Chapter 14
Autistic Abilities—Denmark
I don't consider them autistic—they are more like specialists. They have very special qualities that make them focused, detail-oriented, and persistent. Wouldn't we be rewarding these qualities in a person who wasn't labeled as autistic? Why don't we just understand people for what they can do rather than label those who are not like us?
—Thorkil Sonne
THORKIL SONNE WAS DEVASTATED WHEN HIS SON LARS WAS diagnosed with autism at age three. Thorkil was, by his description, a traditional family guy having a traditional life who in his spare time did quite a bit of local volunteer work. Life was good and he was cruising along in fifth gear—until the day his youngest son was diagnosed. It was a life-changing experience for him and his wife. Thorkil suddenly realized that Lars would not have the same chances in life as his older siblings. He pictured Lars as an adult and asked himself, “What will make Lars happy when he gets older; when my wife and I are too old to care for him and carry on his fight? What would it take for him to have a good life?”
It's Not Quite Like the Movies
Thorkil knew nothing about autism except for what he had seen in the movie Rainman with Dustin Hoffman and Tom Cruise. He surmised that Hollywood had trumped reality; most everyone who has seen that movie thinks that most people with autism have a skill-set and personality similar to the lead character. In the real world very few people have such extraordinary skills, and certainly less than 1 percent of all people with autism have them. As Thorkil immersed himself in learning about the disorder, he and his wife noticed that in all the books they were reading the prevailing view was that Lars would never get a job and would always have a problematic life. There were no books that told the Sonnes if or how Lars could fit in, only how he would not.
The autism spectrum varies from the severest conditions, where those with the disorder cannot live independently, to the mildest form (called Asperger syndrome, or Asperger's), which was not defined as a disorder until 1994 and can seem little more than extreme social awkwardness. Autism leads to difficulties in relationships, communication, understanding of social subtleties (such as irony and sarcasm), tics and repetitive motions, and a need for comfort and safety in the form of routines and rules and mellow, tranquil environments. Autism is estimated to affect about 1 percent of the population, and attention deficit hyperactivity disorder (or ADHD) may affect another 3–4 percent. Imagine these numbers and the people they represent on a world scale and you can quickly grasp the scope of the challenge worldwide for individuals, families, and society.
As Thorkil and his wife tried to deal with their son's situation, Thorkil realized that Lars's diagnosis had not changed who he was—he was still loving, adorable, and caring, but without friends. The diagnosis meant nothing to him, but to his parents it was a different matter. They noticed that the strain of dealing with Lars's future was filling up more and more time, so they decided that Thorkil would quit his job as a technical director of an IT technology firm to learn as much as he could about how best to help his son not only survive but—if possible—thrive.
Thorkil got involved in the autism society and soon became president of a local branch, a post he held for three years. He absorbed everything he could about the Danish welfare system and supportive nonprofit organizations and also learned from any programs, presentations, or people who could provide answers or inspiration. He found that though there were many welfare support tools for use in Denmark, they were all constructed on the basis of visible disabilities—not invisible ones. He quickly realized that welfare employees were rewarded for not taking risks; the only way they could do their jobs well was to do the same things they have done forever, over and over again. Innovation could never be encouraged in the system if things were to go on as they were. It seemed that no changes would come from the authorities or the traditional labor market because they were both locked into conventional thinking. They would never see Lars as having capacities instead of deficits.
All of Thorkil's research and his work with the autism society influenced his personal framework as well and the way he now related to differently abled children, adults, and their parents. He learned a lot about respecting people and life. Before, if he was at the grocery store and there was a woman with a child who was behaving rather badly, he would internally blame her for not raising the child well or for not being effective at making the child be quiet. Now he considers how brave the mother is and really empathizes with her difficulties and embarrassment. He feels like he wants to go give her a hug, whereas before, his sentiment was anything but.
Going from Fifth Gear to First
Before becoming conscious about autism, Thorkil worked at a telecommunication company that was highly involved with computer systems. As he read about autism, he realized that some of the very talented people he had seen working on computers had exhibited some autistic-like characteristics themselves. They were extremely motivated, particularly attentive to detail, with keen memories and high levels of concentration. They wouldn't stop until they had checked out every detail and were sure everything worked exactly the way it should. They didn't seem to be particularly skilled socially and kept pretty much to themselves. In the right situation with the appropriate job, they seemed to excel. So Thorkil asked himself, “Why couldn't someone labeled as autistic, who had the exact same skill sets, excel under those same conditions?”
To test out his hypothesis, Thorkil set up a market-based company that would fill the niche for consultants who could test new computer software. There seemed to be a large customer base and out of this would come lots of options for people like Lars to excel in the labor market. Specialisterne (The Specialists) was created in 2004. In 2008 he founded the nonprofit Specialist People Foundation with the goal of enabling employment for a million autistic adults throughout the world.
Thorkil is crystal clear about his mission. In simple terms it is an employment agency that contracts with businesses to supply specialized computer consultants who are assessed on their technical rather than social skills. As Thorkil told the Harvard Business Review, “This is not cheap labor, and it's not occupational therapy. Our consultants simply do a better job.”1
A Good Idea That Fills a Need Markets Itself
The reason for this superior performance seems to be that Specialisterne is a mixture of idealism and business, established on a concept so strong that Thorkil says the company was able to fend for itself on market terms right from the beginning:
No one has ever done it before—so we couldn't read how to do it. On the other hand that has also meant that we at no time have been bound by how things are usually done—we have had free rein to think outside the box.
