Tag Archives: aspergers

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The Other Side of “We”

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We…

Imagine a large field. Populate it with images of people. Close your eyes and think for a minute about “We.”

Here’s a happy little field with a stream running through it to help you out:

When you envision “We” who joins you in your field? If I say to you “religion”, does the population change? What if I say “politics”? How about “nation”?

We are…

In your mind’s eye, what are the people wearing? What color is their hair, eyes, and skin? What are they thinking? What do they believe? What are their traditions? What makes them part of your “We”?

Here’s a peaceful waterfall to admire while you contemplate:

We are bound together by…

Now, in your mind you should have a picture of your “We”. You know what makes your group special. You know what ties you together. You know what makes you a “tribe”. If you wanted you could actually see the bonds between each individual, see each link that connects people to each other, and to you.

Perhaps one of the links says “family”. Maybe it says “community”. If you try you can break the links down even further into individual concepts. The link called “religion” breaks down to its constituents: beliefs about god, purpose, sacred rites, holy books and all those strands that make up the religious ties between you and your “We”. The link called “politics” does the same. As you imagine this you can see all the connections vividly, the most important connections thick like steel cables, unbreakable. When you imagine this you feel whole. A part of something bigger than yourself. Part of a tribe. Part of a family.

You now have your mind map of “we.”

Pause for another moment to internalize this picture you’ve created.

Here’s a cool visualization of the links that make up the Internet to get lost in:

“I” from “We”

Now that you are firmly rooted in your “We”, I have to wonder, what part of the whole makes the individual? Was this image created over time based on your upbringing, your income, or perhaps your genetics? Why is this your tribe and how tightly do you feel bound to them?

What would you do for the people within this cloud of connections you’ve created? Would you give your hard earned money to support them? Would you give them your time? Would you give them your life? What would you do to continue to belong to this family?

I find the dichotomy in many cultures that profess the importance of individuality while simultaneously stressing the importance of family, tradition, and loyalty to be confusing. Does your “I” depend on strands of approval those connections? Does your “I” venture out into the darkness of that beyond your tribe, or does it stay close, comforted in the knowledge that “We” have all the answers “I” need?

When you think about “I”, how much of you is held together by “We”?

Bonds, or Bondage?

I’ve seen it said that no man is an island, but I am. In fact, there’s an entire subset of people without the innate ability to create, visualize, or depend on those bonds that make “We”. Like most people, I was taught from an early age the importance of “We”. We are Family. We are Christian. We are Muslim. We are Jewish. We are Republicans. We are Democrats. We are rich. We are poor. So many different versions of “We”.

But I can’t see it. My mind map is empty when I do this exercise. I would guess that for many that thought is depressing, overwhelming, and possibly unimaginable. Maybe you feel sorry for me. Maybe your “We” does too.

I’ve chosen to see it as a blessing, because I am free. Once I stopped believing that to exist I had to belong, which I never could figure out how to do, I was able to stop trying to force those strands that make up the connections of “We” into existence . I was free to be wrong. Free to examine other forms of “we.” Free to see that:

With the bonds of “We” comes the bondage of “We”.

How many of your deep down core beliefs you hold as “truth” are really bonds that help you feel part of “We”? Is that thought too difficult to face? How many of life’s potential experiences have you missed because some of the bonds of “We” determine your actions? Do you find safety in the limitations or regret at lost opportunity?

How many good people will you never know because they are not part of “We”?

How many people in this world are “they”? When you imagine “them”, do you feel disdain and distrust? Are “they” evil? Are “they” scary? Are “they” they cause of your problems?

Most of all, what do you fear if you started cutting some of those strands? Will you be bullied, pitied or ostracized? If you identify those fears could you face them?

What will fear cause you to do in order to maintain your status as “We”?

Will you compromise your ethics to avoid becoming “one of them”? Will you support an undeserving leader? Will you become the bully? Will you refuse to speak up when you see wrong doing? Will you refuse to give “them” a chance to be heard, just because “they” aren’t contained within your mental image?

