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Childhood American Style

A Sibling Perspective: The Autism Doesn’t Care

NP BowlingBy Natalie Palumbo

One of my mother’s friends sent me an article from the Washington Post entitled “Autism Can Have Large Effects, Good And Bad, On A Disabled Child’s Siblings” written by Ranit Mishori.  I am 18, a senior in high school, and the younger sibling of a 21 year old brother with low verbal autism.  In the article, Ranit Mishori shares her life experiences growing up with a younger brother with autism.  Mishori ‘s recollections are mostly negative, and she is now a family physician and faculty member in the Department of Family Medicine at Georgetown University School of Medicine.  I was struck by her acknowledgement that children are more intensely affected when their siblings have more severe autism.  What spoke to me the most was her statement that, “Normal sibling rivalry doesn’t work, because it can never be a fair fight.”  This is a fact that isn’t usually stated, and a truth I live with everyday.  Even with my parent’s help, it is a constant struggle to maintain my emotions.  I am still learning to think clearly so I can manage the autism and relate to my brother in all situations. 

In the article, Mishori defined the challenges growing up alongside severe autism.  I was stunned to see someone articulate the problems we face every day.  For most of my life, autism was defined as hyper-verbal, socially quirky, genius level academic skills, or someone exceptionally talented in art or music.  This perception was so common, friends of mine saying they ‘knew people with autism’ were shocked to see my brother’s low communication, echolalia, and OCD.  However, unlike Mishori, I have many happy memories to reflect on along with the hardships.  I couldn’t help but compare my circumstances as I read her words. 

Mishori talked about “missing out on typical family outings, such as movies, restaurants and NP kissing tower vacations”.  Our mobility as a family has dwindled because of Anthony’s severe echolalia which is very loud, constant, and uncontrollable.  It is easier to stay home than deal with the outside world.  Not everyone has been patient with Anthony.  The stress of trying to keep Anthony’s vocalizations down in order to avoid disturbing anyone outweighs any enjoyment.  Loud places work best.  My favorite family memories are amusement parks, especially Hershey Park in Hershey, Pennsylvania.  Anthony loves thrill rides.  The bigger and scarier, the better.  My mother taught Anthony to wait in line by forcibly holding him in place for an entire summer when he was 9.  She used words they used at school over and over again like “wait your turn” and “stay in line” until Anthony got it.  We wait in line to ride like any other family, so it feels normal.  It’s also noisy, so we feel more invisible.  From far away, no one can tell Anthony is echoing.  We have to watch him every second to keep him safe in a crowd.  However, the fun outweighs the stress.  Knowing there is someplace to relax and connect with my brother makes me feel good. 

Mishori spoke about “being embarrassed to bring friends home”.  While I was never embarrassed about Anthony, I was wary of letting people into my life.  I don’t know how people are going to react to my brother’s autism.   Will they be tolerant?  Will they be judgmental?  Is their perception of autism different from how my brother presents?  I am always afraid that I will let someone into my life that on the surface seems understanding, but will mistreat my brother when my back is turned.  This fear can be so consuming, that it’s preferable to avoid acquaintances and just be alone.  There are only a handful of people I trust will be understanding of my brother and me. 

NP InspirationMishori mentioned “unpredictable and sometimes violent tantrums and outbursts aimed at you”.  My brother has never been violent towards me.  However, Anthony has had disruptive anger jags aimed at no one.  He will scream angry dialogue for hours at invisible characters.  It is frustrating and painful for the whole family.   I feel helpless during those moments.  I get especially angry because my parents have received so little help from the medical community.  They have been rejected by so many medical professionals over the years.  Even the Head of Neurology at the Medical University of South Carolina, who reviewed Anthony’s case, told them “there are no neurological specialists within the state of South Carolina qualified to help.”  My parents didn’t believe that, but they did believe no one wanted to help. 

