Sarah Kurchak - Author
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ASPartOfMe
Veteran
Joined: 25 Aug 2013
Age: 67
Gender: Male
Posts: 35,912
Location: Long Island, New York
Quote:
Autistic people don’t get to speak for themselves very often.
In this book of linked essays, autistic author Sarah Kurchak speaks up eloquently for herself and for others who share her neurodivergent situation.
But don’t turn to Kurchak if you want weepy sentimentality about what an affliction autism is, or, alternatively, unrealistic claims that autism is the next step in human evolution or mere harmless eccentricity.
Autistic people don’t get to speak for themselves very often.
In this book of linked essays, autistic author Sarah Kurchak speaks up eloquently for herself and for others who share her neurodivergent situation.
But don’t turn to Kurchak if you want weepy sentimentality about what an affliction autism is, or, alternatively, unrealistic claims that autism is the next step in human evolution or mere harmless eccentricity.
Autism is a different experience for every autistic person, and Kurchak takes pains to remind the reader that she speaks only for herself and her unique experience. She refuses to be the voice of autism, but she does want some attention and respect for her voice as a legitimate, if not definitive, one.
She also insists that “autistic” is only one dimension of her multi-faceted identity, and refuses to be reduced to any one of those. Kurchak is a diagnosed autistic person, but she is also an accomplished freelance writer, a professional pillow fighter, a wife, a daughter of the beloved parents she celebrates in her essays, and a brave, fierce spirit.
This engaging book reflects all these identities, and more.
Kurchak sets her tone with her irreverent title, and never looks back as she tackles sex, marriage, social anxiety, old TV shows, music journalism and vaccine debates, to name only a few of the many topics she covers in this briskly written book.
The author, who grew up in small town Ontario and graduated from the Humber School for Writers, received her autism diagnosis well into her 20s, although she had suspected for years that autism might explain many of the difficulties she had with sensory overload, eye contact and repetitive movements.
Kurchak is profane, smart, irreverent, honest and brave as she teaches us important lessons, and all these qualities make for an enjoyable, albeit often challenging read.
Her comments on vaccination debates and autism alone are worth the price of admission. Highly recommended.
_________________
Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity
“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman
ASPartOfMe
Veteran
Joined: 25 Aug 2013
Age: 67
Gender: Male
Posts: 35,912
Location: Long Island, New York
Quote:
For all the groups that define themselves as advocates for the autistic community, there’s one voice that’s noticeably quiet: the one of autistics themselves.
Sarah Kurchak is helping correct that. Kurchak was diagnosed with autism at 27. A music and film journalist by trade, she did what she does best with information: she wrote about it, along with the many damaging misconceptions neurotypicals have of autistic individuals and the absurdity of linking vaccines to the condition.
Her first book, I Overcame My Autism and All I Got Was this Lousy Anxiety Disorder, tackles these and other pressing issues. Kurchak frames it as a 15-step “program”. The gist is that it’s tailored to her (the first step is “Be born to Jane and Dan Kurchak”). Also, the plan doesn’t actually work because autism isn’t something you “solve” or “heal”.
Sarah uses her experiences to make larger points about the diversity of autistic people, along with the coping and masking, the illusion of “high-functioning” autistics and the inadequacies of behavioural therapy. Her stories range from hilarious (her days as professional pillow fighter) to heartbreaking (the merciless bullying she endured in school) to idiosyncratic (her fascination with The Man from U.N.C.L.E — the series, not the movie).
Full disclosure: Sarah Kurchak is a good friend. We met at the Toronto Film Critics fiesta the night before TIFF started in 2013. We were both terrible at mingling, so rather than continue awkwardly casing the joint we started talking. Since then, we’ve crashed multiple parties and been blocked on Twitter by William Shatner. My friendship with Sarah has been one of my life’s most enriching experiences and I believe you can get a sense of how great she is by reading her book.
I spoke with Sarah recently for Planet S. This interview has been lightly edited for clarity.
You’ve given a lot of interviews to promote your book. What do your interviewers get most hung up on?
There are two things. Anytime people want to add levity to the conversation, they bring up pillow fighting, which I should have guessed. There’s also a strong interest in romance and relationships. Some of that comes from nervous parents and family members, who want to believe that’s possible.
