The Westview School Blog
It has been said that you spend more time with your siblings than anyone else. It is one of the most formative and longest-lasting relationships a person will have. It is estimated that by age 11, siblings have spent more than 33% of their spare time together. When one of those siblings is on the autism spectrum, it is possible that the amount of time together may not differ, but the sibling dynamics certainly could.
Big sisters become little mothers. Big brothers become protectors. Younger siblings learn to be helpers. When a sibling is diagnosed on the autism spectrum, older and younger siblings tag along to therapy appointments and commutes to special schools. They become aware of differences between themselves and their siblings very early on. However, the differences and awareness that come from having a special needs sibling can often positively influence both the neurotypical child and the child with special needs.
Despite the dynamic shift, when children on the autism spectrum have a sibling in the home, it has been shown to positively affect the special needs child. Neurotypical siblings can provide increased opportunities for social skills in the home and serve as role models to siblings with special needs.
But, what about the sibling without a disability? Having a brother or a sister with special needs, in a way, can be pretty similar to having a typically developing sibling. There are the expected challenges among siblings – bickering, rivalry, learning to share, but overall, siblings of children with a disability, including autism, have a great capacity to be highly empathetic, compassionate, tolerant, and responsive to the need of others.
The Westview School blog interviewed several Westview staffers who all arrived in a special education career after growing up with a sibling with special needs. We asked them to share their experiences, how it shaped them as adults, and advice on the positive impact having a sibling with specials needs has had on their life and career in special education. We hope that by sharing their stories of growing up with a special needs sibling, our families may see the positive influences a sibling with special needs can bring to your child’s life.
Caelyn Pho is a Pre-kindergarten teaching assistant at The Westview School. She is the oldest of seven siblings. Caelyn’s youngest sister, Meagan (13), was diagnosed on the autism spectrum at four years old.
“I was twelve when my sister was born,” said Caelyn. “She was not diagnosed early, so I do hold a little bit of guilt, especially since working here. I realized how much more she struggled because of the delay.”
“I come from a very traditional Vietnamese family. Our culture's instinct is to protect,” said Caelyn. “It was more challenging during her younger years before our family learned the skills and strategies to be able to properly deal with her tantrums or other challenges.”
Lexi Doré is a Kindergarten teaching assistant at The Westview School. She is the only sister among four brothers, three older brothers and one younger. The two brothers closest to Lexi’s age are twins, Dalton and Dylan (24), and were born with cerebral palsy. Lexi’s younger brother Bouxdie (11), affectionately called Boux, was diagnosed on the autism spectrum at two years old.
“We got a pretty concrete answer that Boux was on the spectrum when he was two. He wasn’t talking, and he had a lot of food sensitivity.” Lexi remembers the early years of speech therapy and occupational therapy.
Jared Dawkins is the Upper Elementary and Middle School science teacher at The Westview School. He is the middle child of three siblings. His younger brother, Jacob (20), was born with Down Syndrome.
Jared’s experience with special needs started years before his brother was born. “My dad had a cousin, Kevin, with Down Syndrome, so we were very familiar with it already,” Jared said. “From a young age, we were taught that Kevin was different, but he was still part of this family, and we should treat him the same as every other family member.” Jared learned about his brother’s diagnosis before Jacob’s birth. “My mom knew before Jacob was born, and I remember being told that he was going to be like Kevin,” said Jared.
How has having a sibling with special needs positively impacted your life?
Caelyn: I know that Meagan has influenced me and made me more empathetic and compassionate, and understanding to people who do have challenges. Because of my experience with Meagan, I never hesitate to reach out if I see somebody struggling. I never mind helping. Without judgment, there is just a simple, “Oh, you look like you need help.”
Lexi: I have always been an empathetic person with a big heart, but I think that all stems from my special needs siblings. As I’ve grown older, it has become more of a part of me, and it is something I pride myself on, being empathetic towards others. I know how it feels like to be different, and I try my best to accommodate people in how they want to be treated. Because of my experience, I pass that thinking on to my friends and everyone around me. They are just like everyone else.
Jared: Language is a huge issue for my brother, Jacob. He is twenty now, and his language is far less advanced than anyone he communicates with. Communicating with Jacob was learned through sibling dynamics. It comes second nature to our family. This ability to communicate is one skill that has served me well at Westview. Some of our kids seem unapproachable, but I find it very easy to get through to them and understand them.
How did growing up with a sibling with special needs lead you to a career in special education?
Caelyn: My sister is the absolute reason that I started working with this population. If it were not for her, I would not have found my passion, and I will be forever grateful to her. I feel bad for my friends who are miserable at their jobs, and I get to walk in every day, make a huge impact, and love it. That is all thanks to Meagan.
