Posts Tagged ‘Autism’

Have story, will travel

April 6, 2015
Next stop this Wednesday at Greenhorn Valley Library in Colorado City

I’m not the most natural public speaker, but one of the things I’ve enjoyed since publishing Full Tilt Boogie — A journey into autism, fatherhood, and an epic test of man and beast is getting out and talking to folks about the book, and about the autism epidemic, living with autism and parenting, burros and pack-burro racing. Believe it or not, there is a parallel.FTBcover200

I keep these things fairly low-key and informal, and seem to settle into a comfort zone by the time we get to the question-and-answer period, which I think is the most interesting part of my discussion. Frankly, I’m more concerned about what people want to know than what I have to say.

Recently I had the pleasure to talk to a fairly large audience at the Scottish Rites Foundation Dinner in Pueblo. What was really cool about this was having the chance to thank members of the organization for the assistance they provide children who might not otherwise receive important speech therapy services from The Children’s Hospital. My son Harrison received two of these speech scholarships at a time when it was critical in his development, and also when we could not have afforded those services.

More upcoming talks include:

  • Greenhorn Valley Library at 6 p.m. Wednesday, April 8.
  • Pueblo West Library at 7 p.m. Monday April 13.
  • Westcliffe Library Book Club, 11 a.m. Wednesday, May 27.

If you’d like to host one of my talks contact me at jackassontherun@gmail.com. I’m good for groups of five to 100 in book shops, libraries, art galleries, luncheons, or wherever anyone wants to hear my story. Will do my best to promote it as well.

Reflections on World Autism Awareness Day

April 2, 2015

Haspenscolor


Today on World Autism Awareness Day I would like to say that we all have much to learn from autistic people. Aside from the day-to-day challenges presented by parenting a child with autism — the tantrums, the noise, the frustrations — one thing I really appreciate about my son Harrison is his attitude of non-conformity.

It’s not just that he refuses to conform with many societal norms and expectations, but that he does so comfortably with no concerns for what other people think. Now this sometimes causes problems and embarrassment at school, in public places and even at home because of his difficulties sorting out impulsive behaviors from constructive ones. But that is also part of the autistic mind and something I hope improves with age.

I’m writing from the standpoint of someone who has not exactly lived a life of conformity, and perhaps I am somewhere on The Spectrum myself. I’ve never had a normal job (No, editing and writing for newspapers does not count as a normal job). I write, edit, take pictures and care for animals for a living. I’ve chosen to live in a rural mountain setting. And I’ve pursued a longtime passion for racing burros to the top of high mountain passes. But I can’t say I’ve been totally comfortable with all these choices. There’s always a nagging voice in the back of my mind asking me if I’m doing the right thing, telling me it would be safer to run with the herd. At the base of all this is some concern about what others think, fear of judgment and fear of the future. Mind chatter.

So while I have been able to make these choices I can’t say I’ve always been totally comfortable with all of them. It’s a struggle with the mind. Sometimes I question my lack of regular paycheck, reliable retirement, and the long commute to the grocery, though I know these are the prices I pay for relative freedom, doing work I value, and living in a wild setting. I can walk out my door and be running on a trail in five minutes.

Harrison on the other hand, seems totally comfortable with his choices to be himself. This often manifests in refusing to do his homework, which I sometimes view as as an avoidance behavior founded in self-preservation. What exactly is this school work preparing him for, anyway? Life in a cubicle? Instead he’s more likely to put all his energy and focus into understanding the inner workings of a door closer or learning to ride his bike. He’s comfortable with his choices because he simply lives in the present and really does not care that much about what anybody else thinks.

It makes me wonder if more of us shouldn’t be more like that. What type of world would we live in if more people paid attention to their present lives, and followed their interests and passions with reckless disregard for what other people think? Maybe today we should thank Harrison and other autistic people for helping us understand more about our own journeys, as well as theirs.

Maladjusted autism research syndrome

February 17, 2015

A horse is a horse, of course, of course

Last week I received from several friends a link to a story out of UC Davis headlined Newborn horses give clues to autism.” The link to the article also began appearing on social media news feeds.

Harrisonriding

Harrison riding a short-eared equine at Adams Camp.

