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Diagnosing Psychiatrists: Making Doctors Work for You

November 28, 2011 11 comments

John Scott Holman struggled with undiagnosed autism for nearly 25 years. His diagnosis has enabled him to embrace his individuality and move forward. He writes and speaks publicly about his life with autism, hoping to inspire greater understanding and acceptance. Visit his Facebook page here.

Since my early adolescent years I have been a reluctant guinea pig for the psychiatric industry. I have been repeatedly misdiagnosed, overmedicated, poked and prodded. I’ve had Bipolar Disorder, Generalized Anxiety Disorder, Major Depressive Disorder, etc… I’ve been on every sedative, stimulant, anti-psychotic and anti-depressant on the market. I’ve endured unbearable side-effects and withdrawal symptoms. I’ve taken drugs to treat the side-effects of drugs that I was taking to treat the side-effects of other drugs! More than once, I’ve wanted to beat a shrink to a bloody pulp, but was too comatose to do so. After a few years of seeing these quacks, I went from an admittedly eccentric kid to the drooling, incoherent lovechild of Charlie Sheen and Anna Nicole Smith.

How exactly did this happen? How did one doctor after another diagnose me with such a wide variety of mental illnesses? Several decades ago a diagnosis of Bipolar Disorder, then called Manic-Depression, typically resulted in commitment to an institution. Now Bipolar Disorder is often nothing more than a trendy label, worn with pride by actors, artists and the like… ” I’m into sculpture and Kabbalah, I smoke American Spirits and I’m Bipolar.” Give me a break!

I was once seeing a psychiatrist who eyed me suspiciously for signs of mania during my every visit. I finally asked him, “How many times do you have to see me before you realize I’m always like this?”

“Well,” he said, “Maybe you’re the kind of bipolar patient who is always manic and never depressed.”

“Are you saying I’m unipolar? Is that actually a diagnosis? Maybe I’m just hyper…”

As many of you know, I’m autistic. This diagnosis is unquestionably valid and has radically altered the course of my life and the way I view myself. How did I go through a decade of constant psychiatric treatment without anyone catching on? Well, for starters, there are a limited few pharmaceuticals approved for the treatment of autism.. There are literally dozens of medications used to treat the symptoms of Bipolar Disorder. You do the math…

This rampant tendency towards over diagnosis belittles the struggles of people who actually have these disorders, and instead of treating symptoms, often creates them in individuals given extremely powerful and dangerous drugs without due cause. I never had an anxiety disorder until I became dependent on anti-anxiety meds called benzodiazepines, which were originally prescribed to me to treat the agonizing side-effects of an anti-psychotic. I guarantee that anyone prescribed escalating doses of sedatives will develop some major issues. But the more issues you have, the more issues you will seek treatment for. The psychiatric industry doesn’t stand to make much money from a patient without psychological complaints.

An equal but opposite problem is caused when perfectly valid treatments are withheld from patients for irrational reasons.  Most doctors receive the majority of their pharmaceutical knowledge from representatives of the pharmaceutical companies. Also, many doctors receive kickbacks from big pharma for prescribing their meds. Because of this, tried and true treatment options are passed over in favor of “the next big thing.” However, these new pharmaceuticals have not yet been proven to be any more effective than their more affordable predecessors, if, indeed, they are any different at all.  The pharmaceutical industry is a lot like Hollywood; the latest blockbuster is usually just a sequel or remake. Drugs that have worked for decades are often tweaked, reformulated, renamed and presented to the public as something revolutionary (this is the case with a myriad of extended release medications, whose instant release counterparts are often just as effective for a fraction of the cost).

When seeing a shrink, it is important to check out the office swag; if the clock on the wall, the paperweight on the desk, and the pen in the doctor’s hand are all labeled with the name of a certain drug, chances are you will find that name on you prescription. Sadly enough, that doctor probably found the same name on their ticket for an Alaskan cruise.

If you find any of this alarming, you probably haven’t been lobotomized by the psychiatric industry or are currently too overmedicated and uniformed to know the difference. If you are seeing a psychiatrist or plan to do so, please, save yourself money and heartache; do your research! No one should go through the hellish and unnecessary experience that I did. Are you sure your diagnosis is correct? Are you taking the most effective, affordable, and time-tested medications?

Ask plenty of questions. Make suggestions. No patient should ever be afraid of their doctor. Remember, your doctor works for you!

I am by no means an opponent of pharmaceutical intervention, and have received enormous benefit from the right medications.  Unfortunately, the road to psychotropic success was unnecessarily long and painful.

It seems the psychiatric industry suffers from some nasty symptoms, including reckless disregard for the safety of others, lying, lack of remorse, and consistent irresponsibility.  According to the DSM-IV, these symptoms indicate a diagnosis of Antisocial Personality Disorder.  Now, I’m not a doctor (I just play one in real life) so I can only suggest that the psychiatric industry be given a diagnosis of APD and prescribed…  a dose of their own medicine.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

In Their Own Words – My Neurotypical Costume

October 31, 2011 7 comments

John Scott Holman struggled with undiagnosed autism for nearly 25 years. His diagnosis has enabled him to embrace his individuality and move forward. He writes and speaks publicly about his life with autism, hoping to inspire greater understanding and acceptance. Visit his Facebook page here.

“I want friend like me.” – Frankenstein’s Monster, The Bride of Frankenstein

Most people enjoy taking one day out of the year to don a convincing mask or costume.    Halloween has always been my favorite holiday, not because I enjoy disguising my true identity, but because I get so tired of it.  October 31st is the one day of every year when no one expects me to pretend to be normal.

As a child, I divided each year into two categories – Halloween, and the 364 boring days. “Scotty boy, why are you still awake?” my mother would ask.  “It’s after midnight.  I knew you shouldn’t have eaten all that candy.  Halloween is over.  Get in bed.”

“I’m planning my costume for next year.  I’ll go to sleep when I’m finished.”

I’ve always been intrigued by the macabre, the supernatural, and things that go bump in the night.  I identify with the misunderstood outsiders (a.k.a. the villains).  The Wizard of Oz always made me cry – that poor witch!  She didn’t ask to be green and ugly.  Is it a crime?  Ask Kermit the Frog – “it’s not easy being green.”

At eight years-old, I became obsessed with Universal Horror Films of the 1930s; Frankenstein; The Wolfman; Dracula; The Mummy; The Invisible Man. These “monsters” were my friends and allies.  They too were mislabeled, misunderstood, and mistreated, and their stories helped me to feel less alone.

