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

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.

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 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.

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.

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.

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