I’m not one to overly anthropomorphize, but I’m always interested in any connection between autism and the animal world, so I clicked right on over. And there I read about researchers asserting a connection between Maladjusted Foal Syndrome and autism. I hadn’t read too far when I began to think, “This is just all wrong.”

First of all, these researchers are comparing a condition that is apparent at birth in a species that must walk within moments of being born, to an entirely different condition not apparent at birth in a completely different species in which the young do not walk until they are several months old.

This seems like comparing apples and oranges . . . to peaches and mangos.

In fact many people feel autism develops in humans much later than birth. Despite repeated “scientific” reassurances from the medical establishment and the government that vaccines do not cause autism, about half the population still believes they may play some role in its development. Many leading experts, including Temple Grandin, say the possible role of vaccines in autism warrants closer investigation. Personally, I believe the cause of autism to be rooted in some perfect storm combination of genetics, environmental triggers and multi-dose vaccinations.

Nevertheless, I read further, getting to this quote:

“There are thousands of potential causes for autism, but the one thing that all autistic children have in common is that they are detached,” said Isaac Pessah, a professor of molecular biosciences at the UC Davis School of Veterinary Medicine and a faculty member of the UC Davis MIND Institute.

Really?

Now this really sort of annoyed me, not only because it simply isn’t true, but also because quotes like this help perpetuate a stereotype. Autism affects many different children in many different ways, and detachment is not always present. Prof. Messah should meet my son Harrison. He’s not detached. And neither are many other kids on the spectrum. Autism is so much more complicated than that.

I wrote to Pat Bailey, the author of the article, and stated my concerns. I received a nice note back saying, “When Dr. Pessah used the term ‘detached,’ he did so with the full realization that it applies to a really broad spectrum, ranging from very, very slight to profound. And he certainly didn’t intend any disrespect . . .” She also mentioned that the core of this research moving forward will center on understanding neurosteroid levels in horses at birth.

I was not so much offended by the quote as I was struck by the apparent lack of understanding of autism. And, while there is research showing autistic humans displaying dysregulation of neurosteroids, there’s no evidence this has anything to do with anything that occurs at the time of birth. So once again, this horse-human connection is nebulous at best.

An MIT researcher recently predicted that at current rates half of all kids will be autistic by 2025. I’ve worked around equines — horses and donkeys — for 30 years and had never even heard of maladjusted foal syndrome. I appreciate researchers looking for clues to the autism epidemic but this really seems like a case of over-reaching to me. 

What we really need is more understanding and honesty about the real causes of autism, and also how to best help autistic people work with their behavioral challenges and reach their full human potentials. That’s where I see research into connections between animals and autistic kids to be most beneficial.

Check out my new book, Full Tilt Boogie — A journey into autism, fatherhood, and an epic test of man and beast now available on amazon.

Full Tilt Boogie Slideshow

January 14, 2015

I figure if movies can have trailers, then books can too.

http://youtu.be/cKO2tItkuv8

December 15, 2014

FTBad

‘Full Tilt Boogie’ available as ebook

October 26, 2014

FTBcover2 copy

My new book, Full Tilt Boogie — A journey into autism, fatherhood, and an epic test of man and beast is now available as an ebook directly from me. This ebook is a PDF that can be read on most tablets or your computer.

Full Tilt Boogie is a story of endurance and perseverance in the face of adversity, and is filled with parallels and metaphors for life. The book is organized as a series of vignettes that weave together to tell the story of how I set out at the age of 53 with a jenny donkey named Full Tilt Boogie to win a seventh World Championship in one of the planet’s most obscure and difficult endurance sports, while also struggling with the challenges of raising my autistic son Harrison, financial hardships, and aging.

To get a copy simply email your email address to me at jackassontherun@gmail.com. The book is “pay what you want” — there is a button on the copyright page and on the back cover directing you to an online payment form that takes Paypal or credit cards.

The ebook is also being published by Vook, and will soon be available on all major epublishing channels — Amazon, iTunes, Barnes and Nobel and others.

Print copies of Full Tilt Boogie will be available from me in the near future, and several signing events are in the works. Stay tuned for details.

This is an exciting time to be a writer, with so many ways to get your work out there, and also to get paid for it. I thank my readers for being a part of this journey.