Lexi: I have always had a heart for people with special needs because of my older brothers, but especially when Boux came into my life. I was already volunteering at camps for children with CP. Knowing Boux and how beautiful his mind is and interacting with his classmates on field trips, I wanted to interact with more kids on the spectrum because they are so different, but they are all beautiful and unique. I just wanted to see life through their eyes, and being more hands-on with them is the best opportunity for that.
Jared: After finishing my undergrad degree in English Literature, I enrolled in Texas Teachers to earn my alternative teacher certification. One of the school counselors recommended special education “to boost my resume.” Westview was a perfect fit. I am still learning how to be a teacher, but one thing I didn’t have to learn how to do was learn how to approach and interact with our students. It can be challenging to find people who can interact with our kids in a meaningful and genuine way, and I had that experience already.
What advice would you give to siblings of children with special needs that you have learned from your family’s experience?
Caelyn: There was always a heightened sense of awareness that my sister was different when we were out in public. I was uncomfortable having an audience during an already stressful moment. As a young girl, this would make me angry when I noticed other people minding our business. As I have matured, I have learned to channel that negative energy into help and support for my family and sister. They are what matters.
Lexi: My best advice is, ‘Give yourself the love that you give to others.’ It is important to recognize that it is okay to focus on yourself sometimes, and I am learning this more and more as I get older. You don’t have to feel guilty for taking care of yourself and your needs. Help your sibling. Help your parents as much as you can but be patient with yourself and treat yourself like you treat your siblings.
Jared: It's essential to treat a special needs sibling as normal as possible. It is the only way I know how to interact with people with special needs, be patient and considerate of their particular needs, and treat them as typical as I can. For example, one thing I'll do is if we tell a joke in a family setting, my brother will ask what was said. His language may hinder him from fully understanding the joke in the same way, but just him receiving that information makes him feel like part of the group. In my experience, it's better for me, and my brother enjoys it more when we include him in the game.
What do you love the most about your siblings?
Caelyn: Spoken language can be challenging for Meagan, but she can sing a whole Frozen song without thinking about it. We are a very musically inclined family, so there is lots of singing and dancing for every family get-together, and Meagan is the star of the show. Meagan will start singing along, and she loves to dance. For this reason, she has become one of the pillars of our family just by being there. She reminds all of us to be in the moment. When we get together, we are all pulled in and connected.
Lexi: Boux wins over everyone that he meets. All my friends have this love for Boux. He is just the best person ever. He’s my best friend. Boux is one of the brightest, smartest, coolest people I know. Even though he is not able to convey through words that he loves me, the look on his face, when I walk into a room, I know that I am his best friend too. He teaches all of us that you don’t need words to express how much you love. Love goes beyond words.
Jared: His love for my dogs. I know Jacob loves me. He asks about me when I’m gone, and he likes to hang out with me. I do not doubt how much I mean to him, but my dogs mean more. We have a blast when I come over, and he will want to hang out with me, but if I show up without the dogs, his first question is, ‘where’s Sam?’ I am always second to the dogs.
The Westview School’s mission is to provide a unique, specialized learning environment offering outstanding educational and social opportunities for children on the autism spectrum. We believe that children with autism spectrum disorder can grow and learn through a nurturing, positive, and happy environment that enhances their self-esteem. This is attainable for our students because of the dedication of our faculty and staff. The Westview team is comprised of seventy members, each of whom was led to our special school for varying reasons with a similar underlying theme — a love and passion for the children on the autism spectrum and a willingness to make a difference in the life of a child. For Caelyn, Lexi and Jared, this experience is a bit more personal, and our school is better because we have them as part of our staff.
The behavioral therapist who assessed Julian in October 2010 spent two hours alone with him, took into account his developmental delays and inappropriate behaviors: the pushing, spitting, lack of engagement, and severe language delay; the crashing, breaking, food sensitivities, and meltdowns. Once I joined them, the therapist and I talked as Julian played with a vibrating train. He held the train by a thin string for twenty minutes, lifted the train up high, near the left side of his face, and moved only his eyes, shifted them hard left so he could stare at the bright red blur in his periphery. Perhaps he loved the leftward pulling sensation behind his eyes, the string vibrating in his small hand. Maybe it was the change in perspective as he held the train so close he was able to blur the separation between him and the shiny inanimate object.
Near the end of our session, the therapist smoothed the paper on her desk with one hand, looked at me, and said, “I believe Julian is moderately autistic.”
Her word choice struck me immediately. She hadn’t said “mildly” or “severely.” He wasn’t a little or a lot autistic. He was, according to Webster’s College Dictionary, “within reasonable limits…of average or medium quality.” Was there a reasonable level of disability?
“You do?” I asked because I’d hoped for anything but that, and in my denial, had become certain Julian only suffered from apraxia of speech. Now I needed a minute to recover enough to mask my devastation.
