Borrowed Time

I am living on borrowed time. What do I mean by that?

I wrote an blog back in 2018 titled, To Those Who Still Don’t Understand, and it focused on how people with autism died an average of 16 years earlier than those who do not have autism. The Swedish study that determined this discovered the average life expectancy for the general population was about 70 years old compared to the ASD group, which was about 54 years old. They also found that people with ASD who also had cognitive disabilities had an average life expectancy just under 40 years old. This study was completed in 2015.

Maurizio Cigognetti/Getty Images

The researchers of the 2015 study reported suicide as being one of the leading causes of early death among people with ASD. They concluded that suicide rates of people with ASD who had no cognitive disability were nine times higher than the general population with suicide rate being higher among girls with ASD. Previous studies have shown that 30 percent to 50 percent of people with ASD have considered suicide. I am included in this statistic and so is my daughter. My son has struggled with self-harming with non-suicidal thoughts and not feeling hope for the future.

In the eight years since the Swedish study, things haven’t gotten any better. In 2021, Kõlves et al determined that the rate of suicide attempts increased with the age at first diagnosis, with the highest age-based suicide rate in autism for individuals aged 30 to 39 years.  Amy Marschall, PsyD, stated in 2022, that the average global life expectancy is approximately 72 years old. For autistic people, however, the average life expectancy ranges from 39.5 years to 58 years. There is a serious problem happening in the autistic community.

Suicide isn’t the only thing having an impact on autistic life expectancy. Every year, March 1^st is known as the Disability Community Day of Mourning. On this day, the disability community gathers across the nation to remember disabled victims of filicide, meaning disabled people who have been murdered by their family members or caregivers. According to the Autistic Self Advocacy Network (ASAN), in the past five years, over 550 people with disabilities have been murdered by their parents. Active cataloging of cases started in mid-2014 and The Disability Day of Mourning website contains cases from 1980 to the present.

Autistic people often have co-existing conditions that can also shorten life expectancy. Compared to non-autistic people, autistics are at higher risk for several genetic disorders, including Down syndrome, muscular dystrophy, and Fragile X syndrome and are more likely to experience neurological disorders such as epilepsy and hydrocephalus, sleep disorders, and gastrointestinal disorders. Autistic people are also at higher risk for mental health issues, including anxiety, depression, psychotic disorders, and trauma disorders.

Bullying, conforming to societal expectations, masking, constant burnout, not being employed and under-employment, isolation, low socioeconomic status, and “treatments” that are often recommended for autistic people that put an emphasis on compliance and covering up autistic behaviors can have a huge emotional cost that can lead to physical ailments, including heart disease, brain inflammation, strokes, and diabetes.

I have multiple anxiety disorders including Complex-PTSD. I also have Ehlers-Danlos Syndrome (EDS) and have been in chronic pain since I was 14 years old. I have the Hypermobile EDS type. My body has been slowly degrading and there is no cure. Studies have indicated that there is a relationship between Autism and EDS, even going as far as proposing that hereditary connective tissue disorders represent a subtype of autism whose prevalence is currently unknown.

My gastrointestinal problem is connected to my EDS. I had complications with both my pregnancies, with my son’s pregnancy being the worst. I have written about it before – The Volcano is Awake.

I was told about ten years ago that my digestive system was shutting down and I faced the real possibility that my entire large intestine would need to be removed. Fortunately, my doctor at the time learned of a new medication that was different from all the others that she had had me on that had failed. This medication triggered the body to make an enzyme that would essentially make my digestive system into a slippery slide. The medication jump started my digestive system, and I eventually was able to get off it, but I had to remain on large dosages of antiacids due to having severe acid reflux. The years go by, and I am once again having problems with my digestive system, but this time it is higher.

The antiacid is no longer working and my stomach lining and small intestine lining are being eaten away, which means I am moving into possible ulcer territory. This is also aggravating my diaphragm resulting in significant muscle spams radiating into my chest resulting in severe pain and trouble breathing. I ended up in the emergency room (ER) this week due to what has been happening. The idea of going to an ER triggered a panic attack. It has been three days since I went to the ER and I still want to hide. I have been unable to settle my nervous system.

I am so tired of all of this. I am tired of the constant pain, not being able to sleep well, or even eat much. I feel I am living on borrowed time, and I don’t know how much time I have left. Some would say, “Do any of us know how much time we have left?” I understand what they are saying, but I am experiencing the loss of function of my body along with the loss of functioning in general due to constant burnout.

I have been writing about burnout since 2012. My burnout is ongoing and fluctuates depending on my level of prolonged stress and prolonged pain level. In 2015, I wrote Social Skills and Depression. At the time, I was working on my first MEd in Autism Education and this article developed from a discussion prompt I was assigned to in one of my classes – “Research suggests that depression begins in the onset of early adolescence for kids with ASD and is prompted by the stressors of increasing social demands.”

In this blog I wrote, “Depression is something that is common among autistic individuals, my family is no different. What we have to keep in mind is that not all depression has the same cause and not all depression is expressed in the same manner, especially in people with Autism.”

I also included this quote, “There are diagnostic difficulties when considering depression in autism and Asperger syndrome, as the characteristics of these disorders, such as social withdrawal and appetite and sleep disturbance, are also core symptoms of depression. Impaired verbal and non-verbal communication can mask the symptoms of depression. Symptoms associated with autism and Asperger syndrome such as obsessionality and self-injury may be increased during an episode of depression.” (Stewart et. al., 2014)

Am I experiencing depression? Maybe, but it is never one thing. Is this grief mixed with anxiety? I don’t know. I just want to cover my head, fall to the ground in a ball, rock and hit my head with my fists. This sounds more like being overwhelmed and being in fight/flight/freeze/fawn response. I feel like I need to cry, but once again the crying feels stuck. I need to run and keep running, again with the flight response. Run, hide, flee, get away, leave me alone!!

I hate feeling this way. I feel like I am vibrating inside, irritable, detached from myself, yet feeling incredibly fatigued, not able to handle sensory input well, and in a lot of physical pain. It is a workday tomorrow and I already feel the drain of the mask that I will be putting on to make it through the day.

I don’t have an answer on how to address my ongoing burnout. I am a parent, I have responsibilities. I only have so much sick time and my vacation time is being used later this summer. I understand that I need an extended amount of time to allow my body to shut down to recover, but I can’t afford that luxury.

The way our society is designed won’t allow me to take care of myself the way I need to. Our society is not designed to help keep autistic people alive and able to function well. I will be 48 in June, and I was already considered an autistic elder in my early 40s even though I have only been officially diagnosed for about 11 years. Based on the 2022 statistics, I am ten years away from the high end of the average life expectancy of an autistic person and my health continues to decline.

I am living on borrowed time, and I don’t know how much time I have left.

Finding a Way to Grieve

Ripples in a pool of water gliding across the surface growing wider and wider apart. Rain drops gently falling from the sky. The smell of freshness in the air. The world being cleansed by a gentle Spring storm. I find myself walking a muddy trail beneath the green trees wishing to be cleansed as well.

Grief is hard. Grieving is even harder. I need to let my grief flow out away from me like ripples on a pond, but I don’t seem to be able to. I am stuck in my grief, unable to grieve.

I sit listening to gentle instrumental music, allowing myself to flow with the sounds while I try to reach that place inside me where the grief is trapped. I can feel it there, but I can’t seem to reach it. I need to find the key to let it out so that I can openly grieve and find relief.

I place my hand on the spot on my chest where I can feel the grief, that never ending ache, that wound that won’t heal. I wish I could find a doorway to that spot so that I could hug that hurt person that I am.

I am never going to be able to have the relationship with my family that I want, but that hurt child is still clinging to hope that some day mommy will see me for who I am, that daddy won’t be so scary, and that my sibling won’t be afraid of me.

