My Journey with Autism
I saw the movie about Temple Grandin as a child. I met children diagnosed with autism as a child. And while I related a lot, I assumed that it didn’t apply to me. I seemed normal enough, didn’t I? But then, why couldn’t I make friends? And why were my grades so poor even though everyone always was calling me precocious, prodigious, talented, and unusually mature? Why didn’t I start reading until I was thirteen despite having two well-read parents and a high incentive (and desire) to read?
All of these questions are answered by neurodivergence. In particular, I seemed relatively normal because both my parents are neurodivergent as well. I seemed like the natural byproduct of my parents, and I was (and am).
But my journey with autism really starts with all the other things I learned about psychology, neurology, and behavior, long before I looked at autism.
At the age of fourteen, I had the revelation that people’s personalities are formed more by their traumas than by their successes or talents. I had this realization because of my first love and his sharing his traumatic memories with me (which he had never shared with anyone else before).
Context: Since I couldn’t make friends, I learned to throw myself at boys/men sexually as a way to find connection. I had two six-month long relationships under my belt when I got into a relationship with my first love at thirteen and stayed with him for two years, nine months of which we lived together. By the time I was nineteen I had three relationships that had lasted two years apiece, and yet I still had never had a meaningful or lasting friendship.
At the age of eighteen, I realized that people are often defined by their struggles and limitations with health. In my case, stomach ulcers in my teens completely redirected my life. I had to give up on western medicine because it had failed me entirely and left me in crippling pain with no explanation for well over a year. (I was misdiagnosed with anxiety.) I became an avid researcher even though previously I had hated research. I learned to cook, even though previously I’d hated cooking. I began to look at people through the lens of health, and observed that people only changed when the pain of changing was less than the pain of staying the same. For me, it was much less painful to change.
At the age of twenty-five, I had a grand insight into subconscious workings, and how even the smallest memories (which we no longer consciously recall) create our strange, idiosyncratic habits. This came to me through my first experiences with hypnosis. I immersed myself in groups of people dedicated to understanding the subconscious and creating integration. I learned parts work, voice dialogue, and other techniques and wrote my own process called Perspective Alchemy. Then I learned (and became certified in) The Completion Process and updated my book on Perspective Alchemy to reflect my latest learnings.
At twenty-nine, I learned about the genetic trait of being a Highly Sensitive Person (HSP), and I began studying Myers-Briggs and the functional stack originally outlined by Carl Jung. I learned, startlingly, that certain MBTI types (INFJs and INFPs) are always HSPs, which means there is a genetic tendency toward certain personalities. I now hypothesize that all INTJs have a certain type of autism/neurodivergence, as my mother is an INTJ, one of her best friends who is obviously autistic is an INTJ, and my new boyfriend is also an INTJ. (My autistic husband is an INFP and my neurotypical husband is an ENTP.)
At thirty, I learned of the ACE study through reading Childhood Disrupted and put another piece of the puzzle into place. Innocuous things, like being repeatedly shamed by one’s parents, later leads to an eight-fold increase in incidence of autoimmune disease. Here was a scientific study proving the connection between trauma and physical disease – even when controlling for lifestyle factors such as diet, smoking, and exercise.
At thirty, I finally realized that I have autism, and so my parents, one of my husbands, my nephew, and several of my closest friends. This eventually led to a research rampage and settling on the term “neurodivergent” because I eventually came to understand that there isn’t a clear way to tell whether someone is a highly sensitive person or an autistic person from symptoms alone (you would need to verify it through whether or not you have the HSP gene). Also, little is actually known by modern science about what combinations of genes, trauma, and environment create which neurological changes and why. Terms such as “autism” are vague, but made to sound specific. Hence, I prefer “neurodivergent” which is an intentionally broad term that invokes curiosity rather than assumption.
Now my understanding looks like this: The following factors work together to create who we are as individuals.