“I know this can’t be easy for you,” she said, and I lost my resolve not to cry.
At that moment, the Julian I knew – three years old, flirty, quirky, affectionate, in love with movies, cows, and alphabet letters – was gone. In his place stood a little boy from another planet, a familiar stranger. I’d just handed my former son over to a medical statistic, another 1 in 42 boys.
Almost overnight, a whole new existence formed, a parallel world that looked like earth but wasn’t. It was full of specialists with names like Toshio, Toodie, and Tempa, like Lion, Scarecrow, and Tin Man. It was a sudden ambush of therapies I’d never heard of, long drives, too many forms to fill out, and appointments every week.
I didn’t sleep much. I’d wake in a panic at 2 a.m. and tiptoe into his room to watch my newly foreign child sleep. Grief sometimes took an unusual turn. Though I didn’t notice right away, my husband and I had stopped making videos of Julian and his sister, Victoria. We were still learning what autism was, but we perceived it as a loss, as the erasure of a person we thought we knew well. In essence, this meant one of our children had died, and it felt wrong to record the empty space.
But Julian was very much present; it was his parents who were lost. Still, there was an amorphous loss. Julian wasn’t blind or missing a limb. There was simply no way to truly name or measure what was lost, to label precisely what we were learning to accept. No one could tell me where we’d be in twenty years, what to expect.
If I asked for his name, he told me his age. If I asked his age, he told me his name or launched into a slurred rendition of the alphabet song. At almost four years old, his longest self-composed sentences were two words; he knew about six of these short sentences. His enunciation was awful; therefore, I was one of only a few people who could understand him. He could ask for juice or a toy, but he couldn’t tell me when he was sick, sad, tired, or hurt. He couldn’t tell me he loved me. He couldn’t answer most questions. He didn’t understand words like What, When, Where, How, and especially, Why.
I read countless articles and books about autism, searching for any window into my child, for a cure if one existed. Where were we going with so many hours of therapy, and when would we get there? I asked doctors, teachers, and therapists ten million questions, and still, no one could explain what was lost and whether we’d find it again.
Autism was a social communication disorder with repetitive behaviors, but beyond this general description was a wait-and-see prognosis for every unique child. There was no way to predict what his future would look like. We would have to learn as we went along, accept the trial and error of various therapies, diets, and doctors. His brain was structured differently, not erased. So not only would we need to teach Julian differently, we had to relearn him.
Although he couldn’t use a spoon, hold a pencil, drink from a cup, sit still, or play with other children, I saw a spark, a hint of a brighter light that was, for now, obscured.
Would he ever read? Write? Sit still? Potty-train? Would he be able to work? Was independence the ultimate goal?
Julian had many challenges, but language was especially difficult. Even though his speech became clearer and he began to memorize entire movie scripts, he still struggled to compose his own sentences.
Then he began using movie lines to communicate with us effectively, but still, how could he achieve independence with “movie talk”?
In 2016, I heard about Owen Suskind, a young man with autism who used Disney animated movies to express complex emotions like love and loss. In both the book and documentary film, Life, Animated: A Story of Sidekicks, Heroes, and Autism, his father, Ron Suskind, explained his support of Owen’s Disney obsession by describing why he communicated with his son using puppets and silly character voices, encouraged Owen’s drawing of favorite characters, taught coping skills by applying lessons learned from Disney films to everyday life. He summed up his reasoning with a single sentence, “Whatever works to get to Owen.”
Whatever works to connect…
After learning about Owen, I threw everything I had at Julian’s obsession with movies. I bought the DVDs as soon as they were released, and the small character figurines. I allowed extra time on his iPad, let him watch movies in the car. Soon not only did he tolerate holding a pencil, but he also showed an interest in drawing. So I gave him colorful pencils, crayons, reams and reams of paper. Soon it was evident that he loved drawing, and I noticed that no matter how crudely drawn his characters were, their facial expressions were clearly nuanced. By watching the same movies over and over, he’d taught himself to draw feelings, and all he couldn’t capture in words.
He drew family members and school friends and always included himself as a central character, a protagonist in every adventure. He clearly expressed feelings, motivations, and even abstract thought in pictures. He drew complicated family dynamics, like the day he was born, and inadvertently “replaced” the former “baby of the family,” how that must have made his older brother feel sad. In this instance, he drew the reactions of each family member to fit their individual personalities, which included his oldest sister rolling her eyes at all the birth order drama. This told me he understood complex issues far better than he could convey with words alone. He had empathy, imagination and paid close attention to how people felt and interacted.
