Natalie Palumbo's "NOT Born This Way" Art Project Draws Attention to Version of Autism Often Overlooked
By Anne Dachel
I recently received an email from a high school student in Lexington, SC. Natalie Palumbo, 17, is a person we can all learn something from. Her life experience is both a wakeup call and example of what love and support really mean. Natalie came across my name when she read my story, "Autistic: Different vs. Disabled and Media Portrayal", about the image the public often gets of autism from the news-stories about high functioning kids who seem pretty normal.
Natalie's brother Anthony, 21, has autism and of course, it's had a dramatic impact on her life too. Natalie wrote to tell me about an art project that she did entitled, NOT Born This Way. The quality of her work speaks for itself and there is a chilling quotation from Beth Arky of the Child Mind Institute:
"For parents whose children were among the first wave diagnosed with Autism, the pressing issues have gone well beyond awareness. These parents face the harsh reality that when their children reach 21 or 22, alll the educational supports and services under the federal Individuals with Disabilities Education Act will vanish. This forced transition pushes them into the woefully lacking system for disabled adults."
This is the side of autism that no one is talking about. The experts and health officials who happily tell us that all the disabled children everywhere are the result of "better diagnosing," never have to prove it. No one has ever been able to show us a significant population of adults with autism-especially severe autism, whose symptoms are easily recognizable. It seems that doctors aren't doing "better diagnosing" when it comes to the adults. Officials and experts also don't have to show us where all these children will end up someday. If it's really "better diagnosing," young adults with autism will go where autistic adults have always gone—but no one knows where that is.
I was so impressed with Natalie's work that I asked to interview her about her life and her views on autism. Here's what she had to say.
Question: Your brother is obviously a big part of life. How has autism affected him?
My brother has low verbal autism. Anthony's speech is limited to short phrases to communicate his needs and desires. He is extremely echolalic, which for him is the rote repeating of dialogue from television, movies, and video games complete with gestures. The echolalia can go on for hours, and he will choose dialogue to match his mood. If he's angry, he might choose dialogue where someone is screaming. He has obsessive compulsive disorder, and can make the same request every few minutes for several hours. Anthony is lovable with a sense of humor. The challenge comes from his extremely repetitive and obsessive nature. Extreme patience must be applied to everyday life every minute of every day.
Question: What do you see ahead for Anthony?
Anthony does not grasp concepts. The idea of working a job, even when you don't feel like it, is beyond his thought process. He feels no social pressure to comply with authority. Anthony is good natured, which is the very quality that makes him vulnerable. He can't interpret intent or be wary of danger. With such limited language capability, he needs constant supervision. Anthony will not be able to live independently. My parents will take care of him, and when they can't, I will take over.
Question: What services are available?
Anthony is aging out of Special Education in June 2012. While services and programs were discussed, the consensus was that none of them were appropriate for someone with low verbal autism who needs constant supervision. There were no programs that met his specific needs. Anthony can be agreeable, but only when you can match his thought process, which takes lots of dedication. None of the programs were structured for individuals who needed constant mediation and supervision.
Question: On your work are the words, "NOT BORN THIS WAY." What do you mean by that?
Anthony was not born with autism. He was born healthy, and met all developmental milestones until 15 months when there were no words. Anthony suffered a severe allergic reaction to penicillin at 12 months. He had head to toe nickel sized hives, swollen joints, and high fever for four days. In spite of this, his vaccination schedule was adhered to without waiver. All of Anthony's vaccinations had the mercury preservative thimerosal. Anthony exhibited many mercury poisoning symptoms for years, only to be told that "many children with autism share these characteristics" and his symptoms were dismissed. This forced my parents to research on their own. As Anthony got older, fewer and fewer specialists wanted to help.
Question: You mentioned that your senior project will be called "Autism in Society." What are you going to include in that?
I wanted to discuss media portrayal of autism and how it differs from reality. I found that most people's perception of autism differed greatly from my experience. Many had never heard of a person with low or non verbal autism. The reality of meeting my brother would shock some and drive away others. Only a precious few asked questions and wanted to learn about him. As a sibling, I was often frustrated when a lesson plan included an "inspirational story" of a child with autism. The stories presented were always focused on someone who was functioning at the highest end of the spectrum and didn't resemble my brother at all. It frustrated me that high functioning autism was their understanding of the condition. The same students who were moved to tears over these stories showed no sympathy for my brother and me. Research guidelines required fact driven reporting. I could share my observations, but not present opinion as fact. For me, I wanted to be more educated about autism so I could be a more effective advocate for my brother.
