I just finished reading a wonderful book called "Love, Anthony" by Lisa Genova. While I originally picked it up because it was about autism, it is actually about so much more. The author artfully combines the themes of loss, grieving, autism, and finding the strength to redefine your life after a tragedy. I found myself stopping every few pages to reflect on what I had just read and try to figure out how I could apply it to my own life.
One of the more meaningful passages occurs when the main character, on a whim, stops in a church and knocks on the door of a priest, after lighting a candle for her dead son.
She braces herself to hear the same tired platitudes she had heard a million times before, braces herself to be summarily dismissed after some trite statement that mean nothing to her. After all, what could anyone possibly say or do that would lessen the pain of losing your son at eight years old? She asks the priest how she could possibly believe in God. How she could possibly find God in a world that would allow that to happen. "He's not answering my prayers," she said.
The priest tells her she won't hear God if she tries to listen with her ears. You have to listen with your heart, he says. It takes her a while, but eventually she figures out how to listen with her heart.
When I got home from services at the synagogue I started going to a few months ago tonight, I wrote to myself, "I found myself humming along to the songs even though I still have no idea how to even approximate the words." For once, that felt like enough. I felt connected and peaceful and tried to focus on that and not on the other less harmonious thoughts rattling around my brain. I felt a sense of positive energy and, for a while, couldn't stop smiling. It's so much easier when you're not obsessed with how you don't know the words, or thinking about what other people have that you don't. I was trying to listen with my ears, but found instead how meaningful it is to listen with your heart. Your ears and brain will constantly judge "Am I doing this right?", but your heart knows what's right. When you're calm enough, if you go with your heart, you will get to the space you were meant to be in.
I often have trouble getting into this mental space of being able to hear with my heart. Usually negative emotions keep me from hearing anything at all, with my heart or my ears. When I consider something, I analyze it with logic borne of my experiences, and often have trouble imagining something that I haven't experienced exists. That's not where love exists, though. Love is a feeling that you have to get past analysis to feel.
When I experience the feeling of connection with someone else, I calm down, and my heart opens up. I can feel the love and spirit in the energy around me. Then, at least for an hour, I feel filled up and smile. I don't believe in a judgemental God, but I believe in the love of other people. Feeling connection in the singing of other people seems like a good use of a religious space to me... regardless of whether or not you know the words or religious laws.
I pulled myself out of bed, grumbling, wondering if I could possibly handle the day after having gotten so little sleep. Wondering if it was all worth it, to get up that early and leave the apartment. What would happen today?
The chair had a green plush bottom, and she moved it without me having to ask, knowing it was the only chair I'd sit in. I was unexpectedly moved by this gesture, so used to having to beg and plead and describe and explain my needs again and again before anyone would even start to consider them. Nonverbal gestures sure can be powerful when their message gets through.
I grabbed the wrong bag before I left and left without my wallet or keys. I was meeting a friend to get back a sweater I had left in his car, and thought I could ask him for a few dollars to get the goodies that were so essential to my being able to calm myself in public. He helped me without even thinking twice. I felt honored.
Embedded in a casual conversation with a girl who works at the coffee shop I go to, I asked her about her Halloween plans. She mentioned a party she was going to, and before the usual jealousy could overtake me, she said "You could come too if you wanted, but I know it would probably be a bit loud for you." Oh, the quiet joy, of hearing those words, words I wished for in nearly every conversation I've had in my thirty years of living, the simple words of being included. She was right, it would be too loud. But she invited me anyway. And my heart sung.
The conversation with the friend I met this afternoon at the coffee shop was flowing, and rich, and beautiful. It started in a natural place, and meandered around considering topics of mutual interest for a relaxed but rich 90 minutes until my friend had to go. It filled my heart, and was so much better than the brain dump or more one sided conversations I often get into with people when I'm stressed and need to vent. Oh, two sided mutual conversations, I love you! And I have had far too little of you. Oh, how I love conversations about how to have conversations. To me, there is nothing more important to consider than how to express and receive love for other people. How I love energy that flows between two people and doesn't feel like it gets stuck in one person or the other.
Frustrated that I had to go back to the gelato place after I left my sweater there, I pleaded and cajoled myself to walk. Feeling exhausted after so much activity and too little time to process, I was sure I was headed for some dismal uncertain emotional future. I took Congress to Exchange instead of my usual meandering walk, to get the errand over with as soon as possible. But when I got there, a young man with warm eyes was standing and talking to the girl who worked there. His energy was inviting, and I couldn't resist. Ninety minutes and two life stories shared later, he left, and I sat, trying to just absorb all of my feelings without judging them.
