VOLUME 02
ISSUE 03
Navigating the
New Normal
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ON THE SPECTRUM IN
ADULTHOOD
October 8, 2021
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A NEWSLETTER PROVIDING RESOURCES FOR THE
ADULT AUTISM COMMUNITY
Brought to you by the
Rutgers Center for Adult
Autism Services (RCAAS)
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A MESSAGE FROM
THE SCALE DIRECTOR
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It's hard to believe that we have been living through the COVID-19 pandemic for 18+ months. The world as we knew it, has changed in ways that many thought they would never see in their lifetime. This journey has been anything but easy, and has in many cases caused irreparable damage to individuals, families, communities, and businesses. Many of us continue to experience hardships related to being disconnected from others and accessing our familiar communities. Others have experienced contracting COVID-19 and managing ongoing symptoms, or worse yet losing someone we know and/or care about.
For many adults on the autism spectrum, state-mandated closures of support programs (e.g., day, employment supports) have had detrimental effects on the individuals and their families. In some cases, many of the skill acquisition and behavioral programming designed to improve quality of life outcomes were discontinued, and skill/behavioral regressions occurred.
The increase in rates of vaccinations and safety measures related to social distancing, mask wearing, and general hygienic practices are pushing us towards a sense of "normalcy." This is indicated by decreasing diagnoses and hospitalizations following the Delta variant surge; however, it is clear that we still need to remain vigilant to drive this virus into the ground.
Presently, we are seeing the world return in a number of ways. Concerts, sporting events, places of business, and schools are returning to a "new normal" in regards to capacity, hours of operation, and physical distancing. As a result, many of us are able to return to the activities we enjoyed prior to all the shut downs enacted in 2020. Additionally, many employment and day programs for some adults on the autism spectrum and other disabilities have begun to reopen and/or expand the frequency and intensity of the supports. This has increased opportunities for program participants to access and navigate their communities and build skills to promote independence.
Experiencing this return to regularly seeing and interacting with people in-person, as opposed to from behind a computer monitor, for many, is exciting and joyful. It signifies a place when we, as a society, were not held in check by an invisible foe, which threatened our ability to remain healthy. As we emerge from this long "winter," we bring with us the hope for a better tomorrow, where we can prioritize our families and relationships while respecting the science that has given us the tools to do so in a safe and healthy way.
For this issue of our e-newsletter, we are thrilled to present content geared towards considerations, recommendations, and resources for re-entry into our "new normal." Specifically, information and resources geared towards how individuals on the autism spectrum, their families, support service providers, and the general community, can remain steadfast to safe practices to emerge on the other side. It may also be helpful to reflect back to our premiere issue of On the Spectrum in Adulthood, where we first examined Rethinking the Routine, when the pandemic initially hit.
Be well,
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James Maraventano, EdD, BCBA-D
Director, RCAAS-SCALE Program
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FALLING INTO A NEW ROUTINE
Jenna Budge, LSW, BCBA
Behavior Analyst, Douglass Developmental Disabilities Center
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As the temperature cools, autumn-lovers rejoice for hoodies, football, and pumpkin spice everything. The fall season in New Jersey often means swapping your summer attire with multiple layers as the morning chill is abruptly replaced by the glaring mid-day sun. This year, a mask is included in our layers, as well as a cautious re-entry to school, work, and social events.
While the COVID-19 pandemic was a shared experience, the impacts and responses vastly differ across individuals. Accessibility, home environment, relationships, and mental health shaped our experiences. The one unifying factor is that we were expected to adapt to the ever-changing world around us as quickly as the virus driving the change.
Autistic adults reported varying experiences. Commonalities inherent to autism, such as valuing predictability, made the daily uncertainty of the pandemic especially challenging. In a study conducted at two time points, Bal et al. (2021) found that moderate to severe levels of psychological distress were reported by autistic adults. Watch RCAAS' Dr. Vanessa Bal share the published findings here.
This raises the question of how we – as practitioners, teachers, friends, or family – can support adults on the spectrum?
Disrupted therapeutic or medical services
For those able to access services in the past year, telehealth promptly replaced in-person services. For some, this may have introduced a preferred method of treatment. Yet, video or phone calls have been cited as a source of anxiety for autistic adults (Oomen et al., 2021). Some individuals found messaging to be the most viable option, alleviating some of the stress surrounding reading social cues.
Depending on the level of need, you could assist in accessing diverse health and treatment options or finding a practitioner who provides flexible service provision. Identify skills needed to participate in these forms of treatment (e.g., using a computer, typing, etc.) and how to contrive a teaching setting in order for an individual to access treatment independently and confidentially. Tips for finding telehealth services include contacting a health center. RWJBarnabas Health offers such services.
