Autism Cure? The Spectrum Stands for Diversity, Not Disease.
We have labeled autism an epidemic and tried diligently to fix this problem by pumping millions of dollars into therapies, research, drugs or when all else fails- strait jackets and jails.
But maybe, just maybe people with autism know something those of us without autism don’t. Maybe, just maybe they are in touch with some of the secrets that our European ancestors lost but are still alive in modern “tribal” cultures. And maybe, just maybe if we suspended our judgments about what makes life worthwhile and listened to what people on the autism spectrum have to say we would spend a lot less time trying to make them more like us and spend more time trying to be a little more like them.
Skeptical or offended that I would suggest such a thing? Or just curious about what people with autism might have in common with “tribal” cultures? Then keep reading. I promise - you will have the opportunity to see the world, autism and possibly even yourself from a new perspective.
Now that’s worth 5 or 10 minutes of your time isn’t it?
Lesson #1: Get in Tune with Your Body and Your True Nature
Most of us who are neurotypical (not autistic) are not very good at being in touch with how we feel, noticing the details of our bodies in space, or the world around us. As a matter of fact we avoid “feeling” any unpleasant physical and emotional sensations whenever possible.
In contrast, many people on the spectrum are gifted with an amazing ability to see, hear, taste, touch and smell the most subtle sensations which go unnoticed by the rest of us and like the Arapaho man who can track his brother through the mountains by reading the broken twigs and depressions in the dirt, the sensitive person with autism notices when something on the shelf is even a millimeter out of place.
So you can actually get in touch with yourself and your environment by being more autistic.
pay more attention to the subtle things in your body and your environment that you have a tendency to overlook or ignore. Focus on the sights, smells, textures, tastes and sounds around you.
- Instead of worrying about what your body looks like to other people or judging your appearance as “good” or “bad”, pay attention to how each part of your body feels & moves, what your clothes sound like when they rustle and how your accessories, glasses, shoes and hair feel on your body and in space.
This is a sensual way to be in the world and many people on the autism spectrum are very gifted with this kind of awareness.
In some cultures, communities still come together at times like birth and death to sing or chant and play the drum. The drum vibrates the ground and beats in time with the human heart to create a soothing and invigorating effect that pulses throughout the body. Our European ancestors understood the value of this experience (think Celtic music in Europe with drums and bagpipes or Cajun music with spoons and washboards).
Oftentimes, people on the spectrum create experiences for themselves so they can give their bodies this kind of sensory input. Spinning in circles, stomping, rocking back and forth, rubbing fingers together, humming or repeating words over and over again all provide rhythmic stimulation and feedback for the body that are not only missing but openly discouraged in our "modern" world.
We assume that these behaviors are unacceptable and consequently a lot of effort has gone into helping people with autism decrease or eliminate these sensory seeking behaviors. But there are cultures today that encourage the creative process and problem solving through repetitive bodily movements which are actually believed to stimulate thinking. These cultures recognize repetitive body movements and vibrations as a way to keep in touch with our true nature as sensual (feeling) beings and many people with autism just instinctively know how to do this.
Perhaps we would all be a little better off if we just got rid of the social rule that prohibits these harmless actions from being displayed in public and gave rocking or stomping around the room a try at times when we are feeling stressed or stumped on a project. Instead of trying to discourage someone with autism from repetitive movements, join them in their sensory activity for a change. Or if that just seems too radical, at least turn on the music and dance a little more often.
Lesson #2: Don't Be Afraid to Tell or Hear the Truth
How many times have you avoided telling the truth because you didn't want to hurt someone's feelings or create conflict? We learn at a very early age that it's not "polite" to point out when you don't like someone's shirt, hairstyle or the gift they gave you for your birthday. And it is considered to be an insult if you openly observe they are overweight or going bald.
Most people with autism don't view the world this way. They see facts and the observations they make about these facts as neutral. In other words, they don't make a value judgement of "good" or "bad" on the fact that someone is losing their hair or has a dirty house. They just point these observations out the way a scientist would make note of what they observe in an unbiased manner.
In the Chinese culture people are often given nicknames based on distinctive features that would be embarrassing in our culture such as a big nose or a lazy eye . For example you might call a friend "Fat Li" or "Big Head Fa". Instead of pretending these characteristics do not exist, these outstanding characteristics are normalized between Chinese friends.
Some of the great sages from India have encouraged people to not be personally offended when others tell us the truth as they see it. They say "There is no reason to be upset. If someone tells you the truth, then accept it and do something about it if it is something you want to change. If you don't agree with the person or don't want to change it then you still have nothing to be upset about because it is not a problem".
