Autism

A Preamble

There has been something that I’ve been wanting to share publicly for quite a while but it just wasn’t the right timing, for a number of different reasons.

In short, I have been diagnosed as being autistic and it has changed my life for the better. Consequently, I will be spending more time sharing my thoughts about autism and my experiences as being an “Aspie” on this blog from here on out.

Although, technically-speaking, many of you who have been readers for quite some time have already read through those thoughts but now you can think upon those previous entries with a more discerning eye and perspective.

There is so much to say about the past year, my diagnosis, and all of the significant revelations that I would love to apprise you all of and I shall endeavor to uncover and share those things wisely and without rushing it as best as I can. I’m sure many of you have questions and that’s great as I shall try my very best to answer as many of them as I can.

For some of you this preamble will be just enough and you can go on your merry way and think nothing more of it. If you are more interested in reading the more robust version of this announcement of sorts then feel free to continue reading.

Thanks, in advance, for listening to my story and please feel free to share it with others!

Catching You Up

This is a post I’ve been meaning to publish for a long, long time. It’s also been one of the most difficult posts that I’ve ever had to write. I’ve been avoiding it like the proverbial plague and have been, at times, completely unsure of what to write and how to say what I’ve wanted to say.

And since I’m not entirely of how best to say it I’m just going to say it plainly (and perhaps a bit “clinical” at first) and then see if I can add some context around it later:

I am autistic.

More specifically, I have Asperger’s which is an autism spectrum disorder. There are many things that can describe a person with Asperger’s Syndrome but in general they find social interaction (social cues) quite challenging, the ability to understand verbal and nonverbal communication difficult, and have restrictive and repetitive patterns of behaviors, interests, and obsessions. Odd use of language is often reported as well (raises hand).

I was officially diagnosed as an adult earlier this year on March 14, 2013 and I can easily remember that because 3/14 (or 3.14) is the mathematical constant π (Pi). Go figure.

This diagnosis has been a long time coming as I’ve been living with it my entire life undiagnosed and it is, without a doubt, one of the most important events of my life. It has finally answered many of the prevailing questions that I have had about myself and how I relate to others and have filled in innumerable knowledge gaps for my spouse and close relations as well as provided a clear picture of why things happened the way that they did and how I can live life with more success in every way.

After three decades of frustration, anxiety, guilt, and shame I have been given a new lens to see myself and the world and the last year has been one of discovery, relief, and a freshness that is difficult to describe. It’s also been difficult, emotional, and heartbreaking but that has less to do with my diagnosis; instead it’s a reminder that you and I live in a fallen and broken world.

It has also been one of my best kept secrets… until now.

My official neuropsychological test report.
My official neuropsychological test report.

At the same time as my autism diagnosis I underwent a comprehensive neuropsychological exam that helped provide some context and understanding into three comorbid disorders, the first being ADHD, the second being OCD, and the third an acute form of anxiety disorder which has directly contributed to my history of clinical depression (I’ve shared that on the blog a few times before).

It sounds like I’m a mess and in many ways it’s true, I am a mess, yet I have learned to not only embrace these god-given truths and behavioral qualities but also leverage them successfully for my own unique flavors of life, relationships, and work. In the end, I have most simply learned to love myself as God made me and choose joyful acceptance instead of bitterness and defeat.

At this point you may have a lot of thoughts and certainly a lot of questions and in time I hope to answer as many of them as I can for you (and for myself) as best as I can. It has been a significant journey of discovery and will continue to be one for the rest of my life.

We Are All Unique

For starters, though, I think it’s important to remember this one fact:

If you’ve met one autistic person… then you’ve met one autistic person.

Every single autistic person and who lives and breathes on the autistic spectrum is very different and is as unique as the next person, whether they are autistic or not (those without autism are often described as “neurotypicals”).

The word “spectrum” is very important because it explicitly states how the disorder is understood both from a behavioral aspect and a scientific one. Most simply it means that there are some people with autism who are completely dysfunctional from a physiological perspective (e.g. not being able to bathe themselves or clothe or eat for themselves) and who require constant supervision and support. These people are “low” on the autistic spectrum (but are no less human than anyone else).

Then there are autistics who have what we call Asperger’s and who are “high” on the spectrum. We can generally “fit in” to the general population and know how to generally function in “normal” society. You may even know a few “Aspies” (as many like to call themselves) and not even know it although you may be aware of these individual’s strange and somewhat peculiar behavior.

Many Aspies can hold full-time and part-time jobs and have meaningful and long-term relationships (although many of us struggle to do so) and there are many who have found entrepreneurship an attractive path to follow because of our behavioral dynamics and our challenges with acceptable social behavior. I know I have.

