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The holiday season can be a fun, but sometimes stressful, time for autistic people. On one hand, the season may include quality time spent with family and friends. However, it can also be a deviation from
one’s routine which may include heightened sensory sensitivities and stimuli that can make the experience uncomfortable.

In this interview, Anna Robinson, a 2022 Synchrony scholar, shares some of her favorite holiday traditions and memories as well as how she navigates stress during the season.

How will you be celebrating the holidays this year?

I’ll be at home in Charlotte, North Carolina with my immediate family, our two dogs, and my grandmother. We’ll be celebrating Christmas with our usual combination of homemade food, traditional holiday movies, and presents.

What are some of your favorite holiday traditions?

The holidays can be stressful for me, but there are a lot of traditions that I love around this time of year too. My favorite has to be my family’s annual re-watch of the Lord of the Rings trilogy. We cuddle up, pop popcorn, and savor the movies (extended edition, of course) over a couple of days. Even though we’ve all seen these movies countless times, they somehow never get old. Another favorite tradition is how every year on Christmas eve, the fire department in my area has someone dress up as Santa and drive throughout the surrounding neighborhoods on a fire truck throwing candy. My family and our neighbors have a lot of fun gathering and chatting as we wait for the fire truck to come around.

Do you ever feel overwhelmed or overstimulated during the festive season?

I’m overwhelmed by the holidays every year. As a child, I used to dream of growing up and not celebrating Christmas. The morning of Christmas, in particular, can be a lot. I love being with my family, but receiving a bunch of gifts at once was always overwhelming. Though I genuinely
appreciate the things my family and friends get for me, I always felt this pressure to act radiantly enthusiastic in order to seem grateful enough. The ear-to-ear smiles, spontaneous hugs, and gushing thanks that usually go with gift-giving doesn’t come naturally to me, and it all felt false
and exhausting. When I was younger, my mother talked to me about this. She proposed that instead of opening presents all on Christmas day, I could open presents gradually throughout the month of December, and just open one thing on Christmas day. That’s what we do now, and it’s helped a lot!

 

What tips could you provide others for navigating stress during the holidays?

Firstly, I would encourage you to be very kind and very honest with yourself about how you feel about the holidays. I used to feel like I was a bad family member because I didn’t love the holidays the way others did, but that framing didn’t actually help. It didn’t encourage me to find strategies for actually navigating the holidays, and it made it harder to relate generously to others when I was just focused on my perceived shortcomings. I’d also encourage everyone to think very specifically about what elements or rituals around the holidays are stressful to you, then focus on strategies for making those moments more bearable. Don’t be afraid to re-imagine beloved traditions or to excuse yourself from things that others enjoy but you don’t.

Many schools have a holiday break from mid-December to January. How do you maintain a routine throughout this time?

This one is hard! Honestly, what I’ve found most helpful is working during school breaks. Work gives me a steady routine that I have to stick to. Scheduling events with friends and family, or having a personal goal, like finishing an interesting book, can also help.

What are you looking forward to in 2024? How do you set yourself up for success for the new year?

I’m looking forward to graduating in 2024. I’m not sure what comes next, but I’m excited to discover where life goes! Right now, setting myself up for success in the new year has mostly meant doing the work for my classes and beginning to dream and plan what to do after graduation.

 

Anna Robinson received the Synchrony Scholarship for Autistic Students of Color in 2022, and it made a huge difference in her ability to afford her education. Now, she is a senior at Warren Wilson College in North Carolina, majoring in English. At Warren Wilson, she also works in the career services office. In her free time, she enjoys reading, baking, and board games.

In 2001 my brother was participating in intensive early intervention. He was two, and I was 12. The therapy room in our basement was largely off limits for me; I would come home from school and our mom would come upstairs to greet me, unless he was having a meltdown, then she wasn’t permitted to leave the room.

In some ways autism care has shifted. In others, it hasn’t shifted enough. In 2023, we still focus very little on the family members of autistic children. When I entered clinical practice as a child psychologist, I felt passionate about changing the narrative of autism care by supporting the whole family. So much so, I created a methodology called The Whole Family Approachᵀᴹ, which integrates evidence-informed principles while ensuring we are looking at how the entire family unit functions. Historically, autism services focused on autistic children and supporting their needs, but we know from well-documented research outside of the autism field that what impacts one member of the family impacts all members of the family. Many parents of autistic children are told their child must participate in a plethora of therapy from ABA, to speech, to occupational therapy and more. Recommended by medical professionals, parents often fear that if they don’t do everything, they’re doing a disservice to their autistic child.