Mishori described “being expected to grow up faster than you may want to, because you need to be the responsible one”.  My parents did their best to preserve my childhood as much as possible.  Honestly, I feel like I’m in a perpetual state of nostalgia because Anthony still sees me as 6 and him as 9.  I did have to mature more quickly than my peers.  I need to be stable at all times in order to deal with the autism.  We had to work like a team to function as a family.  You have to be in control of your thoughts at all times to keep Anthony cooperative and safe.  I gave up my turn, and let Anthony have more accommodating, but my parents always rewarded me.  For example, Anthony did well at Hershey Park, but he needed transition items all day long.  He always needed something new to hold in his hand to cope with the high stim environment.  My parents would tell me that if I let only Anthony get little things all day long, I could get one big thing at the end of the night.  I looked forward to that.  I felt like it was a reward for my patience, and I felt redeemed for my efforts.  At the time I didn’t understand what all the fuss was about.  I didn’t really understand what autism was.  I just knew that Anthony was noisy and disruptive, and I needed to help my parents.  As long as I was good to Anthony and respected my parents, everything was good – so I did.  

Mishori talked about having “the sense that you come second to your parents, because so much of NP Natalie Chrissytheir time and energy is focused on the one with autism.”  I never felt this way.  My parents worked very hard to balance their attention between Anthony and me.  Granted, the autism was always managed first.  There were times I would get overly frustrated with Anthony’s OCD, and my parents would tell me I just had to deal with it.  There was more emphasis on teaching me to cope with my brother’s autism than dealing with who was right or wrong.  Sibling rivalry didn’t exist, only autism and autism management.  The most extreme example of putting my brother first was giving up my room for Anthony.  As an art student, my parents gave me the biggest room in our house to use as both bedroom and art studio.  Our house had no family room, and Anthony began camping out in the living room and wouldn’t return upstairs.  My mom simply wanted to keep Anthony close to her after he had his wisdom teeth out in January, but that lasted many months.  It was difficult for everyone.  There was no quiet in the house, and it was ruining our quality of life.  No amount of bargaining helped.  It was only made worse by the critical comments we received from visitors that he was still downstairs.  Anthony missed the time when we were little and shared a room together with bunk beds.  He kept going to eBay and finding bunks to show my parents.  Finally, we decided as a family that I would give up my big room to Anthony.  We were given bunk beds so I could bunk with Anthony sometimes.  In exchange, I was given the other 2 bedrooms – one as an art room and one as a bedroom.  I still have stuff in boxes!  I miss my room, but it's nice to see Anthony cherish the moments with me like we are kids again. 

Mishori remarked that “These are all fertile ground for building resentment. And then feeling guilty about feeling resentment.”  Granted, that is a given in any sibling relationship.  Any situation where one child is prioritized over another is grounds for building resentment for the other.  For me, I don’t see any point in resenting my brother.  Autism is still going to be there when I’m done ranting and venting out my frustrations. 

Mishori states that “there is more study of the child affected with autism than the sibling who lives with autism”.  I am honestly not surprised by this.  Traditionally, people researching a medical concern are going to speak with the person affected, or that person’s parent.  In the case of autism, I feel the sibling perspective is extremely valuable to enlighten the public about the condition.  The sibling perspective is that of a peer, not a caregiving person a generation older.  The biggest reason I want to advocate for Anthony is because no one wants to listen to my parents.  I believe the medical community looks at my brother as a lost cause.  They want a success story, so they focus their efforts on the very young.  Meanwhile, my brother has a normal life expectancy, and has needs that are not being addressed.  My parents struggle to get help for him, and I feel like a helpless bystander.  The media tends to portray the majority of people with autism as a novelty of childhood – high functioning, quirky, and disruptive in a whimsical way.  The reality of autism is lifelong impacting communication, sensory integration, and ability to live independently.  Caregiving is necessary into adulthood, and impacts the family globally.  The medical community should extend their focus beyond the very young and simply treat patients with autism.  Even if the goal isn’t a cure, it should at least be improvement.  How can the medical community turn its back on people in need?  How? 

Natalie Palumbo is Contributing Editor for Age of Autism.

