Chad Kocian

It’s beginning to look a lot like that time of year when your list of things stressing you out is as long as your shopping list.

Keeping the magic alive during the holidays for families living on the spectrum may mean taking extra time to look at the season through your child’s eyes. Maybe your notions of holidays past belong in the past because those traditions no longer work.

For families dealing with autism, the key to a successful holiday season may lie in your ability to adapt to what works now, even if it’s unlike the holidays of your youth.

1. Talk to your family about what to expect.

Not everyone knows what it’s like to face the holidays when you have kids on the spectrum. When Holly Bird’s grandson was a toddler, her extended family just kept saying her grandson was in his “terrible twos” when he would act out. Her grandson wasn’t diagnosed with autism until he was four. But it was clear from his early days that he would not experience the holidays like the rest of the family, she says.

“It took us a while to get the rest of the family to understand,” says Bird, a retired health counselor in Arizona who writes a blog about her family’s adventures. Her family advised her to utilize disciplinary tactics like “time out” to get her grandson to listen, Bird shares.

It took some communication to get everyone on the same page about how to make holidays successful for the entire family.

“The biggest thing we try to do for the holidays is to make sure the family knows that when we’re together as a family, it isn’t all about the child with autism” and the whole family responding to the child’s behavior, she says. “It’s all of us being calm and …  him just being able to do what he regularly does” in his normal routine.

Bird communicates with family members who are coming in from out of town with a phone call, email, or text message to let them know how they can adjust for her grandson’s special needs.

Katie Koole-McCurdy, a Michigan mom who has two boys on the autism spectrum, started writing about life on the spectrum while preparing for a family reunion several years ago. She experienced the same feeling about needing to communicate what was happening.

Her oldest was three at the time and had sensory issues and needs beyond what her family had experienced.

“I was like: I’m going to go to this family reunion. I’m going to get all these questions, or they’re going to judge that my kid is acting very differently than what is typical,” Koole-McCurdy says. “I have no shame in this. I’d rather just explain to everyone what’s going on.”

Seven years later, she still runs The Maseman, “the musings of two normal parents to two normal boys. Because normal is relative.”

 

2. Change your own expectations.

Successfully handling holidays can start with changing your own expectations of what the holidays should be, Koole-McCurdy says.

“Sometimes, you have to say no to things, and it’s hard,” she says. Sometimes, when she knows they’re invited to a house with 30 people where her boys are going to be expected not to touch anything, it might not go well. So, she might opt out.

“I can’t expect my kids to do things that they’re not able to do,” she says.

Bird knows the struggle.

“It is hard,” Bird says, “because people’s expectations of the holidays have been pounded into our heads for so many years.” Families coping with autism can’t do things the way things have always been done, she says. And that’s OK.

3. Choose the traditions you want to keep.

Expectations also include knowing what’s important to you as a parent, Koole-McCurdy says. She wanted her children to be able to enjoy some of the same family traditions she enjoyed as a child. She had to take time to process and figure out which traditions would work for her kids.

Before kids, she thought she couldn’t wait to try the Elf on the Shelf® tradition of setting a magical elf around the house. After having two boys with autism, she realized that was something they wouldn’t understand.

But she discovered her 10-year-old loves helping to put up the Christmas tree.

“So, we make that time a really special time,” she says. “It’s not something for me that I really cared about as a kid. It wasn’t a big tradition. But my one son really likes that.”

4. Don’t force-feed holiday foods.

Sometimes, Bird’s family orders pizza for the kids’ table to remove some of the stress that comes with family dinners. Her grandson is partial to simple foods, so they don’t make a big deal about it.

“If he eats chicken nuggets for dinner, he’s going to have chicken nuggets for dinner on Thanksgiving night,” she says. “We’re not going to force him to eat something because Aunt Sally brought it and it’s everybody’s favorite dessert and he has to try it. He’s not going to try it. It’s no different than a regular day. He just knows there’s more people around, there’s more noise, and there’s more aggravation.”

