7 Reasons To Not Support Autism Speaks

7 Reasons To Not Support Autism Speaks

If you want to support autistic people, consider another organization.
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Autism Speaks was founded in 2005 by Bob and Suzanne Wright after their grandson was diagnosed with autism. Since its conception, it has been the leading organization for autism research and awareness. Unfortunately, the autistic community and supporters have expressed dissatisfaction with the organization because of how it spends its money and the way it represents people with autism. Here are some things you should consider before you donate your money or time to Autism Speaks.

1. Autistic individuals do not like Autism Speaks.

This is by far the most important item on the list. Before considering supporting any non-profit organization, it is most important to ensure they are effectively serving and supporting the community they seek to serve. If the majority of people with autism do not feel as though Autism Speaks adequately represents them or serves their needs , it means Autism Speaks does not adequately represent or serve the majority of them. Therefore, this organization does not fulfill its purpose. Period.

2. Autism Speaks caters to parents of children with autism rather than the children themselves.

Autism Speaks remains successful, despite the lack of support from people with autism because it caters to parents of children with autism. I am not saying helping families with autistic children is not necessary and important, but if Autism Speaks only focuses on programming for parents, it abandons the children who are certainly in equal if not in more need of Autism Speaks’ help. In addition, the children are not aware of the problematic nature of Autism Speaks for obvious reasons, but the parents are also not necessarily aware of the problematic nature of Autism Speaks because they are new to the community. This means those who are the most supportive of the organization are those who are not educated about the issues, which is quite disturbing, especially considering that Autism Speaks claims to increase education about autism. On top of that, many families turn to Autism Speaks for education and will only receive the problematic representation of what it is truly like to be autistic that the organization provides. Their scare tactics help keep families grateful for their services and encourage them to continue to use their services. This problematic representation will affect the way these families raise their children, which in turn, could increase stigma. I think anyone should be suspicious of an organization that takes in support from vulnerable families but can not keep the support of less vulnerable or more informed members of the community.

3. Autism Speaks does not allocate its funds to directly help people with autism.

In Autism Speaks' most recent budget report for the 2014 fiscal year, it spent 15.7 million dollars of the 57.5 million dollar total on family grants, which directly aide families and people with autism. They also spent 23 million dollars on employee compensation with many of their board members earning six figures. Moreover, most of Autism Speaks’ budget goes toward research rather than to direct care. Autism Speaks has a history of not allocating its funds to appropriate research. In fact, its symbol, the puzzle piece, was created as a symbol of its purpose; to find the missing pieces of genetic material to establish a connection with autism and genes. This sort of research is problematic because it is part of seeking a cure for autism and can be interpreted as an attempt at eugenics.

4. Autism Speaks seeks a cure for autism.

Autism Speaks declares in its mission statement that it seeks to find a cure for autism. Attempting to cure autism is problematic. At first, it might seem appropriate to find a cure for a disorder “that can cause significant social, communication and behavioral challenges," but this perspective is ultimately rooted in ableism and does not embrace the entirety of the experience of autism. Suggesting that a community should be entirely ameliorated does not recognize the truly diverse social, communicative and behavioral circumstances within the community. Moreover, it suggests that the experience of autism is, inherently, a bad one, and people with autism are second-class citizens. That is not the reality. Since Autism Speaks' conception, prenatal testing has been developed for Down syndrome and has caused a decreasing rate of Down syndrome births, despite many families reflecting positively on the experience of raising a child with Down syndrome, proving that this research has the potential to have a dramatic negative impact on the autistic community. Ignoring the cries from the community to remove this from their mission statement, on top of the research surrounding Down syndrome, proves that Autism Speaks is, at worst, apathetic to the possibility of eliminating the community and at best, out of touch with the community's desires.

At the heart of the issue, this identity should be celebrated by most, or at the very least, by an organization that seeks to represent people with autism.

5. "Don’t speak about us without us.”

Every advocacy organization’s purpose is to serve the population it represents and ensure that this main goal is, in fact, executed. Many organizations will employ members of the population it serves. Autism Speaks does not do this, which means the organization is out of touch with the desires of the autism community. According to the Autistic Self-Advocacy Network, “There are no autistics on their board of directors. There are no autistics in any of their major decision-making bodies.” If Autism Speaks does not even fulfill this base requirement of representation, how can we expect this organization to teach others to treat people with autism like equals if they are not even employable?

6. There are other organizations that help individuals with autism that you can support.

The Autism Self-Advocacy Network, according to their mission statement, “work(s) to empower autistic people across the world to take control of our own lives and the future of our common community and seek(s) to organize the autistic community to ensure our voices are heard in the national conversation about us." The Self-Advocacy Network does not receive the same criticism as Autism Speaks because by putting people with autism in charge of the conversation, the community’s needs are actually being communicated and met.