Comments

Denise

Wow. I think he thing that struck me most about this article is how high functioning low functioning autism can be. I was reading this to gain insight into my daughter’s experience- but the low functioning kids described are so high functioning I struck out again😕

Angelina

Thank you so much for sharing your heart with us. I, too, am a sibling. My youngest brother has autism, and his diagnosis has changed my life. I really enjoyed reading about your experience, and think you are an extremely well-spoken and insightful young woman. Do you have your own blog? I write at The Autism Onion, if you ever want to get in touch.

Dustin Daniels

I just published a children's book designed for siblings of an autistic child. Understanding Samantha: A Sibling's Perspective of Autism. Its only on iPad for now...https://itunes.apple.com/us/book/understanding-samantha/id591338996?mt=11

JFithen

Methinks "Stephanie BCBA" needs to keep her day job. If vaccines caused autism - which means we could prevent this tragedy in thousands of other children - which means Steph would be out of job. She's just protecting her own.... For some reason the ABA field is overrun with her type.

Every wonder why cancer will never be "cured"? Follow the money.

Sell your shots somewhere else

Matt,
Why do you think we'd be interested in Salon's shilling for the vaccine industry? Salon's ties to vaccine industry interests have been exposed.

http://www.ageofautism.com/2012/03/was-robert-f-kennedy-jrs-deadly-immunity-retracted-from-salon-by-arthur-allens-wife-and-her-brother.html

Raymond Gallup


Dear Matt,

Per......

"Read this article...can we please stop putting all the blame on vaccines. Enough is enough, let's move into the future, and reap the rewards of all that science can do for people with autism.
http://www.salon.com/2011/01/06/jenny_mccarthy_autism_debate/"

As I mentioned before awareness about adverse reactions to vaccines is good. If a parent has a vaccine damaged kid and they aren't aware they could continue to vaccinate their kid until it dies. Are vaccines more important than children dying from over vaccination? Are vaccines to be put up on a pedestal and worshipped more children/adults who are damaged/killed by them? If that is more important, vaccines over the safety of children/adults, than we live in aa insane world. Our priorities are definitely screwed up if that is the case since things and money come before human life.

As an aside, Julie is working full time as an aide in a school for autism and plans on getting a masters degree in special education since what happened to Eric has effected her that much.

John Stone

Hi Matt

I see only the comment from "Kim No-Vac" below relevant to the vaccine issue. As to what you say, can we end the hate campaign against everyone who reports on the adverse effects of vaccine, which warps any scientific objectivity? It's on the principle of don't look at the damage there's a war to win. You pretend the war is against disease but actually it is just about public opinion. Let's face it is a racket.

Matt Tristiest

Read this article...can we please stop putting all the blame on vaccines. Enough is enough, let's move into the future, and reap the rewards of all that science can do for people with autism.
http://www.salon.com/2011/01/06/jenny_mccarthy_autism_debate/

L Land

I came across this article unsure of what I was about to read, but I was plesantly surprised to actually relate to your situation. I am a sixteen year old girl, I have never had a time when my older brother (now 21), was not a severely autistic child. I grew up fast, I had to, and I dont claim to be perfect; I on several occasions have felt anger, jealousy, and pity towards my brother. But I believe growing up with this has made me stronger. I also like you dont invite alot of people over, even if I've known them for years. But unlike you, I often tell people "I have a severely autistic brother, so maybe you should come up with a replacement for "retarded". And on a final note I have given up on movie theaters and other crowded areas, but because of his disability I got to go Curacao, to learn and enjoy dolphin therapy for 3 weeks, and those moments are some of best of my childhood. And I know I am still technicaly a child but, complaining like this Mishori, seems juvenile and a waste of time. Autism is a part of my life, I neither hate or love it, what I do love is my Brother.

