The Prodigy's Cousin (32 page)

Jonathan Russell, for example
:
Jonathan Russell, telephone interview, Jan. 20, 2014.

Chapter 6: Chromosome 1

Kristine Barnett's first pregnancy
:
The events in this chapter described by Kristine Barnett come from telephone interviews conducted on Dec. 22, 2014 (with occasional input from Jacob Barnett), and Oct. 13, 2015. The events in this chapter described by Becky Pearson come from a telephone interview conducted on May 29, 2015. Jacob's story was also drawn from Kristine Barnett's book,
The Spark: A Mother's Story of Nurturing, Genius, and Autism
(New York: Random House, 2013), Kindle edition; Jacob's TEDxTeen talk, “Forget What You Know”; and news reports, including “Groupon, Qatar, Jake Barnett,”
60 Minutes,
Jan. 15, 2012; Dan McFeely, “Genius at Work: 12-Year-Old Is Studying at IUPUI,”
Indianapolis Star,
March 20, 2011; Paul Wells, “Jacob Barnett, Boy Genius,”
Maclean's,
Sept. 1, 2013; Louise Carpenter, “When Jacob Barnett Was 3, His Mother Was Told That He Would Never Be Able to Read,”
Times (London)
, April 20, 2013; Eric Weddle, “Boy Genius' Celebrity Grows with New Book, Movie Deal,”
Indianapolis Star,
April 8, 2013; “13-Year-Old Beats the Odds,”
Frankfort (Ind.) Times,
Jan. 31, 2011; and Jacob's and his family's appearances on
Glenn Beck,
The Agenda with Steve Paikin,
and BBC World News.

“Night-night, baby bagel”
:
Kristine Barnett,
Spark,
53.

“Some of these things”
:
The Agenda with Steve Paikin.

“kindergarten boot camp”
:
Kristine Barnett,
Spark,
67, 80.

“he looked at me reproachfully”
:
Ibid., 119.

Sometimes numbers or words
:
Noam Sagiv et al., “What Is the Relationship Between Synaesthesia and Visuo-spatial Number Forms?,”
Cognition
101, no. 1 (2006): 114–28; Jamie Ward, Julia Simner, and Vivian Auyeung, “A Comparison of Lexical-Gustatory and Grapheme-Colour Synaesthesia,”
Cognitive Neuropsychology
22, no. 1 (2005): 28–41.

months occupy a spatial location
:
Daniel Smilek et al., “Ovals of Time: Time-Space Associations in Synaesthesia,”
Consciousness and Cognition
16, no. 2 (2007): 507–19.

One woman perceives August
:
Julia Simner and Emma Holenstein, “Ordinal Linguistic Personification as a Variant of Synesthesia,”
Journal of Cognitive Neuroscience
19, no. 4 (2007): 694–703.

The most common form
:
Julia Simner et al., “Synaesthesia: The Prevalence of Atypical Cross-Modal Experiences,”
Perception
35, no. 8 (2006): 1024–33; A. N. Rich, J. L. Bradshaw, and J. B. Mattingley, “A Systematic, Large-Scale Study of Synaesthesia: Implications for the Role of Early Experience in Lexical-Colour Associations,”
Cognition
98, no. 1 (2005): 53–84.

Researchers have picked up
:
Kylie J. Barnett et al., “Familial Patterns and the Origins of Individual Differences in Synaesthesia,”
Cognition
106, no. 2 (2008): 871–93.

Tests taken months
:
See, for example, Caroline Yaro and Jamie Ward, “Searching for Shereshevskii: What Is Superior About the Memory of Synaesthetes?,”
Quarterly Journal of Experimental Psychology
60, no. 5 (2007): 681–95.

Synesthesia is particularly interesting
:
See, for example, Julia Simner, Neil Mayo, and Mary-Jane Spiller, “A Foundation for Savantism? Visuo-spatial Synaesthetes Present with Cognitive Benefits,”
Cortex
45, no. 10 (2009): 1246–60.

