For those of you with Asperger's or autism, do you remember what it was like when you first got your diagnosis? For parents, have you wondered what was going on in your autism spectrum child's head? Rachel Cohen-Rottenberg's new book "The Uncharted Path" explores these questions and more. Cohen-Rottenberg was 50 years old when she was first diagnosed with Asperger's Syndrome. Her book is a wonderful and insightful exploration into a childhood living with undiagnosed Asperger's, and what it means and feels like to be an adult woman living with autism.
Cohen-Rottenberg always felt the odd one out at school, never able to make friends like all her peers seemed to be able to. The behavior of other kids was confusing and frightening to her. Nothing made sense. High school was an even more difficult and overwhelming place to be. Cohen-Rottenberg tried to mask her social deficits by copying the behavior of other girls, and to an extent, it worked. The many problems she had with the social world, however, persisted. College was an overwhelming place where she felt like an alien and no idea how to interact with others. So Cohen-Rottenberg escaped to Berkely, California, where she found a more accepting culture and group of people. Eventually, she found a successful career as a technical writer and got married. And then, at age 50, came the diagnosis. And that changed everything.
Cohen-Rottenberg's strength in this book is being able to let you get into the head of someone with Asperger's, and show you exactly what they think and feel. Others with Asperger's will gasp in recognition at so many descriptions that so well parallel their lives. Friends and family will gain much needed insight into their loved one. Cohen-Rottenberg is emotionally honest and skilled at relaying the stories from her childhood and adulthood that made her the person she is today. She aptly conveys what it is like to discover at age 50 why you have felt different from your peers all your life, and engages the reader fully as she describes how she had to learn to accept that her life was actually going to be a lot different than she planned it. She leaves no holds barred as she talks about the puzzling conundrums that come with an Asperger life.
"Unless someone tells me so explicitly, I cannot tell whether a group has accepted me. And even if someone tells me outright, how will I know that tomorrow that acceptance will remain? Certainly, I can look back and see that yesterday people liked me. They smiled at me. They joked with me. They gave me compliments. I felt reassured. But what about today? It’s a whole new day. What if today is the day that I screw up and have no idea that it’s happened? What if today I make a mistake, and I’m cast out?"
"Okay, smile. Make eye contact…No! No! Not that much! Pause. Say something helpful, but don’t jump in too fast…Wait…Wait…Now! Say something clever…Very good.People laughed…Now, make more eye contact…Okay, good. Act like you’re following the conversation…What? It’s winding down already? How do I exit gracefully? Help!Help!…Um…er…Time to walk away? Okay. I’m walking away now…Why do I always feel like such an idiot?"
Ultimately, though, Cohen-Rottenberg's book, "The Uncharted Path," is about coming to terms with a life that you never expected would happen. It's about learning to reframe who you are, and reframe your sense of self. It's the fine art of learning to change your expectations of how much you will be able to do at any given time, and not hate yourself for your limitations. It's the struggle of looking at your peers, and trying with all of your heart not to compare yourself to them. To accept and love yourself for your own unique gifts and strengths, instead of always wanting what everyone else has. This is a theme that will resonate with people far and wide - How do I accept myself? How do I come to terms with who I am? You don't need to be disabled or autistic to realize that Cohen-Rottenberg's words speak to the human condition that we all find ourselves in. A highly recommended read.
"I’d never wanted to be famous, but I once was full of promise. Could I have done the work my former classmates are doing? No, I couldn’t have—and yet, I can’t quite grasp why not. Intellectually, I know all the reasons: I know that raw intelligence isn’t everything; I know that I don’t understand or respect social politics; I know that I get overloaded in groups of more than two people. I know all of these things, but I still can’t quite understand what’s happened. The gulf between who I was supposed to be and who I am is so deep and so wide that mymind still can’t take it in and make any sense of it."
Rachel Cohen-Rottenberg writes about her life on her blog "Journeys with Autism," which can be found at http://www.journeyswithautism.com. To purchase this book, you can email her at Rachel@journeyswithautism.com
I wanted to call this "Visit with my mom Part 2," because I remember writing an entry on this exact same topic at almost this exact same time last year, but, well, that was a boring title. My mom visited me in Newport, Oregon this time last year, and we spent the day walking around going to beaches, which was was great. This year, she came once again, and I hoped once again to spend the day going to different beaches, only on a different coast (Maine instead of Oregon) - but alas, the weather and my life circumstances had other plans.
Not that I minded, though, in the end, as we still managed to have a good day together. The first half of the day was unfortunately devoted to clothes shopping. I say unfortunately because, for me, clothes shopping is the LAST, and I mean the LAST, thing on this earth that I would want to be doing. But, well. It was time. Or, more accurately, my hand was forced. Longer story that I don't feel like going into, but due to my extreme sensory issues and chemical sensitivities, getting new clothes is basically an impossibility, so I haven't in years. I had like one-two pairs of clothing and that was it for the last few years. Probably haven't gone clothes shopping since high school. But, one of the parts of living with roommates is that you have to make compromises and be sensitive to their needs, and my roommates very strongly suggested (err, required) that I get some more clothes, so off to Freeport we were.
Great lobster roll and fried fish place on edge of Freeport
Freeport, just in case you didn't know, is Hell on Earth. Funny, I never thought so as as kid. I thought of the Ben and Jerry's and the Wilbur's Candy Shoppe and, well, that's really all I thought of, because most of the rest of it is preppy clothing stores or high end gift stores, and hardly anything redeeming at all. But as a kid, ice cream and candy were enough. :)
And LL Bean, of course. If anyone outside of Maine knows where Freeport is, it's only because the LL Bean flagship store is probably the most popular tourist attraction in the state. One of my favorite things to do used to be to go to the LL Bean parking lot in the summer and count how many different states and provinces I could find. I usually got about half of them! There was no shortage of out of state plates this time, either. We took the parking spot of a French speaking family from Quebec, who was just leaving, after we had circled the parking lot several times.
