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Suffering Stupidity

NP Anthony

By Natalie Palumbo

I am 18 years old, and a rising senior in high school.  I am the younger sister of a 21 year old brother with low verbal autism.  Anthony just aged out of special education in June, and is now home full-time with my mother.  I just spent a wonderful four weeks away attending precollege at the Ringling College of Art and Design.  I want to make visual effects and animation my career and Ringling is my first choice for college.  This experience meant the world to me and helped me prepare for my future, which includes caring for Anthony in our later years as brother and sister. 50_cent_shirtless_tattoos_poster

As with every experience in my life, Anthony’s autism is never far from my mind.  During my free time at precollege, I stumbled across an article in which the rap artist ‘50 Cent’ used the term “autistic” to insult a follower of his on Twitter.  To add to the degradation, he posted, “I don't want no special ed kids on my time line follow some body else.”  Shortly after that, there was an MSNBC report on the theatre shootings in Aurora, Colorado at the midnight showing of Batman.  Joe Scarborough of MSNBC, while discussing the young suburban gunman, stated that, "these people  are somewhere, I believe, on the autism scale."  Reading these statements made me cringe to think that these influential people reach a large audience, and used their status to further this kind of ignorant chatter.  Even though both men publicly apologized, the damage was already done. 

I have noticed a trend among younger entertainers to use the term “autistic” as the new R-word.  As it  has become socially unfashionable to use the term “retarded” as a negative descriptive, the term “autistic” seems to be taking its place.  I have heard internet personalities refer to someone as “autistic” when they want to insult their intelligence or mock their behavior.  I live in a world where it is close to impossible to get proper help for my brother, and now his condition is being trivialized to being nothing more than a term used to insult.  I fear the word autism will become as meaningless as current slang.  With the epidemic growing, this is especially troubling to think no one will take it seriously.  I face a lifetime of being a caregiver for my brother and therefore social attitudes and trends affect my life. 

Celebrities have more impact than ever with the 24 hour power of the internet and social media.  The trivialization of autism is impacting my generation.  I have noticed it in the terminology of my peers.  Shocking, thoughtless, and insensitive comments about special needs are masquerading as edgy and bold.  I hear commentary that imitates trendy social attitudes, and it feels fake, harsh and irresponsible to me.  Witnessing this trend makes me feel isolated.  Twice at precollege, I was faced with the choice of holding in my feelings when I heard thoughtless chatter or expressing my concerns and risk ridicule.  Both instances occurred during mealtimes when precollege students were expected to bond and socialize. 

In the first occurrence, I heard a male student remark with laughter about a girl with autism who had psychological damage and had suffered sexual abuse.  Without hesitation, I responded angrily stating that my brother has low verbal autism.  With my upset obvious, he quickly explained that he was talking about a character in a movie he had seen.  He looked genuinely concerned to have offended me and his expression of genuine remorse prompted me to apologize to him privately for misunderstanding him.  I explained that most people are offensive with no remorse and he responded with sincere understanding.  While I was happy to see a rare demonstration of humanity, I felt exposed and needed assurance from home that I had acted responsibly. 

Mean girlsThe second occurrence didn’t end as compassionately.  I had made a humorous observation that I was the only one at the table without a Smartphone.  One girl remarked that I was a “special snowflake” which was meant to be a playful insult.  Even though she had not meant to offend me, the significance of using the term “special” as an insult was not lost on me.  I cautioned her that using the word ‘special’ as an insult in social situations could offend someone and explained that I had an older brother with special needs.  She casually remarked that her uncle had special needs, and she makes jokes all the time.  My heart sank and I was speechless.  No one seemed to notice how upset I was.  I simply left the table with no explanation.  I did not know how to relate to someone that could make special needs jokes while having a family member with special needs.  Again, I had to reach home for guidance.  My mother advised me that the population of people with special needs is just as diverse as any other population.  She too had made the mistake of assuming that everyone would share the same level of sensitivity only to find out she was wrong.   My mom told me I didn’t have to advocate for my brother and expose my privacy in every social situation.  She NP Heart's Desirereminded me that I had better ways of expressing my devotion to Anthony and that I should make the most out of my precollege experience while I was there. 