“Every number or math problem”
:
“Groupon, Qatar, Jake Barnett.”

Over the years
:
See, for example, Laura Cesaroni and Malcolm Garber, “Exploring the Experience of Autism Through Firsthand Accounts,”
Journal of Autism and Developmental Disorders
21, no. 3 (1991): 303–13.

He also has Asperger's disorder
:
Simon Baron-Cohen et al., “Savant Memory in a Man with Colour Form-Number Synaesthesia and Asperger Syndrome,”
Journal of Consciousness Studies
14, nos. 9–10 (2007): 237–51.

a recent study found
:
Simon Baron-Cohen et al., “Is Synaesthesia More Common in Autism?,”
Molecular Autism
4, no. 40 (2013). See also Julian E. Asher et al., “A Whole-Genome Scan and Fine-Mapping Linkage Study of Auditory-Visual Synesthesia Reveals Evidence of Linkage to
Chromosomes 2q24, 5q33, 6p12, and 12p12,”
American Journal of Human Genetics
84, no. 2 (2009): 279–85.

wrote a story about Jacob
:
“13-Year-Old Beats the Odds.”

Two months later
:
McFeely, “Genius at Work.”

extracted the DNA
:
For information on the technique used to collect and extract the DNA, see Michael R. Goode et al., “Collection and Extraction of Saliva DNA for Next Generation Sequencing,”
Journal of Visualized Experiments
90 (2014).

“a big text file”
:
Chris Bartlett, telephone interview, April 21, 2015.

sought-after genetic mutation
:
For a discussion of the challenges in finding common language to describe genetic variants, see Roshan Karki et al., “Defining ‘Mutation' and ‘Polymorphism' in the Era of Personal Genomics,”
BMC Medical Genomics
8, no. 37 (2015). We use the term “mutation” here to mean a change in DNA such that, as the National Library of Medicine's
Genetics Home Reference
puts it, “the sequence differs from what is found in most people.”

There was also one clear hit
:
Joanne Ruthsatz et al., “Molecular Genetic Evidence for Shared Etiology of Autism and Prodigy,”
Human Heredity
79, no. 2 (2015): 53–59.

“We did gamble”
:
Chris Bartlett, telephone interview, Nov. 24, 2014.

The short arm of chromosome 1
:
Neil Risch et al., “A Genomic Screen of Autism: Evidence for a Multilocus Etiology,”
American Journal of Human Genetics
65, no. 2 (1999): 493–507; Mari Auranen et al., “A Genomewide Screen for Autism-Spectrum Disorders: Evidence for a Major Susceptibility Locus on Chromosome 3q25-27,”
American Journal of Human Genetics
71, no. 4 (2002): 777–90; Mari Auranen et al., “Analysis of Autism Susceptibility Gene Loci on Chromosomes 1p, 4p, 6q, 7q, 13q, 15q, 16p, 17q, 19q, and 22q in Finnish Multiplex Families,”
Molecular Psychiatry
5, no. 3 (2000): 320–22.

perhaps it's because there aren't many people
:
A couple of studies have examined the genetic roots of savant skills. See Erika L. Nurmi et al., “Exploratory Subsetting of Autism Families Based on Savant Skills Improves Evidence of Genetic Linkage to 15q11-q13,”
Child and Adolescent Psychiatry
42, no. 7 (2003): 856–63; and D. Q. Ma et al., “Ordered-Subset Analysis of Savant Skills in Autism for 15q11-q13,”
American Journal of Medical Genetics
135B, no. 1 (2005): 38–41.

Chapter 7: The Empathy Puzzle

In the late 1970s
:
Uta Frith, telephone interview, Aug. 4, 2015.

As Frith recalls
:
Ibid.; Frith, “Why We Need Cognitive Explanations of Autism.”

some studies put the figure
:
M. K. DeMyer, “The Measured Intelligence of Autistic Children,”
Journal of Autism and Childhood Schizophrenia
4, no. 1 (1974): 42–60. See also Uta Frith,
Autism: Explaining the Enigma
(Cambridge, Mass.: Basil Blackwell, 1989), 53–54, for a review of several studies that examined the relationship between autism and IQ.