Your book doesn’t over-rely on anecdotes like most autobiographies but uses them as departure points. When did you pick this approach?
Very early. I never thought I was interesting enough to merit a memoir, but it’s such a rare opportunity I was given I couldn’t just focus on myself. My goal was that anyone who wanted a bit of voyeurism wouldn’t be left with just one story, but nudged in different directions, and someone with slightly less voyeuristic interests would have other material to chew on. And autistic people — that audience is extremely important to me — wouldn’t be stuck with the story of just one white girl.
Have you encountered people taking the title of your book (I Overcame My Autism and All I Got Was this Lousy Anxiety Disorder) at face value?
Yes. The publisher even designed a mock-up of the cover with ironic quotations around “overcame”. I decided to go as is and deal with the fallout later, to keep things in line with my voice a bit more. The one thing I should have taken into consideration is that when you move beyond disability social circles, the word “overcome” doesn’t have the same connotation. We use the word among ourselves ironically because we’re so over the idea of inspiration-porn. I didn’t realize how little people outside our bubble had caught on.
What did you learn?
The one thing I’m fixated on is that the movie my parents were watching when my mom’s water broke was Zardoz. I was legit really into Zardoz in my teens and I don’t know how they let me coast through that phase without properly explaining my origin story. I feel I’d discussed everything with my parents and yet there was this minor, but still life-changing revelation that came at the very last minute.
POOP AND LOVE
One of Sarah’s concerns for the autistic community during the pandemic is food scarcity. “Often, people with limited diets don’t always have access to the few foods they can have, and can’t afford to stockpile,” she says.
Another is special needs not being addressed.
“Even though everyone is suffering, there are unique ways autistic people are struggling. A young autistic woman couldn’t find the one hand soap she could handle without triggering sensory issues. She was desperate since she needed to wash her hands more often.”
I know you’re ambivalent about being a voice for the autistic community. Have you made peace with that?
Not really. That disclaimer in the front of the book (Sarah wishes to be a voice in a greater conversation, not the voice) is about half as long as the one I wanted to write. I don’t think I’m necessarily a good voice or know if I’m in a good enough headspace, with enough executive function to properly source other autistic voices.
What was your rule on disclosing personal stories?
My only hard line was the poop one. It was symbolic. There have been so many demands from autistic parents to explain my toilet training to prove I was not like their child, I had to keep a steady line.
The one thing that surprised me while writing was Aaron [Sarah’s husband] was like, “write anything you want” and I found that I didn’t want to get into details of our relationship. Not that I was ashamed or I wanted to keep it private, but I didn’t feel like leaving it open to the speculation of people who didn’t know me. No, screw you. That part is mine.
END THE BLOODLETTING
Sarah only signed with a literary agent two years ago. So the book is a quick turnaround in publishing terms.
“I’m a laboured writer, so just hitting the number of words I needed each day was hard,” says Kurchak. “Also, I was really blasé about how easy it was going to be to recount childhood trauma. The intensity was one thing, but the pace I had to churn it out burned me out.”
This is not to say Sarah doesn’t have other things she wants to write. First is the autistic sex comedy she hints at in the book. She would also like to write about fitness, a field where she tried to find some economic stability. “The industry has the capacity to help people, yet it’s wasted on making them feel worse to extract more money,” she says.
“Whatever I do next, it needs to have fewer bloodletting personal anecdotes of autistic nature.”
Do you feel you achieved everything you set up to accomplish writing this book?
Not even close. A part of me always thought this would be my only book, but as I watch the entire publishing industry die, I don’t think I would feel satisfied if this is the only statement I get to make. Maybe I accomplished 10 per cent. If autistic people see value in it that would be amazing, but I would always focus on what else I could’ve done for me and for my people.
As a neurotypical person, I’ve a hard time imagining what the remaining 90 per cent would be.
If I had more time, I could’ve interviewed autistic people instead of using sources, but that’s another book entirely. There’s such a chasm between what has been said about autism and what needs to be said. Granted, one person can’t bridge that and also shouldn’t, given that there’s too many of us with diverse backgrounds and identities. But it weighs on me that anything I could have produced is a drop in a bucket.
