listen, i never said i was oprah

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But that doesn’t mean that I’m not willing to try.

So, picture me sitting here with PERFECT make-up and GAW-JUS hair on my PERFECT couch with my legs folded ever so flatteringly so that one Christian Louboutin shoe is folded delicately over the other.

OK, got the image? Good, let’s go with that.

Lights!

Camera!

Action!

Standing up and looking directly into the camera with my very best ‘it’s just us girls’ look …

OPRAHJESS- Kate Goldfield always knew that her brain functioned differently from those of other people. Though her parents and counselors minimized her challenges as a child, Kate always knew that her differences ran deeper than the surface. She knew that she was different and for the better part of her life, she struggled to understand why.

Much of that changed in 2005, when, at the age of twenty-one, Kate was diagnosed with Asperger’s Syndrome, leading her to a better understanding of why her mind works the way that it does.

Three years ago, Kate was also diagnosed with a condition called Multiple Chemical Sensitivity (MCS), beginning an incredible two-year odyssey in which she crisscrossed the country, desperately searching for a place to call home.

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Cue some cool, Oprah-y music as Kate walks out onto the stage.

As we sit, I’ll say something about how Kate has written a book, pretending to have actually read it cover to cover, although a member of my staff has actually just spoon-fed it to me in summary form, dog-earing the pages to make it look as though I’ve carried it with me for days. (O, I love you, girl, but you can’t seriously read every single one of them, can you? I mean, really?)

***

OPRAHJESS: Kate, let’s start with a description of your book, Common Scents: Adventures in Autism and Chemical Sensitivity. Can you tell us about it?

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KATE: Do you mind if I quote from my book proposal?

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OPRAHJESS: I don’t see why not. Seeing as I have no idea what I’m doing here (other than rockin’ PERFECT make-up and GAW-JUS hair on my PERFECT couch with my legs folded ever so flatteringly so that one Christian Louboutin shoe is folded delicately over the other), I’d say we can just make up the rules as we go along. Mmmkay?

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(Since that last part didn’t actually happen, Kate didn’t respond to it, so let’s just move on to her real response to my original question, before I rudely interrupted her)

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KATE: I would say that Common Scents: Adventures in Autism and Chemical Sensitivity is a compelling life journey that will be welcomed by anyone looking to understand what it’s like to live with Asperger’s. You will enter the head of someone with Asperger’s and see how they think; you will better understand and appreciate your friends and loved ones after having read this book. People with Asperger’s, I hope, will be able to relate to me and get tips for how to better form their own relationships.

But the book goes beyond Asperger’s, to include the challenge of multiple chemical sensitivity (MCS). There are very few books of any kind on the experience MCS. In order for people with chemical sensitivities to get their needs met – safe (chemical free) housing, doctors who understand their condition, fragrance free policies in public buildings for increased accessibility – public awareness of this condition needs to be raised. This book shows the of living with MCS, and how it impacts one’s life. It demonstrates the desperate need for safe, chemical free housing that people with chemical sensitivity have. It is a story that needs to be told.

Mostly, though, “Common Scents” describes the self-knowledge a young woman finds as she travels the country struggling to live in a world that doesn’t quite fit. The story will resonate with a wide audience. First and foremost, it is aimed at people who want to know more about what it is like to live with Asperger’s. The incidence of autism spectrum disorders, which includes Asperger’s and autism among others, is now at 1 in 110 births. That’s a lot of people – and a lot of parents, spouses, and friends wanting to better understand their loved one. People with autism spectrum disorders will see themselves in this book and better understand themselves as a result.

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OPRAHJESS: Kate, you were diagnosed with Asperger’s as an adult, but you have said that you always knew you were different. How did you feel about your differences growing up and did the knowledge that there was a name for your particular set of challenges change your outlook at all?

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KATE: I always knew something was wrong as I always felt different from others. My parents and counselors said that I was just “quirky” and a late bloomer. I always felt my mind worked differently than others. In fact, I’d make lists upon lists sometimes about everything that set me apart from others, wondering if I’d figure out why. So at that time, I didn’t like that I was so different from others.

