Another controversial book by an Autism Mom
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ASPartOfMe
Veteran
Joined: 25 Aug 2013
Age: 67
Gender: Male
Posts: 36,556
Location: Long Island, New York
15 Mar 2018, 11:31 am
Bio of Author as per her webpage
Whitney Ellenby is a former US Department of Justice, Disability Rights attorney and proud parent of a son with Autism. She is the founder of “Autism Ambassadors,” a charitable venture which provides recreational events for over 600 families in Maryland and surrounding areas, including a Sensory-Friendly showing of the world-famous “Gazillion Bubbles Show.” She and her “Ambassador events” have been featured in local t.v. news, the Washington Post, the Bethesda Gazette and Bethesda Magazine.
Autism Uncensored: Pulling Back the Curtain - Amazon webpage
Quote:
"And when in the grips of a public tantrum, amidst the horror and humiliation of him shrieking and splayed out on the floor while strangers recoiled in shock, my mind lurched towards an inescapable truth--that I want out from this nightmare. I want out from this child."
So begins the turbulent ride of one parent's decision, crafted in despair and desperation, to abandon traditional interventions for her autistic son in favor of a "hands on" approach of repeatedly exposing her son to real-world settings. Autism Uncensored is an unrestricted portal into the mind of someone who had no intention of sacrificing her career or life for Autism, unaware of the many ways it would irreversibly redefine both. As she clarifies at the outset, "this is not the story of a miraculous breakthrough or recovery," Zack is still very much autistic and always will be. It is instead the true, real-time account of her decision to allow Zack to indulge in the very behaviors that formal therapies sought to extinguish, to disclose Zack's diagnosis in public settings, and to repeatedly expose him to real-world situations and override his tantrums regardless of public ridicule or scorn.
Autism Uncensored goes where no other book dares--revealing the private disgrace and self-blame about having a "defective" child; the near disintegration of marriage; the failure of the traditional behavioral interventions; and the mercenary way in which service providers prey on parents' desperation for a cure. It is a personal manifesto about how a socially integrated life is attainable regardless of whether a child overcomes the major limitations of Autism, sparking a new conversation which goes beyond simply accepting persons with Autism for who they are, but considers pushing them beyond their comfort zones to learn who they are capable of becoming. An unstoppable ride with jolting twists and turns, Autism Uncensored will leave you
So begins the turbulent ride of one parent's decision, crafted in despair and desperation, to abandon traditional interventions for her autistic son in favor of a "hands on" approach of repeatedly exposing her son to real-world settings. Autism Uncensored is an unrestricted portal into the mind of someone who had no intention of sacrificing her career or life for Autism, unaware of the many ways it would irreversibly redefine both. As she clarifies at the outset, "this is not the story of a miraculous breakthrough or recovery," Zack is still very much autistic and always will be. It is instead the true, real-time account of her decision to allow Zack to indulge in the very behaviors that formal therapies sought to extinguish, to disclose Zack's diagnosis in public settings, and to repeatedly expose him to real-world situations and override his tantrums regardless of public ridicule or scorn.
Autism Uncensored goes where no other book dares--revealing the private disgrace and self-blame about having a "defective" child; the near disintegration of marriage; the failure of the traditional behavioral interventions; and the mercenary way in which service providers prey on parents' desperation for a cure. It is a personal manifesto about how a socially integrated life is attainable regardless of whether a child overcomes the major limitations of Autism, sparking a new conversation which goes beyond simply accepting persons with Autism for who they are, but considers pushing them beyond their comfort zones to learn who they are capable of becoming. An unstoppable ride with jolting twists and turns, Autism Uncensored will leave you
An excerpt from the book was published in the Washington Post and raised the ire of some ND advocates. I also started a thread about this article but I can not find it at the moment.
Bystanders were horrified. But my son has autism, and I was desperate.
Quote:
What I did to help my 5-year-old autistic son overcome his intense fear of indoor spaces might not have been right or even safe. Doctors didn’t recommend it. The people who witnessed it were appalled, understandably. I don’t suggest this for others.
I could have been more patient with conventional methods, but I wasn’t. I am not certified in restraining children, though doctors say anyone attempting what I did should be. They would also recommend a much slower approach.
I am writing this because I hope to educate people about the burden families face when their autistic children have tantrums in public spaces, so next time you witness such a struggle you don’t immediately resort to blaming the parents. I’m also reaching out to fellow parents in pain to remind them to cast off shame, because I believe nothing is more important than getting your autistic children out into the world.