In sixth grade, I saved up my money and bought a very realistic, rubber Frankenstein mask.  I wore it to school on Halloween day and was teased relentlessly.  It probably didn’t help matters that the mask was entirely too big for me – I could barely see out of it and kept running into walls.

The next year, my parents helped me to throw a massive Halloween party.  My entire class was invited, and my mom made sure it was the kind of party that no seventh grader would want to miss.  I dressed up as Groucho Marx.  About a hundred costumed seventh graders were gathered around watching the infamous shower scene in Alfred Hitchcock’s Psycho, when I dropped a fake body off the balcony and into the crowd!  That year was much more fun – serves the bullies right!

As I grew older and began yearning for the acceptance of my peers, I learned to hide my autistic quirks and blend in with the crowd.  It wasn’t easy, but I became very good at wearing a neurotypical disguise.  Abercrombie and Fitch?  Check.  Hair gel?  Check. Lack of interest in anything besides cars, beer and girls?  Well, it couldn’t hurt to pretend I was interested in those things.  Then I just peppered my language with sarcasm, curse words and inane remarks – voila, a neurtotypical teenager!

Pretending to be normal was exhausting, but there was always Halloween.  I still get excited when the leaves turn and the air bites.  By now, I’ve learned to stop pretending.  I accept myself for who I am.  The torch wielding villagers get annoying, but I don’t let them put a damper on my spirits.

Now that I have some autistic friends, I understand myself.  I love who I am, and if others are alarmed by my eccentricities, so be it!  It’s not easy being green, but I’ve learned to love every minute of it.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

Communication Breakdown: Hacking Autism Provides a Dose of Technology – Part III

October 24, 2011 23 comments

John Scott Holman struggled with undiagnosed autism for nearly 25 years. His diagnosis has enabled him to embrace his individuality and move forward. He writes and speaks publicly about his life with autism, hoping to inspire greater understanding and acceptance. Visit his Facebook page here.

Read Part I and Part II

“Communication Breakdown: Hacking Autism Provides a Dose of Technology” is a highly personal representation of an exciting event, and a rare and detailed glimpse into an autistic mind.  Holman’s account is unprecedented in autism journalism.  More than a simple, factual record, it is an artistic statement – one autistic interior on display.  The situations and dialogue within this story are colored by the author’s heightened self-awareness – reality becomes a mirror to reflect the isolated inner world of autism.  This world is rarely communicated to an audience.  Holman offers autistic journalism, seen through the narrow lens of a pop-culture soaked imagination.  This is journalism in technicolor.

Alex was growing frustrated.  “The lighting in here is awful!  I can’t work with this!  And why are all these people so noisy?  Can’t they see we’re filming?!”

It isn’t easy to be an obsessive autistic.  Our lives are often governed by a single, narrow pursuit, and anyone with a separate agenda is simply in our way.

“What are they doing that is so important?!” Alex fumed.  “We’re making a movie!  Who invited all these people?”

“Um, those are the developers,” I said.  “I think they are kind of important.”

Andy Shih sat before us, quietly observing our executive dysfunction.

“I have an idea!” I declared, climbing onto a nearby table.  I kicked aside a stack of brochures, and lifted an imaginary bullhorn to my lips.  “QUIET ON THE SET!” I bellowed.  My library voice can be heard by anyone within a mile radius.  You can imagine the thunderous volume of my announcement.

The room fell silent.  I hopped down from the table, quite pleased with myself.  “I’ve always wanted to say that!”

I took a seat before the camera, excited to begin the interview.

“Get a little closer to Andy,” Alex said, squinting into the viewfinder. I slid closer, bouncing and fidgeting.

“Closer…” Alex said.

“Closer?!  You want me to sit in his lap?”

“Please don’t…” Shih stammered.

I had never conducted an onscreen interview.  I felt like the dude from Inside the Actor’s Studio!  I waited for Alex’s cue.

“Alright, make it happen guys!  One… two… three… action!”

My first interview went rather well – I barely interrupted at all.  The footage will be available when Alex wraps up post-production.  Alright, Plank, stop reading this article – you’ve got a movie to edit!

I thanked Shih and wandered off to abduct someone important for our next interview.  Luckily, I was distracted by a group discussion in the dining area.  Marc Sirkin, Peter Bell, and Steve Silberman were gathered together in heated debate.

“Do I hear opinions?” I said, plopping into a nearby seat.  “I’m sure you’re all wrong.”

“Nice to see you again,” Steve said.  “We’ve been discussing autistic self-advocacy.”

“Uh oh,” I groaned.  “The last thing we need is a pitchfork wielding mob parading through Alex’s shots.”

Marc laughed.  “It is a controversial subject.”

“Has anyone seen my soapbox?” I said, looking about.

“Huh?”

“Oh, I’m already standing on it… Black and white thinking is a recognized symptom, and one which casts a troubling shadow over autism politics. We’re not characters in some autistic version of Star Wars.  This isn’t about heroes and villains… though I wouldn’t mind seeing Peter here cross light sabers with Ari Ne’eman.”

“Do I get to be in the movie?” Marc asked.

“You’re a storm trooper… but your scene was cut.”

“Autism Speaks has made mistakes.  We’re all learning.  Autism was poorly understood when I was a kid.  I lived 24 years without a diagnosis.  Awareness is spreading.  It is only natural to see more people being diagnosed.  We finally know what to look for.”

“Aren’t you offended by the notion of a cure?” Steve asked.

“I don’t know what that means, and I’ll give five bucks to anyone who can offer a simple explanation.”

No one made a sound.

“Anyone?  Mark?   Bueller…?  Bueller…?”

I’d have to remember this little challenge the next time Alex needed a quiet set.

“Good, I’m broke anyway. Autistic pride is great, but we need to remember those who can’t advocate for themselves, or communicate at all.  The promise of a cure brings hope to many devastated families.”

“False hope?” Steve asked.

“Maybe, but people need hope.  More importantly, they are willing to pay for it.  We may never find a cure, but there is no telling what will be discovered along the way.  Knowledge is a powerful asset.  I’m not opposed to genetic research, but I’d like to see a greater emphasis on services and support – that’s why I’m sitting here with you fine people!”

The conversation continued for some time, everyone offering valuable insights.  I realized, quite suddenly, that precedents were being broken all around me.  For far too long, the autistic community has been relegated to either side of a massive, ideological divide.  In that moment, we were unknowingly constructing a bridge.  This was truly an unlikely meeting of minds, and a rare dialogue.

