Interagency Autism Coordinating Committee Strategic Plan for Autism Spectrum Disorder Research – 2012 UpdateSkip Over Navigation Links
- Question 1: When Should I Be Concerned?
- Question 2: How Can I Understand What Is Happening?
- Question 3: What Caused This to Happen and Can It Be Prevented?
- Question 4: Which Treatments and Interventions Will Help?
- Question 5: Where Can I Turn for Services?
- Question 6: What Does the Future Hold, Particularly for Adults?
- Question 7: What Other Infrastructure and Surveillance Needs Must Be Met?
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- Strategic Plan Update External Planning Group Members
- Office of Autism Research Coordination (OARC) Staff List
Question 6: What Does the Future Hold, Particularly for Adults?
What Is New in This Area, and What Have We Learned in the Past Two Years?
The needs of adults with ASD continue to be understudied. Over the last two years, relatively few peer-reviewed published studies have examined the needs of adults with ASD or service interventions to improve their functioning and quality of life. Few presented experimental or quasi-experimental evidence, a conclusion supported by the United Kingdom's (U.K.) National Institute for Health and Clinical Excellence (NICE) guidelines for the diagnosis, referral, and treatment of adults with ASD (National Collaborating Centre for Mental Health, 2011 ; Pilling et al., 2012). Because the NICE guidelines were unable to identify high-quality evidence, many of the adult autism guidelines in the U.K. are based on the guideline developer group's experience.
Diagnosis of ASD in Adults
Several studies have validated strategies to diagnose adults with ASD (Andersen et al., 2011; Bastiaansen et al., 2011; Joshi et al., 2011; Ritvo et al., 2011). However, only one diagnostic instrument was tested in an unselected community sample, which represents a truer test of the instrument's validity (Brugha et al., 2012). This instrument performed only moderately well in the community sample, suggesting the need for more research to identify the best direct observation measures for diagnosis.
Epidemiology of ASD in Adults
Recent research has shown that the prevalence of ASD in the adult population is much higher than previously believed. A new study of adults 16 years and older living in the community in England, using rigorous survey methodology, found the prevalence of ASD in adults to be 0.98%, with no differences by respondent age. This is similar to the prevalence in children, suggesting that a large portion of the observed increase in prevalence in the U.K. observed over the last two decades may be due to improved detection (Brugha et al., 2011). This study also found that adults with ASD were much more likely to be receiving public assistance and have a lower income than their unaffected peers. Interestingly, in the U.S. a similar prevalence of ASD was found among university students (White, Ollendick & Bray, 2011). Finally, new research indicates that in the U.S. as many as 10% of patients in residential psychiatric facilities may have undiagnosed ASD (Mandell et al., 2012).
Quality of Life/Functional Outcomes
Free time among adolescents with ASD is frequently spent alone or with their mothers (Orsmond & Kuo, 2011). Furthermore, several new findings suggest that functional skills and quality of life for those with ASD plateau or even diminish during adulthood. For example, research in the U.S. showed that daily living skills improved during adolescence and into the early 20s but remained static during the late 20s (Smith, Maenner & Seltzer 2012). This plateau may be caused by adolescents leaving the more supportive high school environment, a notion supported by the recent finding of very low rates of employment and educational activities in young adults immediately following high school (Taylor & Seltzer, 2011; Shattuck et al., 2012). In fact, more than 50% of youth with ASD who had left high school in the past two years had no participation in employment or education, a greater percentage than that of any other disability group (Shattuck et al., 2012). A study in Taiwan showed that while self-care and adaptive behaviors indicated the potential for a high level of independence among a sample of Taiwanese adults with ASD, only 14% were employed, and most of these worked only part-time (Lin, Yu & Yu, 2012).
Approaches to improve outcomes for young adults with ASD have had mixed results. For example, there is evidence that sheltered workshops—commonly used as an approach to increase the probability of employment among adults with ASD—do not, in fact, increase the probability of employment, despite being considerably more expensive than other vocational strategies (Cimera et al., 2012). However, social skills intervention has resulted in improvements across a variety of domains for young adults with ASD. Notably, in a randomized controlled trial studying the effectiveness of an evidence-based, caregiver-assisted social skills intervention, young adults with ASD reported decreased loneliness and improved social skills knowledge, while caregivers reported improvements in young adults' empathy, social skills, and frequency of participation in group social interactions (Gantman et al., 2012).
