April
04
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Looking beyond biology: Autism in the workforce
“So, what’s the difference between the mind and the brain?”
I blinked, bewildered. Most of the time when I try to explain my research to non-neuroscientists (“I study how different types of neurons in the brain process visual information…”), I get polite nods and the occasional follow-up question about why that might be a useful thing to know. Here, this young woman – after already demonstrating that she knew where the visual cortex is in the brain (“close to the cerebellum!”) in addition to a few other crucial brain areas – had cut right to the heart of one of the most fundamental philosophical questions in brain science. It took me a moment to regain my verbal footing before I laughed, complimented her on her fantastic question and fumbled for an adequate answer.
That spunky, incisive young woman is named Jenny, one of seven contract employees with Salt River Project (SRP) in Phoenix, Arizona. She was hired by a new company called The Precisionists, Inc. (TPI) which specifically employs individuals with disabilities, many of whom are on the autism spectrum. TPI is one of a growing number of for-profit companies seeking not only to offer employment opportunities to adults with autism, but also to gain from the skills that many of these individuals have to offer. While many of these companies and organizations are doing incredible work, I confess that TPI holds a special place in my own heart; six months ago, my mom became employee #1 when TPI expanded into Arizona, and she acts as the project manager for TPI’s seven contract employees working at SRP, including Jenny.
Three years ago, I wrote another NeuWrite post about the history of autism and the latest research about its biological causes. For this year’s Autism Awareness Month, I want to address a different side of autism awareness – one that pertains less directly to the inner workings of the brain, but one of which I think anyone who studies or takes an interest in neurodevelopmental disorders such as autism should be cognizant. Especially in the scientific community, autism is often discussed as a primarily childhood disorder, and most research funds are directed towards issues of diagnosis and understanding its biological roots. Meanwhile, relatively little interest is paid to the 50,000 individuals with autism who enter adulthood each year [1]. I would like to share what I’ve learned about the issue of unemployment in adults with autism and highlight TPI as an exciting example of one type of initiative that might be used to combat this problem.
The Employment Challenge
While the issue of unemployment is a matter of concern for many people on and off the spectrum, the numbers do not favor everyone equally. A recent report found that a mere 14% of adults on the spectrum hold a paying job in their community. While a slightly larger percent are employed in facility-based settings, at least 60% of individuals are entirely unemployed or unpaid [2]. However, this report only surveyed individuals who had previously sought developmental disabilities services, and so these numbers are almost certainly underestimating the problem; other estimates are as high as 90% [3]. It may be surprising to some that young adults with autism have the lowest rates of employment among adults with other disabilities such as speech/language impairments, emotional disturbance, intellectual or learning disabilities [4].
So, what’s the problem? Of course, it’s complicated, but getting through job interviews seems to be one significant hurdle. Difficulty with social interactions is among the defining features of autism spectrum disorder, and anyone who has ever been on either side of an interview knows how, whether intentionally or not, it can be as much an evaluation of one’s social skills as one’s qualifications. But the social pressures don’t end with the interview; interactions with other co-workers, supervisors, customers, etc. are an essential aspect of virtually any occupation, so even those individuals on the spectrum who get past the interview may continue to face constant stresses that make it difficult to retain their positions. To make things even more challenging, over half of adults with autism have at least one additional mental health condition, such as anxiety or depression [2].
Nevertheless, many of these individuals are exceptionally skilled. It’s estimated that 44% of individuals with autism get at least some form of postsecondary education [5], yet the unemployment rate is still as high as 85% among college graduates [6]. Even those who graduate college and manage to get a job often settle for jobs well beneath their qualifications.
What can be done to help these individuals find well-paying, fulfilling work? Though there’s almost certainly not a one-size-fits-all solution, some companies like TPI offer exciting programs that are moving things in the right direction.
Specialisterne and TPI
Fifteen years ago, a man in Denmark named Thorkil Sonne came up with a solution to alleviate his own concerns about the employment prospects of his autistic son. Having a background in IT, he recognized that many high-functioning individuals on the spectrum have the necessary skills to succeed in the IT world, except most traditional companies aren’t structured to meet the needs of the average autistic adult. So, he founded Specialisterne (which means “The Specialists” in Danish) – a for-profit company that assesses, trains, and places individuals on the spectrum with companies who align with their core values.
Flash-forward to 2012, when Delaware Governor Jack Markell heard about Specialisterne and managed to convince Thorkil Sonne to bring his company’s model to the US. In Delaware, Specialisterne’s first partner was an IT company called Computer Aid, Inc. (CAI), run by a man named Ernie Dianastasis. After observing the positive impact that partnership had not only on Specialisterne’s employees but also on his own company, Ernie decided to leave CAI and self-fund his own business, The Precisionists, Inc. (TPI), with the mission of employing 10,000 people with special needs by 2025. TPI recently announced their expansion into Phoenix, Arizona, and that’s where my mom (and thus, indirectly, I) come in.