When I was ready to leave, it was raining, and I hadn't brought an umbrella. I panicked, knowing that the feeling of rain against my skin was one of the worst sensory experiences possible for me, especially for a 30 minute walk. But no sooner had I expressed this than the girl who worked at the shop offered me the store's extra umbrella, saying she knew I'd bring it back. I was so caught up in love. I was hungry and tired and loved.
That walk back home up Congress passed quickly, without any debate about which side of the street was less depressing or looking in windows being jealous of other people's lives. I sat and contemplated. I felt loved, and the idea occurred to me that maybe, just maybe this time I could remember that this feeling of love existed in the world even when I got up the next morning. It clearly happened nearly every time I left the building. Maybe I didn't have to spend every single day chasing after it and engaging again and again just to remind myself love existed. Could I feel it without being right in the middle of it? Could I? I didn't know. I still don't. But I started to imagine what that would feel like.
Today, I felt loved. And I want to tell my future self reading this that love exists in the world and can be accessed any time you want it. You don't need to feel needy and panicked and empty if you're not experiencing it all the time. You can remember you're loved even when it's not obvious at the moment you're in. People seem to express love given the chance.
As Alan Jackson sings, "Faith, hope and love are some good things he gave us," and what a fitting end to my day hearing that song on the radio was. Pain will always exist. It's not going anywhere. But maybe love is like a muscle that needs to be consistently exercised a while before you can start to feel it. Maybe it grows. Maybe, just maybe, it's blossoming.
"Most people take a lot longer to get as genuine as you are," said the woman I was working with, after observing me a for a few months.
Flattered, I nevertheless tried to figure out what she meant. Weren't people either genuine or not? How did time change that?
After a lifetime that included a lot of social isolation, I have spent several months interacting with a large number of people and trying to figure out who I am in the midst of them. I aim for deep and meaningful conversations, and each conversation changes my mind just a little bit about my place in or the meaning of the world - as all good conversations should. This is my conclusion from my most recent interactions: Not being able to interact well with idiots is not a disability.
Allow me to explain, before you bristle at my word choice. There are other ways to describe it, of course. But none that would have as much immediate impact. None that would express the emotional intensity.
"Everyone in high school," my friend who happened to be my former guidance counselor told me, "sees everyone else through the lens of adolescence. Their perception is skewed." She went on to explain that when you're a teenager, you are almost by definition insecure, not sure who you should be. Your emotions are raw, and everything likely feels a lot more intense and scary. People have different ways of dealing with this. Some put on personas of pretending to know it all, personas of confidence and happiness. From what I can gather, that was true of the young man responsible for the most recent school shooting in Washington state. Everyone seems like they have it together, but inside, they're scared and confused.
Some are the artsy type, that turn to writing, music or theatre to express their emotions. Some turn to counter-culture styles of dress and behavior, such as gothic or wearing all black. Some bully others to feel better about themselves. Some drink or do drugs. Some get depressed and try to harm themselves. But everyone feels these emotions, although they try to hide it. Most pretend not to.
I find myself at age 30 doing a post-mortem dissection of sorts to try to figure out who I was, so I can figure out who I am now. So I can figure out where to go next. I didn't put on a persona in high school, or now. I didn't pretend to be confident. I didn't try different ways of pretending to be other people to figure out who I was. I just.... was me. I was me. And I was completely bewildered by the people around me.
Who was I? Well, as far as I can remember, the pre-adolescent me liked cats. A lot. She liked talking with adults. She was very emotionally expressive. She liked to read and write. She was very highly affected by what went on in her world and spent a lot of time thinking. She liked to play word and board games with the babysitters hired to watch her. She was very engaging with those who engaged her.
But among her peers, she was quiet, and, again, bewildered. For a long time, she didn't really even notice these other kids were there, unless they posed a threat to her. Which was often, unfortunately, but they were mere annoyances. Books were her friends. When she did finally notice, as a teenager, them having fun being with each other, she wanted in with that too. But she had no idea how to get it. They lacked a common language. Her peers talked in slang and seemed to go out of their way to avoid talking about how they felt about anything. She would write pages and pages about her feelings and thought a lot. They had no common interests. She felt threatened by their bravado, their pretend confidence.
