Into the unknown: Aging with autism spectrum disorders

American Journal on Intellectual and Developmental Disabilities

Volumn 117, Issue 6, 2012, Pages 478-496

  Perkins, Elizabeth A ^a   Berkman, Karen A ^a  

^a UNIVERSITY OF SOUTH FLORIDA   (United States)

Author keywords

Age related changes; Autism; Health; Older adults; Quality of life

Indexed keywords

ADAPTIVE BEHAVIOR; ADULT; AGED; AGING; AUTISM; CHILD; COMORBIDITY; DEMOGRAPHY; FEMALE; HEALTH STATUS; HUMAN; LIFE EXPECTANCY; MALE; META ANALYSIS; MIDDLE AGED; MORTALITY; OCCUPATION; PSYCHOLOGICAL ASPECT; REVIEW; SELF CONCEPT; SOCIAL BEHAVIOR;

ADAPTATION, PSYCHOLOGICAL; ADULT; AGED; AGING; CHILD; CHILD DEVELOPMENT DISORDERS, PERVASIVE; COMORBIDITY; FEMALE; HEALTH STATUS; HUMANS; LIFE EXPECTANCY; MALE; MIDDLE AGED; OCCUPATIONS; RESIDENCE CHARACTERISTICS; SELF CONCEPT; SOCIAL BEHAVIOR;

EID: 84870553124     PISSN: 19447515     EISSN: 19447558     Source Type: Journal    
DOI: 10.1352/1944-7558-117.6.478     Document Type: Article

References (84)