Progress depends on the cooperation of many.  Communication is the first step. 

I thought of Kat.  “Has anyone seen my girlfriend?”

I found Kat doing homework in a corner of the lobby.  Her frustration was evident.

“You want to come get some more pictures?” I asked.

“I got some already,” she said, without looking up.

“Well, we could  always use more.”  I was trying my best to include her.

“I’m studying.”

“Kat, what’s wrong?”

She sighed and closed her book.  “You know,” she said, “you’re a lot like Alex.  I guess I never truly realized…”

“Realized what?”

“Never mind,” she said, reopening her book.

I stood awkwardly for a long, silent moment.  “Oh, there’s Phil,” I said.  “We have to interview Phil!”

It seemed the day would never end, and I didn’t want it to.  I sat down for many more interviews and conversations, all of them fun, fascinating, and fleeting…

I was living my dream, and feverishly taking notes, a longstanding outsider recording his moment on the inside, trying desperately to capture a dream and keep it forever.  I knew I would wake up soon enough.  Like Cinderella, I was afraid to enjoy an expiring spell.  The stroke of midnight would not reveal my elegant coach to be a pumpkin, but I knew my press pass would look an awful lot like a nametag when the day was over.

I wanted to share my happiness with Kat – it was too abundant for me to keep to myself – but she was nowhere to be found.

I ran into Marc, who told me the development teams had completed their applications.  “Have you seen Kat?” I asked.

“Didn’t she tell you?  She walked back to the hotel.”

I followed the crowd into the conference room and slumped into a chair.  The developers presented their applications, brilliant technological tools which would enable communication for countless autistics.  I tried to pay attention, but I was confused and exhausted, lost in my own communication breakdown.  One developer presented a bonus application, which he had created on his own while the rest of his team worked together.  That was me, always doing my own thing, lost in my own obsessions, while the rest of the world worked together.

I sat on the edge of Alex’s bed.  “You feeling alright?” he asked.

“People come and go,” I said.  “At first they like me.  They want to help me.  After awhile they realize that I’m not going to change.  They get angry… then they leave.”

“I’m glad you’re my friend,” he said.

“Thanks, Alex.  I’m glad you’re my friend too.”

What else could be said?  It had been a long day.

The San Francisco airport was nightmarishly crowded.  The line through security seemed to stretch on forever.  “Kat, I really don’t like lines.  I’m going to tell them that I’m autistic so we can go through the short line.”

“You’re going to play the autism card just because you’re impatient?” Kat scoffed.  “No one here likes lines any more than you do.”

Ashamed, I followed Kat to the end of a massive, slow moving crowd.  “This isn’t so bad,” I said, attempting to be cheerful.  But it was bad; the line never seemed to move and the swaying herd of travelers was closing in on me.  I began shaking my legs and flapping my hands.

“Stop it!” Kat hissed.  “You’re embarrassing me.”

“Sorry… I just… I really don’t like lines.”  I could feel the sweat on my forehead.  I couldn’t breathe.

I was on the verge of a meltdown by the time we reached security.  Kat went first, making it effortlessly to the other side.  I was alone.

“Sir!” a large, threatening security guard shouted at me.  “Your bag won’t fit.”

“What are you talking about?!  They said I could carry it on!”

“You can carry it on, but it won’t fit through the x-ray tunnel that way.  You have to turn it around.”

“Huh?” I was baffled.  I couldn’t make out the guard’s words.  I stood there stupidly, my heart beating out of my chest.

The guard grunted, and stormed past me.  He lifted my bag, rotated it, and set it back on the conveyor belt.

“I’ll need you to remove your hat,” he said, sternly.

“My hat?!”  I really hate taking my hat off.  Hats are a sensory comfort, and I feel vulnerable and anxious without one.

“Sir,” he thundered, “I need you to remove your hat!”

“I HEARD YOU!” I screamed.  The entire airport fell silent.  I’m surprised I wasn’t arrested on suspicion of terrorism.

I didn’t speak to Kat until we had boarded the plane.  We found our seats, and I regained my composure.  Finally, I turned to her.  “Kat?”

“Yeah.”

“A relationship, I think, is like a shark. You know?  It has to constantly move forward or it dies.  And I think what we got on our hands is a dead shark.”

“That is a quote from the movie Annie Hall,” Kat said.  The disdain in her voice made me shudder.

“It is…?”

“You know it is.  It’s from the scene where Alvy and Annie break up on the flight back from California.  Are you using stolen Woody Allen material to break up with me?”

“No, I’m not trying to break up with you.  I just don’t know what to say.  I’ve never fought with a girl on a flight back from California.”

“Life isn’t a movie!”

The plane’s air conditioner was on the fritz.  The heat was oppressive.  Passengers were fanning themselves with barf bags.  “This must be what the Amazon feels like,” I muttered.  I caught sight of a stern looking stewardess several rows ahead of me.  “I WANT MY MONEY BACK!” I shouted towards her.

Giggles erupted throughout the plane.  “You’re not nearly as funny as you think you are,” Kat scowled.  “Stop embarrassing me.”

Now I was mad.  I cleared my throat, and began singing at the top of my lungs, “I’m dreaming of white Christmas…”

The passengers howled with laughter.  “I hope you’re happy,” Kat said.

“One of us has to be, at least once in awhile.”

“You said you were afraid of living in a world that didn’t include me, but you never did!  You’re too wrapped up in your own world!”

“That isn’t fair.  I warned you about this.  I tried to make you understand.”

“Oh, so now it’s my fault?  I didn’t research autism enough?  I wear a puzzle piece around my neck every day!”

Kat was crying now.  I knew that I should comfort her, but I was too angry.

“No, you did plenty of research,” I said, sarcastically.  “You put on a necklace and now you understand me!”

Kat’s face went blank.  I couldn’t read the emotion in her eyes.  Was she sad?  Angry?  Scared?  Her hands trembled as she ripped off the necklace and threw it to the floor.  I watched a tiny silver puzzle piece dance down the aisle… as everything faded out around me.

My parents drove me to the emergency room.  Kat had left me at the airport.  My typically inaccessible emotions had built up over the trip.  They came erupting to the surface, all at once, in a meltdown to end all meltdowns.

I paced frantically, up and down the ER lobby, flapping my hands, gnashing my teeth, and breathing heavily.  I was finally sedated.

I spent the next five hours crying in a hospital bed.  My mother sat beside me, stroking my head.  “Don’t leave me here,” I begged.  “Don’t let them put me in a mental hospital again.  Don’t leave me…”

“I’m not going to leave you,” she said.  “I’m never going to leave you.”

