Profound Autism Symptoms

Discover more about profound autism symptoms, treatment approaches, and the future outlook.

steven zauderer
Steven Zauderer
May 3, 2024
9 min read
min read

Understanding Profound Autism

To fully comprehend the unique challenges faced by individuals with profound autism and their caregivers, it's essential to first understand what profound autism is, its defining characteristics, and its prevalence.

Definition and Characteristics

Profound autism is a proposed category for children on the autism spectrum who exhibit severe impairment. This includes children possessing an IQ of less than 50, or who are nonverbal or minimally verbal. These individuals typically require assistance with daily living tasks and round-the-clock support for safety.

Moreover, children with profound autism are often excluded from autism research studies that generally require participants to have an IQ of 70 or higher. This exclusion underlines a critical gap in research and highlights the need for studies specifically aimed at this group [1].

Prevalence and Demographics

In a recent study conducted by the Centers for Disease Control and Prevention (CDC), it was found that 26.7 percent of a group of 20,000 8-year-old children on the autism spectrum would meet the criteria for profound autism.

Interestingly, the prevalence of profound autism was found to be higher in girls than in boys, higher in racial and ethnic minorities than in white children, and higher in children from low-income families than in those from affluent families. This disparity may be a result of fewer children in these groups, who are mildly affected by autism, being diagnosed.

Demographic Prevalence
Overall 26.7%
Girls Higher
Boys Lower
Racial and ethnic minorities Higher
White children Lower
Low-income families Higher
Affluent families Lower

Considering the prevalence and demographic distribution of profound autism is an important step towards ensuring that adequate services exist for this special group of individuals. As the understanding of profound autism symptoms expands, the hope remains for more effective and tailored strategies for support and care.

Treatment Approaches for Profound Autism

Treatment plans for individuals with autism spectrum disorder (ASD), including profound autism, should cater towards the individual's unique strengths and challenges. The goals are set to reduce symptoms interfering with daily functioning and improve the quality of life. Here, we look into the three key treatment approaches: behavioral therapies, speech and language therapy, and occupational therapy.

Behavioral Therapies

Behavioral approaches, particularly Applied Behavior Analysis (ABA), are widely accepted among educators and healthcare professionals for treating symptoms of ASD. These approaches have the most evidence backing them [2].

ABA focuses on improving specific behaviors such as communication, social skills, reading, and academics, as well as adaptive learning skills, such as fine motor dexterity, hygiene, grooming, domestic capabilities, punctuality, and job competence. ABA is effective for children and adolescents with autism and can be offered in a one-on-one setting or group setting.

Speech and Language Therapy

Speech and Language Therapy is a common developmental therapy for individuals with ASD, helping to improve speech and language skills. It is beneficial regardless of whether the individuals communicate verbally or non-verbally.

This therapy can help individuals with profound autism symptoms in various ways. For instance, it can help them understand and use gestures for communication, develop conversation skills, understand and use a wider vocabulary, and use communication devices if needed.

Occupational Therapy

Occupational Therapy aims to teach skills for individuals with ASD to live as independently as possible. The tasks include dressing, eating, bathing, and social interactions, contributing to improved daily functioning.

This therapy can help those with profound autism symptoms to develop fine motor skills needed for daily living, improve hand-eye coordination for activities such as dressing and eating, learn how to focus on tasks, and manage sensory integration issues.

The combination of these therapies, tailored to the individual's needs, can significantly improve the daily functioning and quality of life for those living with profound autism symptoms. It's important to note that the effectiveness of each therapy can vary from person to person, and adjustments may be needed over time to ensure the best outcomes.

Medication for Profound Autism

While there is no cure for profound autism, certain medications can be used to manage some of the symptoms associated with the condition. This section will explore the role of these medications, as well as some of the commonly used options.