Carrie Cooling

Outstanding. I need to share this with my daughter. She's an almost 11 yr old 5th grader, the younger sister of a brother with Asperger's Syndrome, the daughter & middle child of a mother with it. I know it affects her - she is my rock. She is my right arm. She is the one I can count on to help the little one while I try to diffuse Max's meltdown or my own, the one I can count on to do the dishes even though it's not her night because Max has had a bad day and I'm exhausted from fighting with him to do the simplest task, the one I can count on to take care of the laundry while I try and work out dinner and get Max to do his homework, the one I rely on for nearly EVERYTHING that I'm unable to do because I am not 2 people. She is a wonderful girl, I am so proud of her.

Natalie, thank you for giving voice to what I KNOW is a massive struggle for my daughter. Thank you for reminding me that I can't forget her needs. Thank you for telling us what your parents did for you at the amusement park - it gives me ideas for Rachel.

barbara j

Terri, no, most of them won't be okay. You'd be surprised at the number of kids on psyche drugs in every classroom, at the number carrying epi pens and like my son inhalers and spacers. I love it when a "friend" says, "well mine had shots and they're okay", when clearly they are not.I have six, one is okay, enjoying health, and with today's mutated "because of vaccines" illnesses, maybe he won't be okay for long. Kids aren't okay, my sixteen year old's class doesn't have one that I would consider "fine". There is one family in our school that has never taken a vaccine, they are okay.I look at potty training as an example. Today most children are potty trained at three and a half. This is perfectly normal, in our parents day this would have been indicative of a delayed child. No mothers aren't lazy, my unvaccinated child asked to go potty at two. I'm just as lazy with him as I was with the others. He's the one that got too busy to want to nurse and stopped in his twos. The rest wouldn't stop unless I had a new baby and only then because "it tasted funny".Nursing is about development ,as well, and many are nursing into kindergarten , my niece did, and while the mothers are held up as "strange" , it isn't them, it's the children, they aren't moving on properly. Diet, uh huh, I put the same food on the table and yet my ads child eats about five items. For Kim No-vac, I find it interesting that genetic treatment involves replacing a defective gene, that gene is carried by a virus , by design they are doing some incredible things, however, what about an errant gene carried by a virus in these vaccines.Why wouldn't that dna from a pig, or dna from that aborted ,for psychiatric reasons, human fetus go rogue . Am I nuts to think it's possible that these are the causes of the "denovo" genes? Seems like an accidental "stealth" introduction of autism and all of the other vaccine maladies could be possible.

tiredmom

Natalie,

I love your articles! They are so thoughtful, insightful and honest, and reading about your deep love and attachment to your brother just makes my day.

Diane

Natalie,

As always thanks for your insight. Autism doesn't just impact the one with the diagnosis, it truly impacts the entire family! I'm so hopeful that the siblings of all those with autism can continue the fight of their parents when we're all gone. Of course, this being our greatest fear is that who will take care of our kids (regardless of age) when we are no longer here. Resources are already nil, I shutter to think of the future, when the magic bus stops coming when my son reaches 21 (10 short years). He's non-verbal, low-functioning as well - society has nothing but bad things for him without protection.

Terri Lewis

Oh, maybe if some of you "friend" my hubby on FB he would get a clue. He won't listen to me. Or maybe if it happens that 5% and then 10% and then 35% of all children are "on the spectrum," or maybe if the skies opened up and God Himself spoke directly to him.

Nah.

Good friends of ours--who can't hear me either--just got booster shots for their 5-year-old. She's 5 going on 6 and just about to go into kindergarten (a year late). She is a wonderful little girl and I really love her. She's small for her age, I think, and she seems like 5 going on 4 to me, but I just hope and pray that this latest round of shots doesn't hit her the wrong way.

Wonder how that would affect her big sister, too.

I just keep hoping I'm wrong every time I worry about a baby I know getting all their shots and all on time. Of course, most of them will be okay. Mostly okay, anyhow. It's awful to watch when you know how many will be hurt by it.

Raymond Gallup


At.......

http://www.vaclib.org/sites/vap/erics-story.htm#FromHeretoDelaware

Julie, our daughter and sister to Eric wrote the following articles some time ago about her feelings as Eric's sibling.

