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.

Earlier this year, revisions to the autism diagnosis in the Diagnostic and Statistical Manual, Fifth Edition (DSM-V) were announced. Parents of children diagnosed with autism were concerned that this change would affect services provided to their children. Even though the new criteria for diagnosis are touted as an improvement to diagnosis, which will provide better services, these parents’ fears seem to be justified.

After merely three months since the DSM-V came out, the Autism Action Network sent an action alert requesting information about how services are being eliminated for individuals with autism. It seems that there are institutions and organizations that have taken the DSM-V criteria and used it to say, “you no longer have autism; so you no longer receive services.”

I have to lament here that the funding battle to help our children just never seems to end. I believe unreasonable thinking has sentenced this population to warehousing or to depression, incarceration and even suicide. From the DSM-V standpoint, it seems we value money far more than the lives of these individuals—we are unwilling to incorporate changes that would make a space for different abilities.

So much of the battle has to do with misperceptions and misunderstandings and staying silent about them. There are ways to foment change and many are incremental. However, if we don’t raise our voices, little will change. Advocacy starts on an individual level and will not reach a global level until our voices are heard.

The Autism Action Network is one voice that is raised. Send your stories to this group and help turn the tide.

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.

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.

Everyone knows you can’t fit a square peg into a round hole, right? If that is such common knowledge, why does society have so few molds into which people can fit?

 

As you’ve probably guessed, I’m talking specifically about adults with autism, but generally about anyone perceived as having a disability. Take a look at this letter from John Franklin Stephens to a celebrity whose tweet used the word retard to describe the president of the United States. You can read his entire thoughtful rebuttal here, but this is the opening comment:

 

“…you aren’t dumb and you aren’t shallow. So why are you continually using a word like the R-word as an insult?

 

“I’m a 30-year-old man with Down syndrome who has struggled with the public’s perception that an intellectual disability means that I am dumb and shallow. I am not either of those things, but I do process information more slowly than the rest of you. In fact it has taken me all day to figure out how to respond to your use of the R-word last night.

 

“I thought first of asking whether you meant to describe the President as someone who was bullied as a child by people like you, but rose above it to find a way to succeed in life as many of my fellow Special Olympians have.

 

“Then I wondered if you meant to describe him as someone who has to struggle to be thoughtful about everything he says, as everyone else races from one snarkey sound bite to the next.

 

“Finally, I wondered if you meant to degrade him as someone who is likely to receive bad health care, live in low-grade housing with very little income and still manages to see life as a wonderful gift.”

 

Franklin’s comments struck a nerve with me. His eloquent depiction of what is endured by those who are perceived as different hits home for many on the autism spectrum. It seems that rarely, people look beyond the exterior. But, what if we looked deeper? What if we could see the diamond in the rough? It’s always there; we just need to look past our prejudices.

 

So many people are discounted and even shunned for their differences. But, like Franklin, they persevere and see life as a gift. Let me give you some examples.

 

Oscar Pistorious, born without fibulas in his legs, fought for and won the right to compete in the 2012 Olympics. Nicknamed the Blade Runner because his lower legs are fitted with metal blades, he came in second in his heat. Initially, his bid for the Olympics was rejected because he doesn’t run like everyone else. Eventually, someone saw beyond the surface and let him run. And run he did.

 

Or this video of a young girl with autism, Jodi DiPiazza, who displays a “learning difference, not a learning disability” as she plays and sings with Katy Perry at “Night of Too Many Stars: America Comes Together for Autism Programs” on Comedy Central. As the video shows, medical professionals gave her parents little hope. But, they were wrong.

 

It was the same story for my son Erik. Medical professionals said horseback riding and other sports such as skiing could be dangerous. But we didn’t give up. It took two years to get him to hold the tow rope and now he skis. It takes him a long time to learn, but he can learn.

 

In these examples, someone had the vision to see beyond the surface to what’s inside. When that happens, people can soar. Sometimes it may take a little more effort to pay attention, give someone free rein and follow his or her lead. But when we allow ourselves to change our perception and give someone a chance, magic happens.