I am autistic with Complex-PTSD stemming from a deep attachment wound that began forming in childhood. I am not scary nor unfeeling nor difficult nor a burden. I am not a disappointment nor am I broken. I am human with human emotions. Expressing those emotions is not a bad thing. Just because I respond differently to a given situation doesn’t make me wrong or ridiculous or uncaring. Having a normal reaction to an abnormal situation doesn’t make me unpredictable or scary just because I don’t hide it or don’t sugar coat it.

I have needs just like everyone else. My needs just happen to be different from what would be typically expected. This doesn’t make me any less capable of feeling everything everyone else feels. I don’t have an anger problem. I am not full of vitriol. I have boundaries. I will not be shamed into submission.

Hope is a funny thing. Hope keeps you going, but it can also trap you. For so long, all I wanted was to be seen for who I really am and not some image that someone else has. All my life I have been a square peg being shoved into a round hole by societal expectations as well as by expectations of others who didn’t understand that I wasn’t like them. For most of my life I have felt I needed to prove myself. If I could just do enough maybe, just maybe, I would be seen for who I am and accepted. I held on to hope.

Unfortunately, there is never going to be “enough” to be done to find that acceptance. Unbeknownst to me, I was born into a mix match environment. This was not anyone’s fault. This happens sometimes, a child born into a family where they don’t match with the overall expectations of the home. The core values of the child and the family don’t match up. The child doesn’t understand this. Their “normal”, the life they were born into, feels wrong. Something is off, but they don’t have the words to describe it. The child just feels that they are at fault.

There are two ways things can progress with this child. They can either lash out against those around them out of frustration, anger, and hurt and pushing away people or they can retreat into themselves, submit, and try to be everything everyone else wants them to be. I retreated, locked myself away deep inside, and stayed hidden. Life wasn’t safe for me. The world was a confusing place, and I didn’t have the guidance that I needed to make sense of it.

I retreated in my mind, walling up my heart to protect it. What others around me saw was a stoic, quiet child who grew up to be the same as an adult. I then married what I knew, which only worsened things for me. I learned the hard way what domestic abuse is. After 15 years, I realized that I was in an emotionally neglectful and emotionally and mentally abusive marriage, but I still couldn’t put words towards that “off” feeling that I was still experiencing with my own family.  What finally woke me up was when my children’s counselors informed me that they had asked them why grandma and grandpa treat me the way they do. My children recognized what had been happening to me when I couldn’t. I decided that I didn’t want to live like that. Perpetually in fight/flight/freeze/fawn was not where I wanted to exist. I decided that things needed to change, but I needed the time and space to make that change so that I could heal.

The estrangement from my family began in the Spring of 2015. That was one of the hardest things that I have ever done, and it didn’t happen overnight. It took years to reach that decision and only after my first marriage failed and all other options for reconciliation and understanding with my family had failed. It is now the Spring of 2023, eight years since I drew that line. So much has changed in those eight years. Good things have happened, but not without tremendous stress and heartache.

I find that I am on the other side of all those difficult times and on a path to better things, a better life. Safety has always been my requirement. Safety for myself and for my children. With all my grief, I couldn’t actively grieve due to feeling unsafe. Now I must find a way to release my grief so that I can live that better life. I can’t move on until I can let go. My grief is like an anchor weighing me down. I can’t move because that grief is still there.

I realize now that I have been using that grief as fuel to keep me going through all the hard times. I also realize that I am afraid to feel that grief because my senses focus inward cutting me off from what is around me. I am afraid to let my guard down to grieve, but I must let this happen. I just don’t know how to.

I feel that space in my chest that was once so walled off that I had become numb. That space wants me to reach it. It is ready for me to embrace it, to sit with it, to acknowledge it and let it know that I am okay now. It did its job. I survived and so did my children. It’s time to let it go, but it hurts. It really hurts.

I lost so much over these many years, but I made it. I am here. Mommy is not going to make me feel better. That is my job. What happened to me was not my fault. The mix match was not my family’s fault. The unfortunate reality is that a deep attachment wound formed and it stayed with me well into adulthood. I am turning 48 this year and I am only now in a place where I feel I can grieve, if only I could open the door.

I have been crying as I write this. It is a different kind of crying than what has happened before as I write. I don’t feel I am coming to terms with something that happened to me or processing trauma. This crying feels like rain on a stormy Spring day. That light, rhythmic, tapping sound, that smell of Petrichor, that feeling of freshness in the air along with the slow ache of loss growing and being recognized in my chest. The world feels like it is slowing down as I breathe deep within myself.

Is this what grieving feels like?

Finding Myself

This writing is a product of using the process of storytelling to explain a recent trauma therapy session I had.  This particular session was a big eye opener for me. Even though it was very difficult to get through, I feel better for it. There is a sense of relief, like I released something very precious that had long been caged and was desperate to be free so that it could live as it needed to.

—————————————————-

Once a upon a time, there was a girl who was neither little or big, but was just right for where she was in the years before adulthood. This girl had matured and had reached a time when she would be seen to others as a young lady growing up into an individual person with hopes and dreams of her own. Unfortunately, she had been born into a world that expected sameness and conformity. She did not fit where she was expected to fit. She did not behave how she was expected to behave. She did not respond to people how she was expected to respond. She did not see the world how she was expected to see it.

Something bad happened when she was younger. A person close to her got hurt and she was blamed for it. It wasn’t her fault, though. She was just a little girl playing with other little girls, giggling and running around in the sunshine.  Another little girl was hurt in a door and the adults responsible for the little girl in this story couldn’t handle the situation. She learned she was a disappointment and she learned that to keep the yelling and screaming and being isolated from everyone from happening, she needed to do what was necessary to keep the home life calm.

The girl tried and tried and tried to be the person that those around her wanted her to be, but she couldn’t get there and never understood why. That scolding face of disappointment would follow her, eventually becoming a part of her, judging everything that she did and insisting that she had to keep pushing to do more and be better.

The girl found herself feeling that she had to take care of everything, to make sure everything was done to the best of her ability, or that feeling that she was going to die would consume her. The trauma of her early childhood, the continued scolding, the yelling that felt like she was being hit, and the feeling that she was never good enough, resulted in developing a fear of being a disappointment. The panic of being a disappointment was so strong that it felt like she was going to die if she wasn’t perfect. She never understood what that “perfect” was. All she knew was that she couldn’t be a disappointment, that she had to do well at everything, and that she needed to be the care provider.

Somewhere between being a little child  and becoming an adult, this girl broke away from her core-self and became trapped in this dark, barren rocky landscape devoid of any green with the black scorch of lava flowing like a waterfall behind her. As for the girl, she was stuck where she stood, her shoes turned to rock and she had no voice. No matter how much she screamed for help, no sound came. The scolding face took her voice away and trapped her in that horrible, dark, place where she could not move.

She was expected to be clean and proper, not questioning anything, and remaining attached to what was holding her in this place. She was not allowed to grow up and she was not allowed to become her own person.

She was to wear a 1950’s style light blue floral dress with white shoes and have her hair tied back into a neat pony tail. This was how she was expected to be even though this wasn’t her style and here she stayed cut-off from the rest of herself, frozen in place to serve the gravitation pull that lived under the surface below her feet.

The core-self of this girl knew she was there and kept fighting to set her free, but trauma kept subduing the flame of this core-self, fracturing the person that the core-self belonged to. The person grew into an adult, separated from many parts of herself while she tried to survive in a world that wasn’t designed for someone like her, a world that left her with a moral injury, complex trauma, and a sense of great loss and heartache.

The woman kept finding a way to keep going. Her resilience wouldn’t let her give up. She had to keep moving forward in life for herself and her children. The layers and layers of trauma muffled the spark of the core-self yet was not able to extinguish her flame that fueled her spirit. Her spirit glowed through the cracks and crevices reaching out into the world. This core-self could not be hushed, because this glow was her authentic self, her authentic voice, her values, and personality. This was where her power laid, and it refused to die out.