This relatively narrow perception
:
For a review of the hunt for a cognitive explanation for autism, see Uta Frith, “Why We Need Cognitive Explanations of Autism.”

Most assumed
:
See, for example, Simon Baron-Cohen, “The Autistic Child's Theory of Mind: A Case of Specific Developmental Delay,”
Journal of Child Psychology and Psychiatry
30, no. 2 (1989): 285–98; and Uta Frith, John Morton, and Alan M. Leslie, “The Cognitive Basis of a Biological Disorder: Autism,”
Trends in Neurosciences
14, no. 10 (1991): 433–38.

The executive function theory
:
For an example of a relatively early paper on the executive function theory, see Sally Ozonoff, Bruce F. Pennington, and Sally J. Rogers, “Executive Function Deficits in High-Functioning Autistic Individuals: Relationship to Theory of Mind,”
Journal of Child Psychology and Psychiatry
32, no. 7 (1991): 1081–105.

According to the weak central coherence theory
:
For early works on weak central coherence, see Frith,
Autism;
and Uta Frith and Francesca Happé, “Autism: Beyond ‘Theory of Mind,'”
Cognition
50, nos. 1–3 (1994): 115–32.

“peculiar pattern”
:
Frith,
Autism,
174.

In the 1970s, two researchers
:
David Premack and Guy Woodruff, “Does the Chimpanzee Have a Theory of Mind?,”
Behavioral and Brain Sciences
1 (1978): 515–26.

In the early 1980s, two researchers
:
Heinz Wimmer and Josef Perner, “Beliefs About Beliefs: Representation and Constraining Function of Wrong Beliefs in Young Children's Understanding of Deception,”
Cognition
13, no. 1 (1983): 103–28.

To find out, Baron-Cohen
:
Simon Baron-Cohen, Alan M. Leslie, and Uta Frith, “Does the Autistic Child Have a ‘Theory of Mind'?,”
Cognition
21, no. 1 (1985): 37–46. For more on the history of this experiment, see Frith, “Why We Need Cognitive Explanations of Autism.”

Theory of mind research proliferated
:
See, for example, Simon Baron-Cohen et al., “Recognition of Faux Pas by Normally Developing Children and Children with Asperger Syndrome or High-Functioning Autism,”
Journal of Autism and Developmental Disorders
29, no. 5 (1999): 407–18; and Simon Baron-Cohen et al., “The ‘Reading the Mind in the Eyes' Test Revised Version: A Study with Normal Adults, and Adults with Asperger Syndrome or High-Functioning Autism,”
Journal of Child Psychology and Psychiatry
42, no. 2 (2001): 241–52.

A few
autism researchers had noted
:
See, for example, Michael Rutter, David Greenfeld, and Linda Lockyer, “A Five to Fifteen Year Follow-Up Study of Infantile Psychosis,”
British Journal of Psychiatry
113 (1967): 1183–99, 1187; and Leon Eisenberg, “The Autistic Child in Adolescence,”
American Journal of Psychiatry
112, no. 8 (1956): 607–12, 611.

“deficits in the normal process”
:
Simon Baron-Cohen, “The Cognitive Neuroscience of Autism,”
Journal of Neurology, Neuroscience, and Psychiatry
75, no. 7 (2004): 945–48.

In piloting this test
:
Simon Baron-Cohen and Sally Wheelwright, “The Empathy Quotient: An Investigation of Adults with Asperger Syndrome or High Functioning Autism, and Normal Sex Differences,”
Journal of Autism and Developmental Disorders
34, no. 2 (April 2004): 163–75.

