We have made things simple by making a questionnaire for you to fill out and email back to us.

Please include in your email with the questionnaire a photo of you and your loved one affected by autism (or just you) that is at least 500KB in size.

Here’s the questionnaire:

–Please feel free to change Name and locations if you so desire (please keep all ages accurate and answer only the questions you feel comfortable answering –

Given Name:
State or Province:
Relationship to individual with autism:
Individual with autism’s given name:
Age at diagnosis:
How did you feel when they were first diagnosed?

What questions did you have, and where did you go to find the answers?

How did the diagnosis affect your family?

What were/are the hardest parts of accepting the diagnosis?

What have been some of the struggles your relative with autism has had to overcome/is dealing with?

What have been some of the big successes you have experiences in regards to autism?

Are you open to being contacted in regards to the treatments/therapies/products you mentioned above?

What would you like people who don’t have a relative with autism to know/understand?

What autism treatments/therapies have you tried? What were the results of each treatment/therapy?

Do you have any humorous stories from your experience with autism? Please share one or two.

Please email your answers to this questionnaire to adam@adventureforautism.com

Thank you for taking the time to help us put a face to autism.
-The AfA team

Cycle Pan-America is a 14,000 mile journey from the Southern tip of Argentina to Alaska. The current World Record for this journey is 125 days – Adam Biel will cycle it in 100. Cycle Pan-America has set the goal of raising $1,000,000 for autism as well as drumming up support and awareness for autism around the Western Hemisphere.

Saturday, Sept. 10, marked the launch of Cycle Pan-America’s promo tour. To launch the tour Adam cycled for 24 hours and completed 458 km or 285 miles. Adam ended his 24 hour cycle-a-thon in front of a cheering crowd of nearly 2,500 people at the Walk Now for Autism Speaks in Edmonton’s Rundle Park.

After over a year and a half of planning Cycle Pan-America we are incredibly excited to launch the promo tour! Cycle Pan-America is the biggest fundraiser of its kind ever done and we’re proud to officially announce that Cycle Pan-America has partnered with Preston Marcus.

Cycle Pan-America will operate in partial conjunction with Adventure for Autism and will rely on AfA to host initial updates on Cycle Pan-America until www.CyclePanAmerica.com is officially launches it’s full website.

For now, please check out the Official Fan Page

Thanks,
AfA

Join Our Team

We at AfA are looking for three adventurous people to join our World Record Support Team!  Members of the team will be part of the most incredible journey in recent history.  The team will travel through 14 countries and 14 climate zones in 100 days as well as see some of the most beautiful natural areas in the Western Hemisphere.  The team is an integral part of the World Record and without this team Autism Speaks would be unable to raise several million dollars through the World Record.

Currently there are team spots open for a photographer, videographer, and multiple drivers.

The journey begins in February 2012 in Argentina and will end in late June 2012 in Alaska.

If you are interested in joining the team as a Photographer, Videographer or Driver please email our founder directly at adambiel@adventureforautism.com

Every applicant will be given consideration until the positions are filled. Please note, these are not paid positions.

-The AfA Team

Jairo is the individual I was fortunate enough to interview here in Nicaragua. He’s quite the character. As we sat down to film the interview in the courtyard of the school he attends I didn’t know what direction our interview would take. Actually, I never know what direction any interview will take, but interviewing someone with autism amplifies my sense of not knowing.

Our interview started like any other interview I film:
Name: Jairo. Check.
Location: San Juan del Sur, Nicaragua. Check!
Tell me about yourself…

This is where things get interesting. I asked Jairo a bunch of questions, having already talked with him about what we’d talk about before the interview started. Before I know it he goes on a tangent – simply naming places that he’s been that I haven’t. After about 3 minutes of him listing places, in order by distance from San Juan del Sur he finally pauses, looks up at me and asks if he did a good job.

I manage to get him to briefly mention the things that he does at Los Pipitos before I turn the camera off, but I can clearly tell he’s itching to get back inside and work on his piñata that he didn’t finish the day before. He then said one last farewell to the camera and the interview was over. It was short and sweet.

Jairo wasn’t the only one at Los Pipitos with autism though. There was young boy named who has autism and Cerebral Palsy.

Like Jairo, this boy, who will remain namelss, recieves the support of the local “Los Pipitos” center, however, this support is not nearly enough to actually improve their condition at all. The young boy with multiple conditions, for instance, spends most of his day being told to write his name in his notebook – a task that, after a brief glance through his notebook, has never been accomplished, and that seems to be the extent of the education he receives. They do however, have spend part of the day making art as well, but there is no case specific therapy. In fact, the woman who runs the center didn’t even know what autism was, and hadn’t heard of it. Her primary focus is to get the kids/adults who show up at the center to make Piñatas to sell a the market on Fridays and getting the ones who can write to transcribe sentences, even though they don’t know what the words mean most of the time.

