Last night, I wrote the following article for submission to my local weekly paper. I’d like to get your comments, feedback, and constructive criticism before I send it in. Please let me know what you think.
Disabled Like Me: An Autistic Woman In Search of Kindred Souls
by Rachel Cohen-Rottenberg
If you are a typically abled person, you and I may have a great deal in common. I am married to a wonderful man. I have a teenage daughter getting ready to spread her wings. I love taking long walks in quiet places. I lose myself in creating things of beauty. I knit, I quilt, I sing, and I write. I try to eat healthy food, to exercise every day, to treat people with kindness, and to give a friendly hello to my neighbors.
Sometimes, I succeed. Sometimes, I don’t. In this regard, I am no different from you.
And yet, if you are a typically abled person, we live worlds apart. You see, I am autistic, and there are many things that I cannot do. I cannot go to parties or to restaurants; when too many people talk at once, I can’t distinguish one voice from another, and I become overwhelmed. I can’t go into stores with music playing and talk with others, because I can’t filter out background noise. In fact, there are stores in town that I cannot enter at all. The music is so loud that it assaults my nervous system and literally renders me incapable of thought.
I am able to speak, but sometimes, I have difficulty following the words that other people say. For this reason, talking on the telephone is an experience that I avoid at all costs. I have an extensive written vocabulary, but initiating and maintaining a typical social conversation is often beyond my grasp. Sometimes, I can’t find the words at all; at other times, I can’t find them quickly enough. Even when I find the words, I sometimes need to rest for hours or days afterward in order to recover from the effort.
Then again, there are people with whom I “click,” with whom talking is not a particularly difficult challenge at all. And then there are people with whom I am quite comfortable being almost entirely silent.
Despite my challenges, I do not consider myself a collection of deficits. In fact, I consider my autism my greatest strength. I am acutely empathetic and highly sensitive to all things emotional. I experience the visual world quite vividly and intensely. I have a childlike innocence that I value deeply. I am very direct and honest. I do not understand deception or cruelty. I think associatively and visually, and I arrive at insights and solutions impossible to locate with linear logic. I’m creative, intellectually curious, and fascinated by the diversity of the world. Much goes on beneath the surface.
Unfortunately for all of us—for you and for me—the word autism carries a stigma. I can’t count the number of times I’ve told someone I’m autistic and received a response along the lines of “Oh, I am so shocked and so sorry.” I’ve had friends back away. I’ve had potential allies in the community drop out of sight. I’ve seen people stare rudely at the noise-blocking headset I sometimes wear in public, and then I’ve seen them look away quickly, without a smile, without a wave, without acknowledgment that I am just like them, as though my disability has trumped my humanity.
In the year and a half since my autism diagnosis, I’ve learned firsthand what it means to be disabled. I’ve learned what it means to be invisible, to be marginalized, to be apart, to not be able to keep up, to not be understood, to not be seen as a person of equal value. I’ve known deep loneliness and isolation, and I’ve learned that these experiences are shared by many disabled people, whether our disabilities are visible or not.
I am fortunate in having a husband and a daughter who love me, friends spread throughout the country who support me, and places in the local community in which people welcome me as I am. And yet, I long for the friendship of other developmentally atypical people. I see other disabled people around me, and yet, I have not found a way to reach out directly. My sensory and communicative differences make reaching out problematic. And then, of course, there are people in the community with invisible disabilities, who look “typical” but experience the world in atypical ways. How are we to find each other?
I don’t know a better way than to write, so I am reaching out now, in the best way that I can. It matters not how old you are, what your disability is, or at what “severity” level a medical professional has diagnosed you. I am reaching out to say that I am here, that I would like to find you, and that I would like to affirm and celebrate who we are.
If you would like to connect, you can reach me by email at rachel@journeyswithautism.com. And if you see me around town, feel free to give me a friendly smile and say hello. It will mean the world to me.
Rachel Cohen-Rottenberg is a writer living in Brattleboro. Her memoir The Uncharted Path: My Journey with Late-Diagnosed Autism will be published later this year.
© 2010 by Rachel Cohen-Rottenberg
Good luck with finding a friends or two. It’s not easy…..
Tried to e-mail you yesterday to see if you were okay and it came back to me. Did you have your e-mail turned off.