Question: How has your life been different from the lives of your friends?
I've been raised my whole life to be a caregiver. My mother always said, "The autism doesn't care about being fair or whose turn it is, it just needs to be managed." She always made sure I was rewarded for accommodating my brother so we could have family time. Anthony had problems transitioning from one activity to another. He needed coaxing and transition items to feel comfortable. I thought all of this was normal until I was older and watched friends interacting with their siblings. At that point, I knew my life was different. I began drawing to cope with my loneliness. Anthony has his own way of speaking. We call them "Anthonyisms". He began asking me to draw for him by saying "getting drawing" and the name of the character. Drawing became a way we could communicate. My teachers recommended me to fine art programs, and I want to make visual arts in film and animation my career. Anthony inspires me to look at the world visually. The hardest part for me is deciding who to let in my life. I will meet someone I believe to be nice, and wonder about pursuing a friendship. Then I start thinking about preparing them for Anthony, and wondering if they'll be accepting of his autism. What if I let them into my life only to find out they have no compassion for my brother? What if they're not worth it? Before I make a friend, I have to expose all my pain. By the time I contemplate all this, I am exhausted. I want to protect my brother by surrounding him with understanding people. They are hard to find.
Question: What message do you have for people reading this?
The world is more expansive than the media. Not everything you see is the whole story. The media is a business, and they want to tell stories that fascinate and intrigue. The savant skills of high functioning autism can be compelling, but the high end of the spectrum is just one facet. Ignoring moderate and severe cases hinders medical progress, and much needed research. The counter campaigns against a cure for autism breaks my heart. They believe their high functioning status in the spectrum defines the condition. It would be like focusing on only the mildest forms of any illness, condition, or disease because they seem more media friendly, and ignore the fate of those more intensely affected. It would be shameful for its neglect. If you can argue against a cure, you obviously don't need one. For those who can't fight for themselves, they need us to never give up.
What Natalie talks about here is what life is like for countless thousands of families in America. The media, the medical community, and health officials are content to abandon all these children as victims of a mysterious disorder they can't understand, and therefore nothing is being done.
Imagine what this country will be like in 10 years. Stories about autism awareness and the latest genetic study will disappear. By then, the focus will be on what autism is doing to social services and the unimaginable cost. The demands of a generation of young adults with autism will vastly overshadow the impact of the retiring baby boomers. The truth is, you can't drastically change the demographics of a nation and just learn to live with it. It isn't normal and acceptable to lose a million children to a disorder no one heard about 25 years ago. Anthony is every child with autism aging out of the school system. There is nothing for them.
Anne Dachel is Media Editor for Age of Autism. You can subscribe to her news feed at www.AnneDachel.com
Thanks for sharing your story, My daughter just graduated from High school she is verbal, but her social skills are very limited, I am no sure what direction to take with her, and my son is 8 he is nonverbal, I wonder what it will be like when he turns 18.. Your brother has you, and that is something I am trying to get my other NT girls to be more supportive of their siblings
Posted by: Luz Hernandez | June 24, 2012 at 04:42 PM
Your family is truly blessed to have each other. Natalie will make a difference in this world. It's all anyone can hope for.
Blessings to her mom too for raising such an amazing woman.
Posted by: Dolly | April 29, 2012 at 08:32 AM
Thank you so much for this interview Anne. I am the mother of four children. My oldest is almost 17 and it sounds like he is very much like Natalie's brother, with even less language. My other children are 15, 5 and 2. I often wonder about their feelings. I know there are times that my 15 year old wants to protect me and tries to be strong. It was really helpful to hear Natalie's feelings and point of view. I am always complaining to my friends and family about the media portrayal of Autism as the cute, quirky kid who can name all of the Presidents or tell the make of every car that goes by. They don't show the 17 year old whose mother is brushing his teeth, whose stepfather has to help him shower every morning before work and school and who is constantly at different doctors trying to figure out one ailment or another. Natalie is a wonderful young lady and she has not only spoken for her family but for mine as well.