The center is a step in the right direction, but much more training and support is needed. Especially since one center, with a single staff member, has a “class” of individuals with autism, cerebral palsy, Down syndrome and some who are deaf and mute. I imagine working there has to be difficult and being having only one staff member is probably why it is more of an adult daycare than a center for treatment or the improvement of the human condition.

Still, it saddens me that the woman in charge of the facility didn’t know what autism is.

I told myself to remain calm as the knife scraped against the soft flesh of my neck. Revoking the urge to squirm I reminded myself, “You’re paying for this – he’s a professional – its okay.”

I was getting a straight razor shave.

The steady hand against my neck was that of my 74-year old barber, who’s been giving shaves to travelers and locals alike for over 22 years. He’s shaved more this year than I have in my life. Quite impressive since I started shaving in 5th grade and it is only the end of March.

I’ve realized in my travels that everyone has a “vice”. Some travelers can’t help but drink their favorite type of alcohol, go for massages, manicures, pedicures, steak dinners or one of any other countless things that travelers will go well out of their way to find. I have a vice, its straight-razor shaves.

There is a strange thrill when receiving a shave like this. It’s a culmination of emotions. The thrill is in sitting in a chair in a strange country and letting someone you don’t know put a knife to your throat. Laying back, being unable to see what they are doing. Then, there’s the sting of the alcohol as they bathe your face in a manner bordering on a massage – it stings at first. A pungent aroma fills your nostrils in a way that nearly burns as the facial rub dances lightly along the border of pleasure and pain.

In the chair of a well practiced barber the world slips away and your entire existence is taken up in the sensory overload of the shave. Only the sense of taste is not engaged (but if you bring a mint you can engage all your senses).
The essence of the shave is captured in the scent of the pre-shave wash, the sound of the hair follicles being sliced through by a sturdy blade and the wipe of the blade after each stroke. It’s the feeling of the blade as it glides across your face, maneuvered deftly between fingers that simultaneously swipe the blade and ply your skin into better position. It’s the sound of the solitary fan above, the creak of the chair, and the slight slapping sound as the barber lathers your soon-to-disappear facial hair. It’s the focus you see in the eyes of your barber, the blade in the hand that is too close to your face to focus. It’s magic. Well, it’s magic for me anyways.

My latest barber, Juan, the aforementioned 74-year-old, gave me a great experience. His hands belied his age while his boney arms told tale of muscle that made him a once formidable man. There was the distinct glint of joy in his eye as he ran the blade across my face and his blue eyes flecked with gold gleamed as pristinely as the white stone rosary hanging from his aged neck. He smiled as he focused intently on my shave and his work was as good, if not better, than any straight-razor shave I’ve had before.

It was quite a wonderful way to end a morning.

This is a picture of my latest barber.

For those of you who don’t know what I’m doing on the road right now I’ll explain it briefly for you.

Right now I’m sitting on a beach on Isla Ometepe in Nicaragua (It’s my weekend). I’m back on the road with two goals in mind:

1. Preview the 2012 return route through Latin America, with the exception of Colombia.
2. Film the story of an individual affected by autism in each country I travel through with the exception of Honduras to edit together in June as a miniature documentary.

Those two goals being said, this journey is a lot of work. When I travel by bus along the highways south I have to constantly be aware in order to prepare myself mentally for the return trip. It is also a lot more difficult than you might imagine to find individuals/families willing to be filmed is tough. First there is the language barrier, which I am overcoming faster and faster everyday. Second, I have to FIND the families, which, here in Nicaragua, could be very difficult as the country has more pressing social and health concerns than autism, thus leaving autism undiagnosed here more than any other country. Even individuals in the Department of Education don’t know what autism is until it is described in detail to them – even then they aren’t sure if any cases exist in the country. However, walking around I’ve been able to see clearly that there are cases of autism just as common here as anywhere else.

Once an individual/family is found the next hurdle is getting them to be willing to speak in front of a camera. It’s easy to get people to speak, but once a camera is turned on the story changes and skirts the issue at hand – or even halts the person from speaking at all.

Travelling down here is also a bit of a curiosity. I pass hours standing in “chicken buses” (school buses converted to public transports) and miles and miles roll beneath the tires as countless people bump and grind past one another in the heat of the bus’ interior. The only escape from the cacophony of body odor is the breeze rushing through the windows carrying the smells of burning garbage, incredible cooking, and the local smells of agriculture.