Over the years, the woman kept pushing through the pain, loss, and burnout, but is all became too much. She knew she needed help, because she felt she had reached a wall that she could not get over. She felt stuck in this never-ending spiral of trauma and crisis. She realized that she could not heal herself without assistance. She had to learn that there were pieces of herself that had been left behind, broken apart from her to help her survive. The woman didn’t want to just survive anymore, she wanted to live her life and experience all that actually living entailed. This meant she needed to face her trauma, and with guidance, reconnect with all her parts that had been left back in time.

The thing about trauma therapy is that it is not linear. Working through the layers is a long individual journey that is exhausting, eye-opening, and freeing all at the same time. Digging into the layers takes patience, understanding, and a lot of self-compassion. For this woman, digging into the layers required figuring out how to get to the other side of various fences, fog, voids, and shadowy places that her mind had created without judgement.

Going back in time in her mind was not a smooth straight line. Instead, it was choppy, confusing, overwhelming, and difficult to navigate. Her defenses had to be soothed and provided assurances before each attempt at processing a layer occurred. Once a fractured part of herself was found, then she needed to provide kindness and encouragement to that part, holding out a hand, which would eventually become a hug. Very little words were exchanged with the parts during these times of healing. There simply was a quiet understanding that the woman was going to be okay and that the part was not alone anymore. Reintegration of a fractured self is not an easy journey for the mind and the heart.

For this woman, reintegration meant learning how to reconnect with her heart, because she had been living in her brain. It took years to work down into younger and younger years. The woman went all the way down to when she reconnected with the little girl who was blamed, shamed, and left alone after another little girl was hurt. That pain of that shame and the fear of that yelling played a huge role in shaping how the woman navigated her world well into adulthood.

This woman also struggles with health problems that have required surgery. She has now had five surgeries to fix damage. Last month she faced that fifth surgery with much trepidation. Even though she knew that the surgery was not going to be as involved as her last (see The Volcano is Awake), and that she was going to have better support this time, she was very concerned, especially about the pain levels during recovery. There was not adequate pain management in place.

Surgery day came and everything went well. She did have a panic attack after waking up from the anesthesia, but her husband stayed by her side and helped her feel safe. He has not been her husband for very long, but she trusts him. The trauma trigger she expected to happen, the PTSD trigger from her last surgery, didn’t happen. What happened instead were flashbacks of a different kind.

These flashbacks left her trembling, irritable, and were happening at night while she slept. She could not understand what was happening. With guidance, she would learn about a place that she had no awareness of previously where she would find a piece of herself that she didn’t even know was missing.

She found the girl from the beginning of the story. The girl at first didn’t want the woman to come near. “Stay Away” was the feeling. The scolding face didn’t want the woman anywhere near the girl. The girl had a purpose and was expected to remain there. The other parts of the woman stayed away from the scolding face, they were scared of it. That scolding face left the woman with the feeling of “How dare you come here! She is not allowed to grow up!” Then the scolding face yelled at the other parts who had reconnected it the woman telling them to back off, but the woman persisted. That scolding face was not a part of her and the glow of that core-self swelled up so much that light burst from her and blew apart the scolding face. The other parts were thankful and the power within the woman grew.

Without judgement, she stayed in that place with the girl and gave space for the girl without a voice to show the woman what the girl needed.  

The girl wanted help. She didn’t want to be there, but felt great sadness about leaving the gravitational pull that held her in place all these years. The woman at first felt a lot of anxiety as she came closer to the girl. Whatever was beneath the girl’s feet was very strong and the woman feared it. The girl  showed the woman that she didn’t want a hand to be given to her like the other parts had. The girl showed the woman that she wanted a rope attached to a helicopter that would take her away from this place.

This might sound strange to those not familiar with trauma therapy. What the brain shows the person is not to be judged, but to be looked at with curiosity. The woman looked at that helicopter as the girl clung to the rope trying to free herself, but she could only get one foot out. The gravitational force below her feel was holding her so tightly that it was pulling her apart.

The woman took action and used the skills she knew to free the girls foot, then watched as the helicopter took her away toward there the light was in the sky, to where it was green. The girl was finally free.

The woman felt sadness and loss as her gaze moved to the spot where the girl once stood. There was a gap in the rock where it had crumbled, and the woman could see what had been holding the girl in place. It was a swirling blue-black hole and the woman could feel its need for someone to be there for it. This black hole was connected to that scolding face. This black hole was not part of the woman, but instead the codependency and enmeshment that had been forced upon the girl.  The girl had been taught that she had to be the stability of this black hole. The woman doesn’t believe that the black hole meant any harm, but harm is what it caused. The black hole begged the woman not to leave it. It didn’t know what to do without the girl.

The woman knew that it was not healthy to stay with this black hole. The girl was now free, and the woman needed to walk away as well. With guidance, the woman build scaffolding around the black hole where it could still be seen, but could not pull with so much force. It needed to live on its own. It was not the woman’s job to take care of it, to keep it calm, or to stabilize it.

With that, the woman walked away and the feeling of grief fell over her. She realized that she was walking away from something that was important to her and that she was saying goodbye. As the days past, the woman realized her anxiety was down and that she felt lighter, like some sort of weight had been lifted. She was no loner trembling and feeling irritable. She felt a sense of peace. She had found something within herself that she didn’t even know she has been missing.

As she talked with her husband about her experience, she realized that the girl was being used a doll to bring comfort to another in her life. The doll was not allowed to become her own person and was expected to meet the needs of the other at the expense of her own. The woman does not believe there was malice in the other. In fact, the woman believes that the other has trauma of their own that has never been dealt with. Simply buried and ignored. This other person doesn’t understand that feelings are not bad or good, they just are. Feelings are messages that your body is sending to you.

Allowing yourself to feel all your emotions is not a bad thing and to process the trauma does not erase the good memories. Trying to always see the world through rose tinted glasses doesn’t make the bad stuff go away.  Thinking you need to make sure everything is taken care of and always focusing on keeping things calm only enables unhealthy coping mechanisms.

Codependency is also known as “relationship addiction” because people with codependency often form or maintain relationships that are one-sided, emotionally destructive and/or abusive. The girl in the story was conditioned to be a codependent by two adults that have layers of maladaptive coping mechanisms of their own that developed over years due to their own trauma. She was placed in this enmeshment situation without her consent and shame and guilt was used to keep her there.

Generational trauma is a real thing. “[Generational trauma] can be silent, covert, and undefined, surfacing through nuances and inadvertently taught or implied throughout someone’s life from an early age onward,” licensed clinical psychologist and parenting evaluator Melanie English, PhD, said to Health.  

The girl was caught up in the affects of trauma that happened long before she was born. The effects of that trauma then became a part of her through no fault of her own. It was placed on her through unattainable expectations and fear of rejection from the other who had unwittingly trapped the girl in that hellish landscape with no voice.

That girl was me. I am the woman who had been working diligently trying to reintegrate all the pieces of myself so that my core-self can be whole again.

Below are some images I found that help illustrate the images that came up in my mind as I was processing the flashbacks I was experiencing after my latest surgery:

This is what the girl was dressed as, but with the floral blue dress, white shoes, no belt. Clean, proper, and quiet.

This is what the hellscape looked like that the girl was trapped in and what the blue-black hole looked like.

This is what I see myself, my true authentic self.

With wild, flowing hair and having the power in my own hands to heal myself. My wings had been clipped for so long, but now I feel them whole. I can move them and stretch them out.

My core-self is a warrior, powerful and true. It kept trying to connect with me no matter how exhausted I became over the years. My core-self had been cut-off from me for most of my life. I had no idea what it looked like, but I have always felt like my wings should be there. I have written many times over the years about flying free, trying so hard to stretch out my wings, but never quite able to do it. The unprocessed trauma, the cracks, and missing pieces within myself were keeping me in place. I couldn’t fly without all my pieces. My wings wouldn’t work without connecting to my whole self.