You talk extensively about your closeness with your parents. How difficult have the last couple months of quarantine been for you?
I’m struggling in all fronts. I’m a bit helped by having really strong autistic inertia, so on one level, I’m like, it has always been this way. I’m still texting my mom every day and sending my dad cat photos. But anytime I look at the bigger picture and think of how long it may be before I see them, I spiral pretty quickly and I want my mommy.
Sarah Kurchak is helping correct that. Kurchak was diagnosed with autism at 27. A music and film journalist by trade, she did what she does best with information: she wrote about it, along with the many damaging misconceptions neurotypicals have of autistic individuals and the absurdity of linking vaccines to the condition.
Her first book, I Overcame My Autism and All I Got Was this Lousy Anxiety Disorder, tackles these and other pressing issues. Kurchak frames it as a 15-step “program”. The gist is that it’s tailored to her (the first step is “Be born to Jane and Dan Kurchak”). Also, the plan doesn’t actually work because autism isn’t something you “solve” or “heal”.
Sarah uses her experiences to make larger points about the diversity of autistic people, along with the coping and masking, the illusion of “high-functioning” autistics and the inadequacies of behavioural therapy. Her stories range from hilarious (her days as professional pillow fighter) to heartbreaking (the merciless bullying she endured in school) to idiosyncratic (her fascination with The Man from U.N.C.L.E — the series, not the movie).
Full disclosure: Sarah Kurchak is a good friend. We met at the Toronto Film Critics fiesta the night before TIFF started in 2013. We were both terrible at mingling, so rather than continue awkwardly casing the joint we started talking. Since then, we’ve crashed multiple parties and been blocked on Twitter by William Shatner. My friendship with Sarah has been one of my life’s most enriching experiences and I believe you can get a sense of how great she is by reading her book.
I spoke with Sarah recently for Planet S. This interview has been lightly edited for clarity.
You’ve given a lot of interviews to promote your book. What do your interviewers get most hung up on?
There are two things. Anytime people want to add levity to the conversation, they bring up pillow fighting, which I should have guessed. There’s also a strong interest in romance and relationships. Some of that comes from nervous parents and family members, who want to believe that’s possible.
Your book doesn’t over-rely on anecdotes like most autobiographies but uses them as departure points. When did you pick this approach?
Very early. I never thought I was interesting enough to merit a memoir, but it’s such a rare opportunity I was given I couldn’t just focus on myself. My goal was that anyone who wanted a bit of voyeurism wouldn’t be left with just one story, but nudged in different directions, and someone with slightly less voyeuristic interests would have other material to chew on. And autistic people — that audience is extremely important to me — wouldn’t be stuck with the story of just one white girl.
Have you encountered people taking the title of your book (I Overcame My Autism and All I Got Was this Lousy Anxiety Disorder) at face value?
Yes. The publisher even designed a mock-up of the cover with ironic quotations around “overcame”. I decided to go as is and deal with the fallout later, to keep things in line with my voice a bit more. The one thing I should have taken into consideration is that when you move beyond disability social circles, the word “overcome” doesn’t have the same connotation. We use the word among ourselves ironically because we’re so over the idea of inspiration-porn. I didn’t realize how little people outside our bubble had caught on.
What did you learn?
The one thing I’m fixated on is that the movie my parents were watching when my mom’s water broke was Zardoz. I was legit really into Zardoz in my teens and I don’t know how they let me coast through that phase without properly explaining my origin story. I feel I’d discussed everything with my parents and yet there was this minor, but still life-changing revelation that came at the very last minute.
POOP AND LOVE
One of Sarah’s concerns for the autistic community during the pandemic is food scarcity. “Often, people with limited diets don’t always have access to the few foods they can have, and can’t afford to stockpile,” she says.
Another is special needs not being addressed.
“Even though everyone is suffering, there are unique ways autistic people are struggling. A young autistic woman couldn’t find the one hand soap she could handle without triggering sensory issues. She was desperate since she needed to wash her hands more often.”
I know you’re ambivalent about being a voice for the autistic community. Have you made peace with that?
Not really. That disclaimer in the front of the book (Sarah wishes to be a voice in a greater conversation, not the voice) is about half as long as the one I wanted to write. I don’t think I’m necessarily a good voice or know if I’m in a good enough headspace, with enough executive function to properly source other autistic voices.
