Profound Autism Symptoms, Challenges & Therapies

Understanding Profound Autism

The term "profound autism" is relatively new in the field of autism research. Despite its novelty, it is vital to understand what it entails, the communication challenges these individuals face, and the daily living struggles they grapple with.

Definition and Characteristics

"Profound autism" was introduced in 2021 by the New Lancet Commission Report. This term is used to distinguish individuals with higher support needs, describing them as those with an IQ below 50 and unable to speak for themselves. These individuals require full assistance from an adult in their daily lives.

This level of autism is characterized by severe intellectual disability and significant communication challenges. The individuals might struggle with social interaction and often require extensive support to navigate their environment effectively.

Communication Challenges

Individuals with profound autism often exhibit limited verbal skills. Some may not speak at all, thus relying on other forms of communication. These can include gestures, body language, or augmentative and alternative communication (AAC) devices. The use of AAC devices can help bridge the gap in communication by providing a means for non-verbal individuals to express their needs and thoughts [1].

This significant reliance on non-verbal methods of communication can make it challenging for these individuals to convey their needs or desires effectively, leading to potential frustrations and misunderstandings.

Daily Living Struggles

Profound autism symptoms also extend into the realm of daily living. Individuals with profound autism may find it challenging to perform basic self-care tasks such as dressing, eating, or personal hygiene. They may also have difficulty interacting socially with others and may face obstacles in understanding and responding to their environment effectively [1].

Due to these challenges, individuals with profound autism often require consistent, round-the-clock care and support. This underscores the importance of having a strong support system in place, in the form of caregivers, therapists, and medical professionals.

Understanding profound autism is a stepping stone towards better advocacy, support, and care for these individuals. It highlights the need for tailored interventions and therapies that cater to their unique needs and challenges.

Health and Care Considerations

Managing the profound autism symptoms involves a comprehensive understanding of the health and care considerations associated with the condition. From epilepsy and seizures to behavioral challenges, to therapeutic approaches, there are several aspects to consider.

Epilepsy and Seizures

Individuals with profound autism may experience epileptic episodes, which can vary in type and severity. Epileptic seizures may present as convulsions, staring spells, or momentary lapses in awareness. These episodes require immediate medical attention and ongoing management to ensure the safety and well-being of the individual.

Behavioral Challenges

The behavioral challenges associated with profound autism can often manifest physically. For example, individuals with this condition may experience gastrointestinal issues, which can go undetected due to communication difficulties, potentially leading to worsened behavioral problems. In addition, they may require 24-hour care, face challenges with routine changes, aggression, self-injury, and wandering away, and typically cannot live independently.

Therapeutic Approaches

Addressing the unique needs of individuals with profound autism involves a combination of various therapeutic approaches. ABA therapy, for instance, can be highly beneficial. It provides structured, individualized interventions to address their specific needs and challenges. ABA therapy supports individuals by conducting functional assessments, targeted interventions, providing a structured learning environment, breaking down skills, using visual supports, teaching alternative communication methods, and reducing challenging behaviors [1].

In addition to ABA therapy, treatment may also involve medications for anxiety and related issues, non-medical therapies like sensory integration therapy, and creating structured, low-stress environments to minimize sensory challenges [2].

Overall, the care considerations for profound autism symptoms involve a blend of medical interventions, behavioral therapies, and supportive environments. Understanding these aspects can help caregivers and professionals provide more effective support and improve the quality of life for individuals with profound autism.

Mental Health and Autism

Mental health is a significant aspect to consider when discussing profound autism symptoms. The high comorbidity of autism spectrum disorder (ASD) with other psychological disorders reveals a heightened vulnerability to mental health challenges in this population.

Risks and Impacts

Individuals with ASD may be at high risk for experiencing stressful and traumatic life events, which can negatively impact mental health. This can lead to the development of comorbid psychopathology and/or worsening of core ASD symptoms. Further, trauma and stressful life events may contribute to the development of comorbid mental health disorders in individuals with ASD. This highlights the need for comprehensive and sustained mental health support for individuals dealing with profound autism symptoms.

Importance of Support

With the high rates of comorbidity between ASD and other psychological disorders, including depression and anxiety, it's clear that standard behavioral approaches are not adequately addressing issues related to mental health in this population. Therefore, mental health support is crucial in the management of ASD. Providing the necessary support and interventions can help reduce the impact of stressful life events and improve the overall quality of life for individuals with ASD.

Interventions and Therapies

Various interventions have shown promise in addressing mental health challenges in individuals with profound autism. Cognitive Behavioral Therapy (CBT) based interventions have shown promise in treating social functioning and co-occurring symptoms of anxiety and depression in high-functioning autistic adults. These interventions have led to improvements in social skills, interactions, responsiveness, empathy, anxiety levels, and quality of life.

