Skip to content
photos related to autism and publications about it
Summary of Advances Cover 2018

Summary of Advances

In Autism Spectrum Disorder Research


Question 6: How Can We Meet the Needs of People with ASD as They Progress Into and Through Adulthood?

Autism spectrum disorder symptoms from ages 2 to 19 years: Implications for diagnosing adolescents and young adults.
Bal VH, Kim SH, Fok M, Lord C. Autism Res. 2018 Aug 12. [PMID: 30101492]

ASD is typically diagnosed between three to four years old. Less is known about how ASD manifests throughout the lifespan, and most screening instruments for ASD are based on how symptoms present in early childhood. Consequently, it is unclear if these instruments are sensitive to older age groups. In this study, researchers were interested in how the social and communication abilities of children with ASD changed from early childhood to young adulthood and if symptom trajectories through adolescence and adulthood would affect the sensitivity of current ASD screening and diagnostic tools.

The researchers used caregiver reports of 140 children followed from 2 to 19 years old that were diagnosed with ASD during childhood. The children were grouped by social-communicative symptoms: verbal, delayed speech, or minimally verbal. They assessed overall social-communication impairments as well as three subdomains, including nonverbal communication, development and maintenance of relationships, and socioemotional reciprocity. Socioemotional reciprocity is the ability to engage in back-and-forth social interactions such as gesturing, nodding, and using facial expressions.

The researchers found that, at 2 years old, most of the children had similar levels of impairment in all three subdomains regardless of their language ability grouping, and most showed significant improvement by age 19. The verbal group of children showed the largest increase in overall social-communication skills, while the minimally verbal group of children showed slower improvements. Although minimally verbal children had greater impairments in nonverbal communication at ages 2 and 3 than children in the other ability groups, they no longer significantly differed from their peers in this subdomain at age 19. Neither the children with delayed speech nor the minimally verbal children showed significant improvements in developing and maintaining relationships over time, while the verbal children showed improvements in this subdomain between ages 2 and 3 years, which were maintained throughout the study period.

All of the children’s socioemotional reciprocity improved over time. However, each group showed different timing of symptom improvement, which seemed to correlate with language development for each group. The delayed speech children showed the most improvement between ages 3 and 5 years, while the verbal children improved somewhat earlier, between 2 and 3 years. The minimally verbal children showed slower and steadier improvement in socioemotional reciprocity over the 17-year study period.

At age 19, the researchers assessed the young adults for a clinical diagnosis of ASD. Of the young adults who received an ASD diagnosis, nearly 14% had caregivers reporting no symptoms in at least one of the three subdomains. These findings suggest that young adults with ASD may not exhibit the same symptom patterns as younger children. Since many ASD screening tools are based on symptomology in children, a reduction in symptoms as children age into adolescence and young adults could inhibit accurate diagnoses for these older age groups. Future research studies need to assess screening tools that will accurately capture symptoms of ASD in older populations.

Psychiatric and Medical Conditions in Transition-Aged Individuals With ASD.
Davignon MN, Qian Y, Massolo M, Croen LA. Pediatrics. 2018 Apr;141(Suppl 4):S335-S345. [PMID: 29610415]

Individuals with ASD are at increased risk for co-occurring medical conditions, including seizures, gastrointestinal (GI) problems, sleep disturbances, and psychiatric disorders such as anxiety and depression. These symptoms are well-documented in children with ASD, but less is known about the prevalence of these co-occurring conditions in adolescents and adults. As children with ASD grow older and begin to transition into the adult health care system, it is important to understand their health service needs.

In this study, researchers collected data from adolescents and young adults, ages 14 to 25 years, who were insured by Kaiser Permanente Northern California for at least nine months of each year between 2013 and 2015. There were 4,123 individuals with a diagnosis of ASD included in the study. The ASD group was compared to a group of peers with attention-deficit disorder (ADHD), a group of peers with diabetes mellitus, and a typical control group of peers who had none of these conditions.

The researchers found that 13% of individuals in the ASD group had a diagnosis of intellectual disability (ID). The prevalence of an ID diagnosis was higher in females than in males and increased with age. More than one third of individuals in the ASD group had at least one co-occurring psychiatric condition, most commonly ADHD, anxiety, or depression. The ASD group was significantly more likely to have a co-occurring psychiatric disorder and a significantly higher rate of suicide or self-injurious behavior than any of the comparison groups. Yet, transitionaged individuals with ASD had lower rates of smoking and drug abuse than the comparison groups.

Medical conditions were more common in the ASD group than in the ADHD and typical control groups. However, individuals with ASD were at similar or lower risk of co-occurring medical conditions than their peers with diabetes mellitus. The most commonly reported medical conditions among the ASD group were infections, obesity, neurologic conditions, allergy and/or immunology conditions, musculoskeletal conditions, and GI conditions.

Because ASD is associated with an increased risk of co-occurring diseases and disorders, the researchers suggest that clinicians’ approach ASD as a chronic health condition that requires consistent health care services and supports. As transition-aged individuals with ASD age into the adult health care system, it is critical that they continue to receive regular follow-ups and routine screenings for co-occurring medical and psychiatric conditions.

Understanding Service Usage and Needs for Adults with ASD: The Importance of Living Situation.
Dudley KM, Klinger MR, Meyer A, Powell P, Klinger LG. J Autism Dev Disord. 2018 Aug 25. [PMID: 30145735]

ASD is associated with increased usage of services. As individuals with ASD and their caregivers age, there will be an increase in the prevalence of adults who will seek ASD-related services. However, little research has been conducted to investigate the service usage and needs of adults with ASD, and how one’s living situation affects service experiences.

The researchers conducting this study administered a survey to 274 caregivers of adults with ASD. Individuals with ASD were diagnosed by clinicians at the University of North Carolina TEACCH Autism Program (TEACCH) between 1969 and 2000. At the time of the current study, individuals with ASD were at least 20 years old. Each caregiver completed the TEACCH Autism in Adulthood Survey, an 87-item questionnaire that assesses ASD-related variables in adults, including factors such as demographics, service usage, current living situation, and developmental level. To assess independence in daily life, the researchers administered the Waisman Activities of Daily Living Scale (W-ADL).

The researchers determined that, within the last two years, more than one-third of caregivers reported that their adult son or daughter with ASD had used employment-related services, and about half reported usage of mental health care services, transportation services, and/or diagnostic services. However, more than half of caregivers also reported that their adult child needed more services than they actually received, typically because services were located too far away or caregivers did not know how or where to access them.

The researchers were particularly interested in the effects of living situation on service use among adults with ASD. In this study, living situations for adults with ASD were described as living independently, living with family, or living in a supported living facility (supervised housing, group home, etc.). More than half of the participants in this study lived at home with a caregiver, however, adults with ASD who lived at home were less likely to receive services and were more likely to have greater unmet needs as well as experience greater barriers to access services. The most commonly reported barriers for caregivers of adults living at home were a lack of knowledge on how to access services and an overall lack of service availability.

As more individuals with ASD enter and progress through adulthood, there is a need to increase service supports for adults with ASD. Given that those who live at home with caregivers tend have more unmet service needs, living situation should be considered when evaluating obstacles to services.

Question 6

Back to Top