As we build the Minnesota and Montana locations for Erik’s Ranch & Retreats, the urgent need for safe, supported environments for adults with autism is undeniable.

Recently the Autism Speaks news site posted this news story: Fox News Looks at the Need for More Housing for Adults with Autism. Also contained in that posting was a survey that will help Autism Speaks “increase the support of both the public and private sectors to expand housing and residential supports opportunities for individuals with autism.” If you have a chance, go to the link respond to the survey.

I was saddened (but not surprised) by this quote in the Fox News article. “Approximately 80 percent of adults with autism up to 30 years old live at home for one reason—there is not enough affordable housing available, both the physical space and the appropriate supports,” Lisa Goring, vice president of family services at Autism Speaks, said.
The model we use for Erik’s Ranch & Retreats is one that not only offers a home, but also provides work and support based on individual need. More important, what sets this residential setting apart is that the residents will help run the operation. Both locations will offer guest accommodations and our residents will serve these guests as chefs, personal concierges, landscape architects, grounds keepers, whatever their passion.

As the communications director, I talk a lot about paying attention to the individual, not the diagnosis, and I believe with all my heart that this is the answer to helping adults with autism live rewarding and fruitful lives. Skills and abilities are latent in everyone, and everyone deserves the opportunity to explore theirs. That is our premise, at least.

The process for building what individuals with autism need is slow, but it is progressing, because more people are becoming aware of the problem. We are nearly ready to invite the first 13 residents to live in Erik’s Retreat in Edina, Minnesota. Funding, of course, is always an issue, but we work hard to find ways to garner financial support because the need is great.

Finally, I want to thank all of those who are helping to make the Erik’s Ranch & Retreats vision a reality. I hope that everyone who knows about our endeavor will pass the information on. More awareness, more support, more people who care will change the future for adults with autism.

 

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As communications director for Erik’s Ranch & Retreats, I sometimes like to offer up my views, ideas and thoughts about autism and the adults we serve. Today, I want to discuss advocacy and our upcoming Diamonds in the Rough, which is our inaugural art exhibit and sale.

On the surface, this event may appear to be a fundraiser. Although raising funds is part of the picture, it’s more. Many individuals with autism are talented artists who need an advocate to help them exhibit their work. As any artist knows, art is a tough business and assistance is often a matter of survival. Diamonds in the Rough can be your advocate. The event will include art from individuals on the spectrum, as well as established artists. The established artists may be what draws people in; but once collectors enter the gallery, they could easily discover an unknown artist: YOU.

This is an opportunity to do several things: 1) show your art to collectors, 2) hang your art in a prestigious gallery, 3) receive compensation for your art (artists on the spectrum receive 50 percent of the sale of their art) and 4) possibly be discovered.

There’s still time to submit, just visit our website and look at the Diamonds in the Rough submission guidelines or send an email to art@eriksranch.org and we’ll help you submit art for this event. But don’t wait; the submission deadline is July 30. Contact us today and let the world see what we already know: you have talent.

I want to introduce you to Stephen Shore, PhD, speaker, author and consultant whose expertise is working with people with autism.  Shore will speak at the Autism Speaks National Conference for Families and Professionals July 26.

Shore, diagnosed with autism at a young age and nonverbal until age 4, beat a lot of odds because his parents didn’t agree with the doctors that the only option was to institutionalize their child. Today, he is a professor at Adelphia University where his research focuses on matching best-practices to the needs of people with autism.

Shore will discuss his perspective on working with people with autism, and I was particularly drawn to this comment, largely because it is the foundation for Erik’s Ranch & Retreats.

He said, “Autism is a study of extremes, and if we can focus on the strengths and interests of individuals rather than weaknesses, a good employment fit is possible. All of us are more successful when working in an area related to our interests and this is especially true for people on the spectrum.”

Now, I’d like to introduce you to TJ, one of Erik’s Minnesota Adventures tour guides. For those who don’t know, we help adults with autism develop tours based on their skills, interests and expertise. The tours are complimentary, and we’ve been in business for more than a year. Our tour guides have led more than 160 tours with more than 630 volunteer guests. Guests couldn’t be more pleased with the entertaining and educational tours led by these remarkable individuals. TJ is a tour guide whose interests are varied, but we managed to narrow his tours down to art and architecture. For now.

His architecture tour includes the historic James J. Hill House in Minneapolis where he works alongside employees there to present its architectural background and history. So impressive is his knowledge of the history, architecture and background that he was offered the opportunity to apply for a job as a tour guide at the James J. Hill House. Needless to say, TJ was thrilled.

You know, we all shine when the light is cast on our abilities, and that’s the premise behind our program. Helping TJ develop tours that shine a light on his brilliance gave him an opportunity he wouldn’t have otherwise had. We all can excel when we are seen as a whole person. Seeing only autism is so limiting. So, I like to think we’re giving our tour guests the opportunity to see our guides as whole people. The rest comes naturally.

Traditionally, June is a time for graduation. A time for endings, and a time for beginnings. Young adults leaving high school look to the future with a mixture of eagerness and apprehension. This is true for any high school graduate, but particularly for graduates who live with autism. I ran across this blog on the Autism Speaks website. It offers suggestions, assistance and tips to assist parents of youth with autism to help their children make the transition.

As the blog notes, over the next 10 years, more than a half million children with autism will enter adulthood.

I know I’ve said this before, and maybe I’m preaching to the choir, but NOW is the time to act. To be fair, there are pockets of groups and individuals who understand this. I’ve recently learned of the Madison House Autism Foundation, whose goal is to develop a national conversation around and strategic solutions to the lifespan challenges faced by adults with autism and their families. There are others, but it needs to be a universal cause.

