Category Archives: Anxiety

Why I Run

I have been an active runner for 27 years. We hear about the benefits of running, such as running adds years to your life, that it helps you sleep better, that is helps you lose weight, and keep it off, and that it improves mental health, and reduces depression. These are all great reasons to become a runner, and reasons that started me running, but these are not the reasons that have kept me running. 

My mother has often told me the story of when I was around two or three years old I would take off running. At the time, my family lived in an old farm house on some property in the country. According to my mother, I would take off running through the long grass and wild flowers with our German Sheppard following and me giggling and laughing the whole time. My mother has told me multiple times how scared she got when I would run, because she couldn’t catch me, and how she thought me laughing was at her expense. I have no memory of this time, but I have seen photos of the property. Even thinking about it results in my body aching to run in those fields. This tells me that I wasn’t running and laughing at my mother’s expense. I was laughing because it felt so good to run.  

I am 45 years old now. I have gone through two complicated pregnancies that left me on bedrest for months. I have had joint problems for as long as I can remember and have been through physical therapy ten times since I was 14 years old. I have a very long reoccurring injury list involving my connective tissues. At 18, I was told if I let myself get out of shape, I would lose my ability to walk. At 27, I suffered a major medical trauma due to complications with my second pregnancy. I was almost paralyzed, and even after 18 years, I am still bleeding internally. Luckily, my son was born healthy. My body gave everything it could to keep him alive until term. 

At 37, I was told the only thing holding my body together anymore were my muscles. My bones are essentially floating. I am more like Gumby and less like Elastic Girl. I have been in chronic pain since I was a teenager and the pain has only worsened over the years. On 1-10 pain scale, I operate daily at about a six. My pain is typically like fuzzy noise in the background. I know that it is there, but I have adapted and learned ways to keep functioning. There are days that my pain is at an eight. When this happens, I am forced to take notice of it, slow down, and rest.  If my pain continues at an eight past three weeks, and none of my pain management strategies are working, or if my level jumps higher, then I know I need to go back to the doctor.

I have Ehlers-Danlos Syndrome. I was born with it and there is no cure. My body can’t make enough collagen to bind my cells together properly. Due to my sensitivity to pain medication, including any medication that affects the chemistry of my brain, I am unable to use medication to manage my pain. I am allergic to narcotics, otherwise known as opioids. I receive no benefits from these types of medications. My pain management regiment consists of rest, ibuprofen, ice, and many different braces that not only support my ligaments, but also provide compression to areas where my tendons have degraded. Ehlers-Danlos Syndrome has also affected my connective tissues that support my organs. The Volcano is Awake was my attempt at telling my story about my medical trauma. My writing is chopping, because I was crying as I wrote it. I am still on my journey towards healing. One day I may even be able to fix my writing, but I am not to that point yet.

I love to run. Running helps ground me when my anxiety is racing. Running helps me release tension so that I cry. I run in rural areas so that I can scream at the trees. Trees are very understanding. I also run to keep myself out of a wheel chair. Running keeps my muscles strong. My physical therapist doesn’t even me to stretch, because I am already limber and I need every bit of stiffness I can get to help my muscles hold my bones in place.

Research shows that there is an overlap between people with Ehlers-Danlos Syndrome (EDS) and autism. This doesn’t mean that all autistic people have EDS. These are coexisting conditions and can exist on their own in individuals. However, this overlap is certainly true in my case. I also have thyroid problems and autonomic nervous system issues. These two conditions overlap with EDS as well. According to a study done by Kindgren, Perez, and Knez (2020), “Hypermobility spectrum disorders (HSD) and hypermobile Ehlers-Danlos syndrome (hEDS) are both characterized by generalized hypermobility, in combination with pain, affected proprioception, and pronounced fatigue. Clinical observation indicates that behavioral problems, hyperactivity, and autistic traits are overrepresented in children with those conditions.”

For additional information, please go to The Relationship between Autism and Ehlers-Danlos Syndromes/Hypermobility Spectrum Disorders.

What does this mean for that little girl who giggled and laughed as she ran through the fields and had no idea at all of what the future would hold for her?

It means that I have been autistic all my life even though I wasn’t officially diagnosed until I was 36 years old. It means I have always had EDS even though it wasn’t officially diagnosed until I was an adult and had already started accumulating a long list of injuries. It also means that I have had a love of running since before I can remember.

Running helps me feel free, like I am flying. When running, all my senses seem aligned allowing for calmness to settle in. While running, the overwhelming world that I live in seems to drift away and is replaced with the feeling of the breeze on my face, the ground beneath my feet, the steadiness of my breathing, and the sound of the birds and the wind through the trees. Running is how I meditate. Despite all the barriers I have faced in my life, all the pain I continue to endure, I have always found ways to keep running. I am a runner and will continue to run for as long as I can.

   “Truly, I love running. It’s who I am. It’s a part of me. Even if I can only run for 10 minutes, I feel whole and happy. And if everything else is falling to pieces, I go for a run, and I feel like things are going to be okay.” Johanna Olson
 For Many With Autism, Running Is a Sport That Fits (Video) – “As opportunities for training and racing grow, runners such as Tommy Des Brisay are seeing results they never anticipated.” – Runner’s World

Where do we go from here?

Content Warning: Mentions of functioning labels, abuse, and trauma.

Have you been newly diagnosed with a disability?

You have rights!

Do you know what these rights are?

A Guide to Disability Rights Laws

The road that led to these rights was long and grueling and there is still much to be done. Sure, people with disabilities have rights, but that doesn’t mean those rights are going to be upheld in the many interactions that occur throughout a person’s life time. Learning that you have a disability is only one step in a very long and potentially very difficult journey towards finding self-acceptance, learning self-advocacy, and developing self-determination.

I was born with an invisible disability. This invisible disability was not determined until I was 36 years old. Up until that point, I knew I was different. I felt broken. I didn’t understand why I struggled like I did, why I couldn’t be the way others wanted me to be, why the world was such a confusing place. I learned early in my life how to mask. This was one of many survival strategies that I would develop as a way to cope. My adaptive skills were all about surviving and I got really good at it. I often receive confusing looks from people when I tell them I am autistic.

I can see what is going through their minds by their facial expressions and body language.  How can that be? I am a teacher, a mother, a drive a car, I live independently, I was married, and I have completed 12 years of higher education. How can that be?

Because it is.  

But I must be high functioning? Right??

Nope.

The psychologist that diagnosed me told me that I can function, but I am highly impaired. What does this mean? It means that Autism exists on a spectrum. It means that this spectrum is not a straight line, but rather a kaleidoscope of colors on a color wheel.

Rebecca Burgess describes the spectrum as,

Each person with autism will have a set of traits all in different areas of the spectrum. The areas where they don’t have a trait will function no differently to a neurotypical brain, but may be affected by circumstances. In example, I am good at making conversation (language). But I get sensory overload in loud and crowded spaces, which then makes conversation very hard for me.

I may appear functional in certain situations, but not in others. I thrive in the world of academics, but I struggle with various aspects within academics. I have social anxiety and generalized anxiety disorder in addition to be being autistic. I also have Ehlers-Danlos Syndrome that has resulted in my muscles having to hold my body together, because my bones essentially float. I have very unstable joints and experience chronic pain. I am both a sensory seeker and a sensory avoider depending on the situation. I am developmentally delayed. I am a highly verbal person, but I struggle with communicating effectively with people who don’t understand how I communicate. I am a very literal thinker. I have dyscalculia (math learning disability); yet understanding science concepts is easy for me. I am a highly educated, highly trained person, but have continued to struggle with underemployment. I have been experiencing severe burnout for decades. I also struggle with Complex-PTSD from growing up in an environment that was damaging to me as well as being in an abusive marriage. I married what I knew, because I know how to survive in that environment.

The key word here is “survive”. I am really good at surviving, but I am only now learning at the age of 45 how to live. I have only recently understood the nature of the deep attachment wound that I have had since I was a child. Those strong adaptive skills that I have been utilizing all my life to survive are not useful when you are trying to live.