But what happens if the only slot for feeding therapy is at the time your non-autistic child has soccer? You’re stuck between a rock and a hard place. Traditional models tell you therapy is a sacrifice made for long-term gains, but that doesn’t mean they should be the only priority for your family.

My First Tip: Progress Can Happen Beyond Therapy

Give yourself permission to make the best decision for your family. Your intuition as a parent is powerful. Progress doesn’t just happen in therapy rooms. Maybe your autistic child will meet a peer that invites them to play on the sidelines at the soccer game. While the opportunity for social interaction isn’t classic therapy, it has its own equally important benefits. The real-world application is why therapy is praised in the first place!

One of the greatest shifts I have observed in the autism field is towards neurodivergent-affirming approaches. There is more emphasis on the need to build an autistic child’s world around them instead of trying to change them to fit into a world that doesn’t adequately fit their needs. Change only happens if knowledge of neurodiversity extends beyond the therapeutic setting.

My Next Tip: The Whole Family Matters

Educate your entire family about neurodiversity. Not only will this help your non-autistic children to build empathy and acceptance, but it will also encourage them to understand how their sibling’s brain works. Helping family members understand autism and neurodiversity can help them be more accepting of behaviors or habits that are not neurotypical. Proactive education for the whole family allows for compassion.

I don’t want to undermine the fact that there are challenging aspects that come with an autism diagnosis. As a parent, it is natural to have many feelings about the diagnosis: sadness, grief, anger, or confusion. Traditional models tell parents to bottle up feelings and focus on therapy for the child. The Whole Family Approachᵀᴹ creates space for those feelings and teaches parents how to effectively process them.

My Final Tip: As A Parent, Your Emotions Matter Too

Your child needs your full self, not a bottled-up, bursting-at-the-seams version of you. Try sitting in silence daily and acknowledge your emotions when they arise. When you experience emotions, say “I see you” in response to that emotion. At first it will feel silly, but that simple acknowledgement is such a powerful way to validate your emotions. If you want additional support, or are finding these tips aren’t enough, seek out a therapist; either your child’s provider if they employ a family approach like I do, or one you can hire separately to help you navigate the support that you need.

The message is simple: put family at the center of your decisions rather than autism care. It might sound shocking coming from a psychologist whose profession is rooted in autism care, but I promise this approach will make a difference for your autistic child and your family. I understand all the messages that are telling you that you are missing critical moments for care, but we now know that is not true. Take the pressure off yourself to do everything, and instead, do the things that leave the most impact.

Dr. Taylor Day is a licensed psychologist with expertise in the early diagnosis and intervention of autism. She has a PhD in clinical psychology and her own private practice is centered on The Whole Family Approach, a process Dr. Tay has founded and perfected over the years. Dr. Tay specializes in working with autistic children and their families and uses a combination of evidence-informed principles, along with her personal expertise with an autistic brother, to provide neurodivergent affirming care.

You can check out her website and podcast and follow her on Instagram and TikTok. 

Tory Ridgeway wanted to be an aerospace engineer in the U.S. Navy, but the Navy didn’t seem to want him. Tory is my son, who also happens to have an autism diagnosis. My hope is that our family’s experience with exclusionary military recruitment policies can be used to open doors for others with exceptional needs. This is Tory’s story, but tomorrow it could be your child’s.

If I had to describe Tory in one word, I would choose resilient. He is an honors student, eight-time Carson Scholar, Eagle Scout and a public speaker. He enjoys sketching and is a gamer. Tory was also diagnosed with autism at the age of four.

Tory’s Passion for Service

Tory’s journey has been long and arduous. Because of his disability, Tory has endured teasing, bullying, isolation and was even assaulted on a school bus. Through it all, Tory managed to excel and not allow those experiences to harden him.

Tory’s love for aviation was born out of shadowing his dad, an aviation structural mechanic and quality assurance senior chief. His dad picked him up from daycare every day and introduced Tory to an array of aircraft. Their bond built the foundation of Tory’s love for aviation and established his dream to want to follow in his father’s footsteps, serving his country in the United States Navy.

