Autism Awareness Day – April 2nd

Did you know today is National Autism Awareness Day? Neither did I, until I finally came to the realization that I am autistic. It used to be referred to as Asperger’s Syndrome (DSM-IV, 1994) but is now reclassified, according to the DSM-V, 2013, as a high functioning form of autism.

Previous to now, I had always seen autism as a disorder that profoundly affected an individual. Most often it was individuals who had regressive autism. This classification, “regressive autism” is usually associated with an infant with normal development after birth, i.e., walking, talking and developmentally “normal” according to a pediatrician’s bell curve of neurological development. Suddenly the child looses the ability to speak and/or walk. The child stares off into space, no longer making eye contact or cognizant there is a world beyond themselves. Neurologically they have shutdown, turned off and develop personality changes that are “out of character” for the child the family once knew. These are the children who change following some environmental, neurological assault, often a vaccination, sometimes an illness.

I was considered “normal” growing up in the 1950’s and 60’s. We naturally had all the usual, childhood diseases. Measles, I had at least two kinds, “red” and the “German” varieties, chickenpox, mumps, and enjoyed having time to recuperate at home. My brother or sister usually would have come down with it too, and sometimes friends would come over so they could get it too and get it over with. We’d play board games, we didn’t have video games back then or we’d watch the Brady Bunch.

In 2014, when I was in my late 50’s, I had a Sudden Cardiac Arrest which, obviously, I survived. I called 911 just in time, I was in the ambulance on the way to the hospital when my SCA occurred. I am one of the lucky ones to survive. A Sudden Cardiac Arrest is an electrical misfiring in the heart that causes the heart to go into an erratic beat, typically tachycardia, until the heart stops. The brain begins to lose oxygen and within minutes the patient is clinically brain dead and ultimately dies. There is a difference between a heart attack and a sudden cardiac arrest, one’s the plumbing and one’s the electrical system, learn more here.

I bring this up because it was an integrative cardiologist, Joel Kahn, MD, in the Detroit area that truly saved my life. I had read his book, “The Whole Heart Solution”, and learned a lot. In those pages I learned about deficiency in B6 and something I have never heard, MTHFR. I had a history of low B6 during pregnancy and I wondered what this other thing was. When I saw Dr. Kahn, he ran a lot of blood tests and I later learned I had inherited MTHFR from both of my parents. I was what is known as homozygous for the MTHFR 1298 variant. My homocysteine levels were high and this was a red flag for possible MTHFR genetic issues.

My research on Pyruvate Kinase Deficiency (PKD) has shown that MTHFR 1298 interferes with BH4 and creates major issues with the various “feel good” chemicals in the body, like serotonin, dopamine, etc. The implications of BH4 deficiencies have also been linked to autism and cardiovascular disease.

It was my research that lead me to conclude that autism is something you are born with due to a genetic variant in your chromosomal makeup. The magnitude of how much autism affects an individual can be made much more severe with an environmental toxin or neurological overload. The deficiency in BH4 creates the perfect storm for the “regressive” form of autism, since the adjuvants and/or preservatives in the vaccines are heavy metals, such as aluminum, mercury, etc. that are extremely difficult for someone with a methylation or MTHFR issue to clear through their liver and detox like a “normal” person would. Even certain medications that interfere with the methylation cycles can exacerbate a mild form of autism to a much more problematic and symptomatic form.

My very mild Asperger’s developed into obvious autistic behaviors after my sudden cardiac arrest. I had lived off of an organic fruit basket my friends had sent me for the six days I was in the hospital. I had verbally declined all vaccines the nurses tried to offer, the flu and pneumonia vaccine. However following my discharge my paperwork indicated that I had received a vaccination while hospitalized for the pneumonia vaccine, despite my specifically declining and explicitly stating I did NOT want any vaccines. Once home I was observed rocking myself whilst sitting on the couch. To my daughter’s disgust, I watched, “Deadliest Catch” streaming on television, one episode after another, watching an entire season in a day. She doesn’t even like to eat fish, let alone watch this show. I’m sorry. I needed to watch it.

Only upon reflection do I realize how many symptoms of Asperger’s I displayed growing up. No one noticed, no one cared. My sister, who was an RN, even complained of my difficult personality traits of not making small talk and being to “detailed” on a particular subject, failed to see the autism connection. Instead she shunned me. She was toxic anyway.

The end of my freshman year in high school my parents divorced and we moved from New Jersey down to the Atlanta area, where I had been born. I grew up moving on an average of once a year due to my dad’s job. He was a programmer for IBM, long before anyone knew what a computer was. No one noticed I was that different in school. They didn’t know me because I was “the new kid” and I was an oddity for that reason alone. By the time anyone would have picked up that I was different, I was gone…moving onto the next town.

Anyways, I digress. When we moved south and stayed with my aunt, I learned some southern slang that I hadn’t heard before. My aunt would say, “you eat like a bird”. So I looked up how much birds really do eat. I asked her, “did you know birds consume ten times their weight every time they eat?” She laughed, but she never chided me about my eating habits again. She said weird things like, “I’m fixing to go… or I’ll carry you to school if you miss the bus”. These expressions were foreign to me and I asked her if she actually “fixed” something before she went or did that thing she talked about. I laughed when she said she’d carry me, I seriously asked her, do you think you could pick me up, aren’t I to heavy? Again she laughed. I laughed too, but I was serious. I didn’t understand. Fortunately for me, she was patient and kind and explained what these expressions really meant. This is a sign of Asperger’s, but none of us knew it.

I’ve often been teased for my intense curiosity about things. I thoroughly thirst for knowledge and find a subject that I want to learn everything about. I even bought the farm, quite literally. I learned to spin wool, which lead me to learn about sheep and later goats. I even had a podcast for awhile that I called “Ba Ba Blacksheep” where I was “Bowpeep” the host. I shared my new found knowledge about different breeds of sheep and their wool characteristics for spinners like myself. I even had a segment known as “Barnyard Banter” which explored the old expressions and how most originated from farm life, like, “don’t count your chickens before they hatch” and “all cooped up”. Ravelry, a fiberholics social media, was new at the time of my podcast so I shared tips and tricks on navigating through Ravelry. My podcast, was a classic example of an Aspie at work or what I thought of as having fun. Anyway, our farm’s name is “Bella Vita” meaning “beautiful life” in Italian.

Here’s a video that helped me see myself as someone with high functioning autism or Asperger’s. Is it possible that you or someone you know has a high functioning autism which never really was noticed before?

My hope is that those who need help will have that available once they get diagnosed. For me, learning I was in the spectrum, was a sigh of relief, that I wasn’t a social misfit, I wasn’t the only one that struggle as I have. The idea that there were others in the world like me gave me hope, gave me acceptance for who I am. I could let the mask fall, I no longer had to pretend to be “normal” when I was anything but. I embraced my differences, I am grateful for my gifts despite the bumps along the way. I just wish people would be a little kinder and love me for who I am, and not what they “expect” me to be. I’m not broken and I don’t need to be fixed. Just accepted and loved, for being me.