It was a desperate time. Nothing else had worked for Zack — flashcards, photos, play therapy. gradual exposure to feared indoor spaces. That is how, very much against his will, I ended up physically dragging Zack into Verizon Center (now Capital One Arena) one day 10 years ago to see his favorite character, Elmo, perform as part of a “Sesame Street Live!” show.
There is nothing anyone could have said that would have convinced me my son was anything other than precious and worthy of the extreme measures I intended to take to save him from a life entrapped by autistic phobias.
My mind-set that day: If I can get him through this without either of us getting physically hurt, his fear of this place will be behind him for good. He will reset his association with this arena, and it will no longer be frightening. I believe this deeply, but getting him over the hurdle is terrifying.
We enter Verizon Center, and the moment the exterior door closes behind us, Zack reels back and plunges toward it, trying frantically to get back outside. At 50 pounds, his furious strength is a troubling match for mine. He is a thoroughbred of resistance.
My usually buoyant child is slamming his fists and clawing at the metal door’s push bar. I quickly seize him by the shoulders and pry his fingers from the bar as he jerks his head back in a sudden motion. His skull smashes into my chin, and I taste the metallic taint of my own blood.
I give up trying to pry his fingers away, wrap both arms tightly around his torso and yank him back fiercely. We both tumble to the floor. Zack momentarily escapes my grip and scrambles back toward the door, but I leap on top of him, pinning his entire body flat to the ground. We are still in the vestibule.
can hear voices around us.
“Hey, lady! Your kid obviously doesn’t want to go to the show!”
An icy shock sprints down my back, and I reflexively arch and look around wildly. Someone has just thrown their soda at me.
No, I’m not giving up.
Suddenly, I feel an imaginary cloak descend and slowly envelop me. These are the moments I’ve been dreading, but also building toward, and I don this invisible armor, now impervious to ridicule because I don’t care what anyone thinks. My singular focus is getting Zack where he needs to be: inside the main area, looking at Elmo. The show has already begun inside, and I know Elmo is on the stage.
Okay, get in his head now, talk back to his thoughts. Keep it simple.
“Zack, you are doing it! I know you’re afraid, but all you have to do is stay here, you’re already doing it, you’ve already won. Just stay and watch, sit and watch, that’s it. You did it. You’re doing it. You did it!” A simple and repetitive mantra to penetrate the panic and break through the force field.
In a now recovered and controlled voice, I loudly announce, “My son has autism and he’s terrified. I’m working with him to get his fears under control.”
A manager strides toward us, summoned to calm the explosive scene.
“Miss, I’m afraid this is too disruptive to the other patrons to let this continue, you’ll have to leave.” No response. Repeat with emphasis. “Miss, you are creating a public disturbance, and I need to escort you and your child out of the auditorium right now.”
“No,” I respond calmly without looking up. “I’m not going anywhere. I’m a paying customer too, and I have a right to be here, and so does my autistic son.”
Suddenly, from the far reaches of my mind, the legal jargon jettisons to the surface. What was that ADA language about the right of disabled people to access public facilities? That they have a right not be discriminated against because of their disability, a right to reasonable accommodations to access public venues. My son is not legally required to enter the auditorium quietly. He’s allowed to enter on his own disabled terms. I am his reasonable accommodation.
I quickly gesture with my hand to the woman guarding the entrance to please pull back that curtain so my son can finally see inside and glimpse the purpose behind the long, bitter altercation. I need her to act quickly. She tries a few times to reach my son with chirpy words that fall on deaf ears.
“LADY, he’s got AUTISM, please just pull back the curtain!” I hiss.
She wordlessly pulls back the plush red velvet in a single swoop to reveal a bright-red, singing caricature on a large stage, clearly visible even from our long distance. I quickly point Zack in his direction and exclaim, “There’s ELMO! Elmo is singing! Look, Zack, it’s Elmo!”
As I gaze around the auditorium, Zack is indistinguishable from his peers. In these precious moments I can savor the reality that Zack has succeeded in the greatest challenge of his life — overriding his intense phobia of indoor spaces — long enough to access something beloved.
It took 36 minutes and 45 seconds. And, yes, it was worth it.
In the past, when I’d retreated home with him during a tantrum, I was unintentionally reinforcing his phobia. But the doctor made it clear to me he would not recommend this method for any child unless all other methods had been exhausted, and the child was able to handle it without causing harm to himself or others.
