As a parent, it can be overwhelming and heart-wrenching to learn your child may have Profound Autism. Profound autism is an umbrella label describing a more severe autism spectrum disorder (ASD). It has become more frequently employed to represent this specific aspect of the neurodivergent population. Unfortunately, individuals and families touched by profound autism are often overlooked and underrepresented in research and treatment planning.
Because autism is a “spectrum” disorder that impacts individuals in different ways, some with autism go on to graduate from Ivy League Universities and advance in promising careers. In contrast, others with ASD display atypical interests and behaviors, generally requiring support in early development.
At the same time, others under the exact diagnosis of ASD are gravely intellectually impacted, extremely verbally limited, or nonspeaking, requiring 24/7 support. It is becoming clear to autism experts and families worldwide that this group needs comprehensive care and extended periods of autism services.
This blog will explore profound autism and what families can expect to learn as we advance in understanding this aspect of neurodiversity. We hope this blog simplifies the topic so you can take the vital next steps your family may require.
For more information about ABA therapy with ABA Centers of America, click here.
What is Profound Autism? What Are the Symptoms?
Like many individuals on the autism spectrum, people with profound autism typically experience significant challenges in areas such as learning, communication, and behavior. These struggles often complicate everyday situations. The term profound autism applies to an individual with ASD possessing an IQ less than 50 or being minimally verbal or nonspeaking.
Many children with profound autism also have epilepsy or exhibit complex behaviors like aggression or self-injury. Because of the severe nature of these behaviors, many individuals with profound autism often require round-the-clock support over a lifetime. These individuals may need help with various aspects of daily living, like hygiene, dressing, and eating.
It is crucial to understand that individuals with profound autism require personalized care that considers their unique needs and challenges.
What Does the CDC Say about Profound Autism?
According to the Centers for Disease Control and Prevention (CDC), the most recent statistics show 26.7% of individuals with ASD have profound autism. Interestingly, while this population is significant, this is the first time this statistic is being reported utilizing CDC-collected data.
Including “profound autism” in the latest figures demonstrates the growing awareness surrounding these significantly impacted individuals. This change signifies an evolving understanding that “profound autism” differs from the more universal “autism spectrum disorder” label.
When the study compared children with profound autism to their peers with non-profound ASD, those diagnosed with profound autism were more inclined to be female, from ethnic or racial minority groups, of lower socioeconomic status, born early, or with low birth weight.
According to researchers, these new statistics reflect that girls with mild autism are less likely to be diagnosed than boys. The same is true for individuals in communities of color or low-income areas. Research reflects these communities are less likely to obtain an ASD diagnosis compared to white, affluent children. With fewer mild cases in these groups, children with profound autism occupy a more significant share of diagnoses.
Profound Autism and the Lancet Commission Report
In December 2021, a publication of The Lancet Commission for the Future of Care and Clinical Research of Autism called significant attention to the need to endorse the term “profound autism” in a peer-reviewed medical journal for the first time.
According to the commission, utilizing the term ”profound autism” is critical because it distinguishes these individuals as having higher dependency needs from others with ASD. In most cases, individuals with profound autism require comprehensive support and cannot advocate for their needs and rights. More importantly, the journal projects “high dependency needs” over a lifetime.
Established in 2018 by international experts, The Lancet Commission concluded that a more encompassing model of autism treatment and care is urgently required. Currently, experts cannot foresee the needs of the profound autism population as they age. This unknowing is vital to resolve with careful future planning and research.
Categorizing Profound Autism
Since 2013, with the DSM-5 update, all children diagnosed on the spectrum have been grouped into the universally broad diagnosis of autism spectrum disorder. The “spectrum” includes five conditions, like Asperger’s, which before the update was typically reserved for high-functioning individuals or mild autism.
Since then, the autism community has changed in many ways. Many self-advocates with ASD encourage society to embrace the notion that autism is not a disability or disorder but a neurological difference. These advocates promote the perception of autism as an identity composed of many strengths and gifts. At the same time, these autism advocates promote autonomy whenever possible rather than representation by neurotypical authority figures.