Shopping
Grocery shopping was reported as one of the primary anxiety-producing responsibilities for autistic adults due to a disruption in routines and shopping-relate stress (Oomen et al., 2021). Adhering to social distancing and navigating situations where others do not comply with rules are cited as top concerns. Skills to cope with external noise are useful for in-person shopping. Another option is learning how to shop online and use contactless delivery. Check out some of the best sites for online shopping and ideas on creating a Task Analysis for completing an online order.
Socialization
Adults diagnosed with autism report socialization as a greatly impacted area (Bal et al., 2021). The loss of social skills during a time of less contact (Oomen et al., 2021) presents a need for rebuilding those abilities in order to decrease the pressure of increased mingling opportunities. Maintaining or creating a social network should be a primary focus for those providing support or services to adults on the spectrum. Facebook is a great way to find both in-person and online events with suggestions tailored to your particular location and interests.
Returning to routines
For many, time spent in quarantine decreased the sensory overload experienced on a daily basis. Those who value structure are once again called upon to adapt to a new routine. We can provide support in how to structure the day. Rules change frequently at school and work, now more than ever. Providing a safe space where questions can be freely asked is essential. Be sure to ask what is needed or help someone effectively communicate what they need.
Have conversations about our new routines that allow a birds-eye view of what may be missing. As we enter the colder months, how can we incorporate exercise? With flu season upon us, what small steps can we take throughout our day to mitigate the spread of germs? Provide encouragement in adjusting to new routines. The pandemic has taught us that what might feel strange at first could become the all too-often referenced “new normal.”
Above all – ask! Do not make assumptions or provide blanket supports regarding the needs of your client, student, family member, or friend on the spectrum. For autistic adults with limited verbal repertoires, ensure you are frequently presenting choice and measuring assent. For more information about assent, check the article titled ABA for Consent and Self-Advocacy Skills from a previous issue of On the Spectrum in Adulthood.
Support is not always teaching or accessing services. It may be a simple reminder of an individual’s strength and abilities. The past year+ showed us a time where people allowed room for mistakes, laughed at mishaps during Zoom calls, and showed an understanding for declined invitations. Let this be a time where we are gentler to others and ourselves as we learn to build a more inclusive and neurodiverse community.
For more information on the above, please refer to the following references:
Bal, V. H., Wilkinson, E., White, L. C., Law, J. K., SPARK Consortium, Feliciano, P., & Chung, W. K. (2021). Early pandemic experiences of autistic adults: Predictors of psychological distress. Autism Research.
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RETURNING TO CAMPUS IN A SEMIPOST-COVID WORLD
Courtney Butler, MS, BCBA
Program Coordinator, RCAAS-College Support Program (CSP)
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As the campus begins to fill with students, professors, and those passing through, we see life back at our University, something we have yearned for this past year and a half. The students begin to file back to campus, filling the dorm rooms, safely, but excitedly. Rutgers University was one of the first to require the COVID-19 vaccine for students to return to campus. With that, the students submitted documentation and flooded the residence halls jumping at the chance to return to campus with the expectation of a true college experience.
For many, this was an exciting time; the return to campus, or the first time on a college campus, independent of supervision. For many students, college meant long Zoom meetings in lectures, professor meetings over Zoom, and connecting with supports, again, over Zoom. The reality of college life was hidden behind a screen, but that did not stop many students from making strong connections with fellow classmates, peers in online chat forums, and through University-based virtual social events. With the chance to get back on campus, many students were excited to meet those connections they have made virtually the past year, in-person, and on campus.
For others, being on campus and thinking about attending a large public university, after a global pandemic, was something that brought on moments of stress. Many asked, “We are so overwhelmed with going back to school, what can we do to prepare our family and our loved ones?” The world responded with resources and supports for our students. For students, universities around the world reacted with supports unseen before. Disability services transitioned accommodations to support remote learning, health centers remained open to support students still on campus, counseling and mental health resources provided comprehensive supports tailored to a mental health crisis we have never seen before, and professors, deans, advisors, and academic supports worked overtime to support the students through a year of learning we never expected. As we return to campus, all supports continue at the same incredible rate as before, except now, they are provided in-person. For students with ASD, these supports can make a difference in a year of academic success, social engagement, and mental resolve. When returning to campus, we suggest that students use resources available on campus and ask for help, when needed.
