Author note: For me and so many other people who are autistic have complex feelings about April because it is supposed to be a month about celebrating being autistic but is swamped by organizations like Autism Speaks that use fear tactics to view us as a tragedy by events such as Light It Up Blue.

Community members have mixed feelings around campus about leftovers of the controversial Alpha Xi Delta sorority for advocating for the organization Autism Speaks.

“Autism Speaks sucks!” said Finn Keil, a 20-year-old autistic UNC Asheville student.

 Keil said Autism Speaks continues to be a controversial organization because of its ideologies.

“They are the majority of most of the misconceptions of Autism in the media as well as in pop culture is because of them,” Keil said. 

The campus needs to be careful about visual representation of this, said Ann Harris, an education specialist from Asheville who works with many neurodivergent clients.

“My influence on the organization is through my students and they do not feel represented,” Harris said, talking about her students’ feelings on Autism Speaks.

According to Keil, there are better companies than Autism Speaks.

“Maybe students really don’t know the symbol. I think the student population, the whole campus community, doesn’t really understand disability as disability rights,” said Heidi Kelley, a Professor of the UNCA Anthropology department.

An infinity sign is a better symbol for autism rather than the puzzle piece, Keil said.

“Companies and organizations actually run by people on the spectrum, one of the good indicators is if they use a puzzle piece as part of their logo, they are not a good representation, because the puzzle piece is not only outdated but not something people have chosen,” Keil said.

Their relationship and partnership with Autism Speaks was created in 2009. The Alpha XI Delta sorority ultimately decided to part ways with Autism Speaks in 2021. Alpha Xi Delta chose to part ways with Autism Speaks because of feedback received from chapter conversation listening sessions in individual communication and philanthropy surveys, officials said.

“It’s very controversial, the intent of the organization is to raise awareness, but the organization has caused a lot of harm,” Harris said

Their mission is to find solutions across the spectrum for all ages and abilities for people with autism through advocacy, acceptance, and leading research, Autism Speaks officials say. Their vision is to have a world where autistic people reach their full potential. 

The organization has worked with the Ad Council to create public service announcements that have increased  Autism awareness by 50 percent, officials say. Autism Speaks has been one of the leading organizations in research on genomic discovery of the biology of autism, Autism Speaks officials say.

The organization has been a leading contributor to giving medical centers and other medical staff and scientists. They have also been a big contributor to the advocacy for federal funding for autism research, said Autism Speaks officials.

Autism Speaks officials said in the years they have been operating to advance awareness, they have been able to merge with the National Alliance for Autism Research, Cure Autism Now and Autism Coalition for Research and Education

“I don’t think there are any autistic people actually running the company, it’s mainly just like neurotypical people. One of the things I have picked up from what they do they rather than treating Autism like something that is able to be lived with and okay as some sort of blight on a family, something I have noticed is that I also noticed about the company’s is whenever they take a direction it is usually directed toward the family members rather than the actual Autism, it’s very indirect,” Keil said.

Autism Speaks shares harmful stereotypes of the community, Harris said. 

“What the audience gets is money grubbers,” Harris said. “People put autism in a box of what it is but it is very broad, Neurodiversity is diverse.”

Neurodivergent people are pretty creative, they are quick thinkers, and as long as they are focused on a task they are concentrated on what they produce joy, Harris said.

Less than 1% of Autism Speaks money goes to family services according to a survey done by the Autism Self Advocacy Network. The organization is known to be a better resource for autistic people, says the autistic community.

Autism Self Advocacy Network is an autism advocacy group that autistic people run for autistic people, its officials said. They help to make a more inclusive world for the autistic community.

The mission of the Autism Self Advocacy Network is to promote disability rights toward the autistic community, Autism Self Advocacy Network officials say.

Autism Self Advocacy Network combats how society treats and views the autistic community, officials say.

Their motto is “nothing about us without us”. They say it means the autistic community needs to be a part of any autism discussions, according to Autism Self Advocacy Network officials.