I don’t want to become a burden, so I fight every day to hold on to my independence and the appearance that I can function in this world that is not designed for me. I internalized the message over the years that I am a burden, that I am no good. I have been regularly misread and misunderstood. Toxic shame became a regular part of my life.   

I am afraid to let myself be vulnerable and rely on other people, because I have been consistently denied needed emotional support by those closest to me. I struggle accepting help, because I have trust issues and don’t want to feel like a burden.

In order to live, in order to maintain healthy relationships, I have to deprogram myself and learn adaptive skills that focus on living, not just surviving. I grew up in a home where everyone was surviving. I was not recognized for who I am as a person, but rather what I was expected to provide for others. I was conditioned to be a codependent. I continued to survive under these conditions in my marriage which only added to my trauma. I am in a better place now, but my journey is not complete. I still have a long way to go toward healing and self-acceptance.  

I made the conscious decision years ago that I was going to be the parent I needed, but never had. I became determined to do what I could to make the world better for children and my students. My counselor has had the considerable task of reminding me that I need to think about myself a well. I need to make the world better for myself and it is not selfish to think in those terms.

Logically, I know that I am not a burden. Logically, I know that I am capable and highly skilled. Emotionally, I am a no good burden not worth anything.  This is where the disconnect lies.

I presume competence with all my students. I can support my children and others in healing and believing in themselves. Unfortunately, I cannot do the same for myself. At first I thought there was some sort of barrier that I needed to find a way to get around, under, over, or through just like how I have faced all the other barriers in my life.  The truth of the matter is that there is no barrier. There is nothing there, just a void with nowhere for me to go. I am unable to reach my injured core self, because of how deep my attachment wound really is. I am stuck and have been stuck for a very, very long time in this unending cycle of grief on the edge of this void unable to cross in order to comfort and heal my core self.

So, what do I do now?

That is the challenge that my counselor and I am currently facing. What type of resource figure can I create to help bridge the void between my adult self and the injured core self?

This blog was a starting point to see if I could write to someone who was newly diagnosed and explain what disability rights are to me as well as describing the struggles of feeling like a burden and the fear of vulnerability. Unfortunately, I don’t feel I have achieved what I had set out to do.

My logical part of myself and my emotional part of myself are still at odds with each other. I began this blog by stating people with disabilities have rights. Great! Yet, we don’t live in a perfect world and those rights are routinely violated. To have to keep fighting for your own existence is exhausting, hence the decades of severe burnout that I have experienced.

To those who are newly diagnosed, your journey will be your own and it is not going to be easy. There has been progress made, but exclusionary practices are still being utilized. Intersectionality is not being considered as it needs to be. Disability Justice is not the same Disability Rights. There are individuals, groups, and organizations that have taken up the challenge of addressing Disability Justice.

From Disability Rights, Studies & Justice,

Disability Justice was built because the Disability Rights Movement and Disability Studies do not inherently centralize the needs and experiences of folks experiencing intersectional oppression, such as “disabled people of color, immigrants with disabilities, queers with disabilities, trans and gender non-conforming people with disabilities, people with disabilities who are houseless, people with disabilities who are incarcerated, people with disabilities who have had their ancestral lands stolen, amongst others.”

Initially a group of queer disabled women of color, Patty Berne, Mia Mingus, and Stacy Milbern, who eventually united with Leroy Moore, Eli Clare, and Sebastian Margaret, these activists formed the Disability Justice movement to strive for collective liberation. Visit the source of this summary, “Disability Justice, A Working Draft” by Patty Berne to read about the ten principles of the movement.

I am on a journey of healing with the goal of finding self-acceptance. I still have a long way to go, but I recognize the long distance I have travelled. I wrote the following in April 2020 in a blog entitled Midnight Thoughts,

Along the way, a person might encounter moments where they feel stuck or moments where they feel they have lost traction. Some might even feel trapped in their circumstances. Panic might arise. Anger and frustration as well. Acknowledge these feelings.  Sit with these feelings without judgement. This is not an easy task. It takes practice and guidance from a trained professional. There is no shame in asking for help.

Find a healthy way to center yourself and try again by taking one step at a time and dealing with one thing at a time. Keep moving forward.

I am feeling stuck now, but this is only one moment in time. I have been a runner for 27 years. I feel confident in my running and it helps me feeling grounded. I know where my feet are when I run.  Here I am getting in my running stance. I am determined to find a way to bridge the void so that I can keep moving forward. As a newly diagnosed person, I hope you do the same.

Fractured, but Intertwined

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I am fractured. Split into pieces due to years and years of trauma and neglect with the pieces of myself hidden away in dark corners of a room in my mind protecting me so that I can keep going. With guidance, I have discovered at least five pieces:  

  • a young girl who sits on the floor across from me with her knees up leaning sideways against the wall holding her head and gaze down not talking, because there are no words (I have written about her before),
  • a young woman standing in the corner full of shame with her head and gaze down but facing me while holding her hands up to her chest, the one who will comply and do as she is told, the one who feels broken and invisible,
  • two others with adult female bodies who are ageless standing in opposite corners
    • one stands closest to me frozen, arms slightly out to her side, unable to speak, or move, disconnected from her body, but is aware of everything around her staring at the wall but glancing sideways towards me mouthing “help”,
    • the other standing in the darkest corner facing away from all and will scream and lash out if anyone comes near her, the one who rages and is in so much pain, but remains almost catatonic when left alone,
  • and finally the current part, the mother who sits in a chair at a table under a light in the middle of the room seeing all these parts, reaching out and wanting to connect, but is unable to.

I am the mother, the one who keeps going, the one who always finds a way no matter how many times I have fallen. At least, that is what I tell myself.  I feel exhausted and helpless and so very frustrated. I reach out to those parts to comfort them, trying to make them feel whole again, but I can’t. These parts took the burden of life’s pain off of me so that I could keep going. I survived, because of them. I made it through, because of them.

Now I am a cracked version of myself with each part interacting together at various levels and reacting to specific triggers that I encounter in my life, but at the age at which they fractured. I feel I am working through the many layers of trauma while seeking refuge at the same time. There are times I want to hide in a ball in a safe place in my room away from everyone and everything. This part frustrates me. I struggle to function when this part activates. There are no words. I feel useless, overwhelmed, sad, and alone. The anxiety is debilitating. Then there are times when I want to lash out kicking and screaming and pummeling, but I don’t. I am afraid of this part of myself, so I freeze instead. I am crying for help in my head, but I can’t do anything and it feels like no one notices how much I am struggling. I feel so alone and invisible, but I am expected to keep going. I have to, so I comply. I don’t know how much of that expectation is coming from me and how much of it was internalized throughout my lifetime.

I feel like I am disassociating as I type this. My head feels heavy, but a thought has occurred to me that all these parts sacrificed themselves so that I could keep going. The drive and determination that I have to keep going has been there for as long as I can remember. Did I really do that? Place that expectation on myself, that no matter what, I have to keep going?  

I have written about resilience where I stated, “I know so many autistic individuals that have developed amazing resiliency. They have had to. Yet, this amazing ability seems to go unnoticed by so many. We understand what is being said about us, even if certain people do not notice that we are listening to their every word. We can read and understand what is being written about us, even though we might not be able to verbally prove this to certain people’s satisfaction. Resilience. We deal with a lot. Many of us crumble under the weight of the stress at some point in our lives, but many of us climb out of that rubble and continue on. That is what resilience is, the ability to keep moving forward despite adversity.”

I wonder now, how much of my resilience is based on being able to keep moving forward by unconsciously fracturing myself. Sure, it is great that I can keep climbing out of rubble and continuing on, but at what cost?

Two years ago I wrote a piece entitled To Those Who Still Don’t Understand where I discuss a study out of Sweden that was completed late in 2015 which “revealed people with autism died an average of 16 years earlier than those who do not have autism.  Previous studies had shown that 30 percent to 50 percent of people with ASD have considered suicide at some point in their lives.  Bullying, anxiety, depression, feelings of isolation and alienation all contribute to this.  There is a high cost trying to cope in a world that is not designed for you nor is accepting of you.”