What was your rule on disclosing personal stories?
My only hard line was the poop one. It was symbolic. There have been so many demands from autistic parents to explain my toilet training to prove I was not like their child, I had to keep a steady line.
The one thing that surprised me while writing was Aaron [Sarah’s husband] was like, “write anything you want” and I found that I didn’t want to get into details of our relationship. Not that I was ashamed or I wanted to keep it private, but I didn’t feel like leaving it open to the speculation of people who didn’t know me. No, screw you. That part is mine.
END THE BLOODLETTING
Sarah only signed with a literary agent two years ago. So the book is a quick turnaround in publishing terms.
“I’m a laboured writer, so just hitting the number of words I needed each day was hard,” says Kurchak. “Also, I was really blasé about how easy it was going to be to recount childhood trauma. The intensity was one thing, but the pace I had to churn it out burned me out.”
This is not to say Sarah doesn’t have other things she wants to write. First is the autistic sex comedy she hints at in the book. She would also like to write about fitness, a field where she tried to find some economic stability. “The industry has the capacity to help people, yet it’s wasted on making them feel worse to extract more money,” she says.
“Whatever I do next, it needs to have fewer bloodletting personal anecdotes of autistic nature.”
Do you feel you achieved everything you set up to accomplish writing this book?
Not even close. A part of me always thought this would be my only book, but as I watch the entire publishing industry die, I don’t think I would feel satisfied if this is the only statement I get to make. Maybe I accomplished 10 per cent. If autistic people see value in it that would be amazing, but I would always focus on what else I could’ve done for me and for my people.
As a neurotypical person, I’ve a hard time imagining what the remaining 90 per cent would be.
If I had more time, I could’ve interviewed autistic people instead of using sources, but that’s another book entirely. There’s such a chasm between what has been said about autism and what needs to be said. Granted, one person can’t bridge that and also shouldn’t, given that there’s too many of us with diverse backgrounds and identities. But it weighs on me that anything I could have produced is a drop in a bucket.
You talk extensively about your closeness with your parents. How difficult have the last couple months of quarantine been for you?
I’m struggling in all fronts. I’m a bit helped by having really strong autistic inertia, so on one level, I’m like, it has always been this way. I’m still texting my mom every day and sending my dad cat photos. But anytime I look at the bigger picture and think of how long it may be before I see them, I spiral pretty quickly and I want my mommy.
_________________
Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity
“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman
ASPartOfMe
Veteran
Joined: 25 Aug 2013
Age: 67
Gender: Male
Posts: 35,912
Location: Long Island, New York
Quote:
Journalist Sarah Kurchak begins her memoir, “I Overcame My Autism and All I Got Was This Lousy Anxiety Disorder,” with a disclaimer: “I do not speak for all autistic people. I will not try to. I do not want to.” With that out of the way, what follows is a superb ‘autiebiography’ — an autobiography written by an autistic person — which, though it may not reflect the experiences of everyone on the spectrum, is sure to resonate with many, myself included.
There is also much in this book for autism researchers — Kurchak extensively cites individual studies, as well as Spectrum. If you have ever wondered how autistic people think about your work and how we use it to understand ourselves, Kurchak provides an enlightening glimpse.
Kurchak, who was not diagnosed with autism until age 27, discusses that cost at length. She notes that autism diagnosis, including her own, is very much ‘fail first’ — people may struggle for years before a diagnosis helps them to understand themselves. Perhaps the most remarkable thing about her memoir is that she is adamant that she is neither an exception nor exceptional. She refuses to be an object of pity.
There is also much in this book for autism researchers — Kurchak extensively cites individual studies, as well as Spectrum. If you have ever wondered how autistic people think about your work and how we use it to understand ourselves, Kurchak provides an enlightening glimpse.
Kurchak, who was not diagnosed with autism until age 27, discusses that cost at length. She notes that autism diagnosis, including her own, is very much ‘fail first’ — people may struggle for years before a diagnosis helps them to understand themselves. Perhaps the most remarkable thing about her memoir is that she is adamant that she is neither an exception nor exceptional. She refuses to be an object of pity.
_________________
Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity
“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman
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