An Asperger Journey

Front and back cover, An Asperger Journey: From Hell to Hope (Cover designed by Elissa Alden Cary).

Memorial book gatherings:
Memorial book gatherings took place in Tallahassee, Florida, last week to honor the publication of my brother Loren’s autobiography, An Asperger Journey. The gatherings were sponsored by the Florida Trail Association and The Center for Autism and Related Disorders (CARD) of the Florida State University. It is a bittersweet time for us, for his family, loved ones and friends.

My sister Andy attended these events with Loren’s good friend and former counselor Tim Jens. They read passages from his book. Moving, engaging, sometimes painful, sometimes exuberant. Loren was supposed to be here, the star, glorying in his hard-earned achievements, signing copies of his book, talking about his experiences and his hopes.

But it didn’t happen this way. Loren died in May, suddenly, his overburdened heart overcoming his impassioned will. Now we carry on his crusade, my sister Andy and I, as best we can. But it’s not the same. No way Andy and I can fill in for Loren. No way we can see the world as he did, or share what he saw from his unique perspective, through his special insights. It's what makes Loren irreplaceable, the loss so great, our grief so deep.

Howard Pardue, an environmental activist with the Florida Trails Association, said "Loren's words helped me better understand what I experienced as we spend time in the woods on hikes and trail maintenance....that sometimes we sensed a need to keep a special eye out for him because of the disability that was then unnamed. I am honored our relationship was strong enough to warrant mention in his book. His story and that of the family is remarkable...and it is now available to all of us."

Overview of the book:
It took a long time to understand the unspoken problems that caused him to falter, time and again, on the road to adulthood. For my dear brother Loren, the journey to self-discovery required a warrior's courage, doing battle with a problem that had no name.

Some people in his life recognized this and stuck by him, encouraged him, our mom above all, and also some friends in Rochester, a professor at Culver Stockton, and reformers and friends who shared Loren's passions in Florida. But others along the way, maybe most people, didn't understand, and didn't care. They labeled him, got impatient, would not intervene on his behalf, would not offer special tutoring or instructions, would not hire him, would not mentor him, dropped him from their social lives. Rejection was a constant, and intensified his personal struggle. What makes Loren's story so special, so amazing, is his bravery in the face of such enormous challenges; as hard as the journey got, as heavy the burden, he never gave up. His story is about achievement against the odds.

Loren tells his story of growing up with Asperger's Syndrome, undiagnosed until he was in his mid-fifties, in his moving, honest, and inspirational autobiography, An Asperger Journey. As he put it, the book is about "my struggle to escape 55 years of torment by an unnamed demon to create a life of strength, grace, hope and dignity!" Andy and I thought that was too many words for the cover, but Loren stuck to his guns, and he was right, because these words convey his soul, the essence of his being.

Today, there is a lot more public awareness of the autism spectrum than there was when Loren was growing up in the 1950s and 1960s. Educators, the medical profession, and social service providers as well now recognize the importance of early diagnosis and intervention. The whole field of autism and Asperger's has taken off; books, websites, how-to guides and information are widespread and accessible. An Emmy-award winning TV biopic on Aspie Temple Grandin recently made the news. There is not always agreement in the autism and asperger's communities about causes or treatment, but at least there is an awareness and an activism that didn't exist when Loren was growing up.

Loren applauded these efforts and was a tireless advocate for the Tallahassee (Florida) Center for Autism and Related Disorders (CARD). He hoped his story would speak especially to adults on the spectrum and adult Aspies like himself with the message to never give up. As Alison Letzow of CARD said, Loren was persistent in making sure that adult issues were on the agenda.

Loren quoted Helen Keller: "To keep our focus on hope and behave like free spirits in the presence of fate is strength undefeatable."

Loren had the strength of a couger (on his favorite t-shirt from Costa Rica) and the free spirit of an eagle (on a large photo in his bedroom). If spirits live on forever, if the soul survives, surely Loren's is among them.