The Prodigy's Cousin (36 page)

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Authors: Joanne Ruthsatz and Kimberly Stephens

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a 2015 review
:
Brian Reichow, “Overview of Meta-Analyses on Early Intensive Behavioral Intervention for Young Children with Autism Spectrum Disorders,”
Journal of Autism and Developmental Disorders
42, no. 4 (2012): 512–20, 518.

The U.S. surgeon general
:
U.S. Public Health Service, Office of the Surgeon General,
Mental Health: A Report of the Surgeon General
(National Institute of Mental Health, 1999).

Autism Speaks
:
“Treatments & Therapies,” Autism Speaks, https://www.autismspeaks.org.

Not every kid who receives
:
Patricia Howlin, Iliana Magiati, and Tony Charman, “Systematic Review of Early Intensive Behavioral Interventions for Children with Autism,”
American Journal on Intellectual and Developmental Disabilities
114, no. 1 (2009): 23–41.

But there were still optimal outcome kids
:
Alyssa J. Orinstein et al., “Intervention for Optimal Outcome in Children and Adolescents with a History of Autism,”
Journal of Developmental and Behavioral Pediatrics
35, no. 4 (2014): 247–56.

Almost from birth, Ping Lian Yeak
:
The events in this chapter described by Sarah Lee come from e-mail. In addition, Sarah provided photographs, a transcription of Ping Lian's speech-language assessment dated Nov. 2, 1997, excerpts from her journal, and portions of her manuscript about raising Ping Lian. The events in this chapter described by Rosa C. Martinez come from a telephone interview conducted on March 5, 2015. The events in this chapter described by Laurence A. Becker come from a telephone interview conducted on Dec. 17, 2014. Ping Lian's story was also drawn from his Web site, marketing materials, and various news reports, including Mark White, “Island of Genius,”
Sydney Morning Herald,
April 12, 2014; Tan Sher Lynn, “When Love, Hope & Faith Endure,”
KL Lifestyle,
Jan. 2011; Shanti Ganesan, “Fate & Destiny,”
Marie Claire Malaysia,
May 2008; Angus Fontaine, “Ping Lian Yeak,”
Time Out Sydney,
Sept. 19, 2011; “The World Is His
Canvas,”
Passions,
Sept. 2009; Koh Soo Ling, “The Road Less Travelled,”
New Straits Times,
Jan. 16, 2005; Vivienne Pal, “Strokes of Genius from an 11-Year-Old Autistic Child,”
Star,
Feb. 3, 2005; Ruth Wong, “Through the Eyes of Love,”
Asia!,
May 17, 2009; “Brilliant Art of an Autistic Child,”
New Straits Times,
June 21, 2005; Arni Shahida Razak, “At the Art of Autism,”
New Straits Times,
Sept. 26, 2004; Andrew Priestley, “World's Eye on Autistic Artist,”
North Shore Times,
Jan. 23, 2009; Barbara Foong, “Different Strokes by Special Needs Persons,”
New Straits Times,
Dec. 10, 2003; Jenny Hatton Mahon, “Autism—The Art of Autism,” Weekendnotes.com, July 9, 2014; Jessica Lim, “Capturing Genius on Film,”
New Straits Times,
Sept. 11, 2005; and Ping Lian's television appearance on SBS News.

“Ping Lian presents with moderate”
:
Speech-language assessment, Nov. 2, 1997, document transcribed and provided by Sarah Lee.

“I tell myself”
:
Sarah Lee, journal entry, Feb. 2004, transcribed and provided by Sarah Lee.

“totally focused and full of energy”
:
Sarah Lee, excerpt from draft manuscript of book on raising Ping Lian,
“I Want to Be an Artist”: An Autistic Savant's Voice and a Mother's Dream Transformed onto Canvas.

“anywhere and everywhere”
:
Ibid.

“He seemed almost obsessed”
:
Ibid.

“deep in the eye”
:
Fontaine, “Ping Lian Yeak.”

One of his pieces
:
Dollar amount converted from Malaysian ringgit.

“imposing in their intricacy”
:
White, “Island of Genius.”

“vivid splashes of color”
:
Ibid.

“bold strokes and cheerful colours”
:
Wong, “Through the Eyes of Love.”

“Great artist”
:
“SBS News—Savant Artist in Spotlight,” YouTube video, 4:14, posted by “WorldNews Australia,” Sept. 28, 2011.