From Here to Delaware
by Julie Gallup (August, 2005)
and
My Brother Eric
An essay by Julie Gallup (November, 2006)

Julie will be 24 years old on October 22, 2012 and Eric will be 28 years old on January 17, 2013.


A message to Stephanie BCBA per the following statement:

"Kim No-Vac - that is a very dangerous statement. There is absolutely no medical evidence that vaccines have anything to do with autism and the original article written in the UK has been recalled and declared false. Diseases that have been eradicated are resurfacing because children are not receiving vaccinations that prevent these diseases. Vaccines do not cause Autism."

What you are saying Stephanie is dangerous because if there is neurological damage caused by vaccines, a child getting more vaccines could kill the child. There are lots of cases of deaths by vaccines in VAERS. See....

http://vaers.hhs.gov/index

You say vaccines don't cause autism but there are lots of medical articles that link vaccines to autism. In my own case, I have a videotape of Eric from birth that shows he was normal and speech was coming on until he received the MMR vaccine and regressed into autism. Blood work shows he has elevated measles antibody titers and tested positive for myelin basic protein antibodies neither found in normal children.

So Stephanie BCBA you can go on about "safe vaccines", but I know better. Our son, Eric and our family paid the price listening to you people about "safe vaccines". Where do we go to get our son back when he was born normal at birth??????


Benedetta

Oh, I feel guilty.
I wish I could have read this when my two kids were growing up.
I do feel like I put my duaghter second.
There are some good ideas for young parents in your article -- it will help so many people.

Kim No-Vac

Stephanie Boba, (thats how I'm going to choose to interpret your name) . An Italian court begs to differ with you and says autism is caused by vaccine.
A nobel prize winner also differs with you (how many nobel prizes have you got).
The former chief of the NIH seemed to also think vacines caused autism . Many many honourable doctors & toxicologists & former neuro-surgeons think vaccines cause autism (all of them brighter than u) ,some Senators too .
In fact the US government has paid out a hundred times ,that we know of ,in admission of the fact vaccines cause autism .
The evidence is overwhelming , it really is , and I could go on , I have so much evidence to the contrary of your opinion.
But I'm not going to bother , just you make sure to keep all your vaccines fully up to date , for yourself and everyone in your family , and we will help you in every way we can when it all goes tragically wrong . You'll get next to no help from mainstream medicine except "Autism is a genetic life-long untreatable condition" which of course is the biggest lie in history . The vaccine holocaust is currently running at somewhere between 1 in 38 (south korea) to 1 in 88 (us) depending on whose statistics you believe .
It isnt pretty I can assure you , its carnage , its poison.
Vaccines and the people behind them , have attempted to murder our children , no doubt , we can no longer afford to be afraid of any threat ,intimidation , or shouting down .
Even the UK courts , as suspect as they are, conceded that Walker-Smith had no case to answer about the original 1988 Royal Free work . Its been a bad year for the Pharma Harma crew .

Nora

A new Poll out about autism. Maybe this will make our presidential candidates pay attention.
http://www.autismsuperpac.org/news.php

nhokkanen

"Stephanie BCBA" parrots the robotic jingoistic falsehoods that government promotes and relies on to avoid investigation (and eventual prosecution). For some, the fear reflex is easily manipulated with self-serving slogans and memes.

Natalie, thank you for another fine article. I wish my son could have had a sibling like you.

barbara j

I have a houseful of vaccine injured kids, one on the spectrum ,one with crohn's, one with heart issues, one Kawasaki,one asthmatic. I understand what stephanie is saying, it's very common for us, as consumers, to devour the "opinion of the day" it is similar to politics ,most are going on low information. Truth, there were many scientific studies pointing to vaccines as a cause for many ills, it was just a matter of paying for counter studies overseas, and then "weigh" the evidence. Not much of a trick to throw the scales, dishonest, deadly, immoral, well yeah..but that's the way it works.

