projekti 2013-2016 Ikääntyvien autismin kirjon henkilöiden, heidän omaistensa ja läheistensä mielekäs elämä
Katsaus tieteellisiin artikkeleihin ja julkaisuihin Into the Unknown: Aging with Autism Spectrum Disorders Perkins, E.A. & Berkman, K.A. 2012. American Journal on Intellectual and Developmental Disabilities Vol. 117, No 6: 478-496. Vähän tuloksia, paljon tarpeita Diagnosointikriteerien ja -menetelmien kehittäminen Koko elämänkaaren mittaiset seurantatutkimukset Tutkimukset yli 70-vuotiailla kirjon henkilöillä Omia kokemuksia, toiveita ja tarpeita Elämänlaatua (quality of life) käsittelevät tutkimukset Autismin kirjon henkilöiden keskimääräinen elinikä on kasvussa (vrt. koko väestö)
Mukaetova-Ladinska, E.B., Perry, E., Baron, M. & Povey, C. International Journal of Geriatric Psychiatry 27, 2012. The need for new initiatives in research into ageing in ASD is urgent! One of the major challenges is that the majority of the currently older individuals with ASD has not received a formal diagnosis of ASD
Esbensen, A.J., Mailick Seltzer, M., Lam, K.S.L & Bodfish, J.W. Journal of Autism and Developmental Disorders 39, 2009. Rajoittuneen toistuvan käyttäytymisen (restricted repetitive behavior, RRB) väheneminen Autismin kirjon oireiden vaimeneminen ikääntymisen myötä Kuusi eri tutkimusta, joissa yhteensä 712 diagnosoitua autismin kirjon henkilöä ikäjakaumalla 2-62 v. Heistä 80 % miehiä.
Kuvamuistin heikkenemistä 50-85 -vuotiailla lievästi autistisilla henkilöillä (23 kirjon henkilöä, joista 16 Asperger-diagnoosilla) Geurts, H.M. & Vissers, M.E. 2012. Journal of Autism and Developmental Disorders 42. Kirjon piirteiden kompensoitumista (compensatory strategies) Geurts, H.M. & Vissers, M.E. 2012. Journal of Autism and Developmental Disorders 42. Masennusta ja ahdistusta; muutoksia aivojen valkean aineen rakenteessa Happé, F. & Charlton, R.A. 2012. Aging in Autism Spectrum Disorders: A Mini-Review. Gerontology 58: 70-78. Valkean aineen muutokset yleisiä erityyppisissä vaskulaarisissa dementioissa Erkinjuntti et al. 1999. Imaging of static brain lesions in vascular dementia: implications for clinical trials. Alzheimer Disease and Associated Disorders 13 Supplement 3: 81-90.
Bancroft et al. 2012. Autism: the way we are. The National Autistic Society, London National Autistic Society, Englanti, 2012. Laaja kyselytutkimus, johon vastasi 2 938 autismin kirjon henkilöä. Heistä 12.5 % (235 kpl) oli 46-55 -vuotiaita ja 4 % (120 kpl) yli 55-vuotiaita. 46-55 -vuotiaista 59 % ja yli 55-vuotiaista 57 % koki saamansa tuen olleen puutteellista. 62 % kertoi syrjäytymisen olevan vähäisempää, 61 % yleisen terveyden olevan korkeampaa ja 51 % riippuvuuden toisten antamasta tuesta olevan pienempää tuen kasvaessa. Yli 55-vuotiaista vain noin 25 % oli saanut diagnoosin ennen 40 ikävuotta.
Bancroft et al. 2012. Autism: the way we are. The National Autistic Society, London National Autistic Society (NAS), UK, 2012. Vastaajina 5 535 autismin kirjon henkilön läheistä ja omaista miten tukea tarvitsevan kirjon henkilön käy jos hänen läheisensä eivät kykene häntä enää auttamaan 96 % huolestuneita, joista 68 % erittäin huolestuneita. 65 % ei ole tehnyt mitään suunnitelmaa siitä miten toimitaan jos ei kykene enää antamaan tarvittavaa tukea.