I turned 45 years old yesterday. As my son explained it, I have taken 45 revolutions around the sun. I have taken 45 trips around the sun and survived each one, but the thought of how many more trips I have left weighs heavy on me. I am tired. Not just everyday sort of tired, I am at tired at a level where there is no proper words to describe it. I have written many times over the years about this, including The Hidden Meaning Behind “I’m Tired”.

I fractured trying to survive in this world that I was born into surrounded by people who did not understand me, but expected me to conform to their standards and way of living. Now I am trying to create a world that is safer where I can become whole again and be seen and respected for the person I am. This process is slow, and my patience only goes so far, but I am determined to connect to all my parts again at some level. I want to keep making trips around the sun. I am not ready to stop being a traveler. My journey still has many, many miles to go, yet.

Autistic Energy – A Depletion of a Person

I have been thinking a lot about energy lately. Particularly about human energy and why I am always so tired.  I have written about being tired before –> The Hidden Meaning Behind “I’m Tired”

Being tired, burned out, exhausted is something that I continually deal with on a regular basis.  Being tired never seems to end. There is a meme that I really relate to – “I am not an early bird or a night owl. I am some sort of permanently exhausted pigeon.”

Exhausted Pigeon

Why am I like this? Why I do I feel tired, exhausted, and burned out all the time? As with everything in my life, it is never one thing.

I am not the first autistic person to write about this topic. Some others include:

The common message in all of these is the problem with masking and not being able to be your true self in a world that is not designed for you. Societal expectations have an enormous impact on an autistic person’s energy levels.  Contrary to what our society pushes, having the goal to look “normal”, or “be indistinguishable from our peers”, is not a good thing.  Having this expectation that we must strive to pass as non-autistic is damaging to the autistic person.  Unfortunately, we learn at a very young age that in order to survive, we must wear a mask.  As a young person, we may not truly understand why we wear that mask; it is almost instinctual, ingrained in our psyche that in order to make it in our society, we must hide our differences.  We become targets if we don’t.  Wearing a mask is exhausting and we can’t always hide who we are.  No one can maintain a mask indefinitely.  At some point, cracks will begin to form.  A person will eventually burnout and crash due to the tremendous toll that wearing a mask takes on a person.

That mask hides a lot of crap. Take me for example.  By looking at me, you are not going to see a highly impaired autistic person who lives in chronic pain and has mobility issues from Ehlers-Danlos Syndrome, who also has Complex-PTSD from a medical trauma and domestic abuse, who has Generalized and Social Anxiety Disorder, who struggles with depression and panic attacks, who has a math learning disability (dyscalculia), but who also has a Bachelor’s in Science degree, a Master’s in Education degree, been a teacher for over 20 years.  People have gotten frustrated with me over my dyscalculia.  I have been asked, “You are so good at Science. Why are so you so bad at math?”  A person can be good at one thing and still have a learning disability in another thing.  One doesn’t cross the other out.

I am called “high-functioning”, but that is not correct. Functioning labels are very problematic. I am seen as “high-functioning”, but then my needs are ignored.  I am told I am being ridiculous or overdramatic, that I am not really impaired, because I have been successful in X, Y, and Z.  I am questioned as to why I can’t do a thing when I did the thing last week.  There are days I stay in bed all day in recovery mode.  It takes me a long time to recover from social activities.

My son has been seen as “high-functioning” as well. The reason is that he is highly verbal and it considered twice exceptional. His educational support needs were over looked, because the school saw a gifted student and didn’t think he should be receiving services even though he qualified for those services.  He eventually had to be home schooled due to the school not being able to meet his specific needs.  My son could no longer function in a regular school setting.  Functioning labels are harmful.

My daughter has been seen as “low-functioning” and it really bothers her. People think that she can’t do things. They see her as “low-functioning”, because she doesn’t talk much in public and she carries around a stuffed animal and uses “chewies” to help her self-regulate. She complains that things in school are “dumb-down” for her and she finds that insulting. She has learned to advocate for herself and having reached the Age of Majority, she is now in charge of her Individual Education Program (IEP). She wants to be challenged, but not to the point that it overwhelms her. Who would want to be overwhelmed? My daughter is not “low-functioning”.  She has needs just like anyone else.  She can function when her needs are met.  Doesn’t that apply to everyone?

Both my children learned to wear a mask at a very young age. It is not something I set out to teach them.  I didn’t even know I was autistic until after both my children were diagnosed.  As I stated earlier, it is almost an instinctual behavior for an autistic person to learn wear a mask.  Both my children struggle with mental health issues.  Some of these issues are genetic and some were caused by their father. Children don’t choose to be neglected and emotionally abused by a parent.  Domestic violence creates ripple effects on those who have been subjected to it. If domestic violence was experienced in childhood, these ripple effects can last way into adulthood.

There has been more information coming out recently about the intersection of autism and trauma. Lauren Gravitz did a piece about this topic entitled At the intersection of autism and trauma. In the article, Connor Kerns, assistant professor of psychology at the University of British Columbia in Vancouver, Canada, is quoted:

 “We know that about 70 percent of kids with autism will have a comorbid psychiatric disorder,” says Connor Kerns, assistant professor of psychology at the University of British Columbia in Vancouver, Canada. Depression, anxiety and obsessive-compulsive disorder are all known to be more common among autistic people than in the general population, but PTSD had largely been overlooked. Until a few years ago, only a few studies had delved into the problem, and most suggested that less than 3 percent of autistic people have PTSD, about the same rate as in typical children. If that were true, Kerns points out, PTSD would be one of the only psychiatric conditions that’s no more common in people with autism than in their typical peers.

One potential explanation, Kerns says, is that, like other psychiatric conditions, PTSD simply looks different in people with autism than it does in the general population. “It seems possible to me that it’s not that PTSD is less common but potentially that we’re not measuring it well, or that the way traumatic stress expresses itself in people on the spectrum is different,” Kerns says. “It seemed we were ignoring a huge part of the picture.”  

Bushraa Khatib wrote An in-depth look into how people with autism experience trauma, and in it, Khatib states:

To date, little research has looked in depth at the experience of trauma in people with autism. Research has shown that people with autism have a higher risk of adverse childhood experiences, such as financial hardship, mental illness or substance abuse in their families or parent separation or divorce. Such events have been consistently linked to immediate and lasting health disparities, including post-traumatic stress disorder (PTSD), anxiety, depression and other mental health issues.

There are also many reasons to believe that individuals with autism are more likely to experience and struggle to recover from traumas. According to a 2015 review article published in the Journal of Autism and Developmental Disorders, studies have found that youth with intellectual and developmental disabilities are more likely to be maltreated than their peers. Social isolation, family stress, and poor communication skills – all of which are prevalent in children with autism – increase the risk of maltreatment

The lack of awareness and understanding of autism within the community and increased social isolation of individuals with autism can also put them at additional risk for victimization.

The impression I am getting from these articles is that there is a general lack of understanding of autism and how co-occurring conditions manifest in an autistic person. Due to this lack of understanding, society is ignoring a huge part of what is happening.  Living in our society, being told we must meet expectations that outweigh our abilities to meet them, constant stress of change, the ongoing sensory onslaught, the inability to recover quickly enough from the strain of pushing to meet these external expectations, and this apparent instinctual behavior to mask ourselves so that we can pass as “normal” is harming us so much so that there are those who begin to see suicide as the only logical way to end the pain.  I have written about depression and autism before –> Social Skills and Depression.

From my blog entitled To Those Who Still Don’t Understand:

As the aforementioned article states, the ages for the life expectancy of autistics vary a bit, but the statistics point to an uncomfortable reality.  Autistic life spans are shorter than typical life spans.  A study out of Sweden completed late in 2015, entitled Premature mortality in autism spectrum disorder, revealed that people with autism died an average of 16 years earlier than those who do not have autism.  There are other studies out there that support the Swedish study findings. 

Why is it this way?  Why do autistics seem to die younger than those who are not autistic?