And that is the core of it all. From the beginning of this post I’ve had you creating mental images. Visualizations of what makes your reality. But if you stop to think about it that is all it is: a mental image. A picture in your head of how the world should be, and who should be in it. It is an ephemeral painting that you fight to make eternal and unchanging. And often with that fight comes intolerance, divisiveness, and hatred.

I’m not damaged. I’ve been given a gift. I can see both the power for good and the corruption that comes from “We”. I am the equivalent of a Mars rover, a robot observing and collecting data, weighing things based on logic and reason.

I’ve also been given a curse. I look in on all of the various versions of “We” from the outside, and I don’t know how to relate to you. I don’t know how to say “please just open your eyes to the bigger world” without offending. In fact, the minute I started asking people to consider their fears, some who read this became offended. Who am I to ask them to question their “We”?

So on my island, I sit alone; having loved ones around me. Part of me wishes that I could have that desire and ability to be part of a group. Despite the limitations that may come from a need to belong, I do see the advantages. Part of me wants to scream at the top of my lungs “HEY EVERYONE, YOU ARE HEADED ON A PATH THAT LEADS TO GREATER PAIN BECAUSE OF YOUR FEAR OF LOSING YOUR “WE”!”

I don’t have the right answer. So I leave it up to you. You have to decide. You have to have the courage to choose to expand your version of “We” to include everyone, despite the fact that it will break many of the ties that make your reality. For me, that process was painful, but nowhere near what I imagine it would be for someone who depends on those connections to be whole. I would guess the thought is terrifying. But I feel it is important to at least ask you to consider it. You can work to simplify the kinds of bonds that connect you to others, you don’t have to erase the whole picture.

As you tear away the pieces, you will find that you only need a single strand: “human”. When you do, there can be no more “they” or “them”.

“We will work with them” becomes “we will work together”. But I fear that it is still easier to choose to remain “We” and “they”.

Because after all is said and done there is comfort in:

“We are righteous”, “We have truth”, and “We know what is best”.


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I Got to be on the Radio

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and it wasn’t as scary as I thought it might be.

There are things in life that are unknown, and because they are unknown they are scary. About a month ago I was contacted by someone I followed on twitter and was asked to be on her radio show. That was something that I’d never done before.

For a moment, when I read that my heart jumped up in my throat and I thought “Gack!” There was a little bit of fear. (and yes, I acknowledged it and recorded it in WeFeel).

However, I really believe in WeFeel and what we can offer to therapists and the general public so I wrote back and said, “Yes” because this would be a good way to get the message out there. At that point it was easy — the date was set a month away so I didn’t even really have to think about it. So I didn’t, because when I did there was that little bit of fear again. And then the day was upon me and it wasn’t so bad.

The host of Moments of Clarity, Tiffany Werhner, put me at ease and we had a great conversation about where WeFeel came from and how it can help.

If you’d like to listen to the interview, here’s the podcast:

 

or download it


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Borrowed Trust: who’s your lender?

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 (or When did I lose my ability to decide where to eat without the whole planet’s input?)

As you navigate through this age of overloaded information, you’ll find that, by necessity, you will have to take shortcuts when it comes time to making decisions.  If you use Yelp, Amazon, EBay, or any other service that features reviews given by people “just like you” then you probably have taken one of those shortcuts.  You know what I’m talking about, ’cause just like me you’ve thought:

“I’ve never heard of The Steaming Burrito, but 92% of the reviewers say it’s the best, and so I shall dine there tonight!”*

For me, and maybe some of you, it’s become an addiction. Maybe addiction isn’t the right word.  More like it has become so deeply integrated into my process that I won’t eat it, buy it, watch it, or hire it unless I can find something online that tells me it’s OK.  Anonymous validation that if I want a steaming burrito, it’s gonna be good (and not overstuffed).

Crowd sourced information can help us make better decisions

If you are from the “When I was young our video games had 8-bits, one d-pad, and two buttons and we grateful to have it because our parents’ video games were rocks!” generation you’ll remember a time when you talked to actual people to get an opinion on a purchase, new restaurant,  or movie.  Well some of us did that, some of us who aren’t so good with the talking just found one thing we liked and stuck with it.

