Archive for 2017

When Behavior is the Disability

 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.

 

 

 

 

 

 

   

 

Mindful Monday – First Taste of the Day

 

Here’s a mindfulness exercise from Donald Altman in One Minute Mindfulness:

 

 

 

Think about the first thing you tasted this morning, perhaps a sip of coffee or minty toothpaste or cereal with milk. What, if anything, do you remember about it? If your answer is “nothing”, you’re in good company. As rushed as we are in the morning, it’s easy to go from one autopilot moment to the next without paying attention. Set an intention for tomorrow morning to pay attention to that first taste. Sip and savor instead of slurp and swig! This small step will help you as you develop a mindset of paying attention to what’s happening in the moment.

The Autism Blogcast with Jim and Raphe – May Edition

News Flash: The  May edition of The Autism Blogcast, featuring autism experts Raphael Bernier, PhD and James Mancini, MS, CCC-SLP.

In an effort to keep you up to date on the latest news in research and community happenings, we welcome two of our favorite providers best known as Jim and Raphe, the autism news guys.

These two have too much energy to be contained in written format so our plan is to capture them in 2-5 minute videos that we’ll post the first week of each month. We welcome your questions and comments. Tell us what you think of our dynamic duo!

In this edition of the Blogcast, our reporters discuss school voucher programs and new research on advancements in technology and improved screening for autism.

The Autism Blog turns 6!

Another year has come and gone and we have much to celebrate. First, our thanks to you, our 1000+ subscribers who let us know you find the information in our posts meaningful to your lives. 

Next, thanks to our providers and to our guest authors who take time from their busy schedules to write or film content for a blog. A special thanks to Kylie for filming Raphe and Jim for our blogcast and to Emily for her Ask Dr. Emily blog column. We’re a small but dedicated team and we look forward to another productive and successful year ahead.

 For the second year in a row Healthline has named our blog as a top Autism Blog!!

 

 

 

 

 

 

 

Your Voice Matters: Life with Autism

For years I have worked tirelessly to give my voice to autism, both through training providers about family-centered care and training parents to become advocates for themselves and their children.  I have always tried to capture my son Josh’s story accurately, and have struggled with feeling authentic.  Do I share my story or his? 

 

When Josh became a teenager he no longer wanted me to share his story, so I worked at refining mine. When I was unable to do that, I stepped away from speaking publically about autism. 

Our journey has been quite an adventure!  Many ups and downs and everything in between.

In January Josh decided to make a video about his struggles with autism.  He presented his story to the entire student body at a Martin Luther King assembly at his high school, Nathan Hale.  His voice speaks volumes more than I ever could. 

Thank you, Josh.  I’m so proud of you!   Keep talking…your voice matters!