Julian once drew a picture of himself as an adult sitting before a computer, working in animation. That was the future he imagined for himself. As The Westview School taught him to read and spell, Julian began drawing “thought bubbles” and writing dialogue. His hand muscles grew stronger, and he developed greater endurance. The kid whose hands were once too weak to hold a spoon or pencil, the kid who hated reading and writing, was now writing books. He plagiarized in the beginning as he copied the drawing style and stories of his favorite author, Mo Willems. Then he inserted different characters, changed up the stories, and made them his own.
He sometimes drew fifty or more pictures in a single day, stacks of pages all over our house. We encouraged him every step of the way, and as much as I hate clutter, I knew we were on to something. So I saved every picture, even the half-drawn pictures, and what might be considered “failed” efforts. My instincts told me we had to attach meaning and value to these drawings, so Julian saw that we respected him and his “work.” His skill and confidence continued to grow.
Now at age fourteen, he’s making stop-action films using Videoshop and Garage Band to create the accompanying music. He’s using more sophisticated animation techniques, making his own music, telling his own stories with both colorful imagery and words. And that initial spark I saw in his eyes? It was creativity and a wicked sense of humor. The kid knows how to entertain.
Throughout these many years of learning to tell his own stories with pictures and words, one thing has never changed: Julian wants us to notice. He wants to show us his creations. He wants to connect. I think that’s what we’re all trying to do in everything we do, connect.
Will he manage to turn these skills into a career? Maybe. But more importantly, he’s proud of himself. He feels a sense of accomplishment. He has confidence and uses art to connect with others. Without his identity as a creative artist, he wouldn’t have as much faith in himself to stand on his own.
A few weeks ago, Julian knocked on my office door, “Can we talk?” He didn’t need anything; he just wanted to sit on the floor in my office and chat. This was new, his wanting to talk about nothing in particular.
I went with it, and suddenly he was asking me what kinds of things I worried about, what life was like for me when I was his age, what kind of kid I was, and was I happy as a grownup? It was evening now, and surely his ADHD medicine had worn off, yet he was so calm, so focused on my responses. He kept asking, and I kept answering, following his lead, our conversation stretching over five, ten, fifteen minutes, uninterrupted. We stayed on track. His thoughts were organized, one after the other, moving along a trajectory that was his alone.
It wasn’t scripted. I didn’t know where this came from, my son, who’s now taller than me wanting to know his mother better, to venture away from his comfort zone of animation to have a real conversation, to connect in a novel way. I felt like I was tiptoeing into his room again at 2 a.m., only now it was to watch him wake up, all on his own. I didn’t want my excitement to get in the way. Because at that moment I was the subject of interest, he held up close, seeking a new perspective, blurring the separation between us.
Teresa Cortez has been a Westview parent since January of 2011. She’s a mother of four and resides in Richmond, Texas.
Are mealtimes a battle? Does your child have a limited food repertoire or only eat one brand of food? Desperately seeking tips for a successful family mealtime? The Stewart Center has some Picky Eater experts on staff to share their favorite tips and best practices from hands-on experience working with some of the pickiest eaters and their families.
The first question many families ask is: Who can help? Eating is a multisensory experience. As adults, we forget the many factors involved in eating because it is such a routine task for most of us, but eating is a surprisingly complex process. Both speech and occupational therapists can play an essential role in supporting positive change in even the pickiest of eaters.
Abby Cook, M.S. OTR, and Alexandra (Ali) Nevins, M.S., CCC-SLP are part of The Westview School's Stewart Center team and are trained in the S.O.S. Approach to Feeding®. This approach is a sensory-based feeding intervention that moves students through a hierarchy of exercises designed to increase tolerance of various foods. The S.O.S. Approach to Feeding® was developed by Dr. Kay Toomey over 30 years ago. Her program has a high success rate in the diversification of diets of picky eaters.
Because eating uses every sensory system, from visual and tactile to vestibular and interoception, a multisensory approach to feeding therapy is the start to a recipe for success. Pun intended. The Stewart Center therapists are trained in evaluation and assessments and the facilitation of individual and group feeding therapy.
When it comes to feeding therapy, a speech therapist, like Ms. Ali, can assess and support the development of a child's oral motor and feeding skills, mechanisms of chewing and swallowing, oral motor structure as well as protecting the airway during the swallow, biting, and chewing phases of eating.
An occupational therapist (OT), like Ms. Abby, can help to develop a child's fine motor skills and coordination needed to move food from plate or hand-to-mouth. Skills such as grasping, utensil use, postural control, and musculoskeletal strength for positioning during eating are necessary for successful feeding. An O.T. can also observe and assess environmental factors, modify or make changes to support optimal focus and attention to eating. Both speech and occupational therapists will consider all of these factors when working with children with food aversions to identify how to best help an individual child.