The point of sharing this is to not only educate those that may not necessarily know much about autism spectrum disorder but also to lovingly suggest that much of what you think you know about ASD may be wrong or built upon faulty information. Mass media and syndicated television shows are not entirely helpful either as they present only one person with autism and do not comprehensively represent the entire autistic population (and how could they…?).

So now that we’re square…

Why Go Public?

I’ve been in conversation with many people and I’ve been asked many times why I should even go “public” with something like this, something that, for many people, feels very private in nature and not worth the time nor effort to share especially with the potential for gross misunderstanding, heartache, and even such normal emotions like resentment, anger, and bitterness.

In addition it’s been made very clear to me that the outcause of going public with something like this could be very damaging; many aspies have shared with me how they lost significant relationships because they shared it public, some even saw their marriages disintegrate and many more lost their jobs. They told me in very plain english that it was the “worst” decision they have ever made.

And yet, on the flipside of the coin, I’ve been presented with some incredible stories of how it’s changed lives for the good and for the better. How healing and forgiveness and understanding was made available to many within the circle of relationships around the autistic person. How going public was, in contrast, the “best” decision they have ever made. They have been more successful relationally and even more successful vocationally as a result of going public.

In the end I came to the conclusion that one size definitely does not fit all and that it is, at the end of the day, a personal decision that can only be made by myself and those that have known me best and love me unconditionally. My story will be just as unique as who I am and who God made me to be and I will weather the storm that may or may not come as a result.

But it wasn’t just a flippant Oh well, let’s see what happens! type of deal as my choice was very deliberate and well-counseled. After speaking with my “inner” circle of family and friends as well as having counsel from a host of medical professionals and therapists, I made my decision with a clear mind and heart as I had come to believe that there was a greater potential for good than bad as a result of my going public.

In other words, I believed that I have the unique opportunity to not only create a greater awareness about autism spectrum disorder but also counsel, mentor, and encourage other autistic people to embrace their uniqueness and find success with it. Not only that I believe I can counsel and encourage their families as well as communities and organizations about how to better relate, hire, and even create a more healthy ecosystem and environment for autistic people. I’ll admit that I’m not entirely sure how I will do this but I trust that I’ll figure that part out in time (and if you’d like to connect me with individuals and/or organizations, I’d love that!).

But there are also some other things that are worth sharing that have helped me come to the place where I am now and have helped me become incredibly comfortable with my decision to go public.

The Right Time

There is really never a perfect time for something like this as there exists no scenario where all the “I’s” could have their dot and every “T” could be successfully crossed. As such, I knew that in time I would garner enough strength and check off as many boxes as I could to feel safe and ready for such an announcement.

The first box that needed to be checked off was with my wife and close family. I needed to first make sure that they were comfortable with it being public and that they knew that I had considered their perspective first before anyone else. Although I did not necessarily need their permission to do so I wanted them to know that I thought of them first and that my priority was to share the news privately with those closest to me and then expand outward from there. It took time to coordinate schedules and even travel to some of them as I wanted to discuss the diagnosis and idea of going public in person. Eventually I was able to have frank, honest, and open conversations with all of them on my list and it was key to moving forward.

My wife, specifically, has been 100% supportive. I wouldn’t be doing this without her. She has read and helped craft the “draft” of this blog post 1,000 times over through our various, intimate, and intense conversations since my official diagnosis. And, of course, she has lived an autist for the past 8+ years of marriage. Through it all she has heard my mind and my heart and every thing in between as I have struggled to wrap my head around some of the conclusions and how best to present the information and move strongly forward in a public way.

She also intimately carries the burden of this public news and she knows the potential pitfalls and costs associated with it. She is my rock, my coach, my counselor, and my friend. I’m glad to have her standing by my side, together.

The grace that she has shown me throughout our years of marriage is other-wordly. Yes, she has been incredibly frustrated with me and my behaviors that I can’t seem to “fix” over the years but now, with the diagnosis, we know concretely why. The stories I could tell you about our marriage relationship and the challenges within are hilarious, tragic and redemptive all at the same time and I imagine I’ll share those with you in the future. But she has given me grace and love that is undeserved and unparalleled. I thank God for her.

In addition, there have been some other professional movements that have helped this announcement make a lot of sense now than previously. For instance, I had exited my previous company that had 3 partners and staff and consequently there would be little business interference with an announcement of this potential magnitude. In other words, any negative outcause of me sharing this news now would have no effect on a business that had the burden of supporting partners, staff, and their families. Although I do not believe that going public while leading that organization would have created significant adverse effects for the business at large my waiting until that was fully closed down mitigated all risk on the table.

I am thankful for their friendship through the process for they were some of the first to know and some of those conversations that I had with a few of them helped “right the ship” for me on many occasion. I look back fondly on those dialogues and hope to find others that I can trust without reservation.