Role of Medications

Medications for profound autism are typically used to manage the behavioral aspects of the condition, rather than the core symptoms. They are often used in conjunction with other treatment approaches, such as behavioral therapies, to provide a comprehensive treatment plan. These medications can help to reduce aggression, irritability, and self-injurious behaviors, which are commonly observed in individuals with profound autism.

Although these medications do not cure profound autism, they can significantly improve the individual's quality of life by reducing the severity of these disruptive behaviors. However, it's important to note that the effectiveness of these medications can vary between individuals, and they may also cause side effects that need to be monitored closely.

Commonly Used Medications

Risperidone and aripiprazole are two FDA-approved medications for the treatment of irritability in children with autism spectrum disorder (ASD) [source needed]. Risperidone, a second-generation antipsychotic, was the first drug approved by the Food and Drug Administration (FDA) to treat autism-related irritability. It has been shown to improve the number of tantrums, aggressive episodes, and self-injurious behaviors in children with ASD. However, it can also cause common adverse effects such as increased appetite, dizziness, drooling, drowsiness, and fatigue.

Aripiprazole, another psychotropic drug, has been shown to significantly improve irritability, social withdrawal, stereotypy, hyperactivity, and inappropriate speech in children with ASD. It was approved by the FDA in 2009 for the treatment of irritability in children (ages 6 to 17 years) with ASD.

Another medication that has been explored for its potential benefits in treating profound autism is oxytocin. This hormone has been found to enhance brain function and improve evaluations of socially meaningful stimuli in children with ASD.

Medication Approved Age Benefits Common Side Effects
Risperidone 5 years and older Reduces tantrums, aggressive episodes, and self-injurious behaviors Increased appetite, dizziness, drooling, drowsiness, fatigue
Aripiprazole 6 to 17 years Improves irritability, social withdrawal, stereotypy, hyperactivity, inappropriate speech Nausea, vomiting, constipation, headache, dizziness, an uneasy feeling
Oxytocin Not specified Enhances brain function and improves evaluations of socially meaningful stimuli Rare allergic reactions, breathing problems, chest pain

In conclusion, while medications can provide some relief from the behavioral symptoms of profound autism, it's important to remember that they are not a cure. They should be used as part of a comprehensive treatment plan that also includes behavioral therapies and other interventions. Always consult with a healthcare professional before starting any new medication.

Challenges Faced by Individuals with Profound Autism

People with profound autism face numerous challenges that extend beyond the common symptoms associated with Autism Spectrum Disorder (ASD). These challenges can significantly impact their daily life and require comprehensive assistance for both daily living and communication.

Daily Living Assistance

One of the primary challenges faced by individuals with profound autism is the need for assistance in daily living activities. These tasks can range from self-care activities like dressing, eating, and bathing to more complex social interactions. Occupational therapy plays a vital role in teaching these skills, contributing to improved daily functioning. The goal of this therapy is to enable individuals with ASD to live as independently as possible.

However, the level of assistance required can vary significantly based on the severity of the autism. Children with moderate autism can often achieve a level of independence with behavioral and occupational therapies, learning to perform self-care tasks and potentially hold jobs. They may still need support for daily needs, therapy, and medical care. In contrast, children with severe or profound autism typically require 24/7 care and supervision. They may learn basic self-care but will likely need assistance with activities of daily living and healthcare.

Behavioral and Communication Challenges

Behavioral and communication challenges are other common profound autism symptoms. These can manifest as tantrums, aggressive episodes, and self-injurious behaviors. Such behaviors can be distressing for both the individuals with profound autism and their caregivers.

Medications like Risperidone have shown improvements in reducing such behaviors in children with ASD. In an eight-week study conducted by McCracken et al., children treated with Risperidone showed improvements in the number of tantrums, aggressive episodes, and self-injurious behaviors compared to those given a placebo. However, it's important to note that like any medication, Risperidone has been associated with adverse effects such as increased appetite, dizziness, drooling, drowsiness, and fatigue.