For students who are willing and able to get supports:
- Check if your university has an autism support program
- Reach out to disability services to discuss accommodations, if needed
- Attend office hours
- Ask professors & teaching assistants for additional support, as needed
- Think about a reduced course load while adjusting to being on campus
- Check if your university has a mentor program within your school/major
- Register with the counseling center for any mental health needs
- Get involved in campus activities (if you don’t feel comfortable, ask a friend to join for that first meeting)
- Try chatting with a classmate
- Call home and keep your parents in the know
- Ask for help when you need it
For more information on the above, please refer to the following references:
Lederer, A. M., Hoban, M. T., Lipson, S. K., Zhou, S., & Eisenberg, D. (2021). More Than Inconvenienced: The Unique Needs of U.S. College Students During the COVID-19 Pandemic. Health Education & Behavior, 48(1), 14–19.
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COMMUNITY SAFETY REMINDERS AND STRATEGIES FOR INDIVIDUALS ON THE AUTISM SPECTRUM
Yu Yan, Doctoral Candidate, School of Psychology
Graduate Student Coordinator, RCAAS-CSP
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Safety skills have been considered a major concern for parents and professionals working with individuals on the autism spectrum. In many cases, characteristics of ASD may contribute to the increased risk of unintentional harm and injury for this population. To facilitate more independence in the community, it is crucial to raise awareness surrounding ASD and safety, as well as to expand their skill sets to be cognizant of their surroundings and stay out of harm’s way. Here are some safety reminders and strategies for different environments.
Supermarkets:
- Never share personal bank information with strangers
- Understand how to locate/approach the security/information desk
- Ask store employees for help when looking for specific goods
- Be mindful and respectful when speaking with store employees even if things don't go as planned (e.g., an item is out of stock, your coupon is expired, etc.).
Restaurants:
- Check the hours of operation
- When possible, make a reservation ahead of time to reduce wait times, or to secure desired seating location (e.g., outdoors)
- Recognize personal space and boundaries
- Don't leave your belongings unattended (e.g., while in the bathroom)
- Be conscious of your voice and general noise level
Stores:
- Be aware of policies (e.g., some stores do not allow customers go in with backpacks/food/drinks; wait in line to check out)
- Understand acceptable payment methods
- Be aware of visual and verbal prompts, such as "Mask Required," "Stand Here," "Line Starts Here," "Exit," "Restroom," etc.
Others:
- Follow requirements for face mask wearing and social distancing in public areas
- Consider having some form of identification on-hand that indicates exceptional medical needs, if applicable
- Teach young adults with autism to interact safely with police
For more information on the above, please refer to the following reference:
Wiseman, K. V., McArdell, L. E., Bottini, S. B., & Gillis, J. M. (2017). A meta-analysis of safety skill interventions for children, adolescents, and young adults with autism spectrum disorder. Review Journal of Autism and Developmental Disorders, 4(1), 39-49.
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Ribbon Cutting Ceremony for RCAAS Community Center marks official grand opening
On September 22, state and university officials and honored guests gathered for a milestone event - a formal ribbon cutting ceremony at the new RCAAS Community Center! Guests were invited to tour the facility and learn about how the Center offers opportunities to elevate the RCAAS' programs and its three-pronged mission of service, training, and research.
In celebration of the milestone event, Rutgers Today published the article, "At Dedication, a Reflection on How the Rutgers Center for Adult Autism Services Changes Lives," detailing the ceremony and more.
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RCAAS launches brand new website
The one-stop-shop for everything RCAAS is now available at the click of a button!
We invite you to take a self-guided tour through the website and explore all of the new information now conveniently available at your fingertips for viewing, any time, any place.
Visit our new website here.
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Recently, Amy Gravino, MA, RCAAS Relationship Coach, was featured on several podcasts as an advocate and adult on the autism spectrum. Amy candidly shared her expertise on topics such as sexuality exploration on the spectrum and better serving and recognizing girls and women w/ASD. In case you missed them, check out Amy’s insightful podcasts listed below!
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Research Participation Opportunity
The LifeSPAN ASD Research Lab – led by RCAAS-PSC Director and Co-Director of Research, Dr. Vanessa H. Bal – is currently recruiting autistic adults for a research study to evaluate the efficacy of a 12-week mental health treatment targeting symptoms of depression. Eligible participants will be asked to complete 12 therapy sessions (online or in-person), questionnaires, and four assessment visits.
Click here to view the flyer for more details and access the registration link.
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"It's back to normal, but it's a different normal. It's not the same as it was before, but...life goes on."
- Eric Yong, Science Journalist
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NEWSLETTER TEAM
Dr. James Maraventano,
Editor-in-Chief
Kim Spinelli,
Senior Copy Editor
Circulation Manager
Anna Schnetzer/Brielle Iannaco
Layout & Design
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