I can’t relate to a “go along with the crowd” mentality that dehumanizes my brother.  I end up feeling alone frequently, but I am alone for the right reasons.  I could ignore my responsibilities toward my brother to imitate behavior and make acquaintances, but it would feel wrong.  The dismissive attitude toward autism is at best, fleeting, and at worst a prevailing attitude – but my devotion to my brother is lifelong.  I am not immune to thoughtless banter.  I cannot sacrifice my integrity for shallow acceptance. 

Calling all siblings -- please share your thoughts.  Our voices are unique, and they matter.

Natalie Palumbo is Contributing Editor to Age of Autism.

Comments

Anonymous

You don't want to fit in with the “normal” crowd, but you also feel left out and alone.
You don't want your “autism” seen as a problem and get lots of attention, because it isn't that much trouble, but you also say it is a struggle to live with and that it needs special attention.
You say that autism is a gift, or a curse. You say that you are like everyone else, but you are not.
You didn't know you had autism and could live without it your whole life.
What are you really?
What is autism really?
Why do you accept people to tell you who you are, giving you a name tag so that the world can make fun of you?
You are just freakin weird, a bit dumb, sensitive and cowardly like most people are.
You are normal, and can live normal, but you choose to struggle more.

Hadia Khan

Thank you Natalie for approving my post. Your story is 100% my story and I am very happy to have come accross this website and hence you :). I will keep you and your entire family in my prayers. Please keep the good work up :)

Hadia Khan

The reason I am posting here is my active request to the show business to stop using autism as a notion to use in their subjects to attract more audience. For example, Rain man and Mozart and the Whale. The term Autism was used to create more ‘drama’ in the movies but had less or nothing to do with either autism or autistic people or their families. Similarly, the recent portrayal of autistic people in a few bollywood movies was heart breaking as it was used more in funny terms to make people laugh. This is very hurtful to families like ours. It is not OK to make our hardships and challenges a subject of entertainment. I am sure other such families would agree that our love towards the autistic family members is much more than usual.

Being a sister of a 19 year old Autistic boy I am naturally very much concerned about him and the emotional impact he has on the rest of my family members specially my parents as one would expect. This post is a request to the showbiz to highlight the hardships of a family with an autistic member and not just autism or the person with this disorder.

Living with an Autistic person, I have naturally been intrigued to watch documentaries and movies related to Autism. Sadly enough, it has always seemed to me that the movies were made more to show ones creativity in order to write, produce, act in or direct a successful movie rather than portraying and emphasizing on what Autism actually is all about. I truly believe that the directors or writers of such movies have got no idea about the hardships involved in our daily life. The theme of most of the movies does not revolve around Autism as a condition but has usually been used to make the subject of a movie ‘more interesting’ hence a pure means of attracting a bigger audience. At least to my knowledge no such big budget movie (like an OSCAR-WINNING DRAMA FILM “RAIN MAN” in 1988) has ever been made to emphasize on the problems faced by a family with an autistic member or how it actually feels like to have such a member in the family. LOW BUDGET MOVIES GO UNNOTICED AND HENCE THE FACTS ABOUT AUTISM AND SUCH FAMILIES. Movies are “entertainment” and AUTISM IS NOT AT ALL “ENTERTAINMENT”. That’s a mental disorder and none of the illnesses is entertainment, not just autism. All sorts of disabilities deserve to be recognized and respected and not used for entertainment purposes which would otherwise be disrespectful towards such families like ours.

It requires a huge deal of responsibility to take care of an autistic family member, and in this process such families become very less sociable. This is not understandable for the extended family or friends. It is common for them to believe that we make our autistic brother an excuse not to visit them and not to let them visit us. They simply don’t understand the extent of love we feel for our brother and hence the deeply felt pain caused by emotional distress when we see him in pain especially when he cannot express his feelings which makes him frustrated and in order to take his frustration out he brutally beats himself with boots, specially his face, hits his head against the wall so hard that it starts bleeding, bites his hands and when we try to stop him he starts hitting and beating us: brothers, sisters and specially parents. NOW HOW ON EARTH CAN ONE ROMANTICIZE THIS ILLNESS?