She concluded there was something wrong with her, because she clearly couldn't communicate with these other beings that she was forced to spend all of her time with. Look at the way they communicate, look at how happy they are, there must be something wrong with me, she thought.
Meanwhile, a poem was written about her in a school literary magazine, wondering "I wish I knew who she was, she looks so happy." This the same year she spent her all of her time on depression websites, convinced she wasn't who she was supposed to be.
Is everyone just looking at each other wishing they could be each other? Why can't we be more honest about who we are, so people could really know us? We'd feel more fulfilled, and others would too, because they'd stop being so jealous. We could all stop being jealous and realize that all our lives have their ups and downs. We could understand what "real" is, and not compare ourselves to characters in TV shows and movies living fake, airbrushed, perfect lives.
I've always been able to communicate well with adults. As a kid and as an adult myself. I just can't communicate well with people who are insecure and pretending to be someone they're not. I am deep and real and sincere, and I want honest communication. I was not even really aware the rest of the world wasn't like that until recently.
I communicate very well with authentic people. Is it any surprise I didn't socialize well with high school or even college aged kids? Just by virtue of developmental stage, they are insecure and inauthentic. So defining myself by how well I socialized with that particular group of people is lunacy. It's one group of people. That's all.
When I finally got a label of Asperger's at age 21, I clung to it like a life raft as an explanation for why I was so *wrong*, why I stuck out like a sore thumb. But nearly ten years of clinging to it is beginning to seem like too much. Self-acceptance would be a much stronger, more effective drug if I could get it, than a continued focus on my disability label.
Sensory sensitivities, yes. Different ways of thinking? Yes, but so does everyone in some way. Lack of social ability? I guess that depends on who's doing the judging, but I'm going to go with no. Sometimes I wonder if I am actually ahead of where most other people are, not behind. Maybe I have to wait for them to catch up, or maybe I just have to keep trying as hard as I can to find ways to socialize with the ones who have already caught up. This usually ends up being people twice my age, people who are not usually looking for friends my age, and this frustrates me greatly. Perhaps that reality will change in time.
I don't care who you are, age, gender, appearance, interests, occupation, or background. If you're authentic and show genuine emotion, about anything at all, I want to talk to you. I have a love affair with real people. Why don't you all join me in figuring out how to love yourselves, because while it might take a while, the combined light of all of us shining the light of who we are will be enough to light up all the whole planet. By showing who we are, we can help fight depression, loneliness, alcoholism, anxiety, suicide attempts, and a variety of other mental and stress related physical health conditions simply because people will know, perhaps for the first time, that they are not alone.
That's all it takes. Having the courage to say what you REALLY think, not what you think is appropriate. Having the guts to show your emotions, not wonder if they fit the image of some robotic Stepford Wife that Hollywood has brainwashed so many of us into thinking we should be. Do you think you can't be liked because you're overweight, labeled with some disability or another, short, a member of a marginalized race or other class of people? Guess what, you're part of the world too. Step up and let your light shine, because when you proudly show who you are, you give someone else the courage to do so too. One by one, we can all step forward and show who we are. One by one, we can build a world where we walk around saying "Hey! I know you! You're just like me!" instead of "Did you see what she was wearing?" or "I can't possibly be liked by another person unless I have those diamond earings." Somehow I think this new way will create just a little more happiness than the old way. Happiness is good for the planet. Happiness is good for our survival. For those who care about making money and economics... happiness is good for productivity, too. In fact, whatever cause you care about... happiness will help it.
Happiness starts with letting your light shine, with finding a way to come to terms with who you are and then letting the people around see your passions, thoughts, desires, personhood. That hole in your heart that feels empty so much of the time... you may find it filled when you let your light shine. You may be hurt sometimes too, but it's worth the price.
I often find that older people tend to be more genuine, perhaps because they've had more time to conclude that playing games isn't worth it. They sometimes feel they have less to lose by showing themselves. I beseech anyone reading this, let's not wait so long to love ourselves.
I have recently started going to a local synagogue to rediscover my Jewish roots and community and wrote this for their website blog (hopefully). I wasn't going to post it here but then decided to. Slightly off topic, but still about finding community, so. Fits well enough.
