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.”
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:
- Ronnie Pinder who wrote Autistic Fatigue
- Emily Swain who wrote Autistic Burnout: An Often-Misunderstood Element of Autism
- Kieran – The Autistic Advocate who wrote An Autistic Burnout
- Ryan Boren who wrote Autistic Burnout: The Cost of Masking and Passing
- Dora M Raymaker, PhD with Portland State University / Academic Autism Spectrum Partnership in Research and Education (AASPIRE) who put together a whole slide presentation called AUTISTIC BURNOUT: “MY PHYSICAL BODY AND MIND STARTED SHUTTING DOWN”
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.