When it’s seen as a disability, autism is being done a serious disservice. Yes, individuals with autism have different social and communication methods. But, those distinctions make them more aware of details that other people can miss or pass over.

An article in the Wall Street Journal discusses the value to employers in hiring individuals with autism, and we applaud this initiative for several reasons. First, despite graduating from high school, and in many instances college, about 85 percent of these adults with autism are still unemployed. Second, given the most recent announcement by the Centers for Disease Control and Prevention that one in 68 children are diagnosed with autism, we can only expect the increase in unemployed adults with autism to explode unless the rich abilities of these individuals are recognized.

This is a topic that I have discussed before in this blog, and it is heartening to see more changes beginning to take shape. It has always been clear to me that we should be more attuned to what individuals with autism can do rather than what they cannot. Working with their abilities is good for adults with autism, but it is also good for business and society in general.

Genuine Genius shows video from individuals who are skilled and talented and have passions that could translate into creative and functional career paths. But finding outlets for their genius is still daunting.

As we bask in the glow of the April grand openings of Erik’s Retreat in Minnesota and Erik’s Ranch in Montana, we know that living and working possibilities for adults with autism can and will become the norm. Because there are those who can see beyond the word autism to the individual, others will begin to see the potential.

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A recent study has affirmed my conviction that if adults with autism have meaningful work, symptoms of autism are reduced and their ability to navigate day-to-day experiences are improved.

The article that discussed the findings notes that, “Researchers at Vanderbilt University and the University of Wisconsin-Madison examined 153 adults with autism and found that greater vocational independence and engagement led to improvements in core features of autism, other problem behaviors and ability to take care of oneself.”

The information contained in this article verifies what we at Erik’s Ranch & Retreats have seen firsthand in numerous ways. One example is Erik’s Minnesota Adventures, which we launched in 2012. We hired adults with autism to lead educational, entertaining and unique tours throughout the Minneapolis and St. Paul metro. The tours are based on the interests and abilities of the adults with autism. In the past year and a half, we have watched each tour guide gain confidence, independence and social and communication skills as they have grown into their jobs. The transformation has been thrilling to watch.

The Vanderbilt study also notes that, “Underemployment is a common phenomenon among adults with autism, the authors noted, with around 50 percent of adults with autism primarily spending their days with little community contact and in segregated work or activity settings.”

Having said that, I also want to point to a blog I found on the Autism Speaks website about small business and adults with autism. This, too, confirms my belief that cottage industry will pave the way to meaningful jobs for adults with autism. Small businesses are more uniquely positioned to hire and work with adults with autism, in large part because there may be more flexibility, or the ability to tailor the work to the individual.

As we continue to develop Erik’s Ranch & Retreats, creating opportunities for individuals with autism, we work to develop jobs that challenge and reward them. We applaud all who have taken to heart the need to employ skilled and talented adults with autism.

Cottage industry may be the front-runner to successfully integrate individuals with autism and the broader community. The symbiosis of small business and adults with autism may be the missing link that will begin to lead the way for greater accomplishment in employment training and acceptance of different abilities. It’s a process we are honored to be part of.

An interesting blog in the Huffington Post by Whitney Bradley crossed my desk the other day. This first-person account of a young man with Asperger’s (I know, it supposedly no longer exists) syndrome is a sad testament to our society that I’ve brought up more than once in my blogs. The closing words of his blog still haunt me. “I’m lost, suffocating in poverty, and I have a disability that is the primary cause of that.”

Then, not a day later I found this blog by Amy Gravino, about adults with autism being bullied in the work place. It’s difficult for me to believe that such callous and unenlightened behavior continues to exist. People—adults in theory—tormenting those who are different and thinking it’s OK to do so. Business as usual.

In the first article, Bradley displayed a wit and sense of humor that belies his situation. I found his blog to be Bradley’s way of reporting the depressing state of affairs for many adults in his situation; bright, talented and gifted individuals, without the support and opportunities mainstream society enjoys. In both articles, bullying was a sad refrain. We work hard to stop bullying on the playground. Why is it being taken up again with impunity in the workplace?

Wouldn’t it make more sense to encourage the abilities of these individuals, while mentoring them in communication and social skills? Everyone would benefit. Companies would recognize the dedication and hard work that so often accompany a diagnosis of autism, not to mention the elevated skills in many instances. As Bradley said, “Not only can I fix your bicycle, I can explain to you what makes the steel tubing in it good or bad, I can explain how a triaxial weave works on your carbon frame, and the physics of how you shift gears or stop. With no prior experience I replaced the rear end on a Ford Expedition. And I did it in an afternoon, the right way.

“But what I can’t do is shake hands and make eye contact all day. That beats the hell out of me. Because of that, I’ve been homeless more than a few times.”

Society, too, would benefit economically if adults with autism were employed and individuals with autism wouldn’t be consigned to a life of poverty and isolation.

Gravino was fortunate, she found work where autism is understood and individuals with autism are supported. She is right when she states that bullying is an issue that doesn’t stop at the edge of the playground and needs to be addressed. The only way it can be addressed is to expose it. The only way to expose it is to be intolerant of bullying. Befriend people with different abilities, support their efforts and don’t look the other way or participate when bullying occurs in the work place. Be courageous. Take it into your own hands. Change the tide.

