You Know What I Hate? ...
By Natalie Palumbo
... People that cry over inspirational videos that show no concern in real life. I am 18, a senior in high school, and the younger sibling of a 21 year old brother with low verbal autism.
First, the good news…
My school district honored me on the last day of summer
vacation for my entry for the National Career Development Poster Contest. My visual arts in media poster placed first
in state, and third place nationally in spring of 2012. I was surprised to find out I was also being
recognized for my senior project work (done in junior year), which led to my
becoming a contributing editor for Age of Autism. My subject for senior
project was “Autism in Society: Media
Portrayal Versus Reality”. District
recognition was a very joyous moment
for my family.
Shortly after that, my school district informed me I was selected as student of the month for my accomplishments. Typically, they send out a press release across the district, but they felt this accomplishment was important enough to notify the local media. I was thrilled! On Friday, October 19, I was interviewed by Jennifer Wirtzberger, a reporter for WLTX 19 in Columbia, SC. We spent about 2 hours together for the interview, as well as trying to get Anthony to overcome his reluctance and interact with me. The big camera made him shy. At 7 PM that evening, our story aired.
Jennifer’s interpretation was beautiful and heartfelt, and showcased what my family and I struggle with every single day. I am grateful for the support from my school district, close friends, and everyone who encouraged me throughout my life. I am profoundly touched, and I thank everyone who was there to support me.
This morning, October 20, I came across an article written by Dan Olmsted. The line that shocked me the most stated that, “The morning shows were agog Friday over the duet between Katy Perry and a tween girl with autism, to be broadcast on tomorrow’s “Night of Too Many Stars” benefit on Comedy Central. On the Today show, Al Roker said he teared up, and trotted out the old “it must be my allergies” joke as a way of calling even more attention to it.”
I watched the video in which Jodi DiPiazza performs a duet with Katy Perry, and my emotions were extremely mixed. I was so happy to see that Jodi emerged from the depths of autism with such amazing skills in music, and could perform in a professional manner in front of such a vast audience. I can only imagine her family’s joy. However, this video did not make me cry. I was overcome with dread. My concern watching it was that more people I know would focus on Katy Perry’s contribution than the young girl emerging from autism. As a sibling, this just seems like another video that will inspire tears from the same people that show no compassion for individuals like my brother.
Case in point…
I was recently told by a close friend that my constant focus on my career was “inhumane” and I should live for the moment and just “have fun”. I was heartbroken. This person knew me very well, and should have understood my determination comes from the reality that my brother will need to depend on me for the rest of my life. I am his only sibling. I am just waiting for this same person who was critical of me (along with many others) to celebrate Katy Perry for demonstrating similar concern. What I care about most is funding for medical research so that more may achieve such a marvelous recovery.
I appreciate events and celebrities that support autism research and funding. I cried many years back when Stephen Colbert donated his own money on a big paper check. However, the perception that autism is a novelty of childhood that miraculously goes away is heartbreaking for me. So much effort goes into that success. Generally, that effort is only focused on the very young, and the highest functioning. I have witnessed this attitude.
Jodi DiPiazza is an example of why you can’t toss people with autism aside. However, there is so much media focus on high functioning children with autism that older individuals like my brother are forgotten. It shouldn’t matter where you are on the spectrum, or how old you are. Everyone with autism needs treatment. Everyone with autism needs a miracle.
Natalie Palumbo is Contributing Editor to Age of Autism.
Sia,
My son struggles to learn to speak. Though he can speak, he speaks at a level about 5 or 6 years younger than his age.
By the way,he comprehends speech just fine at his own age level..
But he struggles desperately to form words easily. He goes to speech and tries hard, but if someone could offer him a cure, a way to make speech easy for him today, then yes HE wants it. He would choose to be able to speak easily instead of having to work so hard to communicate.
Are you saying that because he has a disability, he should not be allowed to choose to "cure" it?
You can and should choose for yourself . But why is he not allowed to make a choice different from yours?
By the way, if you don't support "cures" then should he really be allowed to go to speech therapy?
What if over time, the speech therapy "cures" some of his disability?