5. Have a settle-down spot.

Bird noticed that in her grandson’s school, kids with autism gravitated toward beanbag chairs that were set up in spaces made to help kids calm themselves.

“We’ve started doing that at home,” Bird says, “where there’s an area where if my grandson or one of the other kids feels that they’re angry, they can go sit there and think about it. There’s no tablets, no nothing. They can just sit there and then come talk to me about it. As parents and grandparents, if we could listen more with our eyes and pay attention to what the children are trying to say to us, it would be easier for all of us.”

 

6. Keep something tangible on-hand for your child.

For Koole-McCurdy, a go-to item such as a push-pop sensory fidget toy for her younger son is a good distraction. For her older son, who’s less verbal, she brings an iPad.

Before she was a mom, she might have thought letting a child use an iPad at a party would be rude. She’s let that mindset go.“I have to understand where my son is at,” she says. “He doesn’t have back-and-forth communication skills. For him to go to a setting with a lot of people, he’s not going to converse. It would be so unrealistic for me to have an expectation that you have to sit here and act a certain way when you don’t have the skills to be able to do that.”

 

7. Be mindful of noises.

Sometimes even the sound of unwrapping gifts can be annoying for a child with autism.

Bird recommends games such as seeing who can unwrap presents the quietest. She also tries to help her grandson understand that loud noises usually do not last a long time. And she knows when it’s time to get the headphones out and let her grandson block the noises.

“If it’s in the middle of dinner, give them their headphones,” she says. “Make it a great day for everybody. Don’t worry about what your family is thinking. Worry about when everybody leaves, and you walk out that door from the holiday, that you guys have had a great day.”

 

8. Don’t forget to count your blessings.

So much about making holidays successful is meeting kids where they’re at and starting things small, Koole-McCurdy says.

She doesn’t force her kids to do things they don’t like. She gives them breaks. She gets behind the things they love, like decorations. And she finds things in the community, such as a lights and decorations display they can see from inside their car. She sets an appointment to see the Sensory Santa at the mall and adapts holiday traditions to her family’s needs.

“What’s best for our family is that we’re all in a happy place,” she says.

Flexibility and patience are good gifts to have for yourself, Bird says. They help reveal what the holidays are all about.

“Don’t worry about spending money,” Bird says. “Don’t worry about anything. Just remember that you’re fortunate. We’re blessed to have the holiday and to have these kids in our lives. Because, you know, they’re pretty special. They really are.”

 

To find traditions that may work for your family, consider something tangible. Browse ideas in “Holiday Crafts to Make with Your Child” and “Making Holiday Baking a Success.”

by Ronit Molko, Ph.D., BCBA-D
Strategic Advisor, LEARN Behavioral

Applied behavior analysis (ABA) is widely considered by many professionals and families to be the “gold standard” in intervention for children on the autism spectrum. With decades of empirical evidence to support its efficacy at teaching necessary skills and reducing maladaptive behaviors, ABA is broadly funded by private and government insurance plans and typically supported as the premiere teaching tool for autism.ABA is used more extensively than many people realize. In general terms, ABA refers to the science of teaching and learning or, more specifically, the idea that, over time and through repetition, we can increase behavior that is reinforced, while decreasing behavior that is not reinforced. Corporations and marketing companies use the principles of ABA to affect buyer behavior, just as teachers use ABA to manage students in classrooms. Likewise, ABA is used to train and modify behavior in athletes, musicians, employees, and even animals.

In the autism field, the services market has evolved and expanded, leading to significant variety among ABA providers. Consequently, the term “ABA” has become associated with a broad spectrum of services, some of which do not meet the standards and definitions of true applied behavior analysis.

