Monday, August 26, 2013

Autism and Asperger's - points on a curve, or different conditions?







One of the most interesting ASD studies to emerge this year came out while I was in the midst of my Australian speaking tour.  Consequently, Im a bit late reporting on it, but better late than never.  The study is titled, The relationship of Asperger’s syndrome to autism: a preliminary EEG coherence study.  It’s brought to us by a team from Boston Children’s Hospital: Frank Duffy, Aditi Shankardass, Gloria B McAnulty, and Heidelise Als.

Popular media accounts say this research distinguishes Asperger’s from autism.  If that’s so, they raise the question:  Are Asperger’s and autism two distinct and separate conditions?

I’d like to discuss that very question in this article.  I’ll do so by explaining the methods behind the study, and what I think the findings mean.  The intrepid among you may want to see the original paper, which you can read here:


You may also want to read the principal author’s 2012 paper, A stable pattern of EEG spectral coherence distinguishes children with autism from neuro-typical controls - a large case control study.  It’s the foundation for the work discussed here.




What they did
In 2012, the researchers published a first paper (the second one cited above) in which they described analyzing EEG data from almost 1,000 children – half of whom had been diagnosed with autism and half who were NT.  That analysis was able to separate the autistic kids from the NT controls with an accuracy of more than 90%.  That in itself was striking.  But there’s more, as released in this newest paper . . .

They continued with an additional premise and a question: If our first study showed that EEG data can distinguish people on the autism spectrum from the NT population, could further EEG analysis separate people with Asperger’s from the general autism population?

To answer that question they re-evaluated the data for 430 autistic kids from their first study and compared it to fresh data for 26 kids with anAsperger diagnosis. That was compared to data for 554 neurotypical controls.  All kids in the study ranged from 2-12 years in age; recently diagnosed in the Harvard hospital system using current best practice methods.  None of the kids in the study had other disorders (epilepsy, for example) that would alter or confound EEG data collection.

To gather the data for analysis researchers placed 24 electrodes in a grid pattern on each subject’s head.  Those electrodes collected EEG waves for a minimum of 8 minutes while the kids sat there, awake. Having experienced this process myself I can say EEG collection is not painful or stressful; it’s just boring – sitting still for 10 minutes at a time. If you have every tried to get a five-year-old to sit still 10 minutes you know how challenging that must have been for researchers!

EEG uses electrical sensors to pick up millivolt-level signals generated on the surface (cortex) layers of the brain.  These signals are often described as “brain waves,” and indeed they are like waves in that they look sort of like a “side view” of the ocean surface, and they propagate over the whole brain, being strongest near their origin and weakest in the most distant neural areas. 

Most brain waves are in the frequency range of 1-20 cycles per second, or 1-20HZ (hertz).  A “cycle” is defined as one complete wave; from peak to trough and back up to peak again.  Just as the ocean has many complex wave patterns, the brain can have multiple waves laid over one another.  The different waves have distinct peak-to-trough periods (said another way, they have different frequencies) that overlay each other to make a complex interwoven pattern.

The waves we see on a monitor are formed from billions of tiny impulses from the constant firing of cortical neurons; the processes of neuronal activity never ends (except when our brain dies) though it does change insleep or unconsciousness.

This particular study looked at what’s called spectral coherence of those wave patterns across the brain.  Simply put, spectral coherence is a measure of how well connected two brain areas are.  Areas with high coherence will rise and fall at the same time to a particular wave pattern.  Areas with low coherence will rise and fall at different – even opposite – times. 

When that happens we can say those areas are decoupled from one another, or marching to the beat of different drummers.

We might draw an analogy with ocean waves, as we watch them in a harbor.   Waves in a coherent pattern reinforce each other, becoming smooth and strong.  Waves in an incoherent pattern are at odds, breaking and jagged.  Anyone who has stood at a pier or ridden a ferry and watched the water has seen these patterns of smooth rolling water contrasted with rough unsettled seas.

In this study, the researchers compared signals from those 24 sensors and did some very complex mathematical analysis to find patterns of coherence for waves at several different frequencies.  The mathematical technique they used is called discriminant function analysis (DFA.)

What did they find?
In their original 2012 study the researchers found that patterns of coherence could separate autistic people from NT controls with an accuracy of well over 90%.  When compared to the NT population, the autistic people had less coherence over short distances, but more coherence over long distances.  By way of explanation, the authors theorize that, “predominantly reduced short-distance coherences may indicate poor local network function. The increased long-distance coherences may represent compensatory processes or reduced neural pruning. The wide average spectral range of factor loadings may suggest over-damped neural networks.”

That was a very interesting discovery.

How about the comparison of Asperger people to the broader pool of people with autism?

Their first analysis (2012) sorted subjects into control or autism spectrum groups.  The newer analysis (2013) classified 25 of 26 patients with Asperger’s as belonging to the autism spectrum community. They said: “This indicates that subjects with Asperger’s are neurophysiologically closer to the autism spectrum population than to the neurotypical control population.”