“Inspiring, thoughtful, humorous, pensive, honest…a must-read for parents, athletes, ranchers, farmers, animal lovers. Without question, four hooves up!” Nancy H., Colorado Springs

“In two evenings I’ve experienced more than every human emotion; loved this book , what a great job you’ve done. God bless you all.” — Chuck L., Westcliffe

Between Autism and Alzheimer’s

December 3, 2012

punkin

By Hal Walter

Of all the holidays, Halloween is the one festivity that seems to turn out the entire Westcliffe community.

If it’s a school day the kids strike out as soon as the bell rings at 4 p.m., swarming in costume, many with parents in tow, to the downtown business district. Some of the adults wear costumes as well.

It amounts to a street party as the kids trick-or-treat the various shops and restaurants in the golden sunlight. For the grown-ups it’s a chance to socialize, and take time to actually talk with people you often only share waves with on the highway.

Over the years, the trick-or-treat routine has become less stressful. Our autistic son Harrison has gotten much better at the drill. In fact, this year in his “No. 2 costume” he often led the way in his little group of friends’ quest for candy.

It wasn’t always this way. I can still remember the first years when he’d follow the other kids into the establishments, and then quite often not find his way back out. Inevitably Mary or I would have to find our way through the sea of kids to locate him wandering around in the store or sidetracked by something inside. A couple of times he passed right through the store, through the back office and into the alley.

Some social skills are still lacking. Rarely does Harrison greet the proprietor with a proper “trick-or-treat” or say “thank-you.” We’re still working on that. But at least he doesn’t vanish inside the store.

It’s become customary for one family to host a Halloween dinner party for kids and parents. Afterwards we take the kids out to hit up some of the neighboring homes for more candy.

Actually candy and autism are a really bad mix. It’s a concession we make to allow him the social experience. After Halloween is over we toss most of the sugary GMO-laden junk.

But this year Harrison definitely ate too much of the junk early. At the party there were a couple of disruptive outbursts. Afterward, when we went out in the dark for more trick-or-treating, he did what he had not done in years — at one doorstep he dashed past a woman holding a bowl of candy and disappeared inside. His friends crowded the doorway, and I stood on my toes trying to see what was going on. Suddenly he came rambling back out the front door.

Number2 copyAt last another Halloween appeared to be over and we were driving home from the festivities. At the point where our road turns off the highway there was another vehicle out ahead in the oncoming lane moving very slowly. I judged its speed and distance, then went ahead and made the turn.

As I drove down the county road, I noticed in my rearview that the car had turned off the highway then stopped. About a mile later I noticed it was moving. As we rounded a bend it appeared the driver was flashing the brights.

I kept on driving. But the car drew closer and the headlights were clearly blinking more frantically. Here it was, Halloween night, and I wasn’t sure if it was someone needing help or whether it was some drunken crazy person, highway robber, a case of road-rage or whatever.

Finally we reached a place where there’s a sharp hill, a cattle guard and a driveway pullout on the right. As I passed over the cattle guard I cranked the car around in the driveway entrance, facing the driver of the following car and ready to roar away in the opposite direction if necessary.

What pulled up was an old man with Alzheimer’s, disoriented and lost. He first apologized for alarming us, but beyond that the discussion was muddled at best. He was aware enough to acknowledge he was lost and wanted help, but when I turned our car back around he apparently then thought he had been talking to two different people. He was 83 years old, driving a car around on Halloween and didn’t seem to have a clue where he was or how to get home.

Mary went into nurse mode with evaluative questioning while I found the miracle of cell-phone service right there and called the sheriff’s office. The dispatcher seemed to know exactly who we’d found, and said his wife had reported him missing that evening. Could we wait with him until the deputies arrived?

Of course.

We tried to make conversation as we waited. He was incredibly polite. We asked about his career life, his family; despite his lapses he was still quite sharp about these matters. Meanwhile he seemed preoccupied about his oxygen bottles. Were they in the back seat? Yes, they’re right there I told him. He asked this two more times. Once he got out and checked the bottles for himself. Then he asked me about the bottles again. It was a strange mix of memory loss and obsessive-compulsive disorder, which I have struggled with most of my life and which I now am aware also often accompanies autism.

