What Happens To Severely Autistic Adults?

Discover the reality of severely autistic adults - their challenges, triumphs, and the support they need for a fulfilling life.

June 3, 2024

Understanding Severely Autistic Adults

Severely autistic adults face a unique set of challenges that can significantly impact their daily lives and overall well-being. Understanding their living arrangements and support systems, as well as the challenges they face, is crucial in providing appropriate care and assistance.

Living Arrangements and Support

The living arrangements for severely autistic adults can vary depending on their individual needs and abilities. Many adults with autism live independently in their communities, without the need for additional support. These individuals are capable of managing their daily lives and maintaining their wellness and safety. This independent living may involve residing in their own apartments or houses, with limited outside support services. While they may require assistance with complex problem-solving issues, day-to-day living skills are typically managed independently.

For some severely autistic adults, shared living arrangements provide an alternative option. In these situations, an adult with autism shares a private family home with dedicated caregivers. This arrangement aims to replicate a private home experience and encourages familiar connections with the caregivers. This type of living arrangement can provide a sense of stability and support for individuals who may require more assistance in their daily lives.

Challenges Faced by Severely Autistic Adults

Severely autistic adults encounter a range of challenges that can impact various aspects of their lives. These challenges may include difficulties in communication, sensory sensitivities, anxiety, and social interactions. Communication difficulties can hinder their ability to express their needs and understand others, making it essential to find appropriate methods of communication that work for each individual.

Sensory sensitivities can also be a significant challenge for severely autistic adults. They may experience heightened sensitivity to certain sounds, lights, textures, or smells, which can cause discomfort or distress. Understanding and accommodating these sensory sensitivities can contribute to their overall well-being.

Anxiety is another common challenge faced by severely autistic adults. Changes in routines or unfamiliar environments can trigger anxiety and stress. Providing a structured and predictable environment, along with individualized support, can help alleviate anxiety and promote a sense of security.

Social interactions can be challenging for severely autistic adults, as they may struggle with understanding social cues, nonverbal communication, and building relationships. Encouraging opportunities for social engagement and providing social skills training can help them navigate social interactions more effectively.

By recognizing and addressing these challenges, caregivers, professionals, and support systems can provide the necessary assistance and support to enhance the quality of life for severely autistic adults.

Support Services for Severely Autistic Adults

When it comes to supporting severely autistic adults, a multidisciplinary approach is essential to address their unique needs and provide appropriate support. This approach involves a collaborative effort from various healthcare professionals, caregivers, and community resources. By working together, they can ensure that individuals with severe autism receive comprehensive care and support.

Multidisciplinary Approach

A multidisciplinary approach involves a team of professionals with different areas of expertise coming together to provide comprehensive support for severely autistic adults. This team may include:

  • Psychiatrists and Psychologists: These professionals can assess and treat any mental health challenges that individuals with severe autism may experience. They can provide therapy, counseling, and medication management when necessary.
  • Speech and Language Therapists: Communication difficulties are common among individuals with severe autism. Speech and language therapists can help improve communication skills, including speech, language comprehension, and social communication.
  • Occupational Therapists: Occupational therapists focus on developing daily living skills, fine motor skills, and sensory integration. They work with individuals to enhance their independence and ability to engage in everyday activities.
  • Behavior Analysts: Behavior analysts specialize in understanding and modifying behavior. They create behavior intervention plans tailored to the specific needs of individuals with severe autism, helping them develop appropriate behaviors and reduce challenging behaviors.
  • Special Education Teachers: These professionals provide specialized education and support for individuals with severe autism. They create individualized education plans (IEPs) that address the unique learning needs of each individual.

Promoting Independence and Autonomy

Promoting independence and autonomy is a fundamental aspect of supporting severely autistic adults. By focusing on their strengths and abilities, individuals with severe autism can achieve a greater level of independence and self-sufficiency. Here are some strategies that can help promote independence:

  • Skill Training: Providing targeted skill training in areas such as self-care, communication, social skills, and daily living activities can empower individuals with severe autism to become more independent in their daily lives.
  • Assistive Technology: The use of assistive technology, such as communication devices or visual schedules, can enhance communication and facilitate independent functioning.
  • Person-Centered Planning: Involving the individual and their support network in the planning process can ensure that goals and support strategies are tailored to their specific needs, preferences, and aspirations.
  • Community Integration: Encouraging participation in community activities and programs can foster social connections, develop new skills, and promote a sense of belonging for severely autistic adults.
  • Transition Planning: Transitioning to adulthood requires careful planning to ensure a smooth and successful transition. This includes exploring housing options, employment opportunities, and accessing necessary support services.