And since I now am not currently employed with any organization outside of my own I bear all of the risk that comes with going public. I’m fine with that and for the many people that shared with me their anxiety of getting “fired” from their job because of going public with their diagnosis I could easily look them in the eyes and say “Hey, I already fired myself and I suppose I’m technically unemployed at the moment, so now’s as good of a time as any!

Although there does exist the potential for me to lose professional relationships due to my diagnosis being public I have hoped and prayed that I have staved those off those risks by choosing to work and relate with people who have more integrity and moral character than ones that decide they can’t work with me because I have ASD (but you never know). Autism isn’t a disease and it can’t be cured, any more than someone trying to “cure” or “fix” the fact that they have red hair. It is what it is and I’m so thankful to be on the higher end of the spectrum and able to do work that is meaningful and that creates value for others.

I have also spent just the right amount of time discussing autism within the autistic community itself. I have engaged with hundreds of Aspies over the last year incognito and discussed my hopes, my dreams, my fears, and anything else that I have been thinking. There are some powerful online communities that have been an incredible encouragement to me and some of them require that you use a “fake” name when you engage so as to protect the innocent. I have enjoyed those “public” and private conversations and I certainly do not feel alone.

Going public was one such topic that I brought up and the line was evenly drawn right down the middle with those that encouraged me to do so citing it as a great decision and those that counseled me to forget the idea entirely as it “ruined” their life. Those conversations helped me weed through the many varying perspectives and helped me form my own opinion of the matter given my unique circumstances and environment. Obviously I have decided to move forward with going public but I do keep close to my heart the challenges that were cited in doing so and the potential results that may still come to pass. Regardless, I shall weather them and thankfully not alone.

I also shared with this community a huge body of writing that was partly a suggestion by my therapist and partly my own doing. Since one of my obsessions is blogging it only made sense for me to begin writing my thoughts candidly about my diagnosis and how it has impacted my life. I gave myself a “100 Day Challenge” and began writing for one hundred straight days on a public blog. I shared my writing securely with the autistic community who never knew who the “real” person was behind the writing and I received some incredible feedback.

All-in-all I finished my journey and penned over 95,000 words and am toying with the idea of creating some sort of memoir. I’m not sure who or what organization would publish something like that but I’m all ears if you have any suggestions. It’s very “raw” in nature and in content and most certainly not for the feint of heart, but it is real and it is the most transparent writing I’ve ever composed.

There are also a few more signals that have helped me move to this place and they are as follows:

  • The Removal of Techno-Social Noise – Over the past few years I have systematically abandoned some of the larger social networking and social media tools which has enabled me to fully engage with the difficult process of therapy and counseling, both in the digital space and away from the keyboard. I am now getting close to one full month without Twitter and it has been one of the best decisions I’ve ever made. The noise pollution from those tools can be so deafening for me especially that I would be unable to cope with the results of going public in that forum, at least for the time being. This blog will serve as the definitive source for the announcement and all the rest is just gossip, conjecture, and techno-annoyances.
  • My Personal Health – A large part of this discovery process has been about my personal health which has gotten worse every year. It had gotten so bad that late last year my body literally began to shut down and it was the sign and impetus that began this process into what we now have as a diagnosis. There is too much to share on this note right now but my health, both physical, mental, and spiritual is ready for a public announcement. My physical health especially is one of the very few things that I can explicitly control and it impacts directly my behavior as an autistic person in many ways. I have had some incredible success in this arena and I’m so proud of myself and my family for supporting this decision because it was definitely a family-sized effort.
  • Personal Research – I have spent as much time as I have needed to do the personal research into autism and ASD and have read scientific journals, articles, books, and memoirs from many autistic peoples. I have enjoyed my time reading immensely and appreciate all the varying degrees of autism in it’s many forms and have enjoyed both the narratives as well as the scientific baselines. I know as much as I am comfortable with to go public and answer most questions as they arise and especially am aware of the immense # of resources that are available to autistic peoples.
  • Experimentation – I have had a good deal of fun experimenting with select groups of people and individuals by sharing my diagnosis and gauging people’s reactions. Not all of them have been “warm” and not all have them have been entirely cold. For sure I’ve had some very disturbing and upsetting moments where I received a response that I was not expecting but that’s what happens in experiments and in times of experimentation. I have performed all of the experiments that I’ve wanted in both controlled public and controlled private ways and feel good about my empirical data set. It’ll grow over time, but I feel good enough with what I’ve got with some of the hypotheses that I had performed.
  • Solitude – I’ve had a good run of thinking it over and now is as good of a time as any. I am neither emotional about the decision nor apathetic. I am instead burdened to share and be transparent and forthcoming as I have always been with many of you. I believe that all secrets will be eventually revealed in time and that all of us have less to hide than we might imagine. Sure, there are some things that are best kept secret and between you and your Maker but most things find a healthy resolution when they see the light of day. My time alone with my so-called “secret” and time in isolation and solitude has been good and long enough.
  • Trusted Confidantes – And I cannot forget to thank those that I have entrusted this information earlier in my process of discovery. You have kept your promise of secrecy and it meant a lot to me over the many months. You helped me “test” my delivery and gave me security when I felt like I had none. Thank you, thank you, thank you. You have provided me courage to push the “Publish” button on this blog post. Such friends are hard to come by.