Does that somehow lessen or change who he is? Or is he not the same person, just with an easier ability to speak?
Posted by: Hera | August 16, 2015 at 01:56 AM
It seems to me that if you think HFA/Asperger's isn't "real autism" but you want a cure for autism then you want you actually want is a cure for intellectual disability.
Posted by: Sia | August 15, 2015 at 03:27 PM
I'm addressing all of you. I'm not singling out Natalie at all. The fact remains that at 18, Natalie is almost twice Jodi's age. You're all talking about an 11 year old autistic child as if she's an emblem for everything that makes you angry. Like all of us, she's a child who was handed a disability and struggles with it everyday. She's not a fabrication of the media, she's not a fictional character. She's a little girl. It's no more fair for the disgruntled to use her as the personifiction of "what's unfair" than it is to accuse the media of using her as a representation of "what all autistic people can do." No one in the media has, in fact, done or said anything of the kind.
Posted by: Mary Brinkley | December 05, 2012 at 08:12 PM
Mary, are you aware you are berating an 18 year old high school student with your sharp comments? Natalie is clear that she is happy for Jodi. Appreciate your taking time to comment nonetheless.
Posted by: Managing Editor | December 05, 2012 at 07:50 PM
PS You wear your bitterness like a fur pelt in the middle of the summer. As the parent of an autistic boy, I take joy in the accomplishments large and small of every autistic person. It takes nothing away from my son's struggle for me to rejoice for the beauty and wonder that Jodi brings to this world. On the contrary, it enhances it. My son brings his own brand of joy and wonder and if you all stopped pitying your lot in life, you might have a minute to find the joy in your own.
Posted by: Mary Brinkley | December 05, 2012 at 07:30 PM
Right here, you're all doing the very thing that you complain about other people doing. The concept of Jodi performing with Katy Perry was to raise money for autism education. You reject that? Also, not a one of you has bothered to even learn about who Jodi is or from whence she came. She is no more or less autistic than anyone any of you speaks of. She's autistic. She's not a "recovered" autistic person. She was not verbal when she was diagnosed with autism and she is not mainstreamed to public school. Is she autistic enough? The point is, along with her autism, she has been able to develop her talents. Jodi, FYI, is an autism advocate. She advocates for your loved ones with autism. How do I know this? I bothered to find out about her. She has a website. www.jodigirl.com She wrote and performed the song for the Toys R Us Heroes of Autism Campaign which raised millions of dollars for autism programs. She works with the ARC in her community. And in her own words "she struggles with autism every day." Don't trash talk one of your own, let alone a little kid who like you, like your loved ones, struggled for every word she speaks and continues to struggle with autism. This thread was started with a complaint that the media uses Jodi and people like her. You're all doing exactly the same thing. Shame on you. You know better. Jodi is not a political or media toy. She's a real person. A real person with autism. Again, shame on you all. She works and gives everything she has in your name, she knows your successes and your struggles. She shares them.
Posted by: Mary Brinkley | December 05, 2012 at 07:22 PM
Natalie, thank you for this piece. It made me tear up so much more than what is often shown of Autism by mainstream media. I'd love to be in touch and find out how we can work together, as we share the same vision of helping adults with Autism - those who will need our support for years to come. www.haciendaoaksestates.org
Posted by: Molly K. Rearick | October 26, 2012 at 05:24 PM
I opened a thread about environmental factors on my blog: http://www.securivm.ca/2012/10/open-thread.html
Alain
Posted by: Alain | October 26, 2012 at 12:16 AM
Alain, well we can sure agree on that! (brain research is in its infancy, complicated...) Certainly vaccines do seem to be something that can easily be controlled for compared to many other variables and there probably are others. Thanks for your vote of confidence but I am sure there are other people much more suitable to coming up with more specific hypotheses of autism neurobiology. My degree is in Child Studies- fairly research oriented with courses in child development, education, physiology, nutrition, statistics.
