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Katrina Davis is a family advocate at Seattle Children’s Autism Center and mother to Arthur, her 20-year-old beautifully complex young man with autism who gave his permission to share his story. Read full post »
My son Arthur was diagnosed with autism at age two. He is now nineteen. When he was much younger he would often vocalize loudly, perform jazz fingers in front of his eyes, or vigorously sniff everything within a two-foot radius of his nose. On those occasions when Arthur did odd things, I found myself looking at the faces of those around us. I would see their eyes move quickly to me with looks of confusion, anger, even disgust. Fortunately, there was usually a compassionate person who gave me a look of soft kindness and a small nod as if to say, “You got this.” I love those people.
Welcome to the July edition of Ask Dr. Emily!
We often receive questions that we want to share with all our readers. To help with this, Dr. Emily Neuhaus, a clinical psychologist at Seattle Children’s Autism Center, will share insights in a question and answer format.
It’s OK to be mad, but it’s not OK to hit. This is often the first instruction we tell toddlers as they seek to understand the world of confusing instructions, disappointment, and being told no. My son Arthur hits, kicks, scratches, and pinches people when he’s upset. These are startling words to read and difficult for me to write. Arthur is not a toddler. Arthur is a 17-years-young man. He was diagnosed with autism at the age of two.We’ve had many highs and lows over the years. The highs are amazing – his first 3-word sentence at age 6, fully toilet trained at age 9, noticing him read for pleasure at age 13, and his sheer joy when exploring Google Maps. He loves his family, our friends, his teachers, and his therapists. Arthur brings out the best in everyone. He redefines what it means to be normal. He strives to make sense of his life, just like the rest of us. He is a great guy.
Let’s talk about the lows. Aggression, property destruction, and blow-out tantrums are about as low as it gets for us. Everyday experiences can be powerfully overwhelming, frustrating, and confusing for Arthur. Loud sounds, nonsensical rules, and confounding instructions make him feel overloaded. And when that happens he can sometimes lash out with a quick pinch, hit, or kick. I know the triggers and know the signs leading up to it, but I’m his mother, and I know him so well. I can anticipate his actions…most of the time. Unfortunately, not everyone interacting with my son can spot the build-up to his aggression. When Arthur becomes aggressive or destructive, time slows down and my vision tunnels. I scan for items that can be thrown, windows that can be broken, or the direction of the busy street he might bolt toward. I become stronger – ready to deflect, duck, and protect. Sometimes Arthur is so upset that he harms himself so I physically have to protect both of us.
Everyone feels bad when Arthur strikes but no one as bad as him. After an incident, Arthur has a look of fear and regret as if he honestly cannot control it. He will cry and say repeatedly, “I don’t want to be angry.” “I don’t want to hit.”
If a stranger hit me I’d be scared and furious. But in those moments when Arthur has completely lost his ability to control himself, I feel compassion and deep sadness. It’s difficult beyond words to watch your child become so upset that he harms others, destroys property, and injures himself.
The aftermath leaves Arthur and me completely drained. Arthur likes to decompress in his room. That’s when the fear sets in for me. Will this continue into adulthood? What if he hurts someone? What happens if the police are called? Will they know he’s disabled rather than a threat? Will he be hurt? Will this limit his opportunities, freedom, and dignity in life?
Impulsivity, emotional control, and inflexibility are hallmark characteristics of autism. They are the main reasons for my son’s challenging behaviors. Fortunately, years of therapy to address challenging behaviors have paid off. We have a much better understanding that behaviors happen for a reason. They are learned, and they can be addressed. We better understand the triggers that set him off, effective strategies to keep him calm, and what works when he experiences a serious meltdown. Behavior is communication. As we’ve come to understand what he is trying to tell us, we are now able to get out of the house more. Like many parents with children who experience aggression, the fear of a meltdown can drive us into isolation, making us reluctant to leave the house, send our child to school, participate in community events, or even go to the grocery store.
Aggression, self-harm, property destruction, and other challenging behaviors are some of the most difficult aspects of autism. Fortunately there are Applied Behavior Analysis (ABA) strategies that are effective at addressing challenging behaviors. In the next blog, Karen Bearss PhD, a clinical psychologist at Seattle Children’s Autism Center will focus on parent training to address problem behaviors for individuals with Autism Spectrum Disorder. She explores many of the same strategies that helped us understand and address Arthur’s problem behaviors and best of all, Arthur is happier and possesses a sense of sovereignty.
Finding comfort and camaraderie with other parents has helped and this wallet card has also come in handy for me over the years.