I feel closer to that core-self now than I have ever been. I am not out of the woods yet, though. Recovery is a journey with no clear end. The grief is still there, and I need to allow myself to feel it and to grieve openly along with my children. We need to allow ourselves to grieve as a family and not judge it and not hide it out of shame or embarrassment. We experienced trauma together and we need to safely grieve together supporting each other in the process.

“There is no timestamp on trauma. There isn’t a formula that you can insert yourself into to get from horror to healed. Be patient. Take up space. Let your journey be the balm.” – Dawn Serra

Autistic Burnout – Here we go again!

I am sitting here upset with myself because I ended up in Autistic Burnout AGAIN!!  I have been in this situation several times in my life, and it sucks every time. Autistic Burnout: The Cost of Masking and Passing provides a long list of different sources defining and describing what autistic burnout is.  Here are a few quotes:

“Autistic burnout is a state of physical and mental fatigue, heightened stress, and diminished capacity to manage life skills, sensory input, and/or social interactions, which comes from years of being severely overtaxed by the strain of trying to live up to demands that are out of sync with our needs.”

AUTISTIC BURNOUT: “MY PHYSICAL BODY AND MIND STARTED SHUTTING DOWN”

‘“A state of pervasive exhaustion, loss of function, increase in autistic traits, and withdrawal from life that results from continuously expending more resources than one has coping with activities and environments ill-suited to one’s abilities and needs.” In other words, autistic burnout is the result of being asked to continuously do more than one is capable of without sufficient means for recovery.”

THINKING PERSON’S GUIDE TO AUTISM: Autistic Burnout: An Interview With Researcher Dora Raymaker

“Being autistic means a lifetime of fluid adaptation. We get a handle on something, develop coping strategies, adapt and we’re good. If life changes, we many need some time to readapt. Find the new pattern. Figure out the rules. Test out strategies to see what works. In the meantime, other things may fall apart. We lose skills. We struggle to cope with things that had previously been doable under more predictable conditions. This is not regression to an earlier developmental stage, it’s a process of adapting to new challenges and it’s one that we do across a lifetime of being autistic.”

AUTISTIC REGRESSION AND FLUID ADAPTATION | MUSINGS OF AN ASPIE

Purple Ella posted a video in 2021 talking about Autistic Burnout and what to do about it.

In her video, Purple Ella talked about the adrenaline surges when an autistic person tries to push through the exhaustion and other warning signs of impending burnout. I recognized this behavior in me right away. I do this all the time! Why do I do this? Why do I intentionally keep myself fin this agonizing loop of burnout and forced recovery? I use the word “forced” because my body decided that I was going to go into recovery mode whether I wanted to or not.

I feel it is the expectations of life that keep me stuck in this loop. I was diagnosed in my mid-thirties. I was already stuck in this cycle long before I learned what was going on. As Purple Ella stated, it is very hard to get out of the cycle once you are in it. For me, I don’t know how else to function in this world that isn’t designed for someone like me. Push, push, push, burnout, crash, recover (but not fully), the get up and do it all over again. There never seems to be enough time to full recover. The US system won’t allow for proper rest and recovery time. Bills need to be paid. Rent needs to be paid. Little to no sick time and no vacation time. Work, work, work or go homeless.

I raised my two children on my own. I didn’t have the luxury of taking time off to focus on my health, so I pushed and kept pushing. This caused considerable damage to me, and I am paying the price for it.  I have been a certified teacher for 24 years, maintaining my credentials since 1998, but I haven’t been a full-time teacher nor had my own classroom in a school building since the 2011-2012 school year. I was no longer able to teach in the manner that I was accustomed to in the environment that I had been trained to do. I was raised in the public school system, trained to teach in the public school system, and spent most of my career in the public school system. Unfortunately, me being in that system for so long resulted in me developing a moral injury. It took years in trauma counseling for me to understand what had happened to me.

Here is more information on teachers and moral injury -> Teachers Often Experience ‘Moral Injury’ on the Job, Study Finds

I feel I was born to teach, so I have kept teaching, but in a different way more suitable to my needs and core values. I moved into the nonprofit world and became a trainer, presenter, peer support provider, and resource and information provider. First, I was a parent advocate where I assisted families with children with disabilities navigate the education system. My kids grew up, so I adapted and became an independent living advocate assisting people with disabilities to live as independently as the want to where they want to.

This brings us to where I am today. I really thought I had been holding the line. I recognized the warning signs and was practicing my mindfulness strategies, taking time to rest (when I could), exercising, working with my counselor, building support within the nonprofit that I work for, making sure that I was eating and drinking even though I didn’t have much of an appetite and doing everything that I have been taught to do, but it wasn’t enough. Not this time. I had been running a race, keeping myself in front of the burnout, but just one more extra stress tipped the scales and burnout caught up and tackled me to the ground.

The day it hit me, it felt like my body forgot how to breathe. I had no energy to even cry. I was in sensory and emotional overload. My stress was so high that I was nauseous and vomiting.  It took everything just to move enough to get out of bed and walk to the bathroom. I crashed hard!

I keep asking what did I miss? What could have prevented this? I am coming up blank. I understand that my stress has been chronically high for some time now, but the problem has consistently been determining what I can remove from my life to reduce the stress. My doctor and counselor don’t know either. This is my life. I normally have 110 things going on all at once that all need to be taken care of and there is a distinct lack of resources and support for people struggling with disability and parenthood and trauma and work and general life responsibilities.

Our society does not allow for much deviation from the standard expectation of those who are considered neuronormative. I am not by any means “neuronormative”, but I have been conditioned to mask myself and present as a neuronormative person. This conditioning only feeds into autistic burnout. Out society has been setup in a way that keeps people stuck in perpetual burnout, using people up and then discarding them when they can no longer be productive in the support of Capitalism.

Here is a poignant quote from Emergent Divergent:

“Society has been designed to fit the majority, with minority neurocognitive identities being marginalised and oppressed. This oppression has lead to the disability of neurocognitive styles that do not fit into neuronormative standards. We are not awarded the same access to our environment as neurotypical minds.

This lack of access has lead to Autistic people having a lower economic value, and a greater perceived cost to society. When you deny people access to work, they can’t produce profit or pay taxes, but you still have to keep those pesky human rights.

Thus we have the origins of functioning labels.

Whether people care to admit it or not, they measure the economic value of the Autistic person. People deemed “high functioning” are expected to produce more profit, and are denied access to supports that would support their wellbeing, while those deemed “low functioning” are expected to produce little or no profit, while costing the system money.

This in turn is used to dehumanise Autistic people, with the end result being violent ableism and eugenics.”

Right now, in my current condition, I am unable to work. I can’t even stand up for very long. In my current condition, sitting at my kitchen table rocking back and forth, flapping, visibly shaking, and wanting to hide in a corner feeling worthless, I appear “low-functioning”.  Just a few days ago, I could be out in public, and no one would think I was autistic. No one would see it. To those who know about my neurology, I would be considered “high-functioning”. To appear “high-functioning” requires masking – heavy, energy draining, masking. Appearing “low-functioning” is not me regressing. This is me stretched beyond my functioning threshold and no longer having the capacity towards maintaining that mask. This is my raw autistic self in siege mode. Life has been too much for far too long with no reprieve.

I have written about functioning labels and burnout before -> Autistic Energy – A Depletion of a Person, Posted on January 19, 2020

I am hurting. I need time to recover, but I don’t know how to make that happen.

Rules and the Need to Break Them

Rules are rules, this is what I have understood most of my life. Rules are ways to bring order out of chaos, ways of keeping people safe, ways to maintain routine and structure within a culture, ways to make sure things get done in a timely manner and ways to maintain societal norms.