All the while Harrison sat in the back seat of our car, happily sorting through his Halloween candy. The bright but waning gibbous moon was low in the sky over the Wet Mountains and I stood outside between the cars, my son with autism in one and the old guy with Alzheimer’s in the other. One in his early years and the other surely in his final few. One preoccupied with candy and the other with oxygen bottles. One with poor social skills and a near photographic memory, the other ultrapolite but unable to remember where his house is. The differences were striking, but some of the parallels were unnerving.

Finally the deputies arrived. The old guy asked if he could drive his car home and one of the deputies courteuosly told him they wanted to make sure he made it home safely. The old gent politely agreed.

They helped him into the passenger seat and soon he was on his way.

Thoughts on a snowy October evening

October 29, 2009

It’s October but outside it’s like deepest January. This beautiful doe showed up at the Hardscrabble Times world headquarters this evening just as I was signing out from an afternoon of work on a technical editing job. I actually took the photo through the window.

deer

Dr.Phil Maffetone has weighed in on the flu vaccine and the debate over the H1N1 “swine flu.”

Since finishing “The Horse Boy” the other day hardly an hour has passed that I have not thought about the book, the story and autism. Of course I’m reminded of autism all the time since my son

Harrison is an “autist,” a word I picked up from the book.

Harrison goes to the Custer County Kid’s Club after Kindergarten some afternoons. Yesterday when I went to bring him home I had extreme difficulty getting him into the car, seated and buckled up. I’ll spare you the details but just know that there was no reasoning with him and this ended up being a 25-minute ordeal. At one point I was so frustrated I actually considered sitting down in the snow in the parking lot to cry. And I’m not overly prone to shedding tears.

There is a certain obsessive-compulsive component that goes along with Harrison’s autism. For instance, when leaving for school in the morning, he has to stand against the refrigerator and see the headlights through the front door window when I start the car. Then, he has to run to the car, get in the front seat and “steer” the wheel four times. Not three times and not five, but four. Then he will usually get in the back seat and we can drive to school.

Then there’s the blender. We make smoothies often, starting the Vita-Mix on low, then dialing it up, and finally hitting the high switch for a few seconds to crack the flax seeds. This is simple enough except we need to consider Harrison’s sense of order. He must be in the room when we turn it on. Sometimes he will turn it on for us. Then he runs to the bathroom and closes the door as we dial it up and turn it to high. Once there, he runs out and turns it off, first switching off the high switch, then dialing the speed down, and then finally turning the machine off.

Any deviation from this order and a tantrum is certain. For instance, the other morning he was in the bathroom when I started the blender. Bad idea. If you don’t allow him to turn it off himself all hell can break loose. If you didn’t add flax seeds and don’t need to switch it to high, you better switch it to high anyway or there will be trouble.

Yet even with all these strange challenges, there are moments that are truly amazing. This evening he pulled a book — one that we don’t often read to him —out of the bookshelf, and started reading it out loud. Had he memorized this book word and verse or was he actually reading it? I believe the latter, but either is remarkable.

According to several sources, Ted Andrews, author of “Animal Speak,” the most comprehensive book of animal totems, died this week at the age of 57. This book has been an amazing source of spirituality to me and I actually learned of Andrew’s death after looking up deer tonight in “Animal Speak.” His words on deer say it all: “When deer show up there is an opportunity to express gentle love that will open doors to adventure for you.”

Weather animals and ‘The Horse Boy’

October 26, 2009

Generally speaking, I think most animals know more than humans do.  And certainly, in my experience, many animals are smarter than many humans.

So I startled myself a bit yesterday during a discussion with my neighbor Patti about our dismal October weather. She said her horse Sterling had put on quite the coat, causing her to wonder if winter was going to be really bad.

I flipped back something to the effect that if horses were smart enough to predict a winter’s worth of weather they would not be living in pens and subservient to humans.

So do I really believe this? I don’t know if I do or don’t. Is it possible that a horse can intuit things like El Niño, the tracking of the jet stream, polar air masses? And then grow a coat accordingly? Or is this cosmic weather station just hardwired into a horse’s central nervous system?

And what about the horses that didn’t grow a long coat for winter? Are they just not “in the know,” or do they merely like it cold?

Regardless of Sterling’s heavy coat, when I drove my son to school this morning the temperature on the Subaru thermometer was 2 degrees.  Last week we had 2 feet of snow. Even this human knows that’s way too wintry for October.

