I could figure that out and fix it, then I would be able to function like everyone else. Then I would be healed.

Had I understood that it wasn’t something that needed to be fixed. In fact, it’s not something that can be fixed, but instead my neurology and there’s nothing wrong with that. There is nothing wrong with me. I may have been able to save a lot of pain. For myself and those around me.

If I had gotten a diagnosis as a child maybe I wouldn’t have used an eating disorder to feel some kind of control over my life. Maybe I wouldn’t have turned to drugs and alcohol to as a cover for my extreme social anxiety. Maybe the social anxiety would never have gotten so bad, had I known there was nothing wrong with my way communicating and that I didn’t need to change it in order to be enough. Maybe I wouldn’t have pushed myself to the point of burnout and self harm and suicide attempt or multiple daily meltdowns, had I known.

Maybe, maybe not but… I whole heartedly believe that had I known that my way of being in the world was not wrong, only different, I could have found a way to accept myself. If I understood that I am not neurotypical and there was no amount of healing that would change that, I could have found a way to live a life that took my limitations into account and focused on my strengths. Perhaps I could have thrived instead of fallen so ill.

Education about autism and it’s myriad presentations is important. Diagnosis is important. Listening to autistic people and their experiences is so important. As a society, we are failing so many people like myself, people who fall though the cracks. Keeping this conversation going and sharing our stories is important. I invite you to share yours, as well.

Can’t, not won’t

~ gypsy116toast2001 ~ Leave a comment

PDA (Pathological Demand Avoidance) mom rant incoming…

When my son and I wake up each morning, we spend some time in bed, cuddling and talking, before we get up to start the day. This morning, I mentioned that today was going to be cooler. My son’s immediate response, “no, it isn’t”. I started to explain a bit but was again hit with immediate denial and a bit of emotion.

“Ok, baby. I thought it was but I guess I was wrong.”

Period. End of conversation.

We go upstairs and my mom mentions the weather.

“It isn’t cold” Anger. Panic.

Grandma proceeds to push.

“Alright Mom, drop it.”

She knows he is PDA. She understands what this means. She continues to push. She needs to be right. It is in fact cool outside.

I snap and yell at her.

Why are we arguing with a four year old, period. A four year old with a nervous system disability….

PDA isn’t easy for caregivers but… It’s much harder for the child experiencing it. Every choice we make as caregivers either activates his nervous system or accommodates it, helps him to regulate. He doesn’t get a choice. He is just constantly in fight or flight.

There are decisions that are difficult to make. When and how often to push for him to take a bath, change his clothes, try a new food… But this… This was not one of them.

It is cool outside. I know this. My mom knows this. Accommodating a four year old with a nervous system disability by stating they opposite? Not a big deal.

I really hate living with other people.

Traumatic Therapy

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I sent this email to a former therapist of mine earlier…

“Hello, 

I know it’s been some time since I was in therapy with you but I’m feeling  the need to share with you a couple of recent revelations that have taken place in my life. I feel that knowing these things prior to engaging in therapy would have been helpful, and I wanted to share on the chance that they could possibly be helpful if you encounter similar clients in the future.

In the past couple of years, I’ve come to discover that my chronic illness was in part caused by chronic exposure to toxic mold. I’ve been diagnosed with mast cell activation syndrome. You had insinuated time and again that if I did more, I would be able to do more. I now have a four year old son. Raising my son has forced me to do a lot more and I became more and more unwell, the more that I had to do, until I ended up in the hospital. Without the mold piece I was never going to be able to progress further with my health. I’ve been out of the mold for about a year and a half and I am just now seeing real improvement. I’m able to eat regularly (not every few hours and through the night) and am beginning to tolerate heat a bit more. 

The other thing, I’ve recently been diagnosed with ASD. After realizing that my son was displaying some autistic traits, I did a lot of research and realized that it was likely that myself and many members of my family are autistic, prompting me to seek assessment. I don’t have a lot to say about this other than that I can now see how a lot of issues I experienced in therapy with you were due to my being undiagnosed autistic. It may benefit you(and most clinicians) to do a little research in order to gain a better understanding of autism and the myriad ways it can present. 

Thanks for you time,”

This therapist was incredibly helpful when I was working towards leaving my then husband. After that, not so much. Therapy with this therapist actually became harmful to me in many ways. This is just a reminder to anyone, if something doesn’t feel right to you in therapy, listen to yourself. You know you best. This is especially important, I think, for autistic people. If you have a non autistic therapist and they’re trying to treat you the way they would someone who is neurotypical, it very well may do you more harm than good. Look out for yourself. You matter.

Judgment Day

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I feel…. Fuck, I don’t know what I feel but it isn’t good.

I spent the day at my sister’s. A cousin of mine was going to be there with her children. The youngest two are near my son’s age. The older being six months older than my son and the younger a year and a half younger. The kids went downstairs to play, my son included, while the adults stayed upstairs. From the sound of things the other kids behavior wasn’t the kindest. They were hitting my son with balls, he did not like it.

My child prefers the company of adults and older children. This, I’m sure is at least in part due to it being what he’s used to. He was born right before the world shut down. He didn’t have any exposure to anyone outside of my family (me, his dad, my parents, sister and nieces) for about the first year and a half of his life. After that, his exposure has been limited. Illness doesn’t lend itself well to a lot of socialization.

His encounters with children his age have been few and he’s mostly either ignored the other children in favor of the adults in the situation or stayed mute while following the other child and letting them give him instruction.

I know that this is in part because I haven’t provided him with many opportunities to engage with children his age. I also know that it’s in part autism.

I wasn’t ever truly bullied at school growing up. I mostly stayed out of way, hidden. There were a couple of incidences with girls who were in my friend group (aka the other friends of my only actual friend) where they weren’t very nice but mostly behind my back. They just didn’t like me. I was weird. This was echoed in the time spent with my mom’s side of the family. I was quiet. I was awkward. I was the weird cousin and I wasn’t treated too kindly.

I’ve read enough experiences of other autistic people to know that this is how childhood goes for many of us. We’re treated unkindly at best, severely bullied at worst. It doesn’t matter what we do, mask, hide or actually be ourselves, other children see us as different… Not the same…weird.

This is the part where I don’t know how I feel, or I’m feeling a confusing mixed up jumble of things. If I had provided my son with more opportunities to socialize with children his age, would he be less awkward with them now? Would I even want him to be? I don’t want him to be anything other than his weird and wonderful self but… I also don’t want him to suffer unduly.

I don’t know. Discovering that I am autistic has helped me to realize many, many things about myself and my life. One of the most important being that a lot of the things that I like most about myself are because I’m autistic. I’ve spent so much time mutilating my sense of self, attempting to cut those parts of myself off in order to make myself more palatable to others. There’s nothing wrong with the way I was to begin with and I wish I had known that. There’s nothing wrong with my son. I wonder if the problem lies more in the way other children are socialized than the way my son has been…My son was anxious but he made his best attempt to join in and he got the weird kid treatment. Maybe we all need to look at the judgements we’re making and try our best not pass them down to our kids and talk to them about the unfair judgements being made around them in our society.