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Harnessing the Power of Autism Spectrum Disorder

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Harnessing the Power of Autism Spectrum Disorder Jonathan Wareham and Thorkil Sonne Harnessing the Power of Autism Spectrum Disorder Innovations Case Narrative: Specialisterne This article was authored by Jonathan Wareham and Thorkil Sonne. In the article, references to “I” and “we” refer to the experiences and perspectives of Thorkil Sonne as the company founder, or Specialisterne as the collective organization. In November 1999, I had a meeting with my son’s psychologist that would change my life, and hopefully the lives of many others, permanently. The psychologist informed me that my third son had been diagnosed with Infantile Autism, one of the many variants of Autism Spectrum Disorder (ASD). After overcoming the ini- tial shock, my reaction was to do what many in my position do: consult books and Internet resources to learn more about autism in an effort to maximize the quali- ty of life for my son and family. Unfortunately, I was not pleased with what I found. It is estimated that ASD affects up to 1 percent of the world’s population. Of this 1 percent, only 6 percent have any form of gainful employment. So in addition to the first-order effects of ASD, second0order problems that are common in all groups of highly marginalized individuals, such as loneliness, depression, and drug abuse, are also frequent amongst those diagnosed with ASD. In fact, one heart- breaking statistic estimates that 40 percent of those with autism have no friends.1 The literature on autism emphasizes all the things that people with ASD can- not do. They are poor at social interaction; have difficulties understanding body language, facial expression, sarcasm, or other implicit communication; cannot contend with chaotic or turbulent environments and have difficulty working in teams; and are regimented and inflexible in their behavioral patterns and way of being. For me, this was that antithesis of everything that was being demanded in a labor market that celebrated teamwork, flexibility, mobility, and the ability to adapt to perpetually changing market conditions. Moreover, although we lived in Denmark where a relatively advanced social welfare system should provide for Jonathan Wareham is an Associate Professor of Information Systems and Director of Research at ESADE Business School, Ramon Llull University in Barcelona, Spain. Thorkil Sonne is the founder of Specialisterne. He was born in 1960 in a small town in the western part of Denmark and now lives close to Copenhagen. © 2008 Jonathan Wareham and Thorkil Sonne innovations / winter 2008 11 Downloaded from http://direct.mit.edu/itgg/article-pdf/3/1/11/704237/itgg.2008.3.1.11.pdf by guest on 26 September 2021 Jonathan Wareham and Thorkil Sonne such cases, I soon learned that “invisible” disabilities receive fewer resources, and what is allocated is almost exclusively for children. After the age of 18, the predom- inant response of the social system is to pay those with ASD to stay off the street and remain quiet. Understandably, I was very depressed, but also was haunted by a desire to define a world that would be more welcoming to my son: one that would embrace the world of ASD and speak its language; one, I soon realized, that few currently understood. Today, I am very proud to say that we have made some solid progress towards that goal. I founded Specialisterne (“The Specialists” in Danish) with the aim of identifying niches in the economy that can leverage the unique skills imparted to many of those with ASD at fully competitive market terms. Specialisterne employs over 50 consultants in areas such as software testing and data validation; over 75 percent of them are diagnosed with some form of ASD. We are the first organiza- tion that deliberately celebrates the strengths of autism (extreme attention to detail, excellent memory, and ability to concentrate and work very systematically) and harnesses these characteristics to perform specific tasks for prominent clients in the high-tech industry. While the journey of building Specialisterne has been arduous for many obvious—and less obvious—reasons, I am constantly encour- aged by many individuals and families living with ASD, as well as policy makers at local, regional, and national levels that see our company as a model of sustainable inclusion for many related groups of marginalized individuals. HISTORY OF SPECIALISTERNE In 1996, I was working as an IT manager for a large telecommunications operator when my third son was born. At first, nothing appeared unusual with him. However, when the boy was two years old, some of his caregivers noticed problems in his speech and delayed development of social skills. We began to consult with pedagogues, counselors, and psychologists to find explanations of what was hap- pening with him. When they informed us that he had Autism Spectrum Disorder, a