Stay in touch!
Hi Lizzie,
Thanks for your good wishes.
I never have my email turned off. Did you send your email to rachel@journeyswithautism.com? If you sent it to my previous aspergerjourneys.com address, it wouldn’t have reached me. Please resend it!
I wish you lived in my town, I could meet you and introduce you to my friends with disabilities, they are very positive people and I like to bask in their positivity and hope it’s catching
Sometimes, though, I think it is easier to communicate in writing; dealing with real people if very hard sometimes (I just had a rather rough week with people I really shouldn’t mix with but it was a relative-in-law’s wedding. I really should out-law those particular in-laws…).
I think you’re very brave to publish this. I hope it all works out well and you find some kindred spirits in your neck of the woods.
I agree with misfit in regard to communicating in writing. So many times I get caught up in my husband’s tone or gestures that I misinterpret his words (hearing but not listening). We talk online all day via “chat”. I have to admit that in the evening I get caught off guard when we see each other at home. After all day of “chatting” what I interpreted in writing is completely different than what I interpret physically. Online he is just like anyone else. In person he is loud, animated and generally looks pissed off. =) I get confused. I wonder “what happened on the way home that has put him in a bad mood?”. My brain has trouble interpreting because what he looks like on the outside is not what’s going on inside. He is still the same guy I had been chatting with all day.
I think your letter is great and should be published. My husband believes he has a duty as a high functioning autistic, to help interpret and provide insight to NT’s. He believes that he and everyone like him can be a tool to understanding autism. He can speak for those who can’t.
I like that you are willing to address the “elephant in the room”. You go girl!
Rachel – that’s a beautifully written article and will do a great deal more than just bring you friends! I hope it does that too, of course! But it’s a great piece of advocacy and I hope the paper takes it.
Wonderful letter! I’d love to connect with you, it sounds like we have alot in common.
it is so true, “much goes on beneath the surface.” it took me a long time to realize my interior world—and how i experience the world at large—is much different than how most experience it. now that i know that it’s different and i have words, it’s sometimes difficult to stop talking about it. i want to express this to those not on the spectrum, but always something is missing.
i vent about this–well, maybe as you know, a little too often. it’s important to remember the gifts too. i do suspect i see colors differently, hear/feel music differently, solve problems a little differently, and that my inner world is much richer in some ways for this.
thanks for the reminder.
“loud, animated and generally looks pissed off”
I wonder if that is how I come across to people sometimes… doesn’t help that I also have rosacea and low heat tolerance, so I often look angry or upset when I am not… (much…).
The last few days I have really been wanting to hole up somewhere and shut everyone else out. Not easy with a husband and kids around.
Yep, writing is much, much easier…
A really beautifully written article. I hope that everyone who reads it will re-examine how they treat those in their community who are a bit different. Perhaps it will get some of your local stores to turn down their music as well.
I agree with you that communicating in the written form is far easier than in person. I’m fortunate I work in IT and most of my communication is written. Although I get really thrown off when I have been talking to people online and then someone comes up and wants to physically talk to me. I find it hard to switch channels so quickly.
Thanks for your feedback and support, everyone. I’ve submitted the article (with a few changes), and I’m hoping it will be published in June. (Our local monthly, which published my column on autism last summer, is becoming a weekly paper on June 2, so hopefully, I won’t have long to wait!) I’ll post a link when the article is published.
Best of luck, as always.
Thanks, John.
I have a feeling this article was not only written for educational purposes, helping other understand autism, but also very cathartic for you? I’m not autistic but sometimes it takes a good while for that right friend to come along and I think we all have those feelings of not fitting in in one way or another..
rachel, this is a great piece of writing. i am constantly amazed at how wonderful us aspie gals (and guys) really are, the more i get to know others like me, i find how varied and eclectic we are, yet how homogenous in the way we accept and embrace eccentricities in ourselves and others, which is so sadly lacking (though not always but mostly) in the general neurotypical population… sure i’ve been inside a crazy aspie gal bitchfight before, caught in the middle of warring factions and completely discombobulated, but that is a so normal thing for ALL females is it not?… i hope that through your writing, more people will come to understand the aspie condition as a blessing rather than a hindrance to loving relationships.