Every turn from the moment he received the diagnosis was an epic battle. Fighting for ABA coverage, jockeying for a “good” school placement, baffling over why state and federal disability services were frozen, and poring over information about this complex disorder. What did it mean for Arthur and our family? Not to mention grappling with my own grief and white-hot fear about my young child’s future. Doctors reminded me, prognosis was impossible. At 18, will he be able to tie his shoes or drive a car?
Surrender? Are you kidding me? I was shaking my fists, stomping my feet, rattling cages, pressing 0, and taking names. I was a fierce warrior for Arthur.
The complex details, denials, misdirection, confusion, and inability to know if what we were doing was making any difference left me overwhelmed, defeated, and depressed. All this energy, pain, and struggle to meet his needs and our little guy seemed to go more inward with each passing day.
Before I had Arthur, my friend Diane and I would call each other daily to talk about our daughters, both infants at the time. I’d still be in my bathrobe at 2:00 p.m. reeling from a morning of fussy baby, poopy diapers, sleep deprivation, and wondering how yogurt got on the ceiling. We’d share honest moments about how incredibly hard this new mom thing was and how our 40 hour a week jobs were so much easier. Our conversations predictably evolved to how beautiful and amazing this new little person was and how we both just need to surrender to the Cheerios gathering next to the dust bunnies in the corner. We’d end our regular phone conversations with a simple “surrender” reminding us both to turn towards and embrace our new lives.
So a few years later when I was told our new baby boy had autism, I wondered how I would apply my once-effective surrendering strategy when fighting seemed like the only option to get anything done for him. It was impossible to feel calm or surrender to anything. I was in a constant state of urgency.
Intellectually, I knew it made sense to find peace in the face of so many unknowns. Why break myself against what I clearly could not control or change. I knew I’d be happier if I just let go of my tight grip on impossible circumstances.
My anger would not make my insurance plan cover ABA. My despair would not help Arthur begin using language and my fear for his future was getting in the way of me enjoying him in the moment.
Unfortunately, I could not close my eyes and will surrender to just happen. So I began my quest to accept what I could not change. I read books with titles like, Go to the Places that Scare You and Comfortable with Uncertainty. I soaked up what I could learn from other parents and adults I met with autism. I was beginning to see that the peace that comes with surrendering surfaces with time and deliberate attention-as the end-result of a long and reflective process – along with some hard work. I also learned I might not achieve permanent surrender but I could strive for moments of it.
Surrender does not mean less work or halting efforts to help my child reach his potential. I will continue to seek effective therapies, interventions, appropriate education, community participation, and I will continue planning for his future. I just might be a little more “chill” about it.
I pause, appreciate, and celebrate my son’s unique personality and the many gifts he offers the world. There is always a rich reward when I pause. For example, tonight, as I write this, Arthur is in his room singing along with Karen Carpenter. What 17-year-old boy in America listens to The Carpenters? Mine does and he’s belting out Close to You at this very moment. It’s delightful. He’s delightful. Moments like this give me the rocket fuel I need to propel my way through the inevitable work it takes to meet his complex needs.
Surrender also meant I stopped riding his challenges and bad days so closely. I can feel sad for him and pain when he suffers but ultimately, it’s his life. It took me years to develop what I have come to call a loving healthy disconnect. It’s much easier with typically developing children but I would argue just as important for our children with developmental disabilities. I need to be a steady bow. I will need to let him go. That arrow needs to fly! Easier said than done. I’m still working on that one.
Lastly, there’s an object in my kitchen windowsill. I see it every time I do the dishes, reminding me what surrender means to me. That object is a little Fisher Price dog that I found in my son’s shoe when he came home from school when he was 5 years old. That beat-up wooden figure had been in his shoe all day. Arthur did not have words at that age. No one knew. No one could help. It must have been so uncomfortable. His toes were bruised. He suffered and I could not help him. I cried because it represented so much about the entire journey with autism up to that point. Later that night as he took his bath, I looked at my beautiful and unique little boy enjoying his bubbles. He was ok. More than ok! He seemed perfect at that moment and I felt pure joy. So, the dog went in the windowsill to remind me to look beyond the struggle – even his struggles – to let go of what I can’t control.
I will not always know how to help him. He might not continue to improve, he will face hardship, others will care for him, and I’m pretty sure he will not be a Major League Baseball player or a Supreme Court Justice. I’ll do my best and that won’t be good enough sometimes. And that’s ok. I surrender. Wholeheartedly.
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