Dear ShowBiz please help us make our autistic family members’ life and our lives better. Otherwise, please don’t ridicule us by relating something as serious as autism to entertainment.

I am sure families like ours would really appreciate a movie with its sole purpose of portraying what Autism actually is and what we go through as a family and not a movie just using the notion for attracting a more audience. We would like the writers/directors/producers/actors to make a movie that shows what autism is, how autistic people behave, how such people can be dealt with, how to make their lives comfortable and what we can do to make them feel a part of a normal social set up. While I can understand that there are several documentaries out there about Autism, I do believe however that movies are watched by a wider audience, as well as they are much less intense hence much more effective as opposed to a documentary. It will be much more efficient in spreading the awareness to a wider audience about autism and the struggle faced by their families.

https://www.facebook.com/pages/Stop-Romanticizing-Autism/373243612771420#!/pages/Stop-Romanticizing-Autism/373243612771420

https://twitter.com/AutismAndShowBz

Marlana

This was a great article. I also become very angry when people tell jokes about special needs individuals. They think nothing of it. Sometimes I wish people could be put in the shoes of someone that has an intellectual disability for at least a week and then see whether they would still think the way they do.

Sarah Foreman

This was a wonderful article and I commend you for writing it. You have a lot of strength and wisdom. It is very hard to stand up for what you believe in and very often you do feel like an outsider. But you are not alone. I've also noticed this alarming trend. In just this month I saw two movies that illustrate this phenomenon, ’21 Jumpstreet’ and ‘Salmon Fishing in the Yemen’. In ’21 Jumpstreet’ autism was used as an insult; to belittle one of the main characters. In ‘Salmon Fishing in the Yemen’, there was a joke regarding individuals with apergers, which implied that people with aspergers can’t have their feelings hurt. Both movies saddened and angered me. You’re doing a great job at raising awareness. You're brother is blessed to have such a great sister. Keep it up!

Tim Kasemodel

Natalie,

As a dad, thank you. I asked my 17 yr old son to read your story and respond about his life with his 15 yr old brother. He may or may not respond, but I wanted to share my own observations.

My son John deals with Thomas in his own way and we appreciate that he fully understands what is expected and how to explain it to friends.

He is now a senior in High school this year. His brother has never been able to even attend public school due to the severity of his autism, bowel disease especially. The problem is that with present day "politics" John is not willing to bring forward or even continue any conversation that brings about discord. It took him 10 years to have more than the five or six friends that "understood" Thomas. Girls were even more of a challenge for him to believe they could possibly understand, but they have.

The fact is, he is reluctant to bring up autism because it brings into so many factors, such as of medicine, right / left politics, and even the career backgrounds of his friends family members.

He recently mentioned a situation when two of his friends, both girls, were at our home when his brother was home and undressed. They asked about his autism and he explained what he knew about what he learned about vaccine injury and mercury in vaccines. This took a long time, so when one friend said she was told "now they took mercury out of vaccines so it was all good", he just left it at that and decided it was not worth the further discussion.

Natalie, this I understand is a generational fight and unfortunately you and my son John are staring into a battle you did not choose, nor will you deny, but battle you will.

Because it is in your heart, and all of us, as parents of the misunderstood autism generation, are blessed by your passion.

Thank you so much.

Stephanie W

A standing ovation for Natalie. You are an exceptional human being.

Julie

Dear Natalie, I am sure you weren't the only person at that table who found that girl's comment offensive. When you stand up for yourself and your brother it will give heart to those who have less courage.

Keep following your heart.

Kristi

WOW, this young lady is amazing. Wisdom beyond her years and an ability to express it verbally that most never acquire. My advise to her is to thine own self be true. I know her Mom meant well...maybe she wanted to protect this fine young lady from being 'burdened' by the ostrisization that many with a special needs member in their family feel. But she wants to be at peace with herself and that is the way to go. I wish my daughter had a sibling like this one!

