The Westview School Blog
When it comes to parenting a special needs child, there are many things to consider: therapies, schools, medications, the list goes on. However, arguably one of the most essential therapeutic strategies to help your child is evaluating and caring for yourself. To have the physical and emotional energy to fulfill all the duties of a parent (especially an autism parent), you must make sure you are mentally healthy. How many times have we been on an airplane and heard the flight attendant advise, "in case of an emergency, secure YOUR OWN oxygen before helping others next to you." In the case of raising a child with autism, it is essential to "secure your own oxygen" before you can be expected to help your child. Parents who are stressed, feeling anxious about the future, or having depressed feelings about their child's current stage of development, are more likely to have trouble helping and supporting their child in the ways they need. If you really want to help your child, challenge yourself to make these parent coping strategies a habit:
1. Prioritize your self-care.
There's an old adage that says, "empty cups can't pour." Think about the things that fill your cup, and make time to prioritize them. Taking care of yourself is a selfless act because it sets you up to be in the best position possible to continue to advocate and care for your child's needs.
2. Engage with other Autism parents in the community.
You are not alone. Other parents and caregivers of children on the autism spectrum are going through similar situations as you. Expand your social circle to include support from other parents who understand what you experience. Shared experiences help build connections and can decrease feelings of depression, anxiety, and isolation.
3. Minimize anxiety by staying present.
The past is already done, and the future is not promised. Remind yourself to focus on today. When you worry about the future, you miss an opportunity to be grateful for what you have in the now. Be intentional about identifying what you are thankful for right now to help minimize your anxieties about the future.
4. Focus on your child's strengths.
Try not to focus on the negative. It is much more beneficial to focus on your child's strengths. There is no advantage mentally or emotionally to only see your child for the things they can't do. Knowing where your child's strengths lie and keeping them at the forefront can help you use that knowledge to supplement the areas where they need more support.
5. Plan time for fun.
All work and no play does not equal success. Sometimes your child (and you) need a break from it all. Taking time out from the hard work to laugh and play can improve your overall quality of life.
Remember, you are the most important person to your child, and they need you to be physically, emotionally, and mentally strong. Your child needs you to be strong enough to continuously advocate for their acceptance, accommodations, and inclusion within their community. Being strong doesn't mean that you won't have bad days. Improving your well-being doesn't mean that there won't be challenging times, but hopefully, these strategies will help you build healthy self-care habits and, in turn, will help you work better with your child at home.
Jelisa Scott is a Board Certified Behavior Analyst (BCBA) and a Licensed Behavior Analyst (LBA) in the state of Texas. She received her bachelor's in Psychology from Louisiana State University in 2010, her master’s degree in Behavior Analysis from the University of Houston Clear Lake in 2014 and is currently in school to earn her doctorate degree in School Psychology from the University of Houston. Jelisa has been working with children with and without special needs since 2008 and has gained experience providing in-home ABA services, parent training, classroom consultations, navigating ARD meetings, decreasing severe problem behavior, improving verbal behavior, social skills training, and early childhood intervention.
This blog post was adapted from the presentation given during WestviewEDU on Thursday, October 7, 2021. WestviewEDU is an education series presented by The Westview School for parents and caregivers of children with autism spectrum disorder. For a full list of WestviewEDU sessions for 2021/2022 academic calendar year, visit The Westview School online.
The transition between childhood and adolescence can be a confusing and difficult time for children. Things are beginning to change on a mental, physical, emotional, and social level. Autism adds another complicated layer of development to these already challenging times for children. As a parent, you may wonder how you can best support and help your teen navigate these years. It comes with a myriad of questions: Are these behaviors normal? Should it be happening this early? How long will this last? Is this autism or hormones? Should I be concerned about a particular behavior? What can I do about it?
There are a few things to take into consideration. First, parents should determine whether new behaviors are actually due to autism or simply part of typical adolescent behavior. Also, parents need to consider if these changes reflect their teen’s individual personality and preferences. To make things more complicated, it could be a combination of all the above.
Typical Adolescent Behavior
To better distinguish between which behaviors are due to typical adolescent behavior versus autism adolescent behavior, let’s look at what typical adolescent behavior looks like:
- Physical changes include changes in hormones that can lead to new body hair or smells and increases in height and weight.
- Mental changes include developing more abstract thinking skills, using more logic and reason to make decisions, forming their own beliefs, questioning authority, and a heightened focus on physical concerns.
- Emotional changes include shifting moods quickly, feeling more intensely, and increasing risk-taking and impulsive behavior.
- Social changes include experimentation with different levels of social and cultural identity, increase in peer influence, awareness of sexual identity, and learning how to manage relationships.
Most children pass through this period of adolescence with relatively little difficulty despite all these changes. On an even more positive note, youth tend to be quite resilient when problems arise; this includes those with autism. Teens on the autism spectrum often thrive, mature, and increase their competence during this period of growth.
Tips For Parenting Your Teen on the Spectrum
Front Load Information: Our teens on the spectrum learn best when we can front-load them with logical and factual information. We need to be able to prepare them and teach them these life skills ahead of time. The truth is you will not be able to prepare them for everything but showing them the how, why, and what to do can support them through this transition. A simple one to tackle first is why we need to use deodorant or feminine products.
Share Experiences: Teens appreciate first-hand experience, so if you had difficulty navigating through a situation like theirs, then share your experience with them.
Answer Questions: Perseveration on any subject matter is common for children on the autism spectrum. When experiences are novel and uncertain, perseveration can sometimes increase and often cause heightened anxiety. This is not healthy or comfortable for any teen! Answering their questions, no matter how many questions there may be, will be helpful to your child. Also, offering solutions and assisting them in a calm, helpful, and consistent manner will convey that you care and validate their feelings.