A Mother’s Holiday Wish

December 17, 2013

As 2013 winds down, my heart is full of appreciation for the remarkable progress we’ve made at Erik’s Ranch & Retreats. I won’t outline the strides that have been made in building a home for adults with autism that will also create jobs for them that fit their skills, interests and abilities. Instead, this blog is a mother’s holiday wish for adults with autism.

My son Erik was diagnosed with autism at age 2. At that time, two in 10,000 children were being diagnosed with autism. Today, as Erik has cleared his 22nd birthday, one in 50 are diagnosed with it. That’s a huge increase, but it also portends a grim future for those children once they reach adulthood. I realized when Erik was young that this problem was not being addressed, and I needed to address it. The idea of Erik’s Ranch & Retreats began to form because I didn’t want Erik to be without options.

As a mother, I know my son would be angry and depressed if he were relegated to a life of menial tasks. I couldn’t bear that. So, I’ve been working since 2008 to create a place for adults with autism where they can use their abilities to work in a safe and supported environment that is also their home. But I want this possibility for more than just my son.

In my dreams, I envision an environment for adults with autism that offers them the opportunity to develop their skills and translate them into meaningful jobs. These adults would be at home with peers and guests who come to stay at our ranch in Montana and retreat in Minnesota. Adults with autism and guests will get to know each other, fostering integration of community members into the lives of adults with autism and vice versa. As the lines of friendship form, the lines of what we perceive as normal become blurred, and a new definition of normal can rightly appear.

Do you think my wish is a pipedream? I don’t. To paraphrase Walt Disney, “If I can dream it, I can achieve it.” I invite everyone to participate in this dream.

As Erik’s mother and CEO of Erik’s Ranch & Retreats, my wish for everyone this holiday season is that if you have big dreams, you set out to achieve them.images

Happy holidays from all of us at Erik’s Ranch & Retreats

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.

 

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.

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.

Homes—real homes—for adults with autism are in short supply. Group homes don’t quite fill the bill for everyone; living with parents will only work for so long in most instances, living alone in a house doesn’t always work… . What is the solution to provide housing for a population that is growing quickly and subsequently reaching adulthood in large numbers? I ran across an excellent article on the Autism After 16 website that takes a serious look at this question. There isn’t an easy answer, but I think the direction to take is becoming clearer.

With the question of homes and jobs for adults with autism in mind, staff and board members of Erik’s Ranch & Retreats traveled to Bozeman, Mont., at the end of February to gather support and awareness for Erik’s Ranch, our home and work place for adults with autism in Montana. I was grateful to the new people who attended the meetings and for their obvious interest and willingness to learn about autism. With education and awareness comes acceptance. With acceptance will come willingness to interact meaningfully with individuals who have different abilities and who express themselves differently. Ultimately, and I don’t think this is a huge leap, jobs and homes will follow. Real jobs and real homes.

But, as a parent of a child with autism, I also know that in spite of interest and enthusiasm, life has a way of distracting those who don’t have someone with autism in their everyday life. The building of the ranch in Montana and our retreat in Minnesota will help to create an ongoing and visible presence, which fosters more awareness and acceptance.

The reason I once again bring up the topic of homes and jobs for adults with autism in this blog is because of the urgency I feel for my own son and the urgency I hear from other parents. If you have ideas or ways to reach out to each other, please do so. Connection and solidarity will help us to advance our cause naturally and with strength. We are all in this together, and together we can foment change.

This weekend I read two articles that made me think about the needs for adults with autism. One was from a Minneapolis Star Tribune feature, the other from Cargill News.

Homes for Adults with Autism

Alternative Living in the Star Tribune was about ingenuity that parents employ to find real homes, not institutional homes, for their adult children with disabilities. No longer believing that adults with disabilities have nothing to offer, parents have lobbied for and won services that allow these individuals to become self-sufficient as adults. So, homes that allow them to live with independence are a natural outcome. Families are getting creative and finding ways to give their children a home, not just a roof over their heads.

One section in particular from that article stood out to me. There are 1 million to 1.5 million Americans with autism, 80 percent of whom are younger than 22, said the Centers for Disease Control and Prevention. “The statistics are frightening,” said Tony Paulauski of the Arc of Illinois, an advocacy organization. “What’s going to happen to all these folks? We are bracing ourselves for a demographic wave and we are totally unprepared.”

Some of us, mostly parents of children with disabilities, saw this coming years ago. We have almost single-handedly been working toward a solution: homes and jobs for our children. But the need has become too great to apply it only to our own microcosm.

“People see how futile the situation is,” Paulauski said. “And as government continues to shrink, it becomes even more important that families look at other sustainable models.”

Jobs for Adults with Autism

In another article, the January/February issue of Cargill News, the company newsletter, I read about a positive outcome for young adults with autism who work inside a corporation, at jobs that use their talents and skills. As part of Project SEARCH (now called LEARN), 12 students with disabilities, including autism, were asked to intern at Cargill. Employees embraced the interns and were pleased with the outcome.

But individuals with autism know they have skills and abilities that are infinitely marketable; that’s not the problem. It’s employers who need convincing.

Debbie Dykstra at Cargill Canadian headquarters in Winnipeg gets it. “I think it’s easy to have preconceived notions,” she said. “We have to work to dispel those, and focus on matching an individual’s skills with our needs as an organization.”

Embracing creativity, standing together and stepping out of the societal comfort zone is the only way our loved ones with autism will have the jobs and homes they deserve.

Every part of our society needs to find a way to encourage meaningful participation in a variety of forms. All of us at Erik’s Ranch & Retreats are working to make that a reality.