Many autistic students have learning and social difficulties that require support from educators. OAR’s ninth Life Journey Through Autism guidebook is intended to help general education teachers provide that support to students with Level 1 autism spectrum disorder (ASD), as introduced in the DSM-5 and defined as a mild form of autism that requires support.
Specifically, An Educator’s Guide to ASD (Level 1 Supports) contains information that will help teachers in the general education classroom and others to:
- Become familiar with ASD and how it affects a child
- Identify evidence-based academic and environmental strategies to promote classroom success
- Make use of behavior-based strategies, visual supports, and assistive technology
- Foster successful peer relations and social interactions
- Effectively communicate and collaborate with parents during the individual education program process
- Prepare students for transition
The guide also offers relevant information and background about ASD, including changes in diagnostic terminology and culturally accepted terms and legislative history.
Download a PDF of the Life Journey Through Autism: An Educator’s Guide to ASD (Level 1 Supports) or order a free print version on OAR’s website. For questions, comments, or bulk orders, please contact the Programs team at 571-977-5391 or [email protected] researchautism.org.
Researchers at Rutgers University recently reported that, between 2000 and 2016, autism rates among children without intellectual disabilities rose by five times— from 3.8 per 1,000 to 18.9 per 1,000 in the New York-New Jersey metropolitan area. Rates among children with intellectual disabilities more than doubled – from 2.9 per 1,000 to 7.3 per 1,000. The research team used data from four counties included in the New Jersey Autism Study.
“One of the assumptions about [autism] is that it occurs alongside intellectual disabilities. This claim was supported by older studies suggesting that up to 75% of children with autism also have intellectual disability,” said Josephine Shenouda, an adjunct professor at the Rutgers School of Public Health and lead author of the study, in an article on the Rutgers website. However, the Rutgers research team found that two in three autistic children in the Rutgers study did not have any intellectual disability. More research is needed to specify the precise causes, she said.
“Better awareness of and testing for [autism] does play a role,” said Walter Zahorodny, associate professor at the Rutgers New Jersey Medical School and senior author on the study in the Rutgers article. “But the fact that we saw a 500 percent increase in autism among kids without any intellectual disabilities – children we know are falling through the cracks – suggests that something else is also driving the surge.”
Autism rates also increased overall, tripling among children in New York and New Jersey, the NBC News article noted. This mirrors findings for the country as a whole. One in 44 children had been diagnosed with autism by age 8 in 2018, compared to 1 in 150 in 2000, as reported by the Centers for Disease Control and Prevention.
The causes for the increase are not clear. Dr. Shenouda said in an article on the NJ.com website that environmental factors may play a role. Other experts believe the rate has remained more or less stable and that identification has gotten better. Stephen M. Kanne, director of the New York-Presbyterian Center for Autism and the Developing Brain, pointed out that researchers and clinicians have a better understanding of autism and how to diagnose it. “So we’re identifying more people with the disorder appropriately, and that creates the rise in prevalence that really does account for the lion’s share of what you’re seeing.”
Wendy Fournier, president of the National Autism Association, believes it’s a combination of both, as she said in a U.S. News & World Report article. “There is greater public awareness of early signs of autism, making parents more likely to address developmental concerns with their doctors, and actual prevalence rates are continuing to rise at alarming rates year after year.”
The Roles of Socioeconomic Status and Race
Similar to previous findings linking autism prevalence to race and socioeconomic status, the Rutgers study showed that, while they have narrowed, disparities still exist. According to the study, black children without intellectual disability were 30% less likely to be diagnosed with autism compared with white children. Children in affluent areas were 80% more likely to be identified with autism without intellectual disability compared with children living in underserved areas.
Dr. Shenouda said that the study’s findings highlight a need for early screening, identification, and intervention. “Because gains in intellectual functioning are proportionate with intense intervention at younger ages,” she noted. “it’s essential that universal screening is in place, especially in underserved communities.” She estimated that only about half of children in the United States are being screened, according to the NBC News article.
Sherri Alms is the freelance editor of The OARacle, a role she took on in 2007. She has been a freelance writer and editor for more than 20 years.
Valerie Thompson, a later diagnosed autistic individual, found herself going to interviews and receiving positive feedback but not a final offer despite considerable tech industry experience. She turned to Hire Autism for help and was paired with Angela Herbert, a Hire Autism navigator.
Over several weeks, the pair met virtually to discuss Thompson’s job search, update her resume, discuss potential accommodations, and explore education and employment opportunities.
“Working with Angela helped because I was so upset about things and at a point where I just felt like the job search was a whole new world to me. She helped me get started, and it was nice to have someone that was an accountability partner I could meet with each week and give me ideas of things to try,” said Thompson.
Herbert recommended Melwood’s abilIT 14-week IT technical and professional training program. Thompson applied and was accepted to the program, thrilled to have a remote opportunity that allowed her to learn more about her career.
While participating in the abilIT program, Thompson and Herbert continued working together to finalize her materials. They also talked about potential accommodations she might need to be successful on the job and how to discuss those accommodations with employers. With these tools in place and after completing the abiliT program, Thompson confidently went into the interview process. Her efforts and the help she got from Herbert paid off when she was offered a position as a data analyst with Paramount Plus, Nickelodeon.
