Grain Bins by Jane Strauss

Grain Bins by Jane Strauss

After months of planning, soliciting art, working out logistics with Griffin Gallery personnel, the art exhibit and sale, Diamonds in the Rough, is shaping up nicely for its October 11 launch. We’ve received an array of art from jewelry to ceramics to paintings to photography. There really will be something for everyone.

Now, this event could be seen as merely a fundraiser; however, it’s more than that. It’s advocacy. Some pretty talented artists on the autism spectrum have provided art for this event. Our own TJ Jameson, Erik’s Minnesota Adventures tour guide and artist extraordinaire, will be one of the featured artists. Candy Waters, a spectrum artist from Illinois, submitted art prints that we’ll exhibit and sell. Georgina Robertson, a United Kingdom spectrum artist is also part of the show. The list goes on.

Established and emerging artists not on the spectrum, such as relief sculptor Bill Mack, ceramics artist Stephanie Evans and photographer Jeff Hawe, have donated works, as well. This is an event you really don’t want to miss.

You see, the vital aspect of this event is introducing the vast array of talents and abilities that individuals on the autism spectrum possess. At Erik’s Ranch & Retreats, we’ve built programs around what adults with autism can do, focusing on their talents. Society in general is not really working at including adults with autism from that perspective. It’s easier to try to fit all people into molds that we are comfortable with, but in the instance of autism, that doesn’t seem to work too well.

Dress Boxes by Stephanie Evans

Dress Boxes by Stephanie Evans

We need to change the paradigm, and one way to do that is to make society aware of the value of the skills and abilities that individuals with autism possess. Now one art event probably won’t change the misperceptions of autism overnight. But by helping people change their perspective through events such as Diamonds in the Rough is a start.

But, don’t take my word for it. Join us. You can purchase tickets online, and if you can’t attend in person, give the tickets to friends. It’s just one more way to advocate for individuals with autism.

Robin Hood's Nottinghamshire, by Georgina Roberts

Robin Hood’s Nottinghamshire, by Georgina Roberts

I know this, and I know you know it, too: Everyone has special talents or interests that are worth recognition. Erik’s Ranch & Retreats already focuses on what individuals with autism can do, rather than what they cannot. But we want the rest of the world to focus on that, too. By showing your child’s or a young adult’s genuine genius, we can help broaden society’s perspective of what is normal.

Here’s how it works: Send us a 30-to-60-second video displaying random acts of brilliance from your Genuine Genius (child or young adult with autism). Maybe the individual is an artist or singer, a math wiz, horse trainer or has a special interest or hobby. Whatever his or her passion or expertise, we want to share that with the world and help create a society that offers individuals with autism the same opportunities the rest of us take for granted.

Once we have amassed a collection of videos, we’ll also display the truly vast array of skills and talents this population collectively possesses by Tweeting them, sharing them with our Facebook fans and posting them on our website to show the world their individuality. Help us spread the word.

If you want to help us share these random acts of brilliance, log onto mygenuinegenius.org to find out how to submit a video and show the world the amazing abilities, skills and passions of your genuine genius.

I watched an interesting video the other day. A young woman named Faith Jegede talked about what she has learned from her brothers who both have autism. This arresting comment she made toward the end of the video made me want to stand up and cheer.

“The pursuit of normality is the ultimate sacrifice of potential,” she said. “So, please don’t call me normal.”

I applaud Faith’s perspective and admission that, yes, there have been trials when it comes to her brothers, but they recede in light of what her brothers have taught her about life and living.

I know that we have just gone through Autism Awareness month. But, I think there’s more to do than just making people aware that autism exists and that it has become an epidemic.

Society would be better served by looking past the differences of individuals with autism. Expanding our idea of what is normal bears consideration. They are who they are, as we are who we are. I want to be accepted for who I am. I should not expect that to be any different for someone who has autism.

Let me tell this story to help illustrate what I mean. A young adult with autism was asked to participate in an internship at a large company. The work he was assigned was menial and mostly repetitive; certainly not a job that would challenge anyone. One day a piece of equipment came in that needed repair. None of the professionals could figure out what was wrong, and therefore, couldn’t fix it. While they went on break, however, the intern diagnosed the problem and repaired the equipment, saving the company thousands of dollars. But, rather than recognize his abilities and promote him to more suitable work, he was merely thanked and sent back to his menial tasks.

When the myopic pursuit of normal is expanded, potential will no longer be sacrificed.

Here is some really good news. Federal Court Strikes Down Blue Cross of Michigan’s Denial of Applied Behavior Analysis Therapy to Children with Autism.