Unfortunately, parents with significantly impaired and dependent children who cannot socialize or care for themselves feel overshadowed by the new trends in neurodiversity awareness. To advocates promoting a specific category for individuals with profound autism, the needs of the individuals are often neglected when not identified.
According to the Lancet commissioners, those with profound autism and their families operate at high risk of being marginalized by the increased focus on “more able” or “higher functioning” individuals with autism. Commissioners describe that many with profound autism will often require continual monitoring, even after 21, when pediatric autism services conclude, or insurance companies stop coverage.
Additionally, increased safety concerns surround individuals with profound autism, who are more likely to receive abuse or maltreatment based on their daily needs and skill sets. To these advocates, defining profound autism and promoting more vast representation helps practitioners serving the autism population ensure they are prepared to support these clients.
Why is Early Diagnosis Important?
Early diagnosis of ASD is critical for all children living with the condition. The diagnosis makes patients eligible for the specialized interventions and the support they need for developmental progress. Children with profound autism may require a more technical approach to care that focuses on their unique features. Early diagnosis allows for individualized plans tailored to a child’s level of independence and future goals.
Why is Early Intervention Vital?
Understanding the unequal challenges of children with profound autism is essential to providing the best possible care. Early intervention can significantly affect a child’s quality of life and ability to thrive now and in future settings. Research shows that early intervention ABA therapy leads to the best developmental outcomes for children on the spectrum. While early intervention for profound autism may focus on complex behaviors, early treatment typically leads to better results, which sets a foundation for skill acquisition.
How Can ABA Therapy Reach Children with Profound Autism?
Applied Behavioral Analysis (ABA) practitioners understand that every individual on the spectrum will require a personalized approach. Children with profound autism may require skill sets of more experienced Board Certified Behavior Analysts (BCBA) and Registered Behavior Technicians (RBT). However, ABA sessions will still focus on developmental goals and behavior.
Recognizing profound autism helps BCBAs offer children the approach they need for a better experience with ABA and in life. ABA providers work to understand and redirect behaviors that can hinder independence. During ABA sessions, children may work on access to needs through various means and engage with the world around them.
While the behaviors children with profound autism may exhibit are sometimes extreme, many BCBAs possess the expertise to help individuals improve functioning, even in a crisis. With a compassionate understanding of the challenges profound autism may bring, ABA practitioners can help families navigate this terrain to make every day easier.
A primary focus of treating children with profound autism is to ensure they have access to suitable therapies. Defining the population and estimating the number of children in this category is a step toward guaranteeing enough appropriate services.
ABA Therapy Benefits Children with Profound Autism
Through ABA therapy, trained professionals work one-on-one with children to help them learn new skills and refine behaviors in a supportive and playful environment. Personalized interventions can help children with profound autism develop the communication, socialization, and learning abilities that promote greater participation in the world around them.
ABA Therapy Helps Families Touched by Profound Autism
Families of children with profound autism often struggle to find resources to support their child’s development. That’s where an ABA provider center can step in to help. An established ABA therapy provider can offer families personalized treatment plans, including one-on-one therapy sessions and hours explicitly prescribed to the severity of their child’s experience.
With a dedicated and expert ABA provider, parents will receive structured guidance and instruction to reinforce skills learned during therapy at home. By utilizing an approach like applied behavior analysis, families can feel empowered knowing they are making good choices for their kids.
ABA Centers of America Supports All Neurodiversity
For those dealing with profound autism, it can be a complex and overwhelming process. Fortunately, ABA Centers of America is ready to help challenging cases because we believe every child deserves the best care possible. Our expert ABA team focuses on fostering strengths your child already has to help them reach their goals and learn incredible life skills.
As autism experts, we continually strive to learn more about profound autism to provide better support and care to those affected. We embrace the unique needs of every client and work tirelessly to evaluate, design, implement, and monitor progress to ensure they succeed in the best way for them.
The more we serve, the greater our reach.
For more information about ABA therapy with us and our impact on the lives of our incredible clients, reach us at 844-923-4222 or visit us here.
