Paradigms and puzzle pieces

A recurring theme depicts autism as a missing jigsaw puzzle piece.

A recurring theme depicts autism as a missing jigsaw puzzle piece.

I’ve been lucky enough in my lifetime to witness sweeping cultural changes with respect to race and gender equality.  Part of this was the changing larger cultural context of the times in which I grew up and part of it was because the regional headquarters of the Klan was a few miles from my childhood house.  Moving away provided an opportunity to experience some of these changes instantly rather than so gradually as to be difficult to discern.  I’m not suggesting we’ve solved all these problems.  Far from it, unfortunately.   But I am suggesting that we’ve made sufficient progress that we are now in a position to look back and learn from our successes and our failures, and to apply these lessons to inequality in other contexts.   For me, one of those lessons has been how we hack culture through language.

logo

Here there’s no puzzle just a negative space in the shape of a piece, cut from an otherwise intact blue field.

 

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I never would have guessed you’re autistic

Him? Autistic? You're kidding!

Him? Autistic? You’re kidding!

Prior to starting this blog I wrote about my Asperger’s on an as-needed basis.  When I mentioned it at all, it was peripheral to the story.  I didn’t try to avoid it, nor to keep it a secret, but didn’t really focus on it.  When I started this blog I didn’t think of it as “coming out” but apparently it was for some people.  I know this because I keep hearing things like I never would have guessed you’re autistic.  Well, don’t feel bad because for the first 40-odd years of my life neither did anybody else.  Do they think I’m weird?  Yes.  Brilliant?  Occasionally.  Funny?  On my good days.  Autistic?  Not so much.

The funny thing though isn’t the opening line in this conversation, but the second one.  Often the follow up is “so you must have gotten over it, right?”  What?  Have you met me?  Of course you have, because this isn’t something strangers ask.  Only people who have known me long enough to feel like “hey, I should have known that about him” are surprised enough to ask.  Meanwhile, I’m busy thinking “hey, after this long, I thought it would at least make sense, if not be totally obvious” so I’m surprised too.  How did this happen?

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My journey to the brink and back

This is me the year after this story takes place.

This is me the year after
this story takes place.

I originally wrote this in response to a question received in the first week after starting the blog, and then I shelved it.  After leaving school I never gave much thought to these events so when I undertook to put them to words I mistakenly believed that the most challenging aspect would be the writing itself.  Instead, I was so emotionally overwhelmed that I was unable to edit the draft and had to put the piece on the shelf.  But tonight I read about a boy named Noah who planned to take his own life on his 13th birthday.  His mom explains in the post that he has been bullied for the last year and has been cutting himself.  This is why I wrote the piece in the first place.  I want kids who are dealing with bullying in school to know that it gets better.  I can’t let this post sit on the shelf any longer.

When I was in school, I was bullied for my weight, epilepsy and Asperger’s Syndrome, although that last went undiagnosed for more than 40 years.  The first part of the post focuses on the Asperger’s aspects since these were a large part of why I was a target.  The remainder discusses the bullying and how that shaped my everyday life and outlook.  As you’ll read below, the bullying was physical and at times life threatening.  There were and are many people worse than I was but I’m sure I was in the 90th percentile as to severity.  The consensus at the time, even among friends and family, was that I’d never amount to anything.  But I wasn’t defined by those events or people’s expectations of me.  As soon as I was able, I put all that behind me and didn’t look back.  Today I’m well known in my field, in demand as a speaker, I am an author, a grandfather, and my wife and I just celebrated our 30th wedding anniversary.

There is nothing special about me other than that I made the conscious and deliberate decision to not give my bullies the satisfaction of beating me.  My wish for Noah and kids like him is to live to experience the better days ahead.  I’m not suggesting that anyone follow the path I took, only that there are many paths out of the darkness and it does get better.  I hope my story helps someone find their path.  Here then is my story.

 

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Fear and loathing in the Charlotte CBP offices

Boromir knows best.

Boromir knows best.

I continue to surprise myself.  Not necessarily in good ways.  I’m known in my family for an even temper, patience and deliberation.  My wife, kids, mother in-law — they’re the ones who get the occasional anxiety attack.  Me?  I’m immune from those.  Or at least that’s what I tell myself.  When I get too comfortable in that belief, something comes along to smack me out of it.

Today, that wake-up call came at the Customs and Border Protection (CBP) office in the International Terminal at Charlotte Douglas Airport.

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Asperger’s dating

I can’t think of anyone I’d rather be in a dysfunctional relationship with
someecards.com

Earlier today I ran across an ad for an Asperger’s dating web site.  Now I’m not at all opposed to the idea, but it seems there’s a higher requirement for compatibility here.  If two people triggered on completely different things, it would be that much harder to find activities both could enjoy.  On the other hand, think of the profiles on that site!  Megan and I were discussing what mine would look like:

Turn-offs: Crowds.  Loud noises that aren’t hard rock or heavy metal.  Strong chemical odors.

Turn-ons: Computer security of asynchronous messaging store-and-forward networks in the point-to-point and pub/sub domains.  Asymmetric keys.  Elliptic Curve Cryptography.  WebSphere MQ but only at versions 7.1 and higher with the latest fix pack applied.

Ideal Friday night: Unlimited pizza, Diet Coke and a short deadline.

Ideal Friday night WITH A PARTNER, you know, as in interacting another human being:  Oh.  Umm…Unlimited pizza, Diet Coke, a short deadline and a QA tester?

