The biggest obstacle that holds back autistic people today is stigma.
By Leanne Libas
One of most challenging journeys that an autistic person faces is self-discovery. It can take many years to eventually accept and love oneself. Throughout the journey, highs and lows will always occur. When my friends and teachers ask me what has been the biggest challenge that holds autistic people back, there are many answers that run through my mind. The difficulty of socializing with others and going through the transition from child to adult would be one of the answers that I could provide. I decided that although those answers hold significance they didn’t make a huge impact in my life. After careful consideration, I came to terms with an answer that I think most autistic people would agree on.
Stigma towards the disabled community is defined as ableism. Ableism is divided into two stigmatas (plural for stigma) that are used on a daily basis: the medical and social models. Within the autistic community, ableism becomes more present as diagnoses of autism increase every year.
The medical model demonstrates how autism is an impairment. It demonstrates how autism is considered as a disease and how an autistic person suffers more than a neurotypical person. For example, when doctors diagnose autism they rely on the spectrum. In order to diagnose a patient, they use screening tools ranging from interviews to observing one’s skills (CDC Screening and Diagnosis for Healthcare Providers). Unfortunately, most doctors construe the autism spectrum through rating the severity of a patient’s autism. This has caused debates in the use severity rating system (Duncan, Jabr). The spectrum is a range of symptoms that an autistic person can obtain; one autistic person will not be similar to another.
The medical model of ableism has been used by renowned nonprofit organizations such as Autism Speaks. These organizations use charity in order to “assist” those who have autism and gain profits for researching a cure. Sadly, 43% of the Autism Speaks budget goes towards questionable advertising (many of the ads portray autistic people and their families as people to be pitied) while only 4% of their budget actually provide families with services (Muzikar, Willingham).
The second type of ableism is called the social model. The social model is established on society and individual perceptions. According to this model, society thinks that autistic people should be normal, not weird and different. This type of stigma had created some unfortunate bullying incidents. In November 2013, a 13 year autistic student named Levi Null was being bullied by his classmates (Pfeiffer). The teachers did not intervene immediately and the perpetrators posted an online video of the incident. The classmates of Null eventually apologized for their actions, but this incident should have never happened in the first place. Regardless of having a disability or not, no one should be bullied. The teachers should have prevented this rather than let the child “defend” himself. It’s sad that no one helped Null out, yet I hope that the perpetrators have learned their lesson.
Aside from the models of ableism, the autistic community hears through media messages we are burdening everyone, we can’t tell a lie because we’re honest, we can’t flail our arms when we are over-stimulated, we need to be “cured”, etc. We’re patronized by those who don’t understand. This causes ourselves and others to undermine our capabilities. But somehow that doubt in our minds will diminish and we become stronger than ever. It takes time but we will become stronger through adversity.
According to the Centers for Disease and Control Prevention, 1 in 68 children are diagnosed with autism. Not every child will grow up and gain self-confidence. Some will never get to live and see what their autism has to offer. If this stigma continues, it will be detrimental for future generations ahead and perceptions may become worse.
Throughout all the adversity the autistic community faces, there are those who will always persevere for their rights and equality. Whether it’s defending themselves through social media or giving advice, the community contributes to making a change one step at a time. Facing ableism has made me develop some tough skin. Without the stigma that I had to face, I wouldn’t be the person I am today. Although words can hurt, what matters is avoiding negativity, proving others wrong, and gaining support from others.
Leanne Libas wrote this piece for a scholarship for the Avonte Oquendo Memorial Scholarship for Autism. Unfortunately she did not win the scholarship. That’s another story. The topic that she chose for the essay was: What do you feel is the biggest obstacle holding back people with autism today? Leanne Libas has the most popular blog ever on the Art of Autism website: Breaking Out my story.
Duncan, Stuart, “Low Functioning Autism vs. High Functioning Autism in 2012.” Autism From a Father’s Point of View. Word Press, 10 Jan. 2012, Web. 25 July 2015.
Hughes, Virginia, “Autistic People Spark Twitter Fight Against Autism Speaks.” BuzzFeed. BuzzFeed Inc., 23 Feb. 2013, Web. 22 July 2015.
Jabr, Ferris, “Redefining Autism.” Scientific American Global RSS. Scientific American, a Division of Nature America, Inc., 30 Jan. 2012, Web. 25, July 2015.
Muzikar, Debra, “Autistic People, Parents and Advocates Speak About Autism Speaks.” Art of Autism. 30 Apr. 2015. Web. 24 July 2015.
Pfeiffer, Eric. “Iowa Parents Defend Bullying of Autistic Teen.” Yahoo News! Yahoo-ABC News Network, 20 Nov. 2013. Web. 27 Sept. 2015.
Willingham, Emily. “Why Autism Speaks Doesn’t Speak For Me.” Forbes. Forbes Magazine, 13 Nov. 2013. Web. 22 July 2015.