But even the most outgoing, know-everyone individual still had a limited pool of knowledge to draw from.  We made lots of bad purchasing decisions.  Case in point:

While people have been pondering the concept of the “Wisdom of the Crowd” for a long time (we’re talking more than 2000 years ago when Aristotle wrote about it), there hasn’t been a way for an individual to have near instantaneous access to the thoughts and opinions of huge amounts of people until fairly recently in human history.

Lior Zoref, showed us what can happen if we take the idea of crowd sourced thinking to the extreme back in 2012 when he gave the first ever crowdsourced TED talk. He recreated a classic example of guessing the weight of an OX by bringing a live ox on stage, the results are impressive.

So that settles it right?  Evidence says turning to the crowd to make decisions is a good idea. I like good ideas. I like not having to expend mental energy on figuring out if I should spend my money on the latest mediocre remake of a mediocre movie from a time when I thought giant, sarcastic turtles that know karate were a good idea.

But…(and this time I’m not gonna flip it)

When we use online opinions we are borrowing anonymous trust

One of the benefits of the good ol’ days…or maybe just ol’ days, is that when we went and asked for an opinion from someone, we also had an existing relationship of trust with that individual.  We wouldn’t have asked them in the first place if we didn’t put some weight into the validity of their response.  That’s not to say, we don’t still ask our friends for advice, but that in many cases we have taken something that used to have an initial barrier of “Do I trust what this person will tell me?” and turned it into “Since lots of people have an opinion on this, it is equally (or more) valid than that of someone I know.”

We choose to seek out someone (anyone!) who already has built a trust with whomever we want to deal with so that we can minimize our risk. Once we find them, we can borrow their trust until we have some of our own.  The more people we borrow from, the more confident we are that we have made a correct decision. And thanks to group feedback systems, there are now efficient means of borrowing huge amounts of trust:

5247 people gave it 5 stars, it must be good!

It’s crazy if you think about it, in less than a generation we went from depending on the voice of a trusted few, to the voice of thousands of random people to help us with our decision making process. There’s just a slight problem with that:

Anonymous trust can be purchased, faked and manipulated

In our efforts to make efficient decisions, we’ve inadvertently made the online review such a valuable commodity that it’s now become subject to Campbell’s law/Goodhart’s law.  The gist of these laws/rules say that the more important a measure becomes, the more susceptible to corruption it becomes and that once a measure of something becomes a target/goal, it no longer is a good measure.

For example, on Yelp you have a restaurant and you know that 5 star restaurants get way more business than three star ones.  You need to boost that rating and so you “bribe” your patrons by giving a 10% off coupon when they post a 5 star review.  You took what was a good idea, providing people with a means of judging quality, and corrupted it by buying good reviews in order to draw in even more customers. As an aside I need to mention that, Yelp is doing all they can to fight these purchased and faked reviews.

And that brings me to what prompted this post.  Back when we were working on our (unfortunately failed) Kickstarter campaign, we were contacted by people offering to sell us likes on Twitter and Facebook.  There were places that would take our money to pledge it right back to our campaign in order to make it look like we had more real supporters.

We could buy fake trust and lend it out to all those people who needed to borrow some in order to trust what we were doing.  Being the naive not-so-little Aspie that I am, it made no sense to me until I started looking into the value of borrowed trust.  It turns out cheating the system is a huge thing.

You can go to fiverr.com and find thousands of people willing to sell you a review, but if you are thinking you could make a quick buck this way, you might get sued. And if you are a merchant buying fake reviews- Amazon’s already sued thousands of its own vendors so you could be next.

So what are we as intelligent (you are still reading this post that has gone waaaaay long, so you clearly are smart) individuals supposed to do? I did the search for you and found a piece of advice that I really liked on a page from some attorneysthat will get fake bad reviews removed for you:

Trust the 3 star review

That’s something I never thought about. I normally jump to the 5 stars and then the 1 stars and ignore pretty much everything else.  Logical to me- see what the best and worst of something is.  But something in that article stuck with me:“Nobody leaves a fake three star review.”

