By Raun K. Kaufman
So many of our loved ones on the autism spectrum are struggling with anxiety… but not for the reasons we think.
Autism Misunderstood - Autism is often presented to the world as fundamentally behavioral in nature. People with autism (supposedly) behave in a certain way. They perform repetitive behaviors (often referred to, in words born out of a spectacular misreading of the source and purpose of these behaviors, as “stims”). They avoid eye contact. They scream. They hit. They are rigid and can be “defiant” (a term also based on a fundamental misreading).
We’re told that people on the autism spectrum do this or don’t do that. But people on the spectrum don’t do anything – just like people not on the autism spectrum don’t do anything. Someone might say, “People on the spectrum flip out when things don’t go exactly as they expect.” Or they might say. “People on the spectrum don’t listen when you ask them to do something.”
Following this logic, we could say, “Neurotypical people flip out when you cut them off on the road.” Or we could say, “Neurotypical people don’t show up on time.” Some people get angry and yell when they get cut off driving. Some people don’t show up on time. And, most crucially, all people do both of these things under the right conditions. For example, if a person has spent the day being screamed at by their boss, and then, on the way home, another driver cuts them off, that person might honk and curse and yell…even though, on other days, they would not react this way. So, people on the spectrum do certain things under some conditions…and they do different things under other conditions – just like neurotypical people.
Autism isn’t about what our loved ones do or don’t do. It’s about how they are and how they perceive things.
Autism Understood Why is this so important to understand? Because, once we get this, the door swings wide open for us to see something deeper about our loved ones on the spectrum: They are having a radically different experience of the world from us. And that really, really matters in ways we might not always see.
To truly understand people on the autism spectrum is to comprehend that they…
Relate to people differently. And, in the face of this social-relational-emotional-communication difference, neurotypical people, operating with the best intentions, usually don’t meet their loved ones where they are in a way that feels safe and welcoming to them.
Frequently have S4 – super sensitive sensory systems. This would be okay if their S4 was understood and accommodated. But instead, our loved ones are placed in environments where they are bombarded (unintentionally) with overwhelming sensory input throughout the day, which eventually leads to sensory overload.
Have a powerfully heightened need for predictability and control – a need which is almost continuously disrupted and violated (also unintentionally) at every turn.
The Trauma Chamber Imagine, for a moment, how you might feel if someone locked you in a room, deprived you of safe, comfortable social interaction, blasted you with non-stop, sensory-overloading stimuli, and robbed you of control over your environment. (This is actually an approach that is taken in torture and interrogation regimes.) How do you think you would react when placed in such a “trauma chamber”? How do you think you would feel? Do you believe your mental health would suffer?
If you are on the autism spectrum, chances are, you don’t have to imagine this scenario. You’re living it. The whole world is a trauma chamber.
Environ-Mental I know that sounds pretty grim. But there is a flip side. There is cause for optimism. There is, in fact, a way out of the trauma chamber.
In order to turn this around, it is critical that we first understand, on a deep level, that autism does not cause depression or anxiety. Autism doesn’t cause unhappiness or mental health crises. Most often, the environment does. To be more precise: It is the clash between our loved ones’ needs, experience, and ways of processing… and the environment and circumstances to which they are exposed that plays a starring role in a great many of their mental health challenges.
Our loved ones are responding in a very human way and a very normal manner to an environment that can feel like a trauma chamber.
When my colleague, Kate C. Wilde, and I developed the ACT (Autism Crisis Turnaround) protocol, we did so because, after a combined 50 years in the field, we saw that, although many people (family, professionals, educators) were working with great devotion to helping their loved ones on the spectrum, it was very rare that people were helping them in a way that felt like help to them. This certainly wasn’t intentional. Rather, it was because people couldn’t see the trauma chamber, they weren’t aware of exactly how their loved ones were experiencing the world, and they didn’t realize all of the ways in which the environment and circumstances were overwhelming their loved ones' brains and causing their coping mechanism to shut down (an event we call a Neuro-Crash).