Based on data from a nationally representative survey in the U.S., it has been shown that 60% of young adults on the autism spectrum ages 19–23 continue to use mental health and medical services and to receive speech and occupational therapies past high school (Shattuck et al., 2011). Rates of service disengagement are very high after students leave high school; African American adolescents with ASD were more than three times as likely as white adolescents to completely disengage from service use, and adolescents in families with incomes less than $25,000/year were almost six times more likely to completely disengage from service use compared with families with incomes greater than $75,000/year. This highlights the critical importance of Medicaid entitlements, as privately insured adolescents with ASD were more than twice as likely as adolescents with public healthcare insurance to disengage from service use (Shattuck et al., 2011).
What Gaps Have Emerged in the Past Two Years?
Young Adult Interventions
New gaps may not have emerged in the last two years as much as they were systematically quantified and highlighted. A systematic review of vocational interventions for adolescents and young adults with ASD, who ranged from 13 to 30 years old, found only five studies, all of poor quality and relatively narrowly focused, indicating the urgent need for rigorous development and testing of these types of interventions (Taylor et al., 2012). A review of social skills interventions for people on the autism spectrum found only two rigorous studies that included young adults, with both studies including only individuals with average or above average intelligence (Reichow, Steiner & Volkmar, 2012). Again, this review points to the critical lack of tested interventions for adolescents and young adults either to address the core symptoms of ASD (social impairments, communication, and repetitive behaviors) or to improve adaptive behaviors that increase the potential for independence. These reviews emphasize the importance of continuing research efforts to develop and test interventions that address the needs of individuals with ASD across the spectrum.
ASD and the Criminal Justice System
A review of the intersection of ASD and the criminal justice system also highlights a gap in knowledge of the extent to which individuals with ASD exhibit criminal behavior and may enter the criminal justice system (Lerner et al., 2012). The review points out that while most studies find no link between ASD and criminal behavior, some individuals with ASD do end up in the criminal justice system and may require special treatment. In addition, no research has been conducted on the extent to which individuals with ASD are victims of crimes.
Service Delivery and Outcomes for Adults
Two published reviews also highlight the lack of understanding of what happens to individuals with ASD as they become older adults (Piven & Rabins, 2011; Happé & Charlton, 2012). In this vein, additional research is needed to identify direct observation measures that can be used in adult diagnosis and to validate diagnostic instruments for adults.
Finally, new findings about disparities in service delivery to and outcomes for adults with ASD point to the urgent need for research to understand the reasons for these disparities and to ameliorate them.
Andersen LM, Näswall K, Manouilenko I, Nylander L, Edgar J, Ritvo RA, Ritvo E, Bejerot S. The Swedish version of the Ritvo autism and Asperger diagnostic scale: revised (RAADS-R). A validation study of a rating scale for adults. J Autism Dev Disord. 2011 Dec;41(12):1635-45. [PMID: 21327833]
Bastiaansen JA, Meffert H, Hein S, Huizinga P, Ketelaars C, Pijnenborg M, Bartels A, Minderaa R, Keysers C, de Bildt A. Diagnosing autism spectrum disorders in adults: the use of Autism Diagnostic Observation Schedule (ADOS) module 4. J Autism Dev Disord. 2011 Sep;41(9):1256-66. [PMID: 21153873]
Brugha TS, McManus S, Bankart J, Scott F, Purdon S, Smith J, Bettington P, Jenkins R, Meltzer H. Epidemiology of autism spectrum disorders in adults in the community in England. Arch Gen Psychiatry. 2011 May;68(5):459-65. [PMID: 21536975]
Brugha TS, McManus S, Smith J, Scott FJ, Meltzer H, Purdon S, Berney T, Tantam D, Robinson J, Radley J, Bankart J. Validating two survey methods for identifying cases of autism spectrum disorder among adults in the community. Psychol Med. 2012 Mar;42(3):647-56. [PMID: 21798110]