Posted by: Christine Ruiz-Falkowski | April 27, 2012 at 01:07 PM
Anne, thank you soooo much for posting this interview with Natalie. Like her, i have a sibling with autism, a younger brother.
So far in my life i haven't come across many autistic kids - living in India, there aren't many places where children with autism can go to learn, and neither are there any government policies for kids with autism, to help them gain the education they deserve (at lest i am not aware of any such policies). My brother has been home-schooled most of his life, this year he turned 13 (i'm 18! :P).
It was heartwarming to read what Natalie had to say, and i could fully relate to every word! My brother is very similar to the description she gave of her brother, and like her, i have grown up being a caretaker of him, helping out my parents.
I feel society really needs to be more aware of what autism is and how it affects children. In India, many people are completely unaware of this condition, and most children go undiagnosed and are labelled as "retards". That really upsets me!! My brother is a wonderful, smart, funny human being, who can do away without anybody else's judgement... I completely agree with Natalie on the point that it is soo hard to find people who are accepting of kids with autism. I too find it difficult to meet people who will share my love and compassion for my brother... it's a rare but welcome find.
I am a student of fine arts as well, and my brother and i communicate a lot via drawings of his favorite characters, etc. This is why i am soo thankful for having stumbled upon this article, to have finally heard from someone who has gone through the same things that i am going through. I didn't know if there was anybody else out there... :)
Natalie, thanks for sharing your story. I finally know i am not the only person in this situation... and that means a lot! :)
Someday, i hope to change the perception people have of autistic kids, especially in India, and hope that communities will become more accepting of them. I also wish to set up centers for siblings with autistic kids, like me, cause i never had any support in this regard (except my parents), as well as teaching and training centers. I feel this is really needed in India! And i am sure it's needed elsewhere in the world as well... Here there is a paucity of help for families and children with autism... i need to fix that! And i know my passion and determination will make it happen!
Posted by: Sneha | April 27, 2012 at 04:59 AM
Thank you Anne - - Natalie is a shining example and provides hope through honesty and conviction--
Posted by: mlinn | April 26, 2012 at 11:08 PM
Anthony is one extremely lucky young man to have such a loving, understanding and emotionally mature sister. The Americans are an extremely unlucky nation to be betrayed and pushed from the cliff by their own medical establishment and political leaders. Beautiful story, beautiful person Natalie who epitomizes, what being HUMAN really means.
Posted by: veritas | April 26, 2012 at 08:14 PM
Natalie and her like minded peers are going to be the ones who fix the nightmare. She, like my daughters, are not being brought up with there minds bathed in unchecked main stream propaganda. I am seeing to it that they know exactly what happened to their brother, how corrupt and untrustworthy their government is, and how to research and ask the right questions. (follow the money) But most important put their faith in God not man.
Posted by: Adam M | April 26, 2012 at 07:27 PM
Beautiful artwork from an incredible young woman. Thank you for the interview, Natalie, and I wish the very best for you and your brother and your family.
I thought it was interesting that Natalie said the media portrayed primarily high-functioning individuals with autism and asked positive questions. The autism advocates I know are always complaining about the negative portrayal of autism in the media. Bizarre disconnect.
As I type here, my son, age 22, has had a horrible day at his adult services provider. During different activities, he yelled, hit himself, hit others. The transition from school to the adult world last year was indeed like "falling off a cliff." I empathize with Natalie when she said that specialists no longer wanted to work with her brother. I've found that to be true as well -- no one is really interested in treatment, therapy, or cure once your child is no longer a child. Then it's all supports and services (if even those exist). Why don't people realize that continuing research into treatment and cure -- even into the adult years -- even for those low functioning --would result in fewer supports and services being necessary?
Posted by: Aimee Doyle | April 26, 2012 at 06:31 PM
In regards, to my previous post on "high-sensitivity and introversion" and how introverted/highly-sensitive children may be more vulnerable to vaccine-induced brain injuries of all kinds, take a look at these studies that demonstrate just how innately different the brains of introverted and extroverted individuals really are:
The Neuroscience of Extraversion and Introversion
http://samsnyder.com/2012/04/17/the-neuroscience-of-extraversion-and-introversion/
Posted by: Rachael | April 26, 2012 at 03:30 PM
Anne, much love and respect for what you do ...remarkable article about remarkable human beings.