For autistic children, who often crave routine and “sameness,” the frequent moves that characterize the lives of most military families can pose particular challenges. This resistance to change often leads to anxiety and disruptive behaviors. But if given ample time to anticipate, understand, and practice dealing with anticipated changes, most children can learn to successfully cope with these transitions.

Here are some autism-specific strategies you can use to help your child anticipate and prepare for moving day.

Use Social Stories™ to Prepare for Moving Logistics

As soon as you get your orders for a new duty station, begin a Social Story with your child. A Social Story is built around an event, places your child as the main character, and uses pictures and words that your child can understand. You can use your child’s name or simply use “I,” as if the child is reading the story in the first person. If possible, work together with your child to create a storybook, complete with lots of pictures and maps, that can be read frequently prior to your move. This will ease some of the anxiety tied to moving: flying in an airplane, having the movers box up your child’s belongings, moving into a new house, and having a new room. Be sure to discuss and have pictures of the new sights, sounds, people, and smells that will be associated with your move.

Use Visual Schedules to Help Anticipate the Event

If your child thrives on a daily routine, it may help to have a picture schedule and calendar in place. At the same time each evening, have your child cross off another day on the calendar with a big “X.” This will help them understand the concept of days and “see” the moving day getting closer. Use the picture schedule to depict upcoming moving events: the day the movers will come, when you will move into temporary lodging, when you will get on an airplane or go on a long car ride, etc.

Share Information Cards with People who are Unfamiliar with Autism

Amid all the stress of traveling during a PCS, you may encounter strangers who do not know what autism is. Have a few information cards on hand that explain autism, just in case you find yourself in the middle of a sensory-based meltdown in front of unsuspecting, and possibly judgmental, onlookers.

Carry Proof of Your Child’s Disability

At least three months prior to your PCS, get a letter from your child’s physician verifying and specifying your child’s disability. You may need this for an airline, hotel, or other event that occurs during your move.

Use Your Child’s Preferences to Your Advantage

If your child has a preference for a certain color of cup, type of plate or eating utensil, don’t forget to pack these items. Several weeks prior to your trip, make a list of items your child cannot be without on a daily basis. You will thank yourself later!

Practice, Practice, Practice!

If your PCS involves staying in a hotel or temporary lodging facility, you may want to prepare by staying one night in a nearby hotel for practice. If your child is a picky eater or if the thought of eating out in a restaurant every day is daunting, you may want to request a room with a kitchenette so you can make your own meals.

Following these tips will help your child transition during PCS. For more tips on moving or adjusting your child to a new environment, check out OAR’s Guide for Military Families.

This post was adapted from Life Journey Through Autism: A Guide for Military Families. Click here to order or download the guide.

In late September, the Department of Health and Human Services (HHS) announced that nearly 500,000 people, mostly children, who had lost Medicaid and Children’s Health Insurance Program (CHIP) coverage due to procedural errors would be reinstated, according to The New York Times.

On September 29, HHS released a letter sent to state health officials emphasizing that states must provide 12 months of continuous coverage for children under the age of 19 on Medicaid and CHIP beginning January 1, 2024. In that same letter, officials also explained that states can request authority to extend the continuous coverage period for children beyond 12 months and adopt continuous coverage for adults eligible for Medicaid. As Chiquita Brooks-LaSure, administrator for The Centers for Medicare and Medicaid Services (CMS), noted in the HHS press release, continuous coverage provides peace of mind to families with the assurance that “their children will have uninterrupted access to health care coverage for a year, regardless of any changes in their family’s financial circumstances.”

According to the HHS press release, continuous coverage for children has been shown to reduce financial barriers to care for low-income families and promote health equity. Stable coverage also enables health care professionals to develop relationships with children and their parents, track children’s health and development, and help families avoid expensive emergency room visits.

People lost their coverage this past summer when states began disenrolling people after the Consolidated Appropriations Act, 2023 was signed into law in December 2022. That Act ended continuous enrollment effective March 31, 2023. The continuous enrollment provision was a part of the Families First Coronavirus Response Act mandating Medicaid coverage through the end of the COVID-19 public health emergency. In an article on its website, KFF, a health policy research organization, pointed out that Medicaid enrollment has grown substantially compared to before the pandemic, and the uninsured rate has dropped.