1. Genetics (being an HSP, for example)
2. Biological adaptations in response to trauma or cultural conditioning (such as having an overactive amygdala)
3. Environmental factors that shape our health (such as being in a culture that smokes a lot of pot and thereby suffering digestive issues, lung issues, and receding gums)
So that’s my story with autism.
Other interesting things about me:
I was raised in an inner city where being white made me a minority and I was actually discriminated against for being white my entire childhood. My first three loves were black, and I was deeply immersed in “black culture” for most of the first twenty years of my life. I mistook many of my autistic symptoms for “being white” because my parents and I were my prime examples of being white, but also my prime examples for introversion and neurodivergence, but I didn’t know that at the time.
I was a strict raw foodist for multiple years of my life and it saved my health. However, I am no longer a raw foodist as there were advantages to including particular cooked foods in my diet. I used to give nutrition lectures and mostly blog about health. My primary claim to fame in the health world is healing my teeth, which I’ve authored a master class on which I’m in the process of turning into a series of videos.
I discovered polyamory with my husband (Lytenian, the neurodivergent INFP) in 2012. We decided we were polyamorous and always had been and just hadn’t known it. In 2015 I met my neurotypical ENTP husband, Greg. The three of us live together. I’m not worried about being public on this forum with this information since I already discuss it on my youtube channel, my facebook, my instagram, and my website. There is actually a full story of how we became polyamorous on my website. And most recently, in January 2021, I started dating my neurodivergent INTJ friend who prefers not to be named publicly online.
I’ve been reading these forums for a while to answer some questions for the book I’m writing about neurodivergence, but I finally decided to register because I have some questions (which I put in a different thread in the appropriate location).
Thank you for reading and being here and contributing to this forum! ♥
_________________
— Raederle Phoenix
The Consciousness Alchemist
www.Raederle.com
Raederle is pronounced: Ray-der-lee
Welcome to Wrong Planet!
Here's a minor correction to something you wrote:
[...]
At thirty, I finally realized that I have autism, and so my parents, one of my husbands, my nephew, and several of my closest friends. This eventually led to a research rampage and settling on the term “neurodivergent” because I eventually came to understand that there isn’t a clear way to tell whether someone is a highly sensitive person or an autistic person from symptoms alone (you would need to verify it through whether or not you have the HSP gene).
There isn't just one "HSP gene." There are multiple sets of genes that may play a role. See:
- Do These Genes Help Make You a Highly Sensitive Person? - Psychology Today
- These 3 Sets of Genes Make You a Highly Sensitive Person - Highly Sensitive Refuge
_________________
- Autistic in NYC - Resources and new ideas for the autistic adult community in the New York City metro area.
- Autistic peer-led groups (via text-based chat, currently) led or facilitated by members of the Autistic Peer Leadership Group.
- My Twitter / "X" (new as of 2021)
Hello. Welcome. Quite a journey you have been on.
I was trying to get through to people on this site that whites can be discriminated against by blacks but it is hard for people to comprehend that as they are pre-programmed with the word "Discrimination" as meaning black people.
One can also get (And I have experienced this a lot in the past) whites discriminating against whites who are not one of their elitist groups etc, etc. The list goes on and it can have a significent impact on ones life and future prospects.
I think that everyones experiences are different. I did not come to grasp that I "Might" be on the spectrum until a few years ago, even though on mny occasions I have had random people ask or tell me if I was autistic or have aspergers syndrome etc, to which I ignored. I thought they were joking, and at one time when someone said it to me, I rushed outside the building expecting someone to be there hiding while chuckling away that had put them up to it, as I had been convinced someone had been pranking me by sending random people to prank me. (It is the type of thing I once did to my first girlfriend who I loved dearly but it did not work out as one day when we were going to get married all dating stopped and so did all contact with no logical explination. Turns out she was narcistic and had a list of broken hearted men behind her and I later found out that she had been dating two others during the time I had been dating her... But the prank I played was when her Dad bought her a nearly new Skoda and she did not want a Skoda, so I had many random people I worked with text her phone with various Skoda jokes that were going around at the time).
