Profound Autism: Unique Challenges Within The Spectrum

Profound autism: a toddler placing toy cars in a straight line on a couch.

Autism spectrum disorder (ASD) is a complex condition characterized by behaviors that range from harsh sensory difficulties to brilliance in specific fields. Within this broad spectrum, profound autism stands out as a distinct and often misunderstood subset.

According to the CDC, 26.7% of all children diagnosed with ASD suffer from this condition. But how does it differ from other types of autism, and why have there been recent calls from parents and medical professionals to shine a light on it? ABA Centers of Pennsylvania is here to answer your questions. This article will explore profound autism, its unique characteristics, medical classifications, and insights into current and future care.

What is Profound Autism?

Chances are you’ve known or talked with several people with autism without knowing they are on the spectrum. Not knowing is common because ASD is a spectrum condition; it’s in the name. For example, the world’s wealthiest man, Elon Musk, has been public about growing up with autism, something most refrain from admitting to avoid workplace stigma.

No such thing is possible with profound autism, also known as severe autism. It is one of the most debilitating forms of ASD, with many having an intelligence quotient (IQ) of 50 and below. Individuals with profound autism typically exhibit significant impairments in multiple domains, including communication, social interaction, behavior, and speech. They often require extensive support in their daily lives and through adulthood, struggling to achieve independence.

Due to the severity of their condition, they represent a particularly at-risk category. Many individuals are rude or dismissive toward them, not understanding their struggle to perceive the world. Their vulnerability makes it essential to understand the daily challenges they and their caretakers face.

Unique Characteristics of Profound Autism

1. Non-Verbal Communication: One of the hallmark features of profound autism is the absence or severe limitation of verbal communication, also called nonspeaking by some autism advocates. While some individuals with autism may develop language skills to varying degrees, those with profound autism often struggle to express their needs and emotions through spoken language.

2. Demographic Traits: Compared to the average population of children diagnosed with ASD, those with profound autism are more likely to be ethnic minorities, female, lower socio-economic status, and premature or underweight at birth.

3. Challenging Behaviors: Profoundly autistic individuals may exhibit problematic behaviors, including aggression, elopement, or tantrums. Self-injurious behaviors include head-banging, biting themselves, or hitting their bodies. These behaviors can be a means of communication when they cannot express their needs or emotions verbally. They also engage in stimming behaviors such as vocalizations and hand-flapping more than the average.

4. Severe Cognitive and Intellectual Disabilities: Many individuals with profound autism have co-occurring intellectual disabilities, which can further impact their ability to learn and function independently. They show higher rates of epilepsy and are prone to seizures. This severe cognitive impairment can make it challenging for them to acquire new skills, pursue challenging academic tracks, or perform basic daily living tasks.

5. Greater Need for Support and Care: Individuals with profound autism often require extensive and ongoing support, including toileting, dressing, feeding, and personal hygiene. A therapist or a caretaker may be necessary to help in their development. They may also need consistent behavioral and sensory interventions to manage challenging behaviors and sensitivities.

The Call for Recognition

In 2013, the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5), made significant changes to the classification of autism. Before this revision, autism had distinct subtypes, including autistic disorder, Asperger’s syndrome, and pervasive developmental disorder not otherwise specified (PDD-NOS). The DSM-5 replaced these subtypes with a single diagnosis: Autism spectrum disorder.

The rationale behind this change was to recognize the broad and diverse presentation of autism and emphasize the features shared by all individuals on the spectrum. This shift promoted more accurate and consistent diagnosis, ensuring those who previously did not understand their diagnosis had an easier time navigating medical services and government programs.

However, advocates and members of the medical profession might be in the process of revising the current status quo. Autism awareness flourished with the 21st century’s newfound appreciation of neurodiversity, a celebration of difference whose aim is to include as many as possible. Members of the autism community did not want to be treated meaningfully differently or “otherized”; they organized and advocated for a more inclusive world that recognizes their strengths and achievements.

Profound autism necessitates different treatments. Families struggling with the condition can’t simply enroll their children in school or drop them off at support groups without more attention. Also, those with profound autism often cannot speak and advocate for themselves. The risk was that focusing on more “high-functioning” autism would put this vulnerable group at risk of being ignored.

Specific government programs, healthcare policies, and insurance companies that address their needs to their needs would not recognize them. The call to acknowledge profound autism as a distinct condition requiring individualized attention grew.

The Lancet Commission on the Future of Care and Clinical Research in Autism

The first mention of “profound autism” in a peer-reviewed scientific paper was in 2021’s The Lancet Commission on the Future of Care and Clinical Research in Autism Report. The Lancet is a prestigious medical journal founded in 1823 that aims to address urgent topics in society and organize international cooperation. The Commission brought together experts from around the world to assess the current state of autism research and care and make recommendations for the future.

The experts identified profound autism as a subset with high-dependency long-term care needs. Before they begin slipping through the cracks of established treatment and policy, it’s essential to make a distinct model for treatment that addresses their current and future challenges. The report identified several research priorities, including understanding the underlying neurobiology of autism, developing more effective interventions, emphasizing individual support, expanding access to services, and studying the long-term outcomes for individuals with autism, including those with profound autism. Additionally, the experts stressed the importance of early intervention to boost the effectiveness of any treatment.

Early Intervention and ABA Therapy

One of the most productive ways to improve long-term outcomes for those diagnosed with autism is early intervention. Infancy and toddlerhood are the height of brain plasticity, and kids learn abilities more quickly when they are young. This age is when many traits and behavior models that will impact them in adolescence and adulthood will take shape. Therefore, getting an early start is one of the best things you can do for someone with profound autism.

Applied Behavior Analysis (ABA) is the gold standard of autism therapy, with decades of documented success and peer review. It is individualized and administered by highly trained, board-certified behavioral experts. Through positive reinforcement and play, your child can learn new skills that, little by little, may improve their chances to function independently. Therapists can curtail challenging behavior with healthier coping mechanisms that better achieve the feelings someone with ASD tries to convey.

ABA Centers of Pennsylvania and Profound Autism

With how taxing profound autism can be, getting started early with treatment and support can improve everything. We offer compassionate, driven ABA therapy that can help your child meaningfully grow. Kids with profound autism need a lot of attention in many environments, and our therapy can be at home, our Philadelphia and King of Prussia clinics, or in other natural settings like the park or school.

Call (844) 444-7496 or message our website to make a difference together.

Scroll to Top