Finally, I can sleep better at night knowing that the federal court has stepped up to the plate and called a spade a spade: “The court, noting that (Applied Behavioral Analysis) ABA therapy is supported by numerous authorities, and is not supported by Blue Cross’ own medical policy, held that Blue Cross’ denial of insurance coverage for this therapy on the ground that the therapy is experimental was arbitrary and capricious under federal law.”

Insurance companies have for too long held families captive by withholding from their children the assistance of a therapy that has decades of documented and proven results, and has been replicated around the world. It works. Because they have refused to pay for ABA therapy, children who might progress to normal or have improved symptoms are left bereft of the life and abilities that could be their own. They are left without the hope of a normal life. As a result, the cost to care for them once they become adults is astronomical and becomes the taxpayers’ responsibility. The annual cost to society of autism is $137 billion. The Autism Society cites estimates of $3.2 million for the lifetime costs of such care. Caring for an adult with autism in a supported residential setting can cost $50,000 to $100,000 per year.

But, it doesn’t have to be this way, and with 40 years of proven results, ABA offers hope and help to children from all walks of life. This video shows just a few instances of how ABA affected a handful of children in Minnesota. It must be made more widely available. Finally, with the backing of the federal court, we may see strides being made in serving the nearly one in 50 children who are now being diagnosed with autism.

After running our therapeutic riding program for almost two years, I have become more attuned to the therapeutic quality of the interaction between people and animals. I have enjoyed observing the difference in the youngsters who attend our riding program and was gratified to see this article focusing on how such classes can benefit adults: Therapeutic Riding as a Means of Teaching Job Skills.

More recently, I read about the boost animals give to social interaction in children and how therapy dogs help individuals with autism. The connection between animals and individuals with autism is well-known, and it isn’t limited to children. Adults, too, develop deep bonds with animals—maybe because animals don’t judge. Through unconditional acceptance, I believe that individuals are more apt to connect with others and believe in themselves when an animal is present.

We at Erik’s Ranch & Retreats have seen first-hand the value of partnering animals with individuals with autism. In nearly all instances, therapeutic riding students have had remarkable experiences as the father of Jack, a 12-year-old with autism, describes: “Here is a little slice of life from Jack’s experience. Jack and Bailey [the horse] were trotting around the arena. Jack was posting, and as he stood up in his stirrups, Bailey leaped two feet in the air. She came off the jump into a cantor. A huge smile broke out across Jack’s face, as he thrust his little fists up into the air. I asked Jack how it felt. He said, ‘It felt like flying.’ As his parents, we felt like we’d just jumped over every obstacle we’ve ever had.”

I have spoken with most of our parents, who are always thrilled at the changes our classes bring about in their children. One mother told me that before she enrolled her son in therapeutic riding classes, she’d cringe each time the phone rang. She was sure another group or program couldn’t handle her son and she’d be asked to remove him from the program. But, therapeutic riding had such a positive impact on her son that, she says, she will drive to the ends of the earth to get him to his class.

Another mother has a daughter, Katie, with autism, who is allergic to horses, but the impact on Katie has been so great they work around the allergies. Katie’s mother says, “Riding really triggers her sensory system in a positive way. The motion and movement are so calming and positive. She started out on a Western saddle and gradually shifted to an English saddle as you can really feel the horse better with an English saddle. She’s learned to steer the horse, use verbal commands, play games, and best of all, trot and canter.

 

Katie with Dolly

Katie with Dolly

There are so many creative and innovative ways to help children and adults with autism integrate into a world that misunderstands and sometimes avoids them. It has long been obvious that animals provide a catalyst for people to interact, and I, for one, am thrilled to see these methods being employed as assistance to help integrate individuals with autism.

Tell us about classes or groups that help your loved one with autism. Everyone will benefit from knowing what is available.

A National Institute for Mental Health press release issued January 15 proclaimed, Study Documents that Some Children Lose Autism Diagnosis. This study, conducted by autism researcher Deborah Fein, PhD, and colleagues at the University of Connecticut, was funded by the National Institutes of Health. It focused on 34 individuals who had been diagnosed with autism at a young age, but moved off the autism spectrum, as they grew older.

“Although the diagnosis of autism is not usually lost over time, the findings suggest that there is a very wide range of possible outcomes,” said NIMH Director Thomas R. Insel, M.D. “For an individual child, the outcome may be knowable only with time and after some years of intervention. Subsequent reports from this study should tell us more about the nature of autism and the role of therapy and other factors in the long term outcome for these children.”

