7 Reasons To Not Support Autism Speaks

7 Reasons To Not Support Autism Speaks

If you want to support autistic people, consider another organization.
37791
views

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

Popular Right Now

Sorry Not Sorry, My Parents Paid For My Coachella Trip

No haters are going to bring me down.
123520
views

This piece is intended to be a satire of an experience at Coachella.

With Coachella officially over, lives can go back to normal and we can all relive Beyonce’s performance online for years to come. Or, if you were like me and actually there, you can replay the experience in your mind for the rest of your life, holding dear to the memories of an epic weekend and a cultural experience like no other on the planet.

And I want to be clear about the Beyonce show: it really was that good.

But with any big event beloved by many, there will always be the haters on the other side. The #nochella’s, the haters of all things ‘Chella fashion. And let me just say this, the flower headbands aren’t cultural appropriation, they’re simply items of clothing used to express the stylistic tendency of a fashion-forward event.

Because yes, the music, and sure, the art, but so much of what Coachella is, really, is about the fashion and what you and your friends are wearing. It's supposed to be fun, not political! Anyway, back to the main point of this.

One of the biggest things people love to hate on about Coachella is the fact that many of the attendees have their tickets bought for them by their parents.

Sorry? It’s not my fault that my parents have enough money to buy their daughter and her friends the gift of going to one of the most amazing melting pots of all things weird and beautiful. It’s not my fault about your life, and it’s none of your business about mine.

All my life, I’ve dealt with people commenting on me, mostly liking, but there are always a few that seem upset about the way I live my life.

One time, I was riding my dolphin out in Turks and Cacaos, (“riding” is the act of holding onto their fin as they swim and you sort of glide next to them. It’s a beautiful, transformative experience between human and animal and I really think, when I looked in my dolphin’s eye, that we made a connection that will last forever) and someone I knew threw shade my way for getting to do it.

Don’t make me be the bad guy.

I felt shame for years after my 16th birthday, where my parents got me an Escalade. People at school made fun of me (especially after I drove into a ditch...oops!) and said I didn’t deserve the things I got in life.

I can think of a lot of people who probably don't deserve the things in life that they get, but you don't hear me hating on them (that's why we vote, people). Well, I’m sick of being made to feel guilty about the luxuries I’m given, because they’ve made me who I am, and I love me.

I’m a good person.

I’m not going to let the Coachella haters bring me down anymore. Did my parents buy my ticket and VIP housing? Yes. Am I sorry about that? Absolutely not.

Sorry, not sorry!

Cover Image Credit: Kaitlin Harasta

Related Content

Connect with a generation
of new voices.

We are students, thinkers, influencers, and communities sharing our ideas with the world. Join our platform to create and discover content that actually matters to you.

Learn more Start Creating

10 Lab Struggles All Students Can Relate To

From the hours spent on pre-lab, in the lab, and post-lab, lab takes up so much time and energy.
312
views

For all pre-med students (and anyone who takes a physical science class), you become immediately familiar with labs. But the labs in college are nothing like the trivial, simple, low-stakes labs that you completed in elementary, middle, and high school. Nothing compares to the brutal, rigorous, complex labs that you will endure during your years of college (except maybe brain surgery itself).

1. I don't want to go.



We all think it. We all say it. It's an every week sentiment, not just a once in a while feeling that you get with your other lectures. Walking to lab is like walking to your prison sentence.



2. Four hours is a crazy long time.



Some surgeries are shorter. Let's be honest-why are these labs so long? No eating, drinking, going to the bathroom, or sitting...is that even legal?



3. I am going to be efficient and productive.



My lab partner and I will read over the procedure several times, divide up the work, and be out of here in no time. Ideally, I want to be out of here in three hours max. Okay, more realistically it will be in 4 hours from the start time.

4. Why can't we sit?



But really, I still don't understand how we can be expected to stand and think for so long. The length of the lab itself is brutal enough to endure, but the fact that you don't get to sit means for sure that the post-lab grade is going to suffer.

5. I should drop the class.



I have to do this next week? And the week after? I don't think I'll ever take a class with a lab component ever again. r?

6. Does anyone else look like they know what they are doing?



The lab partners across from us look confused too, right? Or are we the only ones still on Part 1 of the experiment?

7. I don't care how I do. I want to get out of here as quickly as possible.



Whatever grade we get at this point, it doesn't really matter. I just need to get out of here. Plus, they drop the lowest grade, don't they?

8. Does my lab partner understand what we're doing...because I don't.

We haven't started the post lab, or done the calculations. Which part do I get, and which part can my lab partner figure out? The clock is ticking and my feet hurt.

9. Are all of the other groups leaving? Where did everyone go?

Oh shoot. Why did it get so quiet? Are they leaving too? Man, I've got to get out of here. My goggles are fogging up and giving me a headache.

10. Wow, these goggle marks are hideous.



These are going to last for at least another 3 hours. Well, at least I get to leave...and do this again next week.

Cover Image Credit: Wikimedia

Related Content

Facebook Comments