Comorbidity is defined as the simultaneous presence of two chronic diseases or conditions in a patient, usually independent of another medical condition. Chronic is defined as continuing or occurring again and again for a long time, or always present or encountered.
At 49 years old, I’m old enough to have been autistic before the diagnoses that land me on the spectrum existed within the DSM. The first hints that my body and brain might be different than the average person were found in my sensory systems. But, in the 70’s and 80’s, we weren’t autistic, we were just odd, weird.
IN the 90’s, under DSM IV, I received the separate diagnoses of Aspergers Disorder, Sensory Integration Disorder / Sensory Processing Disorder, and Prosopagnosia. These were considered comorbid conditions. To these were added generalized anxiety and PTSD, likely from a very traumatic childhood. Now, in the world governed by DSM V, these comorbid conditions or states of being are used as evidence to place me on the autism spectrum. I didn’t have to do anything extra. My health care provider simply changed the codes, removing all the old information from DSM IV, replacing them with the new designation from DSM V. Overnight, the sum of my symptoms were calculated and I became autistic. But, was there something lost in the process? Everyone is different.
“Every autistic person is different. There’s vital information in those old diagnoses that help me in asking for and receiving accommodations and supports. The more generalized designation of autism / autistic doesn’t give a clear indication of what it means to be me.”
An example of this lack of specificity can be seen in attempting to accommodate and support my sensory life. Just because I have a new designation doesn’t mean all of my sensory issues magickly went away. Let’s explore this as we attempt to answer the question, are we the sum of our symptoms?
The Human Sensory Systems are where our “symptoms” reside
The human sensory systems are made up of sensory receptors, neural pathways, and the parts of the brain involved in sensory perception. The commonly recognized human sensory systems are those for vision, hearing, somatic sensation(touch), taste, and olfaction (smell). These systems combine within the individual to form their unique sensory life. For autistic people, sensory life is more than just scratchy seams in socks and tags in shirts. For me, my sensory systems are all mixed up – remember, sensory processing disorder / sensory integration disorder were some of my first diagnoses.
From the top to the bottom, let’s take a look.
“Let’s examine if these issues are comorbidities (a narrow view) or individual parts of a larger puzzle, the completion of which will lead to deeper insights on how best to live my life.”
My auditory processing problems mean I hear everything at the same volume. Everything. The AC fan. The humming of the lights. The rustling of papers in the next room. Conversations. The TV. Every noise. The same volume. As a kid, it was maddening. Tons of problems in school at home. As I’ve gotten older, I’ve gotten better at discriminating, but it takes a lot of energy. I have special noise cancelling earbuds that help when things get bad or when hearing specific things becomes vital. Unlike the over the head headphone options, these special earbuds were designed for the military to be covert. They’re essentially hearing protection for warfighters. My earbuds look like hearing aids. That’s fine with me. I don’t want the attention that wearing headphones in public often brings. That unwanted attention brings up the next sensory issue that I’ll address.
“I’m an empath. Many autistic people are. I generally don’t make eye contact. Why? You likely have no idea how to regulate your energy flow or direction. Other people’s emotions / energies can be rather overwhelming.”
When I have to be around a group of people, I control the impact of receiving everyone’s energy by diverting my eyes and attempting to shift my focus elsewhere. My height gives me an advantage here, as I’m 1.98m tall. People don’t expect that they’ll be able to look me in the eyes.
I’ve found it quite fascinating that businesses measure and value a leader’s emotional intelligence, and rate the leader’s emotional intelligence quotient (EQ) high simply for being sociable and engaging, when most neuro-typical people have no actual awareness of how to control their emotional energy. Autistic people tend to be highly empathic, highly self-aware, and highly motivated yet will score low on an EQ test due to the administration of poorly written surveys that tend to focus on neuro-typical social skills.
For adults, a healthy social life usually means going out for a meal with friends. My sense of taste is quite odd. I like texture over taste. I like sour / bitter vs sweet. Some tastes, like most vegetables, are just disgusting. To me, cauliflower tastes like flatulence smells. Most chefs are trained to a standard that doesn’t accommodate the fact that I like to eat the same things, prepared in the same way, so as to preserve what little energy I have to process my daily intake of calories and nutrients. Indeed, I’m a sensory avoider.
Touch, however, is a mixed bag. Skin contact is a fraught with danger. Depending on how / who, someone touching my skin can either trigger a (light touch) panic attack or (heavy touch / pressure) a fight or flight response (anger). As an empath, romantic touch is easily tantric and mind-blowing. I need to be very careful with it. Energy transference is a big issue. I can be easily overwhelmed. However, my problems in the area of pressure could be somewhat managed, making me a highly sought after football player (what else do you do with a large, angry young man?).
My sensory issues also include not being able to completely shut down and sleep. I generally just get exhausted and pass out tired. Then, around 3ish in the morning, my active quantum field generator wakes me up to do it all over again. I sleep 5 or 6 hours per night. I’m chronically fatigued, but there’s nothing I can really do about it. I don’t want to utilize drugs as they just make me groggy for days – and I can’t stand that feeling. If you can picture trying to sleep at a Metallica concert, front row, then you’ll get a sense of how all of the sensory issues I’ve just listed make sleep tough.