Today, we want to offer some quick tips that you can implement at home now. When dealing with a picky eater, it is essential to examine three things – the environment, language, and behaviors we model. Start with a quick check by asking yourself these questions:
- Is there a smell or taste that is overwhelming or underwhelming to your child?
- Is the environment overstimulating?
- Is there background noise during mealtimes, such as television or music?
- Does your child have the opportunity to watch a sibling or parent eat and model typical feeding behaviors?
- Can your child manipulate a utensil successfully?
- Do you find yourself saying two more bites, and then you can go (i.e., play, watch tv, or play the IPad).
Try these tips to skip those mealtime battles and help your kiddo expand their palate and self-feeding skills.
Set Up for Success: Check Your ENVIRONMENT
- Seating tops the list of important environmental factors for a successful mealtime. Think 90-90-90. Hips, knees, and elbows should be at 90-degree angles while seated for eating. Stick to a sturdy chair or highchair at the table.
- Provide appropriately sized utensils at mealtime, and use fun phrases to initiate utensil use during mealtime like "Catch the food on the fork."
- Keep food portions small – especially with new foods. The new color, smell, or texture may be overwhelming! Always provide at least one familiar food item for your child to eat. Make sure to have some new options to try exploring, but a safe food should be just that - one that feels "safe."
- Keep regular mealtime routines to lower stress and keep expectations clear for everyone.
- Have your child throw away their uneaten food items in the trash. This gets them one step closer to interacting with food, even if it is to throw it away.
- Limit both visual and audible distractions during mealtime. Television, music, and iPad can detract from your child's ability to observe typical eating and self-feeding.
- Model it! Eat meals together as much as possible. Children need to see visual models of typical eating behaviors.
Hungry for LANGUAGE. While your focus may be on what should be going in your child's mouth, what comes out of yours matters just as much.
It might be time to flip the script if you have said one of the following to your picky eater: "Clean your plate." "You have to take two bites to leave the table." "Good job eating that." "Finish your food before (i.e., T.V. or Dessert)." These phrases can unwittingly up the anxiety during mealtime.
Instead, use some alternate words/phrases that keep mealtime stress-free and fun.
- In response to, "I'm not going to eat that!" ask, "What can you do with the cheese stick?" It helps to give an example: "Can you make a mustache or wiggle it like a wobbly worm?"
- "What can you catch on your fork?"
- "Does that food have a big flavor?"
-Encourage your child to say, "I'm still learning about that." instead of "I don't like that!"
Your mother may have said, "Don't play with your food!" but when it comes to a picky eater, it might be time to change your BEHAVIOR around eating.
- Model eating and be PLAYFUL! Make food fun! Make it ok to "play" with your food. Parents can model food interactions that go beyond simply eating; encourage play during mealtime. Some examples of play can include: placing food on body parts, making a noodle into a worm, using crackers to build a sandwich, digging for gems in jello or pudding, and using food as a mustache or a long tongue.
- Avoid forcing your child to take a bite or a drink of something. This sets up an unwinnable power struggle.
- Avoid tricking your child with foods or beverages. As therapists and parents, we need to build and maintain a child's trust-related to food and drinks. When we "sneak" a new vegetable or drink into a familiar dish or a preferred cup, it can disrupt trust and turn a child off from a preferred food altogether.
We hope that these tips help you gain confidence and avoid some pitfalls at mealtime with your picky eater. If you want to learn more about Individual or Group Feeding therapy, please reach out to The Stewart Center. Our team is passionate about working with our picky eaters, supporting their families, and having fun with food.
Parent & Caregiver Workshop (Free Full parent workshop video)
Learn from Dr. Toomey (the founder of the SOS Approach to Feeding) about why children don’t eat well and practical strategies for improving mealtimes in your home through the introductory video “When Children Won’t Eat (and how to help!).
Alexandra (Ali) Nevins, M.S., CCC-SLP is a Licensed Speech-Language Pathologist with the Texas Department of Licensing and Regulation and obtained a Certificate of Clinical Competence through the American Speech-Language-Hearing Association. Ali completed her Bachelor of Applied Science Degree from The University of Mississippi and received a Masters of Science in 2018 from Yeshiva University at The Katz School. In New York City, Ali worked as a clinical extern in the school system as well as at New York Neurogenic Speech-Language Pathology, P.C. Ali has been working full-time as an SLP at The Stewart Center at The Westview School since 2018. She has received continuing education training in SOS Approach to Feeding ® and Social Thinking ®.
Abby Cook, M.S., OTR is a Licensed Occupational Therapist with the Texas Board of Occupational Therapy Examiners and obtained certification through the National Board for Certification in Occupational Therapy. Abby completed her Bachelor of Arts degree in Psychology and Family Studies at St. Olaf College in Minnesota, and received a Master’s of Science in Occupational Therapy from the University of New England in Portland, Maine in 2017. Once in the Houston area, Abby started her OT career in Early Childhood Intervention for Brazoria County and has been full-time with the Stewart Center at The Westview School since 2018. Her continuing education training includes SOS Approach to Feeding ® and introductory coursework in The DIR/Floortime Approach®.
