Introduction
With high and increasing prevalence of ASD (autism spectrum disorder) in adult, there are increasing concerns about the poor long-term outcome for so many individuals with this condition. Some costs estimated by health economists are around $461 billion per year by 2025. These cost mostly include medical care, residential or supported living accommodation and productivity loss, both by caregivers and by individuals themselves. Because adults with ASD often require some degree of lifelong reliance on their parental caregiver but as the parents or parental figures age these adults may need caregiving assistance from social support networks. These services don’t always come free or in an appropriate price.
Many of the caregiving parents were reported to be isolated and have decreased access to informal social support. These diminished links to informal social support contributed to feelings of social isolation, a perception of disconnection from family members, perceptions of insufficient system support, and a lack of societal understanding of caregiver burden. The extent of this emotional burden experiences by some of the parents included sadness, grief, mild depression, guilt, blame, and suicidal ideation.
Some of the adults struggling with ASD will strive toward independence with parental support, while others will remain dependent on their aging parents for care. Individuals with ASD experience communication deficits may misread nonverbal interactions, have difficulty building friendships, are highly sensitive to their environment, and are dependent upon routines. A surveillance study conducted in conjunction with the Centre for Disease Control estimated the prevalence rate of ASD among children at 1 in 68 (1 in 42 males, 1 in 189 females), indicating that prevalence rates have increased 10–17% annually.
Social Outcomes in Adulthood
Assessments based on ‘normative’ measures of social functioning and outcomes in ASD (i.e. objective measures of employment, independence, social participation and relationships) have concluded that, even among cohorts of average intelligence, most individuals remain highly dependent on others for their care, social contacts are limited and employment rates are extremely low. Moreover, adults with ASD are more economically, educationally and socially disadvantaged than adults with other developmental or intellectual disabilities.
Transitional lifestyle
The transitional lifestyle was defined by two primary transition points: (1) the transition to primary adult disability funders, and; (2) the transition from secondary educational systems (high school). Participants report of the transition to adulthood created a multifaceted construct that expanded beyond entry into adulthood and subsumed the lifespan. Although participants were required to move to adult based funders at the age of 18 years, the transition from secondary educational systems was variable based upon the maximum age of admission set by the local education authority. In this jurisdiction, individuals aged out of the secondary school system at the age of 20. Effectively, this process created a progression by which individuals could potentially be engaged in some form of transition across a span of 2 years. However, not all individuals had the opportunity to transition to an adult-based program following the completion of their secondary education. Further, as individuals with ASD (i) transitioned into post-secondary programs, (ii) required changes to funding plans and /or (iii) engaged with various health, vocational, and social organizations, individuals and their caregivers were placed in a position to renegotiate contracts and arrangements of support. However, as Individuals transitioned to adult systems of care, the degree of service provision shifted according to system mandates and working definitions of disability. At times, participants were offered reduced services relative to their perception of need or in some cases, they were deemed ineligible for services as they did not meet funder/service provider eligibility criteria, which was largely related to cognitive impediment thresholds for adult-based supports. Hence, these individuals did not fall under the system’s working definition of disability or functional impairment, despite meeting these criteria for such service in childhood/adolescence.
Impacts of Insufficient Services
As individuals with ASD aged, families and caregivers recognized the limitations of existing care, systemic engagement, and insufficient opportunities for community engagement for adults with ASD. A frequent lack of systemic engagement required adults with ASD and their caregivers, to determine and often cobble together care arrangements that attempted to meet individual needs. Those individuals who qualified for public services as determined by public funders, were encouraged to utilize funding to create an individualized care plan or “self-managed care”.
Autism Symptom Severity
In the Swedish study higher levels of autism symptomatology, both in childhood and adulthood, were associated with reduced independence, lower rates of employment and more limited social relationships.
Some of the factors that may play a role in the symptom’s severity include:
Gender: (The role of gender remains uncertain as most studies involve so few women.)
Family/environmental factors: Higher levels of inclusion in social and academic activities in school were associated with more positive outcomes. Greater maternal praise/positivity in childhood also predicted higher levels of nonverbal communication and social reciprocity in adulthood; increases in maternal praise over time were associated with decreases in externalizing behaviors. In addition, improvements in mother– child relationships were related to a decline in behavioral and social problems. More recently, the specific impact of stress was associated with more severe autism symptoms and poorer coping in adulthood.
Variables associated with adult mental health: Although there has been little systematic exploration of factors related to mental health in adults with ASD, there is some evidence of an association between poor mental health and poorer social functioning, lower life satisfaction and higher levels of autism symptoms.
Factors Related to Social Outcomes in Adulthood
Mental health: Data on rates of psychiatric disorders in ASD are highly variable. Intellectual and verbal functioning in childhood are among the strongest prognostic indicators in ASD. Individuals with childhood IQ lower than 70, or who fail to develop functional speech, show less improvement in cognitive or social skills, and greater increases in ritualistic behaviors over time than individuals with an average IQ in childhood. Unsurprisingly, too, persisting communication and intellectual impairments in adulthood (especially if associated with epilepsy) are associated with low levels of social attainments and independence.
Mortality and suicide in adulthood: Many major chronic medical conditions occur significantly more frequently in adults with ASD than in the general population, and mortality risks are also higher. More importantly, we are a long way from identifying the individual, family or environmental factors that enhance resilience and ensure social and psychological wellbeing in adulthood. High-quality adult outcome research must be a priority if we are to meet the needs of current and future generations of adults with ASD.
Conclusion
It is evident from this review that individuals with ASD continue to face many challenges throughout adulthood. Current social and health services for adults are often inadequate, resulting in high levels of stress for both individuals themselves and their families. We still do not know with any certainly what proportion of individuals manage to attain adequate levels of social integration as adults. Individuals with ASD and their families require sufficiently resourced systems of financial, health/mental health, and community supports which is particularly important at tenuous junctures such as the transition to adulthood. These findings offer insight into pathways and barriers to funding, supports and community integration. Through greater service provision, individuals with ASD may be enabled to more fully engage in community life and importantly experience greater well-being in the aim of sustained lives of quality and integration. To that end, expanded access to, and sufficiency of, services and resources offer an important means of redressing barriers to community engagement among people with ASD. The absence of greater funding and community services, individuals with ASD were reported to “disappear” from their community due to a lack of engagement with their peer groups, community, post-secondary and vocational training, and the workforce. Despite funding status, the lack of services remained a major concern for study participants as even if funded, families reported insufficient services relative to need.
Abolfazl Adhami
CEO of IMUTISM
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