Seek Outside Help for Your Child and Yourself: As parents, there is a tendency to tackle it all for your kids. However, during these adolescent years, it may be helpful and even more impactful for your teen to talk about these changes with someone other than you. This could be with a trusted family friend, relative, peer, or professional that the teen feels comfortable answering their questions.
You must also remember that you can build and rely on your support system to help you gain clarity from the fog of dealing with your teen daily. Parenting is hard, and these years with your child can be exhausting! Your community can offer support by letting you vent and sharing personal experiences. You are not alone.
Supporting and learning from each other is key to you and your kid's successful management of the teen years. This is true no matter how old they are. Parenting can be tricky. And life, in general, is not without its share of challenges. When parents and children work together to face changes head-on, we know that these struggles can produce perseverance, and perseverance helps build resilience for both you and your child.
As your child gets older and the teen years approach, it can seem daunting for parents, but as indicated above, there are ways to successfully support and help your teen through this time. If you want to learn more about individual or family therapy, please reach out to The Stewart Center at The Westview School. We are available to support you and your child.
Mimi Le, M.A., LMFT, LPC is a Licensed Marriage and Family Therapist and a Licensed Professional Counselor. She provides therapy and consultations for adults, parents, siblings, children, families, and groups. She received her Bachelor of Arts Degree in Art History from Baylor University and earned her Master of Arts Degree in Family Therapy from the University of Houston – Clear Lake. She specializes in autism spectrum disorder, trauma- and stressor-related disorders, anxiety disorders, depressive disorders, interpersonal relationships, and multi-generational and cultural matters. She also provides parent-coaching among her other duties as a Student and Staff Support Specialist at The Westview School.
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.
Have you heard the saying, “If you’ve met one child with autism, you’ve met one child with autism?” It is called a spectrum for a reason, and under the umbrella of autism spectrum disorder, you will find a vast differentiation of children and behaviors.
My son, Noah, is 12. As a parent, I am way past the point of explaining or apologizing for his differences in behaviors and communication. He is an awesome kid. As his mom, I know exactly how much time and effort and money our family has invested into growing Noah into the best version of himself. From therapy to special schooling, medications and doctor’s visits, we have ten-plus years invested. For all his weaknesses, his strengths are many, and I can honestly say that I know how hard we have worked to hone those strengths. It is still a work in progress and probably will forever be.
This started as an article about 10 things I want you to know about my child with ASD. But, really there’s only one thing I want you to know: WE NEED GRACE.
Grace has many definitions, but let’s go with this one: “The disposition to or an act or instance of kindness, courtesy or clemency.” There’s a lot of talk about Autism Awareness. We even have a month for it in April as a reminder. But, what do you do in the face of someone who is different, and how will you teach your children to react to those differences?
There was time somewhere between his diagnosis at 24 months and now that I was more sensitive and less accepting of what I perceived as a deficit in my child. Was I doing enough? Was I doing the right things? Is everyone looking at us?
One moment always comes to mind. Noah was about 6 years old. He has always been high energy with difficulties in body regulation. Translation: he’s super hyper out in public. It’s funny because he’s pretty logical, and he has a good moral compass of right and wrong. He knows how he should act in particular situations but somewhere between thinking and doing, things tend to go awry. We happened to be heading into his favorite store - Target. Before getting out of the car, I gave him a little pep talk. I call it front-loading, where I prepare him for what is about to happen next.
Me: “OK, buddy. Here’s the thing. We are about to go into Target, and I want you to have a super quiet body.”
Noah, with complete confidence in himself: “Got it, Mom.”
But, as much as I tried to front-load, and as much as Noah thought he had this, walking into Target, the excitement of a favorite place couldn’t keep his little body calm. He was immediately jumpy and chatty earning stares from the other shoppers. So, there I stood on the toy aisle, giving up the fight of keeping him quiet. I was letting him live his best Target life by bouncing up and down the aisles.
Another mom walked up to me. She said, gesturing toward Noah “is he… (awkward pause and whisper) autistic?”
She continued. “Have you tried therapy? Or diet? I have this friend…”
You could ask any autistic mom to fill in the blanks here. We’ve all been in this sort of a situation. And, man… it totally stings.
“Did you vaccinate?”
“Have you tried ABA?”
“Is he gluten free/casein free?”
“Have you seen Parenthood?”
She must have caught me at a weak moment because all I could think as I started to tear up was Noah was eight, and we had been in therapy and special schooling for six years. And, I was working so hard for him. He was working so hard. And, it just took one misplaced comment from a well-meaning fellow mom to bring up all the insecurities that in my heart said, “Are we doing enough? And is it all my fault?”
I always wonder how that particular situation could have gone differently, and why it has always stuck with me. Maybe just a “Good job, Mama!” would have sufficed. Maybe Noah isn’t something that needs fixing. As a parent, we are always trying to challenge and improve our children, neurotypical or not. That’s why it’s called “raising” kids. We are all just working on different things. And, I am so proud of my child, and he’s got so much to offer to our family and this world. He’s smart and kind. He loves his sister and pizza. He’s the fastest drawer I know, and his favorite color is red because it comes first… duh. He can pick out all the countries of the world based on size and shape, and he is an avid collector of graphic novels. And, one of the things, I am trying to teach him is showing love and acceptance to the people around him. Need something to work on with your kiddo too? It’s a good one. Take time to say, “Thank you.” Take an interest in the people around you even the ones who are different. Practice simple acts of kindness. Raising tiny humans is hard - autism or not.
And, I think the best we can do is show a little love and give a little grace and teach our children to do the same.