An Autism Primer
While 1 in 68 children have autism , there is still much debate about the causes of autism, although it is likely that both genetic and environmental factors are at play. Autism is described as a “spectrum” representing a huge breadth of severity across several different groups of symptoms. Individuals with mild symptoms can go on to achieve considerable personal success, whereas those most severely affected often require 24-hour care.
An Emerging Trend…
While frequent attention to autism in the media brings light to the topic, in recent months, there has been a less well-publicized, yet emerging trend: technology companies big and small have been stepping forward to focus their resources on projects to help individuals with autism. They are often well-positioned to do so given their immense technical expertise, deep pockets, and highly talented workforces. Despite these fantastic strengths, tech companies need to have a real-world understanding of the challenges faced by people with autism, in order to achieve success in practice. Recognizing these limits, companies have started to strike up collaborations with autism advocacy groups, people with autism, and professionals specifically trained in autism.
The growing number of people now diagnosed with autism has generated huge demand for technology, products, and other services to help support their needs. The upcoming Autism Investment Conference (AIC, March 10-12 in Boston), really highlights how eager businesses and investors are to learn about the opportunities in this rapidly expanding market. As a nod to the growing influence of technology in autism, the conference will be immediately followed by a half day “autism app pitch competition” organized by Google and Autism Speaks. The competition will give up-and-coming app developers an opportunity to showcase their most promising technologies for autism.
BIG Data + BIG Analytics
A growing number of high-profile healthcare projects are utilizing techniques involving huge databases of medical information.The projects try to analyze the data in a way that would elucidate findings that would otherwise not be detected using traditional, smaller size clinical studies. However, data sets of this immense size require special computing expertise to analyze and store information, as they are too large and too complex for conventional software and hardware. This is where the biggest technology companies shine. They have the resources, procedures, and data scientists to store and analyze huge data sets, as well as the expertise and systems to report and use the insights these analyses generate. This is incredibly important given that big data may include hidden or subtle associations that could be scientifically and medically important to understanding a multifactorial condition like autism, which may be invisible to professionals or even traditional clinical studies.
Putting Autism genetics in the “Cloud”
One of the most prominent partnerships between autism and tech organizations emerged when Autism Speaks announced in December 2014 that it will join with Google to form a groundbreaking genetics research program. The program is called MSSNG (pronounced MISSING), a name that highlights how little scientists know about the causes of autism. MSSNG seeks to create a database of 10,000 genomes (the entire genetic code) of people with autism. The 10,000 genome target is just the beginning for this ambitious program. Google will provide the technical resources to host the information in a virtual data “cloud”, and Google Genomics will create a unique interface where researchers around the world can access and analyze data for free. The first phase of the project has been successful with 1,000 sets of genetic code already uploaded, and the MSSNG project has already yielded a publication in one of the most widely-cited journals, Nature Medicine.
Science Driven Autism Apps
One day genetic research may help create specific treatments for people with autism, but what about people with autism who need help today? How do we help them achieve their full potential at school, improve their language skills, enhance their ability to read social cues, and generally work toward self-sufficiency and happiness? These are all valid concerns that are often highlighted in people with autism, and significantly impact their day-to-day interactions. A few forward-thinking technology companies have recently taken on this immediate need by creating solutions aimed to help people with autism. Samsung, a Korean manufacturer of many popular computing devices and electronics, has joined forces with Autism Speaks of Canada to produce an app called “Look At Me” for children with autism. The app aims to improve a person’s ability to make eye contact, and is available for Android devices. Developed with the help of a team of psychologists and psychiatrists, Samsung shared that it is testing the application’s effectiveness by conducting further research. The app collects data on a child’s progress with eye contact, and parents receive feedback on their child’s progress, based on the recommended usage of 15-20 minutes a day.
What if, instead of looking down at a tablet, a child could learn social skills and improve eye contact while still looking up and out into the world? That is central to the mission of Boston-area startup, Brain Power. Their “Empowered Brain” software is designed for the unique capabilities of heads-up computer interfaces like Google Glass. Google Glass? Isn’t that a “dead” technology, you might ask? Well, according to WIRED, companies like Brain Power are helping to keep the interest in Glass alive, as the Glass project has graduated to the next level in Google’s long-term vision for wearables. According to Autism Speaks, Brain Power is running a beta-testing program, with clinical trials beginning imminently. It will be exciting to see if this futuristic technology can measure the symptoms of autism objectively and help coach children on the spectrum toward self-sufficiency.
Startup Companies seeing the potential in people with autism
People with autism may demonstrate exceptional talents, despite the varying challenges they face. Some companies have found that these talents can be very desirable for their work environment. ULTRA, a technology company in New York focuses on hiring people with autism to conduct high quality software testing services. According to the company, one third of people with autism may have heightened abilities in pattern recognition, focus, and attention to detail. The company has developed unique ways of recruiting and training these highly talented individuals with autism. While these skills make some individuals well suited to becoming software testers, 80 percent of people with autism remain unemployed. In recognizing the talents and abilities of all people with autism, it is hopeful that other companies may be able to provide other opportunities for people with autism to thrive.
Involving People with autism, and reaching marginalized communities
I am hopeful that these collaborations will be fruitful, and give rise to future initiatives. It is important, however, to ensure that people with autism are given a direct voice in these programs. People with autism actually represent a highly diverse group of individuals, and their input could dramatically increase the real world usefulness of new technologies. Dr. Temple Grandin, a leading autistic advocate and professor told me: “It’s time people see the potential in the autism community, and I am talking about investment and business potential. Remember, parts of Silicon Valley wouldn’t exist without people with autism.”
Many people with autism from disadvantaged or minority communities already face substantial barriers to obtaining services, and new technologies may be instrumental in overcoming these hurdles. But how do we ensure that new technological advances are accessible to people with autism across the breadth of our communities? New technologies may initially be expensive, and may be out of reach of many people. When I recently raised this issue with Areva Martin, an award winning Harvard-trained attorney, and the President of the Special Needs Network, she had some useful insights, “As tech companies begin to focus on the autism community, I hope that resources will be allocated for those individuals who live in underserved and marginalized communities who don’t have the financial wherewithal to access technology. For the newly created autism apps and other forms of technology to impact these individuals, tech companies have to be creative and find ways to partner with those organizations and groups who work closely with low and moderate income children and adults with autism.” I completely agree with Areva, and believe that if technology is accessible to the broader community, it can have an empowering effect on some of the more vulnerable members of our society.
Investing in the future, delivering in the present
It is really exciting to see organizations having the insight to invest time and energy into nurturing relationships with technology companies. Rob Ring, the Chief Science Officer at Autism Speaks, believes that encouraging business investment in the autism marketplace is a crucial next step, and one that can be fueled by events like the upcoming Autism Investment Conference. “Technology is a space Autism Speaks has been actively involved in for years” Ring told me, and “We believe there is nothing else like the Autism Investment Conference out there right now specifically trying to increase interest and investment in a rapidly growing autism marketplace. Our collaboration with Google to produce the ‘Pitch Playground’ also offers a great angle to the tech side of the event.” Brain Power Founder Ned Sahin agrees with Ring and brings a sense of urgency to the situation: “We cannot wait. People want solutions now. If we can radically transform so many other industries with technology, then we can utilize the hardware and software to empower people with autism. We must give them practical tools to climb from potential to reality.”
Acknowledgement. Thank you to Taylor McMahon, Emerson College, for her help in researching topics relevant to this piece. Arshya Vahabzadeh is an associate of Brain Power LLC.