TO ASK KARL GREENFELD ON AIR:

HOW DO YOU TELL a 28-year-old son or daughter that he/she HAS ASPERGER’S Syndrome, a form of high-functioning Autism that mainly results in social learning disorders?

I look forward to hearing this program and reading the book. Though I have no family concerns with autism, it is the center of a public health controversy. A previous book by Greenfeld, China syndrome : the true story of the 21st century’s first great epidemic, was excellent coverage of the SARS epidemic.

“I love you Sammy” are words that resonate through my life. My brother Joshua was the second oldest of five siblings. Joshua was born with Downes Syndrome. Throughout my childhood I watched Joshua develop and grow at a different pace. He still maintained the role of “big brother” until I was taller than him. That is the point where he decided I was his big brother. He is the most caring and loving person in my family. His life and struggles have inspired me to be the person I am today. I wrote my college entrance essay (Brown University) about Joshua and how he was a blessing to my family. To this day I continue to volunteer at the Special Olympics even though we are divided by a continent (I am in CA and he is in RI). His life inspires me to thrive and overcome obstacles in my life.

Karl mentioned that he has witnessed some siblings turning their backs on brothers and sisters whose lifestyles they disapprove of. I have seen this, too, in my own life as a second born daughter followed closely by the birth of a first-born son. This placement in the birth line-up, of 6 kids total, made me the pre-designated “black sheep” of a large, unplanned family.

Frank J. Sulloway wrote a fascinating book entitled “Born to Rebel: Birth Order, Family Dynamics and Creative Lives”. I have found great comfort in learning that it’s really not so much about me, as a person, that my siblings reject, it’s more about their own positions in the “pecking order” and in sustaining parental approval, whether their presumptions about the chosen “scapegoat” are right or wrong.

Your loyalty and love for your brother are touching. Thanks for being the great brother that you are!

I am going to purchase this book. This interview brought tears to my eyes. I worked with severe autistic children, like Noah and worse until ill health forced me to stop. I have a boy with autism myself- and as hard as it is to be mum to a child with autism, it is just as hard to be a sibling of one – as my other children will attest.
Thank you for not only writing this book, but allowing this harsh and often overlooked condition to be brought forward to the public.

I am a young grandparent of an autistic child. I adopted his mother when she was 13, from a state agency. She is herself disabled due to mental illness, and her significant other is an older, and financially incompetent. My husband and I struggle to support them, without enabling them, and we see the handwriting on the wall. We will likely outlive my daughter ( or her ability to care for her son) and will be my grandson’s sole means of love and support in our later years.
The terrible truth is that we do not want this role.

L’Arche Irenicon located in Haverhill, MA for the past 25 years is one of the organizations that offers hope and peace of mind to families of developmentally and intellectually disabled adults.

Started in the 1960s in France, Jean Vanier, the son of a former governor general of Canada, and founder of L’Arche, has set up an international network of communities for people with develolpmental disabilities. L’Arche communities are built on honoring the unique gifts of people with disabilities. People with and without disabilities live together sharing life.

Vanier’s message of hope in working with the disabled is a healing message to a world that spends too much time shunning weakness and glorfing strength.

I just finished “Boy Alone” last night. So I was thrilled to hear Mr. Greenfeld on WBUR tonight. I am a parent of a son with multiple developmental disabilities and many “autistic-like” tendencies. I’ve been so concerned about the effects a child with developmental disabilities has on the whole family that I founded a non-profit organization in Northeast Wisconsin 11 years ago only devoted to the interests of children and adults who have siblings with disabilities. (website is above). Over half the children in our programs have siblings with autism.

Mr. Greenfeld is a talented writer and I’m grateful he has written this book. I appreciate the respect he has for his brother, his parents and other families facing these very difficult choices. He indeed, is NOT alone. There are many, many untold stories that siblings can tell…but will hesitate if in anyway their telling it would disrespect their sibling with a disability. Thank you for airing this respectfully done interview.

Karl talked about the sadness of never having a conversation with Noah. I had the privilege of being introduced to Facilitated Communication back in 1992, and since that time have helped dozens of families find a way to do just that. I am retired from teaching now (after some 30 years in special education) but continue to be blessed with opportunities like this. In fact I was listening to the radio interview on my way home from a day-long trip across the state to help a Dad learn to hold his son’s hand over a letter board so the two could “talk” to each other. Tears of happiness for this particular family mixed with tears of sadness for the Greenfelds. Reading Noah’s story many years ago was instrumental in the career choice I made way back when.

I heard the interview driving home from work. I will go out and buy this book now. I have a disabled brother that I have cared for since my parents passing and before that I was the one that was always responsible. I have had many of the same feelngs but always thought that I was wrong for having them. Thank you for doing this interview.

As an autistic adult myself, I have to admit that I was bothered by the tone of this show. Mr. Greenfield’s personal experiences are certainly valid and interesting, but the show was more about growing up with a sibling with a severe disability than it was about a sibling with autism. In my own family, I have always been the reliable, helpful sibling who could step into a parental role for my younger siblings when our parents weren’t around, and my “troubled teen” sister was the one who demanded the majority of my parents’ attention. I am higher functioning than Mr. Greenfield’s brother, as are most autistic adults, and I understand that he was not thinking of those of us on the rest of the autism spectrum as he was speaking, but it is very difficult for those of us who are autistic to participate in the autism community when the focus is so frequently on the burden that we are assumed to place on those around us.