As I mentioned before, there is no “right” time for something like this and well, my friends, now is as good a time as any.

What Does This Mean Moving Forward?

It means a few things but I do not desire anyone to think more of it than the time it takes to read this large blog post. I am who I am and will continue to be who I am as long as I live on this green planet. My hope is that any judgment that may arise out of this announcement can be tempered and that you can seek to understand not just who I am but autism in a much larger and better way.

It means that “John” is still very much “John” except now you may have a deeper understanding of what makes me tick (talking in the 3rd person is so odd).

It also means that much of your interaction with me can be now seen more clearly through the lens and perspective of autism. It means that grace and understanding can now enter into the picture, I hope, in a way that’s more functional and sound than it may have been in the past. It means that for those that have the pleasure (or displeasure) of interacting with me on a more personal and professional manner may have a deeper understanding as to why I acted in such a way or why I said what I said that may have been odd or “different” or even off-color.

In fact, my blog post here about “Being Yourself” was written about a month after my official diagnosis and I was foreshadowing to my readers a more “authentic” representation of myself, one that I imagined would offend more often than not. For example, one common attribute for those with autism is a “bad” mouth (potty mouth perhaps?) and I have the mouth of a sailor (if you know me personally this is of no surprise). I have learned and trained myself, with some difficulty, to refrain from 4-letter words when in public but it is quite difficult and if you get me comfortable I may state my mind plainly. And if I’m excited about something (e.g. passionate) then you’re bound to hear something that you might not often hear.

Since a blog allows you to self-edit to your heart’s content you can always present a more even-keeled and more “clean” representation of yourself to your general audience and I have done that my entire blogging career. The post quoting Emerson was vitally important to me because I made a decision to see what it would be like to be more “me” in the blogging context, warts and all. I received many emails, some veiled in the form of a “humble rebuke” and many more that outright condemned me for such thoughtless use of words like “fuck” and “shit” and “damn.”

Ironically, I was being the most thoughtful I had ever been when writing and hitting the “Publish” button on some of those were fraught with anxiety for what I believed would happen. But at least I could find some humor in it because I still edit out much of what I truly think because some of it’s truly over-the-top offensive (if you only knew…). I have my boundaries just as you have your boundaries and yet many people forget to keep those boundaries to themselves when they go out in public (or comment on a blog post).

I am autistic and will be this way as far as science can tell. With that comes behavioral characteristics and traits that are not normal or neurotypical. I have learned to like and even love the quirks for they are mine to keep, cherish, and exercise. They are also the source of much of my inspiration and success within the technological sphere. My OCD tendencies and hyper-focus / obsession with things allows me to “break through” challenging barriers for the projects that I work on and allows me a level of satisfaction that I often see lacking in many other people. If you can excuse a coarse sentence (or two) because I’m overly excited about the last line of code that I wrote then you and I can get along just fine. If not… well, I apologize for that. Luckily the world is large and big enough for you to find more “normal” human beings to interact with and befriend. There is no shame in that and there is no shame in my game.

This also means that I will be blogging more about autism; not always so explicitly but you can be assured that it will be part of my overall perspective, voice and possibly my so-called “brand” (whatever that is). Autism doesn’t define me any more than the fact that I am Korean-American, that I wear corrective glasses for my eyesight, and that I bite my nails and (sometimes) pick my nose when I’m nervous. This is who I am and I have always blogged about my life and the work that I do as naturally as I know how and I promise to answer as much of the questions as best as I can with the limited amount of time (and attention) that I have. At the very least I will do my very best to try.

Finally, I ask that you share this blog post with others. My motive? I’ve already shared that above. I believe that going public will allow me to encourage others, especially autistic people, to love themselves more and appreciate the uniqueness that we have to offer the world. In fact, we have more than just uniqueness – we have intrinsic value and we can create incredible amounts of value if we choose to do so. Tragically, we often deceive ourselves into believing that we cannot and we do more harm to ourselves than to do good for others (and consequently ourselves as well).

I want to change all that, if I can, and use whatever platform that I have as a vehicle for that encouraging message. If you could please share this blog post and connect me with people and organizations who are doing good work in these fields I would be very grateful. Of course, I also invite you to ask any and all the questions you may have. This is a new chapter in my life and I might as well go big with it. Why the hell not?

Thanks for listening and if you’ve made it all the way to the end… congrats as this one was a doozy. More to come, for sure, as this journey has just begun.

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