This month, President Donald Trump lit up the White House blue in honor of Autism Awareness Month, using the color associated with the organization Autism Speaks.
Autism Speaks is an advocacy group focused on providing support for people with autism and researching potential causes of autism. While the organization has been successful in creating brand recognition and raising awareness about autism, it has continually signaled that it should be thought of as an unfortunate circumstance both through advertising and its own organizational actions.
“I think the concern that many people with autism have about Autism Speaks is that they very much have a focus on identifying the cause of autism and trying to cure autism,” said Matt Tincani, a psychological studies in education professor. “And that upsets people who are on the spectrum, because it’s like, ‘Well, I’m a person with autism, you’re basically trying to eliminate people with autism in curing it.”
Autism Speaks needs to shift its focus on research, which accounts for 32 percent of its budget, to instead providing support to people with autism so they can find jobs, maintain social relationships and live independently. The organization also needs to do a better job of presenting autism in a positive light, despite the challenges people with autism and their families face.
“There’s tremendous focus on early screening and early intervention and sort of making the symptoms of autism go away, and I think that’s important,” Tincani said. “But there are still people with autism in the world and they need support and they need help.”
According to the Autistic Self Advocacy Network, less than 4 percent of Autism Speaks’ budget goes towards the “Family Service” grants that the organization uses to fund services.
This is a meager percentage. Some funds need to be directed to actually helping people with autism, most of whom are adults, Tincani said.
“I think it’s important to fund the research, but there needs to be a balance,” he said.
Those looking to support people with autism this month should consider donating to local organizations instead of Autism Speaks. These organizations can have a more direct impact on providing services for people with autism. In Pennsylvania, the organization ASERT provides access to regional services and offers information to families.
At Temple, the sorority Alpha Xi Delta works with Autism Speaks because it is the sorority’s national philanthropy.
Iliana Sadler, president of Temple’s chapter, said her sorority works with people with autism in other ways though, too. Every fall, Temple’s chapter participates in Huddle Up for Autism, a fundraising and awareness event for the Center for Autism Research at the Children’s Hospital of Philadelphia in partnership with the Philadelphia Eagles.
“We make sure we are really doing more for the autism community than just Autism Speaks,” said Sadler, a junior finance and economics major. “We don’t spend a lot of time advocating for the philanthropy itself. We focus our energy on advocating for those who we are raising this money for.”
While Autism Speaks may have some work to do to better represent the community of people with autism, we can work individually to help people with autism by being better allies here on Main Campus.
Jonathan Atiencia is a student in the Academy of Adult Learning who has autism. He said other students should learn “how to be respectful” and “how to help someone” who has autism.
“I think they should know about … people with autism at Temple’s campus,” said Atiencia, a freshman media studies and production major. “And then they’d be respectful and they wouldn’t make fun of anyone.”
I agree with Atiencia. We can all be better allies. And we should be working to do so year-round.
But perhaps, we can use Autism Awareness Month as a chance to call attention to how organizations with the ability to create a larger impact can improve their mission, too.
Jenny Roberts can be reached at firstname.lastname@example.org or on Twitter @jennyroberts511.