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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Two significant news items about autism came out this week: The Centers for Disease Control and Prevention confirmed that one in 68 children is diagnosed with autism—a 30 percent increase in two years—and findings indicate autism begins before birth.

In a CBS news report regarding the increase in diagnoses, Liz Feld, president of the advocacy group Autism Speaks, said in a statement, “Behind each of these numbers is a person living with autism. Autism is a pressing public health crisis that must be prioritized at the national level.”

Although early intervention is called upon to help rewire the child brain, what happens to those who are fast reaching adulthood?

Michael Rosen, a spokesperson for Autism Speaks, pointed out the gravity of that question:

“We went from one in 110 to one in 88 and now one in 68, and these kids are getting older,” he said. “You don’t die from autism. You live a long life. So every year 50,000 of these kids reach 18 and lose their services. They need places to live, employment.”

“These are people,” Rosen added, “not numbers.”

The innovative model of Erik’s Ranch & Retreats seeks to provide a place to live, coupled with employment at Erik’s Retreat in Minnesota and Erik’s Ranch in Montana. Funding is what stands in the way. Join us as the grand openings April 11 in Minnesota and April 25 in Montana to learn how to help make a difference for this underserved population

Offer Hope, Change Lives

November 4, 2013

I was recently told that because autism isn’t life-threatening, it often isn’t a giving priority. But when I hear stories such as the one from the father who found Erik’s Ranch & Retreats too late for his son who ended his own life for lack of a supported living situation, I beg to differ. Or what about the Ohio woman who tried to take her life and her autistic daughter’s because the constant care and lack of resources became too much for the mother to bear. I could tell you many more such stories, but you get the point.

Maybe autism doesn’t pose the threats that those with a terminal illness face, but certainly it could be considered life-limiting. The need for productive and meaningful outlets for adults with autism is growing because the population is expanding. Society is unprepared to accommodate adults with autism. Government has begun to provide services to children but after a certain age, aid ceases. So, why am I bringing this up in this blog?

GiveMN is just around the corner. As communications director for Erik’s Ranch & Retreats, I’m going to ask you to consider making a donation to our nonprofit a priority during this charitable event. Erik’s Ranch & Retreats is more than a residential center. You see, we take the time to understand where our residents’ skills, talents and interests lie, and we help create jobs that suit their individual needs. Our approach is a departure from the usual method of finding any menial job and hoping that the individual can stand the monotony. But, like anyone who finds him- or herself in unproductive activities day after day, depression and anger often take over.

Erik’s Ranch & Retreats can help adults with autism engage in meaningful work, but we need financial assistance. That’s why I’m asking you to be part of GiveMN. You don’t need to be a Minnesota resident to give to our ranch in Montana or the retreat in Minnesota. Our doors will be open to adults with autism from any place in the world once building is completed.

You can begin donating November 1 right up through Give to the Max Day, November 14. Your donation will help us offer hope, security and a sense of self-worth to more young adults with autism. So please, donate to Erik’s Ranch & Retreats at http://givemn.razoo.com/story/Eriks-Ranch. Everyone deserves a chance to live a life of promise.

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.

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?

On November 29, Bob Wright, co-founder of Autism Speaks, stated this in his testimony to the House Committee on Oversight & Government Reform,It’s Time for a National Autism Strategy … to address the $137 billion per year cost of autism. The status quo isn’t working. It is time we commit to a comprehensive national strategy for autism.”

However, ignorance of autism is a major obstacle challenging the status quo. It’s not just the government that needs to be involved; it must be a universal endeavor.

I almost cheered when I read “Autism can be an advantage, says researcher,” on NBCnews.com. Dr. Laurent Mottron, a professor of psychiatry at the University of Montreal said, “By seeing autism’s differences as defects, researchers may fail to fully understand the condition.”

Through my son Erik, I have first-hand experience of Mottron’s assertion. Individuals with autism receive and process information differently, but that doesn’t mean they are deficient, incapable or ignorant. It just means they process and respond differently.

The unfortunate result is those with autism face challenges finding jobs, communicating with and being accepted by mainstream society. As Wright says, “The majority of adults with autism are unemployed or underemployed, a tragic waste of potential.” But, given a safe environment and an opportunity to express their strengths, they can thrive.

A recent New York Times magazine article features Specialisterne, a company based on the tenets that, “given the right environment, an autistic adult could not just hold down a job but also be the best person for it.”

Specialisterne has appeared in this blog previously. Currently, the company concentrates on technology jobs. However, not everyone with autism excels in technology. Erik’s Ranch & Retreats focuses on what individuals with autism can do—not what they can’t—and builds on those skills. Both models are viable and promote self-sufficiency among a misunderstood population. Recognizing autism as an advantage and thinking outside the status quo is what will move us beyond it.

Each individual possesses a set of abilities and a lack of abilities. Although we continue to be more inclusive and accepting, we need to speed the transition in our society to include everyone in a meaningful way. My question is: How can we make that happen?

The Americans with Disabilities Act changed building accessibility for physically disabled people, removing constraints where once there were many. Passage of Free Appropriate Public Education started the attempt to mainstream children. So, it can be done.

For those of us working with individuals with autism, our effort might continue with changing how we perceive autism and subsequently, frame it in conversation, interaction, etc. For example, in talking with parents, I try to focus on their child’s strengths and abilities. The conversation is about what these individuals can do, how parents envision their child’s future and how to help them accomplish that.

A parent recently told me that her 13-year-old son is tired of all of the training and drugs and therapies. He just wants to be accepted as he is (who among us doesn’t?). He wants to fit in, but societal tolerance for differences doesn’t allow that.

The point I want to drive home here is that despite a diagnosis of autism spectrum disorder, these are talented individuals first and foremost. If they happen to be missing a few skills that we “neurotypicals” have come to expect as generally accepted, why can’t each one of us, with foibles of our own, accept their differences?

Let me liken what I’m saying to being around people who speak a different language. When I go the home of a board member who is from China, I immediately switch gears. I try to understand the language going on around me. I use my tiny bit of Chinese to interact. I don’t think, “Oh, this person has a shortcoming, he or she doesn’t speak English.” I just switch gears. I try to communicate as best I can and include everyone. Usually our board member’s parents are sitting with us at dinner and I want to include them in the conversation Her father will tell stories of China and she will translate. Yes, it’s extra work. It takes more time and patience. But everyone is included and it is meaningful to all.

I want to be clear that I am not suggesting that no one should have a diagnosis, or that no one should get extra support or accommodations. In fact, we need to provide more supports and ways to fit in so that individuals are not shunned because of their diagnosis, but embraced because of their abilities.

I know we aren’t going to change people’s perception overnight, but as I have continued to work over these past four years to develop Erik’s Ranch & Retreats, I have seen our reach expand. The media has picked up what we are doing; our social media has made people all over the world aware of our program. Corporations are taking notice. We have contacted special education teachers around the nation and they, too, are taking notice. Slowly but surely, a paradigm shift is occurring.

What ideas do you have for expanding what is accepted behavior in our society?