What Happens To Severely Autistic Adults?

Explore what happens to severely autistic adults, from housing to job opportunities and mental health support.

By Brighter Strides ABA

June 19, 2024

Support and Services for Autistic Adults

Addressing the query of 'what happens to severely autistic adults?', it's essential to understand the range of support and services available to them. These services are geared towards aiding adults with autism to live productive lives and are offered by various organizations and state programs.

Resources Offered by Autism Speaks

Autism Speaks, a renowned organization in the field of autism advocacy, offers a variety of resources and supports for autistic adults. Their focus extends to crucial areas such as employment, housing, community living, therapy options, and navigating adult services. This breadth of services is designed to address the diverse needs of adults with autism, which is particularly important considering an estimated 1 in 45 adults in the U.S. have autism [1].

Among their offerings, Autism Speaks provides information, tools, and resources through the Autism Response Team (ART). This team works to connect individuals with autism, their families, and caretakers with the necessary support and guidance. They also host various networking groups focused on areas like employment, housing, and the transition to adulthood to aid autistic adults, their families, and caretakers [1].

State Variations in Adult Services

While organizations like Autism Speaks play a crucial role in providing resources and support, it's also important to understand the state-specific services available to autistic adults. These services can vary significantly depending on the state of residence, including the level and type of support, budget, and programs available. Some states might perform better in administering certain services than others [2].

Factors such as autism diagnosis, IQ levels, and geographical location significantly impact eligibility for these services. Once autistic individuals turn 22 years old, the entitlements they received as children under the Individuals with Disabilities Education Act (IDEA) disappear. This shift creates a "services cliff" for families transitioning into adult services, which are eligibility-based rather than entitlement-based. State and federal governments may or may not determine eligibility for specific services or funding for adults, and services might be reduced if budgets shrink [2].

Understanding these variations in support and services is critical to ensuring severely autistic adults receive the necessary help and resources to navigate their adult lives effectively.

Transitioning into Adulthood

As autistic individuals transition into adulthood, they face a significant shift in the support and services they receive. This transition is often marked by numerous challenges, especially for those who are severely autistic.

Challenges Post-IDEA

For many families with autistic individuals, the transition from adolescence to adulthood can be a daunting process, particularly due to the changes in the services and entitlements available. Once autistic individuals turn 22 years old, the entitlements they received as children under the Individuals with Disabilities Education Act (IDEA) disappear. This sudden withdrawal of support often creates a "services cliff" for families transitioning into adult services, which are eligibility-based rather than entitlement-based.

This "services cliff" can leave families and individuals feeling uncertain and overwhelmed about the future, given the drastic change in the approach to providing support and services. The shift from an entitlement-based system to an eligibility-based one often necessitates that individuals and families navigate complex application processes and requirements to access needed services.

Eligibility-Based Adult Services

Unlike children's services under IDEA, adult services for autistic individuals are not entitlement-based. Instead, eligibility for specific services or funding for adults is determined by state and federal governments and might be reduced if budgets shrink [2].

Services and support for autistic adults differ across states, impacting eligibility based on factors like autism diagnosis, IQ levels, and geographical location. Each state administers adult services differently, with variations in budgets, programs, and options available.

This variation adds another layer of complexity to the transition into adulthood for autistic individuals and their families. The availability and quality of services in their state of residence can significantly impact the level of support they receive.

State	Services	Budget
State A	High	High
State B	Medium	Medium
State C	Low	Low

One organization that is working to address these challenges is Autism Speaks, which continues to work on identifying solutions to meet the diverse needs of adults with autism, offering resources and services for important topics such as employment, housing, and therapy options.

The transition to adulthood for severely autistic individuals can be a challenging process, marked by significant changes in the services and supports available. However, by understanding these challenges and the resources available, families and individuals can better navigate this transition and advocate for the services and supports they need.

Employment Opportunities for Autistic Adults

As individuals with severe autism transition into adulthood, pursuing fulfilling employment is often a significant focus area. The key to successful employment lies in recognizing and utilizing the unique strengths of each individual. There are a variety of suitable job opportunities for both visual and non-visual thinkers.

Job Opportunities for Visual Thinkers

Visual thinkers often excel in roles that involve tasks aligning with their strengths, such as visualization and pattern recognition. Some of the jobs well-suited for visual thinkers include web development, graphic design, agricultural work, mechanic, and computer programming. These roles involve tasks that align with the visual thinking strengths typically found in individuals with autism Thrive Autism Coaching.

Job Title	Why It's Suitable for Visual Thinkers
Web Development	Involves visualizing and creating digital interfaces
Graphic Design	Requires visual creativity and innovation
Agricultural Work	Offers visual tasks and patterns in nature
Mechanic	Involves understanding and visualizing mechanical systems
Computer Programming	Requires visualizing and creating code structures

Job Opportunities for Non-Visual Thinkers

On the other hand, non-visual thinkers often excel in roles that involve logic, facts, and pattern recognition. Jobs such as data entry, accounting, IT support, lab or quality control technician, and office clerk positions may be well-suited for these individuals, especially those who excel in math, music, or facts Thrive Autism Coaching.