Reflecting on their time together, Herbert shared, “It was a wonderful experience getting to work with Valerie and seeing her further develop the necessary skills. I appreciated her willingness to collaborate and create a plan. I’m thrilled for Valerie and proud of what she has accomplished.”
“I don’t think I would have found this position if I hadn’t done this program or reached out,” said Thompson about Herbert’s assistance. “I wish more people knew about Hire Autism so they could get help no matter where they are in their career.”
Now, with a new career that motivates her daily, Thompson pays it forward and spends her free time mentoring others. “I have been in tech for many years, and I want to give back to people who are just starting their careers, sending them links and other things I have learned.”
Are you or someone you know interested in helping autistic adults look for and find jobs? Apply for our April 2023 cohort. Applications will be accepted until Friday, April 7, 2023, at 11:59 p.m. ET. If you have questions about the Navigator Program or want to learn more, contact Brittany Spence.
In November, OAR’s Board of Directors authorized funding for eight applied autism research studies in 2023. These new grants, totaling $313,712, bring OAR’s total research funding to more than $4.7 million since 2002. This article is the third of eight previews to be featured in The OARacle this year.
Between 40 and 60% of autistic children in elementary school, particularly those with average to above-average intellectual abilities, spend a significant portion of their school day in general education settings. Doing so provides significant benefits for them, including the chance to develop age-appropriate academic skills, enhanced socio-emotional functioning, and expanded opportunities to develop peer relationships.
However, inclusive educational practices alone do not necessarily lead to social inclusion of autistic students. Parents and teachers report that autistic children are more likely to be perceived negatively, isolated, and bullied compared to their neurotypical classmates. Autistic children’s peers may have a hard time understanding the social and behavioral differences that characterize autism.
For this two-year OAR-funded study, Promoting Autism Acceptance in Children with Virtual and In-person Elementary School Programs, researcher Denise Davidson, Ph.D., will address these issues through a program that uses OAR’s Kit for Kids materials. In 2020, she and her research team piloted a five-week virtual Autism Acceptance Program using the Kit for Kids materials along with videos, interactive activities, and handouts. Data analysis showed significant gains in neurotypical children’s knowledge about autism, their attitudes, and desire to interact and establish friendships. For this study, Dr. Davidson’s goals are to:
- Implement the program in additional classrooms for a more thorough assessment of its efficacy
- Compare learning in the virtual program with in-person delivery of the same program
Dr. Davidson is a child psychologist and tenured faculty member at Loyola University Chicago whose research focuses on issues that affect autistic individuals and has included numerous autistic children and adults as participants. In addition to promoting autism acceptance, her recent research includes assessing the efficacy of a socio-emotional training program for autistic children and exploring aspects of functioning impacted by autism, such as executive functioning.
The research team will recruit 3rd and 4th grade children (8 to 10 years old) from four elementary schools in Chicago and nearby suburbs for a total of eight participating classrooms. Autistic children are welcome to participate with parental consent and their assent. Middle childhood is marked by increased emphasis and importance of peer relationships, especially the development of friendships. Research has also shown that by middle childhood, children have the capacity to understand information provided about others while negative stereotypes and misconceptions toward a group can be lessened with factual information.
Four classrooms will participate in the virtual program and four will participate in person. Four classrooms will serve as wait-list controls in the first year of the study and will participate in the program in the second year.
The weekly program will take place over five weeks, with one 35-minute module presented each week on topics related to children’s understanding and acceptance of their autistic peers:
- Facts about autism
- Strengths of autism
- Accepting similarities and differences in peers with autism
- Exploring the sensory world of autism
- Encouraging friendships
Dr. Davidson and doctoral students at Loyola will facilitate the program.
Each module contains material that relates to facts about the topic and discussions about how to promote specific behavioral intentions, for example, including an autistic peer in activities. These OAR education materials will be used in the modules:
- Kit for Kids workbooks
- “What’s Up with Nick?” booklets
- The Kids with Autism Might poster
- Autism Tuned In video
Additional components will include videos, interactive activities, PowerPoint presentations, and handouts giving instructions on interacting in a positive manner with autistic peers.
Each module session will include:
- Greetings and gathering of children’s verbal assents
- Brief PowerPoint presentations introducing the module topic and recapping the material from the previous module
- Presentation of OAR’s Autism Tuned In and YouTube videos on the topic with follow-up discussions
- OAR Kit for Kids workbook pages or interactive activities/discussions that correspond to the topic
Pre-program measures will evaluate the children’s knowledge of autism and behavioral intentions toward another child. Teachers will complete a scale assessing children’s behavior toward their classmates. Those same measures will be administered again after the program and then again two weeks after program completion. In addition, assessment measures will determine what the children learned and what they thought about the materials and modules. Teachers will also assess the materials and modules.
Facilitators will complete a checklist that includes time to complete each module and its activities, children’s attendance, and a listing of problems that arose during the module. Statistical assessment will measure changes in knowledge, affect, and behavior between pretest, post-test, and maintenance.