I could have been more patient with conventional methods, but I wasn’t. I am not certified in restraining children, though doctors say anyone attempting what I did should be. They would also recommend a much slower approach.
I am writing this because I hope to educate people about the burden families face when their autistic children have tantrums in public spaces, so next time you witness such a struggle you don’t immediately resort to blaming the parents. I’m also reaching out to fellow parents in pain to remind them to cast off shame, because I believe nothing is more important than getting your autistic children out into the world.
It was a desperate time. Nothing else had worked for Zack — flashcards, photos, play therapy. gradual exposure to feared indoor spaces. That is how, very much against his will, I ended up physically dragging Zack into Verizon Center (now Capital One Arena) one day 10 years ago to see his favorite character, Elmo, perform as part of a “Sesame Street Live!” show.
There is nothing anyone could have said that would have convinced me my son was anything other than precious and worthy of the extreme measures I intended to take to save him from a life entrapped by autistic phobias.
My mind-set that day: If I can get him through this without either of us getting physically hurt, his fear of this place will be behind him for good. He will reset his association with this arena, and it will no longer be frightening. I believe this deeply, but getting him over the hurdle is terrifying.
We enter Verizon Center, and the moment the exterior door closes behind us, Zack reels back and plunges toward it, trying frantically to get back outside. At 50 pounds, his furious strength is a troubling match for mine. He is a thoroughbred of resistance.
My usually buoyant child is slamming his fists and clawing at the metal door’s push bar. I quickly seize him by the shoulders and pry his fingers from the bar as he jerks his head back in a sudden motion. His skull smashes into my chin, and I taste the metallic taint of my own blood.
I give up trying to pry his fingers away, wrap both arms tightly around his torso and yank him back fiercely. We both tumble to the floor. Zack momentarily escapes my grip and scrambles back toward the door, but I leap on top of him, pinning his entire body flat to the ground. We are still in the vestibule.
can hear voices around us.
“Hey, lady! Your kid obviously doesn’t want to go to the show!”
An icy shock sprints down my back, and I reflexively arch and look around wildly. Someone has just thrown their soda at me.
No, I’m not giving up.
Suddenly, I feel an imaginary cloak descend and slowly envelop me. These are the moments I’ve been dreading, but also building toward, and I don this invisible armor, now impervious to ridicule because I don’t care what anyone thinks. My singular focus is getting Zack where he needs to be: inside the main area, looking at Elmo. The show has already begun inside, and I know Elmo is on the stage.
Okay, get in his head now, talk back to his thoughts. Keep it simple.
“Zack, you are doing it! I know you’re afraid, but all you have to do is stay here, you’re already doing it, you’ve already won. Just stay and watch, sit and watch, that’s it. You did it. You’re doing it. You did it!” A simple and repetitive mantra to penetrate the panic and break through the force field.
In a now recovered and controlled voice, I loudly announce, “My son has autism and he’s terrified. I’m working with him to get his fears under control.”
A manager strides toward us, summoned to calm the explosive scene.
“Miss, I’m afraid this is too disruptive to the other patrons to let this continue, you’ll have to leave.” No response. Repeat with emphasis. “Miss, you are creating a public disturbance, and I need to escort you and your child out of the auditorium right now.”
“No,” I respond calmly without looking up. “I’m not going anywhere. I’m a paying customer too, and I have a right to be here, and so does my autistic son.”
Suddenly, from the far reaches of my mind, the legal jargon jettisons to the surface. What was that ADA language about the right of disabled people to access public facilities? That they have a right not be discriminated against because of their disability, a right to reasonable accommodations to access public venues. My son is not legally required to enter the auditorium quietly. He’s allowed to enter on his own disabled terms. I am his reasonable accommodation.
I quickly gesture with my hand to the woman guarding the entrance to please pull back that curtain so my son can finally see inside and glimpse the purpose behind the long, bitter altercation. I need her to act quickly. She tries a few times to reach my son with chirpy words that fall on deaf ears.
“LADY, he’s got AUTISM, please just pull back the curtain!” I hiss.
She wordlessly pulls back the plush red velvet in a single swoop to reveal a bright-red, singing caricature on a large stage, clearly visible even from our long distance. I quickly point Zack in his direction and exclaim, “There’s ELMO! Elmo is singing! Look, Zack, it’s Elmo!”
As I gaze around the auditorium, Zack is indistinguishable from his peers. In these precious moments I can savor the reality that Zack has succeeded in the greatest challenge of his life — overriding his intense phobia of indoor spaces — long enough to access something beloved.