Additionally, there is growing criticism from self-advocates and autistic adults who received ABA services and now share stories of experiencing PTSD (post-traumatic stress disorder) and trauma from the ABA they received. Stories like these are sad and heartbreaking to hear—and call upon all of us in our field to listen to and learn from the conversations, instead of plowing onward in an obstinate disregard for lived experiences. As a profession, we need to use these conversations to reconsider how we approach intervention, and ask ourselves: are we changing specific behaviors because we determine them to be appropriate or inappropriate or because making this change actually serves the person with autism?

We also need to understand the evolution of ABA over the past 70 years. To understand the evolution, one needs to understand the history, and how we reached the point where some individuals and groups find fault in ABA. In my opinion, we cannot simply declare that old ABA was harmful and bad, while current ABA is helpful and good. If our treatment harms even a single individual, that is one individual too many.

The origins of ABA

Up through the early 1900s, the predominant theories and schools of psychology focused on thoughts and feelings. Dr. John B. Watson, a pioneering psychologist, popularized the theory of behaviorism in 1913. Watson believed that instead of focusing on internal and mental states, the practice of psychology should focus on observable behavior. Dr. B. F. Skinner further developed the theories of behaviorism to describe how we learn—essentially, by describing and researching how our behavior is changed based on antecedents (what precedes a behavior) and consequences (what follows a behavior—i.e., the rewards and punishments we receive).

The principles of teaching using ABA were further defined by multiple researchers in the 1960s, forming the basis of ABA. In the mid-1960s, Dr. Ivar Lovaas developed a program designed to teach language to children with autism, using the principles of applied behavior analysis, with the goal of preventing children from being institutionalized. Lovaas’s program included 40 hours a week of intensive and rigid clinic-based ABA, with the findings of his research demonstrating the efficacy of intensive ABA on teaching language and other skills to children with autism. As a result of this research, early intervention programs were launched, and ABA became more popularized as the best form of intervention.

Nevertheless, at this time, the application of ABA was rigid and unnatural. Children were required to sit through multiple, repetitive drills to learn skills and sequences, and the number of hours of intervention were exhausting. The popularization of his methodology created a mindset among some parents and providers that intervention must be highly structured, rigid, adult-driven, and sometimes, aversive, meaning treatment could involve unpleasant techniques to alter maladaptive behavior.

Evolving practices

Since the early 1970s, however, the world of ABA and the application of the principles of ABA have evolved enormously. Just like in other areas of healthcare, the field has progressed as more research has been conducted and newer strategies developed. ABA has evolved into a much more naturalistic, engaging, play-based, and child-directed form of intervention. In natural environment teaching (NET), for instance, treatment takes place within the ordinary routines of daily living, occurring during mealtimes, playtime, bath time, community outings (like a trip to the grocery store), and other natural parts of a child’s day. This sort of real-life teaching differs extensively from the overly formal, clinical settings of the past.

Today’s ABA programs should be tailored and customized to the needs, values, and culture of each child and family. ABA services need to involve choice-making and person-centered planning, in which each client and family steer and help make decisions about their target goals and treatment, and what fits within their family’s culture. Ultimately, every client and family need to decide what goals to target in therapy, with guidance from the behavior analyst. As in other areas of healthcare, research and best practice standards guide the strategies, techniques, and intensity of intervention. It is the combination of professional expertise and family input that aligns to create the most effective program for each child.

Consider, for instance, a conversation I had recently with the mother of a non-verbal child with autism who communicates regularly with noises one might describe as grunts. A behavior analyst wanted to use ABA to reduce that particular behavior, but the child’s mother did not agree. “Those noises are my child’s language,” she explained. The mother explained further that with each goal presented by her ABA team, she asked these questions:

• Does the goal respect my son’s privacy?
• Does it foster his independence?
• Does it cultivate his voice and self-expression?

The mother, in this scenario, knew what she wanted for her son—and advocated effectively for him.

Other parents I’ve talked to celebrate the skills and capabilities their children gained through ABA services, attributing their children’s gains to the dedication of their ABA providers. Many of these parents stress the importance of making sure the goals and strategies they were advised to use fit with the culture and parenting philosophy of their family. Not every parent or caregiver will advocate in this way or have the time and capacity to manage their children’s program. It’s up to us, as a profession, to honor and respect each client and family’s wishes and values, and to discuss issues related to things like dignity, individuality, and self-expression. It’s up to us to honor self-hood.