But, in reading the article, I thought to myself “Am I reading this correctly? It suggests that we finally have scientific data to support that children actually do lose their diagnoses, and then goes on to say that “we really don’t know how to do that,” but we should figure it out?

We’ve had data for some time, and a proven method, which shows that children can indeed lose their diagnosis of autism.  In 1987, Ivaar Lovass, PhD, showed through Applied Behavioral Analysis (ABA) that children could recover from autism. Lovass Institute Midwest, in Minneapolis, directed by Eric Larsson, PhD, LP, BCBA, has documented recovery levels of 60 percent for children treated. Impressive and amazing. Yet the scientific community continues in this ongoing and pointless battle of whether ABA is valid. If a cancer treatment had similar data, it would have been implemented across the board decades ago. Recovery means normal social skills and normal IQ. Most of us would give our right arm to have that for our children (even if some symptoms remain), and half of them can achieve those outcomes if provided with the appropriate early intervention. It is what the world needs now, and has needed for years.

In an editorial by Sally Ozonoff, joint editor of Journal of Child Psychology and Psychiatry, said, “Moving the possibility for recovery from autism spectrum disorder (ASD) beyond public discourse and into scientific discourse is critical. No, recovery won’t be possible for everyone. No, recovery is not the only outcome worth fighting for. But it is high time we, as a scientific field, talked seriously about this as a possibility. As recent political events have demonstrated, hope can be a powerful tool. By demonstrating that there is solid science behind hope, we can add fuel to the urgency for very early diagnosis and intensive treatment of ASD.”

Then, I ran across this blog by “There is no such thing as false hope. There is only hope.” on Autism Speaks. I believe the author is spot on with her comments and I have to wonder why are we still dancing around the word recovery? Why not just implement a method that includes early intervention and has such a terrific track record?

Positive awareness of perceived disabilities in general, and autism in specific, is growing everywhere, and the Miss America Pageant is no exception. This year’s event was distinctive due to some of the contestants’ background stories. Two in particular stand out to me: Miss Montana, Alexis Wineman, is the first contestant to have autism, and Miss Iowa, Mariah Cary, who has Tourette’s Syndrome.

Recognition of these two individuals is remarkable in so many ways.  The most important being that the people, not the disorder, became the focus. So, I took time to view this link to Miss Montana and was certainly impressed with her platform, Normal is just a Dryer Setting. One thing she said in her video stood out to me, and I think it personifies what we’d all like to see relative to those with autism. “We cannot kill what is not a sickness,” she says. “But we can begin to understand autism and help those [with autism] to unlock the potential that lies in all of us.”

Truer words were never spoken. Even though she did not win the pageant, her message and the awareness that comes with her presence on stage are priceless.

I’ve been thinking lately about the misunderstanding that so many in our society have about individuals on the autism spectrum. Although autism spectrum disorder (ASD) is termed a developmental disability, it doesn’t mean people with ASD are incapable or unstable.

I believe personal interaction (meaning getting to know individuals with autism) would dispel a lot of the mystery around ASD, but there hasn’t been a clear reason for people to do so. As a result, when incidents such as the one in Newtown, Conn., occur, assumptions are made—erroneously, more often than not. A case in point was the media suggestion that Adam Lanza was on the autism spectrum, which precipitated the violence. That assumption prompted Kerry Korner to present to the media a more accurate perspective.

Along the same vein, in a conversation with a friend recently, I was surprised at his lack of understanding about autism. This man is intelligent and well-read, but woefully misinformed about the disorder, and especially about the individuals with ASD. In my own way, I presented him with a more accurate perspective. So, let me say unequivocally that only personal interaction will allow us to see a person not merely a disorder.

That is the tenet behind Erik’s Ranch & Retreats and, specifically, Erik’s Minnesota Adventures. Six adults with autism hold positions as experience guides, taking groups on two-to-four-hour educational, entertaining and enjoyable tours. Judging by the response to these tours, I know we are on the right track. The experience guides, experts in certain areas, get to show participants who they are, while increasing their confidence and social skills. Participants generally learn something new, while interacting with a talented individual who happens to have ASD.

So often when groups take a tour, attendees describe their experience as exceptional. Really, if you stop to think about it, getting to know anyone requires a leap of faith and willingness to spend some time. So, don’t let a term like autism stop you from getting to know someone with ASD. You’ll never know what you might have missed if you don’t seize the opportunity.

At the end of November, the American Psychiatric Association (APA) approved eliminating Asperger syndrome from the fifth edition of Diagnostic and Statistical Manual of Mental Disorders (DSM-V). Instead, the disorder has been absorbed into the diagnosis of autism spectrum disorder.