This study seeks to address how educators can ensure that autistic children thrive in inclusive educational settings by educating non-autistic children about autism. Practical outcomes of the project will include the development of an autism acceptance handbook.
This program fits within anti-bullying, anti-stigma, and inclusion and equity curricula. Most importantly, the program is in line with OAR’s mission and has the potential to improve the lives of autistic children.
Sherri Alms is the freelance editor of The OARacle, a role she took on in 2007. She has been a freelance writer and editor for more than 20 years.
“The world needs different kinds of minds to work together.” – Temple Grandin
That’s right…I said it: Neurodiversity is a superpower. In this article, I explore the incredible strengths autistic and other neurodivergent* individuals bring to the workforce, why these strengths are important for employers, and what neurodivergent employees should look for in a potential employer.
Results from JPMorgan Chase have found that neurodivergent individuals bring incredible benefits to the workplace, and in the right environment, autistic people can be from 90 to 140% more productive than their neurotypical peers. Preliminary results from a Hewlett Packard program in Australia employing neurodivergent people found that neurodivergent employees are 30% more productive overall.
In my experience, those benefits are a result of the strengths neurodivergent people bring to their work, like high levels of creativity, innovation, focus, and loyalty. We are often tenacious about finding solutions even under tough circumstances.
Many neurodivergents do not recognize their innate talents, making it difficult for us to see what we can offer a potential employer. Some of those strengths are:
- Attention to detail
- Visual processing skills
- Ability to identify trends
- Problem solving
- Asking detailed questions
- Recalling details
- Fast processing speeds
- Special interests that may be career related
Every item on that list is much needed in today’s workplaces. If you are autistic and reading this, you can probably add even more of your own specific strengths to the list or ask friends and family what they are. For example, I am good at doing logistic tasks at work, and I love calendars and schedules.
Being neurodivergent does have its challenges, as you probably know. An estimated 30 to 40% of people who are neurodivergent are unemployed, according to The Center for Neurodiversity & Employment Innovation and 85% of autistic college graduates are unemployed, as noted in a 2019 article on the Marketwatch website. Not only that, but neurodivergent individuals often do not get promoted and face other workplace challenges. A handbook published by Universal Music UK about embracing neurodiversity noted that 40% of neurodivergent tech workers hide their status.
The Right Environment for Your Talents and Challenges
When an environment doesn’t support your learning style, communication style, or sensory needs (to name a few), you might have difficulty using your key talents to your maximum potential. To put those strengths to work, you need the right environment, one that provides supports tailored to your needs, whether that is having a helper to ask for specific accommodations or an environment that will enable you to thrive.
When neurodivergent individuals are in a workplace that doesn’t support our learning style or skill sets, we may have difficulty with:
- Being overly literal
- Reading non-verbal cues
- Sensory challenges
- Sense of overwhelm
- Social challenges
- Communication challenges
It is necessary to understand your specific weaknesses so you can address them with your employer. For example, I need a quiet environment and the ability to work on my own time.
Many neurotypical employers may not know neurodivergent or autistic adults and may have misconceptions. Being able to address those directly can help your employer help you get the right supports. It is empowering to let people know what you can do, what you need support with, and how that will enable you to do a great job.
Although your challenges may be inherent to a particular diagnosis, it does not mean that you cannot properly perform a job, but it might mean that you need workplace supports to help you perform your job well.
A workplace that actively engages, supports, and hires neurodivergent employees creates a culture where all employees feel they can be themselves. This fosters a healthier and more supportive workplace environment for all people. JPMorgan Chase, for example, has an Office of Disability and Inclusion, with an initiative called Autism at Work focused on supporting autistic people to do their jobs well and educating co-workers about what autism is and how to work with autistic colleagues. IBM and Yahoo have diversity and inclusion practices that include neurodiversity, and some smaller organizations are also beginning to follow these best practices.
Remember: when you are looking for a career, you need one that suits you and the organization in equal measure…it’s not just about if they want you, but also about if you want them.
*I use the term autistic and neurodivergent interchangeably in this article, meaning that if I use the term neurodivergent, it also applies to autism. In this article, I am including autism, ADHD, dyslexia, tic disorders, and other dysgraphic/dyscalculic/etc. differences when I use the term neurodivergent.
A self-diagnosed neurodivergent, Cynthia Coupé is a speech language pathologist and diversity, equity, and inclusion specialist committed to transforming traditional systems to better serve people with special needs. She is also mother to a neurodivergent daughter, TEDx speaker, blogger, and change agent. Her life mission is to build empathy, understanding, and appreciation between the neurodivergent and neurotypical worlds. She firmly believes this begins with curiosity and the willingness to connect through open and honest conversations. You can find and follow her at www.cynthiacoupe.com or on LinkedIn.
It is commonly known that it takes an average of 17 years before an impactful research study affecting clinical or healthcare knowledge is incorporated into practice. Why the delay? And why, in the era of social media and rapid information flow, is information misinterpreted and contorted? These questions, and others, are important for our society to consider, because how we construct knowledge and learn from one another is more than a researcher’s responsibility. It is a community responsibility.