You are a warrior for truth and sanity on this issue---virtues that hardly exist in the public health realm, unfortunately dominated by fraudulent "health care" providers indoctrinated in germ-theory.
Posted by: Dr. Febbraro | April 26, 2012 at 01:16 PM
Natalie is a brave and unselfish person. She has the view of someone educated by the reality of knowing and coping with Autism in its label deserving form. I recently was tempted to respond to aperson who posted in another online forum who opposed the cure idea and I wrote up a response,but did not post it. Natalie's words so aptly describe what I think too and in supposrt of her I am going to post what I wrote , but did not post in the other forum along with the statement in the the other forum I wanted to respond to.
Alison was in the other forum.
Alison wrote:
"you should stop to think about *why* so many autistic people are so vehemently opposed to any attempt to "cure" autism, and for that matter why you so rarely if ever hear any autistic person speak out in favour of the cure movement."
This brings up a lot of issues. No one is forcing a cure on adults with Autism. It is up to the parents to decide if a "cure" is in order for a child with Autism. Many parents desire a cure and many children have been helped to function as no longer showing/having Autism. A new treatment for Rhett Syndrome, a form of Autism, involves a bone marrow transplant that corrects methylation issues in the child. Is this an attack on Autistic people?
From my understanding the Autism spectrum includes high functioning people who may in the main find a "cure" approach condescending. How another thinks about the HF's "condition" is likely to be a bit subjective with some seeing it as a challenge at times mixed with gifted areas in some cases and others seeing it as being only different. But, even in HF autism the label of Autism makes them part of a group that is not thought of in the same way as a group of people considered introverts or extroverts or some other description. Being part of a group defined in the DSM adds a dimension to the mix that cannot be waived away by invoking "neurodiversity" alone.
As for non HF's it would seem fair to say that many, if not most, don't think about the matter and many don't understand the concepts involved. The variations in understanding among the lower functioning may mean at times they might have feelings at some level about the matter, but cannot engage the discussion. Some clearly are unable to enter the world of viewing how others see them in the first place, so they certainly don't know to care. To be blunt I find discussing the needs or approaches and attitudes towards HF's and non HF's should not be the same anyway.
The difference between HF’s and LF's is so great at times that to talk about one group is not accurate or relevant about the other group whatsoever. This confusion almost seems to be what some people want. A HF who says I am misunderstood and my school mates found me to be a little different doesn't fit into a discussion about head banging, little or no engagement, or non-verbal children who fit what I have historically thought by past professional diagnostic criteria to more nearly reflect Autism.
Autism now is, or includes, the "nerd" next door. It is being morphed into some kind of vogue eccentrism that paints them as ahead of their time free thinkers who don't fit in because they are more in touch with the needs of humanity and are advanced visionaries to lead the race into enlightenment. I find this to be a part of the driving force to suppress the notion that there is any major dilemma in having any measure of Autism. When Autism is cast in such a social light you can be sure there will be a group of non-Autistics ready to promote this facade and join the social movement aspect this creates as to cast themselves as enlightened enough to share the vision of the misunderstood as though this was like joining the civil rights protests when it was unpopular. This is not at all like such movements and while adopting such a view may make some feel better about themselves it hinders the ability of perhaps the majority with Autism to be understood properly as individuals with serious neurological and often systemic medical problems. This hindering mindset, not based in reality, is the opposite of an enlightened one.
There is a point when brain development is divergent or harmed to a degree that it does not meet the definition of normal brain development and some experts have concluded there is such a thing. Some may not like me saying this, but being honest is loving and self deception about this is not helpful and is often likely selfish. We recognize diseases, disorders, and malformations that hinder function in every organ and system of the body, including the brain, and seek treatments, surgeries, and medicines to correct and deal with them and people cheer. Yet, when the same thinking of about the brain in Autism is held forth many wish to defy this logic of thought.
The ignore it and it will go away or not matter attitude is embraced by the “no cure” for any people crowd. There is no need for a cure, but we will give them special behavioral therapy or drugs to effect mental status. We will spend millions or billions of dollars on therapies and research, but we need no cure? Is all this effort simply to spend time and money on something that needs no cure? There is clearly enough evidence now to show that Autism is a developmental disorder that for perhaps the majority needs a cure or better yet, prevention.