The Way Out When a human being is exposed to an environment that makes it impossible for them to function, a mental health challenge is a likely outcome. The good news is that we don’t have to expose our children and adults on the autism spectrum to such an environment on an ongoing, non-stop basis. We can change the environment and circumstances…and thus reduce or eliminate the most virulent assaults on the mental health of our loved ones on the spectrum.
How? By addressing the three main areas of challenge discussed earlier: environmental, circumstantial, and relational.
Environmental: Go over your child/adult’s environment with a fine-tooth comb and find any sensory stimuli that you can reduce or eliminate. Are there noises (alarm clocks, blenders, buzzing fluorescent lights, construction, clanging and scraping of silverware on plates, shouting, babies/toddlers crying, etc.)? Are there scents (deodorant, hairspray, perfumes, air fresheners, cleaning products, etc.)? Are there tactile irritants (tags on clothing, scratchy clothes, buckles, dryer sheets, rashes, bug bites, etc.)? Have any recent foods been added to their diet (especially those that are processed or contain sugar, wheat, or dairy)? Can you dial down the screen exposure (tablets, televisions, computers, etc.)? I understand that you can’t eliminate all of these things, but the more you can reduce, the better it is for your loved one’s mental health.
Circumstantial: Control battles are deeply problematic for your loved one. Go through each room in the house like a detective and think about what aspects of each room are most likely to lead to a control battle (i.e., they grab dangerous items, rip the pages out of your books, chew on wires, throw fragile objects, draw on the walls, empty shampoo bottles, flood the bathroom, etc.). These are circumstances where you’ll want to do what you can to eliminate the battlefield by removing items or installing locks (on the fridge, drawers, or doors, for instance). If you can give them control without causing danger or property destruction, that can make a big difference. Must they sit at the table at dinner, wear the shirt you want, etc.? Also, reducing the frequency of outings to places like supermarkets, restaurants, and malls – places that are both extra stimulating and where they have to “behave,” will be enormously helpful.
Relational: It is absolutely crucial that you do your level best to remain calm, relaxed, and not emotionally agitated when you are around your loved one on the spectrum. Your emotional agitation is going to have a tremendous effect on the emotional state of your child/adult. Moreover, focus on expressing love and nurturing in a language they can most easily digest by using what we call the Autism Love Languages. (One of these would be showing interest in their interest. Could you be fascinated with their favorite book, game, subject, or activity, even if it is unusual and/or repetitive? Would you be willing to answer their question – even if it’s the 12th time they’ve asked in the past hour?) And, of course, it’s vital to avoid situations and environments where your loved one is likely to be in the presence of hostile, angry, agitated, critical, or disapproving people.
If you love someone on the autism spectrum, this knowledge will give you the opportunity to support their mental health in a new way. What it takes is a willingness to prioritize their emotional well-being over the inertial urge to keep things as they are, do what’s most convenient, and keep all of the current systems in place. With your dedication and your love, your child/adult can rise above.
Raun K. Kaufman is the author of the book Autism Breakthrough: The Groundbreaking Method That Has Helped Families All Over the World and the former CEO of the Autism Treatment Center of America®. An international lecturer and graduate of the Ivy League’s Brown University with a degree in Biomedical Ethics, Raun has completed lecture tours throughout Asia, Europe, and the U.S. He has written articles featured in journals such as The Autism File and Good Autism Practice, books such as Silver Linings and Cutting-Edge Therapies for Autism and has been interviewed by media such as National Public Radio, BBC Television, Fox News Channel, The London Telegraph, and People Magazine.
Along with author Kate C. Wilde, he co-created the ACT (Autism Crisis Turnaround) protocol and accompanying courses. In addition to his work with families and educators over the past 22 years, Raun brings a distinctive qualification to the realm of autism treatment: his own personal history.
As a child, Raun was diagnosed with severe autism and recommended for lifelong institutionalization. Instead, his parents developed The Son-Rise Program®, which enabled their son to completely overcome his challenges. His story was recounted in the best-selling book, Son-Rise: The Miracle Continues, and the award-winning NBC-TV movie, Son-Rise: A Miracle of Love.