Next, they dug into the differences between the Asperger people and the others on the spectrum.
Using discriminant function analysis, 24 out of 26 subjects with Asperger’s were separated from the general autism population.  Going in the other direction, the majority of the autism population scored different from the 26 Asperger subjects.  It’s worth noting that the general autism population in this study had not included people with an Asperger diagnosis.  Had the population been mixed this result would have been mixed too.

What was different between autism and Asperger people?
In their words, The pattern of coherence difference demonstrated that the Asperger population showed even more reduction of left lateral anterior-posterior coherence than the autism group. . . . the Asperger group had markedly increased left mid temporal to central parietal-occipital coherence. It is speculated that this increased left temporal connectivity may partially compensate for the language deficiency suggested by the first difference.

It is also proposed that the postulated compensation may not completely facilitate all aspects of normal language development, and may result in the several, readily identifiable, higher level differences of language use observed in subjects with Asperger’s such as excessive pedantic formality, verbosity, literal interpretation devoid of nuance and prosodic deficiency, to name a few.

This is very interesting, because it suggests a reason why the therapies that work for Asperger kids and kids with autism are so very different.  While the researchers still seem to think Asperger’s and autism look like two points on a spectrum, they suggest more study could answer the question:
At this point, current study results are consistent with Asperger’s forming one end of the autism spectrum population. . . . The small size of the tested Asperger population limits definitive determination of whether Asperger’s is a separate entity to autism. Study of a larger Asperger population is necessary to assess this important question in a more conclusive manner.

They also say, Inclusion of the Asperger sample with the overall autistic population did not result in a statistically significant [change] as would be seen if the ASD and ASP populations represented completely differing clinical entities.  That too suggests traditional autism and Asperger’s are two points on a curve.

What do I think, as a person on the spectrum?
First of all, I want to stress that these two studies are only looking at children.  One of the reasons the DSM5 work group combined the various autistic conditions under one heading was that conditions that look very different in childhood become indistinguishable in adults.  An EEG study of adults on the spectrum has yet to be done.  We don’t know the extent to which these differences persist into adulthood and through the lifespan. I hope a follow up adult study is done soon.

Second – and this is very important – the study does not suggest that Asperger’s is fundamentally different from other autisms.  Rather, it identifies subtle differences while finding the major differences that set people on the spectrum apart from the NT majority are present in both sets of people (the autism and Asperger groups.)  We already know autism affects people very differently, and this study may be highlighting a particular subgroup; other such groups may be identified in the future.  That could prove valuable by helping us understand how to help autistic individuals with differing needs.

Third – the study’s findings of less coherence over short distance, and greater coherence over long distances seems to tie in with the connectivity theories of Nancy Minshew and Marcel Just at CMU/Pitt.  That is fascinating to me.

Finally, in my opinion, this study reinforces the concept of a broad autism spectrum.  By identifying a biomarker (the EEG signatures) that separates Asperger kids from kids with traditional autism, it also points the way to a possible future where we develop and use an EEG test to separate kids with different “autisms” and deliver different optimized therapies to each group. 
If we can separate Asperger kids today we may also be able to separate other subgroups tomorrow.  

By doing so we may then develop better targeted interventions that help more precisely defined population subgroups.  That could be life changing.
We may also gain valuable insight from the extension of this study into the adult population.  Do we become “normalized” in some ways?  Do we merge or stay distinct?  No one knows.  I eagerly await the answers.

John Elder Robison

John Elder Robison is the author of Raising CubbyLook Me in the Eye, My Life with Asperger’s, and Be Different - adventures of a free range Aspergian. John’s books on life with autism are sold in ten languages in over 65 countries. He is a member of the Interagency Autism Coordinating Committee of the US Department of Health and Human Services, and he serves as an advisor to many autism related boards and foundations, both public and private.  The opinions expressed here are his own.

Sunday, August 25, 2013

When Bears come calling


What do you do, when a bear raids your yard?  As bear populations increase, and human sprawl takes more of their territory, more and more people will face this question.  How you answer it may be critical to your future health and well being.

Bears are not generally aggressive toward humans, but they will defend their cubs and their food.  Many human-bear encounters happen in yards when bears are eating human food.  An eating bear is a dangerous bear, if disturbed.  Keep that in mind.

In this image you can see a large black bear has knocked one of our feeders out of its tree.  Big as it is, this bear can climb incredibly well, and he’s able to knock down feeders even 7-8-10 feet off the ground.



In this next image, he’s looking at me as I interrupt his feeding. As you can see, he’s none to happy with my appearance.

A bear raids the feeder


What should a homeowner know, when this happens in his yard?  Either do nothing, or make noise from a safe location.

You should know that a bear can move way faster than a human.  If he wanted to, this bear could move fifty feet in little more than two seconds.  If a bear decides to attack, you won’t have much time to prepare.