So for me, I’m going to change how I borrow trust.  I will start by looking at the 3s; taking the time to read the comments.   People who post 3 star reviews seem to point out both the good and the bad of whatever it is they are reviewing. There’s no rabid fan loyalty and no agenda. I’m certainly not saying don’t trust places with 5 star reviews, and definitely not saying choose the mediocre 3 star somethings.

Give loyalty to the services that are the best out there.  Just be smart about the unknown.  The trust you are borrowing may not be real.  If honesty is what you value you most in your trust lender, then right there in the middle with the 3s are a great place to start.

*Ok, so I made up “The Steaming Burrito” but you know what I mean.


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Pringles Cans, Burritos and things that don’t fit.

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I generally don’t get symbolism, I’m just wired that way.  Tell me something and I’ll think you actually meant what you said. Art and literature usually don’t cause any emotional stirring within me, regardless of how much I want it to.

But music…music can move me. On rare occasions I’m even temporarily gifted the ability to see deeper than the words in a performance, and I feel touched and enlightened.

These words are the beginning of one of those experiences for me:

I can’t fit my hand inside a Pringle can.
-Bo Burnham

A lament for our time…found within the closing performance by Bo Burnham during his Netflix special “Make Happy.”  As he asks “If you feel me put your hands up,” hundreds of hands are lifted to the sky and Bo proclaims: “Look at all these hands that are way too big to fit inside a Pringle can.” “Pringles listen to the people!” “Just make them wider!” Such wisdom from a young man of 25.

OK, maybe it’s not that profound. However, as often happens with people on the spectrum, Bo’s performance got stuck on a loop in my head, and I ended up watching it over and over. Fair warning, “Make Happy” isn’t for everyone.  Bo’s sense of humor would offend the majority of my acquaintances, but, for me, the loop I got stuck in helped me find meaning in his words.

My life with Asperger’s is a lot like trying to get Pringles out of a can that is too small for my hand.

In certain situations, no matter how hard I try to fold myself to conform to a standard determined by someone else, if I try to follow my own logic, what I want is just beyond my reach. Since “my way” of thinking can’t work, I get overwhelmed and just dump everything out and pick-up what I can, hoping I’ll be able to clean up the messy crumbs when it’s done. More often than not, I just leave small disaster in my wake.

Sometimes I literally end up dumping things around me out to get to things I need because I end up overwhelmed by the process. More often it’s not something physical, it’s the frustration of trying to communicate in a way other people understand which results in me spitting out a whole lot of words. Sometimes hurting people around me…I get the feeling people don’t like Pringles crumbs spewed all over them.

I often wonder how I get myself into those situations in the first place:

I wouldn’t’ve got the lettuce if I knew it wouldn’t fit. Wouldn’t’ve got the cheese if I knew it wouldn’t fit. Wouldn’t’ve got the peppers if I knew they wouldn’t fit.
-Bo Burnham

Bo continues on to tell of a time he went to Chipotle and got a chicken burrito.  Going down the line he added ingredient after ingredient.  When he got to the end, the guy tried wrapping it up but half the stuff spilled out, thus defeating the purpose of a burrito.

Why didn’t the expert warn him he was getting too much? 

Did the expert think it was obvious that you can’t put everything in a burrito?  Did he think Bo was the one giving instruction so he must know what he wants?  Did it cross his mind that a little warning or advice could have made things better? Did he intentionally withhold the information because he gets a kick out of people’s burrito misery? (I’m sure there’s a tangent lesson in here about helping loved ones on the spectrum by telling them the obvious and not assuming their mistakes were intentional, but you can work it out for yourself.)

Regardless the burrito expert stayed silent, and Bo is left with a mess.

If only Bo had known, he wouldn’t have got half of what he did. The mantra cried over and over.  “I wouldn’t’ve got the lettuce if I knew it wouldn’t fit.”

And there is a huge part of my life with Asperger’s summed up in a silly song.