According to KFF’s Medicaid Enrollment and Unwinding Tracker, 73% of all people disenrolled had their coverage terminated for procedural reasons, such as not completing paperwork by the deadline. In many cases, programming errors caused automatic renewals to occur at the family rather than individual level. Because of those errors, the individuals who qualified for automatic renewal had their coverage terminated if other members of their family did not respond as needed. In the CMS letter, states were directed to retroactively restore Medicaid coverage to children and others who had lost coverage and to halt terminations until their systems were fixed.

The computer issues affected people in 29 states and the District of Columbia. Medicaid officials estimated that in many of the states, fewer than 10,000 people were affected by the errors. In Pennsylvania and Nevada, however, more than 100,000 people in each state were affected.

Kate McEvoy, executive director of the National Association of Medicaid Directors, said in a PBS NewsHour article that automated eligibility systems vary by state and can be technically challenging and costly to change. In that same article, Daniel Tsai, director of the CMS Center for Medicaid and Children’s Health Insurance Program Services, said that some states expect to complete system improvements before the end of September while others expect it to take several months.

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.

Now is a great time to make your 2024 fitness goals and join the RUN FOR AUTISM team at these fun events in early 2024. 

The Chevron Houston Marathon and the Aramco Houston Half Marathon take place on January 14 and offer a scenic running experience in America’s fourth-largest city. The fast, flat, single-loop course has been ranked as the “fastest winter marathon” and “second fastest marathon overall” by Ultimate Guide to Marathons. Additionally, with more than 200,000 spectators, the Chevron Houston Marathon is ranked as the fourth most crowd-supported marathon by the Ultimate Guide to Marathons. Register today to join the RUN FOR AUTISM team for a free race entry and dedicate your Houston miles to autism research.

Run through Times Square in New York City with the RUN FOR AUTISM team at the United Airlines NYC Half on March 17. What’s better than a run on St. Patrick’s Day in New York City? This half marathon is one of two times in the whole year that Times Square is closed off for an event. The 13.1-mile journey begins in Brooklyn, goes over the Manhattan Bridge, heads north on FDR Drive, zips through Time Square and finishes in Central Park. Join our team today to run the 2024 United Airlines NYC Half through the Big Apple. 

If what you want is a challenge with scenery, the RUN FOR AUTISM team has your event: the Big Sur International Marathon on April 28. This bucket-list race is a point-to-point course run on scenic Highway 1 from Big Sur to Carmel. You’ll see towering redwoods, crashing waves, coastal mountains, and verdant pastures as you run this course. The centerpiece is the iconic Bixby Bridge, located at the halfway point, where a tuxedoed musician playing a Yamaha Baby Grand Piano will serenade you.  OAR has limited entries into the 2024 Big Sur International Marathon so sign up today to secure your entry. 

Check out our full race calendar here and RUN FOR AUTISM in 2024. 

The new Hire Autism navigators and ambassadors will join their fellow volunteers to help Hire Autism improve employment opportunities for autistic individuals and assist businesses to create more inclusive workplaces.  

Navigators work one-on-one with Hire Autism job seekers, mentoring and equipping them with the tools necessary to prepare for the job search and meet their employment goals. Ambassadors use their personal and professional networks to increase awareness of Hire Autism in the community and across the United States so that autistic people looking for jobs can use Hire Autism services and resources.

Ruth Duffy, a navigator since January 2022, shared this recent review on the GreatNonprofits website, “I’ve been volunteering as a navigator for almost two years. I’ve had the opportunity to mentor a number of people at different stages of their job search, and feel I’ve been able to help each in some way. It has been very rewarding. The Hire Autism staff is caring and engaged and are building a great program.”

Congratulations to our newest navigators and ambassadors!  

Navigators
  • Harrison Lane
  • Justin Matthews
  • Chase Padgett
  • Julie Reed
  • Zachary Smith
Ambassadors
  • Charles Martin  
  • VS Narayan  
  • Britt Peacock  
  • Steven Searcy  
  • Leon Van Gelder  
Navigators and Ambassadors
  • Maddy Forrer
  • Eric Steward  

Are you or someone you know interested in volunteering virtually with the Hire Autism program? Apply today! If you would like to learn more, please email mail@hireautism.org.  