Previous studies had shown that 30 percent to 50 percent of people with ASD have considered suicide at some point in their lives.  Bullying, anxiety, depression, feelings of isolation and alienation all contribute to this.  There is a high cost trying to cope in a world that is not designed for you nor is accepting of you.

Then there are the co-existing conditions that seem to be common to people with autism. Chronic health problems can shorten a person’s life span.  Epilepsy, Elhers-Danlos Syndrome (EDS), gastrointestinal problems, sensory overload, and lots of stress related illnesses, which can lead to physical ailments, including heart disease, brain inflammation, strokes, and diabetes – these seem to be common occurrences in the lives of autistic people. 

I will end this blog with a something that I wrote on Facebook on January 11th, 2020, and to clarify that I am not suicidal:

My counselor told me today that the complex stressors that have been ongoing in my life have more to do with environmental/systematic issues than anything else. The type of assistance/support I need to reduce these complex stressors doesn’t exist. This is not the first time I have been told this. Other professionals and non-professionals have told me this over the years.

The system is rigged and it is broken.  Our society is not designed for people like me and families like mine. I feel like I am trapped in these seemingly never ending loops of environmental and financial instability, fight/flight/freeze response, and being retriggered again and again.

On a positive note, I have been able to climb to higher loops than where I was seven years ago. Back then, I was full-on in survival mode. I was a brand new single parent who was under-employed, in grad school, financially insecure, facing food scarcity, beginning the journey of coming to terms with my own disability and Complex-PTSD, needing to begin home schooling (another system failure), and beginning the journey of supporting my children through their own grief and trauma as well as helping them learn self-acceptance. There was a lot of crying, lots and lots of crying. Survival was my only option. I had to survive so that my kids could make it.

Climbing out of a swirling tornado is incredibly exhausting, and so much of that climbing I have had to do on my own while “pulling” my kids along with me, because no one gets left behind.

I am still stuck in that damn tornado, but I am a lot further up than I used to be. I am high enough to see the top edge, but I am still too far down with too much weight on my shoulders to reach it.

I need a break. I am tired. I am just so damn tired.

Dating While Autistic and in My 40s

“The meeting of two personalities is like the contact of two chemical substances: if there is any reaction, both are transformed.”     – Carl Jung

Yes, autistic people have partners and have children. Autistic people can and do get married. Being autistic does not mean a person won’t have romantic connections with other people.  Some autistic people find it easy to be in romantic relationships and some might struggle.  Struggling in relationships is not solely restricted to autistic people. Lots of people with different neurologies have relationship struggles.  Being autistic and/or having autistic children DOES NOT increase the chances of divorce.  This is a misconception that just won’t die.  The myth is that the divorce rate in families with autism is 80%. This is not true!  The myth has been debunked!

Under a Looking Glass: What’s the truth about Autism and Marriage?

Researchers in Baltimore investigated the supposed 80 percent divorce rate for parents of a child with autism spectrum disorder (ASD). Unlike other studies, this one was particularly large – using data from almost 78,000 parents, 913 of whom had a child with autism – and included families from across the United States. The bigger the study, the less likely the results are due to chance or something unique about the pool of people studied. The researchers, from Kennedy Krieger Institute and Johns Hopkins University, found no evidence of an 80 percent divorce rate.

In fact, parents of children with autism split up as often as parents of children who don’t have autism, according to their research. In this study, about two-thirds of the children lived with their two biological or adoptive parents. That was true whether the children had autism or not. The severity of a child’s autism symptoms had no effect on the likelihood that parents would go their separate ways.

I am autistic, and, yes, I was once married. My divorce was not caused by my neurology nor was it caused by the neurology of my children.  I was in an abusive marriage, which I have written a lot about.  My ex has tried to blame my neurology as to why he did the things he did, but it really came down to him using projection and refusing to take responsibility for his actions.

Here is a list of a few of my previous posts about my abusive marriage:

Now that I got that out of the way, I want to address a different topic – dating. The last time I was dating anyone was when I was in my twenties.  Dating in the mid to late 90s was very different compared to today.  For one thing, there was no social media yet.  According to the Complete History of Social Media: Then And Now, the first recognizable social media site, Six Degrees, was created in 1997. It enabled users to upload a profile and make friends with other users. In 1999, the first blogging sites became popular.  I didn’t even know this until just now when I looked it up. This wasn’t a platform I had access to.  I didn’t have a cell phone until after my daughter was born, which would have been in early 2001.  Texting was still in its infancy at this point.  There was no YouTube, or SnapChat, or Facebook.  There was no Twitter, or Instagram, or Tumblr. Myspace wasn’t even around yet.  The World Wide Web became available in 1991, but to access it you had to dial into it through the phone line. There were no dating apps.  No one used the word “apps”.  Meeting and staying connected to people was very different when I was in my 20s.  A person had to either be “fixed up” with someone by a third party or you had to meet a person somewhere and talk to them face-to-face and decide if you want to see this person again.  I know, weird, right?

Here we are in the year 2019 and I am now in my 40s. I am a single mom to two older teenagers.  I hadn’t had much dating experience prior to being married and for much of my adult life I had been in a toxic, abusive situation that resulted in me developing Complex-PTSD as well as both my children developing symptoms of PTSD.  My ex left seven years ago and the divorce officially happened five years ago.  Seven years is a long time. On average, a person in an abusive relationship will attempt to leave 7 times before finally leaving for good.  I was no different.  I was trauma bonded to my ex and a trauma bond is very difficult to break. My ex came back after the first three years.   It didn’t last, because after a while he fell back into his abusive behavior patterns.  I hadn’t dated anyone that whole seven years, that is, until now.

Let me tell you, dating in your 40s with children is weird! Dating as an autistic woman with Complex-PTSD makes it so much more difficult and scary. It is a whole different landscape these days, and, luckily, my counselor has been helping navigate.  My children have been providing a lot of encouragement as well.  Yes, my two autistic teenagers who have never dated anyone are helping their mother figure out how to date in this modern age.

When I first entered the dating realm in my 20s, I didn’t know I was autistic. I didn’t know that I was developmentally delayed.  I didn’t understand my sensory needs.  I hadn’t been exposed to what a healthy relationship was like.  I knew I didn’t want to get married until after I finished college, but I did date.  Having children was also very important to me.  My biological clock went off long before I was ready to get married.  What ended up happening was that I married what I knew.  The skills I had acquired growing up prepared me to live in a toxic marriage. 

I knew how to navigate a situation like that. I knew how to survive.  My adaptive skills that I had acquired growing up as an undiagnosed autistic child served me well.  It got me to where I am today.  Those skills kept me alive, but I didn’t know how to live.  I am very good at surviving, but I found myself at a loss when it came to actually living my life without being in a constant state of fight/flight/freeze/fawn. 

I needed to unlearn my old adaptive skills first before I could relearn new healthier adaptive skills that would allow me to successfully be in a healthy relationship. This process of unlearning and relearning takes time and it is not necessarily a smooth transition, especially since it requires a person to process layers of trauma that caused the old adaptive skills to develop in the first place.  This process left me in a sort of grey zone of not knowing what to do or expect when I finally did meet a man I wanted to date.

This void, if you will, is very anxiety provoking. As an autistic person, I need routine and predictability.  Even if it was toxic, I knew how to navigate in my old life.  That old life was “home” to me, but I didn’t want that “home” anymore.  I wanted to know what it was like to be in a healthy relationship.  That required change and change is scary, particularly for an autistic person.  I couldn’t make the change happened without help.  The hurdle was too large for me to get over without assistance.  That is why I went back into counseling after 12 years when I was first diagnosed with PTSD.

During the time I have been in trauma therapy and unlearning and relearning adaptive skills, I joined a dating app. My counselor encouraged me and I felt it was time.  This dating app matched me with a gentleman that I probably would never have met on my own.  Different towns, different school districts, but we have so much in common.  We started chatting through the app.  Then we decided to meet. That was over two months ago and our relationship has steadily progressed in a positive direction since.  I am in my 40s and I officially have a boyfriend.  For the first time in my dating life I feel genuinely loved for the person I am, my true autistic self.  I feel accepted and seen as a person, not just seen as some extension of another person to be used as they saw fit.  It is an amazing feeling, but I still struggle with trust.  This struggle comes from being a domestic abuse survivor.  I am working on learning how to trust again, taking things slow, and enjoying every moment of it.

