Living with autism or Asperger’s syndrome

The desire and right to live your “best life” doesn’t exclude those living with autism or Asperger’s syndrome (ASD); it does mean, however, that every opportunity to expand the child’s world of interest should be thoughtfully explored.

Autism is a disorder that affects the brain, making it hard to be socially active or communicative; in some severe cases it also creates physical limitations.

The number of people diagnosed with ASD has grown since being recognized in 1948. Cases are being found more frequently—one in 150 of American children—with numbers surpassing kids with AIDS, and cancer combined. For years, people lived with symptoms and “quirks” that they just couldn’t explain. Uncle Jim who always repeated himself; cousin Tina who never wanted to play with anyone, or Mike from up the street who would just sit and stare. People growing older in years who were never diagnosed or treated, were forced to believe false truths about themselves simply because the information and treatments weren’t in place.

“It used to be when the every day person heard the term autism they automatically heard ‘handicapped,’ but that just isn’t true,” says Sarah M., whom I met while performing in Wichita, Kan., a little while back. Sarah got my attention with her artwork; it was displayed in the halls of the theater I was playing in. It was colorful, bright and totally unimagined; it was also whimsically free with true perspective. I thought it had to be the work of a seasoned professional; instead, I met a quiet but strong, 120-pound, 16-year-old girl with high-functioning autism as a gift.

Autism had given back more than a little of what was “taken” when Sarah was diagnosed at 6 years old. Autism had fashioned a painter-savant.

I sat down with Sarah for a short while and even had dinner with her family of six who have a very active schedule—busy with outings and sports, music lessons, church socials and even a bit of milling around the farm and trips to the doctor for two youths with special needs. They had a son living with Vater syndrome and, of course, Sarah who has ASD.

Sarah credits early detection, her parents and the professionals she worked with for keeping her on task and interested in broadening her life. Nurturing her enthusiasm for art only came about through trying new things to keep her stimulated. Constantly reassuring her that she was already perfect in every way and had a valuable voice helped foster her desire to create expressive art.

The now-17-year-old professional painter says “things are much different now for people living with autism; so much more has been learned since its first diagnosis.”

I found her story extraordinary, a true savant, a word you don’t hear often, but its usage is growing synonymous with people living with autism. After researching, I found that Sarah M. is one of many who stand on the creative battlefield waving banners of success and living their best life with autism.
Best-selling author and essayist Daniel Tammet, concert pianist Derek Paravicini, and actor Dan Aykroyd are all autistic. It was even rumored that Bill Gates and Michael Jackson both showed signs of having Asperger’s syndrome.

Sarah M. is a gift, but so is every child, including one with autism. They all have different strengths and needs. Sensory issues and the inability to express emotions can make the journey of daily living more complex for a child with autism. These children need planned transitions, positive routines, positive feedback, loving care and patience. But isn’t that what we all need? There is a saying, “everything you need to learn, you learn in kindergarten.”

We learn how to be helpful, thankful, patient and tolerant. These are the same attributes needed to care for children with autism who become adults with autism.

Sure, daily life with a special-needs child presents many unique challenges. However, we do not need to add to those challenges. We need to embrace the challenges that will become triumphs in the lives of many. As I looked into my new friend’s eyes, I could see that she yearns to be just like everyone else. She said that she always wanted to be like every other kid on the school yard, free, loved and filled with the imagination of life. Sarah M. deserves that, she also deserves to know that everyone is different and in that sense she is very normal.

Although the child affected by autism may never experience the negative emotions associated with the diagnosis, their parents, siblings and extended family members must remember that they can be infected by our care, understanding and inclusiveness. Sarah and the other success stories aren’t the only ones; more are being created every day.

But it’s only possible with education, preparation, stimulation and understanding. Not everyone has a family to help and hold, or instructors to help him or her find their road.

But we can all be the difference by stepping up, getting informed and helping. They say it’s always darkest before the dawn. It turns out the dusk isn’t so bad after all; it makes the sun shine much brighter, when it does come out.

I left Wichita having learned so much more about autism, met an extraordinary person, but most importantly I experienced the passion and life that exists within a child.