Consequently, it’s not wise to walk outside to threaten him.  In this photo, I am safely above the bear, on a second floor deck. 

We have a bear bell and wind chimes here at Chez Robison.  A moment after this photo was taken, my wife Maripat rang them both.  The bear looked annoyed, and retreated to the edge of the woods.  However, he came back and returned to the feeder.  She rang them again.  With a look of disgust, he walked off. 

The Bear Bell


It was, to my mind, a good encounter.  Non one got hurt, and feeder was undamaged.  The brace it hung on . . . that’s another matter.

The bear departs


This bear wasn’t too hungry.  A hungrier bear might not have given up.  What then?  At our house, the backup for the bear bell is a Winchester .44 repeater.  However, I would not shoot a bear simply because he was raiding the feeders.  After all, we put the food out there for the animals (more specifically, the birds.)  How should he know he’s not included? 

If you have to chase a bear away, I suggest you make a lot of noise from a safe place, or drive a car in his direction. Do not walk toward him, even banging pots and pans.  You might not like his response.  Even if you have a gun, things can go bad quickly.  When I was 25, and shot handguns in competition, I could nail a bear like this with five shots in two seconds.  Today, at 55, I’d do well to hit him at all.  Best to leave the guns as a last resort.

That said, I will say some bears are remarkably gun savvy.  One time many years ago I awoke at dawn to the sound of dogs barking.  As soon as I cracked the front door the dogs scrambled inside.  Alerted, I picked up my 30-06 rifle and opened it again.  A hundred feet down the drive a large bear looked back at me.  As I watched, he began walking toward the house.  I stepped out, and raised the gun.  He stopped.   We stood there, watching one another.   After a moment, he started toward the house, slower.  I leveled the gun to shoot, and he stopped again.  Now I kept him dead in my sights. 

He looked back at me, and I at him.  Slowly, he turned and walked away. A few minutes later, with the woods quiet, I went back inside.  That bear, I thought, knows his weapons.  He never came back.

Good luck!
John

Saturday, August 17, 2013

Our Automotive Program is set to open . . .


Bentleys in the TCS Automotive shop area
The TCS Automotive space in the Robison Service complex



Programming a Lotus Seven in the Robison Service complex


I am really excited to see things coming together for our new school, which is officially named the TCS Automotive Program.   We will begin teaching the automotive trades to a lucky group of teenagers in just three short weeks. This will be one of the most unique special education facilities ever!

Our partners at Tri Country Schools have staffed the place with an experienced crew of teachers.  We’ve hired a vocational teacher with long experience in the auto shop, and he’s going to be backed up by a special ed teacher and school psychologist from Tri County.  Their facilities manager has worked with us to finish the space and turn an empty building into an inviting and functional school.

Every day, people stop by Robison Service to learn about the school.  Can I see it, they ask?  The idea of teaching the automotive trade to kids in a working automotive complex is praised be everyone.  “This is a great idea,” they exclaim! 

What will it be like for students in our automotive program?  That’s one of the questions visitors always ask.  Here are a few of my thoughts on that.  I’ll be very interested to hear what readers think.

First of all, students will divide their time between the vocational classrooms – here at the Robison Service complex -  and traditional academic classrooms at the existing Tri County School. A school van will shuttle them back and forth.

When students arrive at the vocational program they will be greeted by a shop full of cars, and a small teaching and support staff.  From the beginning, we will strive to make our students feel like they are part of a real working service department.

They will learn in an environment that’s virtually identical to a working shop; indeed the space served that purpose for many years before we made it into a school.

We have thirty-two double deep bays in our complex.  Three of them are now dedicated to the school.  That means our students will do most of their learning in a dedicated space. But like medical students, they will have weekly Grand Rounds, where they tour the whole complex and see what’s going on in the other service bays.  That will give their classroom work meaning and significance.  As they learn to service transmissions on the school workbenches they will see their older peers fixing similar transmissions for paying customers in the adjacent garage spaces.

I will not be teaching any classes, but I will be an ever-visible part of the school.  I’ll be available to talk to students, and I hope my own life in the trades will inspire them to feel good about following a similar path.   

We are prepared to teach all aspects of the car service trade, including safety practices, cleaning and detailing, vehicle inspection, maintenance, and doing basic repairs.  We will also teach our students how to use standard auto shop software to look up and order parts, investigate repair procedures, and write up work orders.  Finally, we will teach our students how to care for the shop itself – caring for tools, taking care of customer vehicles, and keeping the shop itself clean and in good order.

Those are all key skills that will be needed when our students enter the real world.

I hope we will be able to get grants to support placing many of our students in the complex as apprentices.  That would allow them to get their first work experience in a safe, supportive environment.  I also expect to form alliances with other local auto service departments so we can have more supportive shops in which to place our students.