It took 36 minutes and 45 seconds. And, yes, it was worth it.
In the past, when I’d retreated home with him during a tantrum, I was unintentionally reinforcing his phobia. But the doctor made it clear to me he would not recommend this method for any child unless all other methods had been exhausted, and the child was able to handle it without causing harm to himself or others.
Then he improved and everything got better etc. etc.
The publisher put out a statement defending the book causing more controversy.
Why Koehler Books Is Publishing Whitney Ellenby’s Autism Uncensored
Quote:
On April 15 Koehler Books will officially publish Whitney Ellenby’s Autism Uncensored: Pulling Back the Curtain. We agreed to publish Ellenby’s book for the same reason any publisher would:
The author had written an excellent book, well crafted and with a strong, logical narrative voice.
The writing was clean and the craft excellent.
The author was writing about her personal experience from a strong advocate position, a position of expertise based on her personal testimony.
The author wrote the book to share her story in the hopes of helping other parents of autistic children who are dealing with extremely difficult issues of control, and who desperately want to give their children the best possible life. Ellenby offers her views and experience dealing with the unorthodox methods she specifically adapted to Zack so he could live a full life.
The author clearly states in the Prologue that she understands that her methods are unorthodox, experimental, and even controversial; that she in no way endorses them for others to follow; that her book is not a prescription. She offers them as part of her own individual narrative, along with her unique perspectives about autism in hope of helping some parents with autistic children, because she has seen how much the methods she has employed with her own son, Zack, have helped him to realize his own civil rights, and live a more complete life.
The author has an excellent following of readers and is well connected in the autism community.
Her marketing and promotional plans were and are excellent. She gets it.
From a publishing perspective, we saw all green lights to get behind Ellenby’s book. Now it would appear, based on the rankings on Amazon and elsewhere, along with pre-orders, that our judgment was correct. Autism Uncensored received two Amazon BEST NEW RELEASE awards in particular categories, and continues to rank in the top 100 for books about the Mentally Disabled.
I also was particularly interested in Ellenby’s book for other professional and personal reasons:
I am bipolar, and have been living with this syndrome for half my life, since I was 30. My first book was Bipolar by Koehler, which was my personal testimony, open and raw, about my life as a bipolar person. The book allowed me to help many BP people and their loved ones, just as Ellenby’s book will help many parents of kids with autism.
I served as the Director of Young Life Capernaum in Hampton Roads for five years, from 2005–2010. God called me into this Christian ministry in part because I have a disability. I was not afraid of anyone, nor did I treat people with disabilities any differently than able-bodied, but rather called them up to the best life they could have, and helped them to not use their disability as an excuse for bad behavior. We took kids out of wheelchairs and let them wrestle! Some folks were appalled because no one had ever done it. But the kids loved it. Now everyone does it.
I continue to be an advocate for people with disabilities. I continue to give talks to local groups ministering to adults with disabilities, including The Chosen. I support Faith Inclusion Network, a ministry that advocates for inclusion of our people across all faith groups. I am involved with the Tidewater Piranhas, a Power Soccer team here in Hampton Roads, and am organizing a fundraiser so that these awesome people with spina bifida, cerebral palsy, MS and many other physically debilitating maladies can be rock stars, on and off the court.
Koehler Books is an advocate for all people, in particular authors who are writing to help the community in some fashion. We have published books that:
• help people with eating disorders
• help people use exercise to overcome nervous disorders
• help people dealing with proper ADHD medication issues
• help people living with ADHD or ADD
• help people use pets as a way to help overcome eating and other disorders
• help people understand the proper use of medical cannabis for pain disorders
• help people with anxiety disorders
• help kids better understand fitness
• help people with bipolar syndrome live fully
• help people quite smoking
• help people eat healthy
• help people overcome addictions
• help people overcome emotional and physical abuse
• help people use dogs to help them live with diabetes
• help the elderly live a more full life
We believe in a Free Press, and believe book publishing comes under that protection. The Constitutional right to Free Speech, as clearly stated in the First Amendment:
“Congress shall make no law respecting an establishment of religion, or prohibiting the free exercise thereof; or abridging the freedom of speech, or of the press; or the right of the people peaceably to assemble, and to petition the government for a redress of grievances.” —First Amendment to the Constitution
We do not cower nor are we beholden to any group or individual who states their opinions about any work that we have published or are about to publish. We welcome their opinions as long as they respect our rights to share the opinions of our authors. We do not consider or respond to any actions, letters or notes demanding that we do not publish any work. Internet bullies, whether autistic or not, do not exist to us, and are put in the trash.
