COVID-19 Q&A: Dr. Lawrence Fung on Impacts on the Neurodiverse Community
As scientists learn more about the novel Coronavirus, the consensus is that even with more effective treatments and possible vaccines, COVID-19 will likely be with us for a long time to come. New ways of working and learning will continue to evolve, and the many varieties of talents and skills will need to be accommodated for full inclusion. That includes the neurodiverse community. For this insight we turn to Dr. Lawrence Fung, Director of the Stanford Neurodiversity Project (SNP), and the Adult Neurodevelopment Clinic, as well as Assistant Professor of Psychiatry and Behavioral Sciences.
Between the anxiety the virus has caused, the social distancing and isolation steps to control its spread, and the disruption in work, school and daily routines, which is the most difficult for those who are neurodiverse?
Dr. Fung: The pandemic has affected the neurodiverse community in all sorts of ways. People with different neurodiverse conditions (e.g., autism, dyslexia, ADHD) have various challenges during this unprecedented time. All of what you mentioned can be very difficult for neurodiverse individuals. I do not think there is a specific aspect that is most difficult for neurodiverse individuals. The anxiety caused by COVID-19, the physical distancing, and disruption of daily routines are intertwined. Together with other factors involved in the pandemic, they have caused a lot of new challenges for the neurodiverse community.
Anxiety is a very common co-occurring condition in the neurodiverse community. About 20 to 30% of male adults on the spectrum have anxiety disorder. Females with autism spectrum condition have even higher rates of anxiety. The prevalence of anxiety it’s up to 40% in females on the spectrum. In some clinics the prevalence of anxiety in patients on the spectrum is even higher (up to 80 or 90%). For both dyslexia and attention-deficit hyperactivity disorder (ADHD), the prevalence of anxiety is about 20% or so.
During the pandemic, anxiety can be triggered or worsened by a variety of reasons. The rise in infection of COVID-19 as well as the deaths it has caused have affected millions of people in the world. Some neurodiverse people are more directly affected by the virus. The anxiety can also be associated with the news they see from the media. Because of the economic downturn associated with the pandemic, a lot of neurodiverse individuals have lost their jobs. Many are still looking for jobs, but they are often times not able to find them. All of this can be causing a lot of anxiety.
On a practical level, people on the spectrum can be also affected by the need to change the daily schedule and what they are supposed to do in public. Structure is everything for a lot of people on the spectrum. When the structure is disrupted and if there is no new structure in place, a lot of anxiety can build up. Many people on the spectrum have hypersensitivity to smell and pressure. These individuals often find it difficult to keep their masks on. This challenge can be trickier to handle for those with co-occurring intellectual disability. This creates potential issues if they need to be in public places, especially in certain cities and states where wearing mask is mandated. Wearing mask can also make communication more challenging. In addition to the muffled voice, another source of difficulty can be related to the need to see mouth movements in helping some neurodiverse individuals in their receptive communication with others.
Perhaps you could delve further into the social distancing aspect of COVID-19 prevention. For neurodiverse individuals, social interaction and interpersonal communication can be their greatest challenge. Is the trend to work and be schooled at home a positive, a relief? Or, is it a setback to be without those daily interactions?
Dr. Fung: It is true that neurodiverse individuals struggle with social interactions, especially for those on the autism spectrum. Physical distancing significantly reduces, and for some, eliminates social interactions. During the shelter-in-place period, most people need to rely on other modes of communication, such as videoconferencing, audioconferencing, sending emails, texting. Neurodiverse individuals may welcome the reduction or elimination of in-person social interactions. They may also like the other ways of communication as they are more comfortable with them.
In many organizations, working at home is considered an accommodation for employees. Because of COVID-19, working at home has become the norm. Thus, for neurodiverse individuals who have benefited from working at home, the trend to work at home is certainly a relief for them. The culture change levels the playing field, which may be a good thing for some members of the neurodiverse community.
