Have you thought of presenting you're story as the experience of someone on the spectrum?
Just as a way to educate, and give a voice to a group who often struggle, very much, to articulate how much life throws us into severe anxiety and overload?
I know that stories about other's on the spectrum (especially women, in my case, because the female presentation of Aspergers/Autism often goes under the radar and is overlooked because we present in less obvious ways than our male counterparts) has helped and validated my experience, enormously.
I, and my partner, a male, both Aspergers/Autism, have both experienced extreme bullying, violence, smear campaigns and really extreme injustice, and being on the spectrum plays a significant part in these dynamics, I believe.
So, it is my opinion that anyone on the spectrum who can shed light on the kinds of struggles we share, with our neurological issues, would be doing the entire community a service.
Just my two cents
By the way, I'm also a musical Aspie.
Oh cool. What instrument do you play?
That's a good idea about the advocacy slant. I always thought if I were ever ready to go all in on the story, I'd explain all my conditions and how they show themselves and interact in my life experience, thoughts, behaviors, and relationships. I don't want to dilute the advocacy part of my story but maybe there's a way to do that which gives rich insight into all of the conditions I have. Whether I seek publication or not, my aim is to keep the magazine piece to 5,000 words. My early drafts are a little too long and not focused enough but it's a process and I tend to overwrite and then tighten it up in the self-editing process. This time around one of my old professors is interested in being my editor, which is cool.
My HFA is a large part of the story of my life and I never knew I was autistic 'till recently. I knew I was a very honest and direct person with strong opinions—and someone who hated unwanted loud noises, certain smells, etc.—but I didn't connect these things to the spectrum. I also had some issues maintaining focus when I read books, even as a kid, but I never thought much of it, and I managed to do well in classes. I'm not sure how much knowledge there was about autism in the 80s but my teachers knew I struggled to focus on a sentence in a book and they must've told my dad. I remember one teacher showed me how to read with a bookmark covering the lines below the one I was reading so I could keep track and stay focused. I have no idea if my speech was delayed, and I'll never know. Was yours?
It wasn't 'till my early 30s that I started to get exposed to autism through some media. I would joke with my then girlfriend/now wife that I was on the spectrum, and she'd roll her eyes. When I finally did research and validated my self-diagnosis with my psychologist and my psychiatrist, and came home and tried to explain it to my wife and my brothers, they didn't take it seriously for a while. My wife wouldn't entertain a discussion about it when I presented her with a list of symptoms, and one of my brothers refused to read anything about the condition, not even a short web page. I couldn't understand and I still don't fully, but I'm starting to figure out how to accept it. It's a long battle at home especially because there's a lot of denial about many of my conditions, and we've been together for almost a decade. I was upfront about the conditions I knew I had when we met but it's gotten way more complicated since then and she fell in love with a heavily depressed person, of which I'm not as much these days. Sometimes she tells me she doesn't recognize me, and that was all before the pandemic so it's only gotten more difficult. Blood relatives are complicated, too, and I always found it hard to understand how different my brothers and I are when it comes to our views on mental health considering we have a long line of mental illness in our family tree. I'm the odd one out though. Almost everyone else was Bipolar 1 and two were schizophrenic. I have neither, and it's probably a big part of why I'm still alive, too.
My parents are both gone, and my dad never had any idea about my conditions besides my mood disorder (which was misdiagnosed until very recently) because most of them were diagnosed when I was in my 30s, and by then I had no reason to tell him because I knew it would just make him worry, and anything he could do for me by then, I was already on top of. I got my act together about my health in my mid 20s and these days I guide my doctors across specialties on all the drug interactions, etc. Just the other day I had to inform my psychiatrist that a drug he wanted me to start taking would likely cause Parkinson's based on my experience with another drug in its class, which caused a neuro disorder I now have. His reply? "Good to know." A lot of my docs should be paying me, and my healthcare costs are getting absurd, even with insurance, 'cause I have 8 specialists and many don't take insurance.
When I needed my dad most was when I was 7 to 24, and he didn't act on anything until I completely collapsed at 17, and even then, he was very hands-off moving forward. I think it was a mix of tricking himself because I was so driven and successful, and him protecting me because he probably thought by acting on my childhood symptoms and struggles, he would essentially seal the deal that I had mental issues—not to mention back then most doctors didn't even think a kid could be depressed.
All mental health issues have their own qualities and challenges, and everyone of us experiences life his or her own way, but when it comes to health disclosure, if I weren't ready to go all-in but wanted to speak certain truths, I'd focus on my autism (HFA, formerly called Asperger's), my Generalized Anxiety Disorder, and my PTSD, which is a requirement for the story since the trauma caused the PTSD. My other conditions, namely my mood disorder, carry far more stigma, in my experience. Even if my now-correct diagnosis of cylcothymic disorder and severe depression don't spell the words bipolar or manic depression, cyclothymic is a form of bipolar, and as soon as you mention the words bipolar or manic depression, people think you're dangerous. In my experience bipolar, schizophrenic, and split personality disorder carry the greatest stigma, and elicit the least understanding and the most fear. I don't have schizo or split personality, but I do have Pure O OCD and Borderline, too, and those are very highly misunderstood diseases. Few people know what Pure O is and I notice people often confuse Borderline with Split Personality, and so the other person visualizes you in a straightjacket instantly. (I for one find it appalling that people treat anyone with any of these illnesses poorly because even a severely ill paranoid schizophrenic is a human being who needs help and social services. The misconception that mentally disabled people are violent and dangerous is false but there are always going to be cases—high profile and awful ones, too—that reinforce this stereotype. Stats show time and time again that mentally disabled people are prone to harm themselves, not others, and why do they harm themselves? Well, look at our society, families, financial funding, the lack of scientific progress, the healthcare system, etc. for the answer.)
I started writing stream of consciousness about 9 months ago after this major biochemical change happened, and it just flows. My doctors are both impressed and concerned. At first my psychologist was very worried, and then he read some of my essays and was like, shit, all that talk about writing a book is actually not grandiosity.
One day I wrote myself a note on my cell, and that led to another note, and all of a sudden I'd written a lucid 2,000 word essay on healthcare in a 30min subway ride to my doctor's office. I read it back later and I had two minor edits. That's when I knew my brain was on fire, in part due to the med change and in part due to a bout of hypomania. Oddly enough, my brain hasn't slowed down yet and it's approaching a year. It's really cool and it's very difficult. I overwhelm everyone around me, and they tell me they can't follow me because I'm too many steps ahead. As true as that might be, because of my illnesses—mainly my HFA—I'm also always two steps behind because, even though I'm aware when I am going to say something that is going to rub the other person the wrong way or offend or challenge them, I usually do it anyway because I care more about being truthful than anything else. That said, unlike some autistics, I sometimes know when to shut my mouth, so I imagine my HFA is nowhere near as severe, if that's the right word to use, as other people's.
Any HFA forums you'd recommend
@mumstheword I could use a connection to that world. I don't know much about that part of me yet.