1. American Psychiatric Association. (1994). Diagnostic and statistical manual of mental disorders (4th ed.). Washington, DC: Author.
2. American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed., text rev.). Washington, DC: Author.
3. American Psychiatric Association. (2011). DSM-5 development, autism spectrum disorder. Available at http://www.dsm5.org/ProposedRevision/Pages/ proposedrevision. aspx?rid=94#
4. Annegers, J. F., & Coan, S. P. (1999). SUDEP: Overview of definitions and review of incidence data. Seizure, 8, 347-353.
5. Antshel, K. M., Aneja, A., Strunge, L., Peebles, J., Fremont, W. P., Stallone, K., ⋯ Kates, W. (2007). Autistic spectrum disorders in velocardio facial syndrome (22q11.2 deletion). Journal of Autism and Developmental Disorders, 37, 1776-1786. (Pubitemid 47476599)
6. Arehart-Treichel, J. (2008). Adults with autism often undiagnosed, untreated. Psychiatric News, 43, 27.
7. Baker, P., Piven, J., & Sato, Y. (1998). Autism and tuberous sclerosis complex: Prevalence and clinical features. Journal of Autism and Developmental Disorders, 28, 279-285. (Pubitemid 28368955)
8. Baron-Cohen, S., Wheelwright, S., Skinner, R., Martin, J., & Clubley, E. (2001). The autism-spectrum quotient (AQ): Evidence from Asperger syndrome/high functioning autism, males and females, scientists and mathematicians. Journal of Autism and Developmental Disorders, 31, 5-17.
9. Bittles, A. H., Petterson, B. A., Sullivan, S. G., Hussain, R., Glasson, E. J., & Montgomery, P. D. (2002). The influence of intellectual disability on life expectancy. Journal of Gerontology Series A: Biological Sciences and Medical Sciences, 57, M470-M472. (Pubitemid 34733816)
10. Bolton, J. M., Metge, C., Lix, L., Prior, H., Sareen, J., & Leslie, W. D. (2008). Fracture risk from psychotropic medications: A populationbased study. Journal of Clinical Psychopharmacology, 4, 384-391.
11. Boluk, A., Guzelipek, M., Savli, H., Temple, I., Isin Ozisik, H., & Kaygusuz, A. (2004). The effect of valproate on bone mineral density in adult epileptic patients. Pharmacological Research, 50, 93-97. (Pubitemid 38479673)
12. Bovee, J. P. (2000). A right to our own life, our own way. Focus on Autism and Other Developmental Disabilities, 15, 250-252.
13. Brugha, T. S., McManus, S., Bankart, J., Scott, F., Purdon, S., Smith, J., ⋯ Meltzer, H. (2011). Epidemiology of autism spectrum disorders in adults in the community in England. Archives of General Psychiatry, 68, 459-465. doi:10.1001/archgenpsychiatry.2011.38
14. Cambridge, B., & Cina, S. J. (2010). The accuracy of death certificate completion in a suburban community. American Journal of Forensic Medicine and Pathology, 31, 232-235. doi:10. 1097/PAF.0b013e3181e5e0e2
15. Canitano, R., Luchetti, A., & Zappella, M. (2005). Epilepsy, electroencephalographic abnormalities, and regression in children with autism. Journal of Child Neurology, 20, 27-31. (Pubitemid 40394264)
16. Centers for Disease Control and Prevention. (2009). Prevalence of autism spectrum disorders-Autism and Developmental Disabilities Monitoring Network, United States, 2006 [Surveillance summaries]. Morbidity and Mortality Weekly Report, 58(No. SS-10), 1-20.
17. Centers for Disease Control and Prevention. (2010a). What we've learned about autism spectrum disorder. Available at http://www.cdc.gov/Features/ CountingAutism/
18. Centers for Disease Control and Prevention. (2010b). Healthy places terminology. Available at http://www.cdc.gov/healthyplaces/terminology.htm
19. Cooper, S. A. (1997). Learning disabilities and old age. Advances in Psychiatric Treatment, 3, 312-320.
20. Danielsson, S., Gillberg, I. C., Billstedt, E., & Olsson, I. (2005). Epilepsy in young adults with autism: A prospective population-based follow-up study of 120 individuals diagnosed in childhood. Epilepsia, 46, 918-923. (Pubitemid 40847358)
21. Dö len, G., & Bear, M. F. (2009). Fragile X syndrome and autism: From disease model to therapeutic targets. Journal of Neurodevelopmental Disorders, 1, 133-140.
22. Doll, E. A. (1953). Vineland social maturity scale. American Journal of Orthopsychiatry, 5, 80-188.