Madvocate

Kelly,
Do you think people who make racial slurs or anti-semitic slurs should also not be called on their behavior, so as not to expend energy getting upset at them?

Jenna

"You may not think you can reach it, climb anyway,
You may not think you'll be heard, speak anyway,
You may not think you can change things, try anyway."

-Maya Angelou

Thanks for speaking up, and don't ever doubt that you have done the right thing.

Taximom

Natalie, at 18, you have more wisdom, sensitivity, and maturity than most of the adults in this country.

Thank you for a beautifully written and brilliant article.

John Stone

Natalie

This was very well said. It's a constant battle, and our modern era has in some ways been better and respecting disability and difference than previous generations, but it slips very easily and I find in London we are going back to seeing the limbless begging on streets: perhaps soon we shall see the "freaks" back on the fairground. Callousness re-asserts itself far too easily.

I think such trends are not just about autism. I remember c.1999 a Sunday Times journalist announcing that not enough people were humiliated on TV but this was all about to change as an exciting new breed of reality TV shows in which ordinary people were to be reguarly humiliated were about to be introduced. This was some kind of deliberate act to corrupt a generation for profit, and you could see easily the continuity between this kind of thing and Abu Ghraib just a few years later.

Of course, that was a time of relative plenty but the danger is that widespread hardship can make people more hard-bitten and cynical. Another thing we are witnessing in the UK, and you also probably have is benefit agencies whose job it is to dispossess the sick and disabled for profit. First of all they introduce absurd criteria, and then those that don't meet them precisely are dismissed as scroungers and cheats - something which suits our generation politician and is a way of combining insult and injury to those already disadvantaged, and feeds a certain kind of populist rhetoric in the media. You always hope society will rise above this kind of thing but it is perpetual fight for justice and decency, to which you have just made such heartbreaking contribution.

John

kelly

What Tricia said and this: The more energy you spend getting upset at these people is less you have to positively develop your own life and that of your brother's, and your family and true friends. You can't (and won't) force people to get past their own insecurities. The old mom's schoolyard bullying advice that "People only make fun/lash out/hurt others when they feel bad about themselves or have insecurities" sounds so simplistic but I'm still learning that this applies all through life (I'm 41!). By staying focused and not letting yourself get dragged into their mire, you will be an example of how to live a meaningful life. By being an example, you will attract the right people to bring into your life, like moths to a flame. Quality not quantity. Quality goes a long way. Think of the revolutions started by just a few... the right people caught on. :) Chin up.

Jake Crosby

Natalie,

What you just wrote was in desperate need of being said. Thank you.

Madvocate

Natalie,

I don't blame you one bit for your reaction to the young man who laughed about the autistic girl who had been sexually abused. The fact that she's a fictional character doesn't make his response okay. Fictional characters are based on real people. I'm sure you raised his consciousness as well as that of those around him, and he'll be more careful in the future.

Looking up "special snowflake" online, I found this. http://www.urbandictionary.com/define.php?term=special+snowflake

I think the problem is that "special" has become such a widely-accepted euphemism for impaired that it's hard to think of it meaning anything else. But the slang term "special snowflake" probably came from the original definition of "special" which is unique - like a snowflake. I have a feeling her comment was not derived from a reference to special needs, however I completely understand why you responded the way you did. During your lifetime, "special" has come to mean "special ed/special needs" and little else.

But there are humorous uses of the word "special" that are not meant to mock those with special needs. SNL's Church Lady comes to mind -
http://www.youtube.com/watch?v=xQW_4kowyZ4

My advice is to do what feels right to you. Being true to yourself is never wrong. It's easier to go back and apologize for overreacting than it is to wish you'd said something when you kept your mouth shut.

I admire you a lot for having such courage at such a young age. You're making the world a better place.

Tammy

I worry that people are becoming desensitized to Autism. The rate of autism diagnosis gets higher each year, and they aren't any closer to knowing why. My son is getting older, and I am still fighting for his rights and trying to get appropriate services for him.