I expect most students will enter our program at age 15 or 16.  Because we are a special education facility we have the ability to keep students longer than a traditional high school.  In Massachusetts, special ed students can remain in high school through their 21st year.  If a student has challenges (as I did) that gives a greater chance of graduation and success.

One of our goals will be to graduate students with solid credentials for employment. A high school diploma alone isn’t enough.  We hope to see most graduates leave us with Massachusetts state inspector’s licenses and their first-level ASE certification tests passed.  ASE is the standard credentialing organization in the auto trade, and they have many levels of certification.  When our students graduate we hope to have them solidly placed for the climb up the ASE ladder; all the way to Master Technician.

Those skills and credentials should make our graduates quite competitive when entering the auto service workforce, but we also want to have a path for those who want to learn more.  For that, we plan to form alliances with the technical college system so that our graduates will have the choice of continuing on for an Associate’s in Auto Technology and qualification as a more skilled technician or even as a service advisor.

Students who graduate from the state’s two-year programs with GPAs above 2.5 have guaranteed admission to state university, and those with GPAs above 3.0 have tuition waivers.  So the road is open as far as our graduates want to travel, but at each step they will be well qualified for a respectable job that will pay a living wage.

I’ll write more on this later.

Until then, I await your thoughts . . .

John


Thursday, August 15, 2013

New Pre and Post Doctoral Fellowships for Autism Researchers

Researchers from Anglicare discuss their newest study at APAC 2013 in Adelaide, Australia


Are you interested in making a career in autism science?  Whether you are looking to develop new teaching techniques, new behavioral therapies, or you want to work in medicine or basic biology these fellowships could provide essential support.   If you are committed to the field, are enrolled in a recognized graduate program (or have a postdoc opportunity), have solid mentors and a vision of what you'd like to do I encourage you to apply.

The links below detail the programs more fully.  One is due October 2nd, the other November 13th, so time is of the essence.

The acceptance rate for these awards is pretty high because they are not well known.

Good luck!



MEIXNER POSTDOCTORAL FELLOWSHIPS IN TRANSLATIONAL RESEARCH:
The estate of Charles Meixner has generously funded the Autism Speaks' Translational Research Initiative with the goal of advancing delivery of products and services that improve life for those with autism. An initial distribution of $1.75 million will support postdoctoral fellowships in translational research, continuing an exciting and successful program that began in 2011. More information about this generous gift is available here.

Autism Speaks is pleased to announce the open application period for the newly named Meixner Postdoctoral Fellowships in Translational Research. This newly named fellowship is designed to support well-qualified postdoctoral scientists in pursuing training and research in the field of translational autism science. Successful applicants will detail a project that bridges basic laboratory research and behavioral or biomedical clinical research, and a training plan that includes significant mentoring in both basic and clinical research environments. Projects must have the fundamental translational research aim of accelerating the conversion of basic scientific discoveries into novel and more effective methods or products used to diagnose, prevent, or treat ASD.

Access the full RFA for the Meixner Postdoctoral Fellowship on the Open Grants Webpage HERE. (deadlines are in the table at the bottom of the page)

DENNIS WEATHERSTONE PREDOCTORAL FELLOWSHIPS:
Autism Speaks is pleased to announce the sixth year of the Dennis Weatherstone Predoctoral Fellowships. We invite applications from predoctoral students who aim to pursue careers in autism research. The Fellows will work with mentors who are leading scientists in autism research. This program supports the growth of a promising new group of young scientists who have made autism-related research their chosen field. In order to facilitate a network of collaboration and exchange of ideas, the Weatherstone program includes group interaction among the class of fellows and an annual meeting with the Weatherstone family and the Stavros Niarchos Foundation. Find more information on the Weatherstone program here.

Access the full RFA for the Weatherstone Predoctoral Fellowships on the Open Grants Webpage - HERE. (deadlines are in the table at the bottom of the page)

In addition, the Autism Science Foundation is offering a variety of grants which you can read about here.  The scope of eligibility for their grants is broader.  They are due November 15.

Monday, August 12, 2013

A Different Perspective - A Shared Story - the 2013 National Biography Award lecture

Above: RAISING CUBBY on sale at the Dymocks Literary Lunch, Sydney, Australia, 7 August 2013

This August, I had the great honor of delivering Australia's National Biography Award Lecture at the State Library of New South Wales in Sydney.  Most of my talks are about autism, but this one was about memoir - why we write it; and what it means.  Writing the lecture was a unique assignment.

The Biography Lecture is one of a series of events that happens in conjunction with the delivery of the Award, which this year went to Peter Fitzpatrick for The Two Frank Things.

Read more about the award here

For those who are curious, I've posted the script for the talk below:


John Elder Robison - National Biography Award Lecture
Library of New South Wales, Sydney, Australia
8 August, 2013

Some authors write for money, grinding out words to earn a day’s pay.  Some spend a career at a newspaper or magazine; others write for publishers or manufacturers.  Then there are the people who write to entertain. Some people write for the beauty of creation.  They are our masters of literature, and we admire their works.  Some people become fascinated by a particular person or place, and they become biographers, historians, or narrative storytellers. 