As the population of individuals with autism is aging, we now have a group of adults who received ABA services and wants to articulate and share their ABA experiences. I urge my colleagues to stop and listen—and use what we learn to inform the future of services. For example, some adults have articulated that making eye contact is physically unbearable, and, yet, this is one of the core skills ABA practitioners teach as a foundational part of learning.

Given what we’ve learned, it’s time to examine the degree to which each of the skills we teach benefits and serves individuals with autism, despite the fact that we may consider them appropriate social and communicative behaviors. In other words, we need to weigh our own self-interest as a society against what we’re learning from the individuals to whom we’ve devoted our careers.

Stay tuned for Dr. Molko’s upcoming story, where she offers advice on what to look for in a quality provider.

Becky Schoenfeldt, a registered behavior technician (RBT) for LEARN’s Behavioral Concepts (BCI) clinic in Worcester, Massachusetts, spends her days helping kids with autism attain goals on their behavioral health treatment plans. At the end of the day, she goes home to do more of the same, only this time with her 18-year-old son, Dougie, who was diagnosed with autism at age three and needs round-the-clock care.

In a recent interview, Becky talked about her journey with autism, the pitfalls and triumphs along the way, and the lessons learned as both a parent and practitioner in the field. In honor of Mother’s Day, she gives advice to other moms—and all parents and caregivers of kids with autism—about the challenges and rewards.

Q: Let’s start from the beginning, Becky. You were working as a case worker for the Housing Authority, helping families from homeless shelters find work and become self-sufficient, when you noticed developmental delays in Dougie. Tell us about that time period.

A: That’s right. At the time, I spent my days—and nights—helping families get back on their feet after setbacks. I also worked for the Department of Youth Services, the juvenile justice agency in Massachusetts that serves kids and teens who were arrested or charged with an offense. The work wasn’t easy and required late shifts. When I became a parent, I knew I couldn’t keep working there because of safety issues related to the challenging behaviors of some of the kids. I had three little children close in age—technically, Irish triplets. Dougie and Stevie, my twins, have a sister Alli who is only 11 months older. I had my hands full.

Stevie and Alli are neurotypical, so I noticed certain things were different with Dougie. Instead of crawling, he would scoot on his butt. He wouldn’t respond to his name or loud noises. We would bang pots and pans and get no response. He also didn’t make eye contact or speak. But he was sweet and adorable. Once he started walking, he would take us quietly by the hand and lead us along. He was a happy boy.

Often, I brought up my concerns to family and friends, and they would say, “Don’t worry—he’ll eat [or walk or talk] when he’s ready.” The pediatrician kept saying, too, that twins do things at their own speed, that I shouldn’t worry. But I knew in my heart something wasn’t right.

Q: What was it like getting the diagnosis?

A: We were prepared and knew it was coming, but it still felt like a kick in the gut to hear those words. I worried about his future, his present—everything. And then I realized: parents of newly diagnosed kids can either wallow in self-pity or start supporting their child so he or she can live the best life possible. That’s what we did—we were proactive and started supporting Dougie.

We lived in Connecticut at the time and enrolled Dougie in preschool, thinking it would be a good opportunity. When I picked him up from school one day, they told me he had eaten rocks—as though that was normal behavior for a child. “What do you mean, he ate rocks?” I asked them. They said it wasn’t so unusual, but I didn’t believe them. I worried about his safety.

We decided to move to Massachusetts, where my mother-in-law worked as a teacher in a local school district. We had high hopes for Doug’s first school in Massachusetts but came to realize our son needed more support than the school could provide, despite their best intentions. Sometime after kindergarten, Dougie spotted a red jeep in the parking lot that looked like his grandmother’s car. Thinking it was, in fact, his grandmother’s car, he bolted out the door, somehow getting past several staff members—six of them, I was told. How could a kid bolt past six staff members? Why couldn’t they protect my son?