It is worth noting that not everyone on the spectrum will benefit from working at home. Like everyone, neurodiverse individuals face potential challenges when their home settings are not ideal for work. For example, many people need to share space with their family members at home. It can be more distracting at home, compared to the usual place they use at school, public library, or their assigned or shared space at work. An added challenge for neurodiverse parents is the need to take care of their children while working at home.
There is a myth about individuals on the spectrum not wanting social interactions. Many people on the spectrum yearn for social interactions but it is common for them to face challenges in this area. Especially for those who have worked hard to establish their social support at school or at work, physical distancing can certainly be a setback for them.
In a more general sense, depression and anxiety are very common in the neurodiverse community. The social isolation that can result from physical distancing has also caused worsening depressive and anxiety symptoms for many people in the neurodiverse community. For example, dyslexic individuals tend to be good at social interactions. When their daily routines involving in-person social interactions are disrupted due to physical distancing, many people with dyslexia have found it demoralizing and depressing.
As how, and where, we work and learn changes with the progress of the virus, what would be the optimal scenario for continuing the progress made on embracing the skills and talents of neurodiverse individuals?
Dr. Fung: To embrace the skills and talents of neurodiverse individuals, I have been advocating for Strengths-Based Model of Neurodiversity in the past few years. This model encourages neurodiverse individuals to build their identity based on their strengths and interests instead of their challenges. Before the pandemic, our group has launched two main programs: Neurodiversity at Work Program (NaWP) and Neurodiverse Student Support Program (NSSP). The NaWP is a specialized employment program that provides structured, strengths-based support to neurodiverse employees and job seekers, as well as employers who are committed to maintain their workplaces neurodiversity-friendly. The NSSP is a specialized, comprehensive student support program that supports neurodiverse students at Stanford though peer mentoring, counseling, psychoeducation, mental health support, and other collaborative efforts. While a lot of what we do used to involve in-person interactions in individual and group formats, we have successfully transitioned these interactions to virtual formats. For example, after the pandemic started, we have been able to facilitate placements of neurodiverse individuals to new full-time positions through virtual interactions. As part of the NaWP, we are running the first virtual Neurodiversity Design Thinking Workshops this August and September. In the NSSP, we have also created an online version of transition orientation for incoming neurodiverse Stanford freshmen.
As a physician, I predict that COVID-19 is not going to go away soon. Its effects on the community are likely to linger even when we have a vaccine in the next year. Therefore, we will expect that there is still going to be anxiety related to the pandemic in the next couple of years to few years. A lot of large companies have already announced that their employees will work at home until 2021. With this in mind, my group who is running the Stanford Neurodiversity Project has adapted to the current situation. For example, we will host our Stanford Neurodiversity Summit completely virtually this October. If anything, the virtual format is beneficial because we are able to invite distinguished speakers from around the country and the world. Furthermore, I predict we will reach a wider audience because of the larger capacity we can allow with a virtual conference. This summer, we are running our first virtual Neurodiversity high school camp (Stanford Neurodiversity Project - Research, Education, and Advocacy Camp for High Schoolers (SNP REACH)). We attracted over 350 high school students to apply for the camp. We selected 40 students from all over the country to participate in this camp. If we were to run the camp in person, we will not be able to reach as many people from far places.
The bottom line is that the advocacy work on Neurodiversity has not been slowed down. If anything, it has been sped up. We are all trying to learn about the new normal during and after the pandemic. Time will tell if our online resources and virtual support from the Stanford Neurodiversity Project can translate to benefits in the educational and employment settings.
We know that adults on the spectrum with valuable skills are woefully underemployed, leaving them at financial risk. With this pandemic and jobs being furloughed and lost, are you seeing the impact in this community? And has the economic fallout stalled hiring and intern programs in companies usually proactive in hiring the neurodiverse?