I’ll be on the road for about 12 weeks in total, travelling through at least 9 countries and filming at least 9 interviews.

The journey will be strenuous and I’ll travel over 9,000 miles in total when I finally reach the southern tip of Argentina.

I’ll do my best to post a few of the un-subtitled interviews in the next two weeks.

-Adam

There are rooms devoted to teaching different age groups, a room devoted to the textures, sounds, and sights of the ocean and beach. They have areas for children to learn eye-hand coordination and the entire facility is designed for the children to be barefoot so they can experience the purposed floor textures in the different rooms.

When I walked into ASA, through the garage, which has a small display of ASA merchandise and sensory friendly items if parents choose to purchase them, I was immediately greeted by several young boys with autism. Being a stranger it took them several minutes to actually interact with me, but soon they were engaging with me in the same way neuro-typical children play with something that intrigues and scares them a the same time. I spoke with Ana, the head of the association, and she gave me a fantastic tour of the facility. In the areas that weren’t yet completed she spoke with the clarity and detail of someone who can clearly see the future – a future she will create. Ana is a visionary in for autism support in El Salvador.

As we stood in the small garden of the facility, cold drinks in hand, the tone of our conversation shifted and the weight of it increased. We were no longer talking of the wonderful facilities and the light at the end of the tunnel – we were talking about the state of the darkness in which even the most distant light appears bright. We were talking about the state of autism in El Salvador now. It seemed as soon as the camera was turned off that an ugly truth became revealed – the sort of truth you simply don’t want to admit is true. Like many other Latin American countries, autism is a highly mis-understood affliction in El Salvador. Many people with autism in villages and towns don’t experience the community of support I saw downstream from San Marcos Lempa. Instead of support many children are abused and neglected.
There are many reasons for this. Largely it is the result of lack of access to proper diagnosis.

In El Salvador it is difficult, if not costly, to receive a proper diagnosis for a condition such as autism. There are very few specialists in El Salvador capable of giving a diagnosis. Part of the mission of ASA is to provide free pre-diagnosis, which would be a consultation with a physiotherapist, a psychologist, a doctor/nurse, and possibly some other professionals in order to give as close to a diagnosis as possible so that parents can get either a referral or a free diagnosis from a state-employed doctor.

The second hurdle is treatment. Here in El Salvador there are a few private institutions which provide support, but even the upper-middle class can’t afford to send their children to get support from these institutions, meaning getting support is effectively out of reach for the general public. Being the only autism specific organization in the country, ASA is in the process of beginning to provide the treatment needed by so many children with autism, from speech therapy and physiotherapy to daycare.

When we spoke about this I could see Ana’s eyes brighten and the energy of our conversation lifted. In Spanish she told me, “Our plan is to have a free facility in every major town 10 years from now.” That is a big project. Her organization will have to more than double every year in order to accomplish her goal. I could feel from her tone that it was a matter of “how” and not a matter of “if” and it gave me a sense of great hope for the children with autism in El Salvador.

I cannot say I feel that same sense of hope in the other Central American countries I’ve been to.

Much Love,
Adam

El Salvador is one of the Central American countries with a brutal horrific past. Between 1979 and 1992 over 75,000 people were killed during their civil war. Entire colleges of Jesuits were killed during the night by the ruling party, framing the opposition in the act, to create more favor for the ruling party. Buses full of people were pulled to the side of the road, order to get off the bus and gunned down by militia – left to rot in mass graves or worse, not buried at all. People were killed for supporting the government and people were killed for not supporting the government – both sides committed acts that are unjustifiable by any measure but the worst were committed by the government at the time.

To get a good grasp on the civil war I suggest reading “El Salvador’s Civil War: A Study of Revolution” or “Mothers in Arms”, which highlights to stories of women who took up arms during the civil war.

If you read those books or not, it is important to realized that El Salvador had incredible political pressure and that less than 20 years ago there was a very real fear of death among the general population. In effect, no one was safe and voicing your opinion could get you and your family killed.

With that perspective in hand, I am trying to interview people who grew up during the civil war and were experiencing the fear of speaking up at a very impressionable age. Many of the people that were contact to do interviews spent the first 12 years of their live amidst terrible fears that were based in reality. Some lost family members during the civil war (either killed or “disappeared”) and now have a deep-seated fear of speaking up about social issues. To be frank, speaking up about autism in a way where people will know it is them is terrifying. Especially considering there is no real support for them and speaking up means speaking against the current government who were the rebels during the civil war – however, a lot of people do know what autism is.