For a long time, Dougie has had an issue with bolting. Even today, if he sees something as ordinary as a squirrel across the street or a holiday decoration nearby, he might take off. He doesn’t have the safety skills.

Q: Did you end up keeping Dougie at that particular school? What was your relationship like with the school staff?

A: We realized the regular public school wasn’t right for him. They wouldn’t allow him to use noise cancellation headphones or other coping mechanisms, like a weighted scarf or blanket. Their attitude seemed to be: if you can’t change the environment, you change the kid. But it was more the environment that needed changing, with so many noises and the constant bells ringing and beeping, the harsh lights, smells, and crowds. These things really bother kids on the spectrum.

We tried to get Dougie placed out of the school and put into a more supportive set up, but that would have cost the school district money they didn’t want to pay. Plus, they would have had to admit that they couldn’t manage Dougie, which they didn’t want to do. So, it was an all-round bad situation.

Growing up, Dougie had severe self-injurious behaviors (SIBs) like head-banging or hitting his head. He often did this on the school bus, and the bus monitors weren’t trained to handle it. I had to leave work several times to pick up Dougie from school, especially in 6^th grade—that year was horrible. But the school principal was great, and knew we needed something different. We ended up hiring a lawyer to help us get the school district to “outplace” Dougie, meaning they paid for him to attend another school. It worked, and that was the best $350 we ever spent.

Q: That sounds like an incredibly rough year. What happened next? How did you get Dougie the help he needed?

A: Around the time, I had retrained in my career and worked as a behavior technician for BCI. It was stressful because I kept having to call out of work to take care of Dougie. I finally went to Dr. Robinson, the founder, and asked if Dougie could get a spot in a social skills group at BCI. We worked out an arrangement, and Dougie started ABA therapy.

Eventually, with the help of Dr. Robinson and the lawyer, we secured a spot for Dougie at a school for kids with autism, the Center for Applied Behavioral Instruction (CABI), in Worcester, and that has made all the difference. He has one-to-one attention, a highly-structured routine, and only six or so students in the classroom. He’s a happy kid now—a completely different kid now. He’s doing geometry. He works as a cashier in the school store. Best of all, he actually seeks interaction and even physical contact, like a hug, from people he trusts.

He also discovered he likes art. Just like his dad, Dougie is a talented artist. He loves to draw on whiteboards, and loves to draw Sonic characters.

Q: CABI seems like a great place. Have you thought about life after CABI? How long can Dougie stay there?

He can stay at CABI for four more years, until he ages out at 22. It’s gone by so fast. My husband and I both have to work, and we’re not sure what we’re going to do. We’re looking at day programs because Dougie will still need structure. But I want him to do more than bag groceries at Shaw’s. I hope he can find a job and do something related to art, something he’s passionate about, though I wonder how he can hold down a job if there’s a loud noise, like a baby crying. He would need an understanding, supportive work environment.

I worry about Dougie getting older—and me getting older. I don’t want him to end up in a residential program. For many people who work at those facilities, it’s just a babysitting job. But it’s far more than a job. It’s someone’s life you’re molding.

Q: Yes, it’s an opportunity to really influence and mold, as you say, an individual’s character—a person’s whole life, really. What has it been like for you, as a mom and an RBT?

A: Helping kids and families with autism is who I am and what I do. I’ve finally found something I enjoy, and it’s nice working with families. I never dread going to work because when I open that door, I know I’m a positive reinforcer. The other week, one of my kids fell asleep during a session, so we had to reschedule. Then I didn’t see her the next week because of Dougie’s spring break. When I finally got to see her, she gave me an enormous hug. That’s pretty rewarding.

When we had to go full remote with COVID, life was a rollercoaster. Dougie adjusted well because I set up his environment and work area similarly to school, with his visuals and sensory objects in place. We followed his treatment plan and kept making progress.