I don’t know what the future holds for me. I don’t know what this new experience will New Beginningslead to, but I am grateful for this new man in my life. Not only is his showing me what being in a healthy relationship is like, he is also showing my children that there are good men out there, good fathers out there who do actually emotionally support their children and provide for them without being asked to. 

My children’s negative memories about their father will never go away, but my hope is that this new experience can help build more positive memories for them. My children like this new man in my life. They like how he treats me. They have both told me that they don’t feel like they are walking around on eggs shells with this new man like they feel around their father.  There haven’t been any red flags or warning signs that this new guy is a danger either.

My children haven’t seen their father in over a year and a half. They don’t speak to him. At this point, their father still represents a danger.  He caused so much damage, but tries to pretend like everything is fine and everything is “normal”.  This situation is not fine nor is it “normal” in anyway.  This is one of the big reasons why it took me so long to get back into the dating scene.  I didn’t feel safe.  I didn’t know how to trust again.  This new man in my life has been showing me, little by little, that I can trust again.  It is a rarity for me to be able to relax around other people.  I find myself relaxing with him.  I feel better within myself and I like who I am when I am with him.  He makes me feel pretty without doing anything.  I had to learn that this is what it feels like to be respected by a romantic partner. 

He doesn’t push me into things. He is patient and understanding. He shows compassion and is empathetic. He is considerate of my needs and wants to learn about my neurology. He has even asked about words he should and should not use.  This is incredible to me.  I have not experienced this type of situation before.  He sees who I am and wants to learn more so that he can be more supportive!

I feel like a teenager again learning how to do all this romantic stuff all over again. It is confusing at times and other times it feels natural.  I am a 44 year old autistic woman learning how to date again in the modern age.  It is fun and thrilling and scary and tiring all at once.  Thanks to the development of social media and dating apps, I have been able to experience romantic love at a level that I never have before, a healthy, respected love.  Autistic people love, they have relationships, they have romantic partners, and they do get married and have children.  This process might look different from the societal norms of today. It might be slower, there might be more confusion, more heartache, but that doesn’t mean it won’t happen.  

Toxic Shame – You might struggle with it and not even know it!

(Trigger Warning – Mention of suicide and abuse.)

“Toxic Shame”, just reading those words makes me cringe. I didn’t know until recently that there was a term for it, but I am very familiar with the effects and damage that toxic shame causes.  In my experience, toxic shame can cause generational damage as well.

What is toxic shame?

To answer that question, I first have to explain what ordinary shame is. According to Mary C. Lamia Ph.D. , “as a self-conscious emotion, shame informs us of an internal state of inadequacy, unworthiness, dishonor, regret, or disconnection. Shame is a clear signal that our positive feelings have been interrupted. Another person or a circumstance can trigger shame in us, but so can a failure to meet our own ideals or standards.”

brene brown

In the article, What is Toxic Shame? , it is the shame that has become toxic.  That level of shame is described as “internalized shame” that hangs around and alters our self-image. For some people, toxic shame can consume their personality. For others, the shame lies beneath their conscious awareness, but can easily be triggered.

The article further explains that “toxic shame differs from ordinary shame, which passes in a day or a few hours, in the following respects:

  • It can hide in our unconscious, so that we’re unaware that we have shame.
  • When we experience shame, it lasts much longer.
  • The feelings and pain associated with shame are of greater intensity.
  • An external event isn’t required to trigger it. Our own thoughts can bring on feelings of shame.
  • It leads to shame spirals that cause depression and feelings of hopelessness and despair.
  • It causes chronic “shame anxiety” – the fear of experiencing shame.
  • It’s accompanied by voices, images, or beliefs originating in childhood and is associated with a negative “shame story” about ourselves.
  • We needn’t recall the original source of the immediate shame, which usually originated in childhood or a prior trauma.
  • It creates deep feelings of inadequacy.

“If not healed, toxic shame can lead to aggression, depression, eating disorders, PTSD, and addiction. It generates low self-esteem, anxiety, irrational guilt, perfectionism, and codependency, and it limits our ability to enjoy satisfying relationships and professional success.”

 I understand all of this.  Shame and guilt have been used as weapons to manipulate me, to control me, to make me comply with another’s wishes, to make me submit.  It is an awful experience and it stays with you.  For much of my life I had no defense against this.  I was conditioned to be a co-dependent early on. I was taught that my needs came secondary and that I must never disappoint.  It was the end of the world if I disappointed, so I complied, much to my detriment.

Taking responsibility for things that aren’t yours (false responsibility) and toxic guilt are two things that often go hand in hand with toxic shame. A person ends up becoming overly agreeable which opens them up to being easily manipulated. Shame corrodes the person from the inside and can affect all areas of their life.

This is not something that just goes away. My conditioning followed me well into adulthood. Mix in my autistic brain insisting that “rules are rules”, my unwavering loyalty, my need to help others, my fear of disappointing people, my social anxiety traits, and my full-blown Generalized Anxiety Disorder as well as never being taught growing up how to advocate for myself (I learned as an adult) and I ended as someone who has, overtime, developed Complex-PTSD from being subjected to years and years of emotional neglect and abuse.

Keep in mind that shame and guilt are two different feelings.  Brene’ Brown, researcher-storyteller, explains in her TEDtalk – Listening to Shame:

Shame is a focus on self, guilt is a focus on behavior. Shame is “I am bad.” Guilt is “I did something bad.” How many of you, if you did something that was hurtful to me, would be willing to say, “I’m sorry. I made a mistake?” How many of you would be willing to say that? Guilt: I’m sorry. I made a mistake. Shame: I’m sorry. I am a mistake.

I was not the way they wanted me to be.  My masking took a huge toll on me, but, in my mind, I had to comply. It was how I avoided the shame and guilt trips.  If I just complied, then I was spared the emotional gut punching. By complying and trying to please, maybe I could feel valued and not worthless, at least for a little while.  If I objected in anyway, advocated for myself in ways that contradicted them, and/or insisted on maintaining my personal boundaries, then the shaming would begin. The shaming is still happening, but instead of complying, I get angry.

My neurology and my ability to parent have been attacked for years.  This started when I had had enough and drew a metaphorical line.  I wasn’t going to tolerate being treated like that anymore.  I should never have had to fight those closest to me in order to have my individuality and identity, but I did fight for over three decades.

How does toxic shame become generational?

Parents can unintentionally or intentionally transfer their shame to their children through verbal messages or nonverbal behavior. If they were subjected to toxic shame, then they might project that shame onto their own children and the cycle continues. This is even truer when a parent has an untreated personality disorder or untreated mental health issue. Some examples of this include: a child might be feeling unloved in reaction to a parent’s depression, absence, indifference, or irritability or feel inadequate due to a parent’s competitiveness or over-correcting behavior.

Toxic shame makes it very difficult for a person to accept themselves. A person can find that they hate themselves, that they feel absolutely worthless and have no value what so ever. If this person is also autistic who is trying to live in a world that is not designed for them then that feeling of worthless and emotional pain only grows exponentially.

Up to 50 percent of autistic adults have considered ending their own lives, a rate two to three times that seen in the general population (1).  There was a time that I wanted to die.  I wasn’t suicidal. I just wanted my physical, mental, and emotional pain to end – more on that here.

According to Luna Lindsey:

Shame sends two of these three messages: 

  • I am intrinsically unacceptable which will make me always be alone
  • I am inherently unfixable and therefore will always be a source of trouble for those who do love me.

And shame (and resulting anxiety and depression) causes so much pain, that the third ingredient is an easy leap. After suffering long enough, suddenly death seems like a relief.