Another medication, Aripiprazole, has been shown to significantly improve irritability, social withdrawal, stereotypy, hyperactivity, and inappropriate speech in children with ASD. This can significantly contribute to improving their quality of life and making daily management more manageable.

It's essential to remember that each individual with profound autism is unique, and the severity and manifestation of symptoms can significantly vary. Tailored interventions, consistent support, and understanding from loved ones and caregivers can make a substantial difference in managing profound autism symptoms and improving the quality of life for those affected.

Caregiver Experiences with Profound Autism

Navigating the landscape of profound autism can be a challenging endeavor, not only for the individuals experiencing it but also for their caregivers. This section sheds light on the various challenges, misunderstandings, and barriers caregivers of profoundly autistic individuals often face.

Stigma and Misunderstanding

One of the significant hurdles caregivers of profoundly autistic adults encounter is the stigma and misunderstanding surrounding profound autism in their communities. According to a study by NCBI, caregivers reported experiencing at least one instance of perceived stigma. Common misconceptions often revolve around an incomplete knowledge of autism and an unnecessary focus on higher cognitive abilities and talents associated with autism.

This lack of understanding and persistent stigma can result in the marginalization of individuals with profound autism, limiting their access to healthcare and other vital services. It also places undue stress on their caregivers, who often feel misunderstood or unsupported by their communities.

Support Services and Barriers

Apart from societal stigma, caregivers also grapple with systemic barriers, particularly in terms of support services for profoundly autistic adults. Caregivers have expressed frustration with limited support for housing and activities, coupled with challenges with health and healthcare experiences. Limited access to appropriate staff, respite, and suitable housing placements are common barriers faced by families [4].

Moreover, caregivers have reported inadequate services and staffing as significant issues, including difficulties finding appropriate support staff, limited access to respite and in-home care, and high staff turnover rates at day programs and residential programs. These factors contribute to a challenging caregiving environment, increasing the stress and burden on caregivers while compromising the quality of care and support available to profoundly autistic adults.

Understanding caregiver experiences, challenges, and barriers is integral to improving the lives of individuals with profound autism. Increased awareness, understanding, and systemic changes are required to address these issues, ensure comprehensive support for caregivers, and ultimately enhance the quality of life for individuals exhibiting profound autism symptoms.

Future Outlook for Profound Autism

The future outlook for profound autism is gradually becoming more hopeful, with increased research and awareness, and stronger advocacy and support for affected individuals and their families.

Research and Awareness

In the realm of research, the focus has shifted toward creating a separate category for profound autism. This is to ensure that these children have access to the services they need. Defining the group and estimating the number of children who fit this category is a step towards making sure enough services exist.

Supporters of this new classification argue that the needs of children with profound autism are at risk of being neglected because they are drastically different from those who are less affected. Furthermore, these individuals are often excluded from research about autism because most studies require that the study participant have an IQ of 70 or higher.

The prevalence of profound autism has been found to vary widely across samples, ranging from 11% to 48%. There were also notable differences in prevalence by gender, race, and ethnicity [4]. This highlights the need for more comprehensive studies and research to better understand and address the unique symptoms and needs associated with profound autism.

Advocacy and Support

On the advocacy front, the fight against the stigma and lack of understanding of profound autism is ongoing. This is critical because these factors can result in marginalization and limited access to healthcare, residential, and other important services for individuals with profound autism and their families [4].

Efforts are underway to increase awareness and understanding of profound autism symptoms, and to advocate for the rights and needs of those affected. This includes campaigning for better access to necessary services, and promoting inclusivity and acceptance in all aspects of life, from education and employment to social and recreational activities.

In conclusion, while there are still many challenges to overcome, the future outlook for profound autism is brightening. With ongoing research, increased awareness, and vigorous advocacy, there is hope for improved quality of life and opportunities for individuals with profound autism and their families.






steven zauderer

CEO of CrossRiverTherapy - a national ABA therapy company based in the USA.

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