JAN 01, 2019 10:33 AM PST

Growing Old With Autism

WRITTEN BY: Dena Aruta

While ASD spectrum disorder (ASD) is a significant disability many people are aware of, the term was practically unheard of half a century ago, fewer children and infants were diagnosed with ASD as recent as 30 years ago. Due to the lack of understanding and awareness of this neurodevelopment disorder, resources were non-existent decades ago for individuals within this population. Today, the problem persists, especially for adults over 50, who have been diagnosed with ASD and are struggling for support as they age. Because many adults with ASD have more severe difficulties with daily activities of living, there needs to be an emphasis placed on creating resources for this rapidly growing population of adults.

ASD is usually diagnosed in childhood; thus, it makes sense that many older adults (specifically, individuals ages 45-65 in the Baby Boomer group) may have ASD but were never diagnosed simply due to physician lack of awareness of the disorder. Even today, despite the rise in awareness of children with ASD, there is a paucity of research on older adults with ASD. A lack of accessible resources available for these individuals is a trend that has been prevalent to this population throughout their entire lives. It leaves autistic individuals over 50-years-of-age with a lack of viable plans for long-term and short-term care. With the significant rise of aging of adults in the U.S.., individuals diagnosed with ASD are especially vulnerable and require more help than their non-autistic counterparts. The problem is not solely based on the lack of awareness of ASD, but also, that there is not enough awareness of the unique needs of aging autistic individuals as well as programs that support their progression into adulthood and old age.

By the year 2060, it is estimated that the population within the U.S.. will reach 404 million with the number of adults over the age of 65 at approximately 98 million. Older adults will represent 24% of the total U.S. population. Also, individuals with intellectual disabilities are significantly more underprivileged, vulnerable, and disadvantaged. People with ASD are living longer because of the increasing life expectancy rates (age 79 in 2013), which includes those with ASD. Many adults with ASD live nearly the same lifespan as non-autistic individuals. The relatively rapid increase of aging adults with complex, chronic medical and mental health problems has led to inadequate healthcare services for geriatric patients.

Due to the scarcity of research studies on aging adults with ASD, the statistics regarding factors needed for the development of federal, state, and local programs are unclear. Mukaetova-Ladinska et al. note that ASD is “one of the most widely studied developmental disabilities” and is considered as “one of the most severe childhood neuropsychiatric disorders"; however, little research has been done on ASD in older adults. There are many unknown factors concerning the epidemiological, biological, psychological, and social aspects involved with ASD in older adults.

In the U.S.., adults with intellectual disabilities, such as those with ASD, face compounded stigmatization because they are seen as dependent or unable to care for themselves, but that is not always the case. Society as a whole has changed their views on the abilities of those with ASD, and many go on to obtain university degrees, enjoy fulfilling employment, and for people with milder forms of ASD, live independently. Families that support a person with ASD, who requires a permanent caregiver, need support early into their loved one's diagnosis to assist them with services in areas they may not be able to provide at home. As the person ages, he/she will need the same age-related preventive services as would any elderly individual. The five areas relevant to healthy aging include social activities, access to housing, preventive healthcare, ability to work, and special care for conditions like dementia and Alzheimer's disease.

In the past decade, there have been numerous advances in the understanding of ASD regarding genetics, neurobiology, intervention, and early diagnosis. Recent increases in the rates of ASD have created an urgent need for further research to transform breakthroughs into practical, evidence-based treatment options for all those dealing with ASD. Emphasizing these issues can help expand knowledge about the causative mechanisms and allow for the development of biological and psychosocial interventions to reduce the burden of ASD on affected patients and their families.

When comparing children and adults with ASD, there are few studies designed to explore treatment options for adults. In fact, research on treatment for adults with ASD is probably the least developed area studied for this age group. The absence of evidence-based treatments along with government mandates that end special education services when an individual reaches 21 years of age indicates a critical need to create assessment, support, and treatment services. Core symptoms and behavioral problems often improve during adolescence but may stop or reverse when they transition into young adulthood. Prospective, longitudinal cohort studies that take into consideration successful outcomes will be critical to understanding developmental needs as ASD patients age.

By addressing the challenges these adults face living with ASD, the number of interventions will increase as well as the expansion of current services. For those who have limited cognitive and verbal abilities and are unable to take care of themselves, long-term reliance on their parents and caregivers is frequently the case with adults with ASD. Those who care for children with ASD are usually their greatest supporters, and many of the treatment options during childhood, such as daily living skills, communication, and social interaction, may still need to be taken care of into adulthood. Also, the focus of these treatments that include independence in areas of daily living is frequently a primary concern. Finding an arrangement that allows positive progress after their caregivers are not capable of maintaining this role may require the employment of group homes and structured employment which will keep adults with ASD progressing and stimulated.

Treatments for adults with ASD, in general, will likely have many different goals than those for affected children. Adult-specific programs may include supporting the transition from secondary education into a school or work program, vocational training, and discussing living independently. While children’s treatment involves providers and parents that make medical and social decisions, goals for adults are more geared toward the patient and require more individual quality-of-life decisions including management of symptoms and self-acceptance.

Also, treatment of adults with ASD can be geared less toward the medical model of interventions and more with the “neurodiversity” model. It involves adults with ASD leading the programs and makes the case that neurological disparities in ASD are normal variations that should be celebrated and accepted rather than thinking of it as a disease that needs to be cured. The “neurodiversity” movement is not against treatment; however, it recognizes the need to increase positive goals and emphasize potential directions for future research. Possible areas include emphasizing self-acceptance and self-advocacy. One indication of this view is the need to have people advocating for increased understanding, tolerance, and respect for people with ASD. The success of programs that include peer training involves educating developing children about ASD. This is a testimony to the potential of this interventional approach. Adults with ASD can maintain a role in this regard by participating in becoming their own advocates with mentors who are adults with ASD that have already transformed into this area. The education of adults with ASD in self-advocacy as a part of their treatment also emphasizes awareness and strength-building, which are ideas that apply to all levels of cognitive abilities.



About the Author
  • After earning my Bachelor of Science degree in biology/chemistry from Virginia Polytechnic Institute and State University (aka Va. Tech), I went on to complete clinical rotations in laboratory medicine at Roanoke Memorial Hospital. I spent the next 21 years working in healthcare as a clinical microbiologist. In 2015, I combined my fascination with medicine and passion for writing into a freelance career, and I haven't looked back. Even though my expertise is in microbiology and infectious diseases, I'm adept at writing about any medical topic. Being a freelance writer allows me to pursue a career where I can work at home with my two feline assistants, Luke and Grace. I'm a firm supporter of animal rights and volunteer for a local rescue during my free time. 
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