Having said that, I appreciate the rights of people with autism (or anyone for that matter) to voice their opinions. I encourage you to voice your opinions elsewhere, because this publisher is deaf when you ask that any book not be published. That is blatant censorship and will only backfire and raise awareness about this book, thus causing it to sell more copies.
Many of the emails we have received about Ellenby’s book are based solely on the heavily-edited article about her and her book that was published by the Washington Post. Any opinions based on that article are incomplete and, quite frankly, make high-functioning literate people with autism appear to be less than intelligent. If you do not read the entire book, then you are like a person who meets you and decides that all people with autism are just like you. That would be completely untrue.
Zack is not like you. You know who he is. You are smart, so I call upon you to BE SMART. Zack is unable to express himself like you do. He is terrified of close spaces and new places and new people. But he is far from stupid. He communicates, just not as articulately as you. He cannot write much at all, certainly not as amazingly as you can. But if he could, I think he would thank his mom and dad for helping him to live big. He would tell you to open your mind up and consider new things. He would tell you that his mom NEVER ABUSED HIM. That she loves him to the moon and back. He might even tell you to mind your own business, because you have no right to tell him how to live.
I wonder if you truly care about Zack. Do you care about him enough to let him live with the help only his parents can give him? Even if it makes you uncomfortable?
Let me tell you something about people who are bipolar. I am on the high end of the spectrum, like you. I take medication and have a good circle of family and friends who look out for me. I try my best to stay connected to God. I try to help others with BP by advocating and writing.
But there are some BP people who are much worse off then me. Medication has little effect. They are suicidal. They can’t live a full life. All options are closed. Except for one:
Electroconvulsive Therapy (ECT). AKA Electric Shock Therapy.
It is a disgusting and gross solution to me, and perhaps to you too. But I don’t need ECT. I have a choice. Meds work for me. But for thousands who just want to die, they will use it. And it can work for them. It can allow them to live a more normal life.
Zack’s parents were desperate to help him live a more normal life. So they tried something new. It worked, and now this book will offer new hope to many parents who love their children. I know you disagree. That’s okay. You have a right to disagree, but you do not have the right to censor the publication of this book, or threaten my company with any actions. I urge you to be careful. I am not the enemy. I am an advocate and I have hundreds of friends who live with autism. I work with some of them. They rock, just like you.
I challenge you to read the ENTIRE book and THEN state your opinions. They are welcome. Tell the world what you think. Don’t tell the publisher, for goodness sake!
If you really want to state your opinion, then gather your people and put your thoughts down on paper. Write in a constructive way. A way that can improve the world. Write it down and send the manuscript to me. We would consider publishing it if it passes the quality test. I dare you to write your stories down.
God bless you.
The author had written an excellent book, well crafted and with a strong, logical narrative voice.
The writing was clean and the craft excellent.
The author was writing about her personal experience from a strong advocate position, a position of expertise based on her personal testimony.
The author wrote the book to share her story in the hopes of helping other parents of autistic children who are dealing with extremely difficult issues of control, and who desperately want to give their children the best possible life. Ellenby offers her views and experience dealing with the unorthodox methods she specifically adapted to Zack so he could live a full life.
The author clearly states in the Prologue that she understands that her methods are unorthodox, experimental, and even controversial; that she in no way endorses them for others to follow; that her book is not a prescription. She offers them as part of her own individual narrative, along with her unique perspectives about autism in hope of helping some parents with autistic children, because she has seen how much the methods she has employed with her own son, Zack, have helped him to realize his own civil rights, and live a more complete life.
The author has an excellent following of readers and is well connected in the autism community.
Her marketing and promotional plans were and are excellent. She gets it.
From a publishing perspective, we saw all green lights to get behind Ellenby’s book. Now it would appear, based on the rankings on Amazon and elsewhere, along with pre-orders, that our judgment was correct. Autism Uncensored received two Amazon BEST NEW RELEASE awards in particular categories, and continues to rank in the top 100 for books about the Mentally Disabled.
I also was particularly interested in Ellenby’s book for other professional and personal reasons:
I am bipolar, and have been living with this syndrome for half my life, since I was 30. My first book was Bipolar by Koehler, which was my personal testimony, open and raw, about my life as a bipolar person. The book allowed me to help many BP people and their loved ones, just as Ellenby’s book will help many parents of kids with autism.
