Triumph and Tragedy: Book Club Recommendations About Children and All of Us

Triumph and Tragedy: Book Club Recommendations About Children and All of Us

Suskind, Ron (2014). Life, Animated: A Story of Sidekicks, Heroes, and Autism. Kingwell.

Gionfriddo, Paul (2015). Losing Tim: How Our Health and Education Systems Failed Our Son with Schizophrenia.Columbia University Press.

Life, Animated and Losing Tim are two narratives by loving fathers about their sons – one son with regressive autism and the other with early onset schizophrenia. Both fathers are highly accomplished and regarded in their professions and communities, as are their spouses. Both have resources to go beyond what most families could afford in order to secureneeded services and supports for their sons – although public systems (from child mental health to special education to disability and special needs systems) presumably are responsible for providing the needed care and treatment for these conditions, regardless of a family’s ability to pay. Both (and especially their spouses) became lay experts on their child’s condition and the most recent research and science related to it. Both knew where to go to get the best professional help that their sons might obtain.

Ron Suskind’s story of his son Owen’s development from toddler into adulthood is one of triumph. By any definition of the term, Owen is now thriving – not that he does not have autism but that he has been able to transcend many limits on communication his condition might have imposed upon him. He has had many helpers in this process – from clinical and developmental specialists to his parents and older brother and a host of people who came to understand him and be his friend, seeing him as a unique individual with strengths and principle. It wasn’t easy or cheap. But it represents the best in a story of what a continuous and relentless effort to foster inclusion can produce for one who so easily could have been excluded.

It was not that Paul Gionfriddo cared less or worked less hard for his son, Tim, but his is more a story of tragedy. Despite best family efforts to secure the best professional guidance and persistent calls upon public systems to meet their own missions and responsibilities, Tim faced a world – including school and community outside the family – that often was hostile and usually was insensitive to him, even though it was expected to help. He was blamed for ‘non-compliance’ to directives that were simply inappropriate for his condition– and faced many more actions of denial and exclusion than acceptance and inclusion.

Schizophrenia, of course, is a different mental condition than autism spectral disorder. Owen was diagnosed at 2 ½, shortly after the onset of his condition, while Tim was not correctly diagnosed with early onset schizophrenia at twelve but only until much later and after several other diagnoses that more labelled than helped him. Generally, toddlers are regarded as less responsible for themselves than adolescents, and their families are seen as more deserving of support. While both diagnoses carry a stigma, autism generally is seen as a disability mostly affecting the individual, while schizophrenia is viewed as a potentially dangerous disease that can affect others.

In both narratives, it is hard to conceive of these two children as having more caring families – including remarkably understanding siblings. That even the most nurturing and resourced of families need outside help is one lesson from these stories, and that the power of family cannot be replaced, but only supported, by clinical treatments is another. Society has a responsibility to provide help and support, in the context of the families themselves, and do even more for families who have less resources and supports than the Suskind and Gionfriddo families did.

In addition, however, in reading the narratives, it is clear that Owen being White and Tim being African American affected the responses to them. While their conditions themselves give rise to the danger of exclusion, race matters. All kids make mistakes as they grow and learn, and Owen and Tim are no exception. Yet what second and third and fourth chances they are afforded is too often determined by their socio-economic status and their race. Although not directly about race, Losing Tim cannot be read without wondering how much Tim’s race lengthened the odds that he could experience the successes and affirmations he needed and deserved from his world.

Neither book poses complete solutions to meeting the needs of children with mental health conditions which require extra attention and help – although Gionfriddo’s is detailed on the current shortcomings within today’s child mental health and special education systems and the policy implications to correcting them. Both, however, pose important questions to those in the policy world on how, as an egalitarian and compassionate society, we should do better for our kids.

These are rich stories and therefore do not lend themselves to easy or singular answers, but the detail in these two narratives shows that there are some answers – and that we can construct better public responses. Reading the two in close proximity enriched my understanding of both autism and schizophrenia in young people – and was well worth the time on that account. More importantly, however, it challenged me to think more deeply about fashioning public responses that have no easy answers or “sound bite” solutions.

I came across these more-or-less serendipitously – the means by which I am most likely to secure provocative new thoughts to my otherwise professional research and reading. I recommend others to read them, both as very good reads in their own right and in terms of the thoughts they provoke about child policy and race in American society.