Cimera RE, Wehman P, West M, Burgess S. Do sheltered workshops enhance employment outcomes for adults with autism spectrum disorder? Autism. 2012 Jan;16(1):87-94. [PMID: 21610189]
Gantman A, Kapp SK, Orenski K, Laugeson EA. Social skills training for young adults with high-functioning autism spectrum disorders: a randomized controlled pilot study. J Autism Dev Disord. 2012 Jun;42(6):1094-103. [PMID: 21915740]
Happé F, Charlton RA. Aging in autism spectrum disorders: a mini-review. Gerontology. 2012;58(1):70-8. [PMID: 21865667]
Joshi G, Petty CR, Fried R, Wozniak J, Micco JA, Henin A, Doyle R, Galdo M, Kotarski M, Caruso J, Meller B, Faraone SV, Biederman J. Discriminant and concurrent validity of a simplified DSM-based structured diagnostic instrument for the assessment of autism spectrum disorders in youth and young adults. BMC Psychiatry. 2011 Dec 30;11:204. [PMID: 22208391]
Lerner MD, Haque OS, Northrup EC, Lawer L, Bursztajn HJ. Emerging perspectives on adolescents and young adults with high-functioning autism spectrum disorders, violence, and criminal law. J Am Acad Psychiatry Law. 2012;40(2):177-90. [PMID: 22635288]
Lin LY, Yu SN, Yu YT. A study of activities of daily living and employment in adults with autism spectrum disorders in Taiwan. Int J Rehabil Res. 2012 Jun;35(2):109-15. [PMID: 22334003]
Mandell DS, Lawer LJ, Branch K, Brodkin ES, Healey K, Witalec R, Johnson DN, Gur RE. Prevalence and correlates of autism in a state psychiatric hospital. Autism. 2012 Nov;16(6):557-67. [PMID: 21846667]
National Collaborating Centre for Mental Health Commissioned by the National Institute for Health and Clinical Excellene. Autism: Recognition, referral, diagnosis and management of adults on the autism spectrum--Draft 2011. (PDF – 3 MB)
Orsmond GI, Kuo HY. The daily lives of adolescents with an autism spectrum disorder: discretionary time use and activity partners. Autism. 2011 Sep;15(5):579-99. [PMID: 21697194]
Pilling S, Baron-Cohen S, Megnin-Viggars O, Lee R, Taylor C; Guideline Development Group. Recognition, referral, diagnosis, and management of adults with autism: summary of NICE guidance. BMJ. 2012 Jun 27;344:e4082. [PMID: 22740567]
Piven J, Rabins P; Autism-in-Older Adults Working Group. Autism spectrum disorders in older adults: toward defining a research agenda. J Am Geriatr Soc. 2011 Nov;59(11):2151-5. [PMID: 22091837]
Reichow B, Steiner AM, Volkmar F. Social skills groups for people aged 6 to 21 with autism spectrum disorders (ASD). Cochrane Database Syst Rev. 2012 Jul 11;7:CD008511. [PMID: 22786515]
Ritvo RA, Ritvo ER, Guthrie D, Ritvo MJ, Hufnagel DH, McMahon W, Tonge B, Mataix-Cols D, Jassi A, Attwood T, Eloff J. The Ritvo Autism Asperger Diagnostic Scale-Revised (RAADS-R): a scale to assist the diagnosis of Autism Spectrum Disorder in adults: an international validation study. J Autism Dev Disord. 2011 Aug;41(8):1076-89. [PMID: 21086033]
Shattuck PT, Narendorf SC, Cooper B, Sterzing PR, Wagner M, Taylor JL. Postsecondary education and employment among youth with an autism spectrum disorder. Pediatrics. 2012 Jun;129(6):1042-9. [PMID: 22585766]
Shattuck PT, Wagner M, Narendorf S, Sterzing P, Hensley M. Post-high school service use among young adults with an autism spectrum disorder. Arch Pediatr Adolesc Med. 2011 Feb;165(2):141-6. [PMID: 21300654]
Smith LE, Maenner MJ, Seltzer MM. Developmental trajectories in adolescents and adults with autism: the case of daily living skills. J Am Acad Child Adolesc Psychiatry. 2012 Jun;51(6):622-31. [PMID: 22632621]
Taylor JL, McPheeters ML, Sathe NA, Dove D, Veenstra-Vanderweele J, Warren Z. A systematic review of vocational interventions for young adults with autism spectrum disorders. Pediatrics. 2012 Sep;130(3):531-8. [PMID: 22926170]
Taylor JL, Seltzer MM. Employment and post-secondary educational activities for young adults with autism spectrum disorders during the transition to adulthood. J Autism Dev Disord. 2011 May;41(5):566-74. [PMID: 20640591]
White SW, Ollendick TH, Bray BC. College students on the autism spectrum: prevalence and associated problems. Autism. 2011 Nov;15(6):683-701. [PMID: 21610191]
All material appearing in this report is in the public domain and may be reproduced or copied. A suggested citation follows.
Interagency Autism Coordinating Committee (IACC). IACC Strategic Plan for Autism Spectrum Disorder (ASD) Research —2012 Update. December 2012. Retrieved from the U.S. Department of Health and Human Services Interagency Autism Coordinating Committee website: http://iacc.hhs.gov/strategic-plan/2012/index.shtml.