HAVING THE TIME OF MY LIFE: FIVE REASONS I LOVE WORKING WITH KIDS ON THE AUTISM SPECTRUM

By Barb Stanton, PhD, LPCC, LMFT

I’ve worked with children with an Autism Spectrum Disorder (ASD) for over 16 years. Recently my office moved so I am in the heart of our day treatment program for kids with an ASD. People ask if it is distracting or frustrating working with kids with an ASD. My unequivocal answer is “No.”

Top five reasons I love working with kids with an ASD.

1. Every day is different. This is self explanatory. Please, keep reading.

2. I am always challenged. Autism is a neurological condition. It is about differences in the brain. But most people identify autism from behaviors when there is so much more to it. Autism is about different perspectives, diverse communication and understanding people and the world in a unique way.

The research comes out fast. There are approximately 3,000 new articles published every month. The world of autism is always changing. It is exciting and challenging to keep up with everything.

Daily I get calls or emails with questions. I often hear words such as “defiant,” “manipulative,” “lazy,” “doesn’t care,” “angry,” “noncompliant,” “uncooperative” among others used to describe the actions of children with an ASD. It is clear that the focus is on the behavior rather than the why.

The function of the behavior is to communicate. It is important to figure out what the meaning is.

3. I love playing detective. I get to figure out the why. There is much to consider.

The function of the behavior may not always be obvious. It may be something that happened immediately before the reaction or it may be something that happened weeks before or it may be something anticipated that may or may not actually happen. Children in a meltdown often don’t know what else to do so they resort to maladaptive physical and verbal behaviors.

Recent research shows that children with an ASD often have co-existing medical and mental health conditions. If they’re not sleeping well they don’t feel good (85% have sleep problems). It is estimated that nearly 70% of children with an ASD have a co-morbid psychiatric diagnosis such as anxiety, trauma, ADHD, depression, etc. It is hard to regulate emotions and behavior when the sugar or thyroid levels are off, if they have headaches, seizures, acid reflux, other gastro-intestinal issues or if they have overwhelming worries, loneliness and their world always seems chaotic and confusing.

At the core of an ASD are executive functioning issues such as organization, mental flexibility and motivation. They may process information slowly or get easily stuck on an idea. Then there’s central coherence, theory of mind, communication differences, etc. that can create misunderstandings. Those are just some of the clues I must consider in finding a solution to the question, “why did that happen and what are they trying to communicate?”

4. There is mutual acceptance.

Let’s face it, I’m a little (OK, may more than a little) quirky. It’s great to talk to people who also like zombies, horror movie trivia, science and Dr. Seuss. My world perspective is not always mainstream. People with an ASD are the most understanding and compassionate people that I’ve ever known. They are the first to offer help and want to make things better for others.

Often what adults want to change in children with an ASD are the things that are problems for them. Does it really matter that someone hums, paces or flaps their hands? Why not have long conversations about markers, bowling pins or medieval weapons? Maybe having a lot of friends or going to the park isn’t something desirable. Maybe science fiction is preferred to sports. You can have a great conversation with someone who doesn’t look at you, sits behind a chair or is playing a video game. As Dr. Seuss said, “Why fit in when you were born to stand out..”

5. I learn the most amazing things. I’ve learned to not fear meltdowns. I look at them as providing valuable information. I’ve learned that the term “destroyed the room” means something different based on your perspective. I am learning not to overreact or underreact. I have learned that when I see a meltdown I have to stay calm and help them shift to a preferred activity. (And NO, I’m not rewarding bad behavior. I am calming their brain. This was a hard lesson to learn.) I’ve learned to not have negative consequences for the autism and to embrace the teachable opportunities.

I learned that communication is a key. I try to speak clearly and concretely. I provide explanations even if I think I don’t need to. This can be tricky because I’m not always sure of the explanation to a question like why adults can get away with behaving badly when kids get punished for it or why you can’t wear a hat in school.

I’ve learned that I can be wrong and make mistakes … frequently. And it’s OK to admit that.

I’ve learned to be interested in different thoughts and viewpoints. I now know about toilets, dinosaurs, Minecraft, Undertale, Legos, perler beads, the differences between Xbox 1 and Xbox 360, how to bypass computer systems and so on.

And this is something I am still learning. Say it once and give kids time. They heard you. Talk less … a lot less.

I learn something new every day from these amazing kids. They are the experts in autism. They have taught me curiosity, patience, different perspectives, and that every day is an adventure. I am better because of them.

I have also learned that I have a lot more to learn. I am grateful for that opportunity.

For more information: www.prairie-stjohns.com www.rrvan.net www.cmcgc.com/media/handouts/101103/230_Peter_Vermeulen.pdf www.livesinthebalance.com www.socialthinking.com www.researchautism.org/resources/newsletters/ archives/documents/TheCycleofTantrumsRageandMeltdowns_002.pdf