Understanding Autism

Human beings are very simple...and incredibly complicated. That’s the problem. We are walking contradictions. We seek pleasure and avoid pain, but we often endure pain today for pleasure tomorrow. We are at our best when we can be true to ourselves, but serving others brings out the best in us. We have free will, but free will is guided by written laws, unwritten social norms, implicit social contracts, personal values, religious doctrines, enlightened reasoning, traditions, education, philosophy, and superstitions. We have more information at our fingertips today than at any other point in history, but we are suckers for misinformation because we avoid truths that challenge our beliefs or makes us feel uncomfortable. Human beings are simple and complicated, and April is Autism Awareness Month.

Autism Awareness continues to be important because individuals with autism spectrum disorder (ASD) are still misunderstood. I opened this blog with human contradictions because they largely explain the misunderstandings about autistic individuals and the challenges faced by those who struggle to understand the social feedback, nuance, and expectations that most of us take for granted.?

Misunderstandings occur when we try to view something complicated through a simple lens. We love to apply what we already know to novel situations, but that rarely works with ASD. That approach has led to inaccurate beliefs that autism can be cured, misinterpreted autistic behaviors, and ill-conceived therapies with unrealistic goals. If we really want to understand people with autism, we need to start with an open mind and resist the urge to simplify the challenges and the solutions. It takes humility to accept the fact that we don’t have the answers, especially for educators, therapists, and parents who often believe they are expected to know.?

The most effective people working with autistic individuals start with an open mind so they can learn about each unique individual. As Dr. Stephen Shore so accurately stated in 2018, “If you’ve met one person with autism, you’ve met one person with autism.” When you understand the underlying driver of odd or stereotypical autism behavior, you open the door to building a trusting relationship that can unlock untold joy, satisfaction, and possibilities.?

The one person with autism I know best is my 16-year-old son, Darrin Khan. He’s taught me more about autism, parenting, and open-mindedness than I could have ever imagined. I’ve learned a great deal from research, observation, trial and error, other parents, and books, but I don’t know nearly enough.?

There is very little you can say that is true of all autistic individuals, but I want to share three things that can be helpful in your search to understand.?

1. Chesterton’s Fence. The concept of Chesterton’s Fence is essentially the idea that you should not remove something until you understand why it is there. It stems from a 1929 essay by G. K. Chesterton in which he wrote:?

[there exists in such a case a certain institution or law; let us say, for the sake of simplicity, a fence or gate erected across a road. The more modern type of reformer goes gaily up to it and says, “I don’t see the use of this; let us clear it away.” To which the more intelligent type of reformer will do well to answer: “If you don’t see the use of it, I certainly won’t let you clear it away. Go away and think. Then, when you can come back and tell me that you do see the use of it, I may allow you to destroy it.”]

This is a crucial concept for whose interacting with autistic individuals because it is extremely rare that an odd behavior does not serve a function for that individual. There was a time when conventional wisdom held that any behaviors that deviated from behaviors seen in neurotypical individuals were discouraged. This is a common approach in teaching all children how to act properly in society, so the goal of teaching socially acceptable behaviors is understandable. The problem was that these maladaptive behaviors often served a purpose that was not understood.

It was only in the previous decade that research found evidence to suggest the wide-spread prevalence of anxiety co-occurring with autism and that most typical autism behaviors were used as coping techniques. If a caregiver, for example, discouraged hand flapping in an autistic person who was using hand flapping to cope with an underlying pain or sensory overload, it would not only increase anxiety and stress, but it would compromise the trust between the two and future interactions would be even more challenging.?

Assume that odd behavior serves a purpose and find out what that purpose is.?

2. Holcomb’s Bobsled Lesson. Steve Holcomb was the greatest bobsled pilot in US history and passed away unexpectedly in 2017. His legacy lives on and as I thought of this topic, I remembered a story about him that is apropos. For those unfamiliar with the sport, it is common for pilots to walk the bobsled track and discuss strategies for driving each section to maximize speed. While discussing one particular curve on a track walk, Steve was asked about the best path or line to drive when entering the curve. To the surprise of everyone there, he said he didn’t know. Then he continued, “I can’t tell you the best way to enter that curve until I know how you exited the last one.”?

What you see at any given moment is just a snapshot in time, but you can’t really understand the full picture until you know what came before that moment. Shortly after we moved to Colorado, Darrin Khan was having a tough day. At that time, he coped with stress and anxiety by running all over the place. He ran outside and jumped the fence into the neighbor’s yard. I called his name and he stopped. He was smiling, but I knew he was on the edge, so I was talking to him as calmly as I could. The new neighbor was outside but hadn’t yet met Darrin Khan. He tried to be helpful, so he picked him up to hand him to me, but Darrin Khan completely lost it. When he’s in that state, he is extremely sensitive to touch, so that put him over the edge. The neighbor felt terrible, and I later explained the situation to him.?

The point is not that the neighbor did anything wrong, but that understanding the moment in this population often requires an understanding of what came before. This story is consistent with research that suggests that people with autism often experience higher spikes of cortisol when under stress and cortisol levels have been found to take longer to dissipate.?

3. Don’t Miss the Best Part. My favorite research questions to ask parents of autistic children are those that ask about the best parts of their child’s personality. I loved this because I get to see the parents just light up. I’ve heard stories about these kids being funny and kind and empathetic and loving. I heard stories that might be told about any child, but there was one common difference. Almost every parent commented that most people never see the best parts.?

The challenges of autism are very real, but they are only part of the package. There is so much more to these individuals and it’s a huge mistake to see autism as their identity. Darrin Khan is different than his siblings in many ways, but he’s genuinely as much a part of our family as anyone. A few years ago, I heard him saying what I thought was the f-word. I went to him and asked him what he was saying. He smiled and said, “fox.” I was happy with the misunderstanding and walked away. Then I heard him say, “fox you!” I quickly returned and found a smiling boy who was very proud of himself for finding a language loophole. It made me laugh and I was quietly proud of his creativity and his understanding of nuance. It was also the kind of thing that most people will never experience. There are more things that make him like other kids than things that make him different, and I know from experience that his how he wants to be treated.?

The challenge I have for everyone who reads this is to learn one new thing about a person with autism. Don’t be afraid to ask a parent why a child acts a certain way. Parents are usually happy to discuss their child and often relieved that someone takes an honest interest in them. But don’t limit yourself to learning about the challenges. You might be surprised with the answers you get when you ask about the things that most people never see. It just might bring us one step closer to harnessing the genius in these neurodivergent individuals.

Until that day, we can all do our part to let them know there is a place for them in this world, they do belong, and they are enough.?