A few people become so important or so famous that they write their life stories in the belief that we should want to know where they grew up, and what they did before they became governor or president or field marshal or whatever they did to become famous.  That’s autobiography.

Then there are the people like me who have a message.  We write because we want to spread the word, whatever the word may be for us.  Many of us in the course of spreading that word write memoirs.  Few of us are famous; indeed most of us would be unknown if not for our books.

That highlights an important difference between memoir and autobiography.  Autobiography is the telling of the noteworthy life story.  Memoir is about certain defining events in a life, what they meant to the author, and by inference, what they may mean to the reader.

One can be a successful biographer without exposing much of one’s inner self to the reading public.  Memoirists, by nature, are precisely the opposite.  The power of memoir comes from self-exposition, and how readers relate to our thoughts.

Some of the most powerful works of memoir have a strong moral or spiritual component; the writer was challenged in some elemental way and prevailed (or not.)  While some memoirists write primarily to entertain, many write of adversity, and how it’s faced and overcome.  The adversity comes in many forms discrimination: addiction, incarceration, abuse or adventure.  I believe it is this battle against adversity that makes those works so compelling.

As a memoirist myself, I might also add that memoir is by its nature more passionate than autobiography.  For that reason, a work of memoir has more opportunity to stimulate and inspire, hopefully in a good way.  As great as many of the histories of World War Two were, the most powerful and transformative stories were the memoirs, like the Diary of Anne Frank or Man’s Search for Meaning. It’s been over sixty years since those books were written and they are still taught in schools.

In my case, the adversity came in the form of a neurological difference - a form of autism called Asperger’s Syndrome.  When I wrote my first book, the condition was relatively unknown to the general public, due to its relatively recent recognition by the medical and psychiatric communities.

Today, awareness of autism and Asperger’s is everywhere and to a large extent that is a result of memoirists.  I’m proud to be one of them but there are thousands more – both writers who placed books in print and the newest breed of memoirists – those who write online in blogs and e-books.

If you doubt for a moment the power of that writing, just look back at history and look at us now.  Fifty years ago autistic people – including those of us with Asperger’s – were hidden in basements and attics. Today we stand proud, and our children will surpass us thanks to the services we now receive in school and elsewhere. And all of that came about thanks to awareness, which in turn came from those who wrote and spoke out.

Truly, this is an example of memoirists changing the world.

I was born with what many would call a significant disability, though the nature of my disability rendered it invisible to casual observers. I was unable to read or understand the nonverbal cues of other people.  My inability to discern the feelings of others meant that I was very slow to develop what psychologists call theory of mind - the realization that the individuals around me have their own thoughts and feelings, independent of my own.

Hearing that, you might wonder how I could possibly grow up to write a memoir, and why I’d care to do so.  Those are good questions. 

Growing up different in the sixties, and making my way as an outsider, I was forever saying and doing the wrong thing, and I was always in trouble with other kids, grownups, and my teachers.  In the absence of any better explanation, I believed what people said at the time – I was defective. 

Today, an alert parent, teacher, or doctor might see the signs of autism in a kid like me.  But my story began in the 1950s, and no one recognized the kind of autism I had. The only form of autism recognized at that time was characterized by an inability to talk and other obvious signs of disability. The result – a series of strait F’s in school, and a lot of trouble.

I couldn’t finish school, and I needed a job.  I loved music and electronics, so I taught myself to be an audio engineer, and joined a band. I was just 16 at the time – too young to work in a bar - but I said I was 21 and my knowledge carried the day. At that point having just dropped out of school most of the adults in my life saw me as a failure.  But things were about to change.

My mother had introduced me to the engineering professors at our local university, where the grad students embraced me like a long-lost friend.  I didn’t know it at the time, but I’d found my first community of like-minded people. 

The knowledge I gained in their lab, and on my own – reading and experimenting – was what allowed me to venture into the world and earn a living.  As a high school dropout I could not do that in the conventional way, but I did ok just the same.

The band I’d joined put me in charge of repairing and setting up their instruments and electronics.  I augmented that work by fixing and modifying gear for other musicians.  In a matter of months I had more work than I could handle and my years as a failure in school began fading from my mind.  
One band led to another, and my autism turned from disability to gift as it allowed me to stay focused very deeply on music and electronics. I became the engineer for Britannia Row - Pink Floyd’s American sound company, and from there I became the engineer who designed all KISS’s fire breathing, light blasting, and rocket launching musical instruments in their glory years of the 70s.

Unfortunately, despite the gifts it brought, autism also had a disabling hold on me, and I was totally unaware of its presence.  My inability to read other people led me to conclude I was a failure, even though people actually believed the opposite.  I assumed I had no friends while unbeknownst to me - others felt I wanted nothing to do with them.