In the autism community, a rich tapestry of knowledge comes from individual lived experiences that ultimately affect how people identify themselves, pursue goals, and experience the world. Unfortunately, like in many other communities, there has been marginalization, suppression, or exclusion of some voices in autism research, resulting in knowledge that is partially true for some but definitely not true for others. These gaps greatly impact what we think about autism and how we pursue next steps. Acknowledging the imperfect history of research broadly and within the autism community specifically is also essential for understanding why community-partnered research is important.
Through the lens of shared ownership of knowledge and the importance of rectifying historical power differentials in research, one solution is an active and intentional practice of community engagement in research. This solution does not skew towards a specific approach — e.g., community-based participatory research (CBPR) — but rather acknowledges a continuum of engagement by the autism community depending on the research question, the type of study, and the resources available.
Who is in the Autism Community?
A community is a group of people who are impacted by one another’s decisions and actions. Autistic people are most impacted by autism research and are key members of a research team. Care partners of autistic people are also impacted by autism research. Other members of the autism community include:
- Organizations that develop and deliver services and supports
- Clinicians or educators who work with autistic people
- Healthcare decision-makers
- Leaders who govern systemic policies and practices
- Public health professionals
- Payers or regulators who determine the payments of services and supports
In the historical scope of autism research, some community members have had more influence and opportunity to be included than others. This imbalance of power within decision-making related to research has negatively affected how members of the community interact and understand each other’s needs. An important part of authentic engagement requires acknowledgment of these previous exclusions and explicit actions to ensure members feel welcomed, supported, and able to contribute their perspectives.
Engaging all of these community members as co-researchers addresses gaps in knowledge through alignment of people in the community who are most directly impacted by those gaps. Including impacted members of the community as co-research partners ignites an urgency and expected impact that otherwise wouldn’t exist in academic-driven inquiry.
Key Elements for Effective Partnerships
If we can acknowledge the importance of community-engaged research, then we need to identify the elements that sustain effective partnerships. I can only write about my experiences in community-engaged research and recognize that other teams develop, learn, and grow differently. In my experience, the key elements for developing and sustaining our team of autistic and non-autistic research partners have been:
- Humility and openness to change
- Building on strengths and maximizing abilities through supportive virtual, physical, sensory, and social environments and opportunities
- Developing deep (not superficial) working relationships that acknowledge each person’s identity and life experiences
- Celebrating the success and growth of our team collectively
Fundamentally, these elements promote a stronger team and lead to trust, better awareness of where and when adjustments in process or timeline are needed, and increased participation and ownership of the research process by all members of a team. This, in turn, means that our team can have meaningful and authentic conversations that include constructive feedback and requests for changes related to the research that otherwise might not be raised.
Building a community of autistic research partners and others takes time, funding, and a genuine desire to do the research for more than the next grant or publication. Authentic autistic engagement for our team has included:
- Presuming competence and lived experience are as important as formal research training
- Asking community research partners what their goals and hopes are (personally and professionally)
- Figuring out how to ensure the collaboration is mutually beneficial by offering a variety of research roles that align with those goals
- Learning about each person’s preferred communication style and whether they have any requests for creating a successful working environment
- Being open and explicit about compensation and any university/system requirements or barriers that the research team leaders can anticipate (e.g., delays in payment due to processing time)
- Being open and explicit about needed resources and whether there is compensation for those (e.g., internet time to join video calls, need for a computer, and child care support so they have uninterrupted time to participate)
- Sharing clear and detailed information about the roles, tasks required, and timeline for completion
- Collaboratively developing group procedures and expectations about things that might not otherwise be stated (e.g., is there a preferred process for raising concerns? For making decisions? For sending an email and expecting responses?)
- Building in structures for how engagement is evaluated and process checks for whether people are truly involved or just named on paper (i.e., tokenized)
Elements of Ineffective Partnerships
I have observed situations where community participatory research is claimed but does not appear to happen. Red flags suggesting lack of engagement include:
- Ineffective communication processes that exclude people due to lack of accessibility, timeliness, or clarity
- Lack of clearly shared power in a project or involving people tokenistically rather than authentically
- Lack of compensation that is pervasive or unaddressed (rather than occasional, as might happen due to loss of funding between projects or system/processing delays)
- Lack of opportunities for feedback on the process or product, suggesting the team is not open to learning and growing
- Lack of measurable or identifiable change that occurs in the research process following community partner involvement
Oftentimes, researchers who involve community partners without planning can fall into a trap, thinking the research process will unfold as usual with the addition of occasional advisory board meetings. However, truly engaged partners provide substantial and meaningful input that requires timelines to slow down and research procedures to change. Researchers should be prepared to flex timelines, budgets, and research design elements with community involvement.
Funding Community-Involved Research
Academic researchers, community research partners, and organizations that fund and support research should be aware that systems greatly impact the success of such research. Organizations that fund research that emphasizes community involvement should anticipate and allow for:
- Timelines that are flexible and not rigid
- Adjustments to budget or travel that happen when processes or procedures necessitate support for expanded community member involvement
- Regular check-ins to support teams when challenges arise
Institutional Support for Community-Involved Research
Sometimes academic institutions create unnecessary barriers, particularly around compensation or training requirements. Greater attention to successful solutions and processes (and the publication of these engagement strategies) is needed. Further, autistic people and care partners in the community should recognize that these barriers exist and oftentimes are outside of the control of the academic research team leaders. Academic researchers who regularly do this work are often advocates within their institution, calling for changes to processes and procedures that negatively impact our community partners. However, because they often lack the direct ability to cause change, it is important to implement workarounds as needed and for all members to be flexible.