Now that I am diagnosed and have found a large AS community both online and offline, I feel more positive about my differences. I know why I have them and how to work around them. I think that it is very important for those with AS to meet others with AS, as it helps with self-image, self-esteem and general friendship quite a bit. Sometimes I wish my mind were more like others, so that I could connect with people more easily; but I try to focus on the good things about having AS.

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OPRAHJESS: I would imagine that there must have been a profound sense of relief – or at the very least validation – for you in the Asperger’s diagnosis after all of those years. And then to realize that you weren’t alone? It must have been life-changing to have found a community of people who had lived through similar experiences.

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KATE: Yes, it was an amazing thing for me. The first time I ever went to a meeting with other Asperger’s people, I just felt like it was an enormous breath of fresh air. I didn’t feel pressured; I felt accepted. Everyone wanted to talk to me – and I wanted to talk to them! Our lives and stories were all more or less the same. I could sit with them for hours without feeling uncomfortable. I just felt on the same wavelength as them – which I had never felt with anyone in my life. Gender and age didn’t matter. It gave me an enormous feeling of self-acceptance and confidence.
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OPRAHJESS: Kate, I think that’s such an important message. A lot of parents of children on the Autism Spectrum struggle with whether or not to talk openly with their children about their diagnoses. There’s a great deal of fear around stigmatizing the child with a label. But I find that when I talk to adults on the Spectrum, the refrain is the same time and time again – “I wish I had known that there was a reason for – and a name for – my differences.”
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And then, in addition to the understanding of your own differences, there’s the unbelievably powerful gift of finding a community of like-minded people who have lived through similar challenges. I can only imagine how powerful that new-found sense of community must be.
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In a post oops, I mean on a show we did a while back, we talked about reframing the pervasive fear of labeling and I asked, “What if we could bring these kids TOGETHER? What if, instead of labeling them per se, we are giving them a tool with which they can identify themselves and EACH OTHER? What if the label is a gateway to the monumental understanding that these kids are NOT alone? What if this group – this incredible group of people – this group that can so easily feel so desperately isolated from their peers – what if they found out that their differences, in and of themselves, are not so damn different after all?”
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It sounds like you lived that moment of discovery, even if it was delayed.
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KATE: I firmly believe that kids with AS should be told in age appropriate ways about their AS as young as the parents think they can handle it. You don’t have to use a label when they’re really young, but teach about diversity, how everyone is different, and how that’s okay. And when they get into perhaps first or second grade, it might be a good idea to be more specific; because sooner or later, they’re going to realize they’re different, and they’re going to want to know why – even if they don’t tell you this directly. The last thing you want is for them to blame themselves for their differences.
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OPRAHJESS: That really is a powerful message, Kate. A couple of years back, I met an amazing man named Stephen Shore. He is one of very few adults that I’ve come across who knew about his Autism from the very beginning. I will never forget hearing him say that he was so grateful that his parents had used the word Autism around him for as long as he could remember because, in his words, “It meant, ‘you’re not strange or stupid or weird, it’s just a neurological thing’.” It’s so valuable for parents to be able to hear from folks like you and Stephen who have grown up with Autism -both with and without the label. Thank you so much for sharing your experiences.
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Speaking of sharing experiences, let’s get back to the book! Can you tell us what prompted you to write your story?
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KATE: I spent two years of my life traveling from city to city, always wondering where I would live next and how long the current situation would last. During those two years, my only goal, my most fervent desire, was to find stable housing. Two years where I could be focused on nothing but the day-to-day mechanisms of survival. You don’t forget experiences like that very easily. When I finally did find a stable place, the change in me was remarkable. I finally was able to relax and think about my past in a more rational and objective, instead of emotional, way. And I realized I had one hell of a story to tell. I realized I had lived in enough cities to give each city a chapter and make a book out of it, something I’d always wanted to do.