The Why, What, and How of Dealing with Anxiety in Autism
The Texas Winter Storm of 2021. It was the coldest day of February in over 120 years. We had no heat, no power, and our electronics were starting to lose their charge. It would be 36 hours and another 24 of intermittent outages before the power and heat stabilized, and still another 48 before the freeze was done. Somewhere around the halfway point, with indoor temperatures dipping as low as 45 degrees, I sat in the dark filled with worry about keeping my family warm. I couldn’t help but think, “this is anxiety.” I felt it, which meant my son Noah, felt it too.
Noah is thirteen and on the autism spectrum. If you asked him what his fears are, he would list, in no particular order: fire drills, crazy arcade games, extreme temperatures, and dark rooms with unexpected noises. The ice storm that kept us extremely cold and in the dark for three-plus days created the prime elements for significant anxiety for my son.
A few weeks before Texas was blindsided by this epic winter storm, Westview EDU hosted Dr. Sarah Mire, an Associate Professor at the University of Houston’s School of Psychology doctoral program and Associate Chair for the Psychological, Health, and Learning Sciences Department. Dr. Mire presented her “Parent Primer to Understanding Anxiety in Autism and Helping Kids on the Spectrum.”
If you are reading this blog, it is a safe bet that you, too, are a parent of a child with autism. According to Dr. Mire, anxiety in autism is the most common mental health problem in children and adolescents with autism. Some research suggests that up to 80% of kids diagnosed with autism spectrum disorder may also meet the criteria for an anxiety disorder. The risk for elevated anxiety increases as these children get older. IQ matters too. Kids with average or higher IQ scores often have higher anxiety than peers with autism who have lower IQ scores.
So, my sweet Noah, age thirteen, with a high average IQ and being diagnosed on the autism spectrum, was what Dr. Mire described as “meeting the criteria for the elevated risk of anxiety.”
The truth is, our family did okay during the freeze. We were lucky. No pipes froze. Our home wasn’t damaged. Aside from the minor inconvenience of being left in the chilly dark for quite some time and boiling water for a week, we did okay. The most challenging part of the experience was managing my son’s anxiety. As many residents of the great state of Texas have shifted focus to how to better prepare for the next time a major disruption occurs, it may be helpful for us to learn some of the information and strategies that Dr. Mire suggested in her Westview EDU presentation.
What Dr. Mire had to say about anxiety - our response to it, what is proven to help, and how to implement it in our own homes - may be just the thing to pack away in our emergency preparedness kit, so we can go from being just okay to crushing it the next time an unforeseen event is laid in our path.
Let’s start with the WHY. Why does my child with autism suffer from anxiety?
Dr. Mire suggested several theories as to why up to 80% of children on the autism spectrum also suffer from some form of anxiety. These reasons include:
- Kids with autism recognize their differences from peers.
- They have heightened sensory responsivity, which can be disconcerting.
- Interpreting something as a “threat” when it may not be a real threat.
- They often have negative expectations and beliefs and tend to self-blame.
- Kids may have automatic negative thoughts.
- Kids with autism often have an intolerance of uncertainty, heightening anxiety and laying a foundation for anxious responses.
Anxiety happens. WHAT does it look like?
The three F’s of Anxiety: Fight, Flight, or Freeze (No Pun Intended)
According to Dr. Mire, anxiety is adaptive and necessary for survival. As humans, we all experience it in some form. When we interpret something as dangerous, our body kicks into motion physiological responses, autonomic nervous system responses, and life-preservation responses. Something must be done to keep us safe. In understanding anxiety, we also see that it exists on a continuum, meaning it can seem similar from person to person, but individual extremes can be very different. Dr. Mire states that research shows that most people react to a threat by either fighting, fleeing (running in the opposite direction), or freezing.
Dr. Mire notes that anxiety is multi-dimensional; it can affect physiology, thinking patterns, emotions, and behavior. High negative emotions combined with high physiological hyperarousal results in anxiety. Dr. Mire emphasizes that self-regulation is a critical skill. Challenges in self-regulating one’s body, thoughts, and behavior can lead to other things going awry. Dysregulation of emotion is common to both anxiety and autism. The good news is that new thought patterns or replacement thoughts can be learned, which can positively influence emotions, thereby decreasing anxiety.
During the winter storm, I was spurred into action. Dr. Mire would call this a “fight” response to anxiety. I gathered blankets and flashlights, checked and double-checked dripping faucets, and entertained the Wi-Fi-less kids with endless games of Spot-It by candlelight.