I served as the Director of Young Life Capernaum in Hampton Roads for five years, from 2005–2010. God called me into this Christian ministry in part because I have a disability. I was not afraid of anyone, nor did I treat people with disabilities any differently than able-bodied, but rather called them up to the best life they could have, and helped them to not use their disability as an excuse for bad behavior. We took kids out of wheelchairs and let them wrestle! Some folks were appalled because no one had ever done it. But the kids loved it. Now everyone does it.
I continue to be an advocate for people with disabilities. I continue to give talks to local groups ministering to adults with disabilities, including The Chosen. I support Faith Inclusion Network, a ministry that advocates for inclusion of our people across all faith groups. I am involved with the Tidewater Piranhas, a Power Soccer team here in Hampton Roads, and am organizing a fundraiser so that these awesome people with spina bifida, cerebral palsy, MS and many other physically debilitating maladies can be rock stars, on and off the court.
Koehler Books is an advocate for all people, in particular authors who are writing to help the community in some fashion. We have published books that:
• help people with eating disorders
• help people use exercise to overcome nervous disorders
• help people dealing with proper ADHD medication issues
• help people living with ADHD or ADD
• help people use pets as a way to help overcome eating and other disorders
• help people understand the proper use of medical cannabis for pain disorders
• help people with anxiety disorders
• help kids better understand fitness
• help people with bipolar syndrome live fully
• help people quite smoking
• help people eat healthy
• help people overcome addictions
• help people overcome emotional and physical abuse
• help people use dogs to help them live with diabetes
• help the elderly live a more full life
We believe in a Free Press, and believe book publishing comes under that protection. The Constitutional right to Free Speech, as clearly stated in the First Amendment:
“Congress shall make no law respecting an establishment of religion, or prohibiting the free exercise thereof; or abridging the freedom of speech, or of the press; or the right of the people peaceably to assemble, and to petition the government for a redress of grievances.” —First Amendment to the Constitution
We do not cower nor are we beholden to any group or individual who states their opinions about any work that we have published or are about to publish. We welcome their opinions as long as they respect our rights to share the opinions of our authors. We do not consider or respond to any actions, letters or notes demanding that we do not publish any work. Internet bullies, whether autistic or not, do not exist to us, and are put in the trash.
Having said that, I appreciate the rights of people with autism (or anyone for that matter) to voice their opinions. I encourage you to voice your opinions elsewhere, because this publisher is deaf when you ask that any book not be published. That is blatant censorship and will only backfire and raise awareness about this book, thus causing it to sell more copies.
Many of the emails we have received about Ellenby’s book are based solely on the heavily-edited article about her and her book that was published by the Washington Post. Any opinions based on that article are incomplete and, quite frankly, make high-functioning literate people with autism appear to be less than intelligent. If you do not read the entire book, then you are like a person who meets you and decides that all people with autism are just like you. That would be completely untrue.
Zack is not like you. You know who he is. You are smart, so I call upon you to BE SMART. Zack is unable to express himself like you do. He is terrified of close spaces and new places and new people. But he is far from stupid. He communicates, just not as articulately as you. He cannot write much at all, certainly not as amazingly as you can. But if he could, I think he would thank his mom and dad for helping him to live big. He would tell you to open your mind up and consider new things. He would tell you that his mom NEVER ABUSED HIM. That she loves him to the moon and back. He might even tell you to mind your own business, because you have no right to tell him how to live.
I wonder if you truly care about Zack. Do you care about him enough to let him live with the help only his parents can give him? Even if it makes you uncomfortable?
Let me tell you something about people who are bipolar. I am on the high end of the spectrum, like you. I take medication and have a good circle of family and friends who look out for me. I try my best to stay connected to God. I try to help others with BP by advocating and writing.
But there are some BP people who are much worse off then me. Medication has little effect. They are suicidal. They can’t live a full life. All options are closed. Except for one:
Electroconvulsive Therapy (ECT). AKA Electric Shock Therapy.
It is a disgusting and gross solution to me, and perhaps to you too. But I don’t need ECT. I have a choice. Meds work for me. But for thousands who just want to die, they will use it. And it can work for them. It can allow them to live a more normal life.
Zack’s parents were desperate to help him live a more normal life. So they tried something new. It worked, and now this book will offer new hope to many parents who love their children. I know you disagree. That’s okay. You have a right to disagree, but you do not have the right to censor the publication of this book, or threaten my company with any actions. I urge you to be careful. I am not the enemy. I am an advocate and I have hundreds of friends who live with autism. I work with some of them. They rock, just like you.