My First Simchat Torah Celebration
The blue and white letters of the small paper flag attracted me. "Rejoice and Be Happy on Simchat Torah," it said on one side, with festive colors and decorations on the other. It felt deliciously rebellious somehow. Maybe it was yet another vestige of growing up in a town where I didn't see a single other person like me. Seeing Hebrew printed on flags, seeing a flag that celebrated, in two different languages, a holiday I had never even heard of a week previously excited and delighted me. It seemed somehow long awaited proof that I existed. I hadn't realized how much I was missing until I found it. What a perfect melding of the commercialism we are all so much a part of and the Judaism I had only been aware of in books in this one simple paper flag.
Each generation rebels against their parents in their own special way, and for my parents, it was eschewing the strict religious rituals they had grown up with. For me, it meant taking tentative steps to discover all that I had never even been told existed, and taking steps to try to figure out if there is a way to make it meaningful and relevant for me. Just a small paper flag, as commercial and pedestrian as you can get. An item that probably cost a few pennies to manafacture, the kind you might see in Party City along with all the other party merchandise I had loved so much as a kid. But this small paper flag was not just any flag. It had Hebrew on it. It represented a universe I hadn't even know existed. It represented the promise of discovering a new world, and the hope of there being something in this world that would be useful to me. I stuck the flag on my kitchen counter so that I would be reminded of it every time I passed by.
When I looked at the calendar of events for the synagogue a few weeks ago and saw the words "Simchat Torah," I thought it must have been a typo. What does that mean, I thought? What could that possibly mean? I had to google it. When I learned what would happen, I asked if I could take pictures and write a blog on it.
Simchat Torah is a holiday where people dance with Torahs. I made endless comparisons to "Dancing with Wolves" as I told my friends what I was planning on doing. The humor was mostly lost on them. For anyone who has not been to a Simchat Torah celebration, the Torah is unrolled all the way out. People stand in a circle and hold it, and the rabbi talks about the most important parts. A klezmer band plays traditional Jewish music and people dance with Torahs before that. They hand off the Torah to each other and dance in a circle, holding hands. As squeamish as I am holding hands, I made myself try it for a few minutes. My conclusion is that I'm better at documenting group dancing than being a part of it. It is a joyous event with lots of laughter and celebration.
The night started with kids from the religious school being called up for what is known as Consecration. This is an event to celebrate the official beginning of their religious school, and usually done for the first graders. All the kids got miniature Torahs, which were very cute, as well as a certificate to help them go to Jewish summer camp and a letter addressed to them. The kids were adorable.
People were upbeat and happy, and since I was focused on taking pictures instead of trying to figure out how to be a part of things, I was happy too. The particular religious meaning of the ceremony is still new to me, but the significance of being surrounded by a very specific kind of Jewish culture was not. When I talked to my dad on the phone about it, he understood that while we have never been a particularly religious family, Jewish culture is something that you can sometimes long for even when you've never had it before. Or perhaps Jewish culture is bred into you even in a family that doesn't celebrate any but the most popularized of holidays without you even realizing it, and being surrounded by people who are part of this culture feels like coming home again even when you don't know the most basic of religious principles. Either way, I will save my dime store Simchat Torah flag and wave it in my friends' face when they come over to visit, proud that I finally have a community I can be part of.
The Importance of Positive Role Models for Socially Different Kids
About two months ago, I started going to a local synagogue on a regular basis to participate in services. I did so mostly out of a desire to find some sort of community in a life where I felt more than a little adrift. I am still working on the religious aspect of it, but in the meantime, I found something I had never expected to find while at this synagogue. I found a new way to look at my past.
I was diagnosed with Asperger's Syndrome, an autism spectrum disorder that is characterized by problems with social interaction and sensory processing issues, when I was 21. I had been a straight A student in my suburban high school, but had always struggled socially. I didn't make my first friend until I was 16. My desperate pleas for answers as to why I was so different fell on deaf ears when I was in school. There were no role models for difference in my high school. Doing well academically was prized above all else, and if you got good grades, then no one would ever consider that you would need any other kind of help in any other area of your life. Especially if you didn't have behavior problems. Anxiety apparently was not considered a problem worthy of intervention.