Rules are important, at least that is how I was taught. Rules are put there for a reason and must be followed . . . except when the rules don’t make any sense, except when the rules end up hurting other people, except when the rules exclude certain groups or only pertain to other groups that are seen as different.

Something is changing inside me, I can feel it, but I can’t yet make sense of it.

I want to break certain rules while also wanting to yell at people for breaking other rules.

This is a contradiction. How could both realities exist simultaneously?

I have written about experiencing a duality before back in 2016 when I was just beginning my journey. I was still going by the label of “The Aspie Teacher” –> The Issue of Living in a Duality of Perception

I have been doing a lot of trauma therapy over these past few years with the goal of connecting to my core self – something I have been cut off from while trying to survive in an unhealthy environment. Being 47 and only now realizing what it means to be me is an uncomfortable place to be in. This goes against the things I have been taught about growing up and where I “should” be now in my life. This also goes against my understanding of childhood development, but I need to remember that I am developmentally delayed and was not allowed to develop as a person as I needed to. I was essentially contained and expected to be someone I wasn’t. 

This containment and unattainable expectation resulted in me becoming disconnected from my core self, my core values. I was not who I was expected to be, but I didn’t understand this. I kept following the rules and did what I was told. Why was everything so hard? Why didn’t anything make sense?

I felt like robot going through the motions and things didn’t get any better. This was very confusing to me, because I kept being told that if I do such and such, things would get better, but it didn’t happen. In fact, things only got worse. As a result, I became less and less of my true self as I retreated further away into myself trying to protect what little I had left.   

Only recently have a come to the realization that I was trying to make things better using other people’s values and rules. I was born into a world that isn’t set up for someone like me with my values. The world I was born into was small and full of authority figures that never dealt with their own trauma. This led to the trauma being transferred on to me. I internalized that trauma, because I thought it was my job to do so not understanding what was happening. Unspoken expectations inevitably lead to conflict and that is exactly what happened.

I split as a person. I shattered under the stress. Complex-PTSD is not something I would wish on anyone. I have written about Complex-PTSD many times over the years –> Moving from Surviving to Healing

I wish I knew what it means to naturally be myself. I cannot tell what my autism is, what is the trauma, and what is considered “typical”.  Unfortunately, due to how our society is, we can’t differentiate autistic behavior from trauma because our current society doesn’t produce any un-traumatized autistic people.

I have been having a lot of stress dreams lately dealing with my children, step-child, and other adults in my life. In these dreams, the ground is hot, cracked, and glowing red from the fiery magma underneath. I am trying to get the children to safety, but I keep running into problems with others who don’t believe there is a problem. What is the big deal? Everything fine. We don’t have to do anything.

In the dream, I keep trying to reason with the others and I can’t break through to them. I keep thinking in the dream that rules need to be broken, because no one is seeing the need that I am seeing. In my dream, the world is fracturing, and I need to move the children to safety, to a better place, but I can’t get anyone else to understand this. The world in my dream wants status quo, it wants things to continue as is and the cracks to be ignored while people go about their day.

I don’t want status quo. I want change. I want people to hear me. There is something in me that is no longer willing to hide away and just submit to the unspoken expectations. My values and the world in which I live in are not matching up. This is not the world that I want to live in. I need to break out of this mold. Rules are no longer rules. I want to break the rules. I need to break the rules.

BURN IT DOWN [Official Music Video] – Linkin Park

Answering From the Heart

I need to stop trying to answer the question of what I want to do with my life with an answer that I think I am supposed to say and just answer from the heart.

I want to giggle and run and dance in the sunlight.

I want to be a kid

I want to be free.

• I don’t want to have to think about everyone else’s needs.
• I don’t want to have to worry about what I am “supposed” to be doing or feeling as opposed to what I am really doing or feeling.
• I don’t want to worry about getting yelled at or shamed or questioned for just being or feeling or experiencing.
• I don’t want the demands and expectations that drain me of life energy.
• I don’t want the exhaustion and the confusion.
• I don’t want to have to be serious and cautious all the time.

I want to spin with my arms out wide and my head back looking up at the sky, just spinning!

Then I want to jump, just jump. Up and down and all around.

I want to feel the world around me with my fingertips.

Touching, Learning, Calming, Connecting.

I want to explore the woods away from the busyness and the walls.

I want to rush down a hill on my bike without being scolded.

I want to jump and splash in puddles.

I want to get messy and not worry that I will get in trouble or be an embarrassment.

I want to pause in a space and feel music, my music, the music that slows the world down, the music that I can float in, the music that takes my mind elsewhere blocking everything else out.

I want to know what it is like to just be me in my own skin connected to myself.  

Self-Loathing – The Battle of the Mind

Content Warning: Profanity and discussion of self-hatred.

In Star Wars Episode 3: Revenge of the Sith, a severely burned and injured Anakin rages and screams at Obi Wan that he hates him, blaming Obi Wan for everything that has happened to him.

“I HATE YOU!”

This scene feels like what my own mind keeps telling me. “You did this. You let this happen. I hate you!”

I have run from these thoughts for years, telling myself that it can’t be true, it can’t be true! I don’t want to hate myself. I don’t want to hate in general. Yet, the hate is there.

I am afraid to feel these thoughts. I have always tried to be a positive and optimistic person, but it felt more like I was acting rather than actually feeling it. I remember trying to talk about my more negative feelings growing up and into my 20s, but I was always shutdown, told that I was being ridiculous or that I have so much to be happy for or that I should just get over it and move on. My feelings were not validated, and I was not taught how to process these negative feeling appropriately. I gave up trying to talk about these things with those closest to me. I was expected to essentially “fake it until you make it”. That is not realistic. I hate myself for freezing up over the years which I am written about before –> I Am Not Okay

I have been taught that hatred is a horrible thing, a dark and hideous thing, something to be shunned and avoided. Hatred is defined as “extreme dislike or disgust”. Self-hatred is defined as personal self-loathing or hatred of oneself, or low self-esteem which may lead to self-harm. My self-harm is years and years of trying to prove myself, pushing myself way past my stress threshold on an ongoing basis, constantly trying to not make mistakes in fear of death (emotional/spiritual death, not physical) all resulting in existing in perpetual burnout of one form or another. I chose to use the word “existing” rather than “living” because this isn’t living. This is self-destruction. Wanting to die has been part of this, but I am still here, still fighting, still trying to heal.

I have started the process of learning how to process and manage my anger in a healthy way, something that I was never taught how to do growing up. Instead of expressing my anger and allowing myself to feel it, I suppressed it, buried it deep and ran from it. That anger sat there for years festering and growing in strength.

Unbeknownst to me, I have been feeding off that energy to keep me going all these years, pushing and pushing and pushing myself forward to some unknown future where things would be better. At least, that was what I told myself, the idea that if I worked hard enough, a better world would become available where I would be accepted and things would get easier. This is an unobtainable situation, one that I held on to for a very long time.

Anakin was horribly burned and disfigured during his battle with Obi Wan due to refusing to walk away from an unwinnable situation. Using my anger as a fuel source has left me in a state of perpetual emotional, physical, and mental exhaustion. In the other words, I am burned from the inside out. Now I am here trying to heal from the damage that my mind is telling me I caused.

Self-hatred doesn’t just happen overnight. This self-loathing develops overtime and typically is triggered by more than one factor, including past trauma, perfectionism, false expectations, social comparisons, and several learned behaviors. In my case, all of the above.

I grew up an undiagnosed autistic person who is highly impacted by my disability. I didn’t get the help I needed, and I held myself up to the high expectations that were placed on me. These were not realistic expectations, yet I kept doing this to myself, holding myself to high standards well into adulthood. I was also raised to be a codependent and compared to my peers and my sibling. My home life and school life were not emotionally safe places for me, and I experienced numerous medical traumas. My adaptive skills developed while being in survival mode all through my childhood and into my adulthood. I became really good at surviving.