Some things that would help increase community-engaged research include:
- Accessible and clear human subjects research training that is understandable and presented in a variety of formats (e.g., universally designed learning)
- Flexible compensation opportunities from academic institutions that recognize that not all research team members have the ability to generate invoices, receive monetary payments, or have internet to support involvement
- Policies allowing for reimbursement of research-related costs for community partners (e.g., paying for a person’s internet to be able to join virtual meetings)
Additionally, organizations can be catalysts for connecting interested community members with academic researchers. Oftentimes, academic researchers wonder how to meet or find community partners who are interested, and organizations can play a role in supporting those connections, such as through hosted events or newsletters with opportunity listings.
Lastly, due to the extreme distrust, marginalization, and continued ‘othering’ in autism research, I suggest that we do a better job of listening to one another. It is unlikely that there will ever be a team that includes all perspectives or experiences, but we can respect and listen to one another. We can acknowledge who is on our team, who is not, and what other teams can do to build on that work. This is a collaborative effort to fill in the gaps in our knowledge thoughtfully and respectfully. In this way, we can take the research outside of our academic institutions and ensure that it is co-owned by people who can use it and share it for good.
Teal W. Benevides, PhD, MS, OTR/L, FAOTA, is a wife, mother, occupational therapist, and researcher. She is a tenured associate professor in the Institute of Public and Preventive Health at Augusta University. Dr. Benevides is committed to fostering access to services and supports for autistic people and others with intellectual and developmental disabilities through community-engaged approaches. She is a member of OAR’s Scientific Council and a fellow of the American Occupational Therapy Association, and serves on several additional autism, suicide prevention, and occupational therapy organizations as a board or committee member to advance scientific knowledge, translation, and promotion of community priorities.
April has been designated as a month to celebrate and campaign for autism acceptance since the 1970s. As part of OAR’s April activities, we are hosting a four-part webinar series on the themes of sexuality and relationships. Conversations about sexuality and relationships are needed just as much in the autistic community as they are in neurotypical ones. It is also important to engage, inform, and advocate for relationships and sexuality conversations that support autistic people across the spectrum.
Join us to hear experts discuss sexuality and relationships along with identity, consent, interpersonal communication, social skills, and more. The four webinars will offer expert information for self-advocates, parents, educators, and other professionals who support the community.
All of the webinars are free and include a Q&A session. Those who attend the live webinars will receive certificates of attendance. To suggest future webinar event topics or provide general feedback on OAR’s webinar program, please contact us at [email protected] researchautism.org.
Preparing for “the Talk”: Ways to get ready to talk about sexuality, relationships, and identity
April 13, 2023 at 12:00 pm, EDT
Presented by: Eileen Crehan, Ph.D.
The landscape of dating, relationships, and sexuality changes rapidly — and for those of us providing support or guidance in these areas, knowing where to begin can be daunting. Join Dr. Crehan, a licensed clinical psychologist and autism researcher, to build your comfort with discussing sexuality and relationship topics and to hear about current research. She will identify comfort zones for dating, relationships, and sexuality to promote positive, self-directed outcomes for autistic individuals. She will also use a positive framework to think about goals for attendees’ learning and share resources for additional learning. Register for this webinar here!
Dr. Eileen Crehan is a licensed clinical psychologist specializing in autism and neurodivergence in adolescence and adulthood. Her research lab at Tufts University focuses on improving access to care using methods developed in collaboration with autistic individuals. In her clinical practice, Pegasus Consulting, Dr. Crehan conducts assessments with adults and works with organizations to improve accessibility and understanding of autism across the lifespan.
Getting and Giving Consent: For People with Autism
April 20, 2023 at 1:00 pm, EDT
Presented by: Katherine McLaughlin, M.Ed., AASECT Certified Sexuality Educator
How do we know that someone wants to do something with us? How do we make sure we are clear about what we want? Whether it is being in a person’s company or being sexual with another person, it takes both people to communicate clearly and to listen to the response. In this workshop, Katherine McLaughlin will explore what consent means, how to give consent, how to get consent, and ways to manage rejection when we ask for consent. You can register for this webinar here!
Katherine McLaughlin, M.Ed., AASECT certified sexuality educator, is the founder, CEO, and lead trainer for Elevatus Training. As a national expert on sexuality and intellectual and developmental disabilities, she trains professionals and parents as well as individuals to become sexual self-advocates and peer sexuality educators. She is the author of the Sexuality Education for People with Developmental Disabilities Curriculum and developer of online courses that engage parents, professions, and self-advocates. She has spent her 25+ year career committed to elevating the status of all people, which is why the name of her growing company is Elevatus Training. Contact her at www.elevatustraining.com.
