Mental health

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

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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

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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.

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.