By employing a multidisciplinary approach and promoting independence and autonomy, support services can greatly enhance the quality of life for severely autistic adults. Organizations like Autism Speaks offer a range of resources and support for adults with autism, addressing various aspects of adult life such as therapy options, employment, housing resources, and community safety. With the right support, individuals with severe autism can lead fulfilling and meaningful lives.

Transitioning to Adulthood

As individuals with autism reach adulthood, they face unique challenges and opportunities. Transitioning to adulthood involves various aspects, including moving out and housing options, as well as exploring employment opportunities.

Moving Out and Housing Options

Moving out of the parents' home can be a significant milestone for autistic adults. It may symbolize independence and freedom, but it also brings financial and personal responsibilities. The decision to move out can be voluntary or forced, especially when parents are no longer able to care for their adult child on the autism spectrum [4].

The housing options for severely autistic adults vary based on their level of independence and support needs. Some individuals with autism live independently in their own apartments or houses, with little to no support services from outside agencies. In these cases, individuals often receive limited assistance for complex problem-solving issues rather than day-to-day living skills.

Alternatively, shared living arrangements provide another option for severely autistic adults. In this model, an adult with autism shares a private family home with dedicated caregivers, aiming to replicate a private home experience and encourage familiar connections with the caregivers.

The choice of housing depends on factors such as the individual's level of independence, support needs, affordability, government benefits, and family financial resources. It is important to consider these factors to ensure that the housing arrangement meets the individual's specific needs and promotes their overall well-being.

Employment Opportunities

Finding suitable employment is a critical step toward self-determination and financial independence for severely autistic adults. While employment rates for autistic adults are lower compared to other disability types, efforts are being made to improve employment prospects and support individuals with autism in the workplace.

Organizations such as Easterseals provide assistance to individuals with autism in assessing their skills, identifying employment goals, and providing training to help them achieve those goals [5]. Some employers and social service agencies have also begun prioritizing hiring and supporting autistic employees. For instance, companies like Microsoft and PetSmart have implemented inclusive hiring practices and support programs specifically tailored to autistic individuals.

It's important to note that the employment landscape for autistic adults can be complex. Factors such as the individual's skills, interests, and support needs need to be considered in finding suitable employment opportunities. Tailored support and accommodations in the workplace, such as modified interview processes or ongoing mentoring, can contribute to the success of autistic individuals in the workforce.

By addressing the unique challenges and opportunities associated with transitioning to adulthood, individuals with severe autism can navigate this phase of life with support and guidance, making strides toward independence, personal growth, and a fulfilling future.

Mental Health and Well-being

The mental health and well-being of severely autistic adults are of utmost importance in ensuring their overall quality of life. They may face unique challenges in this regard, requiring specialized support and understanding.

Mental Health Challenges

Autistic adults are at an increased risk of experiencing mental health problems, with anxiety difficulties being commonly reported among them and their family members. Research has shown that approximately 35% of autistic individuals between the ages of 18 and 44 had anxiety, with 77% meeting criteria for an anxiety disorder. This highlights the need for targeted interventions and resources to address anxiety and promote mental well-being in this population.

Medical Conditions and Primary Care

Severely autistic adults often experience elevated rates of medical and psychiatric conditions compared to the general population. They are at an increased risk for chronic diseases and are 3.4 times more likely to be diagnosed with obesity and diabetes mellitus compared to non-autistic individuals. These health conditions require vigilant monitoring and appropriate medical care to ensure optimal physical well-being.

However, accessing primary healthcare can be challenging for autistic adults. Caregivers have reported anxiety during medical appointments due to the unpredictability of the encounter, previous traumatic experiences, overstimulating sensory environments, and long wait times . Healthcare providers need to be trained in understanding the specific needs of autistic individuals and creating supportive and accommodating healthcare environments.