I started dissociating at a young age and continued to do so well into adulthood. I experienced my life not by living it, but rather by witnessing from above or to the side. I wasn’t really there, just watching it from a distant place unable to do anything, stuck frozen and hidden. I put everyone else’s needs ahead of my own, because that is what I thought I had to do in order to not be a disappointment. I have always felt that I needed permission to do anything, because I was controlled through fear as a child. I am so angry about that and still so scared to face those memories.

Reconnecting to my body through trauma therapy has felt like an awaking of sorts, but it has also been very painful. These emotional parts of myself that were cut off didn’t develop along with the rest of me. They are at the age I was when I froze in those moments. These are new intense sensations, and I don’t know to handle them yet. This anger that has been awoken is overwhelming. The anger is directed at me, not to those who hurt me. Physical symptoms are happening as well, with nausea and extreme tiredness being prominent. This feeling of impending doom also exists. Plus the physical sensations of tightness in my throat as well as heaviness, numbness and tingling in my arms. I know this is my anxiety disorder being a royal pain in the frigging a**! I also know all these are somatic symptoms related to my stress, but that fact is not getting my body to relax.

I am trying very hard to sit with the anxiety and trying to calm my brain, but it is fighting me. Under all this anxiety is the anger and my brain doesn’t want to go there, because the anger is covering up other emotions.

I don’t want to go there. The fear is so strong due to the shame that I carry wanting to dump all that underlying crap on me blaming me for it. That shame comes from childhood trauma. In order to heal, I need to express and feel that anger, but not in the way Anakin did. He embraced his anger, allowed that rage to control him, and it cost him everything. I need to do this carefully, little by little. I need to direct the anger in the proper direction, away from me. I don’t know how long I will need to do this until it doesn’t feel so heavy and scary and suffocating, but I need to keep doing it until I do. To all those who hurt me:

YOU taught me hate myself!

F*ck you! F*ck all of you!!

You all hurt a child who only wanted connection and to feel safe.

You god-damn pieces of shit! I hate you!

I HATE YOU!!!!

YOU took my safety away!! YOU broke my trust! YOU left me alone and confused! YOU left me like this – broken, betrayed, full of self-loathing and spending the rest of my life trying to prove that I am worthy. It is not fair. I hate you and I don’t know how to handle hating people I care about.

I Am Not Okay

Content Warning: Profanity and discussion of trauma.

That feeling of lack of purpose is back again. I feel empty, drained. I want to runaway and hide. I don’t want to do “it” anymore, but what is “it”? I feel exhausted just trying to think about it, to just sit with it. I feel depleted.

A hell landscape, a burned charred tree, a blacken sky with orange sunlight being seen low in the horizon. And a female figure in black robes standing near the tree with dark purple and black rays emanating from her towards the sky. This is a part of myself where my rage, my resentment, and my anger are kept, sealed away from the rest of me. I am terrified of this part of me. She scares me. I don’t want to be anywhere near her. She is my loss of control. She is my nitro fuel that burns me out fast with every endeavor that I embark on.  So different from the little girl part of me who would run and dance under the green trees and a bright blue sky with her cat – There Once Was a Girl.

Trees hold great symbolism for me. Trees bring me comfort. This is why I was surprised during my trauma counseling session this week that this imagery of this hell landscape appeared. The female figure is an adult version of me and during this session this angry adult had facial expressions that matched my mother. In my blog, “There Once Was a Girl”, there is passage that applies to this facial expression:

“Her father would tease and make fun of how she spoke. Her mother would ignore her or dismiss the girl unless she wanted something from the girl.  Yelling happened a lot.  Her father would yell at everyone in the house and her mother would chastise her for not being how her mother wanted her to be. The girl could not understand why this happened.”

The adult figure in the hell landscape was yelling at me that it was all my fault, everything that happened to me was all my fault. She kept asking why I froze instead of fighting back. She kept saying I hurt myself, I hurt all of me. I made it happen because I didn’t fight back. So much anger, so much hatred. I realized then that what was happening was my brain telling me that I hate myself.

I never wanted to become my parents. I was so scared of being a disappointment, so frightened of losing control. I decided at a young age that I wouldn’t drink, because my understanding was that alcohol reduces inhibitions and I did not want that anger to be unleashed. The anger just sat there and grew over the years hidden away behind this stoic mask with a flat affect. No one knew. I have been screaming in my head for so damn long and no one heard, no one could tell. I contained it all, but at a very heavy cost to myself. I am 47 years old, and only now after years of trauma work, I have been able to get close enough to see it in my mind. This imagery will help me learn how to sit with it, but it needs to be done carefully and slowly. Trauma work is not a fast process, and it is definitely not an easy process.

Over the years, my typical trauma responses have been freeze and fawn. I became good at these responses, hiding in plain sight and learning how to be a codependent at a young age. These survival adaptations worked in the moment but are not useful when trying to live your life.  

Image from The Smart Girl’s Guide to Self-Care

My anger got squashed and hidden away. I didn’t let myself feel it as I needed to. I was surrounded by people who didn’t have healthy coping skills in terms of managing anger. I was never taught how to properly manage it, so I buried it. Unfortunately, this only allowed it to grow and manifest into this being of immense power that is burning me up inside and demanding to be heard. She wants to be released, but I don’t know how to do that in a safe and healthy way, so I write.

I let my hands type out what ever comes to my mind without thinking about it but staying present while I allow my brain to let my thoughts flow through my fingertips. Trauma work is weird. You end up feeling very uncomfortable during the process. You also feel like you are being foolish, and you find yourself asking yourself, “what the heck are you doing?” and “why has my brain created these images?” and “what does this all mean?”. My brain is seeking some sort of pattern, some linear fashion that would make it all make sense, but trauma work doesn’t operate in a linear fashion. Trauma work goes where it needs to go in its own time and in some very unexpected ways.  

My analytical side is asking these questions. I feel safer being in this part of myself. Sitting with the emotions is the hard part. My internal defenses keep trying to keep me away from getting close to those parts that are buried. It has taken years to even get where I am today in terms of recovery.

I know that I need to let myself feel the anger. As with any trauma, a person needs to sit with the emotion in a way that works for them in order to process it. I just don’t know where to start when it comes to my anger. There is so much and the angry female figure wants me to feel it all at once, because this part of myself is saying “how dare I do this to myself! How dare I let all this pain just sit here and burn!”

My brain can’t handle it though, so it wants to shut down. It wants to escape. It can’t run away, so it is trying to dissociate, which is an adaptive form of the freeze response. I feel like I am trudging through thick swampy muck that is above my knees as I write this. The air is so thick and heavy. My head feels heavy. My brain is fighting me.

**Deep Breath**

**Closes eyes and listens to instrumental music.**

I am safe. I am here in this room. I can feel my body sitting on this bed and I can feel the keys of this laptop.

**Deep Breath**

**The heaviness lessens.**

I want to scream at people – “IT IS TOO MUCH!! LEAVE ME ALONE!! F*CK OFF YOU NASTY PIECE OF SH*T!! YOU G*DDAMN A**HOLES, YOU DID THIS TO ME!!”

Screaming at people isn’t going to fix anything and it quite possibly will make things worse. Instead, I will yell and cuss here.

“YOU PIECES OF SH*T!” “YOU GAVE ME YOUR HURT TO CARRY INSTEAD OF PROCESSING YOUR OWN TRAUMA!” “I DON’T WANT IT!!” “I DON’T DESERVE THIS!” “THIS IS NOT MINE TO BEAR!” “TAKE IT BACK!! TAKE IT ALL BACK!!”

**Deep Breath**

AAAAAAAAAAAAAAAAAAAHHHHHHHHHHHHHHHHHHH!!

I am so tired. So very tired. I don’t want to hate myself.  I am not okay and I need to say it out loud.