Biochemistry! Good for you and goodluck with your studies- hey my dad had his bachelors in microbiology (that's what it was called back in the day) and he was in pharmaceutical sales. Many of his buddies went into brewery work, though or worked for dairy companies. I honestly think it would be cool if you did have an open thread on your blog to discuss research trends. Let us know when you think you can get that going and I'm sure people will be interested. Cheers!
Posted by: Jen | October 25, 2012 at 11:14 PM
@ Jen
My blog is at infancy at the moment but my goal so far is to discuss the cognitive science behind autism (which was my area of expertise), some neurobiology of autism (a limited part of my expertise but should be growing as I am doing a bachelor in biochemistry) and finally, the science behind the brewing of beer (which is my current area of expertise and I'll be part of a research group soon).
Regarding environment, I also agree that it play a role but we need to define if the particular environment trigger is controlable by humans or not...Here's a few example:
1-: vaccines, we can control them, both the number, the timescale or other factor like the fabrication.
2-: age of the father, we can't really control for it; hell, I want a baby but I'm 36 years old and given that I'm autistic, there is some good probability that I'll end up with an autistic boy or girl (which is why ONE of the reasons i've studied in cognitive science and still takes courses from time to time).
There may be other factors, some that we can control and some not but we especially need to have a direction, not find 10 000 likely cause (like the editors are doing here by posting about random studies), dissect them here and cause increased suspicion about many factors.
In other word, try to find something, one or 2 factors, study them well and come up with significant result. Try not to find the latest treatment du jour which will likely be rushed to market and likely to mask placebo effect.
Brain research is at its infancy, it's complicated and messy and just perusing Dr. Casanova's research will reveal some of its complexity (differing minicolumns size and attribute in the brain of a clinical population as compared to control, some bigger minicolumns, some smaller). Now if we couple that with neuroimaging research (see http://dx.doi.org/10.3389/fpsyg.2010.00241 for an indication of the kind of complexity I worked on) as well as basic physics, we're in for a lot of work.
How about you all come up with an hypothesis which take into account the current litterature in autism neurobiology (especially, autism neuroimaging) for an environmental trigger or two? your result will likely be very significant and you will be taken into account by the scientific community at large.
Alain
Posted by: Alain | October 25, 2012 at 08:53 PM
What got to me was that you read the article by Dan Olmstead October 20th my son 27th birthday. You are 1000% right... were is the care and concern for adults.
I've spent the last 6 months trying to find 2 support staff for my wonderful and delightful son with severe Autism because after steady regression I can't get him out of his day program fast enough.
6 MONTHS I'm still looking for staff. Where is the care and concern indeed?
Posted by: Jan | October 25, 2012 at 08:20 PM
Alain, hearing about research trends would be interesting and maybe you could give us some info about your blog -I'm sure you would get people to contribute to discussions. More brain power inputting on this research can only help!! There are so many parents/contributers- Theresa, Maria etc. etc. on this site who are amazingly familiar with the research. LOL, I remember being at a party once talking to a doctor and he said he was almost intimidated when he was talking to some of the parents because they knew more about some of the things (pregnancy, certain syndromes) than he did!
I hope that you and others researching can keep any open mind with respect to what is happening to our babies and children- I think there could be many factors to honestly look at to find out why there is pathological overgrowth in the brains of children with autism. Even Courchesne says we need serious, sober science to look at why. I do not believe the post-natal encephalopathy has to necessarily start pre-natally. I am not very familiar with Casanova's brain research to do with minicolums but I have heard of Courchesne- Katie Wright wrote a piece that appeared here- "Courchesne's Brain Study not worth Sacrificing our Children Further." There are some good comments below as to people's thoughts on the research and potential problems about it. Like you say, we may not agree 100% but I feel environment is playing a part (which is not limited to vaccines). I really wish we had more animal model studies that compare vaccination and effects on brain, other bio-markers with non-vaccinated- that would be a good start and help to really settle the matter- and I think it needs settling. I think Dr. Martha Herbert has some interesting research and point of view, too. So share about your blog and hopefully people will participate. Thanks, Jen
Posted by: Jen | October 25, 2012 at 06:22 PM
@ Jen, Welcome.