It was a bad situation, one I was completely oblivious to at the time.  It led to the unraveling of my first career.  But I wasn’t a quitter.  I saw a recruitment ad for a digital engineer at a toy and game company, but I was an analog guy.  But how hard can it be to change, I told myself.  I spent a week at the university library, sold myself as a digital sound engineer, and never turned back.  I joined the company just as electronic sound effects, speech synthesis and speech recognition were about to revolutionize consumer products.  The games I worked on were some of the biggest hits in the industry but my autism prevented me from grasping my own achievements. I still believed I was a failure and quit that job too.

Yet, I couldn’t give up.  I’d found a girlfriend, and we’d gotten married. I had to be responsible! So I took a big step, and started a business of my own.  I began fixing cars in the driveway of my house.  There was no boss; I worked alone.  I was answerable to my customers, of course, but they were more concerned with results than with my bedside manner.

Indeed, that is how it is for many who work in the trades.  You don’t give much thought to the intellectual capacity of your plumber when the toilet clogs up.  You just want the thing to flush.

Just as my business got going, I got a son.  Wonderful as that was, as I carried him home from the Kid Store, I was filled with fear for my ability to keep our little family going.  Would I fail once again?

I didn’t. My business grew and prospered.  I hired one mechanic to help me, then two, then three.  I didn’t have the same insecurity about what people thought about me because I was the owner.  Even if they didn’t like me, they didn’t have the power to throw me out. 

Gradually, with my success, and the experience of being a parent I began to relax more around people.  That was when my life was turned on end.  I’d gotten to know the customers who patronized my company, and one turned out to be a therapist.  One day he brought me Australian psychologist Tony Attwood’s book Asperger Syndrome.   This is a new condition psychologists are talking about, he said, and you could be the poster child for it!

I was shocked at first but as I turned the pages, I saw he was right.  For the first time in my life, I had an explanation for my social failures.
The knowledge of Asperger’s transformed my life, in more ways than I can count.  The realization that I was not defective just different totally changed how I saw the world.  The idea that people wanted to be my friend was just magical.

As my understanding of my difference grew, my ability to engage people blossomed. For the first time, I developed a social life.  My business became more successful.  I was on a good path.

That was when I realized I needed to do something to help other people.  Until that moment I was the one who needed help. Now, thanks to the power of knowledge, I knew why I had failed as a kid and young adult.  I was sure other people were on the same track today, and I felt driven to help them avoid my own mistakes of ignorance.

For indeed that’s what they were.  I began looking for people to talk to about my newfound insights.

I had no idea at the time, but that was the first step to my becoming a memoirist.

I started volunteering at shelters and homes for youth with autism and other challenges.  I spoke to the kids from my heart, telling them of my own loneliness and fear, how knowledge of my difference had melted the disability and brought me success.  My words touched the kids, but to my surprise they also touched the adult leaders, sometimes even more so, as they affirmed when speaking to me after my talks. 

I talked about my life, and I answered their questions.  Many times, I brought a fine car from my company, and let the kids come outside and see and touch it.  I felt good about what I was doing, but I wanted more.  I wanted to reach a wider audience, so I headed to jail.  There, I spoke about my experience as a child who grew up in an abusive home, dropped out of school, and still went on to make a decent and legal living.  I also talked about difference, and how it felt to be bullied and called names.   To my shock and amazement, hard men with arms full of tattoos stood up and cried, saying they hated themselves for what they’d done, and what others had done to them.  My words seemed to touch something deep inside, and I wondered how broad the audience for my stories might be.

If I’d found a common emotional thread connecting teachers, doctors, wayward teens, country lawyers, outlaw bikers and all sorts of seemingly ordinary people . . . might the thread reach to everyone?

That’s when I decided to write a book.

There was precedent for that in my family already.  My brother had written a few books, beginning with Sellevision, a comedy about a fictitious television shopping network.  I sold that book in the waiting room of my car company.  People would ask why we had the books on the counter, and the receptionist would say, “thats Johns younger brother,” and they bought one copy after another.

I assumed they were being polite.  I had no idea if they liked his books, but I sold them as a loyal brother.  Then he wrote Running With Scissors - a shocking tale of our depraved and dysfunctional childhood.   I’d never talked about growing up with my car company customers, though I had shared some details with guys in jail and the kids in the homes.

I put those books out for sale too, and people continued to buy them.  Every time we rang up a sale I wondered if that person would ever speak to me again, after reading about our horrible upbringing.  I was 45 years old, and still ashamed of my childhood.

But that didn’t happen.  Instead people came back and told me how my brother’s story and by extension my own had inspired them.