Paul Robison was Autism Speaks' highest ranking autistic employee before he left the science advisory board. Paul Robinson left his post after Suzanne Wright published the op-ed “Autism Speaks Point of View,” which contained many messages highly offensive to the autistic community. Paul Robison describes in his letter of resignation that he choose to leave, not only because of Suzanne Wright's insulting speech, but also because no one would address his repeated concerns about seeking a cure and the lack of representation while he was employed at Autism Speaks. Robison perfectly summarizes the problems the autistic community has with Autism Speaks with these two quotes.

“There is a great diversity in our community, which means we have a very broad range of needs. Unfortunately, the majority of the research Autism Speaks has funded to date does not meet those needs, and the community services are too small a percentage of total budget to be truly meaningful. We have delivered very little value to autistic people, for the many millions raised.”

“Autism Speaks has done a lot of wonderful things. The organization has a lot of fundraising power and the capacity to do a lot of good, but when it destroys support within its own community, it’s the most counterproductive thing it can do. It’s unfortunate the leadership is out of touch with the community and the language of disability advocacy.”

Cover Image Credit: Pexels

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To All Incoming Freshmen, When You Get To College, Please Don't Be THAT Freshman

I am pretty sure we all know who I'm talking about.

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As we are all counting down the days to return to campus, students are looking forward to meeting new people and reuniting with old friends. And then, there is the freshman.

We have all been there. The eagerness and excitement have been slowly building up through months of summer vacation, all waiting for this moment. I understand the anxiousness, enthusiasm, and insecurities. The opportunity to meet new people and explore a new area is very intriguing. But let's be real, you are here to make memories and get an education. So here are a few pieces of advice from a former college freshman.

1. Don't be that freshman who follows their significant other to college

This is the boy or girl who simply can not think for themselves. The 17-year-old puts their own personal goals and interests aside to sacrifice for a six-month high school relationship. This will more than likely end at an end of semester transfer after the relationship has been tested for a month or two in college life. So if you want to really enjoy your freshman year, make your own decisions and do what is best for you.

2. Don't be that freshman who lets their parents pick their major

"You are not going to school just to waste my money."

This is a statement you might have heard from your parents. As true as it might seem, this is definitely not a good way to start your college years. If you are not majoring in something you can see yourself doing, you are wasting your time. You can major in biology, go to medical school, and make the best grades. But if deep down you don't want to be a doctor, you will NOT end up being a good doctor. When it comes to picking your major, you really have to follow your heart.

3. Don't be that freshman who gets overwhelmed with the first taste of freedom

Yes. It is all very exciting. You don't have a curfew, you don't have rules, you don't have anyone constantly nagging you, but let's not get carried away. Don't be the freshman who gets a tattoo on the first night of living on your own. Don't be the freshman who tries to drink every liquor behind the bar. Don't be the freshman who gets caught up being someone that they aren't. My best advice would be to take things slow.

4. Don't be that freshman who starts school isolated in a relationship

I'm not telling you not to date anyone during your freshman year. I am saying to not cut yourself off from the rest of the world while you date someone. Your first year on campus is such an amazing opportunity to meet people, but people are constantly eager to start dating someone and then only spend time with that person.

Be the freshman who can manage time between friends and relationships.

5. Don't be that freshman who can't handle things on their own

It is your first year on your own. Yes, you still need help from your parents. But at this point, they should not be ordering your textbooks or buying your parking pass. If you need something for a club or for class, YOU should handle it. If you're having roommate problems, YOU should handle it, not your parents. This is the real world and college is a great time for you to start building up to be the person you want to be in the future, but you can't successfully do that if your parents still deal with every minor inconvenience for you.

6. Don't be that freshman who only talks to their high school friends

I know your high school was probably amazing, and you probably had the coolest people go there. However, I believe that college is a great time to be on your own and experience new things. Meeting new people and going to new places will allow you to grow into a more mature person. There is a way to balance meeting new friends and maintaining friendships with childhood friends, and I am sure you will find that balance.

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25 Things Every USF Student Needs To Know ASAP

Raw, humorous and valuable advice for new or already established students.

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Whether you are a brand new college student or you have a couple semesters under your belt, it's easy to get stuck going through the motions without allowing yourself to fully absorb everything that your school has to offer. These 25 students at the University of South Florida share some of their most valuable advice, secrets, and hacks when it comes to getting the most out of your college experience.