Let those with HF Autism who can hold jobs and live productive lives be what they wish and we can all applaud their success. These types probably had parents who did not deal with the difficulties the rest with Autism present in so many arenas for the parents and the child themselves. These non-Hf children deserve and need a cure or a prevention of the condition.
Finally, many parents of affected children rightfully do not want their children to be outcasts or to feel defective, and the easiest way to shield a child from these cruel and unjust stigmas is to simply tell them they are no different than others or are simply different from others. They are different and having a disorder is not reason to stigmatize anyone. But, denial is wrong too as it seeks a view that ends up preventing the will to research and pursue treatments and prevention for those who are affected in more serious ways.
From my viewpoint we are not talking about X-Men here whose only differences are special powers or altered appearance. So, a hypothetical question seems in order and it is tenuous as the causation of Autism is still being pursued and debated. But, if future HF's would no longer exist with Autism as part of preventing Autism for anyone, would those now living HF's think that there should be such a prevention applied with the outcome of there no longer being anymore Autism? For so many children with Autism I cannot think it but cruel to not seek to prevent the condition in them.
Think about it, how much is not part of a future for perhaps the majority of those with Autism? Could those more affected get married, have kids and raise and care for them, maintain a decent wage job, protect themselves from social dangers, and for many care for their daily living needs?
Posted by: Visitor | April 26, 2012 at 12:49 PM
NOT-BORN-THIS-WAY, but the one thing I think that children who go on to develop vaccine-induced autism, or other brain injuries may have in common is that they may have been born highly-sensitive; sometimes gifted. The spectrum of autism is actually based upon degrees of introversion; high-sensitivity is related to introversion a personality trait that is embedded in the structure of the brain from birth, which can be seen on PET scans. So being introverted or highly-sensitive may lend some susceptible children more vulnerable to injuries from environmental toxins, including vaccines.
Some children are born inordinately sensitive to stimulation coming from their surroundings (bright lights, noise, smells etc). Stressors to the brain and nervous system come in many forms, including repeat/too many vaccinations. Introversion is determined by the neuroanatomy and neurochemistry of the brain making some children by design, more sensitive to vaccine-induced brain injuries. These are the children who by birth "are" the canaries in the coal mine.
Posted by: Rachael | April 26, 2012 at 12:44 PM
Kristine (and everyone):
WE are the media. The old media has failed us and will continue to do so.
I've found Facebook to be a pretty good way to network, get the word out, and put it in no uncertain terms for anyone who makes their way to my wall. Yes, there's still a lot of "preaching to the choir," but it's easier and has been more fruitful (for me at least) to reach young people who are open to understanding and who will finally turn the tide--ever so slowly, it seems.
I also open my mouth whenever there seems to be any good that might come from it--those who are deep in denial, however, will most likely never get it (or admit it) but the siblings--as so many have said--will lead the way with all of us.
Posted by: Terri Lewis | April 26, 2012 at 12:35 PM
Love it! Natalie, I hope you start a campaign for yourself and your brother to visit the president and tell him your story. Polly Tommey did a billboard campaign and was successful. Do it! You are the perfect advocate for these kids. Your brother is one lucky dude to have a sister like you.
Posted by: call the police! | April 26, 2012 at 12:08 PM
Wow!! I am so impressed by Natalie, she is wise and articulate beyond her years. Her brother sounds very similar to my son who is only age 7 but we struggle with the same issues that she very eloquently describes. I, too, am saddened and angered by the media coverage of autism. When CNN had their ireports and they asked "what is a positive aspect of living with autism?" as the only directed question, I was livid. Would they ever ask that about ANY other illness (even mental illnesses) or diseases? What is a positive aspect of living with schizophrenia? Bipolar? Cancer? Diabetes? MS? Why is this THE question a reporter asks? The public really wants to believe autism is totally fine so that is why those stories are latched on to.
I wanted to add that Natalie's artwork is amazing. I wish her the best of luck for all her future pursuits.