So the lesson here is two-fold:
- It's about being honest when you need to tell the truth to set a boundary for yourself or point something out to benefit the other person.
- But it's also about not being offended or upset when someone shares their truth with you. Your emotional status is not dependent on what other people say or think about you.
The next time someone asks you to do something that you don't have time for, let them know you are really too busy instead of agreeing to take on too much work.
The next time someone asks if you like their new hair style, let them know you prefer the old style better so they can make an informed decision the next time they go to the stylist.
More importantly, the next time someone tells you the brutal truth, don't get angry with them or let it hurt your feelings. Thank them for having the courage to be honest and decide if you will use that information to make different choices in the future.
Lesson #3: Do Not Fear Death and Do Not Avoid Talking About It
Family members often express concern about how their child or spouse with autism handles death. Maybe they don’t cry or show any sadness. Instead they just shrug and say- “Everyone dies.” Or they seem obsessed with the concept of death and ask relentless questions like “what color was Aunt Freda’s skin when she died?” These responses often make people without autism very uncomfortable and they want help to “fix it” or teach the person with autism to respond differently.
There are usually two reasons people on the spectrum respond to death the way they do. First, death is an abstract concept. Some people with autism have a hard time understanding it and asking a lot of questions is their way to figure it out.
And secondly, many people with autism just aren’t afraid of death. They view it as a natural part of living. A biological fact of life to simply be accepted.
If you think that asking questions about what someone’s skin looks like when they die is morbid and insensitive, it is because we belong to a culture that hides the physical process of death- We go to great lengths to make sure the corpse looks like the person when they were alive and we cover up the casket quickly, so that what happens after death remains unseen.
In some cultures, death is much more integrated into daily life. It’s talked about and meditated on regularly and family members actually participate in preparing the body and bury or cremate their loved ones. In Madagascar, the dead are even sometimes removed from their tombs and placed in new shrouds in a special ceremony before being reburied. Cultures that participate directly in preparation and burial rather than leaving these details up to a funeral home have established a way for people to overcome their apprehensions by allowing community members to witness the stages that a body goes through at death. Avoidance only increases apprehension, while facing reality on a regular basis decreases fear.
Perhaps instead of expecting people with autism to respond to death in a non-autistic way, we should ask some of the same questions they do and become more familiar with death.
- Talk to someone you know who has autism and find out how and why they view death the way they do. If they are willing to talk about it, ask specific questions about how they define death, how they "feel" about it, their spiritual beliefs, their questions and their thoughts about their own mortality or the death of pets or people they care about.
You actually might discover some very healthy and useful perspectives that allow you to come to terms with your own mortality and the mortality of the people you love.
(Special thanks to my old friend Shane White who introduced me to Terror Management Theory, those members of the Wind River Arapaho Tribe who have shared the power of the drum and showed me how they skillfully track through the mountains, the Tom family who taught me about Chinese nicknames, Marcel Brou who taught me about the importance of drums in his ethnic group in The Ivory Coast, Christian who shared the experience of his mother's death and ceremony in his home in Freetown, Sierra Leone, Patricia Marin and Le Bagad De Saint Nazaire who took me to a small bagpipe festival in Brittany (the music is still ringing in my ears!) and the many Neurodiverse individuals and their families who have generously shared their personal experiences, knowledge and wisdom- especially Mick Prangsbøll, Sue Taylor and my daughter Diana Boucher who have each made significant contributions to the book Autism Translated and incidentally this article.
I use the terms "us" and "them" in this article to point out positive "autistic" traits, but ultimately it's not really "us" and "them". It's just "all of us working together".)
Author and Artist Landon Bryce shares his unique take on autism in this charming illustrated book.
- Amazon.com: I Love Being My Own Autistic Self eBook: Landon Bryce: Kindle Store
Amazon.com: I Love Being My Own Autistic Self eBook: Landon Bryce: Kindle Store
More by this Author
- 4What Does it Feel Like to Have a Sensory Integration Disorder? People with High Functioning Autism Tell Their Stories
Part 2 of a three part series about sensory integration disorder (SID) in individuals with high functioning autism (HFA). Individuals with sensory integration disorder share their experiences.
Autism affects females differently. Girls and women are often better able to "fit in" and develop effective coping mechanisms but lack of awareness can result in unmet needs and untapped potential.
Sensory integration disorder is common but often misunderstood and unrecognized in Autism, Asperger's and PDD-NOS. Learn the facts about SID and autism.