Friendship Development for Autistic Youth: Lessons from the UCLA PEERS® Clinic
April 27, 2023 at 1:00 pm, EDT
Presented by: Elizabeth Laugeson, Psy.D.
This interactive webinar will provide an engaging overview of an evidence-based intervention for neurodivergent adolescents and adults seeking to make and keep friends. The webinar leaders will highlight methods for teaching friendship skills utilized in the PEERS® intervention, including video demonstrations of targeted skills. As one of the only empirically supported and internationally recognized social skills programs for neurodivergent youth, PEERS® is currently used in over 150 countries and has been translated into over a dozen languages. Attendees will be given concrete strategies for friendship development and maintenance, along with tips for handling bullying and rejection. Register for this webinar here!
Dr. Elizabeth Laugeson is a clinical professor in the Department of Psychiatry and Biobehavioral Sciences at the UCLA Semel Institute for Neuroscience and Human Behavior and a licensed clinical psychologist. She is also the founder and director of the UCLA PEERS Clinic, the director of the UCLA Tarjan Center, and the program director for the Predoctoral Psychology Internship Program in Autism and Neurodevelopmental Disabilities at UCLA. Dr. Laugeson has trained tens of thousands of mental health professionals, educators, and families worldwide. She is dedicated to developing and testing evidence-based treatments to improve social skills across the lifespan and across the globe.
A Guide to Interpersonal Communication and Conflict for Autistic Teens and Adults
May 11, 2023 at 1:00 pm, EDT
Presented by: Courtney Lang, Ph.D., and Liana Hicks
Interpersonal communication and relationship conflicts happen to us all. In this webinar, Liana Hicks and Courtney Lang will discuss interpersonal communication and relationship conflicts and how to guide autistic teens or adults through them. The two experts will present on how to interact during and grow from arguments and misunderstandings, as well as when to escalate and when to cool off. Lastly, they will share tips, tricks, and tactics to practice navigating interpersonal interactions in everyday scenarios. You can register for this webinar here!
Liana Hicks is a student support coordinator in the Autism Initiative at Mercyhurst University (AIM) with four years of experience within the department. She has a bachelor’s degree in psychology from Gannon University and a master’s degree in special education from Mercyhurst University. She is integral in assisting with CREATE program development and increasing AIM’s external network of local and global partnerships. She has attended past vocational exposure experiences and is helping plan the upcoming spring 2023 trip to Washington, D.C.
Dr. Courtney Lang is a corporate education consultant and owner of See Bea Media. She spent nearly two decades teaching communication and research analytics at the university level. Her last position of service was as communication department chairperson at Mercyhurst University, where she worked closely with the Autism Initiative at Mercyhurst. During her time there, she taught in the CREATE program and worked closely with AIM to improve communication interactions and outcomes for autistic and neurodiverse students.
Military duty often requires service member to be away from home for extended deployments for training or combat operations. Depending on your child, the immediate impact of such absences may vary from near-calamitous to barely noticeable. Nevertheless, there are some things you can do to help mitigate the effect, including:
- Create a “countdown calendar” with your child to mark the days until you or your spouse is to be deployed. If possible, include dates on the calendar for emails, Skype, phone calls, and the eventual return. Reverse the process when a parent deploys, and create a “Homecoming Calendar” to mark the time until the deployed parent returns.
- Develop a series of short videos of the soon-to-be-deployed parent and show them to your child on a regular basis.
- Encourage siblings, extended family members, or even neighbors, to, at times, fill in for the deployed parent (e.g., during a trip to the doctor). Independent of the impact on the child with autism, the impact of deployment on the parent who remains behind is significant.
Some recommendations for how you, as the stay-at-home parent, can best deal with the challenges of deployment include:
- If you know a deployment is pending, plan ahead. Determine what additional help you are going to need and prioritize your needs. See if your child’s school has an after-school program they can attend. Recruit volunteers from your community of faith, extended family, and neighbors to help out when you most need it.
- Learn to accept the fact that despite your best efforts, there will be days that are “less than perfect.” All that can be expected of you is your best effort, and on days when that does not seem to be enough, do what you can and move on.
- Network with other parents—both inside and outside of the military. Other parents are often great sources of ideas and strategies to make each day go as smoothly as possible.
- Find time to take care of yourself. Whether it is regular exercise, reading for pleasure, meditation, carpentry, or anything you prefer, the more you can work the activity into your daily or weekly schedule, the better you will be able to deal with stressors associated with a pending or current deployment.
This post was adapted from Life Journey Through Autism: A Guide for Military Families. Click here to download or order the guide.
In November, OAR’s Board of Directors authorized funding for eight applied autism research studies in 2023. These new grants, totaling $313,712, bring OAR’s total research funding to more than $4.7 million since 2002. This article is the second of eight previews to be featured in The OARacle this year.
Unhealthy substance use, which includes alcohol, marijuana, illicit drugs, and medications used for non-medical reasons, is a public health problem. One in 10 (23 million) Americans have substance use disorder (SUD), according to the National Epidemiologic Survey on Alcohol and Related Conditions. SUDs may be just as prevalent or even more prevalent among autistic adults than non-autistic adults. Autistic people use substances to cope with co-occurring mental health conditions and perceived social difficulties.