“But Kat left me.”

“I’m sure she had her reasons,” my mother assured me.  “Relationships are tough.  She is young and confused.  She didn’t mean to hurt you.”

I thought of the closing line in Annie Hall, “After that it got pretty late, and we both had to go, but it was great seeing Annie again. I… I realized what a terrific person she was, and… and how much fun it was just knowing her; and I… I, I thought of that old joke, y’know, the, this… this guy goes to a psychiatrist and says, ‘Doc, uh, my brother’s crazy; he thinks he’s a chicken.’ And, uh, the doctor says, ‘Well, why don’t you turn him in?’ The guy says, ‘I would, but I need the eggs.’ Well, I guess that’s pretty much now how I feel about relationships; y’know, they’re totally irrational, and crazy, and absurd, and… but, uh, I guess we keep goin’ through it because, uh, most of us… need the eggs.”

Kat was right, life isn’t a movie.  It doesn’t always follow the script you’ve written in your head.

Life is difficult… but love is worth it.  I know that I am loved, and that I love in return.  I may have difficulty communicating my feelings, but I feel deeply nevertheless.  I have learned that no matter how irrational our emotions may be, they are always valid.  We must understand if we are to love, and we must communicate if we are to understand.

In an article called Where Have I Been All My Life, written shortly after I met Kat and received my diagnosis, I expressed the beauty and pain of living on the autism spectrum.  ‎”To have Asperger Syndrome is to feel as if you roam the world in an antique diving suit, cut off from everyone. Though something of what others say can be interpreted, their words are muffled by a devastatingly beautiful, frightening and complex symphony. This has been the source of both my lifelong joy and solitary despair, for as much as I would like to share this music, it seems no one else can hear it.”

I love who I am, and I will keep following the music.  I may be marching to the beat of my own tone deaf drummer, but the music makes me happy.  Perhaps, one day, I will find the words to share this music with someone else.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

Communication Breakdown: Hacking Autism Provides a Dose of Technology – Part II

October 21, 2011 32 comments

John Scott Holman struggled with undiagnosed autism for nearly 25 years. His diagnosis has enabled him to embrace his individuality and move forward. He writes and speaks publicly about his life with autism, hoping to inspire greater understanding and acceptance. Visit his Facebook page here.

“Communication Breakdown: Hacking Autism Provides a Dose of Technology” is a highly personal representation of an exciting event, and a rare and detailed glimpse into an autistic mind.  Holman’s account is unprecedented in autism journalism.  More than a simple, factual record, it is an artistic statement – one autistic interior on display.  The situations and dialogue within this story are colored by the author’s heightened self-awareness – reality becomes a mirror to reflect the isolated inner world of autism.  This world is rarely communicated to an audience.  Holman offers autistic journalism, seen through the narrow lens of a pop-culture soaked imagination.  This is journalism in technicolor.

We arrived at HP’s Executive Briefing Center and strolled into a crowded lobby, where I was given a press pass with my name on it! Well, it may have been a name tag, but I’m choosing to believe it was a press pass.

“Are we late for breakfast?” Alex asked. “I want bacon. I’m going to be very disappointed if there isn’t bacon.”

We filed into a large conference room where I grabbed some yogurt and a cup of coffee. There wasn’t any bacon. Alex was very disappointed.

Kat and I took a seat in the front row next to Alex, who was already clutching his camera, ready to record the coming events. James Taylor (Director, Experience Marketing, Personal Systems Group, HP) stepped behind the podium. I’d been introduced to Taylor the previous evening. Several hours after meeting him, I accidentally referred to him as James Brown. “Sorry,” I said, “wrong musical genre entirely.”

Taylor made a few introductory remarks before clearing the stage for Phil McKinney, the bearded fellow from Hacking PDD-NOS… er… Hewlett-Packard. McKinney spoke of his daughter, a speech pathologist who has worked with autistic children in Rwanda. It was her passion which inspired his involvement in Hacking Autism.

McKinney became visibly emotional while discussing the lack of resources in Rwanda and other underdeveloped countries. Often unaware of my own feelings, I find public displays of emotion to be a bit alarming. I may have cried once or twice while watching ET: The Extraterrestrial – alright, I cry every time I watch ET – yet remove the homesick alien and I’m about as weepy as Hannibal Lecter.

I leaned towards Kat, and attempted to use my library voice, “Why is that dude crying in front of all these people?” Kat promptly elbowed me in the ribs. Apparently, my library voice did not escape the detection of HP’s Vice-President – don’t judge me, I was in the first row!

“Our mission is to give people with autism a voice, and the ability to participate and contribute,” McKinney declared, his vulnerability suddenly replaced with trembling conviction. “People on the spectrum are valuable members of society!”

My goodness, I thought, how on earth do neurotypicals shift emotions so rapidly? Where do they keep all those feelings?!

Politely controlled applause followed McKinney offstage. Other speakers replaced him, one by one. Andy Shih (Vice President, Scientific Affairs, Autism Speaks) began his presentation with a brief description of autism spectrum disorders, and the genetic and environmental factors which may contribute to their origination. He then proposed that genetic testing will soon be used to diagnose autism. Though clearly of scientific mind, Shih took care to emphasize the importance of training, services and support.

I missed Shih’s conclusion – I really had to pee – but determined to catch up with him later for an interview.

I hurried back from the bathroom, arriving just in time for the opening of a compelling presentation by Peter Bell (Executive Vice President, Programs and Services, Autism Speaks). Bell was handsome and reserved, yet boyishly enthusiastic; the high school quarterback, all grown up, and wearing a suit. I recognized him from an appearance on Autism Talk TV. Though every other detail of the episode escaped me, I remembered that Bell’s mouth had seemed rather dry – being autistic, I have both supersonic

hearing and an oddly selective memory.

Pete must have had a glass of water before speaking at the hackathon – his voice was strong and clear. After detailing the troubled history of the autism diagnosis, Bell suggested that social and scientific enlightenment will create a brighter future for the autism community. “We are entering the age of hope.”

If autism is, indeed, experiencing a renaissance, Bell has good reason to celebrate. His son has a diagnosis of PDD-NOS. “At home, we say PDD-NOS just means the doctor couldn’t make up his mind,” he grinned. Though he has retained his optimism and sense of humor, it is evident that his son’s struggles have impacted Bell enormously.

I thought of something Marc Sirkin had said to me that morning, “Peter has come a long way. He’s been through a lot, and has fought hard to make more services available for autistic adults. Our organization has changed because of Peter. He wouldn’t let up. He did it for his son.”