Posted by: Kristine | April 26, 2012 at 11:22 AM
What a beautiful story. I related in particular to the almost astonishing stupidity of the doctors that continued with the vaccine schedule even though Anthony had a severe allergic reaction. I don't have an autistic child but an autoimmune child that I also consider part of the vaccine damaged. My child was immunized against whooping cough and still got whooping cough. She was sick for about four months off and on with it and still the doctor continued with the vaccine schedule. In fact, the doctor was most concerned that her chronic illness might lead to lifelong hypochondria. The MMR that probably triggered her autoimmune disease was nothing compared to the potential for faked illnesses.
Posted by: Kapoore | April 26, 2012 at 11:20 AM
This is the article, out of the many I have read during "Autism Awareness Month", that has touched me the most. I hope that this young woman will be an example of the generation that will continue the mission of all the parents in getting the word out. I truly hope that my oldest daughter will grow up not being bitter about the autism that has affected her 3 siblings and taken over our family. I really struggle to make sure she is positive and not bitter, and help her to understand how to handle it but it is so hard. The sentence "My parents take care of Anthony. When they can't, I will take over" really struck me. I hope by the time my children age out of the system, there will be more in place so if my daughter is willing to help care for them, she won't feel so alone and will feel empowered to take it on. If not, I will be grateful if she will be able to at least love and look out for them.
Posted by: Carolyn S. | April 26, 2012 at 11:11 AM
This article is one of the most important things I’ve ever written. It personalizes autism. Individual stories like this make the tragedy so real. (It’s like the difference between seeing statistics on the Holocaust and reading the story of Anne Frank.)
I am so impressed by this young woman.
And one doesn’t have to look far to see proof of what Natalie is talking about. Here’s a story just out in MI.
Lack of state services for aging autistic makes adulthood like 'falling off a cliff'
http://www.freep.com/article/20120425/NEWS06/204250376/Lack-of-state-services-for-aging-autistic-makes-adulthood-like-falling-off-a-cliff-?odyssey=tab%7Cmostpopular%7Ctext%7CFRONTPAGE
Anne Dachel
Posted by: Anne Dachel | April 26, 2012 at 11:08 AM
Even though my two NT children had two siblings with autism, I think they turned out really well. So much for the refridgerator mom theory heh? One became a teacher in grade school (in which she identified autism in four children and were profusely thanked by their parents), and another is a home designer. Both have compassion towards individuals with autism and other disabilities, and often go out of their ways to make sure they are comfortable and thought of. Not too shabby. But I can tell you, it was a rough go for a while. They had to defend their siblings at bus stops, at church (which I think is disgusting), and other times sometimes not to their delight. They had "poundings" from them as children, and they learned that mom and dad were in a war much of the time of their growing up and didn't demand our attention (but probably needed it). They didn't think life was handed to them on a silver platter so they see both aspects of life and won't be overly disappointed if things don't go their way, aka, they definately aren't the ME generation. The only time autism was cool was when we could go to the front of lines at Disney, ya know? But as time has marched on, they became mothers, and they knew exactly what NOT to do...that's right, no vaccines. If Autism is so X linked and genetic, surely we would have autistic grandchildren no? At least they had to stick on an autism GF CF diet all their lives too, which probably put them to an advantage, as well as not have amalgams in their mouths, and oft came to our IV chelation drips and were glutathioned at the same time, so that they were "clean slates". Now they can preach the "word" that autism is preventable if you know the key elements...and unfortunately, if those key elements are in place, you get the russion roullette gun to the head. I am sure today, they think how their brother and sister were sacraficial lambs. Autism saved my grandchildren FROM autism, if you get my drift. Unfortunately, unless you have experienced and LIVED with autism while growing up, it won't concern you. Such is unfortunately why, there is no alarm over our numbers...until it becomes your problem, it ain't a problem, sigh...
Posted by: kathy blanco | April 26, 2012 at 11:01 AM
Thank you so much Anne and thank you Natalie!! You are indeed wise beyond your years and have much to tell the world. Thanks for speaking out for the children who can't.
Posted by: healthforchildren | April 26, 2012 at 10:08 AM
Natalie, that's an an amazing visual piece that should be reproduced and mass distributed!