Like you, I found it difficult to get friends. I would marvel at the popular people in the class in how they could mask so well to have so many friends. (I did not know that masking had a name, but I knew I dis it and I assumed that everyone did it, and those who had lots of friends did it the best? I did not know that not many people masked as part of their daily lives).
I do have friends but two things are rare. One is that it is rare for me to find a friend that is my age. The second thing is that it is even rarer to find a friend who lives near me. The third thing is that it is difficult for me to keep friends in the rare event of finding one. Most people I class as "People I know" who I am friendly with, but I don't connect to in a way that we can... Hard to say what I mean. It is like there is something missing where other people get accepted by these people as friends, but while they are not unfriendly, I would find that if I called in with them, I would have to limit how mny times every couple of years I would visit them as if I would visit them a few times a year it would be too much. But they would only visit me because they wanted something. That sort of friendship where no one means anyone any harm, but I could not really be part of their lives unless I had a skill they needed.
The only people that I can say that I am friendly to and can connect with are the "Missfits". (And I would not change this as I value them soo much!) Very few people have I even connected to like this and those who I have... Most of them I am sure are people who are on rhe spectrum themselves and do not know it.
I am about 95% sure I am on the spectrum, as it explains so many things to me if I am, and if I am not, then there will be a lot of questions as I will be back to the point where I was before when I was in a mess and I prayed to God "God, what is wrong with me?"
Actually that was before I had a lot of people come and tell me or ask me if I was autistic and I still did not take the hint! Maybe I am? If I am not I will be a BAP, as I have too many traits to be an allistic person.
Sorry. I am talking too much about self which my mother would tell me off for! Like I get told off for talking about trains "Again", and told I should let other people speak about their hobbies ans I accidently said "But Mum. I don't know much about horses" while I stood in front of one of my neighbours who loves and keeps horses and happens to be a brain surgeon... So yes, I do put my foot in it... Or rather both feet and jump straight in!
Sorry. I am writing too much now. Welcome to Wrong Planet!
AnonymousAnonymous
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Age: 34
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- Do These Genes Help Make You a Highly Sensitive Person? - Psychology Today
- These 3 Sets of Genes Make You a Highly Sensitive Person - Highly Sensitive Refuge
Thank you for mentioning this. At the time that I learned about being an HSP, I only knew about it as one gene because most the sources then were indicating one gene. I've read some about there being multiple genes since then but actually forgot about it as I've been focusing much more on autism research.
Do you happen to know of anyone who explores the possibility of HSP and autism overlap? I spent several days in December trying to find anything on that anywhere, and I didn't find anything, which surprised me.
_________________
— Raederle Phoenix
The Consciousness Alchemist
www.Raederle.com
Raederle is pronounced: Ray-der-lee
Your story brought to mind that of another individual by the name of Barry Marshall. By his actions I suspect he was probably an INTJ. He received a Nobel Peace Prize in 2005 along with his long time collaborator [John] Robin Warren for his boldness.
For years an obscure doctor hailing from Australia’s hardscrabble west coast watched in horror as ulcer patients fell so ill that many had their stomach removed or bled until they died. That physician, an internist named Barry Marshall, was tormented because he knew there was a simple treatment for ulcers, which at that time afflicted 10 percent of all adults.
In 1981 Marshall began working with Robin Warren, the Royal Perth Hospital pathologist who, two years earlier, discovered the gut could be overrun by hardy, corkscrew-shaped bacteria called Helicobacter pylori. Biopsying ulcer patients and culturing the organisms in the lab, Marshall traced not just ulcers but also stomach cancer to this gut infection. The cure, he realized, was readily available: antibiotics. But mainstream gastroenterologists were dismissive, holding on to the old idea that ulcers were caused by stress [along with eating spicy food and smoking cigarettes].
Unable to make his case in studies with lab mice (because H. pylori affects only primates) and prohibited from experimenting on people, Marshall grew desperate. Finally he ran an experiment on the only human patient he could ethically recruit: himself. He took some H. pylori from the gut of an ailing patient, stirred it into a broth, and drank it.