I looked over my shoulder, thoughtfully surveying the conference room. It was crowded with developers, photographers, writers, and people in suits with long, boring titles that would later clutter up my article (Super Chief Executive, Important Corporate Stuff, His Royal CEOness…). Many members of the crowd had been personally affected by autism. The bleeding hearts were easy to separate from the contractually obligated attendees – their professional restraint could not hide their reluctant hope. These were the people with a stake in the game.

Bell continued, discussing the recent explosion of autism awareness in popular culture. “The face of autism is changing,” he stated. “It is no longer a childhood disorder. 500,000 children with ASD will become adults in the next decade. Autism Speaks is now focusing on advancing the future of autistics by providing services.

The four pillars of Autism Speaks are family services, science, awareness and advocacy.”

Heavily criticized for my involvement with Autism Speaks, I could not pretend Bell’s organization was without its share of opponents. Where did Autism Speaks fit into this age of hope, of social and scientific enlightenment? Did Hacking Autism represent a greater step towards acceptance and the provision of services?

Shannon Kay (Director, May Center for Child Development) further clarified Hacking Autism’s aim to “use technology as medicine.” Technology as a treatment for autism? I found the simplicity of this concept to be striking and brilliant – Duh, why hadn’t I thought of that?

“Technology,” she said, “allows for easy access to a wide vocabulary, and offers non-verbal autistics a portable voice. I have seen technology build a bridge between people with disabilities and their non-disabled peers.”

I am lucky. I have never been without a voice. On my worst days, autism may cripple my spirit, leaving me isolated by invisible barriers… yet I’ve never been without hope. A bit of technological medicine would likely make my life more convenient. Convenience is nice, but many autistics are awaiting treatment to make life bearable.

It was time for the application developers to split into teams. Kat and I stood, and followed the flow of traffic. I realized that I had not seen Kat smile once that morning. “What’s wrong, Kat?”

“Nothing,” she said, dismissively.

“Can’t you at least pretend to be happy? I pretend to feel things all the time.”

She paused and stared at the floor. Her eyes were blank. Her skin was pale, almost translucent, like a drop of milk spreading slowly in a glass of water. “I know you do,” she said. “You pretend to understand me. You pretend to care about me.”

“I care about you.”

“You don’t know me. You can’t recognize my emotions. I’m not a character in a movie. I can’t always say my lines the way you want me to. My emotions aren’t invalid just because they don’t make sense to you.”

“Your emotions don’t make sense to me right now.”

“I don’t like playing the supporting role to your lead. I don’t like coming second to your obsessions. You can talk about pharmacology or old movies for hours, but when I talk, I’m lucky if you even pretend to listen. I want to share my feelings with you, but I know that you won’t care, because you don’t understand. We don’t communicate. We can’t…”

“Kat, where did this come from? I…”

“You ready to get some interviews?” Alex appeared suddenly at my side, his eyes bright and eager.

“Yes!” I said, seizing the opportunity to escape an argument. I grabbed Alex by the arm and led him away. “Say Alex, isn’t Gary Busey autistic?”

“I don’t think so. I’ve never thought about it.”

I could feel Kat’s eyes on me as I walked away. My stomach sank, just for a moment, before I quickly forgot my uneasiness. The day was only beginning. I was more than excited – I was dancing on the ceiling. Life looked perfect from my deliriously distant perspective. Everyone else looked like ants circling my feet. I had no time for them. I was far too high to think of coming down.

To be continued…

Communication Breakdown: Hacking Autism Provides a Dose of Technology – Part I

October 17, 2011 27 comments

John Scott Holman struggled with undiagnosed autism for nearly 25 years. His diagnosis has enabled him to embrace his individuality and move forward. He writes and speaks publicly about his life with autism, hoping to inspire greater understanding and acceptance. Visit his Facebook page here.

“Communication Breakdown: Hacking Autism Provides a Dose of Technology” is a highly personal representation of an exciting event, and a rare and detailed glimpse into an autistic mind.  Holman’s account is unprecedented in autism journalism.  More than a simple, factual record, it is an artistic statement – one autistic interior on display.  The situations and dialogue within this story are colored by the author’s heightened self-awareness – reality becomes a mirror to reflect the isolated inner world of autism.  This world is rarely communicated to an audience.  Holman offers autistic journalism, seen through the narrow lens of a pop-culture soaked imagination.  This is journalism in technicolor.

*Dedicated to my sister Kassidy, who would have been 16 years-old today. I hope that my writing makes her smile and laugh. I will never stop missing the sound of her laughter.

“I rode the BART here.  I pushed the disability button and saved 75 cents!”

Alex Plank, the 25 year-old founder of wrongplanet.net, squinted thoughtfully behind his bottle cap glasses. “I wanna rent a car to take us to the event though,” he continued.   “Who’s paying for it? We should get a limousine… or a Hummer!”

Alex and I had flown to San Francisco to attend an autism hackathon.  Hacking Autism aims to use free technology to give people with autism a voice.  Teams of developers had been assembled for the hackathon, and would spend the day creating touch-enabled applications.  Alex was hired to document the event on video. I would be assisting him and gathering information for an article.

Before shaking hands with Alex, I had never met another autistic adult. I felt like a domesticated puppy, the only canine member of my family, on my first trip to the dog park. Sitting in the apartment of writer Steve Silberman, we observed each other quietly, getting comfortable with one another before engaging in a casual conversation which a neurotypical observer might have mistaken for a heated argument.

Alex’s frosted hair was spiky and disheveled, as if he had emptied a can of Aqua Net onto his head while standing in a hurricane simulator.  He wore tight black jeans, a studded belt, and a flannel shirt. “This shirt was worn on the show Entourage,” he said. “I bought it at a wardrobe sale. You like it?”

“Sure,” I said. “Which character wore it?”

“I dunno… I’m pretty wrapped up in Dexter right now.”

“Maybe you should get a shirt from that show.”

“What’s wrong with this one? I thought you liked it?”

“I think it is about time to call a cab,” Steve intervened. Steve was interviewing Alex and I for a book about the autism diagnosis and the rise of the neurodiversity movement. Simultaneously interviewing two longwinded and enthusiastic autistics proved challenging and the interviews were postponed.

“I want to rent a car,” Alex said.

“Fine,” Steve replied, “but you’d better hurry. You don’t want to be late for the event.”

“What event?” I asked.