Regarding the minicolumns publication (and the publications in general from Dr. Casanova), I am aware about it because the doctor (and PI) who hired me wanted to use Dr. Casanova's paper in our litterature review for our group. We also had Dr. Casanova as guest for a conference in 2007.
Alain
p.s. Jen (and other peoples), given that this blog goes fast (on average 2 post a day) and this post date a bit, should I post an open thread on my blog and we discuss about research trends at my blog?
Posted by: Alain | October 25, 2012 at 12:14 PM
@ ASDMama:
>
I want to congratulate you for proving Natalie's point:
You completely ignored the context of her article (in general) and her brother/those not so lucky to break out (specifically).
Bravo!
Posted by: Mr. Cranky | October 24, 2012 at 09:31 PM
Alain, thanks for the info. It will take me awhile to follow up on the info and others may be interested in this as well.
Posted by: Jen | October 24, 2012 at 09:23 PM
I forgot to address this:
minicolumns hosts neurons, not the inverse. I had this confused in my previous comment. The end effect would be more neurons in the brain (avg 23% more).
Alain
Posted by: Alain | October 24, 2012 at 07:32 PM
I ran a few pubmed clinical search and for the most part, regression occur in case of fever and mitochondrial disease (http://www.ncbi.nlm.nih.gov/pubmed/19773461) and also, inheritance of hashimoto's disease from the parent (http://www.ncbi.nlm.nih.gov/pubmed/16598435)....but there is also case of regression in the general population which has been linked to a range of mental illnesses and other conditions which are common enough (see here: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?dispmax=20&db=PubMed&cmd_current=Limits&orig_db=PubMed&cmd=Search&term=%28ETIOLOGY/BROAD[FILTER]%29+AND+%28%28%22REGRESSION+%28PSYCHOLOGY%29%22[MESH]%29+NOT+%22CHILD+DEVELOPMENT+DISORDERS%2C+PERVASIVE%22[MESH]%29&doptcmdl=DocSum and I linked the search to my name in case this link won't work).
We need to ask ourselve how regression present in the non-autistic? Is there other factors linked to regression (both in autistic and non-autistics, epilepsy for example).
Another factor in autism is the brain's minicolumn size; the autistic brain have smaller minicolunms in the brain cell and thus, have 23% more minicolumns as compared to control (see http://www.ncbi.nlm.nih.gov/pubmed/16819561 and also pertinent, a free full text from the same author: http://rstb.royalsocietypublishing.org/content/364/1522/1433.long).
The minicolumn size favor local (and more independant) processing over global and this is the reason why we see increased reaction time on the Raven Standard Progressive Matrix (hereafter, RSPM). The free paper have an hypothesis explaining why the visual cortex of autistic is more solicited as compared to control when solving the RSPM in the fMRI scanner.
I have a question for you: what would be the most likely cause of smaller minicolumn size and 23% more minicolumns in the brain's neurons?
Alain
Posted by: Alain | October 24, 2012 at 07:18 PM
Maybe this would be better discussed on another post but Alain, you characterize autism as another brain-type- BUT why would it change???-as in the case of regression which is quite common in autism. Please don't tell me that the parents just don't notice but their child was really autistic all along. I have worked for many years with parents- specifically in early intervention and I can vouch for their accuracy in knowing when things are normal or not. And since Americans administer hep b at birth, we cannot rule out vaccines or mutagenic possibilities at all there. Interestingly I believe the WHO lists Canada as supporting a hep b in infancy model, yet only 2 provinces have this vaccine on the schedule at birth in reality- even in those 2 provinces I don't know what the real uptake is. It's really quite ingenuous of the WHO to even make that statement.
I think it is a great shame and failure of the CDC and AAP etc. to not have done more in terms of vaccine safety studies to reassure people. Even the ex head of CDC (Gerberding) said the studies of vaccinated vs unvaccinated could and should be done. We need to compare kids or even use an animal model that looks at bio- markers, brain inflammation ( matter) etc. to see what the effects of vaccines are on the infant/child brain.