Dr. Fung: Before the pandemic, it was estimated that about 80% of adults on the spectrum are unemployed or under-employed in the United States. During this pandemic and the accompanying economic downturn, many people are losing their jobs, especially those in small to medium sized businesses. People with disabilities including autism are often the first to be let go, and the last to be hired. Without performing a study to assess the effects of the pandemic on employment in the neurodiverse community, we cannot tell the magnitude of the impact. However, from a previous study completed by Kaye during the 2008 recession, job losses among workers with disabilities far exceeded those of workers without disabilities. (Ref 1)
The economic fallout has affected the entire economy. No sector is completely unaffected. Corporations with specialized employment programs (e.g., Microsoft, DXC Technology, SAP, JP Morgan Chase, and Ernst & Young) for neurodiverse individuals are no different. I have not seen growth nor shrinkage of those programs. In the Stanford Neurodiversity Summit this October, leaders of these companies together with other small to medium-sized companies will participate in panel discussions. We hope that this forum can help with igniting the interest in the Neurodiversity at Work initiatives even during the toughest time during and after the pandemic.
So many services and support agencies have been affected by COVID-19. Some shuttered temporarily, some losing financial support to continue their full slate of services. This must affect not only individuals on the spectrum, but their families as well, all of whom might rely on a network of support for their loved one?
Dr. Fung: Indeed, services and support agencies are struggling financially in this economic downturn. However, many have adapted to the “new normal”, and are offering services virtually. For example, some service agencies are able to obtain funding from Department of Rehabilitation to run virtual pre-employment training for individuals on the spectrum. Children on the spectrum are receiving behavioral therapy sessions virtually as well.
What I worry about is the security of funding sources from state government. Many states have proposed budgets cuts on many areas, including funding for disabilities. A recent report by Turk et al. at SUNY Upstate Medical University examining about 30,000 COVID-19 patients found that the case-fatality rate was 1.6% among young patients (<18 years) with intellectual and developmental disabilities (IDD), substantially higher than the rate for patients without IDD (<0.1%). (Ref 2) They also demonstrated higher case-fatality rate in adults (age between 18 and 74) with IDD (4.5%) than without IDD (2.7%). These grim statistics really called for an increase in funding to support individuals with IDD, including autism.
What are your recommendations for minimizing the impact that COVID-19 disruptions have had on the neurodiverse community? Please include any resources or links you feel would be helpful.
Dr. Fung: Like everyone, neurodiverse individuals should maintain their routines if possible and create new ones that can be sustained. They should also cultivate new interests and hobbies. They should maintain contact with their social support. Social distancing should mean physical distancing, not social isolation. For some neurodiverse individuals, they may face enough challenges that will warrant mental health support. Family members and friends should be as supportive as possible during this unprecedented time and if necessary urge neurodiverse individuals to seek mental health support. It is also important for families to avoid burnout and pay attention to their own mental health.
During the pandemic, numerous neurodiverse adults struggle to keep their jobs. In this aftermath, many neurodiverse job seekers will encounter an even worse employment market. Whether or not they get an internship or additional training, I recommend that they do whatever they can to improve their qualifications while they look for employment. There are plenty of online courses that can help them strengthen their background. This way, they will maximize their chance to find opportunities that are consistent with their strengths and interests. Neurodiverse job seekers may also want to consider getting help from specialized employment programs for neurodiverse individuals (e.g., Neurodiversity at Work Program at Stanford).
Further resources for neurodiverse adults on employment can be found in the following websites:
- U.S. Department of Labor Resources for people of the Autism Spectrum
- COVID-19 Resources by Job Accommodation Network
Resources for families with neurodiverse children and adolescents can be found in the following websites:
- American Academy of Child & Adolescent Psychiatry
- Washington Post article on individuals with autism and face masks
- Kaye, S. The impact of the 2007–09 recession on workers with disabilities. Monthly Labor Review October, 19-30 (2010).
- Turk, M. A., Landes, S. D., Formica, M. K. & Goss, K. D. Intellectual and developmental disability and COVID-19 case-fatality trends: TriNetX analysis. Disabil Health J, 100942, doi:10.1016/j.dhjo.2020.100942 (2020).