“Um… the event you are writing about…”

“Oh yeah, that event!  Steve, do you think I’ll get a press pass? I’ve never had a press pass. This is so exciting!”

“Should I just Google expensive limousine service?” Alex asked.

“Let’s try to be as economical as possible,” Kat suggested. My girlfriend, Katherine, had come along to San Francisco as well. Her presence proved to be a good investment; without her intervention, Alex and I may have arrived at the event in a tank used on the set of Band of Brothers.

“Wow, these limousine services are expensive!” Alex said. “I’ll just type in inexpensive car service.”

We bickered over transportation for another hour before finally deciding on a black car service. The driver arrived promptly and Steve hurried us out the door.

Kat became nauseous during the ride, and asked the driver to pull over so she could step outside for some fresh air. The driver, a perfect stranger, stood patting Kat’s back on the side of the road, while Alex and I waited in the car, unwittingly modeling the autistic empathy deficit.  “I hope she doesn’t puke…” Alex groaned.  A highway patrol car pulled up behind us. The officer stepped outside, strolled over, and leaned in to speak to Alex and I. “What seems to be the problem?” he asked.

“Oh, don’t worry,” I said, avoiding the officer’s eyes. “My girlfriend is very drunk… and underage.”

The officer grunted in confusion and walked off to speak to our driver. 

“Why did you say that?” Alex asked.

“I dunno,” I said. “I’m bored… Are we there yet?”

Further confusion resulted when Alex discovered that Kat and I had a reservation at a hotel down the street from him. “This will not do. Your hotel is nearly a mile away. How are we supposed to work together… and stay up late talking?”

“Kat, I need you to fix something!” I hollered.

“Babe, I’m sick,” Kat moaned.

“Oh, sorry Alex, it looks like you’ll have to do it yourself.”

“Ok, dude,” Alex said, whipping out his cell phone and calling the hotel. I was impressed; though Alex struggled a bit, he managed to make all the necessary arrangements. We would be staying right across the hall from each other.

We arrived at the hotel, thanked the driver for his patience, and scrambled inside to get ready for dinner. Kat needed to rest, so I joined Alex in his room, where he was clutching an iron and cursing a slightly wrinkled piece of Entourage memorabilia.

“Do you know how to iron a shirt,” he asked.

“No,” I said. “I’ll go get Kat.” Poor Katherine… no wonder she complained of feeling like a frazzled mother. After six hours on an airplane, and three hours with Alex and I, she decided to call it an evening, politely refusing the dinner invitation.

Marc Sirkin arrived thirty minutes later to pick us up and take us to his hotel, where the dinner was scheduled.  Alex was not quite comfortable with the fact that Marc was staying at a separate hotel, but he did not protest.  Marc is the Chief Community Officer for Autism Speaks. Apparently, that is an important position – I like him because he has nice hair and responds to my emails.  “Where’s Kat?”

“She got drunk,” Alex said. “She is underage but the officer didn’t arrest her.”

“I thought Kat was 24,” Marc said.

“She is,” I yawned. “Don’t worry about it.”

The dinner, held in the hotel ballroom, was a far more formal event than I had expected. Everyone appeared to have purchased their attire at a Madmen wardrobe sale (that joke is getting old, but I have a tendency to perseverate). I was wearing jeans, a bright orange stocking cap, and a Velvet Underground t-shirt. I turned to a bearded gentlemen standing beside me. “I think you’re a little overdressed,” I said. “I’m Scotty. Who are you?”

“I’m Phil McKinney,” he said, extending his hand.

“Are you with Autism Speaks?”

“No, I’m the Vice President and Chief Technology Officer of HP.”

“Hmm, sounds fancy. What’s HP? Does that, like, stand for Hacking PDD-NOS?”

“No,” he laughed. “HP stands for Hewlett-Packard.”

“Hubert Packard? Is he here? Have I met him?”

Alex rolled his eyes. I scooped up my seventh shrimp from a tray of appetizers. I couldn’t find a trash can, and my pockets were quickly filling with shrimp tails. It was very hot in the ballroom and I was becoming uncomfortable.

Dinner was finally served and everyone moved to take their seats. I was confused by the lack of assigned seating. “Who wants me to sit at their table?!” I shouted across the room. There was an awkward silence. “Sit here,” Alex said, tugging on my shirt.

“But I wanted to sit with Hubert…”

“Who?”

“Never mind.” I took my seat next to Alex and ordered the pan-seared sea bass.

The dinner conversation was a bit confusing. Everyone was talking about the stock market, politics, and technology – subjects I do not understand.  A ten year-old aspie named Schuyler had been my saving grace during the pre-dinner mingling. Unfortunately, he was sitting with his father at another table.  Finally, the discussion shifted to the topic of autism, and I proceeded to dominate the conversation until dessert arrived. I’m an excellent conversationalist… so long as no one else wants to talk.

“Have you heard from Kat?” Marc asked.

“No,” I sighed. “I think she is mad at me. She was sick and I didn’t know what to do. I need someone who understands emotions to go talk to her.”

After the dinner, everyone broke into groups to continue discussing things I couldn’t understand. Alex and I chatted in a corner.

“So your girlfriend is mad at you?” he asked.

“I think so. I feel guilty. She wants to believe I’m capable of a normal, adult relationship, but I’m just not. I’m autistic – nothing will ever be normal for me. I don’t understand her and she doesn’t understand me. I try really hard to explain myself but everything gets lost in translation.”

“Tell me about it!” Alex said. “People don’t understand why autistics like us just don’t understand.”

“I like to think of myself as pretty high functioning, but I can’t avoid these communication breakdowns. Do I seem high functioning to you?”

“Dude, you’ve got so much autism it isn’t even funny. That’s alright though, ‘cause I do too. We wouldn’t be sitting here if we didn’t.”

“Thanks. You’re a good friend, Alex.”

“Don’t mention it. You want to go to the gym and work out?”

“Um… its almost midnight. I’ve been up since three o’clock this morning.”

“Great, nothing beats a good workout.  I’ll tell Marc we are ready to go. I wonder what kind of equipment they have. How much can you bench?”

Marc drove us to our hotel and we worked out until one. We got lost on the way back to our rooms. We couldn’t find anyone to show us the way, which was probably good; two sweaty, disoriented autistics on the verge of a meltdown would have likely frightened the other guests.  It was nearly two o’clock when I finally climbed into bed. Kat was upset, as I had suspected, but I was too exhausted to talk about it.