I challenge you to read the ENTIRE book and THEN state your opinions. They are welcome. Tell the world what you think. Don’t tell the publisher, for goodness sake!
If you really want to state your opinion, then gather your people and put your thoughts down on paper. Write in a constructive way. A way that can improve the world. Write it down and send the manuscript to me. We would consider publishing it if it passes the quality test. I dare you to write your stories down.
God bless you.
A twitterstorm erupted in response to the publisher
https://twitter.com/stevesilberman/status/973626092597559296?ref_src=twsrc%5Etfw&ref_url=http%3A%2F%2Fautismgadfly.blogspot.com%2F
Quote:
Steve Silberman
Verified account @stevesilberman
What on God's earth? This is an official statement from a publisher? Oy gevalt!
Steve Silberman
Verified account @stevesilberman
Mar 13
And the publisher is complaining about @washingtonpost's "editing"? They should try a little self-editing!
Amy Gravino
@AmyGravino
Mar 13
Replying to @stevesilberman
...Are they actually serious with this right now? What in great Caesar's stab-riddled ghost is going on here?
Amy Gravino
@AmyGravino
Mar 13
I just have no words. This is basically a snooty euphemism for "You're stupid." I'm surprised they didn't just send someone to stick their head out of the company building's window and yell, "Your mother was a hamster and your father smelt of elderberries!" Sheesh...
Eve Reiland
@BadassActivist
Mar 13
It's so offensive to me -- grew up with "you're so smart, how can you be so stupid" comments growing up. made me feel incredibly othered, shamed, and stupid.
Ari Ne'eman
@aneeman
Mar 13
Replying to @stevesilberman
Is @koehlerbooks some kind of vanity publisher? The lack of professionalism here is breathtaking.
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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
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15 Mar 2018, 12:19 pm
My take on this is that the author and the publisher are marketing this book by deliberately provoking ND advocates. ie trolling.
In the book except the incorrect use of tantrum instead of meltdown is used. While seemingly criticizing ABA's "extinguishing" of behaviors she is very much extinguishing behaviors she does not like. She used the phrase "indistinguishable from his peers" the ABA mantra that they claim they have moved beyond. The use of these words is no accident, the author is a lawyer a disability rights lawyer and well versed in Autism politics and which words will provoke.
The publisher is obviously trolling with his statement books critics are either not intelligent or the implication that the critics are too high functioning to be really autistic or understand severe autistics, the usual NT's understand autistics better those those evil high functioning autistics do. The putting out of the 1st amendment is a faux issue and the publisher knows it. Any attempt to legally to prohibit publishing the book will be laughed out of the lawyers office. The publisher is picking and choosing which part of the first amendment he likes. Boycotts are a protected and well established form of free speech.
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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
15 Mar 2018, 8:39 pm
Quote:
...the major limitations of Autism, sparking a new conversation which goes beyond simply accepting persons with Autism for who they are, but considers pushing them beyond their comfort zones to learn who they are capable of becoming.
And this is something that people and websites that push all of this 'neurodiversity' nonsense (like many who visit this site) simply do not want to discuss. It's taboo as far as they are concerned, because they would rather just rot in the stagnant hole their lives have fallen into, and continue to play their victim card at every possible opportunity.
Being human, being alive, is all about pushing ourselves beyond our "comfort zones". This applies to everyone, not just people "on the spectrum", and it has been observed that people who fail to do this end up becoming grouchy, bitter, and old before their time (and if they're female they end up with 20 stray cats in their home). They wither and die, and yet we constantly hear from those engaged in identity politics about how "acceptance" is the road to bliss. No, it's the road to ruin, failure and mediocrity.
ASPartOfMe
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16 Mar 2018, 2:59 am
Lintar wrote:
Quote:
...the major limitations of Autism, sparking a new conversation which goes beyond simply accepting persons with Autism for who they are, but considers pushing them beyond their comfort zones to learn who they are capable of becoming.
And this is something that people and websites that push all of this 'neurodiversity' nonsense (like many who visit this site) simply do not want to discuss. It's taboo as far as they are concerned, because they would rather just rot in the stagnant hole their lives have fallen into, and continue to play their victim card at every possible opportunity.