OK, we’ll spell this out for you since you are so literal minded – what’s your ideal Friday night that ends in sex?  Oh, that’ easy.  I give my daughter and her boyfriend some money to get the hell out of the house.  Then I eat pizza, drink Coke and write code whilst they have sex.

[ACCOUNT SUSPENDED]

WTF?

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Why I’m not a good role model

Our 30th year

Our 30th year

As a computer security guy, I’m financially successful, work for a world-class company, co-authored a book in my field of expertise and have had a stable career.  I’ve been married for 30 years.  To the same woman, I might add.  Raised two great kids who make me proud every day.  A few short years ago, I discovered I did all this with undiagnosed Asperger’s Syndrome.

I always felt funny about career day when my kids were in school and I think I only gave one or two presentations.  When I was tutoring students to pass their High School Equivalency exams I consistently declined to speak or enter the formal mentor program.  As an autist I have been asked several times now to talk to Asperger’s teens about life strategies and becoming independent.  After the most recent invitation, I had to stop and ask myself why the hesitation.  My conclusion?  I pretty much suck as a role model.

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Free Range Aspergian vs. Aspergian

Possible Trigger Warning: Discussion of societal prejudices, factory farming, incarceration.

Be Different: Adventures of a Free Range Aspergian

Original title and cover
of John Robison’s book

The Free Range Meme & the Asperger’s Community

This post continues a discussion from a post I made to ThAutcast’s Facebook page. Originally the post title was “What does ‘Free Range Aspergian’ mean to you?” which got a couple of interesting replies and is a worthwhile topic in its own right, but my headline didn’t match the topic.  What I really want to know is this:

If someone claims to be a Free Range Aspergian, what quality, exactly, does that disambiguate and where does that leave plain, ordinary Aspergians?

I rather suspect it is merely a one-way meme in which the term Aspergian is being irreversibly converted to the term Free Range Aspergian because the latter is embraced as positive and there is nothing to disambiguate the two terms.  Or, more correctly, there is a disambiguation but it boils down to whether an individual has been exposed to the phrase beyond their personal adoption threshold.  Some may embrace the quirky, whimsical nature of the term and enthusiastically self-nominate, others may join out of a reluctance to be in the apparently less special but undefined group that are “merely” Aspergian.

So I ask, what does “Aspergian” mean as compared to “Free Range Aspergian”?

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What not to celebrate

Trigger warning: ableism, bigotry, bullying, callous disregard for others, dehumanization, forced isolation

Kathy Lee GiffordSorry to dredge up something from last year, but dissecting this cadaver in the name of science will do much to advance our understanding of mental illness and how it relates to autism.  The Today Show ran a segment of Everyone Has a Story describing how a popular high school star athlete (Zach) befriended an Aspie freshman kid (Graham) sitting at an otherwise empty table in a crowded school cafeteria.  Eventually Graham’s mom told Zach’s mom that the friendship was a life-changing event for Graham.  Zach’s mom wrote this story up and submitted it to the Today Show as a candidate for Everyone Has a Story.  Thanks to Landon at ThAutcast whose post was my first exposure to this debacle.

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Response to Dr. Paul Steinberg’s NYT Op-Ed

Trigger warning: Ableism, bigotry, dehumanization, institutionalization, Islamaphobia, racism, zombies

Guy Fawkes

There are different ways to change public policy. When one’s profession is ethics, it is hoped practitioners would seek to change their profession from within rather than independently and arbitrarily working outside the boundaries.

Rachel Cohen-Rottenberg over at the disabilityandrepresentation.com blog wrote a post Scapegoating Schizophrenia: Paul Steinberg’s Shameful New York Times Op-Ed Column today that alerted me to some irresponsible comments by Dr. Paul Steinberg in a New York Times Op-Ed piece.  Dr. Steinberg’s comments are an example of why I felt compelled to create the Ask an Aspie blog.  After the recent shootings, some in the media irresponsibly suggested that Asperger’s is to blame.  This prompted a flurry of articles refuting the misinformation and explaining why the public has nothing to fear from people like me – a responsible, caring husband, father, grandfather and autistic person – just because I have Asperger’s. The level of misinformation, fear, hate and ignorance showing up in comments to these articles is why this blog exists and why I have been writing more lately.

But the comments that prompted me to start this blog were from lay persons and students.  The notion that a credentialed psychiatrist would write something so irresponsible, or that the New York Times would stoop so low as to publish it, are shocking.

Any patients of Dr. Steinberg should consider carefully his own statements:

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FAQ: Ask An Aspie Reality Policy

T.Rob profile photo

Someday someone will take another
decent photo of me. Until then, this is it.

Other web sites have a Privacy Policy.  I have a Reality Policy.  Welcome to my world.

Hi, I’m T.Rob.  Yes, that’s my real name.  The short story is the name was thrust upon me by a manager at a store where I was working a part-time second job and they already had a Rob there.  I resisted but after a year even my family were calling me T.Rob so I finally gave up and embraced the name.  I had no idea at the time it would eventually become a “cool” name after the Internet arrived and added a dot-something to all the other names on the planet.

The etymology of the name provides a hint as to my personal history and perspective.  I have had five different identities in my lifetime.  Four were given to me by other people, three of those against my will and under protest.  The one identity of my own choosing was displaced by the T.Rob identity after only a few years.  I have come to accept reality as being a bit more fluid perhaps than the concept of reality that most people enjoy.  I’ll write about that in detail later.  For now though, I have buried the Reality Policy in a story about why one is needed in the first place.  I hope you find it interesting.

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