Noah’s anxiety was different and more dysregulated. More than likely, it stems from what Dr. Mire describes as “an intolerance of uncertainty.” When we continually interpret something as a threat (i.e., the anticipation of the lights going out), we experience anxiety as a problem of over-reactivity. Alarm bells are continually going off and start to create life interference based on how we interpret things. This is how Noah’s anxiety manifested during the freeze.
So, WHAT can we do? If anxiety is our bodies’ natural response for safety during crisis, how do we combat it when things get out of control?
Dr. Mire states that the most effective non-medication treatment approach for anxiety in autism is Cognitive Behavioral Therapy (CBT). It sounds technical, but basically, it is learning your child’s “before” and “after” when it comes to anxiety.
First, start with the “before.” What tends to trigger your child’s anxious response? How does the anxiety manifest itself? Then, use this information to minimize the anxiety response and set your child up for self-regulation success. Next, increase predictability. Give transition warnings, offer explanations – give your child the chance to take control of the situation themselves. The goal is for your child to learn self-regulation without any prompting from you.
Using the example of Noah during the recent winter storm, his anxiety was triggered by the unexpected loss of power. He vacillated between anger and frustration and even tears. As the days went on, it was helpful to continually remind him that we could lose/regain power at any moment and to prepare for the uncertainty.
Next, Dr. Mire focuses on the “after” – How does your child calm down? She suggests using this information to identify ways of teaching self-calming strategies to your child. For example, Noah uses physical movement to blow off some steam, so we bundled up and took a snowy walk around the block. This seemed to help him better process what was happening and accept that things were not just happening to him, and the outcome was out of his control. Dr. Mire gave other examples of ways children can reset and begin to self-regulate - music, physical touch, talking, or even a preferred toy are just some examples.
Knowing your child’s “before” and “after” will help you approach the following strategies more effectively.
HOW can your child learn to understand his or her anxiety:
Dr. Mire believes that a combination of first explaining followed by modeling behavior is the best way to teach your child how to combat anxiety. It is very common for children to be able to pick up on their parents’ anxiety and responses. As parents, we can model how to cope with stressful situations or thoughts. Deep breathing is just one way to reduce the physical effects of anxiety. There are many multi-sensory calming options, but the most important thing is to find what is most calming for your child.
Noah is most often calmed by logic, routine, and familiarity. On the mornings we woke without power, we made a habit of going into Noah’s room and opening wide the window blinds to let as much natural light in as possible. Being in his room away from the darker spaces in our home surrounded by his drawings and books helped Noah reset and settle into our days.
HOW as a parent can you support your child during periods of anxiety?
Parental Support = Practice and Praise
Dr. Mire suggests practicing together before strategies are needed. Don’t wait until your child is anxious to work on these. Help them become accustomed to the prompts. Model use of the same strategies, and let them see you doing it. Practice strategies while doing things that make them anxious, gradually exposing them to the situation that causes anxiety. As with any learning, self-regulation is an ongoing process. Praise attempts to use strategies, even if it “doesn’t work” that time. Problem-solve for next time. And do not forget to give yourself a pat on the back, too. You are working hard, and this is not easy.
The winter storm gave our family multiple days of practice calming everyone’s anxieties about the weather and the cold and the electricity. Noah was pretty good at praising himself. On the third afternoon, as the lights flickered off, he came down from his room and said, “Mom, I think I’m really getting the hang of this.” And, as any good mom would, I replied, “You sure are Champ!”
When it comes to the why, what’s, and how’s of dealing with anxiety in children with autism, it is clear that there are proven strategies that improve outcomes when learned and put into practice consistently. However, if your child’s anxiety is escalating or interfering with daily life, Dr. Mire encourages families not to be afraid to seek outside help. Find a provider with experience with autism and evidence-based approaches that a family can integrate into anxiety treatment.
For more information on Dr. Mire’s Westview EDU presentation, Dealing with Anxiety: A Parent’s Primer to Understanding Anxiety in Autism and Helping Kids on the Spectrum, you can access Dr. Mire’s presentation slide deck here. Thank you to Dr. Mire for her generosity in sharing her knowledge and expertise with our community.
If you are looking for a cognitive behavioral therapy provider, please contact Penelope Khuri, Marketing Coordinator at The Westview School, for our recommended list for local providers.
Westview EDU is a monthly education series provided by The Westview School for parents and caregivers of children with autism spectrum disorder. Westview EDU sessions are open to the community and are held virtually via ZOOM. For more information on the upcoming sessions and how to RSVP, please visit our website.
1. What are the vaccines available? How do they work?
There are currently two vaccines available to people in the United States: the Pfizer vaccine and the Moderna vaccine. They are both nucleic acid vaccines, specifically mRNA (messenger RNA) vaccines, and they work similarly.
mRNA vaccines do not change your DNA, and they don't even have the tools needed to enter the cell's nucleus where the DNA is located.