As the days passed, he developed gastritis, the precursor to an ulcer: He started vomiting, his breath began to stink, and he felt sick and exhausted. Back in the lab, he biopsied his own gut, culturing H. pylori and proving unequivocally that bacteria were the underlying cause of ulcers.
Source: The Doctor Who Drank Infectious Broth, Gave Himself an Ulcer, and Solved a Medical Mystery
So today we know that certain types of stomach ulcers are caused by a bacteria called Helicobacter pylori that can be cured by taking certain antibiotics. In 2015, it was estimated that over 50% of the world's population had H. pylori in their upper gastrointestinal tracts with this infection (or colonization) being more common in developing countries. The infection can be detected using a simple test administered in you doctors office. But the infection is also fairly antibiotic resistant and it often takes several tries using different antibiotic cocktails to cure it.
_________________
Author of Practical Preparations for a Coronavirus Pandemic.
A very unique plan. As Dr. Paul Thompson wrote, "This is the very best paper on the virus I have ever seen."
I have noticed that the person who can be afford to be the most vulnerable in a room has control of the room. This ties into a theme in one of my most insightful articles, 'Just Be Yourself' and Why That Doesn't Work for Introverts. You'd probably like it. http://www.raederle.com/2013/11/introvert-versus-extrovert-be-yourself.html
Oh boy can I relate to that! The best female friend I ever had is more than forty years my senior and she's now moved to Australia to be with her grandchildren! Still, I have learned to befriend some women my age locally, but it is challenging and sometimes unnerving how much I don't relate to norms that are important to them.
Yes, that too. Growing up one could say that I had friends as much as half the time . . . But these friends only lasted days, weeks, or months. In a couple cases they seemed to last for years, but in one ugly case a girl who was supposedly my friend actually ditched me in favor of remaining friends with my boyfriend when he broke up with me. Along with every other so-called friend I had at the time. When he dumped me, my whole social life dumped me.
I can't imagine that people would be suggesting that to you if you aren't. Nobody has ever suggested it to me, and it was only considered a little with my husband. Usually you have to fight to get people to believe your diagnosis if you're even a shade different than the classic image of autism (Rainman). If people organically already observe it in you, they're undoubtedly right.
That's what we autistics do. I'm familiar with it and don't take offense to it, lol. I just ask that people try to be interesting if they're going to go on about themselves.
Thank you for sharing.
— Raederle
_________________
— Raederle Phoenix
The Consciousness Alchemist
www.Raederle.com
Raederle is pronounced: Ray-der-lee
In 1981 Marshall began working with Robin Warren, the Royal Perth Hospital pathologist who, two years earlier, discovered the gut could be overrun by hardy, corkscrew-shaped bacteria called Helicobacter pylori. Biopsying ulcer patients and culturing the organisms in the lab, Marshall traced not just ulcers but also stomach cancer to this gut infection. The cure, he realized, was readily available: antibiotics. But mainstream gastroenterologists were dismissive, holding on to the old idea that ulcers were caused by stress [along with eating spicy food and smoking cigarettes].
I was on antibiotics multiple times a year for the first sixteen years of my life due to western medicine. Unfortunately, antibiotics were are large part of where my problems began. My mother was on antibiotics for ten years straight as that was the only way they knew how to treat her case back in the middle of the 1900s (she had me at 42). As you undoubtedly know, your own healthy, diverse flora bank is supplied by your mother, unless you're born by C-section (like my husband Lytenian), or unless your mother's flora is a hopeless pile of yeast overgrowth – whatever could survive all the antibiotics.
Dr. Natasha Campbell-McBride, MD writes about the strong link between unhealthy microbiome balance and its connection with physical and psychological issues, including developmental delays. I have no doubt that poor flora balance has been an issue my entire life. I could define "constipation" when I was only three.
I've done many flora-regenerative diets and many courses of herbal antibiotics ever since I got off western medicine and slowly rehabilitated my gut. I can now eat potatoes again and other starchy foods which I couldn't tolerate for a decade of my life.