Most autism therapies focus on molding a person to fit into social situations. Few make reverse adaptations: changing circumstances and perceptions in society at large and in the working world to suit the needs of people with autism that allow them more and better opportunities for integration in the wider world. Thorkil assesses and trains not only his consultants (who are hired on a fixed contract basis) but also the potential employer to make sure that the workplace environment is responsive to the needs of his consultants.
Since the majority of Specialisterne consultants work on site at the client's facilities, creating a comfortable working environment is conducive to productivity and improved behavioral function. In a relaxed setting, things viewed as autistic traits become minimized and just need a bit more understanding. Though Thorkil is quick to add that “people with autism did not invent open space offices,” constructing a culture that caters to the requirements of autistic workers is not tremendously different from best practices in any office environment. It incorporates structured working methods, clear instructions, limited stress situations, and working hours adjusted to individual capacities. On Specialisterne's end, during and after the initial five months of intensive employee training, consultants receive ongoing personal support, personalized training, and skill development programs to help ensure a comfortable transition into each new consultation project. The training develops and builds not only market-related abilities but those relevant to daily life as well.
Many of the Specialists express almost identical sentiments to Danish consultant Steffen Møller Pedersen's: “I have a good life now! Through Specialisterne, I have acquired good professional skills, which I really appreciate, and they have also helped to improve my social skills!”
From the client's side, when a company begins to work with Specialisterne, a point of contact is appointed who is empathetic to the skills and limitations of autistic people and trained by Specialisterne in the most effective practices for working with them. Other company employees are given a short introduction to autism, and things to keep in mind when working with autistic people. Several client companies have reported, perhaps not surprisingly, that their employees who are in frequent contact with the autistic software testers have begun to speak more clearly and directly with one another as a result of working with people who require a very explicit style of communication.
At the same time, the client very frequently begins to experience improvements in communications and increased understanding among its other employees as a result of working with Specialisterne's specialists. Says Henrik Nesager, Software Platform Management Service, IBM:
Working with two interns from Specialisterne, I learned that accommodating their need for well-defined instructions and ensuring optimal work conditions from the start increases their productivity and the quality of the end-result considerably. Teaming up with them was an eye-opening experience and I now use this knowledge with great success when working in other teams. This has also led to an increased satisfaction amongst team members.
From Handicap to Competitive Advantage
Thorkil Sonne is transforming the way society perceives autism—from viewing it as a handicap to recognizing that it can create a competitive advantage. Thorkil's goal is to take people from an unwanted to a wanted place. He calls the journey “The Dandelion Model”:
Many people consider a dandelion a weed. But I see a weed as nothing but a plant in an unwanted place. If you take the plant from an unwanted place to a wanted place—you turn the weed into an herb. That's the situation for dandelions—and that's the situation for many “specialist” people who do not fit into the mainstream of our society. Place them somewhere where they fit in and they turn into beautiful beings.
As Specialisterne grows, so do the multiple requests to replicate the model in other cities around the world. Thorkil has been contacted by people in sixty countries, and from twenty-nine states in the United States alone. He was starting to find it impossible to run Specialisterne and spread the model at the same time. After all, how was he to reach his goal of a million global employment placements for “special people” if he could not first attract and then convince others that his system was indeed replicable, functional, successful, and worthy of adoption?
Thorkil's trade-off was whether to continue to grow his own social enterprise or reach his million-placement goal: “I have learned that if you want to scale, you have to let go, you have to inspire and not keep on designing.” He decided to grow the model by creating an NGO and grow Specialisterne's financial sustainability by selling its knowledge. To do that, he created the Specialist People Foundation, where other changemakers could learn the management model and earn a Specialisterne license. What he is ultimately conceptualizing is creating an open-source knowledge community that brings everyone into a global network of collaboration that could trigger millions of ideas based on his philosophy. The outcome could be additional adaptations much better suited to local communities than Thorkil and his team could come up with on their own.
Thorkil is not at all interested in building big organizations. He just wants to find local social enterprises or social entrepreneurs who are not simply interested in using the knowledge base but committed to removing the divide between autistic people and society. This can happen if each licensed organization works to inspire others to adopt, adapt, replicate, and spread the model. He knows that in all companies and in all government agencies there will be employees who are also parents—parents of children with all forms of autism, ADHD, and other learning disabilities. Once they are made aware of this life-changing program, he intuits that their inspiration and energy will become a mobilizing force; they will be an army of catalysts embedded in each of their organizations that will make sure that this program succeeds and that all the differently abled specialists have a working environment suited to their own needs.
Thorkil can clearly see the path of mobilization: from Specialisterne to the licensing of social enterprises to support from employed parents of autistic adults (championing the model to their companies and offices), to mobilization of a global movement. He already knows close to twenty organizations that have been inspired by Specialisterne, and with steadfast faith, he envisions hundreds more spreading across both developed and developing countries.
When the need for special help arises, parents tend to get extremely protective toward their kids. As the kids grow older, the parents realize that they will have to let go—and at the same time they are afraid of the possible consequences. It is a cruel choice. By helping the adult children get employment and realize their potential, Thorkil hopes he can help the parents let go with a good conscience. Without this stepping-stone, children with autism will end up living with their parents until their parents can no longer take care of them—and then what?
Lars is only fourteen now, but if he can look forward to the prospect of a job where he would be appreciated and respected for his particular personality, Thorkil knows that he and his wife will be able to retire with diminished concerns.
As our autistic employees go through the training process and then become employed, I see how they grow in self-esteem. They are like computers that need rebooting. It's the most motivating part of my work and a magical moment for me, especially as the father of a boy with autism.