“become so meaningful”
:
Sarah Lee, e-mail.

Training the talent
:
There are several places focused on developing autistic strengths, such as the Tailor Institute in Missouri, Hidden Wings in California, and Strokes of Genius in New York.

It's an intriguing approach
:
A researcher in Australia, Trevor Clark, has been working on developing a train-the-talent curriculum; the results of his work are as yet unpublished. For a description, see Trevor Clark, “The Application of Savant and Splinter Skills in the Autistic Population Through an Educational Curriculum,” Wisconsin Medical Society, https://www.wisconsinmedicalsociety.org/.

newer models of behavioral therapy
:
For an overview of more play-based, child-driven approaches, see Laura Schreibman et al., “Naturalistic Developmental Behavioral Interventions: Empirically Validated Treatment for Autism Spectrum Disorder,”
Journal of Autism and Developmental Disorders
45, no. 8 (2015): 2411–28.

Though a tendency toward obsession is a widely recognized
:
See, for example, Klin et al., “Circumscribed Interests in Higher Functioning Individuals with Autism Spectrum Disorders.”

Kanner, for example, questioned
:
Kanner, “Autistic Disturbances of Affective Contact,” 243.

More recently, scientists considering
:
Richard C. Barnes and Stephen M. Earnshaw, “Problems with the Savant Syndrome: A Brief Case Study,”
British Journal of Learning Disabilities
23, no. 3 (1995): 124–26.

There's evidence that, in contrast
:
Klin et al., “Circumscribed Interests in Higher Functioning Individuals with Autism Spectrum Disorders”; Mercier, Mottron, and Belleville, “Psychosocial Study on Restricted Interests in High-Functioning Persons with Pervasive Developmental Disorders”; Turner-Brown et al., “Phenomenology and Measurement of Circumscribed Interests in Autism Spectrum Disorders.”

Several small studies
:
Mary J. Baker, Robert L. Koegel, and Lynn Kern Koegel, “Increasing the Social Behavior of Young Children with Autism Using Their Obsessive Behaviors,”
Research and Practice for Persons with Severe Disabilities
23, no. 4 (1998): 300–308; Mary J. Baker, “Incorporating the Thematic Ritualistic Behaviors of Children with Autism into Games: Increasing Social Play Interactions with Siblings,”
Journal of Positive Behavior Interventions
2, no. 2 (2000): 66–84.

others have found
:
Marjorie H. Charlop-Christy and Linda K. Haymes, “Using Objects of Obsession as Token Reinforcers for Children with Autism,”
Journal of Autism and Developmental Disorders
28, no. 3 (1998): 189–98; Marjorie H. Charlop, Patricia F. Kurtz, and Fran Greenberg Casey, “Using Aberrant Behaviors as Reinforcers for Autistic Children,”
Journal of Applied Behavior Analysis
23, no. 2 (1990): 163–81; Marjorie H. Charlop-Christy and Linda K. Haymes, “Using Obsessions as Reinforcers With and Without Mild Reductive Procedures to Decrease Inappropriate Behaviors of Children With Autism,”
Journal of Autism and Developmental Disorders
26, no. 5 (1996): 527–46; Laurie A. Vismara and Gregory L. Lyons, “Using Perseverative Interests to Elicit Joint Attention Behaviors in Young Children With Autism,”
Journal of Positive Behavior Interventions
9, no. 4 (2007): 214–28; Brian A. Boyd et al., “Effects of Circumscribed Interests on the Social Behaviors of Children with Autism Spectrum Disorders,”
Journal of Autism and Developmental Disorders
37, no. 8 (2007): 1550–61.

In 1944, in his first published paper on autism
:
Asperger, “‘Autistic Psychopathy' in Childhood.”

“the two real success stories”
:
Kanner, “Follow-Up Study of Eleven Autistic Children Originally Reported in 1943,” 143.

The savant expert
:
Treffert,
Islands of Genius
.

Temple Grandin
:
Temple Grandin and Kate Duffy,
Developing Talents: Careers for Individuals with Asperger Syndrome and High-Functioning Autism
(Shawnee Mission, Kans.: Autism Asperger Publishing, 2008).

Until scientists parse out
:
Stephen Bent and Robert L. Hendren, “Improving the Prediction of Response to Therapy in Autism,”
Neurotherapeutics
7, no. 3 (2010): 232–40; Happé, Ronald, and Plomin, “Time to Give Up on a Single Explanation for Autism.”

