Autism spectrum disorder: Navigating a road of advocacy and controversy

April is Autism Awareness Month, but the support for ASD extends beyond April.

By Lauren Wolters,

The number of children with autism spectrum disorder (ASD) has been rising consistently during the last three decades. The Centers for Disease Control and Prevention (CDC) 2020 surveillance estimates that one in 36 children have been identified with ASD. 

The Autistic Self Advocacy Network (ASAN) is a nonprofit organization run by and advocating for autistic people. ASAN believes that the goals of autism advocacy should be to establish equal access, equal opportunities, and equal rights for people with ASD.  

ASAN also embedded their book, “Welcome to the Autistic Community,” into a website so that it is easy to read. They state that the book is especially important for people with ASD to read but also a way for people without ASD to become allies for the community. The book can also be downloaded to read offline or bought as a print copy. ASAN has its own resource library to quickly access its wide variety of books, reports, and other tools to increase awareness and advocacy. 

Besides ASAN, another group, Autism Speaks, claims to advocate and support research and advances in the care for autistic individuals. However, controversy exists on how much Autism Speaks works for autistic individuals.  

ABASN posted a flyer in 2021 that revealed that only 0.16 percent of its budget was used for autistic families. The flyer also adds that only one of the 30 Board of Directors for Autism Speaks has autism. Additionally, Autism Speaks fundraising strategies have been known to portray autistic individuals in scary and mysterious ways, invoking fear to raise money. These fundraising strategies can increase barriers and stigma for ASD. 

In its own flyer posted in 2023, Autism Speaks claims that 86 cents of every dollar donated to the organization directly supports research, advocacy, programs and services that benefit the ASD community. According to their 2023 flyer, only 10 percent of their budget is allocated to fundraising compared to the 21 percent allocated in 2021.  

Autism Speaks states that they do not support research searching for a cure to ASD. They do claim that the goal of their genetics research is understanding the diverse healthcare needs of the autistic community and what impacts their quality of life. ASAN counters in their 2021 flyer that Autism Speaks has not changed their core beliefs and still fund research aiming to identify the causes of ASD despite the priorities of the autistic community centering on the quality of life for individuals with ASD. 

Controversy remains around Autism Speaks and how its own mission may or may not align with the mission of the autistic community. Health organizations such as the CDC provide resources to advocate and support the autistic community is less controversial ways. The CDC has a toolkit for healthcare professionals to raise awareness.  

Social media is one of several non-monetary ways to raise awareness for ASD. The CDC also lists several hashtags to utilize and link uplifting and supporting ASD messages on social media. These hashtags include: #CelebrateDifferences #AutismAcceptanceMonth #AutismAwareness #Neurodiversity.  

The CDC also supports early detection of Autism and offers a Milestone Tracker app that can help the parents and caregivers of children identify any delays in their child’s development and what steps to take next. 

The University of Findlay strives to establish an inclusive and supportive atmosphere for students from all backgrounds. The Office of Accommodation and Inclusion offers housing accommodations, testing accommodations, assistive technology and many other accommodations to eligible students. Eligibility is determined through an interview between the director of disability services and the student. The Office of Accommodation’s website has more information on how to apply for these resources and information on the other resources available.