Once I realized this, the book started to write itself in my head, and I knew I had to try to get it down on paper. The process was very healing and cathartic to me; I needed to be able to tell this story to be able to move on…and to even really believe it had happened in the first place!

Sometimes I look back and say, “Did I really do that?” But it makes me a stronger person to realize that yes, I did, and it gave me perspective on myself and the world I never would have dreamed of before.

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OPRAHJESS: It is an incredible story. Who do you most want to read it? And what do you hope they take away from it?

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KATE: Well, there is no one audience I am aiming for as I think so many people can read it and take different things from it. But I am told by people who have read it that it gave them great insights into my mind, and to Asperger’s, and helped them understand how an Asperger’s mind might work. So maybe an audience of people who want to learn more about people with AS.

These comments are particularly meaningful to me because my goal is to let other people see into my mind. All my life, I’ve wanted people to understand how I think and how I see the world, because it has been so incredibly frustrating to realize that no one saw the world quite like I did. It took me years to figure out ways to handle the intense emotions that came with realizing I was so different from everyone else, and realizing that I felt I couldn’t communicate who I was to other people. I think that is the primary reason I love writing so much; it gives me a way to express myself. People tend to “get it” when they read my writing, and that is a lifeline for me.

What do I want people to take away with them? In this book, I tried to convey the incredible ups and downs, the emotional highs and lows of having so many challenges, both social and physical, while still conveying the sense of joy I felt over little things in life. I might have been moving from city to city and in a crisis mode all the time; I might have felt isolated and disconnected from people far more than I would have liked, constantly struggling to make connections; I might have had a life that others would deem more limited than they could possibly imagine, but I found ways to enjoy it. I never let my limitations limit me.

Whether it was the sublime pleasure of a croissant in a bakery in Montana, the beauty of the ocean on the coast of Oregon, or the dark humor of finding myself a minority in a town quite unlike anything I was used to in upstate New York, I felt it with all of my senses. And I was forever trying to turn it around so it would be funny, so it would override all the negative things. I made the little things count.

So I suppose the message would be, like I said, “Don’t let your limitations limit you. Neither yours, or your child’s.” For parents of ASD kids, I’d say, “You know what your child is capable of – and it’s good enough. Find ways to make it work for you – and for them. Take delight in the small steps of progress rather than mourning what is not. It’s about attitude, hard as it can be sometimes.”

***

OK, I have to take a moment here. Since this wasn’t an actual, live interview (because despite my frequent fantasies to the contrary where I’m hanging out with Gayle, getting our nails done together and dishing about Steadman’s mustache, I’m sadly NOT actually Oprah) there was no real opportunity to follow-up or comment on what Kate had written. But I need to take the opportunity to comment on it now. So ~ let’s go back to me rockin the PERFECT make-up and GAW-JUS hair on my PERFECT couch with my legs folded ever so flatteringly so that one Christian Louboutin shoe is folded delicately over the other just long enough for one of those really earnest looks directly into the camera where you know something important is happening and that I’m talking to YOU.

“Take delight in the small steps of progress rather than mourning what is not.”

I think we can all agree that we just shared an ‘Aha! Moment’, no?

OK, moving on ..

***

OPRAHJESS: So, Kate, why did you decided to self-publish?

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KATE: Mostly because, in typical Aspie fashion, the process of publishing overwhelmed me. I wanted to start with something manageable. So I self-published. I also didn’t want to wait eighteen months to get the book published; I wanted it out there now, in people’s hands. I am still open to traditional publishing, but I wanted to start with this and see if I could make a go with it.

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OPRAHJESS: Kate, thank you so much for being here today. (Looking into the camera with that patented hypnotic, ‘Resistance is futile so you better have your credit card handy because you’re going to immediately go out and buy the next thing I say’ look -) Kate’s book, Common Scents: Adventures in Autism and Chemical Sensitivity is available for purchase on her website at http://kategoldfield.webs.com. Use coupon BEACHREAD305, for a 15% off until August 15, and free shipping all summer.

Can’t get enough of Kate? Find her on her primary blog, Aspie from Maine, where she welcomes your questions or comments. She would love to hear from you, so don’t be shy!

