Understanding Autism: Beyond Labels
The landscape of autism diagnosis and terminology has shifted dramatically over the years, creating both clarity and confusion for families, churches, and communities. The evolution from terms like PDD-NOS (Pervasive Developmental Disorder-Not Otherwise Specified) and Asperger's syndrome to the current DSM-5 levels of autism represents significant changes in how we understand and describe autism spectrum disorders.
One key insight references Temple Grandin's perspective that removing Asperger's syndrome from the DSM-5 was problematic. This change has created situations where individuals with vastly different needs and abilities are grouped under the same diagnostic umbrella. For parents and caregivers, describing their child's specific needs becomes challenging when the diagnostic language feels insufficient to capture the uniqueness of their loved one's experience. This explains why parents often use varied terminology when describing their children – from "high functioning" to "level one autism" to other personalized descriptors that better reflect their child's specific reality.
The tension between person-first language ("a person with autism") and identity-first language ("an autistic person") represents another important discussion in autism communities. Some individuals prefer identity-first language as a way of embracing who they are without shame, while others prioritize being recognized as a person before their diagnosis. While we may have preferences in language, our identity as followers of Christ should ultimately take precedence over any other identifier. This perspective offers a balanced approach that respects individual preferences while maintaining a Christ-centered foundation.
The current DSM-5 framework categorizes autism into three levels of support needs: Level 1 (requiring support), Level 2 (requiring substantial support), and Level 3 (requiring very substantial support). These classifications consider factors like social communication challenges and restricted/repetitive behaviors. However, these diagnostic labels should never replace getting to know the individual person. The most valuable approach is always to assume competence, ask questions, provide appropriate options, and build relationships that allow for understanding specific needs and strengths.
For churches seeking to make sure everyone has a seat at the table, the message is clear: labels and diagnoses provide helpful background information, but they should never be the primary lens through which we see people. By starting with the assumption of competence and focusing on building relationships, faith communities can create environments where people of all abilities can know Christ, grow in their faith, and serve using their God-given gifts. The statistics are sobering – 80% of people with disabilities are not inside church walls – but with greater understanding and intentional inclusion, churches can become places where everyone truly belongs.
No one has all the answers or perfect solutions. Still, by continuing the conversation and prioritizing gospel accessibility, churches can become genuine communities with open tables and plentiful seats for the 65 million Americans with disabilities who should be given the opportunity to fully participate in the total life of the church.