Posted by: Jen | April 26, 2012 at 09:57 AM
This story is so real to me. My son will be 17 years old this year, and his sister just turned 15. My son is very similar to Anthony, although probably even lower functioning. I know my daughter will not be able to care for him because she will need to have her own life, her own job, her own family, and our son requires 24/7 monitoring. I don't know how long my husband and I will be able to care for our son because the older he gets, the stronger and more aggressive he gets, in spite of being a very loving person. This appears to be a nightmare with no answers. My prayers are not only for the future of my son and our family but for all the other families who are needlessly joining our ranks because of the suppression of facts. God help America and indeed the world.
Posted by: A. F. | April 26, 2012 at 09:45 AM
Natalie is a girl who inspires faith in mankind. Her strength of spirit will face up to the catastrophe and provide compassion even while others ruthlessly exploit Anthony for all he is worth:
'Despite a new APA policy designed to address conflicts of interest (COIs), nearly 70% of current DSM-5 task force members have financial relationships with pharmaceutical companies...
'The APA has responded to the PLoS Medicine analysis by saying that the DSM-5 development process “is the most open and transparent of any previous edition of the DSM”'
http://www.plosmedicine.org/article/info%3Adoi%2F10.1371%2Fjournal.pmed.1001210
Posted by: GH | April 26, 2012 at 08:44 AM
Incredible interview. Natalie's compassion, wisdom, insight and commitment to her brother are remarkable. For all the millions of dollars Autism Speaks has spent on awareness, Natalie exposes how very unaware America is of autism in its most debilitating forms. The campaign to hide the Anthonys from the public eye so that America only sees a positive, inspirational view of autism seems to be working, judging by Natalie's friends' reactions to her brother.
When I mentioned to someone that my son is on the autism spectrum, he replied "Is he a genius?" At the other end of the spectrum of misunderstanding are the haters who claim children with autism are misbehaving, need discipline, or that the parents are shopping for a diagnosis to justify bad behavior.
We really have a long way to go for there to be true autism awareness. Autism Speaks has only compounded the problem by projecting images of "happy shiny people." (They didn't always, but they caved to those who demanded an upbeat image of autism be shown.)
Natalie's artwork says it all. I hope she maintains her resolve and devotion to the cause. We need young people like her to counter garbage put out by ASAN who says autism should not be cured. Maybe she'll start her own student organization on campus when she goes to college - one that tells the truth about autism.
Posted by: thank you Natalie | April 26, 2012 at 08:39 AM
Thank you Anne for doing this story and thank you Natalie for sharing it with us. Your brother is truly fortunate to have you for a sibling It would be my wish that all society could think the way you do about autism. Yes, they were not born with autism. And yes, the media portrays autism by focusing on the very high functioning. April 2, this year, should have been focusing on the non-verbal
and the ones that will require lifetime care. We will all keep up the fight. Best to you and your brother, natalie
Maurine
Posted by: maurine meleck | April 26, 2012 at 08:26 AM
I spoke to a group of educators and parents in Stamford (CT) last night and told them that it's the SIBLINGS of the kids whose lives have been re-railed by autism will make the most impact on laws, healthcare, housing, prevention - because their own childhoods have been radically altered having a sibling with autism in the household. Some rise like cream - as we see here - others suffer terribly. Overall, the siblings I know are amazing youngsters and young adults - and I look to them for help when they grow into adulthood.
Posted by: Stagmom | April 26, 2012 at 08:19 AM
what an extraordinarily focused and fine human being natalie is. i know many siblings of young people with autism and they share her depth, compassion and hard-won wisdom. natalie's clear-eyed commitment to care for her brother, and determination to use her skills in a career that reflects that experience, gives her life a purpose that many people search decades for.
Posted by: dan olmsted | April 26, 2012 at 07:47 AM
This is a very moving story, and Natalie is definitely a child who is wise beyond her years.
Although just 17, she already understands an underlying truth that most American adults either can't, or are just too cowardly to admit. And some of those adults actually have autistic children of their own
NOT-BORN-THIS-WAY
Four simple words that tell the autism story for my son, and I would argue for most cases of autism in the midst of this raging epidemic.
Something is doing this to our children, and I think most people here know that "something" is vaccines.
The tragedy however, is that so do the people who keep blaming it on "'better diagnosing".
Posted by: Barry | April 26, 2012 at 07:09 AM