We woke up bright and early for the hackathon.  Though the previous day had been drizzly and overcast, California sunlight poured into the room, split into warm shafts by the venetian blinds. I was filled with happy-go-lucky autistic enthusiasm. Despite many hours of research, I still didn’t quite understand what a hackathon was. I was about to find out.

To be continued…

Not Today: An Outsider in the Outfield

October 11, 2011 32 comments

John Scott Holman struggled with undiagnosed autism for nearly 25 years. His diagnosis has enabled him to embrace his individuality and move forward. He writes and speaks publicly about his life with autism, hoping to inspire greater understanding and acceptance. Visit his Facebook page here.

Sometimes I think my father is a bit autistic. His autistic tendencies are entirely too mild to warrant a diagnosis, but they are noticeable enough to irritate me, and I’m the genuine article! Like any certified aspie, my father’s entire world revolves around his special interest – baseball. I swear, that man has managed to turn every conversation of his adult life into a longwinded monologue about the great American past time…

“You know, Dad, I was reading about that AIDS epidemic in Africa…”

“Son, let me tell you something about AIDS. AIDS is a lot like professional baseball. You see, you don’t realize how physically taxing it is until you have experienced it yourself…”

Conversations like these make me more mindful of my own autistic behavior – I feel your pain, Mom! My obsessions are regarded as symptoms of a disorder, yet when my Dad carries on about baseball, no one thinks anything of it. What gives?!

The Holman family is a baseball dynasty. My father and uncle both played Major League Baseball and my kid brother is now enjoying minor league success. So what happened to me? Genetic research may or may not yield an explanation for my autism (my mother blames the enormous quantities of yogurt she consumed during her pregnancy). Either way, I’m not much of an athlete.

As a bouncy autistic kiddo, my father’s baseball career took me all across the country. Life moved with the urgency and lightning pace of an amphetamine bender. My mother carted me across the country, guided by the distant glow of stadium lights, chasing my father’s career to the next city, the next ball park, one more win, one more loss… Like wise men following a star, we hoped those lights would lead us to our salvation, or at least a place, any place, we might one day call home.

No wonder my father is still obsessed – baseball is a dream that never ends. Spectators are filled with admiration and nostalgia, as their heroes round the bases, chasing the dream all the way home.

Back then, I had no way of knowing that my life was unusual. I was simply along for the ride – I didn’t understand what all the fuss was about. I’d met few children outside of the insanity of professional sports. Didn’t all fathers wear crisp white uniforms and travel the country playing baseball for thousands of adoring fans? Didn’t all mothers frantically drag their children through airports and locker rooms?

My father recalls being interviewed for national television while standing on the field of the King Dome, struggling both to answer questions and prevent me from wiggling out of his arms. Cocky and playful as always, Ken Griffey Jr. sauntered up to us, snatching the microphone from the reporter. “So little buddy,” he said, grinning my way, “do you think the Mariners will win the game today?” He pushed the microphone into my face and awaited my response.

“Not today,” I sighed. “You won’t win today… so we should just go home.”

My poor father had no idea what to do with me. He often tried to persuade me to go out back and play a game of catch with him, but I was usually too busy watching “Fantasia” or “Alice in Wonderland” – Dad had good reason to suspect his five year-old boy was a homosexual pothead.

In elementary school, my father somehow managed to convince me to join a little league team. He came to regret it. I spent every game spinning around in the outfield, oblivious to the action in the infield. Balls often whizzed by me, thumping onto the grass, and rolling slowly towards my spinning body. “Scotty, you just lost us the game!”

“I did? Does that mean we can go home now?!”

I was no better at batting than I was in the outfield. I rarely swung the bat, and couldn’t seem to hang on to it when I did, hurling  it farther than most of my teammates could throw the ball. I may have hit a few nine year-old outfielders in the kneecaps. Once, and only once, I managed to get a hit. I heard a crack and watched the ball soar far into left field. Overjoyed, I turned and skipped back into the dugout… forgetting to run the bases.

When I was particularly uncooperative, my father would tell me that I was adopted from a pack of gypsies. “Akmed!” he would shout. “You do know your real name is Akmed Megelbgy, right? We changed it when we adopted you, but you’d better get used to Akmed again, ’cause I’m sending you straight back to those gypsies if you don’t let the cat out of the refrigerator!”

Was Dad right? Was I adopted from strange, rootless people? Sometimes I wonder… I’ve always felt out of step, and have spent my life searching for a place I might belong. I’ve searched among the privileged, the pious, the decadent, and the depraved. You know what I’ve discovered? We are all looking for the same thing.

Whether hunched over a keyboard writing humorous, self-deprecating blogs about autism, or sliding into home base, we are all searching for love and acceptance. My father now recognizes my passion as the same restless yearning that drove him to success. An electric urgency comes over him when he talks of baseball; he lights up from the inside. This is especially true when he speaks of his minor league career.

Scholarly and uncoordinated as I am, I connect with his stories of traveling the country in a bus crammed with excited and terrified kids, all of them united by a burning hunger to prove themselves.  His voice quivers with excitement when he tells these stories, and I know that I was not adopted from gypsies. I am truly my father’s son… we share the same passion.

We all want to earn our place in the sun – we all want to be valued. However, I’ve learned that you cannot buy your way home. Your true family does not need to be impressed; they love you for who you are, not who you once were or who you may one day be.

I was certainly not the son my father envisioned, and I’m sure a part of him mourned the loss of his dream child, but he never made me feel like a disappointment. He may not have understood me, but he embraced me nevertheless.

Dad still hasn’t figured me out, but that’s alright – he loves me. Occasionally, he will try to make sense of my behavior, but I’m quick to remind him that the effort is unnecessary. “You know son, autism is a lot like professional baseball…”

“Not today, Dad… Not today…”

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

In Their Own Words – I Want My Money Back

September 29, 2011 94 comments

John Scott Holman struggled with undiagnosed autism for nearly 25 years. His diagnosis has enabled him to embrace his individuality and move forward. He writes and speaks publicly about his life with autism, hoping to inspire greater understanding and acceptance. Visit his Facebook page here.

At the tender age of fifteen, I saw my first psychologist, a stern, elderly man who smelled like a second hand bookstore. His full, wiry beard, was speckled with white and gray, as if it had caught the contents of an overturned ashtray. It fell past his chest, disappearing beneath the edge of his massive, oak desk. I wondered if it reached his toes, and leaned forward awkwardly, hoping for a revealing glimpse.

“Young man,” he said, startling me. “Tell me why you’re here.”

“Do you shampoo that beard?” I asked.