“The best way to better services”
:
Thomas Insel, “Director's Blog: Autism Awareness: April 2014,” National Institute of Mental Health, March 27, 2014, http://www.nimh.nih.gov/.

Chapter 11: The Next Quest

“divine inspiration”
:
Feldman and Morelock, “Prodigies and Savants,” 214.

Take Erich Fuchs and Stephen Crohn
:
For more information on Erich and Stephen, see Jesse Green, “The Man Who Was Immune to AIDS,”
New York,
June 13, 2014; Gina Kolata, “Sharing of Profits Is Debated as the Value of Tissue Rises,”
New York Times,
May 15, 2000; Elaine Woo, “Stephen Crohn Dies at 66; Immune to HIV, but Not Its Tragedy,”
Los Angeles Times,
Sept. 21, 2013; John Schwartz, “Stephen Crohn, Who Furthered AIDS Study, Dies at 66,”
New York Times,
Sept. 14, 2013; and “Surviving AIDS,”
Nova
, transcript of episode that aired Feb. 2, 1999.

“It was clear the minute”
:
Bill Paxton, telephone interview, April 23, 2015.

Paxton and his colleagues
:
Information regarding this study comes from William A. Paxton et al., “Relative Resistance to HIV-1 Infection of CD4 Lymphocytes from Persons Who Remain Uninfected Despite Multiple High-Risk Sexual Exposures,”
Nature Medicine
2, no. 4 (1996): 412–17; and a telephone interview with Paxton conducted on April 23, 2015.

The scientists used ever-increasing doses
:
In a later study, it was reported that it took roughly a thousand times more virus to infect Erich's and Stephen's cells than it did to infect the control cells; even with that amount of exposure, the virus took hold in only a small fraction of cells, and it failed to replicate. See Rong Liu et al., “Homozygous Defect in HIV-1 Coreceptor Accounts for Resistance of Some Multiply-Exposed Individuals to HIV-1 Infection,”
Cell
86, no. 3 (1996): 367–77.

“We repeated and repeated”
:
Bill Paxton, telephone interview, April 23, 2015.

Across three studies
:
Yaoxing Huang et al., “The Role of a Mutant CCR5 Allele in HIV-1 Transmission and Disease Progression,”
Nature Medicine
2, no. 11 (1996): 1240–43; Michael Dean et al., “Genetic Restriction of HIV-1 Infection and Progression to AIDS by a Deletion Allele of the CKR5 Structural Gene,”
Science
273, no. 5283 (1996): 1856–61; Michael Samson et al.,
“Resistance to HIV-1 Infection in Caucasian Individuals Bearing Mutant Alleles of the CCR-5 Chemokine Receptor Gene,”
Nature
382, no. 6593 (1996): 722–25.

Timothy was a twenty-nine-year-old
:
The events in this chapter described by Timothy Ray Brown come from telephone interviews conducted on April 3 and 22, 2015 (with occasional input from Dave Purdy). Events in this chapter described by Dr. Gero Hütter come from a telephone interview conducted on April 28, 2015. Timothy's story was also drawn from two articles he wrote: “I Am the Berlin Patient: A Personal Reflection,”
AIDS Research and Human Retroviruses
31, no. 1 (2015): 2–3, and “Cure: The Beginning of the End of HIV and AIDS,” in
How AIDS Ends: An Anthology from San Francisco AIDS Foundation,
ed. Reilly O'Neal (New York: Vintage Books, 2004), excerpt printed in
POZ,
Nov. 26, 2012; news reports, including Tina Rosenberg, “The Man Who Had HIV and Now Does Not,”
New York,
May 29, 2011; Regan Hofmann, “Patient No More,”
POZ,
June 2011; Apoorva Mandavilli, “The AIDS Cure,”
Popular Science,
March 7, 2014; and Mark Schoofs, “A Doctor, a Mutation, and a Potential Cure for AIDS,”
Wall Street Journal,
Nov. 7, 2008.

“functionally cured”
:
Schoofs, “A Doctor, a Mutation, and a Potential Cure for AIDS.”

The
New England Journal of Medicine
:
Gero Hütter et al., “Long-Term Control of HIV by CCR5 Delta32/Delta32 Stem-Cell Transplantation,”
New England Journal of Medicine
360, no. 7 (2009): 692–98.

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