Evidence-based SUD programming can help those who may not have a SUD but engage in unhealthy substance use as well as those who may have a substance use disorder. For autistic people, the need for substance use education is even more critical as research shows that less than half of autistic youth received school-based education about unhealthy/hazardous substance use.
Evidence-informed curricula are available to address SUD/unhealthy use in the general population. However, there are no evidence-based alcohol and drug interventions proven effective for autistic people.
For this OAR-funded, two-year study, researchers Laura Graham Holmes, Ph.D., and Emily Rothman, Sc.D., will develop and pilot-test Alcohol and Drug Choices for People on the Autism sPecTrum (ADAPT). The online ADAPT program is based on an in-person program, the Substance Use/Brain Injury (SUBI) Bridging Project, originally developed for adults with traumatic brain injury.
Dr. Holmes is a clinical psychologist and an assistant professor at City University of New York’s Hunter College. She has more than 10 years of experience studying the health and wellbeing of autistic people, particularly under-researched areas such as sexuality and substance use. Dr. Rothman is a professor of community health science at the Boston University School of Public Health and the chair of the Boston University Sargent College Department of Occupational Therapy. Her research has focused on interventions that teach healthy dating and relationship skills and substance use prevention to youth and adults, including autistic adults.
For their study, ADAPT: Development of a Substance Use Prevention Class for Autistic Adults, Drs. Rothman and Holmes will:
- Work with an autistic advisory board to finalize the ADAPT curriculum to address the unique strengths and characteristics of autistic people and rework it as an online, interactive small-group course.
- Implement ADAPT with 30 autistic adult participants to assess immediate and long-term outcomes of substance use knowledge, expectancies, and behavior. ADAPT is for autistic people who are concerned about their own alcohol or other drug use and want a healthier relationship with alcohol or other drugs. They do not need to have a diagnosed SUD.
Aim 1: Finalize ADAPT: The research team will finalize the ADAPT curriculum, including creating PowerPoint decks and activities, and adapting worksheets. As they work on the curriculum, they will convene the advisory board to obtain feedback on the content and research procedures and modify the curriculum and research project plan accordingly.
Aim 2: Pilot the curriculum: Thirty autistic adults (age 18 and over and including those who are self-diagnosed) will be recruited to participate in the study. Participants will receive gift cards worth a total of $200 for completing surveys, a self-monitoring tool, and qualitative interviews. Two autistic co-facilitators from the Asperger/Autism Network (AANE) will facilitate the online classes.
The participants will complete a pre-survey before starting the class. They will be divided into small groups of six people each. Each group will participate in ADAPT, with new groups starting every three weeks until all five groups have completed the course. The six-week course will consist of weekly 90-minute classes.
The research team will send materials prior to each week’s class so that participants can review them beforehand if desired. Participants will also take a weekly survey to indicate which home practice assignments they completed, report on how the assignments went and how the class is going, and list topics that they want to discuss in future classes. They will also complete a self-monitoring tool to assess substance use.
After all of the classes are complete, participants will participate in brief qualitative interviews.
The research team will then reconvene the autistic advisory board and ask for their feedback based on their review of the revised curriculum; a report including basic descriptive outcomes from the data, fidelity, and acceptability of the intervention; and the facilitators’ thoughts on the curriculum. Their feedback will be used for the final revision of the curriculum.
Using a variety of evaluation tools and questionnaires, the research team will compile data on:
- Past drug and alcohol use and use during class participation, and for one month after, as estimated by the participants.
- Outcomes based on participation in the class.
Data analysis will give the researchers information on:
- The implementation process and how closely it adhered to the plan.
- How participants’ knowledge changed as a result of taking the class.
- How facilitators viewed the class.
- How participants experienced and valued the class.
This study aims to support autistic adults in a new way by helping them develop healthy relationships with substance use. The goal is to offer a theoretically informed, rigorously designed, and evidence-based substance use education program specifically designed for autistic adults. In addition, the program will be available for free when the pilot test is completed, providing an effective, inexpensive, and appealing program for autistic adults.
Substance use disorder is associated with a host of related physical and mental health issues, among them heart disease, certain cancers, hypertension, and diabetes as well as depression, anxiety disorders, and suicidal ideation and behaviors. SUD is also associated with higher rates of unemployment, fewer supportive social relationships, isolation, intimate partner violence, relationship instability, and lower quality of life. Autistic people already experience some of these adverse outcomes, so addressing SUD and other factors that could exacerbate them is critical to their well-being and health.
Sherri Alms is the freelance editor of The OARacle, a role she took on in 2007. She has been a freelance writer and editor for more than 20 years.
The need for resources and support in higher education is paramount for autistic individuals who are interested in obtaining post-secondary education. Research suggests that students with disabilities, including autism, graduate with a bachelor’s degree at a rate of 38.8% compared to 60.4% of all college students (Newman et al., 2011). According to the College Autism Network (CAN), there are 104 autism-specific college support programs in the contiguous United States. While this n umber has grown over the past few years, many of the programs require disclosure of diagnosis and registration, which can be a barrier for autistic students who report fear of stigmatization. Further, CAN reported in 2022 that at least half of programs require additional fees beyond regular tuition, which can act as an additional barrier for students.
