Featured

Does Autism Speaks Speak for Autistics?

Every April many well-intentioned and caring individuals and organizations look to support autism in any way they can. It’s amazing and wonderful to see more and more people aware of autism and willing to assist than ever before. Invariably, many choose to support Autism Speaks, the largest, most well-funded, and most well-known autism research and advocacy organization in the world.

Autism Speaks was established in 2005 by former General Electric and NBC executive Bob Wright and his wife Suzanne, who were inspired to take action when their grandson Christian was diagnosed with autism. To help launch Autism Speaks, Home Depot co-founder Bernie Marcus donated $25 million.

In spite of its overwhelming presence as the voice of autism to the world, many people on the autism spectrum are adamantly opposed to Autism Speaks and its principles. Each April I see repeated posts in online autism groups denouncing the organization. Why would so many people on the spectrum be opposed to an organization that is devoted to autism?

For starters, while many of the people on the board of directors have been affected by autism, no one on the board is actually autistic, yet being in this position gives them a certain authority to “speak” for autistic people. It would be extremely difficult for someone to accurately represent autism when he or she has no first-hand experience of the world as an autistic person.

Additionally, some are opposed to Autism Speaks’s puzzle piece logo, which is universally accepted as the symbol for autism awareness. This image has been used since 1963 when the National Autism Society in the UK adopted an image of a puzzle piece with a crying child as its logo, which many feel  portrays autism as an enigmatic condition that causes nothing but untold suffering. Autism Speaks originally incorporated a blue puzzle piece as its logo, which perpetuates the notion that autistic people are both difficult to figure out and somehow incomplete, and that autism affects males more than females given its blue color. The organization’s current logo continues to use the puzzle piece but has incorporated more colors than before. Many people on the spectrum reject the puzzle piece logo altogether and prefer an infinity loop portraying a wide range of colors to symbolize the diversity of the autism spectrum.

Perhaps the most vocal opposition to Autism Speaks is that the organization has previously condoned aversion therapy, also known as applied behavior analysis (ABA) therapy, which promotes what many believe are abusive practices in an attempt to reinforce  “proper” behavior.

ABA therapy is the use of techniques and principles to bring about a desired behavioral change. ABA behavior analysts began working with young children with autism and related disorders in the 1960s. In its most basic sense, ABA focuses on increasing positive behaviors and decreasing negative behaviors. For example, a child who has trouble sitting at a desk for extended periods of time and prefers to pace around a classroom is rewarded in some way (e.g., verbal praise or a treat) for staying seated for a predetermined period of time. This might not seem so awful to the average person. What parent hasn’t offered ice cream or a piece of candy to their child if they can just remain quiet for the next 30 minutes? To the autistic person, though, being forced to avoid an activity that brings comfort and helps relieve anxiety is anything but comforting and helpful.

Other types of ABA therapy use more aggressive means to inhibit “undesirable” behavior. Children are slapped, verbally admonished, and even given electrical shocks with cattle prods to discourage what the average person would deem as abnormal, such as engaging in repetitive behavior, preferring to be alone, or avoiding eye contact. Understandably, many adults who were subjected to ABA therapy as children believe that this type of therapy is traumatic and torturous not only because of the harsh and abusive strategies used, but also because it is essentially an effort to train autistic people to act “normally” and does not allow them to be their true selves. ABA therapy that is deemed successful makes the lives of the people who interact with an autistic person easier, but degrades the life of the autistic person. There’s a wealth of information available about the controversy surrounding ABA therapy. Here is a great place to start if you’re interested in learning more about opposition to ABA.

Finally, Autism Speaks’s original mission statement included the sentence, “We are dedicated to funding global biomedical research into the causes, prevention, treatments, and a possible cure for autism.” Regardless of the intention, this statement rubbed a lot of people on the spectrum the wrong way by implying that autism is a disease that needs to be eradicated. Many autistic people don’t want to be “cured” of something that is a fundamental part of who they are, and they understandably became resentful to the organization’s mission. In the past, the organization has also called autism an epidemic disease and labeled autistic people as burdens and tragedies. Unsurprisingly, using this type of language has not endeared Autism Speaks to many autistic people.

There is a growing movement among activist adults who don’t think in terms of curing autism, but focus instead on celebrating the neurodiversity of the wide variety of people on the autism spectrum. Rather than changing autistic people so that they fit into a narrow stripe of acceptable behavior in the world, neurodiversity advocates would like to see the world expand its concept of acceptable behavior to include people with autism.

“The idea of a cure for autism doesn’t make sense. Autism isn’t a disease or an injury; it’s a neurodevelopmental disability that shapes our brains differently,” says Julia Bascom, director of programs for the Autistic Self-Advocacy Network, an advocacy organization run by and for autistic people.

She continues, “If I can’t talk, does it make sense to look for a pill for that, or should my speech therapist help me learn how to type or sign instead? Is flapping my hands or intensely and obsessively loving something ‘weird’ or wanting to be by myself the psychological equivalent of diabetes, or is it a natural and beautiful part of human diversity?”

To give credit where credit is due, current information on the Autism Speaks website states that the organization no longer supports aversion therapy (i.e., ABA therapy) or the notion that vaccines cause autism. However, for many on the spectrum, this change in stance has come too little, too late.

While Autism Speaks’s recent policy changes are a step in the right direction and I applaud the organization for listening to its critics and taking steps to improve itself, it still has a lot of progress to make.  I’m hopeful that it is finally beginning to understand things more from the perspective of autistics. In the meantime, I recommend supporting organizations that have always been focused on neurodiversity acceptance, such as the Autistic Self-Advocacy Network and the Autistic Women’s & Nonbinary Network.

Awareness is great. Acceptance is even better.