lifelong handicap with no cure or treatment, we quickly realized that all our plans needed to change. It was especially heartbreaking to watch our child constantly experiencing hardships in social interactions. Amid the difficulties, there were occasional startling surprises that suggested he had unusual capabilities. One day, for example, when he was seven years old, he began drawing a very elaborate diagram. At first, we couldn’t figure out what it was, but after a while it took on a familiar shape. Gradually, it formed into a map of Europe, but it was thick with perplexing numbers that meant nothing to us. Later and completely by coincidence, while looking through the Book of European Road Maps, we stumbled upon the inspiration for our son’s drawing: the index page for the map book. The numbers indicated pages in the book on which more detailed maps of a region appeared. Our remarkable child had reproduced the entire numbering scheme from memory, without a single error (see Figure 1). 12 innovations / winter 2008 Downloaded from http://direct.mit.edu/itgg/article-pdf/3/1/11/704237/itgg.2008.3.1.11.pdf by guest on 26 September 2021 Specialisterne: Harnessing the Power of Autism Spectrum Disorder Figure 1. An Illustration of the Abilities of People with Autism Spectrum Disorder The figure shows an example of the abilities of some people with ASD. The sketch on the left-hand side of the figure was drawn by Thorkil Sonne’s young son at the age of seven. The right-hand side is the index page of the Book of European Road Maps. Thorkil’s son made the sketch from memory. Only later did Thorkil find the book on the shelf and recognize that the drawing was derived from it. The numbers are refer- ences to the other pages in the book. Thorkil found no errors in comparing the sketch with the actual index page. This sketch reinforced Thorkil’s conviction that people with ASD have skills that deserve to be made visible and accessible to society. Source: Thorkil Sonne It soon occurred to me that many capabilities that our son had might be use- ful in other contexts. Reproducing the diagram so accurately required strong memory, a capacity to concentrate on detail, and motivation to follow an exact standard. These abilities and inclinations existed already in our son to a remark- able extent for such a young child. Moreover, they mapped well to the skills we look for in professional environments from certain employees, especially software and system testers. I therefore decided to start a new company focused on software testing, in which the majority of employees would be people with ASD, remortgaging our home to finance the start-up. Many IT systems integrators and other service com- panies performed testing as part of a range of offerings to other companies, and innovations / winter 2008 13 Downloaded from http://direct.mit.edu/itgg/article-pdf/3/1/11/704237/itgg.2008.3.1.11.pdf by guest on 26 September 2021 Jonathan Wareham and Thorkil Sonne almost all companies did some testing as part of their system development or installation activities. Software Testing: Rigorous Routine and Exacting Thoroughness Software testing is a process often discounted when talking about writing software. But, in fact, it is a critical phase in software development that often constitutes up to 30 percent of resource consumption in the overall development process. In gen- eral terms, software testing seeks to ensure the overall quality of the written soft- ware. However, what constitutes quality will vary for the particular software appli- cation. For example, security issues are far more important for banking software than for gaming software, so the emphasis of the overall software- testing regime will vary with the I didn’t want to appeal to my needs of the application and the user organization. Usually, the client’s sense of charity. I earlier a defect can be found in wanted to offer a best-in-class the overall development process, the cheaper it is to correct. In service, and I intended to pay fact, many postulate a logarith- our employees industry mic relationship between the point in the process in which the competitive wages. error is detected and total cost to correct. Hence, software testing is not just about testing completed code, but rather is a process that should be highly integrated throughout the development process, beginning with user requirement definition and product design. In mature testing programs, analysts and developers begin creating test plans at the same time that they design the software itself, at moments when design intentions, and thus expected outcomes, are closest in mind. In immature testing organizations, in contrast, testing happens as an afterthought, after the software is running in early versions. Because testing is often actually carried out only after the software in some form is working, the testing stage of software implementation is often compressed.
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