Citizen Soldier – I’m Not Okay (Official Lyric Video)

Oh, To Be Free!

I feel I was not only denied my childhood, but also denied being present for the early years of my own children. I was trapped in survival mode, stuck in a perpetual state of fight/flight/freeze/fawn. The four Fs of torment that never stopped and no one seemed to notice how stuck I really was. My doctor knew my cortisol levels crashed way too early each day, but had no answer as to why. My heart regularly felt like it was trying to beat out of my chest, but this was so “normal” to me that it was pushed off to the side. I often would wake up drenched in sweat after having repetitive nightmares no understanding what the images meant and why my body was reacting the way it was.

I would learn much later in life that those nightmares were flashbacks, and my body was physically reacting to the memories it contained of all the trauma I have experienced in my life. I have Complex-PTSD stemming from childhood trauma and trauma experienced well into adulthood.

Yet, the ones who were there at the time of the trauma, the ones who were responsible for the trauma that I experienced, don’t see it as neglect or abuse or trauma. They don’t think they did anything wrong. They claim I am the problem, that I am the one that just won’t “let go” and “move on”, that I am the one who needs to just accept people for who they are.

What about me?

These same people don’t know who I am as a person. Not really. They only know of the how I presented myself while in survival mode. They saw this presentation and assumed that this guarded, stoic, stiff, quiet person was me. This is not who I am. My competence was also questioned many times. I am more capable than people realize, but for some reason, I am seen as someone that must be protected and contained.

Growing up and well into adulthood, all I wanted to do is run. I wanted to feel like I was flying! I wanted to spread my wings and escape everything, to be free and be able to breath, to feel comfortable in my own skin. I love to run. I have been an active runner for 28 ½ years. I have written about running before –> Why I Run.

I have often said the reason I run is to help me feel grounded, to reduce my stress, to help me self-regulate, but I started asking myself if there was another reason for why I push myself to run like I do. It is one thing to run, because you like it, and it helps you to stay in shape. It is another matter when you run to escape something.  I started asking myself this, because running isn’t working like it used to. I am not feeling calmer. I push harder and run farther, yet I remain feeling panicky and stressed. My brain feels jumbled. I feel like I am having a harder time holding on to the present. I feel pulled in different directions.   

I need to let go, but not in the way the others were telling me all these years. I need to let go of the idea of wanting to have the connection I craved as a child. There is still a part of me, a much younger part, seeking that connection.  It doesn’t want to let go. It is desperate and so lonely and scared.  It keeps saying “just keep trying”, “just give them more time, they will come around”, “just be more patient”. This is what trauma can do to a person, it traps you in hope from the past. It is a cruel game and there is no winner.

There is another part of me, a part that just wants to settle and give up. This part keeps saying “there is nothing that can be done”, “this is how it is”. This part feels older, maybe high school age. This part feels so disconnected, so discouraged. I began disassociating at a young age prior to this part of myself forming. Trauma can also do this to a person, when a person can not escape physically, they escape emotionally and mentally. Stoicism has been a survival mechanism for me for a long time.

A third part, my current self, is frustrated. I don’t want to live like this. Fighting with the pieces of myself. My much younger self doesn’t want to give up. It pushes me to keep going in whatever endeavor I am pursuing. My teenage self doesn’t want to disappear into nothingness. This part shuts off my emotional side. These parts drive me. It feels like a compulsion. I have to keep going or I will drown. I have to do well. I have to be better. I have to prove myself. I can’t disappoint.

I have a fear of disappointing people. This is attached to my trauma as a young child. I was so young and didn’t understand what happened. I was blamed for something that wasn’t my fault. The yelling and screaming – I still feel it today. I was told I was bad, that I was a disappointment, that it was my fault, but no explanation was given, no care to see if I was alright. I was just left alone in confusion and fear, separated from everyone.  I was just left . . .

I felt so unseen growing up, invisible to others. Part of that was me trying to not be noticed. Being noticed would result in being yelled out or dumped on or hugged without consent. The other part was how those around me assumed I was rejecting them, so I was ignored. I wasn’t rejecting them. I needed connection that met my needs. My needs have always been different from theirs and they didn’t understand this. I grew up as an undiagnosed autistic. Thirty-six years would go by before I had an answer as to why I am how I am. Thirty-six years of confusion and spending much of that time in some sort of dissociative state trying to protect myself. Stuck trying to run from all that emotional pain, but I couldn’t escape it. More information about this can be found here –> Breathe.

Unprocessed trauma follows a person, and it finds a way to let a person know that it is still there. Unprocessed trauma can erupt out at the most inopportune moment when you least expect it.

I need to let myself grieve. This is not something that is easy for me to do. I wasn’t allowed to grieve as I needed to growing up, nor was I helped with my grief, so all that grief got stuck. A human vessel can’t contain grief indefinitely. Grief ended up fracturing me into different pieces and those pieces ended up controlling my decision making depending on which got triggered.  So much fear and sadness in my younger self, so much emptiness and determination in the teenage self, so much frustration and exhaustion in my older self. All these parts are vying for control trying to protect the person I am.  

As a developmentally delayed person, I didn’t reach my teenage angst years until my 30s. My guess is that I am on average about 10-15 years developmentally behind my peers and even farther behind emotionally in certain areas of my life. I still feel like I am a teenager with 47 years of experience on this planet, a very tried and sad teenager. I have two Master degrees yet feel so naïve and unexperienced in areas of life that are typically experienced at a much younger age.

For me to continue healing, I need to connect with my core self. I have yet to do that. Trauma work can take years. I have worked through years and years of layers of trauma that were distancing me from my core self. I was cutoff from who I am as a person due to living in survival mode for so long. I have written about this before –> What does it mean to be me?

I know that I will never get the years back that were taken from me. I need to grief that lost time. I need to find a way to give back what was emotionally dumped on me. My core self is there. I can feel it. A fledgling beacon of light waiting for me to find my way back home.

Psychotherapist Rachel Eddins, M.Ed., LPC-S, describes the core-self as “your true self, or most authentic self.” It is our “inner wisdom, inner nurturer, wise self, feeling self, inner voice…”. Your core self is not your thoughts, but rather what notices your thoughts. Your core self is described as your essence and intuition that we tend to basically silence or stifle as a way to protect it. We tend to use distraction, avoidance and surface communication (pretending to be happy) as well as dissociation to protect that core self. We do this, because our core self is a vulnerability.

I want to let my vulnerability out. I want it to spread its wings and fly. Oh, to be free!

I can make this happen by allowing myself to grieve. My grief weighs me down. I carry too much. I feel that the fractured parts of myself are ready for me to do this, to finally let go, but I can’t force it. I have complicated grief. Not due to the actual death of a loved one, but rather the loss of a life that never was. A life that had started, but was snuffed out by societal expectations, domestic abuse, and generational trauma.  

I am the result of a square peg being pounded down to fit in a round hole. I never fit that round hole and was heavily damaged from years of pounding. It is a difficult journey coming to the realization that you were born into a mix match situation. I desperately wanted connection with people who couldn’t provide the connection that I needed. I couldn’t be how they wanted me to be either. It was a mix match.

I married into other mix match, like what I grew up in. I knew how to survive in that mix match. Unfortunately, that mix match continued to harm me in ways that I am still figuring out. I thought my role was to find a way to fit in that mix match, that it was my job to comply, because I had the internalize belief that the problem was me. It never was, though. I am not the problem. The problem was the mix match. The majority felt they were in the right, because they all felt the same about the things happening around us. I was different.

I didn’t fit the mold. I didn’t fit the core beliefs that the majority had. My core beliefs were different. I hid the person I am to survive. This only hurt me as a person. My core-self never changed no matter how much pounding I endured.

The person I am, my core-self, is still waking up from being locked away. I feel like I am experiencing life for the first time. Sensations feel different, more real. I feel more connected to my body now than I have ever been. This is a sign that my mind is healing.