For Stephanie, "BCBA," St., with honors

Stephanie, my god, go troll somewhere else. Forget any extra degree acronyms after your name?

Inject yourself with the full childhood vaccine schedule, or if you're too much of a hypocrite coward to do that, I'll settle for the nine doses Hannah Poling received, which the US government admitted caused her "autism-like sypmtoms."

Until you do this, and prove you've done it by filming the process, you have nothing to add to the discussion. You are a liar and a troll.

John Gilmore

Dear Ms. Palumbo,

Thank you for your thoughtful analysis and generosity in sharing your experience as a sibling. I have one child with severe autism similar to your brother's, and I have one child, an older brother, who does not have autism. Your articles help me understand my son who has given up much as a result of his brother's autism. And you write beautifully.

John Gilmore

Laura Hayes

Hi Natalie,

I enjoy sharing your stories with my my 20 year-old daughter and 16 year-old son. Their brother with "autism" (known in our family as catastrophic brain injury from his vaccines), is 18 years old. I have run an intensive ABA program for him for over 16 years now, which has meant tutors in our home for 5-6 days per week for their entire childhoods. Their brother and his needs, our battles and advocacy on behalf of him and others to receive appropriate services, my passion to encourage others to educate before they vaccinate, and having non-family members in our home nearly non-stop have greatly impacted their lives. My husband and I have worked tirelessly to make sure that their needs are met, too. However, they have had to learn that their brother and his needs must often come first, due to necessity, not favoritism. They have grown up knowing that accommodations must often be made for their brother with autism, impacting all areas of family life. These accommodations are not always easy or what they would have chosen. However, they are the norm in our family, my daughter and son have grown up with them, and they have been willing and helpful participants in the constantly-needed accommodations...much like you :)

Despite having an altered and unusual childhood due to their brother's "autism," my daughter and son are two of the most amazing, mature, and compassionate individuals I know...again, much like you :) Having a sibling with autism in the family seems to greatly reduce selfishness, pettiness, and egocentricity in the other children.

Your candid writing is inspiring, and we hope you continue writing from the much-needed perspective of a sibling. I will pray that your parents find a doctor who is willing to take the time to help your brother with his medical needs. Stay encouraged, Natalie, and keep speaking and writing your wonderful words of truth!

Stephanie BCBA

Kim No-Vac - that is a very dangerous statement. There is absolutely no medical evidence that vaccines have anything to do with autism and the original article written in the UK has been recalled and declared false. Diseases that have been eradicated are resurfacing because children are not receiving vaccinations that prevent these diseases. Vaccines do not cause Autism.

Terri Lewis

Natalie,

Thank you so much. I'm giving this article to my two daughters to read, since they will certainly find it interesting and relevant. Their brother--my son--has autism, and although his problems have been considerably less severe than the challenges your brother faces, Noah has not just been the "quirky genius," as their father likes to stress.

My husband's emphasis on "the positive side" of autism spectrum disorder has left the rest of our family--including our son--confused and lost. We certainly know that Noah has many, many wonderful qualities: sweet by nature, very smart, funny, clever, and empathetic. Also a wonderful writer and poet. These qualities, by definition, are not a part of his autism, nor is his autism intrinsically a part of him, as some very mildly affected individuals like to claim.

He also continues to struggle with OCD-type behaviors, argumentative (and occasionally physical) outbursts, and sensory issues that seem to come and go with his overall stress level. These are a part of his autism, and none of these are positive.

We have had good times as a family and we have had horrible times.

My husband chooses to live in denial over the truth that he witnessed, and at one time acknowledged: our son was harmed by vaccines, to a great deal, and the MMR was the last straw. This is also confusing and upsetting to me, and is certainly confusing to our daughters.

Thank you for the work you do here. It is more important, and will reach further, than you may ever know.

Kim No-Vac

So many sad stories , and yet so many of the stories are the same.

It’s very hard to imagine "vaccine Derived Autism" is just a simple accident when it has occurred on such an industrial scale . Looks like genocide by stealth to me .

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