To address these challenges, Empire State University spearheaded by the Center for Autism Advocacy: Research, Education, and Supports (CAARES), is seeking to incorporate a multi-tiered system of support (MTSS) framework throughout its campus. CAARES works with the wider local community and Empire State University advisory teams, composed of community members, students, professionals, and alumni who identify as autistic or neurodivergent, as well as university employees and data analysis and behavior change professionals who identify as allistic.
The MTSS framework embeds universal supports that allow students to have access to a universal design for accessibility and learning. In other words, evidence-based supports are available to all students at any time. These include email templates, systems processing maps, task analyses, and flowcharts to clarify tasks that can be complex, such as class registration or financial aid. In addition, the institution as a whole absorbs the responsibility of inclusivity, rather than relying on the students to self-advocate for their needs. [Note: Dr. Syed received a 2021 OAR grant for her research project that implemented a multi-tiered system of support (MTSS) framework on the Empire State campus.]
Empire State University is now requiring all employees to participate in annual asynchronous training on supporting autistic and neurodivergent students. In addition, synchronous training is conducted for all faculty and support staff during required meetings. Intensive resources are also being developed and offered for students who need more support than is offered universally. These include a Peer2Peer Social Connection Program, one-on-one consultation for employees and students, and training focused on areas such as making social connections and workforce preparation. All resources created to date are free and accessible for the Empire State University community.
Creating an inclusive higher education system that embeds universal support will allow all students to benefit, including autistic and neurodivergent students, without singling out or forcing disclosure. Further, universal support can be a lower response effort and cost, such as embedding strength-based choices for assignments in curricula and having email templates students can use to communicate more easily. A huge benefit of universal support is the cultural shift towards considering disability as diversity, particularly as individuals with disabilities have been historically underrepresented in the higher education population. Access to advanced learning becomes a right to be enjoyed by all individuals, regardless of neurotype.
When first implementing this systemic change within Empire State University, CAARES realized the utmost importance of advocacy and allyship or “doing with, not for.” Therefore, ongoing collaboration and communication with autistic and neurodivergent communities, particularly students, is critical in building an autistic-supportive college.
Buy-in with the university community was also an initial challenge. Although many were supportive in theory, some expressed concern about perceived additional effort in supporting autistic and neurodivergent students. As a result of numerous formal trainings and informal discussions that provided background on disability as diversity and offered universal resources and design for learning, we have observed a shift in awareness, acceptance, and ultimately, inclusivity.
Meaningful and Improved Collaborations
It is important to note there is a difference between meaningful collaborations with other experienced neurodivergent professionals versus tokenizing an individual for the sake of saying that a member of this population sees one side or another. For example, effective collaboration comes from articles such as this one, written by an individual with autism who is asked to support an opinion and support findings with data. This mode of representation is different from providing a single experience and stating this as the overall opinion of all individuals with autism or that it represents the field of applied behavior analysis as a whole.
The challenge then comes from ensuring that the individual with autism’s voice is heard and respected much like any other professional’s would be. It is important for organizations to uplift and value the expertise of an individual with autism rather than only using them to promote their own beliefs. Consider where an organization stands and if their viewpoints match the actions they perform after the fact. Appropriate collaborations come in many forms, but it is important to remember that the best way to determine the difference between ensuring autistic voices are being provided appropriately is by determining if the collaboration had positive results for the autistic and neurodivergent population.
Welcoming diverse voices and identities to contribute to the planning, implementation, and continued oversight of the autistic supportive college initiative will, we believe, create a sustainable cultural shift in how we support autistic and neurodivergent students in higher education. Rather than putting the burden on students to change, the responsibility to build an inclusive environment should be on the higher education institution as a whole. Colleges, universities, and post-secondary environments can adopt low response-effort universal supports that are ultimately affordable and lead to increased inclusivity and cultural understanding of disability as a diversity issue. Autistic and neurodivergent Empire State University students have shared that they now feel a sense of belonging within the institution and are excited to build an increasingly accepting environment for themselves and future students.
Dr. Noor Syed (she/her) is an assistant professor of applied behavior analysis (ABA), clinical coordinator, and founding director of the Center for Autism Advocacy: Research, Education, and Supports (CAARES) with SUNY Empire State College. She has also been named the Turben director of autism advocacy with CAARES. In addition, Dr. Syed coordinates a Master of Science program in ABA through SUNY Empire. She is the director of Anderson Center International, an adjunct doctoral advisor in ABA with Endicott College, and a certified general and special education teacher. Dr. Syed also serves on the ABA Ethics Hotline and President-Elect of the New York State Association for Behavior Analysis.
Armando Bernal is a neurodivergent board-certified behavior analyst (BCBA) who supports children between the ages of 2 and 18. In addition, he provides autistic consultation, parent and therapist consultation, supervision and mentorship to other BCBAs and therapists. He also speaks on related topics for organizations around the country. He is also the founder of Autism International, an in-home ABA provider, and the distributor of the podcast, “A Different Path.” He hopes to spread awareness and acceptance of autism by supporting children in need and sharing the stories of other individuals with autism.