Profound Autism: The Conversation No One is Having

Profound Autism is often overshadowed by the focus on higher functioning autism in public discourse. There is a need for broader understanding, better support, and targeted research on and about profound autism. 

Profound autism is a term used by some researchers and advocacy groups to describe a subset of individuals with autism spectrum disorder (ASD) who have significant intellectual and functional disabilities. While profound autism is not presently an official diagnostic term in the DSM-5-TR (Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, Text Revision), it aims to provide a clearer description of individuals on the more severely affected end of the autism spectrum.

Key Characteristics Often Associated with Profound Autism 

1. Significant Intellectual Disability: Often indicated by an IQ score below 50.
2. Minimal to No Language Skills: Individuals may be nonverbal or have very limited verbal communication abilities. They may rely on non-verbal forms of communication such as gestures, body language, or augmentative and alternative communication (AAC) devices.
3. High Support Needs: Requiring 24-hour supervision and extensive assistance with daily living activities such as dressing, bathing, eating, and personal care throughout their lifespan.
4. Severe Core Autism Symptoms: Significant challenges in social communication and interaction, as well as restricted and repetitive behaviors.
5. Co-occurring Conditions: Individuals with profound autism are more likely to have medical conditions such as epilepsy, sensory processing issues, and mental health conditions. They may also exhibit challenging behaviors like self-injury or aggression. 

Overshadowing of Profound Autism by High Functioning Autism in Public Discourse 

The public conversation around autism often highlights the experiences of individuals who are considered ‘high-functioning’ i.e. those who may have strong verbal skills and intellectual abilities, sometimes even exceptional talents. While these stories are valuable and contribute to a broader understanding of neurodiversity, they can unintentionally overshadow the realities faced by individuals with profound autism and their families. 

1. Incomplete or Inaccurate Public Understanding: When the dominant narrative focuses on higher-functioning autism, the public may develop an incomplete and potentially inaccurate understanding of the autism spectrum. They might not grasp the significant challenges related to communication, daily living skills, and complex medical and behavioral needs that are often present in profound autism. 
2. Allocation of Research Funding & Other Support Services: When the public and policymakers primarily see one facet of autism, it can impact the allocation of research funding, support services, and community resources. The specific and often substantial needs of individuals with profound autism might not be adequately addressed if they are not well-understood or visible in public discourse. 
3. Insufficient Support for Parents: Parental involvement is essential for any kinds of ABA therapy. Families raising children or adults with profound autism can feel isolated and misunderstood when their daily realities differ significantly from more commonly portrayed experiences of autism. They may struggle to find relatable information, support networks, or even understanding from their wider communities. 

Why the Focus on Higher-Functioning Autism?

1. More Readily Understood Narratives: Stories of individuals with strong verbal skills and intellectual abilities can be easier for the general public to understand and connect with. 
2. Media Representation: Media portrayals of autistic characters often lean towards savant like abilities or quirky but ultimately independent individuals, which aligns more with higher-functioning presentations.
3. Advocacy Landscape: Historically, some of the most visible voices in autism advocacy have been individuals with higher-functioning autism, who are better equipped to articulate their experiences. 
4. Lack of Representation: Historically individuals with profound autism have been largely excluded from autism research due to complexities of conducting studies with this population. This lack of research contributes to a limited understanding of their specific needs and effective interventions.  
5. Limited Availability of Schools & Therapy Centers: Mainstream schools often lack the resources and trained staff, and specialized programs with essential certification courses necessary with profound autism, who may require intensive individualized attention, modified curricula, and sensory-sensitive environments. 

The number of schools specifically designed to meet the complex needs of individuals with profound autism is often limited, leading to long waiting lists and difficulties in accessing appropriate education. There is also a lack of trained staff; general education teachers often don’t receive adequate training and professional development or may not have undertaken required certification courses to effectively support students with profound autism, particularly those with more complex needs. 

By broadening the public conversation, we can foster greater empathy, understanding and ultimately, better support for individuals with profound autism - not to mention providing robust and accessible support systems for families who are caring for individuals with profound autism! 

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