Freeport is at its heart a tourist town, with similar stores to what you might see in a mall (with some exceptions), so it's no wonder I don't really like it. I think it has a lot of outlet stores too, I think, so I guess people like that. I wouldn't know. Anyway, this time, it was MOBBED with people, being a rainy day in summer and all, and not only that but there was some smell that pervaded that whole downtown area that made me feel like I was going to pass out the whole time I was there. Needless to say, I did NOT like Freeport. My mom shared my opinion. We both couldn't wait to get out of there. Guess we must be true Mainers after all.
At any rate, I was able to arrange for a "personal shopper" to meet me outside of LL Bean to look for clothes for me, so I didn't have to go in. Score one - or two or three - for customer service points for LL Bean, it was an excellent thing to do. We were right by a giant 14 foot LL Bean boot. Every few seconds random kids would climb on it to get their pictures taken by their adoring parents. There were so many kids and people, that a different kid sat on that thing like every 30 seconds. It was rather entertaining to watch, and kept me from going crazy while I waited for the clothes. I would have loved to get a picture, but didn't bring my camera due to the off and on rain.
I got lucky and found some canvas drawstring pants and and cotton tshirts, 2 of each, that worked, and then we got the hell out of there. The woman that helped us was very nice, though.
After a stop in Portland to check out another clothing store (2 pants) and go to Whole Foods for some resources (and a hair clip and ham for Marion), we were done with the shopping part of the day. Unfortunately, it was raining, lightly but still, for the first time in almost 2 months. Lovely luck, huh? We decided to go to Fort Williams in Cape Elizabeth to see the spectacular views of the ocean there anyway, and just brought along an umbrella. It was fun to walk on the worn dirt path alongside the crashing ocean waves, which crashed spectacularly in different patterns against the rock the whole way through. It was a short walk, and we eagerly made our way back at the end, eager to get out of the rain. The only other few hardy souls there all were tourists with cameras.
I remarked to my mom that, without even trying to, we had just gone to the 2 most popular tourist destinations in Maine - LL Bean and Portland Headlight (in the same place as Fort Williams.) Oh well, I guess sometimes they're tourist destinations for good reason.
No pictures as it was too rainy to take any.
Once home, I embarked on an ambitious and fervored campaign to wash the hell out of the clothes we'd just bought so I could actually wear them. I started at 8pm an didn't finish till nearly 3am. I seperated the clothes into 2 groups, and gave each group three cycles and a little time to soak. At 3am, I finished the last part and sighed in relief as I finally was able to start getting ready for bed.
I piled up all the clean t-shirts in one pile, amazed at the size of the pile, and the fact that I was actually looking at a pile of loose cotton t-shirts that would actually fit me and have a chance of being comfortable. I hadn't seen more than one or two of these very rare beasts in several years, and now I was looking at a pile of almost a dozen. It was a sight to behold - to me. It would mean absolutely nothing to someone who didn't know me. They'd wonder why there was what would probably seem to them a rather small pile of clothes sitting there, and why I'd actually taken a picture of it. But to me, it resembled quite an accomplishment.
My new shirts!
I managed to wear my first outfit today, and did all right in it. I am still very nervous about getting used to the new clothes, as that is hard for me, but I have the mindset for it, the desire and the drive, and the committment to ignore the discomfort for as long as possible at the beginning, knowing it will get better later. I *want* to have more clothes; it's just something that's always been difficult for me. I do not like declaring that something will happen before it does, so I will not make any predictions per se, but it looks like I am on the right road, and I look forward to the day where I can open a drawer of clothes and select one for the day just as easily as I could ten years ago, when my sensitivities were not nearly as bad (still there, but not as bad).
"We spent the whole day shopping," my mom said enthusiastically as we climbed in the door of my dad's house wearily, laden down with all our bags, "which was kind of interesting since Kate doesn't go into stores!" That sentence on its own could have mean a lot of things, and it mostly depends on tone of voice. But she said it with a laugh and a sparkle in her eyes, accepting the situation and laughing at the irony of it. Two years ago, it would have been much more likely to be an (understandable, for the situation) annoyed "What do you mean you can't go in stores? Why can't you? Can't you just for a little?" But this time, the acceptance was complete. I can only assume she saw the way I worked around my problems and still achieved the same means in the end, and accepted that this was the way I was, and was genuinely okay with it - or so it seemed. Such a simple statement, but to me it conveyed so much - acceptance, humor and joy. I was happy to share those qualities with her.
Before we left my dad's, we were greeted with the as of late rare gift of the sun, and took several pictures. My dad showed my mom how to use her new camera, while I documented the experience. I took as many cute kitty pictures as I could, as those are always fun. So somehow, I still ended up with 80 pictures; not bad for a mostly rainy day.
Eighty pictures and a lot of memories, that I can store for the future; of a family that loves me enough to step up to the plate and help me out when I need it (the clothes), who are understanding of my rather extreme at times needs and quirks, and try to accomodate them, and who are a part of my heart. You know that feeling when you didn't realize you were missing something until you find it again, and then you're delighted at how well it fits, how easy it is, how familiar it is, and how glad you are for the person in all their quirks and qualities that couldn't possibly belong to anyone else? Their sense of humor, the way they see the world, that is in some ways so close to your own? That is what seeing my mom was like; so although it might have rained, and although we didn't see every beach in Cape Elizabeth, and even though I had to spend half of it clothes shopping - it was still quite a good day.
My mom and dad: this picture came out awesome!
Bonus question: Does anyone know where the title of this post came from?
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."