Q: What advice do you have for other moms or caregivers raising kids with autism?

A: I see a lot of single-parent families, mostly where it’s just the mother. That’s not easy, especially if there are other kids in the family she has to care for. When parents have their own personal problems they’re dealing with, that can make it difficult to support the goals of therapy at home. But that part of therapy is so critical—learning has to continue in the home environment.

The advice I can give other moms and parents is to build your support network. It might take work, but the effort is worth it. Also remember that no challenge is too big, and no victory too small. I like a challenge and decided to rise to the challenge of raising Dougie and two other kids, while helping kids in my job. It’s not easy, but it’s my life, and I wouldn’t trade it for anything.

Q: With your busy schedule, how do you practice the important art of self-care? What will you do for fun this Mother’s Day?

A: For self-care, I make every moment count, even when I’m at the grocery store. Sometimes, I just enjoy the quiet of walking down an aisle alone, getting to think or move at a slower pace for a moment. This summer, I’ll go to the zoo and water park with my family. We’ll get outdoors and do some of the things we couldn’t do last summer because of COVID.

On Mother’s Day, I’ll be with my family, but the weekend before, my daughter, Alli, will be home from college—she goes to Roger Williams University in Rhode Island. On Sunday, I’m taking the two of us to get our nails done. It’s an early Mother’s Day present before she has to go back to school.

As parents and caregivers, we’re hard-wired to respond to our children’s cries with efforts to comfort and soothe. Nothing is more frustrating, however, than when our efforts fall short—and our child spirals into a meltdown. What can help? In a few words: a calm-down kit.

A calm down kit is simply a collection of objects and items to help children cope with their emotions in a positive and safe manner. Also known as sensory integration boxes or toolkits, each calm-down kit can look a little different, depending on the needs and interests of your child. Of course, you can buy preassembled calm-down kits online, but your kit won’t have the magical ingredients that can comfort your child (aka, the objects and items your child loves), and often, these kits don’t take into account things like ages and sensory needs.

How, then, can you create your own calm-down kit to soothe your child’s sensory system during a meltdown? Here’s a breakdown of what to include—and how and when to use the kit.

What to include in your kit

As a parent or caregiver, you know your child best. Ask yourself these helpful questions:

• What soothes your child when restless?
• What usually calms your child down?
• What does your child like to do?
• What are your child‘s favorite items?

Gather together an assortment of items generated from the questions above, along with objects that cater to various senses, such as sight, sound, touch, and taste. For instance, you might include:

• A weighted or soft blanket, which can help kids who respond well to deep pressure receptors.
• Fidget toys that can occupy the mind and fingers by giving kids something on which to focus.
• Noise cancelling headphones, which can provide the peace and quiet kids need during a sensory meltdown or outburst to calm their bodies.
• Bubbles, which can help kids take deep breaths for relaxation, without realizing it.
• Chew toys to provide oral sensory support and help some children focus and manage feelings of anxiety and sensory overload.
• A stress ball to squeeze and release anger and overwhelming feelings.
• Plastic baggies full of various materials like kinetic sand, oatmeal, pasta, pine nuts, or rice, which can satisfy cravings for tactile stimulation.

How to use the calm-down kit

Once you have the items, place them in a backpack or cloth bag, and take the kit with you in your car or on the go. Then, once a sensory meltdown starts, use the items either to refocus your child’s attention and lessen the magnitude of the meltdown after it begins. Keep in mind, too, that  you can use the kit anytime, even during typical downtime. Using the calm-down kit during downtime will serve as practice and enable your child to figure out what items help in times of distress.

Again, the goal of the calm-down kit is to give kids the tools they need to transform their inner state from upset to calm. These kits can make all the difference, not only for your child but also for  you, as a parent or caregiver.

Want to learn more about sensory issues? Listen to our podcast, “How Lighting Can Affect Your Circadian Rhythm,“ on All Autism Talk.