Job Title	Why It's Suitable for Non-Visual Thinkers
Data Entry	Requires precision and attention to detail
Accounting	Involve logical reasoning and numerical aptitude
IT Support	Requires problem-solving and understanding of technology
Lab or Quality Control Technician	Involves precise measurements and pattern recognition
Office Clerk	Requires organization and attention to detail

Many autistic adults find success in jobs that allow them to work independently and utilize their unique strengths in a company culture that supports neurodiversity Thrive Autism Coaching. Employers who value diverse and inclusive workplace cultures, have an understanding of autism, commit to continued learning, offer flexible work arrangements, and respect the talents and abilities of autistic individuals can contribute massively to the success of autistic adults in the workplace Thrive Autism Coaching. Companies like Bank, Freddie Mac, Goldman Sachs, Google Cloud, Travelers, Microsoft, Wells Fargo, and JPMorgan Chase have all established hiring programs or initiatives specifically focused on employing individuals with autism Workology.

Legal Rights and Decision-Making

Understanding the legal rights and decision-making tools available is crucial when considering the future of severely autistic adults. This includes understanding the differences between guardianship and supported decision-making, as well as exploring other legal documents that can protect their interests and rights.

Guardianship vs. Supported Decision-Making

Guardianship is a legally authorized relationship, often between a parent or appointed guardian and the autistic adult. In this arrangement, the guardian assumes legal responsibility for the daily and financial needs of the autistic adult. However, this is considered an extreme measure in the United States, which can lead to the loss of most, if not all, rights of an adult. When an individual turns 18, parents lose their "natural guardians" status over their child. If the parents believe the child is unable to make legal decisions at this age, guardianship can be pursued, allowing them to make decisions on behalf of the child regarding health, education, safety, and support [4].

As an alternative, supported decision-making (SDM) allows autistic adults to maintain control over their lives while receiving the support they need to make important decisions. SDM involves the autistic person having "supporters" ranging from family, friends, loved ones, and experts who help them understand situations and make informed decisions. This arrangement can increase feelings of pride, self-confidence, and happiness by enabling the individual to contribute to decisions regarding their life [3].

Housing and Residential Support

One common concern among parents of children with disabilities, such as severe autism, is the future of their children, particularly in terms of financial planning and the transition to adulthood. This concern extends to the question of housing and residential support for their children, which is an integral part of what happens to severely autistic adults.

Collaborative Studies on Housing Options

Several studies have explored housing options for adults living with autism and related disorders. The Urban Land Institute (ULI) Arizona, Southwest Autism Research & Resource Center (SARRC), Arizona State University (ASU) Stardust Center for Affordable Homes and the Family, and the ASU Herberger Institute School of Architecture and Landscape Architecture collaborated on a study called "Opening Doors" to discuss these options [5].

In 2020, the First Place Global Leadership Institute conducted a groundbreaking study, "A Place in the World," which serves as a definitive tri-sector resource for the housing industry, direct service providers, policymakers, scholars, researchers, and stakeholders. This study aimed to define market segments, best practices, and guiding principles for housing and service delivery models for individuals with autism and other neurodiversities [5].

Moreover, the Institute on Community Integration at the College of Education and Human Development, University of Minnesota, published a Policy Research Brief summarizing a national study on Home and Community Based Services (HCBS) for individuals with autism spectrum disorders.

These studies provide valuable insights into the potential housing options for adults with severe autism, helping to answer the question of what happens to severely autistic adults in terms of their living arrangements.

Legal Guidelines for Independent Living

Transitioning to independent living is a significant step for adults with severe autism. To assist with this transition, Autism Speaks provides a Legal Guidelines document prepared by Goodwin Procter, LLP, offering information on legal aspects relevant to individuals with autism.

This document provides guidance on the legal rights of adults with autism and the necessary steps to ensure a smooth transition to independent living. It includes information on housing rights, disability rights, privacy rights, and other legal matters relevant to adults with autism.

Understanding these legal rights and guidelines is crucial for adults with severe autism transitioning to independent living. By being aware of their rights and the available housing options, adults with severe autism can make informed decisions about their living arrangements and receive the support they need to lead fulfilling lives.

Mental Health Support for Autistic Adults

In the context of understanding what happens to severely autistic adults, it is important to focus on their mental health support. This includes the hurdles they face in treatment and support, as well as the significant impact of appropriate support.

Treatment and Support Challenges

Autistic adults are at a high risk of mental health problems, self-injury, and suicidal thoughts. Despite this, there are limited studies that explore their experiences of treatment and support for these difficulties. A survey of 200 autistic adults revealed that there are significant challenges in accessing treatment and support, due to a lack of understanding and knowledge about autistic individuals with co-occurring mental health difficulties. These difficulties are particularly pronounced in autistic adults without intellectual disabilities who are often deemed "high-functioning" or "too complicated", leading to long waiting lists, lack of funding, and lack of available services.

The lack of understanding among professionals about autism and mental health contributes to these barriers. Autistic individuals often struggle with recognizing and communicating their needs, and professionals may lack the necessary knowledge to effectively assess and support them. This highlights the need for professionals to receive proper training in autism and to adapt their support to meet the needs of autistic adults.

Impact of Appropriate Support

The type and level of treatment and support received have a significant impact on the well-being of autistic adults. The absence or inappropriate provision of support can lead to feelings of disempowerment, perceived burdensomeness, social exclusion, isolation, hopelessness, and an increased likelihood of viewing suicide as the only option [6].

Conversely, appropriate support and treatment can have a positive effect on the mental health and well-being of autistic adults. When support is individually tailored and accessible, it can improve various aspects of an individual's life, reduce thoughts of ending life, and foster a sense of inclusion rather than exclusion.

In summary, providing adequate and appropriate mental health support for severely autistic adults is crucial. It not only improves their quality of life but also reduces the risk of severe mental health issues. This highlights the need for more resources, improved professional training, and a better understanding of the unique challenges faced by this population.