Profound Autism: Parents and caregivers of individuals diagnosed with autism know that the spectrum is so broad that no two people exhibit the same symptoms. They also understand the challenges that come with managing the more severe symptoms of their loved ones.
That’s the case when your loved one is diagnosed with profound autism. This term is used to describe a more advanced form of Autism Spectrum Disorder (ASD) and is gaining increased use in highlighting this segment of the neurodiverse community. Unfortunately, individuals and families affected by this level of autism often find themselves marginalized and inadequately addressed in research and treatment strategies.
As we mentioned earlier, autism affects individuals in diverse ways. Some people with autism can finish their university education and build successful careers, while others may experience more difficult symptoms such as intellectual disability or complete absence of speech. It is crucial to understand the severity of autism and find ways to integrate therapies such as ABA with the diverse aspects of neurodiversity.
In this blog by Texas ABA Center, we will explore the topic of profound autism, its implications, and the role of ABA therapy in supporting individuals and families.
What is Profound Autism?
Autism is a complex neurodevelopmental disorder affecting a person’s ability to communicate, interact socially, and engage in repetitive behaviors. Profound autism is a severe spectrum level characterized by significant communication, social interaction, and behavior deficits, often accompanied by intellectual disability.
Professionals use this term to describe individuals with ASD who have an IQ below 50 or are minimally verbal or nonverbal speaking.
Most children with profound autism may also experience:
- Constant care and supervision from an adult.
- An inability to be left alone without assistance.
- Difficulty performing basic daily adaptive tasks.
- Having an intellectual disability, typically characterized by an IQ below 50.
- Demonstrating limited or no language skills.
- Potentially experiencing challenges such as self-injury, aggression, or epilepsy.
CDC Report about Profound Autism
The Centers for Disease Control and Prevention (CDC) recently published a study assessing the occurrence of individuals with severe disabilities. During the last couple of years, there has been growing support for a proposal to create a distinct diagnostic category specifically for those with more severe forms of autism, such as profound autism.
The analyzed records of over 20,000 8-year-old children diagnosed with autism revealed that 26.7% would meet the criteria for profound autism. In addition, individuals identified with profound autism showed a higher likelihood of being female, belonging to ethnic or racial minority communities, having a lower socioeconomic status, being born prematurely, or having a low birth weight.
The addition of the term “profound” to the most recent data indicates a growing recognition of the unique challenges faced by individuals with this condition. This shift highlights the increasing awareness that profound autism is distinct from the broader diagnosis of what we know about autism spectrum disorder.
Profound Autism: A Call for Specialized Care and Support
The Lancet published a Commission on the future of care and clinical research for autism, and within it, a side panel made a case for adopting the term profound autism. This term is intended to describe individuals with autism who require constant supervision or care, are typically believed to have significant intellectual disabilities, have limited or no language skills, and cannot advocate for themselves.
The commission argues that using the term “profound autism” is crucial because it distinguishes these individuals with higher dependency needs from others within the autism spectrum. In most instances, people with this type of autism require comprehensive support and cannot express their needs and rights. Furthermore, the journal foresees “high dependency needs” throughout their lifetimes.
The Lancet Commission, formed in 2018 by international experts, has determined an urgent need for a more comprehensive approach to treating and caring for autism. Experts cannot predict the evolving needs of individuals with profound autism as they age. Addressing this uncertainty is essential through careful planning and future research.
Likewise, there are growing safety concerns regarding individuals with profound autism, who face a higher risk of experiencing abuse or maltreatment due to their specific daily requirements and abilities. For advocates, defining profound autism and advocating for broader representation is crucial. This effort aims to prepare practitioners better to support individuals with autism.
Recognizing Profound Autism
With the 5th edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) and the International Classification of Diseases (ICD-11), autism was considered a single-spectrum disorder defined based on two core domains: impaired social communication and repetitive, restricted, and sensory behaviors.
Significant changes have occurred in the autism community since then. Self-advocates with ASD have emphasized that autism is a neurological difference rather than a disability or disorder and have advocated for broader social acceptance.
These passionate advocates highlight the concept of autism as an intrinsic part of one’s identity, replete with numerous strengths and unique gifts. Simultaneously, they underscore the importance of granting autonomy to individuals with autism, prioritizing self-determination over-representation by neurotypical authority figures.
Regrettably, as the awareness of neurodiversity continues to evolve, some parents with children with profound autism may feel overshadowed. The current neurodiversity trends sometimes inadvertently neglect the specific needs of these individuals when they’re not explicitly recognized or addressed by advocates who focus on other facets of the autism spectrum.
Many families with profound autism cannot feel the “neurodivergent bliss” when seeing their child engage in self-injurious behavior or being unable to perform basic tasks such as using the bathroom.
The primary rationale behind The Lancet’s commission is to introduce and categorize the term profound autism for children or adults who exhibit specific functional needs.
The characteristics of autism do not simply define profound autism but rather encompass the intensity of individual needs, especially those related to intellectual and language disabilities.
The Importance of Early Diagnosis and Intervention for Profound Autism
Early diagnosis of autism is crucial, especially for individuals with profound autism. Early diagnosis opens the door to specialized interventions and essential supports necessary for the developmental advancement of all children on the spectrum. Individuals with profound autism may require more specialized care due to their unique characteristics. Thus, early diagnosis allows healthcare professionals to create personalized plans commensurate with the child’s level of independence and future aspirations.
As well as early diagnosis, early intervention plays an essential role in shaping a child’s well-being and ability to thrive in future environments. Research demonstrates that early intervention ABA therapy effectively achieves superior developmental outcomes for children on the autism spectrum. Although treatment of profound autism may focus on addressing complex behaviors, early initiation of treatment often results in more favorable outcomes as it lays the foundation for skill acquisition.
The Focus of ABA Therapy on Children with Profound Autism
The principal focus of ABA therapy in the case of children with profound autism is to target and enhance their specific behavioral, communication, and social difficulties. ABA professionals recognize the imperative need for an individualized approach, given the unique characteristics of everyone on the autism spectrum.
Acknowledging the presence of profound autism equips Board Certified Behavior Analysts (BCBAs) with the insights required to tailor their approach, ensuring a more beneficial experience with ABA therapy and a better quality of life. ABA providers dedicate their efforts to comprehending and redirecting behaviors that may impede independence. Within ABA sessions, children may work on acquiring essential skills through diverse techniques while actively engaging with their surroundings.
Though the behaviors displayed by children with profound autism may sometimes be quite challenging, many BCBAs possess the expertise to assist individuals in improving their functionality, even during crises. Having a compassionate comprehension of the obstacles associated with profound autism, ABA practitioners play a pivotal role in guiding families through this terrain, making daily life more manageable.
Texas ABA Centers Helps You Navigate Autism
Profound Autism is a challenging but essential category to recognize within the autism spectrum. As we advance in our knowledge and resources, we can provide better care and support for individuals with this condition, helping them lead fulfilling lives within their capabilities. Texas ABA Centers and similar organizations stand as beacons of hope for families dealing with Profound Autism, emphasizing the significance of inclusion for all neurodiverse individuals.
We promote inclusion and celebrate the uniqueness of each child while working tirelessly to enhance their quality of life.
Get to know more about how we can improve the life of your loved one by calling us at (877) 771 57 25 or get a free consultation with one of our experts.
