Tuesday, September 22, 2009

Saving Ben A Father's Story of Autism by Dan E. Burns


Each year thousands of children are diagnosed with autism, a devastating neurological disorder that profoundly affects a person’s language and social development. Saving Ben is the story of one family coping with autism, told from the viewpoint of a father struggling to understand his son’s strange behavior and rescue him from a downward spiral.

“Take him home, love him, and save your money for his institutionalization when he turns twenty-one.” That was the best advice his doctor could offer in 1990 when three-year-old Ben was diagnosed with autism. Saving Ben tells the story of Ben’s regression as an infant into the world of autism and his journey toward recovery as a young adult. His father, Dan Burns, puts the reader in the passenger’s seat as he struggles with medical service providers, the school system, extended family, and his own limitations in his efforts to pull Ben out of his darkening world.

Ben, now 21 years old, is a work in progress. The full force and fury of the autism storm have passed. Using new biomedical treatments, repair work is underway. Saving Ben is a story of Ben’s journey toward recovery, and a family’s story of loss, grief, and healing. “Keep the faith, never give up.” These are the lessons of the author’s miraculous journey, saving Ben.

“Saving Ben is a haunting tale, so powerfully told that readers will find it practically crawls under their skin as they flip the pages. The story is told through the sensibility of a father searching for clues in a public library that might help him understand the nature of his son’s strange behavior. Answers don’t come easily. It will take years for the father, distracted by grief and denial, to see his son as his darling “scarecrow,” a never-ending work in progress, but also a gift. This is no ordinary journey, with no neat and tidy resolution. It’s the story of Benjamin’s downward spiral into a world not well suited to deal with him. Only a father who grew to love his son unconditionally, a father who was willing to sacrifice all for his son’s sake, could save him.”--George Getschow, Writer-in-Residence of the Mayborn Conference, University of North Texas

“This is a significant work to help inform parents of autistic children. Dan Burns shows he is a pioneer in his struggle to recover his son.”—Dr. Constantine Kotsanis, Wellness Metabolic Institute

About Author:

DAN E. BURNS, Ph.D., graduated from Oklahoma State University in 1979 and taught English at Southern Methodist University, University of Texas at Arlington, and University of Phoenix, publishing in numerous scholarly journals. In 1990 his third child, Benjamin, was diagnosed with autism. Dan helped organize a Dallas chapter of FEAT, a support group for parents, and pioneered educational and medical interventions. In 2006, Dan and his former wife Susan joined forces to implement the new biomedical treatments coming out of the Defeat Autism Now! movement, including Applied Behavioral Analysis, sensory integration, megavitamin therapy, and detoxification. Dan and Ben live in Dallas, Texas.
University of North Texas Press

Imagine your child has an illness and every doctor/medical researcher has a different idea on what will heal him. Many will even say that there is no cure for his problem - Autism. Unfortunately, because thousands of children are diagnosed every year chances are that someone reading this may living this nightmare and not imagining it. Autism remains a highly debated neurological disorder. Children and adults with autism have a wide spectrum of functionality and different treatments seem to work differently for everyone.

Saving Ben is Dan Burn's story of fighting to cure his son Ben of autism and of a family learning to cope with the life changes it presents. When Ben was born in 1987, Dan and his wife Sue were in a great place. They were more financially sound than with their older children and hoped to be able to provide more for Ben. The birth was normal, and except for Ben's large head and constant crying everything seemed to be fine. Dan and Sue followed the path of many parents before them - they figured out what the kid liked and used it to stop the tears. At this point, Ben may not be the easiest baby, but everything is still "normal". As Ben grows older it is obvious that something somewhere has gone wrong. Speech regresses, odd behaviors occur, and a plethora of health problems ensue. When autism if finally diagnosed it seems like they are finally on the right path to healing. It didn't take long for them to realize that autism is definitely NOT easy to fix.

Dan and Sue begin the journey to heal Ben of autism together, but the overwhelming work and their own personal issues begin to seep in and they divorce. During the novel, their relationship is very unhealthy. They spend times working together on a cure for Ben and times where Sue is accusing Dan of inappropriate behavior with their son - just to give an example. Sue has at this point developed mental health issues and really can't be trusted to be the same person from day to day. Dan is not off the hook either. He has repressed his homosexuality for many years and caused his share of grief to the family with his inappropriate actions.

Over the course of Ben's childhood so many different methods of treatment are tried. Sometimes with great success and other times with glaring failure. What remained impressive to me was how hard Dan would work to help his son. He would give up everything to provide Ben with one on one training. His love is never doubted. Sue's love for Ben is also apparent, but because the story is from Dan's point of view it can be harder to see its shine through at times.

This memoir is both touching and frustrating to me. Dan's fight to "save" his son make it obvious his love for Ben and his willingness to try whatever is needed. However, it is frustrating to see that this process requires much experimentation on a child. Please don't misunderstand me I am not implying that Dan or anyone involved in Ben's care treated him inappropriately. It is quite obvious that all methods were applied out of love and a desire for Ben to have more. The frustration I felt was more at the disease and its unpredictable patterns.

Also discussed sporadically in this book is Dan's struggle with his sexuality. I felt that Dan began the novel with a bluntness about his struggle, but then didn't follow through on how he eventually dealt with it or came to terms with his feelings/desires. He lays it out as a basis for some of the family dynamic issues, but I wish he would have explained a bit more. I am not asking for a play by play of sexual encounters or even a disclosure of his relationships, but I felt after its strong reference in the beginning that is should have been more than a side note later. He presented his battle but never let the reader know if he fully accepted himself.

Sue's battle with mental illness is presented only from an outsider looking in point of view. At times, I felt I could feel the bitterness that Dan had about her issues. Overall, I thought he was supportive and presented the situation as honestly as he could.

I found this memoir to be quite intriguing. I do not have a child with autism and was shocked at how much work, research, and emotion goes into it. I commend any and all parents in this situation. I can only imagine that if they were to read this they would relate on so many levels. It was beautiful to see a father with that level of dedication. He wanted to heal Ben at any and all cost. It was touching when he came to terms with the fact that Ben would not be healed, but could be provided a life at a higher level of functioning. I think it was quite clear that Dan will fight for this for as long as it is possible.

I would love to hear from any of you that have dealt with this personally and have read the book. Did you relate? Was it like reading your life? I pray that each of you in this situation find comfort and healing for your child and peace with yourselves that you are doing the best you can.


  1. What a poignant story! It seems that as time goes by, more and more is discovered about this illness...and perhaps some hopeful solutions are on the horizon.

    But this family's struggle certainly highlights the experimental nature of the journey.

  2. I totally agree with you about the frustration. It seemed so ridiculous the hoops that had to be jumped through to find something that would help to improve his son's daily life/ I read this book and thanked my lucky stars that my daughter is healthy. It would take such a strong person to persevere with not only autism working against you but also those "professionals" that are their to help.

  3. This sounds like a fascinating and positive memoir. There's so much research going into autism, and it affects so many people. This would certainly be an interesting book to read.

  4. Thanks for your review Alison! I still have yet to read this book but want to even more after reading your review.

    My nephew is currently undergoing testing to see if he is autistic. I have several close friends with autistic children and have worked with autistic children in my previous line of work at the hospital. I hope one day they find a cure or a way to rid this horrible disease from our society and children!