“Excuse me…”

“You look like Charles Darwin.”

He leaned back and stared at me, mildly annoyed, as if I was a fly he had noticed swimming in his coffee. “Your family is concerned by you behavior. I believe…”

“I commend you, sir!” I interrupted. “The world is experiencing a shortage of truly magnificent facial hair; you’ve got the best beard I’ve seen all year! You know who else had a good beard? Sigmund Freud. Are you a Freudian psychologist?”

“Young man, let’s try to stay on topic.”

“Right, beards… Nobody could beat Tolstoy’s beard. Now that dude had a beard!”

“Young man!” he bellowed, startling me again.

“Humph… Young man,” I muttered. “Just ‘cause I can’t grow a big fancy beard…”

The psychologist lifted a notepad from his desk and began scribbling absentmindedly. “I’m afraid,” he said, “that you have a very serious case of Bipolar Disorder.”

“Huh? How do you know? I’ve only been here for five minutes!”

“Trust me; I’ve been around a long time.”

“But… I’ve never had a manic episode, and the DSM-IV clearly states…”

“You, my dear boy, are an upstart!” the psychologist fumed, a fat, blue vein trembling in his forehead.

“Ok, chill dude… I’m bipolar. Whatever you say… Beethoven was bipolar. I don’t think he had a beard though…”

For as long as I can remember, people have been trying to figure me out. Other parents told my mother and father that I was clearly lacking discipline. Teachers refused me an education unless I was prescribed enough Ritalin to keep the Rolling Stones touring for another century. Pastors believed I was possessed, and prepared to wipe my projectile vomit from the pews when I trotted into Sunday morning service.

Hyperactive, precocious, and more than a little odd, I was truly a handful. Snakes, snails, and puppy dog tails? If only my mother was so lucky. Someone must have littered my gene pool with pixie sticks, happy meals, mountain dew, and an Encyclopedia Britannica.

“There’s something wrong with him,” my mother would sob. “He’s allergic to people! He won’t sit still, he won’t listen, he’s always hurting himself, and he’s smarter than my whole graduating class put together!”

I treated other children like overgrown action figures, ordering them about, an infantile Cecil B. Demille directing a playground epic. “C’mon Tina, say that line again, and this time, say it with feeling! Put down the Polly Pocket and explain your character’s motivation!” Eventually, my peers developed their own interests, and I was left to wander the playground alone, thinking of Ghostbusters, Power Rangers, and… existential motifs in Russian literature.

“Scotty’s latest obsession,” was a phrase used regularly to describe the most current of my all encompassing interests. At twelve years-old, I had forgotten more randomly collected information than most people will learn in college. My obsessions gradually became less and less age appropriate as my focus narrowed; retired barbiturate and amphetamine combinations used as antidepressants in the 50s and 60s; sadomasochistic undertones in the cinema of Joseph von Sternberg; and the impact of synesthesia on the literature of Vladimir Nabokov; to name a select few.

I wasn’t interested in girls, or boys, for that matter. My parents bought me a Mustang for my sixteenth birthday – I drove it all of three times. I wore the same few outfits day after day. I was diagnosed with ADHD, Generalized Anxiety Disorder, Borderline Personality Disorder, Major Depressive Disorder, and, of course, Bipolar Disorder.

True, I was rather emotionally volatile, but this was greatly exacerbated by the constant chaos which engulfed my family. My father had played major league Baseball for the Seattle Mariners, and was absent for the majority of my childhood. As a result of his career, my family moved dozens of times before I was ten years-old. When I was twelve, my eight year-old brother fell 31 feet from a ski lift, nearly dying.  If that wasn’t enough, the routine MRI, which followed his accident, revealed a tumor in his brain. He  later underwent a dangerous surgery to have it removed. My adopted sister was diagnosed with leukemia at three years-old. My father required an open heart surgery to repair a leaking mitral valve.

Though thoroughly weary of hospitals, I was typically content to find a quiet corner of the waiting room and study Italian Neorealism – “Scott, your sister is dying, no one wants to hear about Federico Fellini!”

Psychiatrists pumped me full of every neuroleptic in the book (Adderall and Celexa, medications which I am now benefiting enormously from, were withheld because they are contraindicated in cases of Bipolar Disorder). I was as incoherent as Mel Gibson at happy hour, and experienced agonizing side-effects which led me to attempt suicide.

My sister died at ten years-old, after battling leukemia for seven years. I was holding her hand when she passed. I was fed up with life, convinced that I was a waste of oxygen in a cruel and meaningless world.

I began heavily abusing street drugs, playing intravenous Russian roulette with every pill and powder I could get my hands on. I would wake up on the cool linoleum of my bathroom floor cursing my indestructibility – I was still alive.

I spent time in mental hospitals and treatment centers. Luckily, my obsession with drugs had a shelf life, as all my obsessions do. I lost interest and moved on.

At 24 years-old, my girlfriend suggested that I might have Asperger Syndrome.

“Huh?”

“Scott,” she said, “you can recite every line of the movie Cabaret, yet you haven’t seen it since you were thirteen. You just listed every currently marketed benzodiazepine in alphabetical order, apparently for my entertainment.

“So…?”

“You’re a walking dictionary but you can’t remember your own address. Not only can you not drive, you can’t figure out which of the three cars parked in your driveway is mine. I think you should see a doctor.”

“I’ve seen them all.”

“Scott…”

“Ok… ok… Wait, I’m autistic? I want my money back…”

How did I manage to live a quarter of a century without being properly diagnosed. I’m autistic – duh!

Discovering my autism has been my saving grace. I will never forget the overwhelming emotions that poured over me when I first read about Asperger Syndrome in the DSM-IV. I’m not broken. I’m not bad. I’m just autistic and that is alright!  Since being formally diagnosed, I’ve come to understand and embrace myself for the remarkable person I am. In a few short months, I’ve become a prolific autistic writer, with a column appearing this week on wrongplanet.net, a potential contract with a publishing company, translations of my articles in Hebrew, public speaking engagements, and an opportunity to travel to San Francisco to help Alex Plank and crew film a documentary on Hacking Autism.

Somebody pinch me!

Even when I had given up on myself, God had a plan for my life. I now have the opportunity to use my gifts to spread awareness of autism spectrum disorders. If sharing my experiences spares other autistics from going through the pain of living undiagnosed, my struggles will not have been in vain.

My diagnosis has been my vindication and my inspiration. I want to shout it from the rooftops; “I’m autistic!”

Well, better late than never.

Seriously though, I want my money back…

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

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