23. Donvan, J., & Zucker, C. (2010). Autism's first child. The Atlantic. Available at http://www.theatlantic.com/magazine/archive/2010/10/autism-8217-s- first-child/8227/3/
24. Esbensen, A. (2010). Health conditions associated with aging and end of life of adults with Down syndrome. International Review of Research in Mental Retardation, 39, 107-126.
25. Esbensen, A. J., Seltzer, M. M., Lam, K. S. L., & Bodfish, J. W. (2009). Age-related differences in restricted repetitive behaviors in autism spectrum disorders. Journal of Autism and Developmental Disorders, 39, 57-66.
26. Farley, M. A., McMahon, W. M., Fombonne, E., Jenson, W. R., Miller, J., Gardner, M., ⋯ Coon, H. (2009). Twenty-year outcome for individuals with autism and average or nearaverage cognitive abilities. Autism Research, 2, 109-118.
27. Ficker, D. M., So, E. L., Chen, W. K., Annegers, J. F., O'Brian, P. C., Cascines, G. D., & Belau, P. G. (1998). Population-based study of the incidence of sudden unexplained death in epilepsy. Neuorology, 51, 1270-1274. (Pubitemid 28520542)
28. Fischer, K. W., & Ayoub, C. (1994). Affective splitting and dissociation in normal and maltreated children: Developmental pathways for self in relationships. In D. Cicchetti & S. L. Toth (Eds.), Disorders and dysfunctions of the self. Rochester, NY: Rochester University Press.
29. Ganz, M. L. (2007). The lifetime distribution of the incremental societal cost of autism. Archives of Pediatric and Adolescent Medicine, 161, 343-349. (Pubitemid 46556364)
30. Ghaziuddin, M., Tsai, L., & Ghaziuddin, N. (1992). Autism in Down's syndrome: Presentation and diagnosis. Journal of Intellectual Disability Research, 36, 449-456.
31. Ghaziuddin, M., & Zafar, S. (2008). Psychiatric comorbidity of adults with autism spectrum disorders. Clinical Neuropsychiatry, 5, 9-12.
32. Gillberg, C., & Billstedt, E. (2000). Autism and Asperger syndrome: Coexistence with other clinical disorders. Acta Psychiatrica Scandinavica, 102, 321-330.
33. Gillberg, C., Billstedt, E., Sundh, V., & Gillberg, I. C. (2010). Mortality in autism: A prospective longitudinal community-based study. Journal of Autism and Developmental Disorders, 40, 352-357.
34. Grandin, T., & Scariano, M. M. (1996). Emergence: Labeled autistic. New York, NY: Warner Books.
35. Gurney, J. G., McPheeters, M. L., & Davis, M. W. (2006). Parental report of health conditions and health care use among children with or without autism. Archives of Pediatric and Adolescent Medicine, 160, 825-830. (Pubitemid 44199242)
36. Heijnen-Kohl, S. M., & van Alphen, S. P. (2009). [Diagnosis of autism spectrum disorders in older adults]. Tijdschrift voor Psychiatrie, 51, 339-343.
37. Holmes, N., Shah, A., & Wing, L. (1982). The disability assessment schedule: A brief screening device for use with the mentally retarded. Psychological Medicine, 12, 879-890. (Pubitemid 13174855)
38. Horvath, K., & Perlman, J. A. (2002). Autistic disorder and gastrointestinal disease. Current Opinion in Pediatrics, 14, 583-587.
39. Howlin, P., Goode, S., Hutton, J., & Rutter, M. (2004). Adult outcome for children with autism. Journal of Child Psychology and Psychiatry, 45, 212-219.
40. James, I. A., Mukaetova-Ladinska, E., Reichelt, F. K., Briel, R. & Scully, A. (2006). Diagnosing Apergers syndrome in the elderly: A series of case presentations. International Journal of Geriatric Psychiatry, 21, 951-960. (Pubitemid 44596389)
41. Kahn, H. A., & Sempos, C. T. (1989). Statistical methods in epidemiology. Oxford, England: Oxford University Press.
42. Kanner, L. (1943). Autistic disturbances of affective contact. Nervous Child, 2, 217-250.
43. Kanner, L. (1973). Childhood psychosis: Initial studies and new insights. Washington, DC: V. H. Winston.
44. Kern, J. K., Miller, V. S., Cauller, P. L., Kendall, P. R., Mehta, P. J., & Dodd, M. (2001). Effectiveness of N, N-dimethylglycine in autism and pervasive developmental disorder. Journal of Child Neurology, 16, 169-173. (Pubitemid 32433235)
45. Kern, J. K., Trivedi, M. H., Garver, C. R., Grannemann, B. D., Andrews, A. A., Savla, J. S., ⋯ Schroeder, J. L. (2006). The pattern of sensory processing abnormalities in autism. Autism, 10, 480-494. (Pubitemid 44263921)