“one of the key characteristics”
:
Pilar Rueda, Pablo Fernández-Berrocal, and Kimberly A. Schonert-Reichl, “Empathic Abilities and Theory of Mind in Adolescents with Asperger Syndrome: Insights from the Twenty-first Century,”
Review Journal of Autism and Developmental Disorders
1, no. 4 (2014): 327–43.

“marked by empathy deficits”
:
Jean Decety and Meghan Meyer, “From Emotion Resonance to Empathic Understanding: A Social Developmental Neuroscience Account,”
Development and Psychopathology
20, no. 4 (2008): 1053–80, 1053.

The first of these careers
:
The events in this chapter described by Jourdan Urbach come from an interview conducted on July 2, 2014. The events in this chapter described by Eric Drier come from a telephone interview conducted on June 4, 2015. Jourdan's story was also drawn from his TEDxYSE talk, “The Children of the Tenth Floor,” his Web site, concert posters, event notices, and news reports, including Marcelle S. Fischler, “At 11, a Violin Virtuoso and Author, Too,”
New York Times,
March 9, 2003; Gina Salamone, “Prodigy Jourdan Urbach Is Maestro of Kids' Charity Drive,”
New York Daily News,
Oct. 17, 2007; Lauren LaCapra, “Fiddle Prodigy Tops MS Show,”
New York Daily News,
Jan. 4, 2005; “Jourdan Urbach to Be Featured with the Park Avenue Chamber Symphony at Carnegie Hall, 10/27,”
Broadway World,
Aug. 1, 2013; Rochelle Kraut, “Jourdan Urbach: Our Youngest Researcher,”
Inside MS,
June–July 2007; Susan Jackson, “Q&A with Jourdan Urbach,”
Juilliard Journal,
Feb. 2011; Ula Ilnytzky, “Jefferson Awards 2012: Jourdan Urbach, Violin Prodigy, Among Recipients,”
Huffington Post,
March 6, 2012; “Jourdan Urbach,” YouTube video, 5:52, appearance on WTNH 8
Connecticut Style,
posted by “CT STYLE,” June 24, 2011; Jessica Guenzel, “One for the Books,”
Newsday,
Feb. 9, 2003; “Urbach Charity Performances,”
Roslyn News,
Nov. 3, 2006; Rita Delfiner, “Violanthropist,”
New York Post,
Aug. 11, 2008; Damian Da Costa, “With Prodigy Urbach, Park
Avenue Chamber Symphony Soared Saturday,”
New York Observer,
Nov. 24, 2008; Barbara Hoffman, “Fiddling for a Cause,”
New York Post,
Nov. 22, 2008; “Violin Virtuoso Jourdan Urbach Headlines April Benefit Concert at the Shubert,”
Stamford Plus,
Feb. 27, 2010; Britt Hysen, “Prodigy Violinist Jourdan Urbach Launches Video App,”
Millennial,
June 27, 2014; “More Intel Semifinalists from RHS,”
Roslyn News,
Jan. 23, 2009; “Way to Go! Jourdan Urbach of Roslyn High School,”
Newsday,
July 4, 2009; “The Next Wave,”
People,
April 12, 2004; Cynthia Daniels, “‘A Renaissance Boy,'”
Newsday,
Jan. 17, 2005; Corey Kilgannon, “With Dues-Paying Years Over, These Musicians Are Studying at Juilliard,”
New York Times,
Jan. 23, 2005; Rahel Musleah, “Jourdan Urbach, Raising Money for Kids' Health,”
Family Circle,
Feb. 2006; Jim Shelton, “Yale's Jourdan Urbach Raises Millions for Children's Charities,”
New Haven Register,
Dec. 15, 2010; “The 2007 Liberty Medals,”
New York Post,
Oct. 17, 2007; Jennifer Fermino, “Gala Salutes a Perfect 10,”
New York Post,
Oct. 18, 2007; Kristen Mascia, “Twenty Teens Who Will Change the World”; and Jourdan's television appearances, including on
CBS Sunday Morning,
Lou Dobbs Tonight,
Good Morning America,
Today,
and
Inside Edition
.