These vaccines work by teaching the body to make antibodies that will bind to the proteins on the virus. By binding to the virus, the virus will not be able to infect new cells.
Because of the way the vaccines work, it is IMPOSSIBLE to catch COVID-19 from the vaccine.
2. Are the vaccines safe?
Yes, both the Pfizer and Moderna COVID-19 mRNA vaccines have received emergency approval from the US FDA (US Food and Drug Administration). This approval was given after undergoing clinical trials in which they must show that they are safe and effective. The data were examined as late-stage trials are on-going, at the end of the trials, and even after the vaccines are available to the public so that any concerns can be immediately addressed.
Emergency use approval is available during emergencies like pandemics. They are only given after enough safety and effectiveness data is available from clinical trials, there is sufficient manufacturing data evaluating the quality of the product, and other aspects of the vaccine development and testing are thoroughly reviewed.
If the trials show that a specific vaccine is not safe and/or effective, that vaccine's trial will be paused until the details can be investigated further, or it will be stopped altogether.
All vaccines and drugs must follow this process before becoming available to the public. There are no short-cuts in determining safety and effectiveness.
3. How did they get approved so quickly?
There was work already being done on mRNA vaccines, so some of those groups pivoted to work on the coronavirus vaccines.
Research groups were already working on ways to improve the speed of vaccine manufacturing.
Funds were immediately available to companies to begin clinical trials and run multiple trials at once. Usually, companies and scientists need to raise money, apply for grants, or both.
Study volunteers were more easily recruited than is typical for clinical trials. It was easier to test the vaccines' effectiveness as many people are exposed to coronavirus in the population.
The paperwork was reduced, but the scientific process wasn't cut short. The approval process was very thoroughly conducted and reviewed.
4. Will they help against the new strains?
As new variants arise, the vaccines can be adjusted to include the new variants, and/or boosters can be given to address the variants.
The vaccinations can help prevent or limit new mutations as the vaccinations reduce the chances for coronavirus to replicate and mutate if most people are vaccinated.
5. What are the common side effects of the COVID-19 vaccines?
The most common side effects are soreness at the injection site, headache, muscle ache, chills, fever, joint pain, and fatigue.
Taking acetaminophen or NSAIDs BEFORE the vaccines is NOT recommended because we don't know if pain relievers will reduce the vaccine's response. After the vaccine, it is okay to take them if your healthcare provider allows it.
The side effects usually last about 48 hours after receiving the vaccine.
The side effects seem to occur more often with the second dose, but they are still less severe than the symptoms of having COVID-19. You will still need to have two doses of the vaccine to get the full benefit (95% efficacy).
6. What are the long-term effects of the vaccines?
Since both COVID-19 and the vaccines are new, we don't know the long-term effects of the vaccines, but the trials are not showing signs that there are long-term side effects. Thankfully, the studies will continue to monitor study participants over time.
We do know that there are some significant longer-term effects of COVID-19 after initial recovery, so it is better not to get COVID-19 in the first place.
7. I have already had COVID-19. Do I still need the vaccine?
Yes, because we don't know how long natural immunity will remain after infection, some early studies have reported that immunity from infection may not last long.
Since there is a risk of being reinfected with COVID-19, the vaccine can help prevent future infections.
8. Can kids get the vaccines?
The Pfizer vaccine is approved for people 16 years old and older. The Moderna vaccine is approved for people 18 years old and older.
Both companies have started trials in children 12 years old and older, and trials for younger children will be conducted after the "teen" trials.
9. Can I ditch my mask after I get both doses of the vaccine?
Not yet- you'll still need to keep a mask on, wash hands, and social distance! The vaccines take some time to be effective after being given, and none of them have 100% efficacy- this means you could possibly still get sick.
Being fully vaccinated AND wearing a mask AND social distancing AND regular handwashing are all factors that work together to keep you and your loved ones healthy!
We are unclear whether being vaccinated will prevent you from spreading coronavirus to others, even if you don't have any symptoms.
When your priority group for vaccination comes up, please make a plan to get your COVID-19 vaccine. As always, please consult your healthcare professional for medical advice.
This pandemic has been a difficult time, and we are overjoyed by how well the Westview community stands together. Continue to take care of each other and yourselves, Wildcats!
Wishing you good health and happy days,
The Westview School COVID-19 Medical Advisory Board
The Westview School COVID-19 Medical Advisory Board is comprised of Westview parents and former parents with experience on the front line during this pandemic. These highly-trained professionals work in many different fields of medicine, such as epidemiology, pulmonology, and critical care. This group of medical professionals continues to be an invaluable resource to The Westview School leadership team.