Posted by: Jen | October 24, 2012 at 05:40 PM
Guard Us All-
Thanks for that. It takes a person of maturity to do that and it's appreciated. I think the problem is that we are all exhausted, scared, tired, overwhelmed, hurt, depressed, anxious...and angry. It's hard to not react to things with emotion because, after all, it is about our children.
Posted by: ASDMama | October 24, 2012 at 03:01 PM
Alain, you can justify your speculation and labeling of Jake but I believe Dr. Offit just doean't want to answer any of Jake's questions! More research should be done on environmental factors- far too much has been done with "genetic" theories and they have been fruitless. Today I worked at a junior high with a young man who has a bruised forehead to to banging it with his knee. He also bolted when we were toileting others. I helped him to shred paper at work time- the other Ed assistant said she felt he was having a pretty good day. I am glad you are doing so well but many are not.
Posted by: Jen | October 24, 2012 at 02:16 PM
ASDMama .... fair enough / I owe you an apology .
And I like it , I like what you had to say that time ALOT .
Sorry for being so angry . But I am . You are not the target of my anger.
Posted by: Guard Us All | October 24, 2012 at 01:02 PM
You are preaching to the choir regarding vaccines. I have been on this road for SEVERAL years now. HOWEVER, I don't believe vaccines are the only cause. That would be naive. I am sorry if that doesn't fit your narrative. We have no idea of the struggles this child and family have gone through. What she continues to go through. I will absolutely celebrate her. Do I celebrate that she and MY children are afflicted? HELL NO! Do I know what it feels like to have family and friends turn away? YES! Am I angry? HELL YA! Do I fight daily? YES! Am I glad someone gives a sh*t to put together an annual televised fundraier for more exposure? YEEESSS!! I will always be happy for a victory--ANY victory, no matter how big or small.
I really had no desire to get involved in this ongoing diatribe. I just wanted to voice my opinion. Have a good day.
Posted by: ASDMama | October 24, 2012 at 11:45 AM
Alain , try not to confuse the two , a determined campaigner , and a stalker .
My hat off to you Jake . Another hero fighting against all odds .
Alain , do your homework , and you are welcome to join us all on the protest trail because there is only one conclusion that anyone can come to . Also Alain if you have kids , take my advice which I know to my cost , boycott the vaccines en masse .
Posted by: Guard Us All | October 24, 2012 at 08:18 AM
ASDMama , there are no positives to a state run poisoning of our children , and there is little to celebrate in my view that one kid has a particular special skill .
If that kid had been left alone , unvaccinated , it is entirely possible that his kid was a musical prodigy anyway.
Why would any government continue to perpetuate the placing of mercury amalgams into people's mouth's , because they are ?
Why would a government continue to fluoridate public water systems ? what do they care about our teeth ? And it does nothing for teeth anyway .
Why would a government continually supress all open discussion on vaccine safety ?
Ask yourself these questions - its an excellent starting point .
He who keeps his head , when all those about him are losing theirs , doesnt fully understand the situation .
Posted by: Guard Us All | October 24, 2012 at 07:48 AM
@ Jen
There's two sides to Jake stalking story; Jake's side which you believe and the other people side which I weight in along with ADI-R and ADOS diagnostic requirement of restricted interest which I also weight in and finally, I also weight in the social disability common to people with a diagnostic of asperger syndrome (and autism for that matter).
Given what I use in the previous paragraph, you can't say that I question his diagnosis; he does a very fine job of displaying it himself in his few videos on youtube.
Now regarding the speculation about his mental health, I stand by it because stalking in itself isn't a diagnostic criteria for autism or asperger syndrome and has been linked with mental health problems and I also disclosed many studies and case report of stalking behaviors associated with mental health problem in my original posts on ScienceBlogs (which I can dig up and post here if needed).
From now, I can refrain from speculating about Jake Crosby but I'll ask you to refrain from speculating about me:
First, I am indeed autistic; I have not been associated with the neurodiversity movement for a long time and I base my conclusion about autism and asperger syndrome based on the current litterature on autism perception and cognition.