Promoting the mental health and well-being of severely autistic adults requires a comprehensive and multidisciplinary approach. This includes providing targeted interventions for anxiety and other mental health challenges, ensuring access to appropriate medical care, and creating supportive healthcare environments that take into account the unique needs and sensitivities of individuals on the autism spectrum.

By addressing these mental health challenges and providing appropriate medical care, society can support the well-being and overall quality of life of severely autistic adults.

Workplace Challenges

For severely autistic adults, the workplace can present unique challenges that may require understanding and accommodations. Two significant challenges faced by individuals with severe autism in the workplace are interacting with coworkers and sensory sensitivities.

Interacting with Coworkers

Interacting with coworkers can be challenging for severely autistic adults, as they may struggle with social communication and understanding social cues. Their behavior may be perceived as unusual or annoying by others, which can lead to avoidance and negative talk from colleagues. However, it's important to recognize that individuals with autism can excel in their roles and be highly respected by their employers, especially when they are able to focus on tasks that align with their strengths.

To support severely autistic adults in interacting with coworkers, fostering a culture of inclusivity and providing education and awareness about autism can be beneficial. Encouraging open communication, empathy, and understanding among coworkers can create a more supportive and accepting work environment.

Sensory Sensitivities in the Workplace

Sensory sensitivities are common among individuals with autism, and the workplace environment can present challenges in this regard. Strong scents, bright lights, or loud noises can be overwhelming and disruptive to concentration and well-being. For example, certain scents like bleach or specific lighting can trigger negative physical reactions.

To create a sensory-friendly workplace, employers can make adjustments such as providing a quiet space or allowing the use of noise-canceling headphones. Adjusting lighting or minimizing strong scents in the office can also help alleviate sensory sensitivities. It is important to consult with the individual to understand their specific sensory needs and work collaboratively to implement appropriate accommodations.

By addressing workplace challenges related to interacting with coworkers and sensory sensitivities, employers can create a more inclusive and supportive environment for severely autistic adults. This, in turn, can enable individuals with severe autism to thrive in their roles and contribute their unique skills and abilities to the workforce.

Caregiving for Severely Autistic Adults

Providing appropriate caregiving is essential for the well-being and support of severely autistic adults. Caregivers play a crucial role in assisting with daily activities and facilitating educational and vocational support. Let's explore two key aspects of caregiving for severely autistic adults: assistance with daily activities and educational and vocational support.

Assistance with Daily Activities

Severely autistic adults often rely on caregivers for various aspects of their daily life, including personal hygiene, meal preparation, medication management, and ensuring a safe living environment. Caregivers provide the necessary support to help individuals with severe autism navigate their daily routines and maintain a good quality of life.

The level of assistance required varies depending on the individual's abilities and specific challenges. Caregivers may provide assistance with personal care tasks such as bathing, dressing, and grooming. They may also help with household chores, such as cleaning, cooking, and organizing. Additionally, caregivers play an important role in facilitating community engagement, helping individuals participate in social activities and access community resources.

Educational and Vocational Support

Severely autistic adults may face difficulties accessing appropriate educational programs, as traditional educational settings may not cater to their specific needs. Alternative educational options, such as special education programs and schools designed for individuals with severe autism, provide tailored curricula and individualized attention to develop essential life skills and functional academics.

Caregivers can collaborate with educators and therapists to support the educational journey of severely autistic adults. They can advocate for appropriate educational placements, ensure that Individualized Education Programs (IEPs) are effectively implemented, and provide additional support at home to reinforce learning.

Finding suitable employment opportunities can be challenging for severely autistic adults, but with appropriate vocational training and support, they can overcome obstacles and achieve meaningful employment. Vocational training programs focus on developing job-specific skills like communication, socialization, and task-oriented abilities, offering hands-on training in various industries.

Caregivers can play a vital role in facilitating vocational training and helping individuals transition into the workforce. They can assist with job searches, help individuals develop workplace skills, and provide ongoing support to ensure a smooth transition into employment.

By providing assistance with daily activities and facilitating educational and vocational support, caregivers contribute significantly to the overall well-being and success of severely autistic adults. Their dedication and support help individuals with severe autism lead fulfilling lives and reach their full potential.


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