46. Krakowiak, P., Goodlin-Jones, B., Hertz-Picciotto, I., Croen, L. A., & Hansen, R. L. (2008). Sleep problems in children with autism spectrum disorders, developmental delays, and typical development: A population based study. Journal of Sleep Research, 17, 197-206. (Pubitemid 351678606)
47. Le Couteur, A., Rutter, M., Lord, C., Rios, P., Robertson, S., Hografer, M., & McClennan, M. (1989). Autism Diagnostic Interview: A standardized, investigator based instrument. Journal of Autism and Developmental Disorders, 19, 363-387. (Pubitemid 19233509)
48. Long, T., & Kavarian, S. (2008). Aging with developmental disabilities: an overview. Topics in Geriatric Rehabilitation, 24, 2-11. (Pubitemid 351252980)
49. Lord, C., Risi, S., Lambrecht, L., Cook, E. H., Leventhal, B. L., Di Lavore, P. C., ⋯ Rutter, M. (2000). The Autism Diagnostic Observation Schedule-Generic: A standard measure of social and communication deficits associated with the spectrum of autism. Journal of Autism and Developmental Disorders, 30, 205-223.
50. Lord, C., Rutter, M., & Le Couteur, A. (1994). Autism diagnostic interview-Revised: A revised version of a diagnostic interview for caregivers of individuals with pervasive developmental disorder. Journal of Autism and Developmental Disorders, 24, 659-685. (Pubitemid 24309810)
51. Matson, J. L., Rivet, T. T., Fodstad, J. C., Dempsey, T., & Boisjoli, J. A. (2009). Examination of adaptive behavior differences in adults with autism spectrum disorders and intellectual disability. Research in Developmental Disabilities, 30, 1317-1325.
52. Molloy, C. A., & Manning-Courtney, P. (2003). Prevalence of chronic gastrointestinal symptoms in children with autism and autism spectrum disorders. Autism, 7, 165-171. (Pubitemid 36748447)
53. Mouridsen, S. E., Brønnum-Hansen, H., Rich, B., & Isager, T. (2008). Mortality and causes of death in autism spectrum disorders: An update. Autism, 12, 403-414. (Pubitemid 351911188)
54. National Center for Health Statistics & Centers for Disease Control and Prevention. (1995). The International classification of diseases, ninth revision, clinical modification (ICD-9-CM) (4th ed.). New York, NY: McGraw-Hill.
55. O'Neill, M., & Jones, R. S. (1997). Sensoryperceptual abnormalities in autism: A case for more research? Journal of Autism and Developmental Disorders, 33, 631-642.
56. Orsmond, G. I., Krauss, M. W., & Seltzer, M. M. (2004). Peer relationships and social and recreational activities among adolescents and adults with autism. Journal of Autism and Developmental Disorders, 34, 245-256. (Pubitemid 38860206)
57. Perkins, E. A. (2010, July). Temple Grandin-A true pioneer. Golden Years, Newsletter of the Gerontology Division of the American Association on Intellectual and Developmental Disabilities. Available at http://www.aaidd.org/ media/PDFs/AAAIDD GerontologyNewsletterJuly2010final.pdf
58. Perkins, E. A., & Moran, J. A. (2010). Aging adults with intellectual disabilities. Journal of the American Medical Association, 304(1), 91-92.
59. Pickett, J., Xiu, E., Tuchman, R., Dawson, G., & Lajonchere, C. (2011). Mortality in individuals with autism, with and without epilepsy. Journal of Child Neurology, 26, 932-939. doi:10.1177/0883073811402203
60. Renty, J. O., & Roeyers, H. (2006). Quality of life in high-functioning adults with autism spectrum disorder: The predictive value of disability and support characteristics. Autism, 10, 511-524. (Pubitemid 44263923)
61. Rosenblum, G., & Lewis, M. (2006). Emotional development in adolescence. In G. R. Adams & M. D. Berzonsky (Eds.), Blackwell handbook of adolescence (pp. 269-289). Malden, MA: Blackwell.
62. Rowe, J. W., & Kahn, R. L. (1987). Human aging: Usual and successful. Science, 237, 143-149. (Pubitemid 17095916)
63. Rowe, J. W., & Kahn, R. L. (1997). Successful aging. The Gerontologist, 37, 433-440. (Pubitemid 27353643)
64. Rowe, J. W., & Kahn, R. L. (1998). Successful aging. New York, NY: Pantheon/Random House.
65. Saxon, S. V., Etten, M. J., & Perkins, E. A. (2010). Physical change and aging: A guide for the helping professions (5th ed.). New York, NY: Springer.