My view about autism is in line with the view of a research group which I worked for and conclude that autism is a phenotype of the human brain. It stand to reason that autism is a disability because it's not the most prominent brain phenotype (which is neurotypical) and we need to accomodate the disability of autistic (& asperger) people and also, of a range of other phenotypes too (all the other psychiatric or neurodevelopmental diagnoses).
You maintain that autism is caused by vaccine and underlying the autistic shell lies a neurotypical boy or girls, fine. Given what I know about biology, I maintain that it is impossible that only the neurotypical phenotype is found in 100% of the earth population and that environmental pollutant or insult (including vaccines) are responsible for autism, asperger and all the developmental disability or mental health issues. Prove me otherwise.
Alain
Posted by: Alain | October 24, 2012 at 02:05 AM
Alain, hmmm, I see from some comments you made October 5 and 6th that you have definitely participated in some speculation as to one Jake Crosby's mental health and have called him a stalker and questioned HIS diagnosis. The company you keep (people like Lilady) do not respect parents of vaccine injured kids. So it's o.k. for you to do this, eh?
Posted by: Jen | October 23, 2012 at 07:59 PM
But I do understand that they could have had a segment to highlight ALL types of individuals on the spectrum. I get that and it would have been nice to highlight families and their struggles. I acquiesce to that.
Posted by: ASDMama | October 23, 2012 at 06:46 PM
Just because they are labelled "high functioning"(whatever that is) doesn't mean they necessarily are. There are people with 120 IQs who can't live independently. I say, bravo Jodi!
Posted by: ASDMama | October 23, 2012 at 06:33 PM
Alain,you go by Autistic lurker" and I am not even sure if Alain is your real name, much less know your last name, so you can get over the threats of having a lawyer call me. Many in the neurodiverse movement (which I do presume you to be part of) make bizarre comments such as autism not being a tragedy- in a recent post someone mentioned autism not even being responsible for increased accidents. Pediatrics newest research on the issue of wandering has these stats: 49% wander from safe settings, 2in 3 have had a close call with traffic injury, 32% have had a close call with possible drowning etc etc. To suggest otherwise is dismissive. I can't locate a specific quote where you do denigrate parents- and I will apologize for that since I can't locate something.
Posted by: Jen | October 23, 2012 at 06:19 PM
@ Jen,
Will you excuse yourself from posting that comment or else, do you need my lawyer to call you to confirm that I’m really autistic, that I never dismissed the severity of the symptoms and while I disagree with your conclusion that it’s the vaccine, I never denigrated anyone and finally, do you need my lawyers to tell you that I speak for myself?
Alain
Posted by: Alain | October 23, 2012 at 05:04 PM
Jodi DiPiazza is a Story of Recovery and we all celebrate that. Natalie has written a great piece. I don't think she is being negative. When I watched the video my reaction was "here we go again...another high functioning autistic child". Don't get me wrong I think is wonderful to give families hope. But don't forget the other side of Autism. There are kids who are fighting every day to get at least one word out. These kids have medical and neurological conditions that need attention and unfortunately the help is not coming on their way. I'm sorry but I think we are focusing too much in children on the high end of the spectrum. Jodi DiPiazza was a verbal child when she started therapy. What about children who never spoken. It is time to start promoting awareness for all our kids.
Posted by: Nydia | October 23, 2012 at 04:57 PM
ASDmama, I can't really speak fbuttery one here but it is really infuriating when you see people who claim to be on the spectrum (people like Alain- autistic lurker) actually actively dismiss the severity of what autism is for many and denigrate the parents who feel their child's autism was caused environmentally (vaccines). Maybe this won't be posted because I know it's a touchy subject but as an Ed assistant who does front line work, I feel really upset when someone like autistic lurker (who speaks, writes, toilets himself etc etc.) think they speak for all children/adults with autism.
Posted by: Jen | October 23, 2012 at 11:11 AM
And Natalie, Be ready to forgive your friend. One day she may feel sorry that she lacked the maturity to give you support.
Posted by: Cherry Sperlin Misra | October 23, 2012 at 09:59 AM
Natalie, Because you are doing what you know is right, you will always be able to live with yourself- knowing that you have done your duty to your family. This is true maturity. God bless you.
