Recently, on the way to work I listened to sports commentator and writer Frank Deford talk about how Jeremy Lin became recognized for what he can do on the basketball court. Lin is an extremely talented basketball player as we’ve come to learn recently. But his ability was ignored until happenstance intervened: the owners’ lockout, salary-cap manipulations, trades that fell through, injuries and, at last, a coach’s sheer desperation. Lin was overlooked because, in Deford’s words, “It’s simply the usual common stupidity of stereotyping. It wasn’t just a matter of race. Scouts tend to be uncomfortable with anything different.”

Deford completed his commentary with this observation: “… what is so dispiriting is to contemplate not only how many basketball players, but how many other athletes, how many artists and actors and musicians and writers, how many special creative talents never get fulfilled because the experts, so-called, are always looking in the same places.”
I have been thinking that Deford’s lament rings true about young adults with autism, as well.

I’m going to lump employers into a similar category as scouts; not to be peckish,(?) but so I can ask the question, “Do you think there is a place in the mainstream work environment for young adults with autism?”

Think about it. The wealth of untapped expertise, knowledge and skill available from these young adults is amazing. But, as I mentioned, unrecognized. One of our experience guides has a veritable warehouse of information that he stores in his mind. Anything he has ever read, heard or learned is instantly available; it’s like a brain trust. Think of what companies could do with people like him.

He’s been working with us to develop the experience guide tours he will lead. The chance to take what he knows and to share it with others has given him a new lease on life. His mother says she hasn’t seen him this happy in a long time. Wouldn’t it be great if more young adults with autism were given the opportunity to shine?

One of our first blogs mentioned a Danish tech company called Specialisterne. The company only hires individuals with autism and trains them for IT work. A fabulous endeavor, but what if technology isn’t an interest for a young adult with autism? What if art or acting or cooking is the person’s passion?

We are working hard to open two locations for Erik’s Ranch & Retreats, where these young people will be able to choose how to use their talents. But, there are more young people who face employers whose vision is cramped and can see only what he or she has always seen.

So rather than belabor this point, I’d like to start a dialogue. I’m going to ask you, “What needs to occur so that the talents and skills of individuals who may not look or act the same as everyone else can be tapped instead of stifled?”

I’d like to ask you to share your thoughts. Maybe, by talking and thinking beyond the norm, an idea will emerge that will take flight and change the future for everyone. Maybe, just maybe, we can be their happenstance.

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At Erik’s Ranch & Retreats, we are excited to be on the cusp of unfolding new living and working opportunities for young adults living with Autism Spectrum Disorder (ASD).

This spring, we will launch Erik’s Minnesota Adventures with seven tour guides, young men and women between the ages of 16 and 26. Jimmy, Mariah, Eric, T.J., Maddy, Rick and Erik all have much to share; they also all live with autism. These new guides will soon lead tours that showcase their interests and knowledge of film, architecture, history, art, horseback riding and horse racing. Their potential is high in spite of the many daily challenges they confront as individuals living on the autism spectrum. Because they have benefited from services needed to maximize their potential in school and life, our guides have a bright future.

Our joy in the early career endeavors of our young tour guides is tempered by a real concern that others who now live with ASD may never make it this far. That’s because the American Psychiatric Association (APA) is revisiting the definition of the diagnosis of autistic. A potential change to significantly limit the definition of autism puts thousands of children and young people at risk of losing all funding for essential services. The APA review comes in advance of a new Manual of Mental Disorders. A proposed one-size-fits-all definition could mean sweeping changes for those who don’t have the most severe symptoms of autism.

Early intervention and ongoing support services are essential to the mental, emotional and social development of those with mild to moderate symptoms of ASD, including Asperger’s syndrome. Without these services, the potential for integration into society can be significantly reduced. Today, some of those who have autism are entering the workforce; and are contributing to society. There are people with autism who are scientists, artists or researchers. It is true that almost all of them needed extra support to achieve their goals; it’s also true this support has a cost.

What about the costs associated with narrowing the definition of autism (a move aimed at reducing this burden of support for insurance and government). A new diagnosis code for insurance does not take away the significant limitations faced by those who have Asperger’s syndrome. A change in the medical definition will, however, shift the burden of confronting these limitations from the greater society to the few who are most affected. Unlike many medical conditions, autism presents itself in many different ways depending on the individual. When language is not affected, some of the symptoms are virtually invisible. Yet the simple act of sitting in a school classroom, attending social events, interacting with family and friends and many aspects of daily life can be a huge struggle for those with ASD. Parents and other family caregivers are forced to quit jobs to manage care and to help navigate a world that seems a foreign place to someone with autism. Schools and communities also share the brunt of increased care needs when funding for special services or aides are cut. Of course, schools with 30 students or more in a classroom can only go so far. Without support services, young people on the autism spectrum are at risk of arriving at adulthood’s door without the skills or resources to contribute to their own well being in any meaningful way. If that happens, the government, and taxpayers, ultimately will pay a great deal for lifelong care that may be little more than a group facility’s room and board. This outcome is not only terribly sad, it is extremely expensive for all of us, and, it is preventable.

We do not understand the reasons behind an increase in autism or other chronic conditions that are swelling the numbers of those who require support. But narrowing our view of life for those with ASD is not the answer.

As research continues for causes, we should dedicate ourselves to maximizing the potential for all those who have ASD now. Rather than narrowing our definitions of a condition, we should broaden our thinking to allow contributions from all members of our society. We should explore creative options to ensure that those living with autism spectrum disorders have many ways to participate. These are actions that make a positive difference.

Changing the definition of Autism Spectrum Disorders is one thing. Reducing supports for individuals anywhere on the spectrum is backwards thinking. Changing the definition will not make Asperger’s disappear. For those on the front lines of living with ASD we know better. And we choose to move forward.