TPI makes itself more amenable to people on the spectrum in a few crucial ways. First, it seeks to assess skills and learning potential directly by running its own assessment program, created with Specialisterne, that utilizes Lego Mindstorms robots. This allows TPI’s evaluators to observe and assess how potential employees are able to tackle different sorts of problems, understand the supports that may be needed, and place them in an appropriate position in any of the businesses with which TPI is contracting (so far in Phoenix, TPI’s partners are SRP, the state of Arizona and Mobile Mini). In each of those businesses, there is a TPI project leader on-site (like my mom!) who is there to oversee the TPI employees’ work and provide them with the supports they need. Importantly, TPI doesn’t exclusively hire future programmers; instead, it works with its business partners to provide jobs that encompass a wide range of skills. For instance, of my mom’s seven employees, two are doing software testing while the other five are working on transferring files to an online database. As TPI aims to expand and provide more jobs and with more companies, it seeks to accommodate a high volume of individuals who fall on many points along the spectrum of disability.
Autism: not just a childhood disorder
Arguably, endeavors like TPI are needed now more than ever; not only are approximately 50,000 autistic teens becoming autistic adults each year, but even the baseline prevalence of autism – now estimated by the CDC to affect 1 in every 59 children in the US – has been on the rise.
These increasing diagnoses tend to overshadow the statistics about autistic adults. Consequently, much of the emphasis, particularly in scientific circles, has been placed upon finding autism’s cause and developing a cure. Of the $364,435,254 combined of federal and private funds that were poured into autism research in 2016, more than half of that went towards biology (35%) and genetics (24%) research [7]. We’ve learned a lot from this sort of research that is incredibly valuable: for instance, that autism is a prenatal disorder, caused by immensely complicated and heterogeneous interactions between prenatal environmental factors and genetic risk factors. But a definitive cause of autism remains elusive, due in large part to the famously heterogeneous nature of the disorder. For instance, while genetics research has uncovered a number of risk factors that are highly predictive of autism diagnosis, no single gene accounts for more than 1% of all autism cases [8].
So while the search for the cause (or more accurately, causes) of autism continues on, there are still millions of individuals already living with an ASD diagnosis. Yet, a mere 7% of research funds in 2016 went to Lifespan Issues and Services [7]. For many of these adults, how or why they have autism may not be their primary concern. Moreover, in a growing movement to embrace “neurodiversity”, some even reject the idea that autism is a disability that needs to be “fixed” at all [9]. While most would still agree that research into understanding the biological roots of neurodevelopmental disorders like autism is essential, figuring out how to help those who already have a diagnosis live a productive, happy life is no less important.
Meeting my mom’s team of “Precisionists” at SRP gave me a glimpse into the sort of impact that creative initiatives to employ individuals on the spectrum can have. One of her employees applied to literally 100 jobs unsuccessfully before he came to TPI. Another man, in his 60s, is a chess master who has struggled with employment, but is clearly a quiet leader to his younger co-workers. One young man, Zachary, can be overly detail-oriented but lights up the room with a smile whenever he talks about the Philadelphia Eagles. One of the software testers, Trent, told me that despite having extensive programming experience, he struggles with multiple disabilities in addition to autism that have contributed to his being in and out of jobs since 2002. But now, at SRP through TPI, he’s thriving and performing at the level of his SRP co-workers and is a valued member of the company’s Quality Assurance (QA) team. And then, of course, there’s Jenny, who is exceedingly smart but is learning for the first time how to operate in a professional work environment through TPI’s unique support system. TPI has already been hugely influential in these individuals’ lives, and it makes me hopeful for the wide-reaching impact that greater investment in and support for these sorts of initiatives can have on the lives of people already living with autism.
References:
[1] https://www.autismspeaks.org/autism-facts-and-figures
[2] Roux, Anne M., Shattuck, Paul T., Rast, Jessica E., Anderson, Kristy A. National Autism Indicators Report: Developmental Disability Services and Outcomes in Adulthood. Philadelphia, PA: Life Course Outcomes Research Program, A.J. Drexel Autism Institute, Drexel University, 2017. https://drexel.edu/autismoutcomes/publications-and-reports/publications/National-Autism-Indicators-Report-Developmental-Disability-Services-and-Outcomes-in-Adulthood/
[3] https://www.autismspeaks.org/employment
[4] Roux, Anne M., Shattuck, Paul T., Rast, Jessica E., Rava, Julianna A., and Anderson, Kristy A. National Autism Indicators Report: Transition into Young Adulthood. Philadelphia, PA: Life Course Outcomes Research Program, A.J. Drexel Autism Institute, Drexel University, 2015.
[7] IACC portfolio analysis report https://iacc.hhs.gov/publications/portfolio-analysis/2016/
[8] Yoo H. (2015). Genetics of Autism Spectrum Disorder: Current Status and Possible Clinical Applications. Experimental neurobiology, 24(4), 257–272. doi:10.5607/en.2015.24.4.257
[9] Silberman, S. (2015). Neurotribes: The legacy of autism and the future of neurodiversity. New York: Avery, an imprint of Penguin Random House.
Featured image: https://pixabay.com/photos/team-building-teamwork-together-3640329/
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