Going To The Football Games

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"If I could give a first-time student some advice I'd say to take off of work on Saturday and just go to the football games because they'll regret it if they don't." Ciara G.

Finding Opportunities

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"Read the Note-a-Bulls emails and flyers you see on campus. Sometimes you find a great scholarship, internship, and recreational opportunities." Abigayle R.

Gaining Friends And Losing Friends

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"Remember that some people come into your life for short periods and even though some make your life amazing while others make it awful…they're part of your story!" Ashley J.

Procrastinating

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"Always put school work as a number one priority. I know I sometimes slacked off and waited until the absolute last minute to do assignments my first year. Not only did that stress me out but that work also ended up not being as good as it could've been. Also, take as many pictures as you can because before you know it college is over." Sydney M.

Sidewalk Etiquette

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"If you walk slow, do not walk in the center of the sidewalk." Katie H.

The Squirrels

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"The squirrels get aggressive, just be careful." Alex K.

Doing Laundry On Campus

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"Always check the USF app to see if the laundry machines are in working order, and if you want your money back call, the app for the company doesn't work well…and keep in mind they'll give you a refund, but they will send a physical check even for something as small as a dollar." Megan M.

When In Florida, Do As The Floridians Do

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"Always carry an umbrella because there is a 100% chance that it will rain. Also, buy a rain jacket that can fit over your backpack in order to protect electronics." Sina W.

Dining Dollars and Beer

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"You can buy stuff that is not food from the pod with dining dollars and you can buy beer from the Beef O Brady's with dining dollars after 5 p.m." Carlin I.

Finding Parking

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"Be prepared to play musical chairs, parking lot version." Negin W.

Taking Alone Time

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"Remember to take time for yourself. Whatever that may be, always remember you deserve time for you!" Mary S.

Checking Your Emails Is Important

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"Check your email regularly. This is the only way advisors/faculty can communicate with you. Also, set your mail.usf email to forward to your personal email account if you don't want to check more than one email." Cherie D.

Letting Go Of The Past

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"Nothing from your past matters, not people or things, so don't dwell on it." Cameron H.

Sitting In Someone Else's Spot

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"Respect peoples non-assigned assigned seat. Also, people at USF are friendly so don't be afraid to talk to people and make new friends." Gaby M.

Talking In Class

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"Don't be afraid to talk in class. The class will go by so much better and will be less boring if you help the professor out and say something. Also, be sure to go to peer leading because it helps me so much." Brandon W.

Being Friendly To Your Professors And Classmates

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"Get to know professors as humans and mentors. Be the student whose smiling face they look for in class when they come in. Don't always dive for the empty table if you see others sitting alone. Maybe they need a friend too." Amanda F.

Being Involved On Campus

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"Take advantage of the stuff on campus. Like you pay for it. Do it." Leeland B.

Exercise And Finding Free Food On Campus

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"Join a sports team on campus, you'll get your exercise in and make amazing friends! Also, download the Edi-Bull app to find the free food on campus." Megan K.

Being Anti-Social

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"Go to USF events and just talk to people. That little voice that tells you 'ah people are scary, I shouldn't interact,' almost everyone has that voice in some sort of way so you already have something in common. Also, come to WOW (Week Of Welcome) and so hi to the PALS (Peer Advisor Leaders)." Ishaat Musrur H.

Not Knowing Your Purpose

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"Don't worry about figuring out everything (yourself, your major, your classes, etc) right away. It's okay to be a little unsettled as long as you are working hard along the way." Bonita H.

Sleeping, Eating, And Showing Up To Class

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"Set a structured schedule for yourself. Try to get up and go to sleep around the same time every week day-it makes waking up easier and it's healthier for your body! You don't have to live off of fast food. I know it's easier and all around on campus but try making yourself something- you'd be surprised how easy cooking can be. Also, go to class! Even if attendance isn't mandatory, you're paying for every single hour of that lecture. Better not waste it." Hannah W.

Controlling The Music In The Dining Hall

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"You can control the music in the dining hall using the Rockbox app." Nicole Y.

Figuring Out Where Your Classes Are

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"At least a day before classes start, walk around on campus to find out where they all are and go to your professor's office hours. Especially if it pertains to your grade, but even just for one little question. Get to know your professors." Demi A.

Picking The Best Classes

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"Prepare for the next semester! Try and figure out what classes you need for the coming semester ahead of time so you're ready to get them as soon as you can sign up!" Elizabeth S.

Appreciating Your RA's

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"Get to know your RA! They're here to help you get acclimated and enjoy your time on campus." Gia R.

The number one thing to remember is to have fun and appreciate each moment because these few years will fly by faster than you think. Go Bulls!

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