And speaking of the mystical world of animals, I just finished a book by Rupert Isaacson called “The Horse Boy.” This is the story of a father’s quest to heal his son who has autism. I found the book compelling on many levels. For starters, the story is an epic real-life adventure told in a very raw form.

Most familiar to me was Isaacson’s description of his son’s speech habits, peculiarities of behavior, and tantrums. Most valuable was the manner in which this father openly discusses his very personal feelings about his son’s condition, and the impact it has had on every part of his life, including his own physical and mental well-being and his marriage.

I also found the story intriguing in light of my use of saddle donkeys as therapy for my son Harrison.

Without spoiling the story, Isaacson discovered his son Rowan to have connections to the world of shamanism and also to horses. So he decided to take him to a place where shamans and horses are still an integral way of life — Mongolia. The resulting story is one of courage and triumph. I recommend it not only for people who are close to someone with autism, but also for anyone who likes a good adventure tale.

If I have any small criticism it is the appearance that Isaacson foresaw the marketability of this story well enough to bring a video crew along for the adventure. The film is due out this fall at special screenings all over the country.  Still, I think the richness of the story, along with the fact that the film will give millions of people an honest glimpse of autism, offsets this minor quibble. Plus, Isaacson has donated part of the proceeds to helping children, and I can’t blame a writer for wanting to make a buck off his work.

Let’s move beyond corporate health care

October 6, 2009

I was in full agreement with the president during his health-care speech a few weeks ago until he got to the part when he said he didn’t want to put the insurance companies out of business.

Why not? They’ve been working to put us — individually and collectively — out of business for decades. Let some of these quasi Ponzi-schemers collect unemployment or stand in a soup line for a while. It’ll be cheaper in the long run.

Oddly, I find most people who are against some sort of public health system to be the same folks who already enjoy the benefits of the best socialized medicine programs in the world: Medicare, VA benefits, PERA, etc. Why shouldn’t the rest of us have the opportunity to buy into plans like these?

Here’s a little story for you . . . I carry what is known as “major medical” coverage with a $5,000 deductible for myself and my son. Besides being the type of coverage many of my doctor friends carry and recommend, it’s also what I can afford. Plus, I figure why give the insurance companies a lot of money when they are likely to deny any claim I have anyway. (“We’re sorry, Mr. Walter, we didn’t know that you  . . . [fill in the blank: race pack burros, formerly worked in the newspaper business, ride saddle donkeys, run long distances, work around cattle, live in the same ecosystem with rattlesnakes, bears and mountain lions, have a rat terrier dog, drink water, breathe air, whatever]. We can’t possibly pay for your medical expenses. Perhaps the hospital would consider your home in partial trade for the amount due.”)

Or, just fill in a blank with “autism” and see what happens.

About a year-and-a-half ago we took Harrison to The Children’s Hospital in Denver to be tested for autism. The doctor told us right then and there he has autism, and we got out a credit card to pay for this testing ourselves, which is what we had intended to do from the very beginning without involving the insurance company.

A few weeks later we received via certified mail what amounted to an extortion letter from our insurance company alledging we had withheld a pre-existing condition — autism — when we signed up for our plan. The only remedy was a higher rate.

Huh? Check out the logic here. If we had known he had autism, then we would not be paying $2,500 out of our own pockets to find out he had it.

These greedheads aren’t just contemptible, they’re idiots.

Plus, here’s something else for you to think about. Why does my autistic son not deserve to have as good and as affordable coverage as anyone else? If anything, he should have better.

A new study published by the medical journal Pediatrics has found that autism is even more prevalent than previously believed. If this study is accurate, one in 92 children now have been diagnosed with autism, which translates to about 673,000 children in the United States.

And you were worried about the flu.

Like the flu, statistics for autism also are compiled by the Centers for Disease Control, but is this condition really a disease? Can it be controlled? We don’t really know what it is or what causes it. We don’t know why some children are more affected than others. We don’t know why some apparently snap out of it at a certain age, while in others the problem progresses. We don’t know of any definitive treatment.

We really don’t know squat about autism, but we do know this: It’s a growing health-care issue and insurance companies don’t want to pay for it. Yet another reason we need to move beyond the corporate-greed model of health care and on to what we have already proven works — some sort of public health-care system.