Posted by: Cherry Sperlin Misra | October 23, 2012 at 09:57 AM
Maybe I am a minority, but I disagree with the author and AoA's stance on this. I know there are many DIFFERENT struggles children have along the spectrum, but what's with the constant negativity? Can't we as a community embrace this child and this wonderful moment as a victory and opportunity to educate?! Millions were donated ... I can't help to think this video of this child will only help! It is a shame this community has to be so divided! I say celebrate ANY of "our" children who succeed!!! I am beginning to feel nothing will ever please this community. You don't like Autism Speaks? Ok, fine. But here comes another funding avenue and a beautiful moment and that is torn apart to! What do you want?
Posted by: ASDMama | October 23, 2012 at 09:19 AM
Hi Natalie,
Each time you write a piece for AOA, it really resonates with me. I had never considered your point, and it is spot on. I can tell you as the mother of 4 kids, 3 w/ ASD on opposite ends of the spectrum, that clip did make me tear up. I teared up watching a little girl with autism play so beautifully, which for a moment gave me some hope. My husband watched is separately and his response was "maybe K could do that some day, he has such an interest in music". Our boys are severe, so I hope that might be a possibility. It was the existence of hope, no matter how small or remote, that made us cry. When they start showcasing the individuals that are not able to sing w a pop star, or demonstrate a prodigy like ability, but simply demonstrate the common thread of humanity that we all share and people make that video go viral I hope the media takes notice. But I am not counting on it as that shows the side that would make the public angry about what has happened to our kids, or make them uncomfortable at the very least. Thank you for keeping severely affected individuals in the forefront.
Posted by: Carolyn S. | October 23, 2012 at 09:04 AM
Well we have to be grateful for the bravery of Donald Trump , Rob Schneider , Jenny McCarthy and Jim Carrey .
The thing I hate is autism and the scoundrels who did it to my beautiful child (we have all your names boys and you will be remembered , and justice will be served).
Posted by: Guard Us All | October 23, 2012 at 05:38 AM
Natalie,
Can you link to a Youtube of your story on WLTX? That would interest a lot of us more than the media hyped version of autism coverage you described.
Posted by: first do no harm | October 22, 2012 at 09:53 PM
LOVE IT! So true, and I felt very similarly. Seeing that video I also worried that when people think of autism they will think of this high-functioning girl and think autism is "not that bad," even though it's called autism SPECTRUM for a reason! People need to know that there are many degrees of autism and not all children are as lucky as Jodi.
Posted by: Maureen | October 22, 2012 at 08:57 PM
Oh Natalie, What a great job of expressing exactly what I've been feeling for the last few days since that video hit the airwaves. And you did it without cursing! (Which I am usually not able to do) Thank you so much for all you do for the community to support your brother and all of our kids!
Posted by: Gettinghardertolookintheseheadlights | October 22, 2012 at 07:15 PM
Natalie, I enjoyed reading your story which is well written and speaks the truth which society often overlook. It is great to see when an individual overcome their challenges but as you stated, it often high functioning individuals. Where is the recognition, compassion for individuals who reached the small milestones (walking, reading, toilet training, etc). Having a child with autism, I too know of this journey. You are doing something GREAT! The love and concern you show for your brother will out weigh all thw negativity you receive. You are a inspiration!
Posted by: Sabrina | October 22, 2012 at 06:03 PM
My son's only sibling died 6 years ago. My son was nearly recovered at age 6, and just as I was about to breathe a sign of relief, he was struck down suddenly, reason unknown (then). Back to square one. Nearly recovered and looking almost typical again in 2009, and again, in 2010 he was knocked backwards so far (with PANDAS/PANS) it was like a bad horror movie. There's no blood relatives except 2nd cousins twice removed who could care less. I've been struggling with chronic health issues. Boy, do I ever feel your pain and anxiety.
Posted by: We can never die | October 22, 2012 at 05:38 PM
First: Your acquaintance who called your work inhumane apparently needs some ABA work in empathy development. . . I say send him or her to a severely special ed classroom to volunteer for a week. He or she will come back a different person! Thank you for what you are doing!