Luna continues on and suggests some possible solutions:

Affirmations – “For starters, when I feel this way, I often find relief from reading the well-crafted and autism-specific affirmations by Liane Holliday Willey which are posted on the WrongPlanet forums. These work most of the time, except for when, for whatever reason, I’m feeling overly cynical and don’t believe them.”

Self-Acceptance – “Because of these differences, there are many behaviors that will always be difficult or even impossible for NTs to accept, and you have to accept that, too.”

Identify your strengths (Aspie Superpowers) – “These are examples of how ASD makes you particularly awesome. They are the other side of the coin, your X-ray vision to the kryptonite. For examples, see the two links at the beginning of the paragraph. Come up with your own list. During shame-filled times, go over them and remind yourself of your strengths.”

Consider coming out –According to Brené Brown, shame requires secrecy, silence, and judgement to survive. Without these things, it will die. Consider finding a safe space, free of judgement, either with safe family, or safe friends, or with a therapist, or online at a place like WrongPlanet. Bring your shameful moments to light. If you feel judged, then go back into your shell until you do find someplace safe.”

To close, I would like to share a poem by Tara Brach, Radical Acceptance:

May all beings

Heal and awaken

Into the love and awareness

That holds and honors

The fullness of being.

(Poem found at The Power of Mindful Empathy To Heal Toxic Shame)

 

References:

  1. Segers M. and J. Rawana Autism Res. 7, 507-521 (2014) PubMed

Talking About Mental Illness – Society Needs to do Better

Content Warning: Suicide and suicide thoughts.

Whenever a celebrity or well-known person commits suicide, suicide hotline information is plastered all over social media. 

Feeling depressed? Reach out! Call this number!

Know someone showing these signs? Reach out!

I am not disparaging the need for these types of hotlines.  Many people can find help through them. In 2015, John Draper (PhD, Director, National Suicide Prevention Lifeline Member, SPRC Steering Committee) reported that in the ten years since the Lifeline began, their centers have answered more than five million calls from people in suicidal or emotional crisis.  

National Suicide Prevention Lifeline – 1-800-273-8255 or Chat

En Español – Nacional de Prevención del Suicidio – 1-888-628-9454

For Deaf & Hard of Hearing  1-800-799-4889

The problem is, how many people didn’t or won’t call? How many children and adults don’t call and continued to suffer in silence, because the people they did reach out to dismissed them or they didn’t feel safe enough to reach out at all? How many kept silent, because they didn’t know what to say, didn’t want to burden their families, or because they were raised not to say anything at all?

According to the CDC, in 2016, nearly 45,000 Americans age 10 or older died by suicide. Yes, as young as 10 years old. Suicide is considered the 10th leading cause of death and is one of just three leading causes that are on the rise.  Researchers also found that more than half of people who died by suicide did not have a known diagnosed mental health condition at the time of death.

According to The State of Mental Health in America, 1 in 5 Adults have a mental health condition. That’s over 40 million Americans; more than the populations of New York and Florida combined. Youth mental health is worsening. Rates of youth with severe depression increased from 5.9% in 2012 to 8.2% in 2015. Even with severe depression, 76% of youth are left with no or insufficient treatment.

From the Anxiety and Depression Association of America, ADAA:

“Anxiety and depression are treatable, but 80 percent of kids with a diagnosable anxiety disorder and 60 percent of kids with diagnosable depression are not getting treatment, according to the 2015 Child Mind Institute Children’s Mental Health Report.”

“Anxiety disorders affect one in eight children. Research shows that untreated children with anxiety disorders are at higher risk to perform poorly in school, miss out on important social experiences, and engage in substance abuse.”

In Spokane County, Washington State, the youth suicide rate more than doubled from 2013 to 2016. It went from 4.3 per 100,000 people 24 and younger to 10.7, Washington State Department of Health data show.  It was reported that nearly 20 percent of Spokane County’s eighth, 10th or 12th graders have seriously considered suicide, according to the Spokane Regional Health District. In 2016, the last year data was publicly available, 15 percent reported that they made a plan to do so. Chris Moore, a student services coordinator with Spokane Public Schools, says suicide attempts are spiking as well, even among kids in elementary school. “We’ve seen a drastic increase with the number of attempts,” Moore says. “It’s a public health crisis. It really is.

For more information – As youth suicide rates surge in Spokane, school officials search for answers

My family has a long history with mental illness on both sides. Then there is my ex-husband’s family.  Various forms of anxiety and depression, PTSD, Bipolar, alcoholism (which is considered a mental illness according to the AMA and the APA – it’s all there based on information spanning five generations.  

For more information – Anxiety and Depression Association of America – Facts & Statistics

My sister-in-law, who I will never have the opportunity to meet, violently committed suicide with a gun when she was 21 years old, three weeks after her son was born.  He will never know his mother.  He is now older than she was when she ended her life. His father raised him on his own. 

My brother-in-law has struggled with depression all his life and has been slowly killing himself with alcohol and drugs. He is in his fifties and he doesn’t expect to outlive his parents. He can’t hold on to a regular job and lives most of the time with his parents and some of the time with his girlfriend. 

My ex-husband has also struggled with depression all his life, but has refused treatment.  His untreated mental illness and his untreated personality disorder ripped our family apart, twice.  He ran from life instead of facing his problems.  He couldn’t deal with his demons, so he pushed his family away and went into isolation with his seven guns and his paranoid ideas.

My ex-husband came from a family who doesn’t talk.  My ex was raised to believe that it was a sign of weakness to talk about your emotions and to ask for help.  Instead, he buried his demons, walled himself up, and went emotionally flat lined to the outside world. The reality is that he can’t handle his emotions, he fears them.  He is emotionally stunted, a 45 year old man emotionally stuck somewhere between a 12 year old boy and a 17 year old teenager.  Our children are actually more emotionally mature than he is.  My sister-in-law killed herself when my ex was only 17 years old and that is where he stopped growing emotionally as a person.     

My son, who is now 15 years old, was diagnosed with depression and anxiety when he was six years old.  He was diagnosed with Autism a year later.  Autism is a developmental disorder, not a mental illness.  My son was on suicide watch twice when he was 11 years old due to his father’s behavior.  My ex had fallen into a major depressive episode, the worst I had seen him be in. He refused to get help.  He neglected and then abandoned his children resulting in my son developing PTSD.  My son was never suicidal, but he had given up hope in life. He saw no point in life any more.  My son still struggles with depression.  He is on medication and goes to weekly counseling sessions. 

My daughter was diagnosed with Bipolar when she was only eight years old.  She has been on medication ever since. She was diagnosed with Autism two years later at the age of 10.  She is now 17 years old.  She was hospitalized when she was 15 years old due to going into psychosis.  She had been essentially stuck in a depressive state for some time and then had a breakthrough manic state.  The combination sent her into psychosis.  The voices told her she had to hurt herself with a knife and then the voices told her to use fire.  She never did and insisted that she could keep fighting the voices, but we managed to convince her to go to the hospital where she stayed for a week in the youth psychiatric ward.  Three months later a space opened up at a long-term treatment facility for youth.  She went into long-term care as an outpatient for three months.  Her medications were straightened out and a new treatment plan was developed for her to be used by her counselor, occupational therapist, and her speech therapist.

Then there is me.  I was diagnosed with Autism after my children were at the age of 36. 

Depression and mainly anxiety have been a part of my life for as long as I remember, but no one talked about it.  I didn’t have the words I needed to use growing up to describe why I felt the way I did.  I was told to lighten up, to stop taking things so seriously.  I was yelled at if I cried.  I was conditioned to not show emotions or to ask for help.  I was also conditioned that my needs didn’t matter.  I was on my own and told to take care of my younger sister who was only two years younger than me.  Alone, that was how I felt for so damn long.  No one listened when I tried to reach out, so I stopped reaching out.  I withdrew into myself, which only isolated me more, because my family either didn’t know what to do with me or took it personally that I had withdrawn, so I was ignored.  I was an undiagnosed autistic child with undiagnosed mental health issues. 