It was really that experience that gave me the courage to tell my own story.  If my brother had not paved the way I doubt I would have ever overcome the shame of my childhood to share what really happened as I grew up.  As much as I wanted to help others, that shame would have held me back. 
The response to my brothers writing showed me for the first time how my perception of what people thought was totally off base.  You’ve heard me tell you how I misunderstood how people felt about me before, and how that hurt my success in life.  This was the first time that happened, when I recognized it at the time. All the prior times I had changed the course of my life while remaining ignorant of my wrong interpretations.  My experiences following the release of Running With Scissors marked the beginning of my awareness of just how wrong my understanding of other peoples’ thoughts really was.

That was a transformative moment for me, and it also filled me with sense that I needed to share that insight with the world.  I continued speaking every chance I got and I joined online communities to talk about growing out of disability.

I had become a storyteller but I was not yet an author.

Then my father got sick.  The moment I arrived at the hospital, I realized this was not like all the other times.  He wasn’t going to get better.

I didn’t know what to do.  So every night, when I came home from the hospital, I wrote.  By the time he died my anguished musings had taken up 10,000 words, and I shared them with my brother and the rest of my family.  My brother put it on his website, and national public radio picked it up.
People read that story, and as sad as it was, they claimed it made them feel better. Or so they said. I still couldn’t tell, but I knew enough to believe what they said when they said it often enough.

When’s the book coming out, they asked?  Of course, there was no book.  Not yet.

I had no training in writing; I was a ninth grade dropout.  Yet I was certainly an educated person.  My command of spoken language was impeccable and my reading skills had been honed for forty-some years – ever since I decided to read the Britannica in third grade.  I may have been a dropout from school but my parents were both professors and I had the great fortune to live in a college town where any learning resource I wanted was there for the taking.

So I was unschooled – or unsuccessfully schooled – but I was certainly educated.

Still, I lacked confidence.  How will I tell readers about Aspergers?  I’m no doctor or psychiatrist!  I’m nothing.  How will I do it? 

I asked my brother what to do.  He’s eight years younger than me, and at that time he was already on his fourth book. 

 “Just write down the crazy stories you used to tell me as a kid, and everyone will see what’s wrong with you.”  That’s what my brother told me, and that’s what I did.  I wrote a collection of short stories about being on the road with different bands, growing up, and working at Milton Bradley.  In about three months my book was finished.  I sent it to my brother’s agent.
His rejection letter was not long in coming. 

“This is a fine collection of short stories’, he wrote, “but it’s not a memoir.  A memoir has a narrative arc, and builds to some conclusion and resolution.  These stories don’t do that.  They are just stories.”

I was devastated.  It took me three more months to return to the manuscript, and when I did, I understood what he had been saying. It was just disjointed stories.  It had no logical progression; no beginning and no end except the physical opens and closing pages themselves. Most importantly, my book was missing the vital message in my mind: illumination of the arc from disabled child to crazy but successful rock and roller to respectable adult and family man.  Finally, it was missing the challenge. 

Writing about that was the hardest part.  Remembering the other kids laughing at me and calling me names.   Remembering my drunken father burning my little brother’s forehead with a cigarette.  Remembering how it felt to live in the woods, like an animal, because there was no safe home to return to.  That was what I hadn’t written, but it was the necessary counterpoint to my later success.  Indeed, it explained why I was and remain so driven.

So I set out to rewrite the manuscript.  For that’s what it really was at the time.  A manuscript only becomes a book when it’s published.
First I arranged the stories in order.  Having done that, I filled any holes I saw.  Just as I could concentrate and focus on music and electronic, and later cars, I turned my focus to recalling, recounting, and most importantly - interpreting the details of my life.

Finally I got to the end. I’d left my hometown as a loser, and returned as a winner. I closed the book with the story of my father because it was the thing that really got me moving.

When I sent the book back to my brother’s agent, he was stunned.  He never thought he would hear from me again.  He sent the manuscript to editors, and every big house wanted to publish that book. 

Look Me in the Eye was released September 25, 2007 and was an instant success.  It was a hit in Canada, America, and also in Europe, Asia, and South America. Here in Australia it sat on the Random House bestseller list for six solid months.

I was shocked.  I pondered the reasons for my success, and wondered what to do next.  Having told “my story,” was that the end?  I realized there were many stories yet to tell, as well as stories yet to be lived and experienced.  A lifetime is more than 95,000 words.

I pondered what to write next.  As it happened, my next book was not a memoir, but it used the memoirist skills I’d developed.  I had hoped Look Me in the Eye would give hope to others growing up with autism, but I never imagined it would become the defining account of the condition that it rapidly became.  As such, it was full of holes, and readers with Asperger’s and their families were quick to point them out.

How did you get a job?  How did you get a girlfriend?  How do you wear scratchy wool sweaters?   There were a thousand things people wanted to know, most all relating to autism or Asperger’s.

Be Different – the yellow book with the trains on the cover - addressed those questions through the same storytelling style, but it was more a prescriptive book than a memoir.  It too was successful.