When talking with doctors at the hospital I have seen their faces drain of color when I mention doing an interview in front of a camera. I’ve had families who became insistent that I not show their faces or names during the interview only to have them cancel the interview altogether.

Fortunately I’ve become well connected through the place I am staying (the Hotel Oasis – www.Oasis.com.sv) and their employees have reached out to their home communities and eventually arranged an interview for me to do with a father and his 12 year-old son with autism in a community some 3-4 hours away by bus. I leave tomorrow to film the interview.

Seeking interviews here has been an interesting experience. The general public is very comfortable talking about autism, even though they don’t know much about it, but no one is willing to speak on record. I’m sure that without the help from the staff of my hotel I would not have an interview to film in this country. Fortunately, I do have an interview to record!

As well, I’ve found that people here actually do talk about autism and it has been in the news lately, so awareness in El Salvador (or at least the capital, San Salvador) is pretty high relative to Mexico, Guatemala and Belize.

As far as the rest of life here in El Salvador is concerned, I find it quite enjoyable. Since I’m also training now for my return trip I spend a good amount of time workout out at the local park, which has a track, futbol pitch, basketball court, boxing club, guitar lessons, two street-food restaurants, and a constant buzz of energy (literally AND symbolically – there are power lines above it and you can hear the buzz of the electricity flowing through the wires). It possibly my favorite place in the city of San Salvador so far – mostly because it there is always something going on there.
On Saturday there was a car show at the park, Friday and Sunday it played host to futbol tournaments, and on Thursday I sat and listened to a local marching band practice on the pitch as well as several older men taking classical guitar lessons beneath the shade of a large mango tree. Overall I do enjoy San Salvador despite the occasional reminders of its history of violence.

Well, I’m off to bed – I have a bus to catch before dawn that will be the first of many buses as I travel to rural El Salvador to film an interview tomorrow.

Much Love,
Adam

Maybe it was just a reflection, maybe not.  But, if I looked soft enough at the reflections they seemed to fade from distinction, transforming into places I’ve never been and people I have not yet met – maybe it was my imagination.

As I stretched out, enjoying the ambience, I couldn’t help but smile – I was one sleep away from returning to the road and my exploration of autism in Latin America.  In less than 48 hours I’d be back to work, travelling through 9 countries at a pace that makes sightseeing nearly impossible.

Effervescing with excitement, I found it hard to fall asleep, but eventually, laden with ideas of what was to come, my eyelids reunited and I drifted into my last sleep for a while.

By 1:30 the next day I’d cleared U.S. Customs and was waiting patiently in the pre-boarding area.  I’d already down my last Tim Hortons’ coffee and donut, refilled my travel mug with a Starbucks and sat down to make some last-minute phone calls before heading into the unknown.  When 3:00 finally rolled around I boarded my flight, waved goodbye to Canada and flew to Denver.

In Denver I made my connection to Los Angeles with plenty of time to spare and once in Los Angeles I met up with a friend of mine and went to Manhattan Beach to grab dinner during my 5 hour layover.  Back at the airport I got out at terminal 7, at United, only to learn that my United flight was actually not in that terminal, since they didn’t have any flight leaving at 1:30am and that’s when my flight was scheduled to depart.  While at the security checkpoint in terminal 7 waiting to learn where my flight was departing from I talked to everyone working there about my journey, autism, and the challenges faced when dealing with autism at an individual and societal level.  After about 30 minutes they finally determined that my flight was out of terminal 2.

I left and stood by the curb, waiting for the inter-terminal shuttle.  5 minutes, 10 minutes, 15 minutes passed and no signs of a shuttle.  With only an hour and 15 minutes before my flight I decided I needed to take action instead of passively waiting for the shuttle – and so I ran.

I ran across 5 lanes of traffic, through 2 parking decks, across another road and arrived at terminal 2 in arguably less time than it would’ve taken a shuttle to drive there.

With my boarding pass in hand I checked through security and sat down to wait…again.

Waiting at that gate was a tired/humorous experience.  Over 150 people waiting for flights to San Salvador and San Jose (El Salvador and Costa Rica).  Spanish fluttered around the room and groups of Latina Grandmothers chatted and schemed about how they could get seated on the plane first (they managed to get seated first too!).  One young mother struggled to disassemble her stroller and I was able to use my expertise as an uncle to collapse the stroller for her so she too could board early.  There were wealthy Central Americans and hobo-esque Europeans backpacking the world, and as time passed the conversation in the room slowly dissipated until it was nothing more than an indiscernible murmur.