I grew up in a toxic home, but I didn’t realize it.  All I knew was something was off, but I never could figure it out.  I was told I was loved, but I felt so alone and I was scared.  I felt silenced.  What I wanted never seemed to matter.  I was conditioned to comply.  I had no idea how to say “no” or how to advocate for myself.  I was to comply with the wishes of others and rules were rules.

I didn’t know anything about emotional abuse until I was required to take a class for my professional certification as a teacher.  Even then, my mind just couldn’t accept that I had come from an abusive home life.  No, it couldn’t be.  There were other reasons for the behavior, always an excuse, excuses I had heard as a child growing up, excuses I was taught to just accept without question.     

By the time I took this class, I was already married and a parent.  I also hadn’t realized that I had married into an emotionally abusive marriage.  I married what I knew.

For more information – Invisible Scars – A Tale of Emotional Abuse

About 15 years ago, I went through a horrible medical trauma that was made worse by my family’s behavior.  More information can be found here – The Volcano is Awake. There was a time that I wanted to die so the pain would end, but I was never suicidal. I reached out for help so many times, but I was told get over it, bury it, move on.  I would reach out and get a cold shoulder or a back turned to me.  I had to get myself through that dark time of my life on my own and I would never wish that torture on anyone.  What got me through was that I couldn’t leave my children without a mother.  They were only a baby and a toddler at the time and something inside me kept saying that there was no one else to take care of them.  It was my responsibility as a mother that pulled me out and in the process “mama bear” emerged.  I had reached my breaking point, but never fully broke.   I became stronger, but in the process of working my way out of the darkness, I learned I had developed Complex – PTSD.  

Reach outWhen my marriage ended, I once again reached out for help, but was met with the same cold shoulders and told to move on, get over it, stuff it away. As with my medical trauma, I was not allowed to grieve in the way and for the length that I needed to.  I had become an inconvenience, a burden, again.  Once again I found myself alone with two children, teenagers now, and I had to get through the emotional pain of having my family ripped apart, but this time I was going to do things on my terms.  By this time I had learned about self-advocacy and self-determination.  I drew the line and held those boundaries. 

I reached out to others outside my family.  It took time, but I eventually developed a support network that is primarily online.  I am in a better place now, but my children and I are still grieving.  We are getting there, though.  We are much better than where we were a few years ago, but the depression is still there.  It has never fully gone away and I don’t know if it ever will. 

I have tried to create an environment where my children can feel safe talking about how they feel. I want them to feel that there is someone who will listen to them, who feels their voice is important, and who will never give them a cold shoulder and tell them to get over it and move on.  I remind them often that they each have a whole care team rooting for them.  I want them to know they are not alone.   

There is still too much stigma around mental illness. In 9 Ways to Fight Mental Health Stigma, Laura Greenstein states, “Stigma causes people to feel ashamed for something that is out of their control. Worst of all, stigma prevents people from seeking the help they need. For a group of people who already carry such a heavy burden, stigma is an unacceptable addition to their pain. And while stigma has reduced in recent years, the pace of progress has not been quick enough.” 

As a society, we need to do better.  We can’t just post about a suicide or crisis hotlines only during a time when a celebrity commits suicide.  We can’t just think posting these hotline numbers are enough. 

What is mental health stigma?

Mental health stigma can be divided into two distinct types:

  • social stigma is characterized by prejudicial attitudes and discriminating behavior directed towards individuals with mental health problems as a result of the psychiatric label they have been given.
  • perceived stigma or self-stigma is the internalizing by the mental health sufferer of their perceptions of discrimination and perceived stigma can significantly affect feelings of shame and lead to poorer treatment outcomes.

How can we eliminate stigma?

People tend to hold negative beliefs about mental health problems regardless of their age, regardless of what knowledge they have of mental health problems, and regardless of whether they know someone who has a mental health problem.

 “The fact that such negative attitudes appear to be so entrenched suggests that campaigns to change these beliefs will have to be multifaceted, will have to do more than just impart knowledge about mental health problems, and will need to challenge existing negative stereotypes especially as they are portrayed in the general media.” – Graham C.L. Davey, Ph.D

According to National Alliance on Mental Illness (NAMI), stigma harms the 1 in 5 Americans affected by mental health conditions. It shames them into silence and prevents them from seeking help. People need to feel safe talking about mental illness, so here I am talking about mental illness in a public forum.  I do not feel shame.  I do not feel embarrassed. I am not a burden. I refuse to be silenced.  I want people to know that they are not alone. End the stigma!!

Educate Yourself and Others – Learn More

“Everyone knows a little about mental health issues but knowing the facts can help you educate others and reject stigmatizing stereotypes. They are not the result of personal weakness, lack of character or poor upbringing. Understanding mental health isn’t only about being able to identify symptoms and having a name for conditions, but dispelling false ideas about mental health conditions as well.” – NAMI

To Those Who Still Don’t Understand

(Content Warning: medical problems, references to death, suicide, murder)

I came across an article by Sarah Kurchak today, entitled To Neurotypicals On My 36th Birthday and it really resonated where my thoughts have been lately.  I commented on the article, but I felt I needed to expand my comment.

I have tried to live a healthy life style all my life.  I don’t drink alcohol, I don’t smoke, I don’t do recreational drugs, I try to eat right, and I am I runner.  Unfortunately, the statistics are not on my side.  Due to my genetics, my life expectancy has been shortened. 

As the aforementioned article states, the ages for the life expectancy of autistics vary a bit, but the statistics point to an uncomfortable reality.  Autistic life spans are shorter than typical life spans.  A study out of Sweden completed late in 2015, entitled Premature mortality in autism spectrum disorder, revealed that people with autism died an average of 16 years earlier than those who do not have autism.  There are other studies out there that support the Swedish study findings. 

Why is it this way?  Why do autistics seem to die younger than those who are not autistic?

Previous studies had shown that 30 percent to 50 percent of people with ASD have considered suicide at some point in their lives.  Bullying, anxiety, depression, feelings of isolation and alienation all contribute to this.  There is a high cost trying to cope in a world that is not designed for you nor is accepting of you.

Then there are the co-existing conditions that seem to be common to people with autism. Chronic health problems can shorten a person’s life span.  Epilepsy, Elhers-Danlos Syndrome (EDS), gastrointestinal problems, sensory overload, and lots of stress related illnesses, which can lead to physical ailments, including heart disease, brain inflammation, strokes, and diabetes – these seem to be common occurrences in the lives of autistic people.  

I was diagnosed when I was 36 years old. This is the same age that the article is focusing on, the same age that the researchers CNN cites say is the average age that people like me die. 

I am a teacher and have been for almost 20 years. During the 2011-2012 school year, the same year I was diagnosed, my doctor told me that my stress was actually killing me. This is why I don’t have a classroom of my own anymore. I was very fortunate to be able to find employment where I can work predominately from home, but still keeps me in the education field. I don’t know if I will ever be able to return to the classroom on a regular daily basis.

Due to EDS, my body has been falling apart all my life. I have been a runner for 24 years. It has kept me out of a wheel chair. I had to stop backpacking and weight lifting long ago. I have had to garden in pots for years now (doctors’ orders). I am not even supposed to push a grocery cart anymore, because the right side of my diaphragm is no longer securely attached.

I don’t know how much longer my body and mind can take. Stress can literally kill you. I am so tired. I do know that whenever I just what to collapse, my body won’t. It has got a lot of fight in it still, though. When everything went to hell at 21 weeks when I was pregnant with my son, my body gave everything it had to keep him alive. He was born healthy and to term. That was 15 years ago and my body has never fully recovered. I am still bleeding internally with significant nerve and tissue damage.

I am 42 years old now and I don’t know how much longer I have. So, I will just keep carrying on the best I can with the time I have.

Looking through my old writings, I see that this carry-on-attitude is found all over.  I mean, what else can I do, but to keep moving forward? I am a single mom for two teenagers.  I don’t feel there is much choice in the matter.  The only other option that I see is giving up and dying.  My resilience is too strong, which I explain in “Strengths of Autism – Resilience”.  My body won’t let me give up, so I keep going. 