Programs such as the Program for the Education and Enrichment of Relationship Skills for Young Adults (PEERS YA) and the Acquiring Career, Coping, Executive Control, Social Skills program (ACCESS) have demonstrated significant improvements in social skills, social engagement, empathy, and social anxiety [4].

Furthermore, Mindfulness-Based Interventions (MBI) have shown promise in reducing anxiety, depression, and rumination in high-functioning autistic adults. These interventions focus on present thoughts, emotions, and perceptions with acceptance and without evaluation, aiming to increase psychological flexibility.

Online interventions, such as CBT and MBT delivered in an online setting, have demonstrated effectiveness in reducing anxiety symptoms in high-functioning autistic adults. These interventions offer increased accessibility and convenience and may be a cost-effective alternative to traditional in-person interventions.

Despite the promising results, further research is needed to establish stronger evidence for psychosocial interventions in high-functioning autistic adults, including well-controlled randomized controlled trials with larger sample sizes. Future studies should also explore adaptations to interventions that cater to the unique needs of autistic adults and investigate the sustainability of intervention effects over longer time periods.

Prevalence of Profound Autism

The prevalence of profound autism symptoms is an essential aspect of understanding this condition's overall impact. By examining the global statistics, variations across gender and ethnicity, and the experiences of caregivers, we gain a more comprehensive perspective on profound autism.

Global Statistics

The prevalence of profound autism varies widely across different samples. Data ranges from 11% to 48%, with the highest prevalence found in two United States samples from the 1990s (48% in the EDX sample and 35% in the AAA sample). More recent samples from Western Europe showed a prevalence of around 20% [5].

Gender and Ethnicity Variances

There are notable differences in the prevalence of profound autism by gender, race, and ethnicity. In three of the six samples, a higher proportion of females met the criteria for profound autism than males. In some samples, a higher proportion of individuals of color met the criteria for profound autism compared to white individuals.

Caregiver Experiences

Caregivers of adults with profound autism report experiencing stigma both from society at large and from medical professionals and service providers. They express frustration about the lack of appropriate services, difficulty finding housing and activities, and inadequate support and staffing. These caregivers also face challenges in healthcare settings, encountering professionals with limited awareness of autism or associated behaviors.

Caregivers describe feeling isolated and experiencing stigma in their communities due to their children's behaviors. They also highlight the importance of community engagement and peer support for their adult children's well-being [5].

The voices and perspectives of caregivers of adults with profound autism are essential in policy discussions and research. Their experiences of stigma and service challenges should be considered to develop effective support systems for individuals with profound autism and their families.

Advocacy and Support

When discussing profound autism symptoms, it's important to highlight the efforts made in advocacy and support. This includes addressing stigma, fostering community engagement, and understanding the perspectives of caregivers.

Addressing Stigma

Stigma is one of the main challenges faced by individuals with profound autism and their caregivers. Caregivers have reported experiencing stigma both from society at large and from medical professionals and service providers. This can lead to feelings of isolation and frustration due to the lack of appropriate services, difficulty finding housing and activities, and inadequate support and staffing. Additionally, they faced challenges in healthcare settings, encountering professionals with limited awareness of autism or associated behaviors [5].

To combat this, it's vital to promote awareness and understanding of profound autism symptoms and the challenges faced by those living with it. This can be done through education programs, awareness campaigns, and policy changes. The aim is to create a society that is more accepting and supportive of individuals with profound autism and their caregivers.

Community Engagement

Community engagement plays a crucial role in supporting individuals with profound autism and their caregivers. Caregivers have highlighted the importance of community engagement and peer support for their adult children's well-being. This can provide a sense of belonging and contribute to an improved quality of life.

Community engagement can take many forms, such as participation in local events, support groups, and online communities. It also includes the creation of inclusive spaces and activities that cater to the needs of individuals with profound autism. These efforts can help to reduce feelings of isolation and provide opportunities for social interaction.

Caregiver Perspectives

The voices and perspectives of caregivers of adults with profound autism are essential in policy discussions and research on the needs of this population. They provide valuable insights into the lived experiences of individuals with profound autism and highlight areas where support and services are lacking.

Stigmatization experiences and service challenges faced by caregivers should be considered to develop effective support systems for individuals with profound autism and their families. This includes addressing gaps in healthcare, housing, and community services, as well as providing adequate support and resources for caregivers.

Overall, advocacy and support for individuals with profound autism and their caregivers are crucial in creating a more inclusive society. This involves addressing stigma, promoting community engagement, and considering the perspectives of caregivers. By doing so, we can ensure that individuals with profound autism receive the support and understanding they need to thrive.

References

[1]: https://www.abacentersga.com/blog/understanding-profound-autism/

‍[2]: https://www.verywellhealth.com/what-is-severe-autism-260044

‍[3]: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6061115/

‍[4]: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10808656/

‍[5]: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10839016/