Making sense of autism: Progressive engagement with science among parents of young, recently diagnosed autistic children

This exploratory study examines the significance of science to parents whose children were recently diagnosed with an autism spectrum disorder. It asks: (1) In what manner did science emerge in parents’ concerns and resources as they attempted to understand and advocate for their children? (2) Did some parents engage with science in a qualitatively deeper or more intense manner? Using longitudinal data from interviews and a novel data collection strategy called engagement mapping, it shows that parents asked questions and used resources that were strongly associated with science, but these were vastly outnumbered by “near-science” concerns and resources that mingled meanings from science and daily life. Several parents in the study wove together concerns and resources in an iterative pattern referred to here as progressive engagement with science.

[1]  Alvin M. Weinberg,et al.  Science and trans-science , 1972, Nature.

[2]  P. Bearman,et al.  Diagnostic change and the increased prevalence of autism. , 2009, International journal of epidemiology.

[3]  Mike Michael,et al.  Science, Social Theory and Public Knowledge , 2003 .

[4]  etc.,et al.  Inarticulate Science?: Perspectives on the Public Understanding of Science and Some Implications for Science Education , 1993 .

[5]  C. Silverman.  Understanding Autism: Parents, Doctors, and the History of a Disorder , 2011 .

[6]  D. Gray,et al.  Lay conceptions of autism: parents' explanatory models. , 1994, Medical anthropology.

[7]  Steven Epstein,et al.  Patient Groups and Health Movements , 2008 .

[8]  Rosaline S Barbour,et al.  Checklists for improving rigour in qualitative research: a case of the tail wagging the dog? , 2001, BMJ : British Medical Journal.

[9]  G. Dedić.  Maslach C, Schaufeli W, Leiter M. Job burnout. Annu Rev Psychol 2001; 52: 397-422. , 2002 .

[10]  Brian Wynne,et al.  Misunderstood misunderstanding: social identities and public uptake of science , 1992 .

[11]  Amy M. Hightower,et al.  Science and Engineering Indicators , 1993 .

[12]  S. Epstein.  Impure Science: AIDS, Activism, and the Politics of Knowledge , 1998 .

[13]  W. Schaufeli,et al.  Job burnout. , 2001, Annual review of psychology.

[14]  Serge Moscovici,et al.  Psychoanalysis: Its image and its public , 2008 .

[15]  Michael E. Gorman,et al.  Trading zones and interactional expertise , 2007 .

[16]  S. Freytag.  Image And Logic A Material Culture Of Microphysics , 2016 .

[17]  Christopher E. Clarke.  A case of conflicting norms? Mobilizing and accountability information in newspaper coverage of the autism–vaccine controversy , 2011, Public understanding of science.

[18]  Mike Michael,et al.  Misunderstanding science?: Ignoring science: discourses of ignorance in the public understanding of science , 1996 .

[19]  E. W. Jenkins,et al.  School science, citizenship and the public understanding of science , 1999 .

[20]  R. Casiday,et al.  A survey of UK parental attitudes to the MMR vaccine and trust in medical authority. , 2006, Vaccine.

[21]  S. Epstein.  Impure Science: AIDS, Activism, and the Politics of Knowledge , 1998, Nature Medicine.

[22]  Susan Leigh Star,et al.  Institutional Ecology, `Translations' and Boundary Objects: Amateurs and Professionals in Berkeley's Museum of Vertebrate Zoology, 1907-39 , 1989 .

[23]  Anselm L. Strauss,et al.  Basics of qualitative research : techniques and procedures for developing grounded theory , 1998 .

[24]  Wiebe E. Bijker,et al.  Science in action : how to follow scientists and engineers through society , 1989 .

[25]  M. W. Krauss,et al.  Psychological well-being and coping in mothers of youths with autism, Down syndrome, or fragile X syndrome. , 2004, American journal of mental retardation : AJMR.

[26]  L. Lecavalier,et al.  Comparing Autism, PDD-NOS, and Other Developmental Disabilities on Parent-Reported Behavior Problems: Little Evidence for ASD Subtype Validity , 2011, Journal of autism and developmental disorders.

[27]  T. Gieryn.  Cultural Boundaries of Science: Credibility on the Line , 1999 .

[28]  N. Heinrichs,et al.  Parent Recruitment and Retention in a Universal Prevention Program for Child Behavior and Emotional Problems: Barriers to Research and Program Participation , 2005, Prevention Science.

[29]  A. Baram‐Tsabari,et al.  A growth medium for the message: Online science journalism affordances for exploring public discourse of science and ethics , 2011 .

[30]  M. D. Carpini,et al.  Public deliberation, discursive participation, and citizen engagement: A review of the empirical literature , 2004 .