I have no doubt that H pylori is part of my story as it matches up with how and when my stomach ulcers formed and how and when they were healed and what worked best. That said, H pylori being present all by itself isn't enough to cause stomach ulcers. It's actually about the absence of a balance of flora keeping the H pylori in check. Just like my garden outside: if I dig up all the weeds and then only plant a few plants for every square yard of my garden, I'm liable to have some seeds blow in and have a wild overgrowth of whatever happens to be going to seed at the time. If it's May, they'll be dandelions everywhere. If it's July, I'll be dealing with toxic wild parsnip. Diversity is what keeps gardens healthy, it's what keeps the macrobiome of our planet healthy, and it's what keeps the microbiome of our guts healthy.
In an acute case of sudden stomach ulcers brought on by food poisoning or some such, sure, a course of antibiotics might be the right direction. But it should only be the start. Major rehabilitation to the gut including the introduction of hundreds of different flora should be the next step. This is where western medicine continues to fail us. Let's hope that changes soon.
Thank you for sharing.
— Raederle
_________________
— Raederle Phoenix
The Consciousness Alchemist
www.Raederle.com
Raederle is pronounced: Ray-der-lee
They obviously do overlap, because many (most?) autistic people have sensory sensitivities. You might find the following Spectrum News article interesting: Sensory sensitivity may share genetic roots with autism by Nicholette Zeliadt, 17 January 2018.
See also the DSM 5 diagnostic criteria for ASD, category B-4: "Hyper- or hyporeactivity to sensory input or unusual interest in sensory aspects of the environment."
_________________
- Autistic in NYC - Resources and new ideas for the autistic adult community in the New York City metro area.
- Autistic peer-led groups (via text-based chat, currently) led or facilitated by members of the Autistic Peer Leadership Group.
- My Twitter / "X" (new as of 2021)
This is an excellent article! One of the best explanations I've seen as to what's wrong with masking (or, at least, the kind of heavy-duty masking a lot of autistic people do to try to blend in with NT's).
This is why, in order to be productive, we absolutely need autistic-friendly environments in which we don't have to mask.
You might be interested in the following, by me: Autistic-friendly social skills vs. blending in with NT's.
_________________
- Autistic in NYC - Resources and new ideas for the autistic adult community in the New York City metro area.
- Autistic peer-led groups (via text-based chat, currently) led or facilitated by members of the Autistic Peer Leadership Group.
- My Twitter / "X" (new as of 2021)
I have noticed that the person who can be afford to be the most vulnerable in a room has control of the room. This ties into a theme in one of my most insightful articles, 'Just Be Yourself' and Why That Doesn't Work for Introverts. You'd probably like it. http://www.raederle.com/2013/11/introvert-versus-extrovert-be-yourself.html
Oh boy can I relate to that! The best female friend I ever had is more than forty years my senior and she's now moved to Australia to be with her grandchildren! Still, I have learned to befriend some women my age locally, but it is challenging and sometimes unnerving how much I don't relate to norms that are important to them.
Yes, that too. Growing up one could say that I had friends as much as half the time . . . But these friends only lasted days, weeks, or months. In a couple cases they seemed to last for years, but in one ugly case a girl who was supposedly my friend actually ditched me in favor of remaining friends with my boyfriend when he broke up with me. Along with every other so-called friend I had at the time. When he dumped me, my whole social life dumped me.
I can't imagine that people would be suggesting that to you if you aren't. Nobody has ever suggested it to me, and it was only considered a little with my husband. Usually you have to fight to get people to believe your diagnosis if you're even a shade different than the classic image of autism (Rainman). If people organically already observe it in you, they're undoubtedly right.
That's what we autistics do. I'm familiar with it and don't take offense to it, lol. I just ask that people try to be interesting if they're going to go on about themselves.
Thank you for sharing.
— Raederle
It took me a lot to get me thinking that I may be on the spectrum, but also, now I can see many traits I have I am almost scared if I am not on the spectrum because I feel I have understood myself and the thought of not understanding myself again is awful.
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