Life often feels like a series of mistakes made because no one told me what to them was obvious.

And since no one explained to me how to behave, I’m stuck feeling like an idiot with a messy burrito spilling everywhere. I think many people can relate to that situation. But for me, and perhaps others on the spectrum, it goes beyond people just not telling me how to behave. Often I’ve been told. I should know better, but I simply didn’t have the capacity at the time to link that information to the situation I found myself.

I don’t always have the ability to know what is going to fit a given situation, and that can leave me stuck looping over where I went wrong after the fact.

I wouldn’t have talked so much about my interests if I knew how to read the “obvious” social cues that you want to end the conversation.

I wouldn’t have stayed silent to the point of it being awkward if I knew this was the part where I was supposed to participate since you made a tiny pause indicating you were looking to me to speak now.

I wouldn’t have talked over you if I knew that my pause for breath told you to begin speaking.

I wouldn’t have answered your question honestly, if I knew the correct thing to do in this situation was to be polite and validate your point of view.

I wouldn’t have sat in a corner secretly plugging my ears because it’s too loud and too much is going on if I knew of a socially acceptable way to deal with being overwhelmed.

I wouldn’t have tried to fit my hand in the Pringle can.

I don’t think that I can handle this right now.

(note, the video below is not exactly family friendly)

I know everyone gets overwhelmed and plenty of “normal” people have problems trying to fit in.  It’s not a Asperger’s or Autism thing, and I don’t want to diminish anyone’s experience.  While Bo is relating his own struggle of trying to deal with life and fitting in, the song resonates with me. If you want to really “feel” the internal conflict that I think many people on the spectrum deal with everyday, take the last 60 seconds of the video or so and then loop it… for an hour or two.

Not the most uplifting post I know.

But that’s the thing- life isn’t always about happiness and being uplifted. We feel sad, angry, disgusted, or afraid sometimes, and often more than one of those at a time.  “Can’t handle this” transitions from talking about our problems to those conflicting emotions we find while trying to “Make Happy.”

But is “making happy” really the point to all this?

You’ll have to wait til my next post to find out.


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And now for something completely different…

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A little over a year ago I found myself in need of a job, and more importantly a purpose.  I had been diagnosed with Asperger’s syndrome a few years before and last year during Autism awareness month I decided to go public with that information.

The amount of support I received was great.  From comments from good friends of “that explains it!” to people thanking me because they too were in the same situation I found it encouraging to know that I had done what the right thing, despite the fact that I was terrified it would mean the end of my career as an executive.

What does someone on the spectrum do when faced with that kind of fear?  

To be honest, a huge part of me wanted to just give up, move in to my parent’s basement and play video games. I have to fight that guy off quite frequently.

Plus,  it’s hard to do that with a wife and kids. Another part of me wanted to face the fear by going out and finding a job and proving that you can still be successful and open about your differences. That part lost. Instead, I decided to do something even more difficult, and the hardest part is still ahead.

An idea is formed:

I’ve been seeing a psychiatrist off and on since I was diagnosed, and during a session I realized that some of the way that industry works doesn’t make a lot of sense.  For example, why would someone be asked to keep a mood journal, or a log of their feelings in a paper notebook of all things? Everyone has a smart device on them that is far better qualified for the job.

For that matter how can one even understand their feelings when they don’t have any data? Coming from the business world we have dashboards, charts, and ways to filter data in order to come to evidence based conclusions.

How difficult must it be for professionals in the mental health care industry do their jobs as effectively as possible when they don’t have technology to give them insight?  A doctor can use an EKG,  MRI, CT scan, or even a good old x-ray to get more data about their patient, and from that make far more accurate and helpful plans of treatment.

Why don’t we have that in mental health care?

The question of course triggered an obsession with solving the problem.  Next thing you know it’s been a year of 60-80 hour weeks, learning to program (which I’ve never done professionally before) to create cloud based storage systems, synchronization routines, dashboards, and mobile apps to address the issue.  Being autistic may have its drawbacks, but when that obsession turns to something useful there’s really nothing we can’t do.