Despite the years of working to advocate for our own children, it’s become even more urgent to advocate for all children and adults on the autism spectrum. Yes, groups are doing that, and I’d love to tell you all the work is done and we can just reap the benefits of that work. However, that’s not the case.

At Erik’s Ranch & Retreats, we have found that with a dawning awareness of the need for continued supports, there’s even more work to do. As advocates for adults with autism, staff at Erik’s Ranch & Retreats look daily for new ways to help society understand that adults with autism have unique and special talents that they need to be able to express. Our tour program, Erik’s Minnesota Adventures is one example of taking the interests and expertise of an adult with autism and turning it into a job that serves that individual and the community at large.

Recently we launched Genuine Genius, videos of individuals with autism doing what they love. We’re soliciting and posting 60-second videos from people around the world to help show the world what we already know; those with autism have talents to share. Follow me on Twitter as I tweet the videos to my followers @KathrynNordberg or visit http://www.mygenuinegenuis.org, watch the videos and then share one of your own. Help society recognize the gifts individuals with autism have.

We, also, are preparing our inaugural Diamonds in the Rough, an art exhibit and sale to benefit adults with autism and Erik’s Ranch & Retreats. This October event will feature art from individuals with autism as well as emerging and established local, national and international artists. Artists with autism will receive compensation for submitting their art and becomes another way for these individuals to demonstrate their value to society and gain compensation for their talents.

I know everyone is busy, but take a moment to visit these sites and see how you can help spread awareness that individuals with autism are skilled and talented and deserve the same opportunities as their peers. This is, after all, a cause that will serve everyone, not just individuals with autism.

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.

If you’re in the mood for some deep reading, I have just the thing. As director of communications for Erik’s Ranch & Retreats, I follow news about autism fairly closely. Several weeks ago, in this blog, we focused on the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, or DSM-V, with the most recent changes, one regarding removing a diagnosis of Asperger syndrome. This change generated a lot of public concern. Then, just the other day, I found this article in the New York Times. It cited Dr. Thomas R. Insel, director of the National Institute of Mental Health (NIMH). He said the DSM-V suffers from a scientific lack of validity.

He wasn’t advocating ignoring the DSM-V altogether, because it is what we have. However, he indicated that science needs to go beyond diagnosing symptoms and focus on biology, genetics and neurosciences to get to the cause. As a result, Dr. Insel announced on April 29 that the NIMH has launched the Research Domain Criteria (RDoC) project “to transform diagnosis by incorporating genetics, imaging, cognitive science and other levels of information to lay the foundation for a new classification system,” and subsequently, more effective treatment. The RDoC is not a quick fix. It will take time to change the way research and diagnosis are conducted. But, it was heartening to learn that emerging data will be used instead of relying on static categories. It will also be interesting to watch and see the outcome of this endeavor.

Shortly after reading Dr. Insell’s announcement, I ran across this article in the New Yorker outlining how the RDoC will change the way diagnosis and subsequent treatment will be reoriented. I gleaned that the NIMH has implemented the RDoC project to continue to move research forward as well as the keep in mind the treatment of unique individuals, and I was encouraged. Which brings me to this story about Kevin, whose doctor already treats people, not just symptoms.

My whole point here is to reiterate that individuals with autism are unique and should not be defined by a diagnosis. When you look closely, you will find that extraordinary potential is not being tapped, and that’s a shame. Looking beyond a category and seeing a person will help foment change in perspective and treatment. That’s why the at Erik’s Ranch & Retreats has been not only to serve those on the spectrum, but to advocate on their behalf.

As director of communications for Erik’s Ranch & Retreats, I’ve recently had an opportunity to coordinate volunteers to help renovate Erik’s Retreat, our facility in Edina, Minn. Volunteers help with some pretty physical and dirty work. People come from book clubs, high schools, corporations, and as friends of families who have children with autism. They take time out of their weekends to help scrape and level cement floors, scrub wallpaper paste off walls, pull tile from bathroom floors; you get the idea. But everyone who has volunteered is intrigued with our mission and vision, and is eager to help and learn more. That’s not the case with everyone.

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One high school student who volunteered with us a couple weeks ago has three cousins with autism. She told me that one cousin wasn’t allowed to be in the school picture because he couldn’t smile properly. I felt like crying. OK, maybe the teacher of the child with autism was narrow-minded and more concerned about appearances, but the high school students who volunteered that day were curious and eager to learn. During lunch we talked about what Erik’s Ranch & Retreats is, what we plan to do and why their volunteering was important. They asked pretty deep and thoughtful questions; lots of them. Unlike the teacher with the smile problem, these young people wanted to understand about autism and what Erik’s Ranch & Retreats means to adults with autism.

Beth

Other adult volunteers have been equally as interested, asking questions about symptoms and how we work with our Erik’s Minnesota Adventures tour guides. After asking several questions, one woman said, “Wow, I clearly have had some misperceptions about people with autism.”

These volunteers (we call the elbow-grease gangs) have not only offered valuable physical labor, but they have taken the time to learn about people with autism. They come away understanding that although autism is a set of disorders, people with autism are individuals with talents and abilities unique to themselves—just like everyone else.

Ignorance may be bliss, but in this day and age, it is easily dispelled. That’s what Erik’s Ranch & Retreats is doing. Instead of trying to make people with autism fit some arbitrary norm, we are working to expand the norm to fit the individual. How does that happen? So far, we have our riding program, Erik’s Minnesota Adventures and a vision that sees what individuals with autism can do, not what they cannot. Soon, we’ll have another way for many others to help expand the norm. Watch for it in the next blog. You will be able to get involved and join the fun.

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.