Autism

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.

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?

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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

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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.

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.