Understanding Autism: An Outsider's Perspective

Understanding Autism: An Outsider's Perspective

Though widely misunderstood just a few decades ago, autism is now at the forefront of many discussions of neurodevelopmental disorders. People both within and outside of the medical community have realized the importance of helping people living with autism, and for good reason.

According to the CDC, 1 in 68 children in the United States is living with autism spectrum disorder. This refers to a wide range of conditions involving trouble with social skills, speech and nonverbal communication. GI disorders, sleep difficulties, and ADHD also frequently accompany autism spectrum disorder. Of course, each person with autism is different, and they have many, many strengths along with these perceived weaknesses brought on by the disorder.

Given what we know today, it’s hard to believe that for many years people believed that the behaviors associated with autism were somehow caused by the child’s parents, specifically the mother. In the 1940s, the symptoms of autism were at least correctly identified as their own disorder, rather than as precursors to conditions such as schizophrenia as previously thought. But, in 1949, Leo Kanner conducted an observational study of these children with these symptoms of the developmental disorder, and falsely made the claim that children with autism were more likely to be born into intellectual families, and have mothers whose parenting style was described as cold. This study, and the ensuing false statement made by Kanner led rise to the “refrigerator mother” theory that followed autism for over a decade.

In the 1960s, Bernard Rimland, a father of a son with autism, finally argued against this notion that autism was somehow related to a poor parent child bond. Along with other parents of children with autism, Rimland later went on to found the Autism Society, an organization with a great mission to help everyone affected by autism, including the families and loved ones of people with autism. Following Rimland’s assertion in 1964, the coming decades were a time of research on autism and how to support people living with the condition. In 1980, autism was finally added to the DSM (a guide of all recognized psychological conditions). Since then, new editions of the DSM have been updated to reflect new research and understanding surrounding autism.

Today, most people have an idea of what autism is if they were to be asked. But just because people understand what the condition is and can recognize the symptoms does not mean that we can understand what it feels like to live with autism.

Ten Things to Know

Author Ellen Notbohm wrote an eye-opening piece for Autism Speaks entitled “Ten Things Every Child with Autism Wishes You Knew.” The piece emphasizes the fact that things are extremely different in our eyes than they are to someone living with autism, especially a child. An amazing example Notbohm gave is the experience of going to the grocery store, which for someone without autism can be an utterly overwhelming experience. As Notbohm explained, “the sights, sounds, smells, tastes, and touches that you may not even notice can be downright painful for [someone with autism.]” Autism affects the senses, so someone in a grocery store may be hyper aware of the sounds of all of the various conversations, wheels turning on a cart, a coffee machine grinding, cash register buttons, and more. An experience that is easy and simple for someone else can be a big challenge for someone with autism. It’s important to understand why people with autism may act out in certain situations so that we can help them. The person experiencing these things may be too overwhelmed to explain themselves, or if they’re nonverbal they have no way to tell you what’s wrong. It’s crucial to be aware of the situations that may be stressful, overwhelming, and upsetting to someone with autism so that you can properly help them when these situations do arise.

Notbohm also describes the ways in which we may need to slightly alter our communication with people with autism so that they can easily process and understand our words. For example, idioms such as “hold your horses” can be confusing for a child with autism, so they may continue running around, appearing as if they’re disobeying the instruction. Rather, it’s important to be direct, and say things such as “please stop running.” Being direct and clear when speaking to someone with autism will help prevent communications breakdowns that people with autism are all too familiar with. Even if you’re speaking directly and clearly, Notbohm points out that people with autism may be nonverbal, or cannot verbalize what they’re feeling even if they do have verbal skills. She says to watch for all the ways in which the child is trying to communicate, including body language or appearing withdrawn. People with autism are also especially include to pictures and visuals, and visual communication may be the way to go. It can be hard for children with autism to instantly process verbal directions; visual directions are a tangible thing that they can examine for as long as they need to. If you’re interacting with a child and the verbal message doesn’t seem to be getting through, a visual representation of what you’re trying to say or teach them is much more likely to resonate with the child.

When interacting with a child with a child with autism, try to remember the above strategies for communicating. Don’t get frustrated if the child doesn’t seem to be listening to you or following instructions; what’s more likely is that they simply don’t understand what you were asking of them. By speaking clearly and directly, the child is able to focus on you and your words rather than all of the other sights, noises, or smells that may be pulling at their attention.

In Their Shoes

Still, knowing how a child with autism’s brain may perceive the world and how to best communicate with them is in no way equivalent to the experience of someone living with autism. One of the biggest barriers in life for people with autism is social interactions. It can be helpful for a family member of adult mentor to teach children with autism how to initiate play, or if you’re a teacher or in another school setting encourage other students to invite children with autism to join them when they play. Social interactions and friendship are extremely important parts of life to everyone, especially children. By opening the door for children with autism to feel more comfortable interacting with others, leading to relationships and friendships, you could make a huge impact on their emotional wellbeing.

It can be stressful at times to try to raise or teach children with autism. It is extremely important to remain patient, and remember that they are just children. No child is perfect, with or without autism. It also helps both parties to focus on all of the strengths of the child rather than just the weaknesses. This can help you identify the best ways to interact and communicate with the child, and which activities will bring them joy and contentment. Most importantly, by focusing on the strengths of the child, they will feel supported and accomplished rather than incapable or put down. And, remember that at the end of the day, children with autism are just like all other children. Nobody is perfect, but any child needs love and support. Those two things can make a monumental difference for all children, with or without autism, as they grow up and find their own way.