UI partners with autism research organization amid community concerns

The University of Iowa will partner with SPARK for collaboration on autism research, amid concerns from lack of autism representation at the university.


Jeff Sigmund

The Old Capitol is seen on April 13, 2020.

Rachel Schilke, News Reporter

The University of Iowa recently began work with SPARK for Autism, a research organization of which the UI has been an extension site for three years, on a project that aims to map the heterogeneous medical complexities of autism, causing concern for some UI community members and student organizations.

SPARK representative for Iowa Jacob Michaelson said SPARK’s endgame is to organize a pool of more than 50,000 individuals with autism, and their families in order to better understand autism across the spectrum and address medical issues that can be developed from having autism, such as eating and sleeping disorders, and not to find a “cure.”

However, some UI students are skeptical about the partnership between the university and SPARK’s intentions, fearing that a wide database could be used for early identification of autism and preventing it.

UI senior Adrian Sandersfeld, a member of the autistic community, said in an email to The Daily Iowan that their initial reaction to the partnership was one of alienation and anger.

“I feel like the University of Iowa does not really care about autistic students at all,” Sandersfeld said. “This partnership between the UI and SPARK will only make us feel more alienated. Money that could be spent improving the academic environment for neurodiverse students is being wasted on [a] eugenics project. Answering questions for this article is the closest I’ve ever come in having my voice heard on this matter by anyone in power at the University of Iowa.”

Sandersfeld mentioned that UI students created the ABAL Therapeutics, a designing software to assist parents of children with autism by providing at-home ABA therapy.

Sandersfeld said they believe the partnership threatened not only autistic students, but UI Hospitals and Clinics patients as well. As both, Sandersfeld said, it makes them suspicious of their doctors and angry at university administrators.

Sandersfeld added that autism is a “disability, not a disease.”

Michaelson said SPARK has been met with some controversy as some believe the organization wishes to find ways to cure autism and develop methods to suppress it, but the research would lead to higher acceptance of those with autism throughout the community, which would in turn be essential to the fulfillment of SPARK’s mission.

“I think there are some people who are afraid of the unknown,” Michaelson said. “There are a lot of unknowns with autism. You can’t have increased acceptance in the face of a total mystery. We are not looking for a cure for autism. The whole point here is fundamental science — understanding at the personal, biological, and community level. Understanding is the best hope we have to improve the lives of those with autism and their families.”

Michaelson said the established SPARK team at the university is now focusing on the medical issues that can be developed from having autism, such as eating and sleeping disorders. He said UIHC put out a call for 5,000 individuals or families of someone with autism that also had eating or sleeping disorders to participate in the study. Now, the group is offering saliva kits delivered to home as COVID-19 social-distancing recommendations are in place.

He said the UI autistic community has a “seat at the table” by having members on the advisory committee, so perspectives from stakeholders in the conducted research can be heard and the right questions can be asked.

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Before the existence of SPARK, many smaller studies were conducted, made up of about 100 participants, to distinguish certain types of autism, he said. Researchers have failed to find a concrete answer.

“[SPARK] will hopefully be a resource for researchers and scientists for the next 20 years,” Michaelson said. “Researchers can reach out to the community and ask for specific volunteers for their studies, since the spectrum for autism is [wide]. It can span inability to communicate to being ‘high-functioning,’ where they can have a conversation and you would not know right away that they had autism.”

UI master’s student Andrea Courtney, treasurer for UI Students for Disability Advocacy and Awareness, said she had not heard of the UI partnership with SPARK before being contacted by the DI, but she said she was hesitant to believe the intentions of the autism study at UIHC were pure based on knowledge of other autism research groups.

“I know people who have autistic siblings and I have worked with those who will probably receive a diagnosis in the future,” Courtney said. “There are ways to improve the quality of lives of those with autism without looking for a ‘cure,’ like improving accessibility to education and the workforce.”

She said hearing that the university had decided to collaborate with SPARK made her feel as though officials were making a choice about how autism should define individuals.

“[This study] seems like it’s coming from a perspective that the person is the problem,” she said. “… Not the environment or the barriers that society has created. Have they reached out to those on the opposing side? It’s society’s ableism that needs to be fixed.”

Director of the University of California Davis MIND Institute Len Abbeduto said the neurodiversity movement is a reminder of the value of individuals and no one is more or less valuable to society. He said SPARK’s work applies to understanding societal challenges that those with autism may have.

“We focus on words such as ‘disease’ and ‘disorder’ so much that it can appear to have a negative connotation,” Abbeduto said. “In the case of autism, it is less about autism itself and more about the challenges that come from autism, such as limits to being independent and medical disorders.”

He said the research the UI is conducting with SPARK, and autism research in general, is to understand the basis of medical challenges from autism and treat them, not about finding a “cure.”

Abbeduto’s work at the MIND Institute focuses on language and communication challenges for autistic individuals and providing therapy options for parents to use with their children.

“[At the MIND Institute], we work to teach parents to create an opportunity to foster their children’s language skills,” he said. “We want to coach parents in their homes, so therapy is more accessible and more personal. They will be more active agents of change and it will reduce the burden of travel. They enjoy it and feel empowered when their children make progress.”

Abbeduto said that while developing ways to defeat challenges created by autism is important, it is essential for the research community to recognize the conversations between those with autism and organizations such as SPARK.

“[Researchers] are better off focusing on maximizing opportunities … instead of looking too hard at the challenges,” he said. “It’s about removing challenges, so everyone has the best chance of taking advantage of their communities and their choices. The disability community has been great with allowing families and individuals to have choices.”

Michaelson said SPARK strives to assure autistic individuals that they are accepted not only in their community but in society as well. He said there are many outreach programs to connect the autistic community with SPARK’s research opportunities, from information booths at the Iowa State Fair to hands-on experience.

“We have undergraduate researchers in our lab and many of them have a loved one with autism or have autism themselves,” Michaelson said. “So, come and see. There might be an opportunity to investigate and learn what SPARK is doing — to have a human connection with the research and the science.”