Being human, being alive, is all about pushing ourselves beyond our "comfort zones". This applies to everyone, not just people "on the spectrum", and it has been observed that people who fail to do this end up becoming grouchy, bitter, and old before their time (and if they're female they end up with 20 stray cats in their home). They wither and die, and yet we constantly hear from those engaged in identity politics about how "acceptance" is the road to bliss. No, it's the road to ruin, failure and mediocrity.
Like anything else in life acceptence is fine in moderation harmful if overdone. Acceptence is fine as a way of accepting what your weaknesses are so you can understand what your comfort zone is. It also is good when it is used to prevent yourself from wasting time and pursuing unrealistic goals that is better used improving oneself in realistic ways. All the willpower in the world will not drive you to win the Olympic Marathon if you have two shattered legs.
On the other hand using acceptence as a crutch will prevent you from ever improving. So many people mistake disability for inability and that is a big problem.
We have a limited amount of time here. No amount of will power will prevent you from eventually dying.
Thinking of yourself as a constant helpless victim becomes a self fufilling prophecy. Bullies pick up on that in you. You will die never being happy.
On the other hand I hear a lot people say that they are driven, they are never satistified, wasting even a second not persuing your goals pushing oneself to the max is a sin. Americans put people like that up on a pedestal. These people will die never really knowing happiness and having missed out on many good things in life many of them are subtle.
_________________
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
What a jackass.
25 Mar 2018, 12:36 pm
So the mother pushed her autistic son to be in public that was too overwhelming for him so he could get used it and he did because all the meltdowns stopped?
This was something my own mother did to me too. She called it therapy so I would get used to the noise and after a while I learned to ignore it because I got used to it. Now places seem quieter now and I thought people had just gotten quieter but no my brain decided to turn down the volume.
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Son: Diagnosed w/anxiety and ADHD. Also academic delayed and ASD lv 1.
Daughter: NT, no diagnoses. Possibly OCD. Is very private about herself.
ASPartOfMe
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25 Mar 2018, 4:02 pm
League_Girl wrote:
So the mother pushed her autistic son to be in public that was too overwhelming for him so he could get used it and he did because all the meltdowns stopped?
This was something my own mother did to me too. She called it therapy so I would get used to the noise and after a while I learned to ignore it because I got used to it. Now places seem quieter now and I thought people had just gotten quieter but no my brain decided to turn down the volume.
This was something my own mother did to me too. She called it therapy so I would get used to the noise and after a while I learned to ignore it because I got used to it. Now places seem quieter now and I thought people had just gotten quieter but no my brain decided to turn down the volume.
I pushed myself to go to bars and clubs and crowded subways and such because I did not know I was autistic and thought everybody else was just as uncomfortable in those situations and overcame so why shouldn't I. I never got used to it but developed a "thicker skin" and more confidence in those situations. Now that I know I try and ration the amount of time I spend in those type of situations.
_________________
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
29 Mar 2018, 7:12 am
ASPartOfMe wrote:
League_Girl wrote:
So the mother pushed her autistic son to be in public that was too overwhelming for him so he could get used it and he did because all the meltdowns stopped?
This was something my own mother did to me too. She called it therapy so I would get used to the noise and after a while I learned to ignore it because I got used to it. Now places seem quieter now and I thought people had just gotten quieter but no my brain decided to turn down the volume.
This was something my own mother did to me too. She called it therapy so I would get used to the noise and after a while I learned to ignore it because I got used to it. Now places seem quieter now and I thought people had just gotten quieter but no my brain decided to turn down the volume.
I pushed myself to go to bars and clubs and crowded subways and such because I did not know I was autistic and thought everybody else was just as uncomfortable in those situations and overcame so why shouldn't I. I never got used to it but developed a "thicker skin" and more confidence in those situations. Now that I know I try and ration the amount of time I spend in those type of situations.
I used to do the same thing. We're both too old too have been diagnosed when we were younger, so how could we have known other people 's experience was so different? Like you, I now limit my exposure to overwhelming situations because there's no reason why I shouldn't.
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"Donkeys live a long time. None of you has ever seen a dead donkey."
30 Mar 2018, 7:34 pm
Quote:
I used to do the same thing. We're both too old too have been diagnosed when we were younger, so how could we have known other people 's experience was so different? Like you, I now limit my exposure to overwhelming situations because there's no reason why I shouldn't.
Ditto. I thought everyone was as miserable on the inside as me, and just doing a much better job at hiding it.
I thought the whole world was full of fakers. Now I know it is, but not in the way I originally imagined.
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