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.


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.

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.

Think about a time when your self-worth took a hit. Chances are your confidence took a dive and you needed reassurance. Maybe you turned to family, friends, co-workers or someone you trusted to regain your self-esteem.

But, what if you didn’t have a circle of support? Where would you turn if every time you tried to engage or interact with others you were shot down? Can’t imagine it? Well, maybe this article from the Billings Gazette will give you insight into what it is often like when a person has autism spectrum disorder (ASD). This comment from the article haunts me: “He was void of self-worth.”

The topic of self-worth has surfaced in this blog more than once. With good reason. There is in our midst a population of individuals who are misunderstood, and as a result, shunned or passed over because of their differences. It takes courage to keep going in adversity, and when you’ve been beaten down, it takes more than courage. It takes belief in yourself. But, where does that come from? As the article points out, when Morris’s self-worth and confidence was restored, the Guardian Spirit was the tangible result. I have nothing but praise for the therapist who recognized a potential solution and encouraged Morris to pursue it. Granted Morris had to develop his self-worth in a virtual world, and it changed his life, but what if he’d had a supportive environment to begin with?

Maybe I’m preaching to the choir here, but I need to say this until it’s heard by many more of us. So many individuals with autism spectrum disorder have talents, skills and abilities that languish in vibrant and creative people, with no outlet. Like Morris, these individuals need encouragement and support.

As you may know, Erik’s Ranch & Retreats has programs at both facilities in Minnesota and Montana called Erik’s Minnesota Adventures and Erik’s Montana Adventures. Adults with ASD lead tours that run the gamut from trail rides to architecture to history to art. Similar ideas will catch on eventually. Other groups will recognize the value of creating and providing opportunities, spawning new means of integrating people with different abilities into the mainstream. But it takes time, and time is a commodity that many adults with ASD see draining away.

Articles such as the one about Morris are important and inspiring. They bring a momentary flurry of attention. But, they are too quickly forgotten as we go about our daily business, our attention diverted to our immediate worlds. I hope to inspire conversation with these blogs. Conversations that spill out into the mainstream consciousness and help to change perceptions. So, I ask you to share these blogs with your social media groups, family, friends, whomever. Let’s begin to dispel the confusion and mistrust that surround ASD and introduce the real people and their value to our immediate worlds.