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Note from my non-existent legal team: I have not yet read Kate’s book nor do I endorse its contents explicitly or implicitly or even um, polioplicitly (no that’s not a word, but if I can pretend to be Oprah then I can make up words). This interview is intended to be informational rather than promotional. I did not and will not receive payment in any way shape nor form from Kate nor do I benefit in any way from the sale of her book. You get the idea.

Additionally, I do not intend to do this type of thing in the future. It is simply not feasible. So – PLEASE, PLEASE, PLEASE DO NOT WRITE TO ME WITH SOLICITATIONS. (I’m begging here; my inbox will break under the pressure, seriously.) However, do feel free to leave links to your books or whatever you’d like to share with readers in the comments here or on Diary’s Facebook page (see link in sidebar).

Thank you!



19 thoughts on “listen, i never said i was oprah

  1. i haven’t read an AS book in so long, but Kate sounds wonderful…maybe this is the book I should go with! funny, i’ve been thinking about that a lot lately, how long it’s been since i’ve attempted an AS book, and now this post happens. and kate has a great perspective it sounds like, so thanks for this post jess. i mean oprahjess.

    opress? no, no, that doesn’t work.

  2. Down here in Georgia, we would call you Jessroh, cousin to Jethro! And what an experience talking with Kate- (I’m assuming that the talking part actually happened?- That, and your gorgeous legs part!) She does, indeed, have a story to tell. Thank you for sharing it- and her!

    Heck, I’ll take you up on your offer- not from a publicity perspective, but I have learned so much from other’s stories- and I finally found my “voice” a year ago… It’s important to listen- but it’s also important to share.

    http://www.professormother.com and “Children with High Functioning Autism: A Parents’ Guide” available on Amazon. http://www.amazon.com/Children-High-Functioning-Autism-Parents-Guide/dp/1593634021/ref=pd_sim_b_4#_

  3. Oprahjess,
    Sounds like an important read for me..
    And you crack me up, too. Can you post a picture of the shoes because you know the only brand of shoe I know is Dansko!

  4. Hi Kate and Jess,
    Thanks for taking the time to share this very important informaiton. The more we mom’s can read, the better we will be prepared at helping our kiddo’s today and down the road. Kate I wish you nothing but the best and Jess, its good to dream isn’t it:)
    Sheila a grateful mom!!

  5. Hi everyone, I am a bit late to the party here, but I just wanted to thank Jess for taking the effort to put so much work into this interview with me, which I very much enjoyed 🙂

    I would also like to thank all of you for reading it! If you have any questions whatsoever about the book, me, my experiences, or my experiences with AS, feel free to ask me! I’m here all night! 🙂 That is, unless I forget to check back, in which case I can’t be held accountable, lol.

    There are some excerpts of the book on my website if you’d like to sample before you buy. Let me know if you have any trouble with the website.

    Have a good day, all!

  6. Kate –
    Thank you for taking the time to write a book that can help those of us who really do want to know what it’s like to have AS.

    & Jess –
    Thanks for bringing Kate to our attention. 🙂

  7. I wish you luck and great success. Self publishing is a very hard road, because you do not have the support of an editor and the marketing and sales team of a big house. I don’t know what to say but you’ve got your work cut out for you!

    My best advice is to build an online presence and look for places to speak.

    Best wishes
    John

  8. There is a really powerful and active mom community in the Asperger-autism world. Some of those moms commented with me here. Make friends with them. Look at Wrong Planet – it’s the biggest online Asperger community. Write Marc Sirkin at Autism Speaks and suggest your story for an “in my own words piece” for their blog and Facebook page. Go to my JohnElderRobison Facebook page and post a link to your book.

    It’s time to get moving. There is no one but you to make this move. Fur flying, tail streaming in the wind . . . .

  9. Oprahjess – thank you for interviewing and introducing Kate to us. And you *do* have GAW-JUS hair…

    And Kate – thank you for sharing your journey – very insightful, and I’m sure that it was not a simple one.

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