Unfortunately, the success of that book was overshadowed by another event in my life:  My son had become a teenager, and like me, he has Asperger’s with all its attendant eccentricities.  Where I’d developed a special interest in electronics, his interest was in chemistry and explosives.  Unfortunately, he drew the wrong kind of attention to himself in this post 9-11 era by posting video of his experiments online.  He was raided by the police, and prosecuted for imaginary crimes he never committed.  The struggle to save him from a lengthy prison term took over my life.

My latest book, Raising Cubby, tells that story, but it’s far more than the simple account of a trial.  I am also telling my, and my son's stories – a fun and unique tale of parenting where both dad and kid are kind of different.  It’s a cautionary, but inspirational tale of how we both grew up together, had adventures, had fun, and finally, how he discovered chemistry and got in trouble ….

To learn what happened next, you’ll have to read the book.

In autobiography people may try to present the best version of themselves to others.  I can’t always do that, because I can’t really tell what people think of me, even now.  People have described my writing with words like “brutally honest” but perhaps it’s simply that I’m autistic and know no other way to be or speak.

I hope that a willingness to share my failures and imperfections encourages others that they too can overcome adversity.

I knew writing my story had been good for me.  It helped heal the pain of my father’s death, and it gave me many new insights into others and myself.  The process of asking, why did I do that? was very revealing.  I realized I’d never examined the “why” behind many of my thoughts or actions before. 
Once my manuscript was sold to a publisher (Random House in America, Australia and New Zealand; other houses elsewhere in the world,) the process of editing it for publication began.  That turned out to be a massive collaboration, with my editor and I going over every single word on each and every page.  It felt as if the book was rewritten beginning to end, though a comparison shows 93.9% of the final content was present in the original submission, in one form or another.

The process of book editing gave me many additional insights into myself and more important - Aspergian thinking. When we edited the book, Rachel Klayman, my editor – who is not Aspergian - read every word and sent me careful notes about every little detail. When she saw things differently from what I’d intended her reactions revealed how other peoples perceptions (in the person of her) differed from my own.

Rachel’s notes covered a wide range of things:

“I don’t think a person would actually say that” she would write. . . and yet, I did and do say it that way. The fact that she picked it up, though, gave me pause to think . . . what do other people make of me when I say things like that in the course of conversation?

“Why do you say this” . . . To me, the answer was obvious. Once again, I realized that she had pointed out a conversational “error of omission” that I make all the time, without even noticing. And she pointed out MANY such examples.

In many cases, she changed the order of whole paragraphs, and I saw that the revised order seemed more correct, and yet, the original order seemed right when I wrote it. Do I think in a different order from her? Maybe so. Her detailed comments showed me how different my mind is in some ways, and how very much alike it is in others.

She’d circle lines with little notes . . . “this is really funny” . . . “this is poignant” . . . “I like this a lot.” I would look at those little comments and think, Hmm . . . it is?

You see, I never knew exactly what was funny or sad or entertaining in my stories. I’ve always known people like to hear me tell stories, but I never got a word-by-word explanation of why. When I read my words, they are flat to me. I don’t read something in my book and say, that’s funny! But now that I know what she sees as funny – and she’s a professional with years of evaluating such things for the public eye – I can analyze her comments and make my new writing funnier, sad, or whatever I want.

Prior to writing and then editing Look Me in the Eye, all my interaction with people was through conversation or letters. Like everyone, I made many mistakes when choosing and forming my words. Listeners and readers thought I was rude, a jerk, inconsiderate, and a whole host of other nasty things. And I never really knew why. Once I knew about Asperger’s, I knew WHY in a general sense, but I still made mistakes. The process of book editing has been like a concentrated course in how to talk and write so that won’t happen.

Rachel’s back and forth notes and word-by-word highlighting of my writing has given me a unique window into my thought process, one that's written and I can now refer back to.

Today, I recognize the power of self -reflection but I do not know how to teach it to young people. Is there a process like book editing that a young Aspergian could be exposed to for purpose of self- discovery? I don't know . . . perhaps the idea leads to a new concept in special Ed teaching.  I am just in the process of opening a school for teens with Asperger’s and other challenges back at my car company campus in America, so maybe I’ll have a chance to find out . . .

As I suggested at the beginning of my talk, reasoned presentations can inform and educate, but passionate argument is what has the power to inflame others, and by doing so, change the world.

Religious leaders know this.  Politicians know this.  And in the world of writing, it is memoir that does that best.

That, to me, is the value of life story writing.  To inspire others to be the best they can, by building on the insights memoirists share.

My father was a minister when I was born, and I come from a long line of Anglican clergy.  That said, I’ve never been a religious fellow myself, but my storytelling has allowed me to touch people in that same way, and perhaps become the equal of those who came before me.

Thank you so much for inviting me to Australia to deliver this talk.  It’s a great honor and one I will always remember.

John Elder Robison
(Questions from audience)