I didn't talk like the other kids. I didn't have the same interests. I didn't dress the same way. I could see so clearly that I was different. Being different in itself is not a disability. Of course not. But there was no one around to model difference in a healthy way and tell me that. There were no examples of people being different and proud. We were homogenous, racially, religiously, and in every other way possible. You didn't see people with disabilities, or even people of other races or backgrounds. I concluded something must be very wrong with me, because no one could ever put words or labels to my experience.
I sought solace on the Internet. Since I didn't have the language I have now - Asperger's and autism - to use to find like-minded people, I hung out in mental health and depression communities. While the support was better than nothing, it was far from the most appropriate and healthy role models for a 13 year old kid to have. I struggled with thoughts of self-harm for many years after, because it was the only coping method I could find offered to me in the communities that I was a part of. No other communities were accessible to me. I had no extracurricular activities, no mentors, no people of any kind that could point to me ways of actually enjoying the world, so I ended up spending all my time with people whose only goal was to survive it.
Now, nearly ten years into researching and participating in a wide variety of autism and Asperger's communities both online and off, I am so grateful for the language to describe who I am. I am so grateful to have had the opportunity to meet people like me in several different cities, and to see people living happily with differences of all kinds. I am still blown away when I see representations of myself in other people, because for so long I didn't think any one else like me existed. This simple language and knowledge that there are others like me has given me the ability to live my life with a level of confidence and pride that simply would not have been possible before.
I see such a difference in kids who were raised knowing about their autism from an early age, who had supportive parents and positive role models. They're aware that they're different, but they seem nonplussed about it. They don't seem as likely to fall prey to the depression that comes from not knowing what's wrong with you. They understand and appreciate their strengths, and have a dazzling array of resources to choose from to combat their weaknesses. They understand that slow and steady wins the race. They're comfortable with who they are.
At the synagogue I've been going to, I've met probably close to a dozen people from my hometown, which is just far away enough and un-Jewish enough for that to seem shocking every time it happens. These people tell me stories of pulling their kids out of the high school there because they feel that there are not enough resources and role models for their socially awkward, different kids. I am learning that my story is not unique. It makes me wonder if there is anything I personally can do to prevent my fate from happening to a new generation of quirky but wonderful kids whose only fault was to be born a little different in a society that doesn't know how to deal with difference. I want these kids to know that there are other people like them, whatever their difference may be. I want them to know that there is more to life than getting A's on a test. I want them to know what it feels like to be valued for who they are. Whether it be with more extracurricular groups, or assemblies with speakers who have some sort of difference, whether it be reading assignments or volunteer opportunities or what have you, our students need to be exposed to other ways of living and experiencing the world. You don't always know when someone is desperately searching for a role model for a difference that isn't always apparent to you. Everyone should have the opportunity to feel good about themselves. Book learning can be picked up at any time in one's life, but the groundwork for positive self-esteem and self-confidence is something that is awfully hard to recover if not built from an early age. Schools need to work at least as hard at creating emotionally safe environments for kids to grow in as they do at teaching academics, if they want all of that academic knowledge to be used for something. What good is factual knowledge in a mind that has been broken emotionally? There is hope with exposure to different role models.
Amazing article , I like this paragraph in particular
"Morgan took a deep breath, pondered this question some, and then said, haltingly, "People think I don't listen, but I do. Teacher always says, 'Pay attention, sweet boy!' but I am paying attention. It's hard. I pay attention to everything, all at the same time. I can't pay attention to just one thing... I can't always use my words."
This is how I feel much of the time. There is so much coming at me. I can't DO half the things I want to do because I can't focus on the right things long enough. But I get a lot out of what I do focus on. At the grocery store last night I saw a woman had a notebook with a list on the conveyor belt, on beautiful rainbow paper and the most beautiful handwriting. I commented on how beautiful the paper and handwriting were to her. I noticed she said "For Speech Tx room" and knew that must mean speech therapy, so asked her if she was a speech therapist. She said she was. We got into a conversation on autism, in 5 minutes with a random stranger because I noticed her handwriting. As she left she said "Thank you so much for complimenting my handwriting" in a really genuine emotion tone of voice. So maybe, sometimes having too much attention to detail can make people feel heard and seen. That's not a bad thing.
Another night at the same store, a woman was having a seizure of some sort out front in the parking lot. People gathered around to see if they could help. I forget the details now, but it ended in me having a conversation with one of the employees there about autism, and learning about a possible place where I might be able to volunteer with people with disabilities because her son has autism and goes there. Being aware of what's going on around you... sometimes it pays.
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."