April signals blue ribbons flapping in the wind and a little blue puzzle piece in support of Autism Speaks. However, there have been increasing demonstrations of concerns around the organization being so readily supported on campus.
Autism Speaks is Alpha Xi Delta’s philanthropy, and the sorority hosts events and tables as part of National Autism Awareness Month. Members of the sorority have been approached by students who do not support Autism Speaks’ controversial image, and counter-Autism Speaks flyers have been posted beneath those in support of the organization.
Junior psychology major Marleina Robson, of Jacksonville, Illinois, and sophomore computer science major Alexandra Norris, of Lebanon, Illinois, said they believe the sorority has the best intentions in mind but may lack information in supporting Autism Speaks.
“Honestly, with the sorority on campus, I think they have the best intentions, and they want to help, but so many people don’t understand what Autism Speaks is really doing, and I think if they truly did their research, they could find a better organization to stand for and raise money for,” Robson said.
One of the most common complaints about Autism Speaks was the use of the word “cure” in their mission statement. In 2016, the mission statement was changed to exclude it.
According to junior biology medical sciences major and president of Alpha Xi Delta Kelsey King, of Morton, Illinois, the mission statement was changed to clarify some misconceptions.
“They’ve taken out the word cure because they’re not trying to get rid of people with autism, they’re trying to help them be able to live their life more independently to the best of their ability, whatever that might look like for them,” King said.
While the removal of the word “cure” can be seen as a step in the right direction, sophomore psychology and sociology major Mahdi Gourdine, of O’Fallon, Illinois, who is a member of the autistic population, said the stigmatization of people with autism is still present in the organization.
“I don’t support them because for a very long time, going up until a couple years ago, they supported the idea that there was a cure for autism, and even today, they still support a message that having autism makes somebody a personal burden to their family and friends,” Gourdine said. “This supports the stigmatization of people with autism, so that’s the main reason why I do not support them as an organization.”
Norris said she has personally experienced the harmful effects of stigmatization. According to Norris, Autism Speaks perpetuates myths such as the idea that people with autism don’t experience empathy. Norris said the stigmatization can lead to burnout.
“Everyone does and can experience burnout. It’s a little bit different for autistic people, because we sort of experience things a little bit differently,” Norris said. “So, [neurotypical people] could go on a vacation or take a break. For us it’s a lot more difficult. We don’t take a week off and we’re fine. We go through a process of getting through it. It can take months to get through it.”
Gourdine said Autism Speaks’ support of Applied Behavioral Analysis therapy is one way in which the organization continues to support the stigma against people with autism.
Autism Speaks claims ABA therapy can help reduce problem behaviors and aid communication, language and social and motor skills, as well as other things. However, the fact that ABA is based on changing behavior raises concerns for some.
“ABA is controversial because it has historically and even today been used as conversion therapy, which, if effective, changes a person’s personality, and that’s not really acceptable,” Norris said.
Norris cited how researcher Henny Kupferstein found in a study that nearly half of respondents who experienced ABA therapy met the diagnostic requirements for PTSD.
While Robson does not support Autism Speaks, her viewpoint of ABA therapy is positive. Robson was first exposed to the therapy when her sister with autism used it to become more independent, which sparked her interest in it.
“My sister had ABA therapy in-house, so I knew a little bit about it, like I’d see her with her therapist,” Robson said. “ [The therapist] would always make sure she knew how to brush her teeth and made sure that her morning routine was good so Mom didn’t always have to watch her every single step. I saw how much my sister grew from it … she was so happy that she became independent.”
Now, Robson works at Hope Autism Clinic as a behavior technician, and she aspires to be a behavioral analysis clinician.
According to a flyer from autisticadvocacy.org, Autism Speaks’ budget from 2017 only allocated 2 percent of their budget to Family Service grants, which go directly to families affected by autism.
King said she asked about this concern when she spent a week at Autism Speaks’ headquarters in Washington, D.C. over the summer. She was told this allocation is to better serve more families through other means, such as lobbying for insurance to cover the costs associated with autism.
“The way that those work is that there are emergency-type grants … They’re able to give out some money on a very limited basis, but they aren’t able to give every family in America that needs financial help that is affected by autism money because the impact that they’d be able to give would be so minuscule,” King said. “That’s why they are so focused on making an impact with advocacy, where they can change insurance to better help every family, so it’s like everyone is being impacted instead of just being able to give one family some money.”
Norris plans to host a protest during the Autism Speaks’ Glow Blue Race on May 5 at the Enterprise Pavilion in Shaw Park in Clayton, Missouri.
Norris said she hopes her protest will inspire others to learn more about Autism Speaks and possibly donate to the Autistic Self Advocacy Network instead.
For more information on Autistic Self Advocacy Network, visit https://autisticadvocacy.org/. Students may also be interested in Autistic Women & Nonbinary Network. More information on AWN can be found at https://autisticadvocacy.org/.