But, my biggest sensory problems have to do with my GI tract. I’ve spent a lifetime trying to figure out why I seemed to always feel sick and tired. I’ve spent almost a half a century feeling sick and tired of being sick and tired.
“Was what I was feeling really a series of disconnected problems, or could this be linked to all of the other things that were “going wrong?”
I’ve had endoscopies. I’ve had radiological studies. I’ve had all sorts of pills. I’ve had all sorts of nutritional advice. I’ve been fat, sick, and nearly dead. When a pill’s side effects are too much to bear, often another pill was prescribed. There were side effects upon side effects.
But, remember, I’m autistic. I’m primarily non-verbal. It has been very difficult communicating just what level of bad I was feeling about a particular pill or diagnostic test. After about a half-million dollars of work, I was done with it all. I was finally in a position in life to be able to change insurance plans from an HMO to a PPO, and thus be able to have more control over my journey to health. This is when I found the right doctor.
I found a clinical nutritionist who understood the autistic body and brain. I was examined from that standpoint. After a few sessions and a few rather non-invasive tests, I discovered that I am histamine intolerant – the root of much of my discomfort and pain. Histamine containing foods can cause inflammation in the body. In my body, it was like having a truck with a flame thrower moving it’s way down my digestive path. I was given a new diet to follow – time restricted (to manage my energy / hormone levels and thus sleep better), high-fat / low-carb (to run my body as designed), histamine free diet (to manage the pain). Within a few days, I was pain free. Within a few weeks, I was medication free. Within a few months, I had dropped some of the weight that I gained from being on a lot of medication. Now, more than a year later, I have lost all of the extra weight that I gained through my journey with western medicine and weigh about what I weighed at my high school graduation. I feel great – which is the most important. (Please note that my story is unique to me and is not presented as medical advice.)
The sum of my symptoms
I share my story with you in order to begin a conversation about all of the symptoms / comorbidities / problems / disorders that make us our unique autistic selves.
“The resources that exist for autistic people tend to focus on the “what,” the symptoms, the comorbidities, then prescribe various therapies. Very little focus on the why or attempt to explain that what the typical world sees as a disorder we see as a different order – a different way of being that is just as authentic and proper as any other way of living life as a human.”
So many in the autistic support industries teach masking strategies. Precious few are available to mentor us, to teach about the way in which we can best work with our minds and bodies as designed.
You can search the web and find all sorts of list of diagnostic criteria for autism. The criteria center around how we deviate from some pre-defined norm. As regards our connection to the world, our “symptoms” include distance / connection, inability to empathize, in an imaginary world, not responsive to human interaction, uncontrollable emotions / outbursts, extreme independence, no interest in playing pretend. In the previous section, I explained why these actions are not only appropriate, but necessary for our survival. The world isn’t designed for us.
What modern medicine classifies as delay in developing language skills, issues with interpersonal communication, more interest in non-verbal communication, problems with figurative expressions, and repetitive speech has more to do with the fact that we process language differently and use it differently than neuro-typicals do. As an example, what the world sees as repetitive speech autistics see as stimming, an attempt at self-regulation and self-care. Yes, I’m writing this article in English. But to me, English is my L2 – my second language. It’s a foreign language. It always will be. It just took me a little bit longer to learn it.
The diagnostic focus on hypersensitivity, obsessing over routines and activities, absence of usual behaviors, adverse to touching, cuddling, holding, and cyclical behaviors is rooted in the tragedy narrative and has more to say about the observer than the observed.
Looking at my “symptoms” independent of each other, as comorbidities, has not helped me at all. It has unnecessarily prolonged my path to understanding who I am and how I’m supposed to operate this body that I’ve been given.
“I’ve been told by doctors to be gluten-free, vegetarian, vegan, and all sorts of other “healthy” options. They all didn’t work. Why? First, there is no cure for the way that I am naturally – autistic.”
Second, because most doctors have less than 10 hours of nutritional education and are reading from some pamphlet that was sponsored by a group with a financial interest in keeping us in the doctor’s office.
As an example, histamine intolerance is actually quite common in people who are from families with less than 5 generations living in western societies, eating western foods. It’s also common in people with Rh negative blood types. Having a high level of sensitivity, like sensory processing issues, is also a contributing factor. Thus, it’s no wonder I’m having problems. All three describe me.
As a kid, being non-verbal meant that I couldn’t really communicate these things. I didn’t have words for what I was feeling and thus didn’t have a way to communicate what level of bad I was feeling on a particular day. Now, as an independent adult, I am able control certain aspects of my environment. It’s not that things have gotten much better. I’ve just learned to cope. I’ve learned the how of happiness. I’ve learned what things and situations to avoid. I’ve learned where my balance is. As an adult, I’m in a better place to take care of my needs.
Are you the sum of your symptoms? Perhaps. But looking at the symptoms, the comorbidities, as independent things and not part of a larger system will likely hinder progress towards your desired outcome – a happy, healthy, and balanced life. With most things in nature, there is a connection. You just have to find it. Once found, you have to act upon it.
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