Hillsborough Township became the first school district in New Jersey to roll out OAR’s Kit for Kids program in elementary school classrooms. The Kit for Kids is OAR’s peer education initiative for teaching elementary and middle school students about their autistic peers and promoting acceptance of autistic students in the classroom.

The Hillsborough Township Board of Education approved the Kit for Kids’ “What’s Up with Nick?” story as supplemental material for its school counseling program. The story is narrated by a classmate of Nick, who is autistic. It teaches students in grades K-8 that autistic individuals may think differently or need some accommodations, but all students are of equal worth and should be treated as such.

“When Anthony Ferrera brought this to me as a possibility, I was elated,” said Mike Volpe, Hillsborough superintendent of schools. “This program is a great example of social and emotional learning and helps students understand and empathize with those around them, most especially students with autism. The fact that these materials were free was an absolute bonus!” Ferrara is a former member of OAR’s board of directors.  

Jennifer Baccarini, the school counselor for Hillsborough Elementary School, agrees. She delivered the lesson to all K-4 classes with a focus on the importance of empathizing with others, especially those with autism. “With the third and fourth-grade students, we read the book together and really had a nice conversation about similarities and differences. Many of the students have been able to relate to Nick or know someone personally with autism,” she explained. “With the kindergarten, first-grade, and second-grade students, we have been talking about the word ‘accepting’ and what that means, as well as drawing pictures showing what being a good friend looks like. With all the grades, we have also been discussing how we are all different and that is what makes not only [Hillsborough], but the world a more interesting and wonderful place.”  

“I was happy to bring the program before Superintendent Volpe and the Hillsborough Board of Education as OAR continues our community outreach and am excited to have the program implemented in Hillsborough as the first school district in New Jersey to do so,” said Ferrera. 

Promote Autism Acceptance in Your School District

OAR partners with school districts to promote autism acceptance and inclusion. For inquiries about using the Kit for Kids program in your school district, please contact Kimberly Ha, Senior Director, Research and Programs, at 703-243-9762 or via email. 

OAR’s fall 2023 webinar series, Autism in the Workplace, focused on practical strategies, tools, and accommodations for supporting autistic employees. If you weren’t able to make it to the live events, you can access the archived webinars on OAR’s website: 

Live Webinars Highly Rated by Attendees

A total of 390 registrants attended the live webinars. Of the 200 participants who provided feedback, 97% percent reported the content as being helpful and relevant to their needs. One person who attended Lost in Translation: What’s Missing in the Strengths-Based Approach for Autistic Workers webinar said, “This has been one of the best webinars I’ve ever attended. AJ was clear and gave examples.” Someone who attended Autism Inclusion in the Workplace Panel webinar said, “This was truly excellent, thank you to all involved in organizing this, and the moderator and panelists. Amazing job!” 

OAR thanks the presenters and panelists for sharing their expertise on these important topics. 

More Webinars Coming this Spring

Stay tuned for updates on our next webinar series coming this spring. To suggest future topics or provide general feedback on OAR’s webinar program, please contact us at webinar@researchautism.org. 

OAR and the Autism Intervention Research Network on Physical Health (AIR-P) invite autistic individuals and the people who surround them to submit an application for the 2024 Community Grant Competition.

Dedicated to funding community resources that enhance the quality of life of autistic individuals, the Community Grant Competition provides one-time grants ranging between $1,000 and $10,000 to support the production of these resources.

Projects must address at least one of the following priority topics:

AIR-PPhysical Health

  • Primary Care Services and Quality;
  • Community-Based Lifestyle Activities;
  • Mental Health Services or Supports;
  • Health Systems and Services; and
  • Gender, Sexuality, and Reproductive Health.

Adult Services and Supports

  • Transition Planning;
  • Employment and Higher Education;
  • Housing and Residential Supports;
  • Financial and Estate Planning; and
  • Adult Sibling Support
How to Apply

Interested applicants should read the Request for Applications, which includes a list of this year’s project priorities before applying through OAR’s online application portal. The application period closes on April 22, 2024. Winners will be notified in August 2024, with funding provided as early as September 1 and a grant period lasting through August 31, 2025. 

For questions or comments, please email programs@researchautism.org. 

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