The people in my life may never understand why I embarked on this journey and that is okay. They are not meant to understand. This is my journey. This is me learning to fly!

Autism and Statistics – It is Autism Acceptance/Awareness Month . . . Again!

With Autism Acceptance/Awareness Month upon us, I wanted to send out some statistics, hurdles, and disparities.

Statistics:

According to Inclusionary Practices Project (IPP) LRE/Placement Data, Washington State, where I live, ranks 44th out of 50 states in inclusionary practice in educational settings.

The Access Ranking indicates how much access to mental health care exists within a state. The access measures include access to insurance, access to treatment, quality and cost of insurance, access to special education, and workforce availability. A high Access Ranking indicates that a state provides relatively more access to insurance and mental health treatment.

The 9 measures that make up the Access Ranking include:

1. Adults with AMI who Did Not Receive Treatment
2. Adults with AMI Reporting Unmet Need
3. Adults with AMI who are Uninsured
4. Adults with Disability who Could Not See a Doctor Due to Costs
5. Youth with MDE who Did Not Receive Mental Health Services
6. Youth with Severe MDE who Received Some Consistent Treatment
7. Children with Private Insurance that Did Not Cover Mental or Emotional Problems
8. Students Identified with Emotional Disturbance for an Individualized Education Program
9. Mental Health Workforce Availability

Washington is overall ranked 31 out of 50 states and Washington D.C for providing access to mental health services. The overall ranking includes both adult and youth measures as well as prevalence and access to care measures.

Washington State has a 40.5 percent disability employment rate, which puts it 20th in the nation in terms of jobs for people with disabilities with autistic people having the lowest employment rate (58%) when compared to peers with intellectual disability (74%), emotional disturbance, speech impairment, or learning disability (over 90%).

This means 42% of young adults on the autism spectrum never worked for pay during their early 20s. Data shows that it can take up to 6-8 years for the employment rate of these young adults to match that of their peers with emotional disturbance, learning disability, or speech language impairment.

Pre-COVID data (2019) shows a whopping 85% of autistic college graduates are unemployed, compared to the national unemployment rate of 4.5%.

Hurdles:

• Getting past the interview has been reported as a major barrier for many autistic people.
• Knowing how to self-advocate.
• Understanding rights under the ADA.
• Knowing how to get accommodations and services as well as needed guidance.
• Social isolation and loneliness.

Quotes from Why is the Autistic Unemployment Rate so High?:

“Not only do Autistic workers and Autistic would-be workers face the struggle for acceptance and the struggle for accommodation, but Autistic people experience a higher-than-average rate of other issues that affect employability such as gender and sexual identity issues and other, co-occurring disabilities.”

“The vast majority of Autistics in the workforce fall through this “crack” between too-low expectations and too-high demands and either get turned away from employment or offered underemployment positions that do not pay enough money to support us.”

Young autistic adults have a difficult time following high school for almost any outcome you choose – working, continuing school, living independently, socializing and participating in the community, and staying healthy and safe. To complicate matters, many of these youth begin their journey into adulthood by stepping off a services cliff with access to needed supports and services dropping off dramatically after high school with too many being left with no help at all.

More Quotes from Why is the Autistic Unemployment Rate so High?:

“Autistic people are seven times more likely to be Transgender than the general population. Since the Transgender unemployment rate is three times the unemployment rate among the general population, the intersection of autism and gender identity issues is bound to be another aspect that explains the high rate of unemployment among Autistic people.”

“As for other disabilities, nearly half of all Autistic people meet the criteria for anxiety disorders, between 10% and 33% of Autistic people qualified for the workforce have epilepsy, around 30% of Autistics also have obsessive-compulsive disorder, Autistic people experience at least double the amount of sleep disorders as the general population, and so on. There are other conditions that are not yet strongly documented in scientific literature but which the Autistic community has noticed appearing at a much increased rate among us, for example Ehlers-Danlos syndrome.” 

Using a Danish population-based sample of more than 6.5 million persons with observations over the course of 10 years, both suicide attempts and deaths were found to be more than 3 times higher among individuals with autism, with significantly higher rates compared with the general population across all age ranges, beginning from age 10 years.

Womenkind Worldwide explains that intersectionality is the acknowledgement that everyone has their own unique experiences of discrimination and oppression, and that we must consider everything and anything that can marginalize people, including gender, race, class, sexual orientation, physical ability, disability, etc. The term “intersectionality” was coined by Professor Kimberlé Crenshaw in 1989 and was added to the Oxford Dictionary in 2015 with its importance increasingly being recognized in the world of women’s rights.  Autism statistics don’t tell the whole story. How intersectionality plays into the statistics need to be kept in mind when focusing on building support services and resources.

United States Population Overview

• 1 in 54 children are estimated to have Autism Spectrum Disorder (ASD) in the U.S. (CDC, 2019)
• 1 in 45 adults are estimated to have ASD in the U.S. (5.4 million people) (Fox, 2020)
• Boys are diagnosed with ASD 4:1 compared to girls (APA, 2013, p. 57)
• White children are diagnosed with ASD more than Black or Hispanic children (CDC, 2019)
• ASD diagnosis is positively correlated with socioeconomic status (CDC, 2019)

Within these statistics are gender and minority disparities. Girls are historically underdiagnosed and children of color and those from diverse ethnic groups are more likely to be diagnosed later and to receive inaccurate diagnoses (such as conduct disorder) compared to white children (Mandell et al., 2009). The issues that contribute to these disparities include, access to ASD assessment and screenings, clinician bias (Cheslack-Postava & Jordan-Young, 2012; Mandell et al., 2009), and diagnostic tool bias (Harrison et al., 2017). Another issue that adds to these disparities is that there have been very few peer-reviewed studies on evidence-based practices for ASD that adequately report on race and ethnicity. Of those studies that do, the majority of participants are white (West at al., 2018).

 Then there is the issue of masking. I have written about masking before –> Autistic Energy – A Depletion of a Person . Masking is also referred to as “camouflaging” or hiding who we are as autistic individuals. This is something many of us learn from an early age even before we are diagnosed. Often it is used as a survival mechanism, a way to blend in, and a way to make friends or maintain employment. Masking is very exhausting and can actually cause harm.

I want to pull together all these statistics plus all the hurdles plus all the disparities and connect that to the feeling of what Mask Wolf sings about in his song “Astronaut in the Ocean”. 

Lyrics [Chorus]:

What you know about rollin’ down in the deep?

When your brain goes numb, you can call that mental freeze

When these people talk too much, put that shit in slow motion, yeah

I feel like an astronaut in the ocean

Mask Wolf explained that he was dealing with a severe case of depression when he put this song together and that the title of this song is an analogy. Astronauts train for being in space by performing similar tasks underwater in deep pools. Through the metaphorical use of language, Mask Wolf described his depression as “deep” like what one would envision at the depths of the ocean. He also describes why he “feel(s) like an astronaut in the ocean”, with the astronaut being himself and the ocean being symbolic of the overall, encompassing anguish he is experiencing.

As a late diagnosed female autistic person with co-existing conditions who has a long history of underemployment and lack of income even though I am highly educated, I struggle with the ongoing feeling of being lost, falling in this void with no handholds to grab onto to help ground me to the present time. I have Complex-PTSD from years and years of experiencing trauma in one form or another.

April is known as Autism Acceptance/Awareness Month. I ask that we, as a society, do a little less awareness and a little more acceptance when it comes to the issues that so many autistic people face every day of their lives. Through acceptance, we, as a society, can work towards real action in improving the lives of autistic people rather than just being aware that we exist. And, yes, there are a lot of us out there in many forms. Please stop seeing us as a burden or unemployable or unwelcomed due to our mental health condition, gender, sexuality, or color of our skin.

Thank you.