What is the most severe form of autism?
Autism is a vast spectrum, and the symptoms can be both general and specific. The experiences of one person with autism may differ significantly from those of another. Although individuals with autism spectrum disorder (ASD) can usually develop an independent life and pursue professional growth, there are some with profound autism. This term describes those with a more severe level on the spectrum.
Just as we encourage parents, caregivers, families, and individuals with autism to achieve a fuller life, it is also essential to recognize those who, on the contrary, have a more challenging battle on the spectrum. Individuals diagnosed with profound autism can become non-verbal, require constant support for basic tasks, and may even exhibit self-injurious behaviors.
At ABA Centers of Georgia, we want all neurodiverse families to feel represented. In this blog, we will explain a bit about this new term in autism and the challenges caregivers face, and we will provide some hope through the care that Applied Behavior Analysis (ABA) therapy can provide to families in Alpharetta, Atlanta, Marietta, and throughout the Georgia community.
What is Profound Autism?
The term “profound autism” was introduced in 2021 by the New Lancet Commission Report, which emphasizes the need to distinguish individuals with higher support needs. It describes them as individuals with an IQ below 50, unable to speak for themselves, and requiring full assistance from an adult.
In addition to the more common autism symptoms such as repetitive behaviors, sensory sensitivities, and difficulty interacting, individuals with profound autism may also present:
Limited or no verbal communication – Individuals with profound autism often have limited verbal skills or may not speak at all. They may rely on other forms of communication, such as gestures, body language, or augmentative and alternative communication (AAC) devices.
Intellectual Disability- While not always the case, some individuals with profound autism may also have an intellectual disability.
Lower Adaptive Functioning Scores – Adaptive functioning refers to a person’s ability to carry out everyday tasks necessary for independent living. They may struggle with basic self-care tasks, have difficulty communicating their needs and desires, find it challenging to interact socially with others, and may face obstacles in understanding and responding to their environment effectively.
Epileptic Episodes (Seizures) – Individuals may experience epileptic episodes, which can vary in type and severity. Epileptic seizures may present as convulsions, staring spells, or momentary lapses in awareness.
Self-Injury – Self-injurious behavior is another potential symptom among individuals with profound autism. This behavior may include hitting oneself, head-banging, biting, or scratching to the point of causing injury.
What is the Intent of this Category for Autism?
One of the main intentions of this report is to emphasize the need for more personalized and comprehensive care models for individuals with severe levels of autism. The needs of this group differ significantly from those with less severe forms of autism. Furthermore, it underscores the importance of including them in research and advancements in treatments.
As Alison Singer, mother of a child with profound autism and founder of the Autism Science Foundation, rightly points out, labels can often be harmful or accusatory. However, in the case of profound autism, the label brings visibility to those individuals who cannot achieve independence, who require constant assistance, and who lack the accommodations and interventions they need.
The term “profound autism” also serves as a call to action for centers, researchers, and the general public to educate themselves and understand that not all individuals with autism can function highly independently. It highlights the need for appropriate attention, respect, and understanding.
Findings About Profound Autism
Gradually, growing awareness and comprehension of profound autism are emerging, sparking increased interest in gaining deeper insights into this level of the autism spectrum:
- Public Health Report research discovered that 26.7% of 135 8-year-old children diagnosed with autism exhibited profound symptoms
- Children with profound autism were more likely to be female and from racial and ethnic minority groups compared to children with non-profound autism
- Caregivers of individuals with profound autism report significant stigmatization from society, including within the autism community itself, according to Frontiers. Stigma arises from general misunderstanding of autism, especially regarding individuals with lower cognitive abilities or challenging behaviors.
Importance of Early Intervention
Early intervention of autism, especially in cases of profound autism, is vitally important as it provides adequate time to access specialized interventions and support systems that are vital to the developmental progression of children on the spectrum.
Children with profound autism often present unique characteristics that require more individualized attention. Therefore, a diagnosis and early interventions allow healthcare professionals to design personalized strategies that match the child’s level of autonomy and future goals.
Moreover, the implementation of intervention strategies at the earliest possible stage is critical in shaping the child’s well-being and ability to thrive in vital developmental contexts. Although treatment of profound autism may be primarily aimed at managing intricate behaviors, initiating therapy at an early stage often results in more positive outcomes.
ABA Therapy Supports Individuals with Profound Autism
ABA therapy can be highly beneficial for individuals with profound autism by providing structured, individualized interventions to address their unique needs and challenges. Here’s how ABA therapy supports individuals with profound autism:
1. Functional Assessment: Board Certified Behavior Analysts (BCBAs) conduct detailed assessments to understand the individual’s strengths, weaknesses, preferences, and challenges.
2. Targeted Intervention: Based on the assessment, ABA therapists identify specific behaviors or skills that require improvement. These include communication, social skills, self-help skills, and reducing challenging behaviors.
3. Structured Learning Environment: ABA therapy provides a structured learning environment with clear, consistent routines and schedules. The predictability can help individuals with profound autism feel more secure and comfortable, reducing anxiety and stress.
4. Breaking Down Skills: One component of ABA therapy is breaking down complex skills into smaller, manageable steps, helping individuals with ASD learn new skills gradually and building on their existing abilities.
5. Visual Supports: ABA therapists often use visual supports such as pictures, schedules, and visual timers to help understand expectations and transitions, as well as create new habits like brushing their teeth.
6. Functional Communication Training: For individuals with limited or no verbal communication, ABA therapy can teach alternative forms of communication such as sign language, picture exchange systems, or augmentative and alternative communication (AAC) devices.
7. Reducing Challenging Behaviors: ABA therapy employs strategies to understand the function of challenging behaviors (such as aggression, self-injury, or tantrums) and develop interventions to address them effectively. Therapists can teach alternative, more adaptive behaviors to replace challenging ones.
ABA Centers of Georgia and Autism Care Services
Recognizing that individuals with autism have varying abilities and require different levels of support is essential to providing better resources and understanding for families and caregivers of children with profound autism.
Our commitment at ABA Centers of Georgia is to provide quality service while understanding the individuality of each client, their abilities, and the outcomes they can realistically and consciously achieve.
Find out more about our autism care services and how they can positively impact your loved one’s life by calling us at (855) 929-5058 or scheduling a free consultation with our compassionate team.