With the help of my amazing, supportive, and creative wife Kim, we’ve created WeFeel, a service that allows a therapist to actually have data to facilitate treatment through emotion tracking, journaling, and data visualization. And a great side effect is it helps me better understand my better half because it was built to allow you to share that data with a loved one or a care provider. If you want to know more about it check us out. 

 

Step one: create first revision of a service that can completely revolutionize mental health care…Check!

But like I said at the beginning of this, the hardest part is yet to come.  You’d think creating the WeFeel service would have been the hard part. Now we’ve got to get people using it, and that means selling. And selling means talking to people.

Technology is easy. Talking to people…not so much.

Selling is something I’ve been good at, but as you can imagine it causes huge amounts of stress. I have to put on my I’m just a normal person like you outfit, and it chafes.  But without it (selling that is not the chafing)  we don’t get to eat…and I need chocolate in my life.

I’m not sure if the past year has been a way of avoiding a fear, or facing a new fear of can I build a company versus just helping someone else build theirs. But either way,  the time for burying my head in computers has come to an end and now it’s time to put myself out there again.

I’m glad I don’t have to do it alone.

Wish us luck.


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High Functioning

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For those of you in Colorado, Washington or Oregon “high functioning” is probably just another way of saying “Friday Night.” (sorry I couldn’t resist) But for some of us, it is a whole different thing.

This is Autism Awareness month and I’m since I’m not into Autism Speaks’ down in the blues campaign “Light it up blue” (which sure seems like a game 14 year old boys play on a scouting trip) I decided to do what I can to tell a small part of my story, because Autism isn’t something we just “cure.” In fact, for some of us it is something we wouldn’t want to cure.

I spent my first thirty-<cough, hrumph, cough> years lacking in any sort of self-awareness. I knew I was different, weird even. I’ve been labelled many things: Gifted, Smart, Dorky, Nerdy, Goofy, Awkward, Recluse, Successful, a Leader, a Failure, a Robot, a Genius, a Loser… With so many labels to live up to, both for good and for bad, I never was able to figure out which of them I was supposed to be.

Despite my ignorance, or perhaps because of it, I managed to rise to high levels of “success” in most anything I chose to do.  When it came to work I would obsess over knowing everything I could about what I was supposed to do, I could understand things rapidly, make seemingly intuitive leaps to solutions while others worked out the steps, and while I was always socially awkward I was usually able to get along by watching what others were doing and just copying that when forced into a social situation.

The problem with being smart and performing well at work is you get promoted.

I take that back.

The problem isn’t the promotion, which is actually fun since you get new challenges and new things to master (and for me the chance to help mentor others). The problem is the higher you reach in the corporate world the more you are expected to be an “A” type outgoing socialite.

And that I was not.

I found myself constantly rehearsing every potential upcoming human interaction in my head and then evaluating my performance afterwards. The strain of trying to master the social aspects needed to be a “success” lead to an eventual break down, which is a story for another time.

What matters is that I ended up seeing a professional who stitched the bits together to show me all of the square pegs which I had been attempting to cram into round holes. He taught me to understand why the pegs I had were square, and to accept that it is ok to be a square peg guy.

I was formally diagnosed as having Asperger’s, which now is just Autism Spectrum Disorder . I’m on the end of the disorder which contains people able to function in society (whatever that means) so I’m considered a High Functioning Autistic.

Now, I’m sure there are some people out there going “ohhhhhhhh…that explains a lot.” I’m also sure there are some that have been swayed by the media who may now think less of me because Autism/Asperger’s is something often used to scare people on the news.

Regardless of what others may think, it’s time for me to live honestly.  Time to embrace who I am and not be ashamed to admit I am different from many of you. So while I’m a little late to the party (my second preference behind not attending a party in the first place) I’m going to Light it up Red Instead.

I’ve had time to come to terms with being autistic, in fact I choose to embrace it. While autism doesn’t define me, it is part of who I am, how I think, how I work.

And you know what?

I’m pretty damn good at what I do.


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