David Kupfer, MD, chair of the task force revising DSM-V and psychiatry professor at the University of Pittsburgh, says the change aims to ensure that affected children and adults receive a more accurate diagnosis for the most appropriate treatment.

Because the DSM is the authority by which providers and insurers make treatment and service decisions, uppermost in the minds of members of the autism community is how this change will affect services. That question forms the basis for a letter from Geraldine Dawson, PhD, chief science officer, Autism Speaks to the APA. She urges open-minded, ongoing review of six pertinent points before committing to this decision.

Fred R. Volkmar, MD, director of the Child Study Center, Yale School of Medicine, resigned from the DSM-V task force earlier this year because he opposed the change. He says, “The new definition will end the skyrocketing autism rates … But at what cost? The major impact here is on the more cognitively able.”

On the other hand, others, including Sally Ozonoff, PhD, professor of psychiatry at University of California Davis, support the new diagnosis believing it will expand services and improve therapy. She wasn’t involved in redefining Asperger syndrome, but she wrote in an email to the New York Times, “… I can state that the intentions of that group, and of most professionals in the field, would not be to exclude anyone from services or to tighten criteria to reduce the number of diagnoses.”

This is a hot topic and will continue to be one until there are tangible results for comparison. As Dawson admonishes in her letter to the APA, “It is crucial that the impact of the proposed changes be closely monitored and assessed.” Only time will reveal whether the new definition is a benefit or a detriment.

Share your thoughts about absorbing Asperger syndrome into autism spectrum

In mid-May, National Public Radio (NPR) ran this news article: 1 in 3 Autistic Young Adults Lack Jobs, Education. This information is not news to parents who have watched their children with autism grow into adults with autism. However, that doesn’t make it any less unsettling.

The article discusses the results of a study that appeared in Pediatrics, based on data from 2007-08. “One in three young adults with autism have no paid job experience, college or technical schooling nearly seven years after high school graduation, a study finds. That’s a poorer showing than those with other disabilities including those who are mentally disabled, the researchers said.”

This study was done before the recession and unemployment escalated in 2008. So, with the job market still being tough, imagine how dire the situation is for adults with autism.

This news, along with new data from the Centers for Disease Control and Prevention that indicates diagnoses of autism has risen to one in 88 births, is the reason we are building Erik’s Ranch & Retreats in two locations. Something needs to be done.

Now. Not in10 years when more than 500,000 children with autism become adults.

I think if you don’t know someone who has autism, or aren’t a close relative, these statistics don’t seem as urgent. But think about the implications. Without jobs, a half million adults will rely on some government subsidies. As our population ages and the number of older workers retire and turn to social services, an economic crisis could easily result. So, this crisis isn’t just limited to adults with autism and their families. It’s really a global concern that must be addressed.

Addressing the Need

Paul Shattuck, an assistant professor at Washington University’s Brown School of Social Work in St. Louis and lead author of the study mentioned in the NPR story, says this: “There is this wave of young children who have been diagnosed with autism who are aging toward adulthood. We’re kind of setting ourselves up for a scary situation if we don’t think about that and how we’re going to help these folks and their families.”

This is where Erik’s Minnesota Adventures comes in. It offers opportunities for adults with autism to work when other traditional businesses shy away from hiring them. I recently heard from a friend who invited members of her book club to take a tour with Erik’s Minnesota Adventures. Here is what she had to say. “We just went on Mariah’s Celtic tour. It was obvious to everyone that a lot of time and effort went into planning this tour (as I’m sure has gone into the other tours). We were enchanted by what we learned, our interaction with Mariah and stepping beyond our usual comfort zone (we took an Irish dance lesson) on turf that was not customary. I have to tell you, this tour was the most fun we’ve had in a long time for all of the reasons I just mentioned.”

Another thing I’ve learned about people who don’t know someone with autism; assumptions are automatically made about their abilities. In fact, when I told another friend about the tours with Erik’s Minnesota Adventures, he was astonished that the experience guides are able to conduct the tour. This lack of awareness about autism is a huge barrier and even more reason for people to get to know individuals with autism. These tours are designed to do just that. They are at the heart of our purpose; bidirectional integration (a term we coined). Or in simple language, this kind of exposure helps those with autism gain socialization, communication skills and self-confidence as experts in an area. It helps those without autism expand their socialization, communication skills and self-confidence in interacting with different capabilities. Seems like a win-win to me.

So, go ahead, engage your sense of adventure, speak out, reach out and step out of your comfort zone to help expand awareness. Take a tour, tell someone you know about what we are doing; get involved.