In The Hidden Meaning Behind “I’m Tired”,  I explain that the phrase “I’m tired” is just a cover for a long story of struggle, confusion, stress, frustration, pain, and exhaustion.  I am always tired.  It never seems to go away and it has only gotten worse as I have gotten older.

In September 2017, I came across this meme with a quote by Dr. Shana Nichols:

Females with ASD“Females with ASDs often develop ‘coping mechanisms’ that can cover up the intrinsic difficulties they experience. They may mimic their peers, watch from the sidelines, use their intellect to figure out the best ways to remain undetected, and they will study, practice, and learn appropriate approaches to social situations. Sounds easy enough, but in fact these strategies take a lot of work and can more often than not lead to exhaustion, withdrawal, anxiety, selective mutism, and depression. -Dr. Shana Nichols”

How long can a body maintain a perpetual cycle of burnout, stress, and pain? 

I really don’t know. 

Something my children’s psychiatrist told us this past week:

ARC – Autistic Renewal Cycle

ABC – Autistic Burnout Cycle

They need to acknowledge ABC, but focus on ARC. Both are in ABC right now. As a family, we need to find ways to break the ABC using ARC.

I have struggled with ABC for so long. Every year I would find myself in some level of autistic burnout. I need to break the cycle, too.

What the ARC looks like depends on the individual. Basically, an individual needs to be encouraged and provided opportunities to do activities that fuel them, that give back emotional currency.

Being stuck in ABC can potentially shorten a person’s life.  The cycle must be broken, but that is not a easy thing to do.  How does one fuel their emotional currency?

Personally, I feel it has a lot to do with acceptance.  I feel acceptance is the greatest gift you can give to a person. 

According to Rick Hanson Ph.D.:

“Accepting people does not itself mean agreeing with them, approving of them, waiving your own rights, or downplaying their impact upon you. You can still take appropriate actions to protect or support yourself or others. Or you can simply let people be. Either way, you accept the reality of the other person. You may not like it, you may not prefer it, you may feel sad or angry about it, but at a deeper level, you are at peace with it. That alone is a blessing. And sometimes, your shift to acceptance can help things get better.”

Acceptance is an action and it requires work.  Kassiane S. explains this concept beautifully in Acceptance vs. Awareness:

“Acceptance comes from a place of understanding.  Understanding isn’t generated by soundbites and posterchildren. Understanding takes work. To accept us, people first need to acknowledge us as individuals-as three dimensional, growing, developed characters. We are not all the same, and we are not but a collection of deficits. Acceptance is seeing that-and seeing that one’s distaste for an autistic person is more likely than not because of “autism”. Awareness tells you that anything objectionable about us is “autism”, but that explanation is clear, simple, and wrong.

Acceptance requires facing that which makes you uncomfortable about us, thinking about why it makes you uncomfortable, and confronting any prejudice at the root of that discomfort. To accept us is to make a conscious effort to overcome that prejudice, to recognize that your discomfort with our differences is far more your problem to overcome than ours.”

In Accept Them As They Are, Dr. Hanson continues to explain how you find acceptance:

“Consider how you have gotten tangled up with this other person, struggling to change them. When I do this myself, I become aware of my own rightness, positionality, judgments, pushiness, irritability, narrow views, hurts, longings, grievances, or remorse. See if you can let go of some, even all of these entanglements. Open to the easing, relief, and peace that can come when you do.

Also consider how much you like it when you feel that another person accepts you completely. It’s a beautiful gift – and we can give it ourselves to others when we accept them. Imagine how it might improve your relationship with someone if that person felt you accepted him or her fully. Acceptance is a gift that gives back.”

I am so very tired of fighting just to survive. I explained this in So, how does it feel to actually live your life as opposed to just surviving?  I chose years ago to live in the moment, because I don’t know how any moments I have left. 

When people want to push the idea that there is a supposed autism epidemic (there isn’t), I have found the question that will inevitably come up is, “If there is no epidemic, then where are all the autistic adults?”

Autistic adults are there and have been there since there have been people.  From what I have learned, autistic adults seem to disappear either by choice or design.  As they age, they either remove themselves from society to get away from the unrelenting life killing stress or they die at a much younger age than non-autistic adults.  The question really should be, “If autistic adults have always been there, then why are you not seeing us?”  

In closing, I would like to reiterate what Sarah Kurchak stated in her article about what to do if you want to help and add a few words of my own.

  • Listen to us.
  • Believe in us.
  • Let us be our authentic autistic selves.
  • Invest in our work.
  • Invest in science and actions that actually make our lives better now instead of chasing a hypothetical cure.
  • Meet us halfway, we can’t do all the work to conform to your world. Compromises need to be made and bridges need to be built. Help us build that bridge.
  • Tell us you accept us and mean it!
  • Tell us we don’t bore you.
  • Tell us we don’t drain you.
  • Tell us we are not broken.
  • Tell us we are not a burden.
  • And above all, don’t kill us.

So, how does it feel to actually live your life as opposed to just surviving?      

Have you ever been struggling for so damn long, then find yourself in a situation where things are working out, but your anxiety has gotten you on guard waiting for the possibility of the rug of life to be pulled out from under you again?

Ya, I am there. It sucks the feeling of relief right out of you. It is really annoying. I keep telling myself that I am in a good place right now, that everything I have been working toward professionally all these years is finally starting to materialize and it is not literally killing me in the process, but my damn brain won’t settle.

There are many reasons why I no longer have my own classroom anymore. Due to my physical health, I don’t know if I ever will be able return to a regular classroom teaching position. After nearly 20 years as a teacher, I miss being in a classroom, but my current job is allowing me to stay in the education field and apply my experience and training in a different way by helping one family at a time. I am paying it forward, you might say.

I am still grieving in my personal life. I have been grieving for years. It feels like forever. It is called Complex-PTSD. Even 15 years after my initial diagnosis, the pain is still there.  I have better coping skills now, but it is still hard. These days there are more good days than bad days.

Too much trauma and loss in my life, I suppose. I have been struggling so long just to survive, and be both mom and dad as well as teacher to my children, that I guess I am not sure how to live.

After everything that has happened to me, I have really struggled to convince myself that I have worth. I remind myself constantly. I have worth. I know I have worth.

*Deep breath.*

*Start again.*

I have value. I am worth it. I will not give up!

*Punches chest.*

I am a real person with real needs and dreams. I will not be silenced!

Not again . . .

—————————

Looking at Maslow’s Hierarchy of Needs, I have been at the bottom two levels for many years now.

So, how does it feel to actually live your life as opposed to just surviving?  

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The Invisible Torturer

Anxiety ImageAnxiety, why do you torture me so?

The shaking,

The heavy breathing of panic, 

The buzzing in my brain that exercise doesn’t subdue,

The pounding stims that have started up,

The flicking fingers that will not still,

Anxiety, just stop!!

 

What is behind all this anguish?

I want to escape, but escape from what?

My senses are heightened for why I do not know.

My feet and legs want to run, and run, and run.  

But where?   

There is no destination that will take me away this.

The torturer is inside me.

 

Anxiety, let me go!

I want to be free, but you are too strong.

Your invisible claws have enclosed around me.

No one sees my torment, for you have taught me to hide.

I must hide this agony, because no one believes me.

I am told I am being silly, that it is nothing, that there really isn’t a problem.

So, I suffer in silence and go about my day.

 

For me, Anxiety and Depression tend to go hand in hand.

I continue to fight against Anxiety and it wears me down.

Depression moves in due to my weakened state.

I am being attacked on all sides.

Yet, no one sees this battle, for the battle is inside me.

I cry, I yell, I run, I write, I make art.

I do this to fight the never ending onslaught of Anxiety.

 

I am weary in this battle.

There are days Anxiety gets the upper hand.

More days than I would like to admit, but I persevere.

Battles may be lost, but I carry on to fight another day.

Because loosing this war is not an option.

I will not allow Anxiety to be victorious.

So I take deep breaths, I center myself, and I continue on.

 

(Image is of a drawing of woman in a dress sitting down while covering her face. Artist is  Clara Lieu.)