66. Seltzer, M. M., Kraus, M. W., Shattuck, P., Orsmond, G., Swe, A., Lord, C. (2003). The symptoms of autism spectrum disorders in adolescence and adulthood. Journal of Autism and Developmental Disorders, 33, 565-581. (Pubitemid 38036315)
67. Seltzer, M. M., Shattuck, P., Abbeduto, L., & Greenberg, J. S. (2004). Trajectory of development in adolescents and adults with autism. Mental Retardation and Developmental Disabilities Research Reviews, 10, 234-247. (Pubitemid 40209457)
68. Shattuck, P. T., Seltzer, M. M., Greenberg, J. S., Orsmond, G. I., Bolt, D., Kring, S., ⋯ Lord, C. (2007). Change in autism symptoms and maladaptive behaviors in adolescents and adults with an autism spectrum disorder. Journal of Autism and Developmental Disorders, 37, 1735-1747. (Pubitemid 47476598)
69. Shavelle, R. M., & Strauss, D. J. (1998). Comparative mortality of persons with autism in California, 1980-1996. Journal of Insurance Medicine, 30, 220-225.
70. Shavelle, R. M., Strauss, D. J., & Pickett, J. (2001). Causes of death in autism. Journal of Autism and Developmental Disorders, 31, 569-576. (Pubitemid 37490153)
71. Shin, M., Besser, L. M., Kucik, J. E., Lu, C., Siffel, C., & Correa, A. (2009). Prevalence of Down syndrome among children and adolescents in 10 regions of the United States. Pediatrics, 124, 1565-1571. doi:10.1542/peds.2009- 0745
72. Simonoff, E., Pickles, A., Charman, T., Chandler, S., Loucas, T., & Baird, G. (2008). Psychiatric disorders in children with autism spectrum disorders: Prevalence, comorbidity, and associated factors in a population-derived sample. Journal of the American Academy of Child and Adolescent Psychiatry, 47, 921-929.
73. Skokauskas, N., & Gallagher, L. (2010). Psychosis, affective disorders, and anxiety and autism spectrum disorder: Prevalence and nosological considerations. Psychopathology, 43, 8-16.
74. Smith, C., Tomassini, C., Smallwood, S., & Hawkins, M. (2005). The changing age structure of the UK population. London, England: Her Majesty's Stationery Office [HMSO].
75. Spence, S. J., & Schneider, M. T. (2009). The role of epilepsy and epileptiform EEG's in autism spectrum disorders. Pediatric Research, 65, 599-606.
76. Stuart-Hamilton, I., & Morgan, H. (2011). What happens to people with ASD in middle age and beyond? Report of a preliminary on-line study. Advances in Mental Health and Intellectual Disabilities, 5, 22-28.
77. Totsika, V., Felce, D., Kerr, M., & Hastings, R. P. (2010). Behavior problems, psychiatric symptoms, and quality of life for older adults with intellectual disability with and without autism. Journal of Autism and Developmental Disorders, 40, 1171-1178.
78. Valicenti-McDermott, M., McVicar, K., Rapin, I., Wershil, B. K., Cohen, H., & Shinnar, S. (2006). Frequency of gastrointestinal symptoms in children with autistic spectrum disorders and association with family history of autoimmune disease. Journal of Developmental and Behavioral Pediatrics, 27, S128-S136. (Pubitemid 44620294)
79. Veltman, M. W., Craig, E. E., & Bolton, P. F. (2005). Autism spectrum disorders in Prader-Willi and Angelman syndromes: A systematic review. Psychiatric Genetics, 15, 243-254. (Pubitemid 44491462)
80. Wallis, C. (2010, February). Temple Grandin on Temple Grandin. Time. Available at http://www.time.com/time/arts/article/0, 8599, 196 0347, 00. html xzz1UABU73iR
81. Watling, R. I., Deitz, J., & White, O. (2001). Comparison of sensory profile scores of young children with and without autism spectrum disorders. American Journal of Occupational Therapy, 55, 416-423. (Pubitemid 33602573)
82. Wulffaert, J., van Berckelaer-Onnes, I. A., & Scholte, E. M. (2009). Autistic disorder symptoms in Rett syndrome. Autism, 13, 567-581.
83. Yeargin-Allsopp, M., van Naarden Braun, K., Doernberg, N. S., Benedict, R. E., Kirby, R. S., & Durkin, M. S. (2008). Prevalence of cerebral palsy in 8-year-old children in three areas of the United States in 2002: A multisite collaboration. Pediatrics, 121, 547-554.
84. Zaffuto-Sforza, C. D. (2005). Aging with cerebral palsy. Physical Medicine and Rehabilitation Clinics of North America, 16, 235-249. (Pubitemid 39550553)