What is Autism? According to the CDC, “Autism spectrum disorder (ASD) is a developmental disability caused by differences in the brain. People with ASD often have problems with social communication and interaction, and restricted or repetitive behaviors or interests. People with ASD may also have different ways of learning, moving, or paying attention” (Signs and Symptoms). Life can be especially difficult for people on the spectrum. It is important to note that every autistic person is different, and has different needs and wants.
Why are Charities Important? Because of the characteristics of autism listed above, everyday tasks can be more difficult. Learning differences can lead to people on the spectrum not getting a proper education and not being able to get jobs. Those who are more affected by the condition may need consistent one-on-one care. Medical needs can be costly as well. Many families of a child with autism struggle because of these factors. And while this isn’t always the case, recognition and support should always be available to them. Many charities supporting autism with this goal in mind, although some are better than others as you will soon find out.
What is Autism Speaks? Autism Speaks is the largest autism research organization in the United States. It has been claiming to help autistic families since 2005. According to their website, donations given to the organization fund research and services for educators, families, and autistic individuals. The Good of Autism Speaks They try to raise awareness with the claim of “enhancing lives today and accelerating a spectrum of solutions for tomorrow” by supplying information and advocating for increased access and acceptance. They fund research projects, and educate others on what autism is. According to a chart created by AutisticAdvocacy, 27% of funds goes to research (Before You Donate). According to Our Impact, Autism Speaks "promotes the well-being, financial security and equal opportunity for adolescents and adults on the autism spectrum." Beyond the positive mission shared on their website, there are many problems with the organization that prove it in fact does not support people with autism in the way that it may seem. Keep reading to hear more and to learn what organizations to support and why.
The Bad of Autism Speaks
They are not trying to help autistic families:
Autism Speaks has been repeatedly proved to be stretching the truth, as seen in the pie chart above. While 27% of funds go to research, Only 1% of Autism Speaks’ budget goes towards the ‘Family Service’. Autism Speaks spends 20x as much on fundraising, and they spend 48% of funds on “Awareness” and lobbying. Only 1% of funds go to supporting autistic families financially. Clearly, they are more focused on their publicity and making sure to say the right words, as opposed to doing the right things.
They are spreading the stigma surrounding autism:
A few years ago, Autism Speaks published an ad that went viral for its absurdity, entitled “I Am Autism”. Sara Luterman wrote an article about this and explained, “The ad claimed that autism “works faster than pediatric AIDS, cancer and diabetes combined” and ensures that marriages will fail, financial ruin will ensue and that it will ‘rob [parents] of [their] children and dreams.’” (Luterman). If you would like to watch the video to see for yourself, it will be linked here. The organization is using their notoriety to push out extremely harmful and false ideas about autism, including the fact that it will destroy families. “Autism is neither a degenerative nor a fatal condition. No one dies of autism. But the rhetoric in the tool kit made autism diagnosis sound as though a child has died” (Luterman).
They are trying to end autism:
Kaylene George, also known as AutisticMama online, wrote a blog post displaying her opinions on Autism Speaks. She points out a piece of evidence she found, saying, “They are also trying to find a prenatal test for autism, similar to the one that they have for Down Syndrome so that mothers will no longer have autistic babies...And frankly, as an autistic person, I can’t believe an organization that claims to represent me honestly wishes I were never born” (George). Kaylene's words speak for themselves: people with autism are not bad or strange - they are different, and their brains work in amazing ways. For example, autistic people often love paying attention to detail in places neurotypical brains just couldn’t. And for the so-called “advocates" of autism research and family support, trying to get rid of autism by terminating autistic pregnancies entirely is just wrong. They promote animosity, violence, and hate towards autistic people, and claim to “understand” and “sympathize” for parents who kill their autistic kids.
Furthermore, the Autism Speaks logo, which is a blue puzzle piece, is worthy to note. According to Autistic influencer Paige Layle, “The puzzle piece was actually adopted from the National Autistic Society in 1963, it was at first green with a picture of a child crying inside of it. The original creator said this because they thought autism was a puzzling condition… they also thought autistic people could never be happy or have fulfilling lives, and that there was a missing piece of them, and that missing piece was the cure for autism” (Layle). The puzzle piece without a doubt represents a harmful assumption about autistic people.
What to do? What Other Organizations to Support? What to Look for? Is clear that although Autism Speaks may appear to be a well-meaning organization, it comes with many problems. The goal of charities should be to raise acceptance and support through moral methods - if they are truly trying to change minds, they should change their actions. The first step to fixing this problem is to stop donating to Autism Speaks, and tell others not to as well! Charities should be against ABA therapy (an abusive process intended to “drive out autism”), reduce stigma, be led mostly by neurodivergent people, and put most of its funding into directly helping autistic people. If you want to support these missions by donating, other organizations like the Autistic Self Advocacy Network (ASAN) and the Autistic Women and Nonbinary Network (AWNN) have been proven to create positivity and change. Some factors that support this can be seen from the chart below. I highly recommend doing your own research before donating to any foundation.
Final Words
In the end, it will always be your own decision whether or not to support Autism Speaks. However, I believe that if you want to support the autistic community, donating to another charity which shows true compassion and care would be a much better idea. Now that you have the information you need to make a decision, I implore you to educate others as to how to support and raise awareness for autism. Sooner or later, our efforts could change the world!
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