Soon my boarding group was called and I was seated, in the air, and trying to decide whether to pass the flight trying to sleep or watching a movie – I ended up somewhere in the middle.  I think I slept for 45 minutes, but only because there’s a 45 minute gap in my memory and not because I remember falling asleep or waking up.

Once back on the ground I grabbed my backpack, grabbed coffee at the airport, cleared customs and grabbed a taxi for the half-hour drive from the airport to the national university.  On the way my driver and I talked about El Salvador and how to get around the capital.  He went into great depths describing “pupusas” and I didn’t have the heart to tell him I’ve already eaten them.  The taxi dropped me off in the vicinity of the University and I was left to find my way to a hostel or guest house…it was 8:40 in the morning and it was more than 24 hours since I actually slept.  The exhaustion of travelling had begun to set the way it always does when you realize rest is coming soon.  It was then that I used several photos of my computer screen that held blurred details of hostel locations to try seek directions from local police – they were no help.  Apparently many people down here don’t know street names, they only know landmarks.  Finding any sort of hotel using only street names was not going to work, so I decided to wing it.

I cinched my pack and began to wander.  The morning cool was giving way to the heat of the day, but thankfully in less than 25 minutes I came across a micro-hotel that was reasonably priced, but is also has an owner who is helping me secure the interview I will do here in El Salvador.  I am there now and will be here for at least a few more days – and I’ll write about El Salvador and life as a backpacker.

Much Love,

Adam

Adam's gear for the 3rd leg of AfA

I think it’s pretty simply to prepare for an adventure like this – the best preparation is NO PREPARATION. Now, you still have to buy a plane ticket, take your backpack, a sunny disposition, and knowledge that everything will work out, but other than that you have to prepare by being completely flexible and travel with an open mind.

A year and a half ago I would have given a very comprehensive list of things that I need to take with me and why they’re important. I would have thought I need all the logistical/route plan and I’d have written and drawn them out before starting a 4 month trek across 9 countries and more.

However, after travelling across Canada, the USA, Mexico, Guatemala and Belize my perspective has changed a bit. I’ve realized the best preparation you can possibly have is joy, adaptability and few words of the local language. Other than that you might want to bring some sort of backpackers guide (I suggest LonelyPlanet) so you can have an easy way to find an “inexpensive” hotel on your first night.

So, now, with less than 2 weeks left before I head to El Salvador, a country I’ve never been to before, all I have is a plane ticket, a backpack, and the knowledge that everything will work out. I don’t know how everything will work out, but it will – it always does, I’m lucky like that. We’re all lucky like that – if we can learn to see ourselves that way.

As I make general plans for El Salvador and the next 4 months packing my backpack has come to the forefront of my thoughts. When I have to fit my life’s possessions in an overhead bin, how do I begin to pack? Well, I start with the essentials – laptop, camera, journal and a book. I consider these my essentials. I can survive with the clothes on my back, but I can’t stay mentally fresh or update this site without my journal, computer, camera or book.

After that’s established I begin with the clothes. I like to match and I don’t want to look like a “Fachudo”(the Central American Spanish slang for people who are, well, dirty hippies that don’t give thought to how they look). So, I pick out my shoes and my training shoes (I have to continue to train as I travel over the next 4 months) – brown casual shoes and FiveFinger Komodos for my training shoes. From there it comes down to essential clothes. I have to travel through 8 climate zones over the next 4 months and will experience summer, spring, fall and winter temperatures as I travel, so I have to prep for such by…bringing clothes that layer. Take those, a pair of work-out shorts, a few scarves and a travel jacket and I’m set! (With room to spare…some of which will be filled with Starbucks Via, a travel mug, and my old iPod that has only speakers and uplifting music on it)

Having room to spare is important! You’ll always end up picking up random things as you travel, from a souvenir to food, and having room to carry it is important.

Now that I’m done with that all I have left to do is think about how awesome the next 4 months are going to be – even though there’s the stark reality of how depressing most of the interviews I’ll do will be.

As far as I can tell, almost all of the countries I am going to have little to no support network for children and adults with developmental issues like autism. I will hear more stories of parents whose sole desire is that someone will look after their children once they are gone, of children being beaten because their condition is misunderstood and meet many people who have never even heard the word “autism” even though their son/brother/sister/daughter/niece/nephew has it.

However, I will continue to look on the bright side of the next 4 months otherwise the negative will bog me down and I won’t make it through.

For now, bring on the unknown! I live for the adventure!

Much love,
Adam