Second: Natalie, As a Mom of an affected but recovering child, I spent a long time being mad, and I still get absorbed by it at times. What helped a lot was going to the DAN conferences, looking at places like Happy Talkers near us in northern california, and seeing people like Dr. Rimfield, Dr. Wakefield, Dr. Krigsman on the research end, and HappyTalker's Sigmans and others on the practical treatment end, most of whom did not personally have a stake in autism but decided to dedicate their lives to helping our children at great financial --and emotional--cost. I focus on Dan Olmsted and other Age of Autism writers who surely have endured ridicule from idiot journalists out there. And Kim Stagliano who by all rights could spend all her effort directly helping her own family instead of trying to save children in the future as well, and Jenny McCarthy who could have a fine old time doing nothing but partying and could have kept her struggles with Ethan private and avoided so much ridicule. As much as you can, focus on the heroes and heroines. And remember that you, my friend, are one of the heroines, who is fighting not JUST for your brother, but for others like him at the same time. THANK YOU!
Posted by: Carolyn Kylesmom | October 22, 2012 at 04:36 PM
Natalie you have a gift for putting into words exactly how we feel as the family of someone affected by autism. My son is now an adult and is very similar to your brother.He is also a person who loves us as much as we love him.He has a devoted brother who feels as passionate as you do. I agree with you that what we need is funding for medical research for our loved ones to achieve the miracle of a recovery!
Posted by: Gayle | October 22, 2012 at 04:22 PM
Superb Natilie,they all come away with banner grabbing headlines ..one liners such as Temple done..it etc give them Autism and see how they get on...they wouldn't have half the courage of our kids and siblings..
Keep writing great
Angus
Posted by: Angus Files | October 22, 2012 at 03:02 PM
Natalie, thank you for your concise assessments of the human condition. Yes, it's so aggravating when people on the spectrum and their families are used as emotional currency to be impersonally observed, rather than experienced wholeheartedly.
A caveat about Stephen Colbert: Because his late father was a vaccine researcher who died young, the comedian has psychological issues preventing him from objectively analyzing and responding compassionately to cases of vaccine-induced autism.
Posted by: nhokkanen | October 22, 2012 at 02:19 PM
Natalie,
So well written and expressed. Thank you! I had the same mixed emotions as I watched that clip. I had a similar feeling when I talked to others about the Temple Grandin movie. The sense is 'Temple did it. Why can't your kid?' It's just not that simple.
Posted by: Nancy | October 22, 2012 at 01:53 PM
"The Morning Shows were agog over the duet with Katy Perry and a tween with autism." Yes, what will really piss me off is if either Obama or Romney try in any way to cash in on this with a photo op or 'meeting with Katy' as neither of them intend to do anything with the very real and growing problem of autism. Neither of them has the sense or morals to stop all the bogus autism gene research and get to the real environmental causes. They don't want to take on pharma. The flag at a nearby school is at half mast lately- a parent/child murder-suicide. I am not positive but I suspect s/he was a little one I worked with a few times as a sub and was on the spectrum.
On the plus side Natalie there are many of us who see the realities. Keep fighting!
Posted by: Jen | October 22, 2012 at 10:35 AM
Well said, Natalie. Very well said.
Posted by: Cat Jameson | October 22, 2012 at 10:27 AM
Natalie
You are right on about all this. There is no pity for a disease that affects the mind and behavior.
They say things like - I can see you are passionate about this.
Let us see how passionate you get when it is your kids.
Posted by: Benedetta | October 22, 2012 at 09:54 AM
Natalie, very well written and said. I know what you mean, about people who will watch a on line video, "tear-up", say that they are "moved", but do not act on that feeling, like write a legislator, or attend an autism training class, or really engage a family member who has autism. We have family members who seem to ignore my family, and that hurts. Your essay is thought provoking and maybe will motivate those bystanders on the fringe, to act. Keep up all the great work!
2asdmom
Posted by: 2asdmom | October 22, 2012 at 07:50 AM