What is joy? What is connection? When you're talking or writing about autism, that question comes up a lot. Simply put, autism spectrum disorders, including Asperger's, are a disorder of human connection. Or are they?
My definition of connection is two people sharing emotions or experiences in some meaningful way.
The world has a very set definition for how connection will look. The social norm is to express connection with others with a handshake, a hug, a glance of the eyes, or to do so physically. We have set rules for how much emotion is proper to show at any given time, and how much of yourself you are allowed to show any given person at any given time, depending on how well you know the person and what their relationship to you is.
Maddening rules, really, for someone who just wants to be themselves.
For a year and a half now, I have attended a self-improvement meet-up group where people talk again and again about their struggle to be themselves, to be authentic, to be vulnerable.
They talk about how hard it is to share their emotions, to believe that anyone wants to hear, to be true to themselves.
And there's me. I can't not be true to myself. When I talk, it is from the heart, every time. When I share, I search inside myself for whatever emotions might be lurking there and bring them out in full color. When I talk about myself, I don't edit, except occasionally for length and clarity. When I experience joy, I yell out, I scream out, I sing. I never learned the social norms that told me that I had to hide myself. I never learned the rules that our society dictates about social connection.
Sometimes, I feel like that's a bad thing. I look around me and feel that everyone is connecting on a level I will never reach, because they know the rules. And I want to be one of them, chatting, laughing, using casual social touch to show connection.
But other times, like when I read Jess's blog (adiaryofamom.wordpress.org) or when I go to this meetup group and listen to these stories, I wonder, I just wonder if my social isolation during my formative years might not have protected me from a worse fate - the fate of learning how to be everything but who you are. The pain of going through a life putting on a fake self and never really truly experiencing it as yourself. When I experience joy, it is nothing but pure. I have been called a "breath of fresh air" more times than I can count, and people - not all people, mind you, but enough - seem to like and be comfortable with my openness.
Connection can come in many different ways, and if you look closely, you will see that those on the spectrum are connecting intensely in their own ways - perhaps to the flash of sunlight on the carpet, to a song on the radio, to the feeling of a piece of fabric - but connecting nevertheless. When they share their feelings and experiences with others and find that others share them, then the connection is intense. But we have to be willing to see things in a different way, to get inside the head of someone who doesn't see things the same way we do, in order to share in their connection.
This world wasn't built for people who are open and direct, who live their lives with their heart on their sleeve. Most people on the autism spectrum are exactly this way, because they never learned the social rules that tell us to be any other way. As a result, they get hurt, again and again, and fail to fit in. They develop all kinds of negative self-concepts about themselves, because they think that failing to fit into a world whose rules were not taught to them means that they are horrible, awful people. But the truth is that some people just operate differently. And we can learn from them - we can learn about how to be ourselves, how to be truthful and honest in our conversations, how to let our emotions out and experience them as ourselves - and when we do, our connections with others will be that much stronger, that much more intense and meaningful. Maybe those with autism and Asperger's can teach us about connection after all.
The other day, I was on a bus when I heard the tail end of a conversation a man was having. I surmised from the bits and pieces I got that he was talking about his son, who has some sort of development disorder. And then I heard the words, said so casually by this rough and tumble looking man on a city bus, "We have to protect and nurture these kids, because when they're all grown up, they're the ones that are going to freaking change the world." Said so casually, in such an unexpected environment, but his words touched me to my very core. Validation - we need to nurture, encourage and help those with the label of autism, Asperger's or other developmental disorder, not treat them as different or wrong. Because their strenths - their honesty, their ability for deep thinking and perceptiveness, their pattern recognition abilities, their loyalty and dedication to a cause, their intense interests and tendency to treat everyone equally no matter who they are - are going to change the world one day.
If you liked that, you will love what my idol, Jess Wilson, has to say on her latest blog "Diary of a Mom." I will reprint part of it here ...
""My daughter is different. We can teach her appropriate and expected behavior until the cows come home (and we will, for, like it or not, it is in many ways the on-ramp to participation in the community), but she will always be different. One ‘behavior’ will give way to the next and the next again, for her expression of her internal world is not the same as that of most other denizens of the external world.
We can do our damnedest to educate those around her – to sensitize them to difference, to introduce them to other ways of thinking, feeling, experiencing the world. We can appeal to them for empathy and compassion, for recognition of shared humanity and God-willing, convince them to join us in a celebration of the glorious spectrum of human diversity. And we do. Jesus, we do.
And, while we do all that, we can enjoy the hell out of her, not just despite her differences but sometimes even BECAUSE of them. We can revel in the purity of her joy and learn from her how to express our own feelings without pretense, without filter, without worry for how they will be received. We can follow her on a journey that teaches us about ourselves, about our world, about how we connect with one another — and about just how flimsy our social constructs really are."
In short, we can live inside our fear for the future or we can say to hell with it and run alongside her as she blazes a path that leads us unwittingly to our own self-acceptance as we guide her to hers.
And we can invite everyone with whom we come into contact to join us on that journey. An appealing invitation, I dare say, for it leads to a place that is bathed in hope and love and a true sense of connection with one another and ourselves.
A place so damned happy you can’t help but squeal."
If you like this, please be sure to visit my other website, Accepting Asperger's. A lot of my older writing is stored here, including an editorial I once wrote for the Baltimore Sun. Click here to see it: Accepting Asperger's.
What's it really like to be a 20 something with Asperger's? On this blog, I hope to explore that question. But this blog is not just limited to an audience of people in their 20s - this is for anyone who ever wanted to know anything about autism. I plan to delve into the nature and experience of autism, and examine it from as many angles as possible. I would like to start a conversation between people with Asperger's or autism, parents of kids with autism spectrum disorders, and anyone who just wants to know more. Let's explore what autism means, together.
My goal is to start a discussion on and build a community of people affected by autism - parents and adults with ASD - so feel free to leave your two cents in the comments section of any post. If you're too shy for that, however, or want to speak to me personally, you may feel free to email me at KGoldfie@gmail.com.
Asperger's Book for Sale
Common Scents: Adventures with Autism and Chemical Sensitivity" is the story of a young woman's search for physical and emotional safety as she journeys through the mountains of the Cascades, small coastal towns on the Oregon coast, and out-of the-way towns in upstate New York. Along the way, she experiences things she would never have dreamed possible had she stayed in her Maine hometown, and begins to learn the power of human connection.
Common Scents is the story of the last three years of my life. It gives a gripping view of what it is like to experience the world as someone on the autistic spectrum, and some would say, is an entertaining travel story as well. Because of chemical sensitivities, I engaged on a three year journey for a place I could call home.
Comments from readers:
"The Asperger's element is remarkable. I feel that I understand my son better, so much better. I laughed at this part.... because I've stared at my son in the same way for the same thing." - mother of an Asperger's kid
"Your writing style is SO engaging and interesting. It brings me right into the subject and I always experience a little emotional punch towards the end. In other words, this is the third time I've teared-up reading your work. Kate, you've highlighted ALL the problems with how social skills are usually taught." - mother of ASD kid
"I stayed up entirely too late reading the first 14 pages. I can relate to so much of what you write. I really think you are expressing the true experience with MCS and autism in words that convey the experience." person with chemical sensitivity (MCS)
"Absolutely interesting, insightful and witty. You've blended together your three themes beautifully (Asperger's, MCS and travelling). It seems seamless."