Kym Grosso

Excellent post. Loved it and shared! :-)

Sandra M.

Ok, for one, just because April is Autism Awareness month, the families of these beautiful individuals have the awareness 24/7 -365 ... If you want to know more, visit a family who can relate first hand to autism. Live in a home with autism. Bask in the ambiance? SURE!!!!
I am gonna leave my foul mouth on the bench for now, but I have NOTHING good to say about anyone who would make fun of anyone with disabilities. I say step to a persons face, and then see what you get. I know violence isn't the answer, but if someone was to make fun of my son, or do something to harm him, they better sleep with one eye open, and always look over their shoulder. As far as this "go along with the crowd" stuff ... crowds suck. So do people who make fun of others. Nothing but bullies in training. Stay Sweet Natalie Palumbo ... you are a credit to the human race!!!!

Tammie DeMicco

Reading your article made me think of how the future of many people will depend on the love of siblings. I am a life long caregiver, my brother was diagnosed with mental illness at a young age. I work with special needs youth and adults. This summer, one of our students was gunned down for being at the wrong place at the wrong time, another had his place of worship violated with many killed. Thank you for giving me a dose of faith in this time of hate.You are an amazing young woman. Blessings to you and your family.

'Debra

My son is 12 and diagnosed Autistic since age 3. As a mom it was impossible to get half way through your blog without my heart breaking. Your and Amazing young woman and its sad that we have to suffer at the hands of Morons with no sense of decency or common sense. Sad reality is, "IF it doesn't hit home, the severely stupid will never GET IT".
God Bless!

Anne McElroy Dachel

One has to wonder what all the autism awareness is all about. We have a whole month every April when autism is in the news and everyone is told about the disorder. It seems the message is not getting through. Autism is serious and limiting. People with autism deserve our respect and support.

Anne Dachel, Media

Helen

Natalie,
Your post brought me to tears this morning. I have three children, one with autism. Autism effects siblings so deeply that indeed, you will bring about change just by living your truth in your community. I watch my four year old NT daughter protect her twin brother with autism on a daily basis and as she grows, I hope she is just like you.
Enjoy your time in college. That does not mean you accept ignorance, but your mother gave you wise advice. You will have great responsibilites soon enough; Take the time now to enjoy what you've worked hard for as well. Others will no doubt learn from you and become better individuals because of you. You will find friends who are both fun-loving and senstitive to special needs families--and my guess is that you will meet other siblings of children with autism. Thank you for your post. I think you are incredible.
Helen Conroy, The Thinking Moms' Revolution

BESkala

Thank you for sharing. I was crying before I got to the second paragraph! I have an 8 year old son with autism, and an 11 month old daughter. I often wonder about the responsibility I will be putting on my girl's shoulders as she will one day "face a lifetime of being a caregiver" for her brother. This piece gave me a glimpse into her warrior sibling future. THANK YOU.

Chuck Hancock

Good for you, you should be proud. And, super cool that, at 18, you are already keenly aware that your brother (autism or not) wll need you for the rest of his life.

Crystal

You are an incredible young woman, who without a doubt will achieve many wonderful things in life. You are also a shining role model for your entire generation. Reading what you have written has buoyed my faltering hope in society. I wish you and your brother...and all of our families the very best. Thank you for using your voice to share such an important message!

Tricia

Wonderful post. If only adults were as mature, thoughtful and intelligent as you are. You're mother's advice was very wise. It will be difficult to turn the other cheek and you certainly shouldn't in every circumstance. There will come a day when being an advocate in every instance will become exhausting and counterproductive to your own happiness. It doesn't mean your devotion or love are diminished. Just the opposite. It just means you are loving yourself as well. As a new mom to a SN child I am getting a great deal of wisdom from both you and your mother in this post, for myself and my older daughter so thank you for this.

Oddly enough the R word usage (and variations of it) seem to be surging again. Especially on provax FB pages. It's disgusting and heartless.

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