Brugha, T., McManus, S., Meltzer, H., Purdon, S., Scott, F., Baron-Cohen, S., Wheelwright, S., Smith, J and Bankart, J. 2009. Development and testing of methods for identifying cases of Autism Spectrum Disorders among adults in the Adult Psychiatric Morbidity Survey 2007. The NHS Information Centre, England. 24 pp. http://www.hscic.gov.uk/pubs/psychiatricmorbidity07 Esbensen, A., Seltzer, M., Lam, K. and Bodfish, J. 2009. Age-related differences in restricted repetitive behaviors in autism spectrum disorders. Journal of Autism and Developmental Disorders 39: 57-66. http://www.ncbi.nlm.nih.gov/pmc/articles/pmc2605515/ Gerber, F., Baud, M.A., Giroud, M. and Galli Carminati, G. 2008. Quality of life of Adults with Pervasive Developmental Disorders and Intellectual Disabilities. Journal of Autism and Developmental Disorders 38: 1654-1665. Geurts, H.M. and Vissers, M.S. 2012. Elderly with Autism: Executive Functions and Memory. Journal of Autism and Developmental Disorders 42: 665-675. http://link.springer.com/article/10.1007%2fs10803-011-1291-0 Happé, F. and Charlton, R.A. 2012. Aging in Autism Spectrum Disorders: A Mini-Review. Gerontology 58: 70-78 http://www.karger.com/article/fulltext/329720 Hurlbutt, K. and Chalmers, L. 2002. Adults with autism speak out: perceptions of their live experiences. Focus on Autism and other Developmental Disabilities 17(2): 103-111. http://www.accessmylibrary.com/article-1g1-87915401/adults-autism-speak-out.html Heijnen-Kohl, S.M and van Alphen, S.P. 2009. Diagnosis of autism spectrum disorders in older adults. Tijdschrift voor psychiatrie 51: 339-343. (kieli Hollanti) http://www.tijdschriftvoorpsychiatrie.nl/assets/articles/articles_2783pdf.pdf James, I.A., Mukaetova-Ladinska, E., Reichelt, F.K., Briel, R. and Scully, A. 2006. Diagnosing Aspergers syndrome in the elderly: a series of case presentations. International Journal of Geriatric Psychiatry 21: 951-960. LeBlanc, L.A., Riley, A.R. and Goldsmith, T.R. 2008. Autism spectrum disorders: A lifespan perspective. In J.L. Matson (Ed.), Autism spectrum disorders: Evidence based assessment and intervention across the lifespan. (pp. 65-81). Elsevier, San Diego, CA. http://www.auburn.edu/~lal0011/autism/leblanc.pdf Mukaetova-Ladinska, E. B., Perry, E., Baron, M. and Povey, C. 2012. Ageing in people with autism spectrum disorder. International Journal of Geriatric Psychiatry 27: 109-118. Naidu, A., James, I., Mukaetova-Ladinska, E. and Briel, R. 2006. Diagnostig of Asperger syndrome in a 66-year-old male presenting with depression. International Psychogeriatrics 18: 171-173. Perkins, E.A. and Berkman, K.A. 2012. Into the Unknown: Aging with Autism Spectrum Disorders. American Journal on Intellectual and Developmental Disabilities 117(6): 478-496 Persson, B. 2000. Brief Report: A Longitudinal Study of Quality of Life and Independence Among Adult Men with Autism. Journal of Autism and Developmental Disorders Vol 30(1): 61-66. Piven, J. and Rabins, P. 2011. Autism Spectrum Disorders in Older Adults: Toward Defining a Research Agenda. Journal of the American Geriatrics Society 59: 2151-2155. Povey, C., Mills, R. and de la Cuesta, G.G. 2011. Autism and ageing: issues for the future. Clinical Practise 2011: 230-232. http://www.gmjournal.co.uk/autism_and_ageing_issues_for_the_future_29865.aspx Rentry, J. and Royers, H. 2006. Quality of life in high-functioning adults with autism spectrum disorder. The predictive value of disability and support characteristics. Sage Publications and The National Autistic Society Vol. 10(5): 511-524. Schroeder, S.R., LeBlanc, J.M. and Mayo L. 1996. Brief report: a life-span perspective on the development of individuals with autism. Journal of Autism and Developmental Disorders 1996 Apr;26(2):251-255. Smith, L.E., Hong, J., Seltzer, M.M., Greenberg, J.S., Almeida, D.A. and Bishop, S.L. 2010. Daily Experiences Among Mothers of Adolescents and Adults with Autism Spectrum Disorders. Journal of Autism and Developmental Disorders 40: 167-178. http://www.ncbi.nlm.nih.gov/pmc/articles/pmc2826850/ Smith, P.A. 2012. Aging and Autism. Perspectives on Gerontology 17:69-75 Torjesen, I. 2013. People with learning disabilities are more likely to die prematurely, inquiry finds. British Medical Journal 2013;346:f1853 Totsika, V., Felce, D., Kerr, M. and 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(10): 1171-1178. Underwood, L., McCarthy, J. and Tsakanikos, E. 2010. Mental health of adults with autism spectrum disorders and intellectual disability. Psychiatry 23: 421-426. http://journals.lww.com/co-psychiatry/toc/2010/09000 van Alpen, S.P., Oude Voshaar, R.C. 2012. Screening of autism spectrum disordesrs on the elderly: a contribution to a psychometric approach. International Psychogeriatrics 24: 1187-1188. van Bourgondien, M.E., Reichle, N.c. and Schopler, E. 2003. Effects of a Model Treatment Approach on Adults with Autism. Journal of Autism and Developmental Disorders Vol 33(2): 131-140. van Niekerk, M.E.H., Groen, W., Vissers, C.T.W.M., van Driel-de Jong, D., Kann, C.C and Oude Voshaar, R.C. 2011. Diagnosing autism spectrum disorders in elderly people. International Psychogeriatrics 23: 700-710. http://www.rescuepost.com/files/diagnosing-autism-spectrum-disorders-in-elderly-people-2010.pdf Wallace, G.L., Dankner, N., Kenworthy, L., Giedd, J.N. and Martin, A. 2010. Age-related temporal and parietal cortical thinning in autism spectrum disorders. Brain 133: 3745-3754. http://brain.oxfordjournals.org/content/133/12/3745.full.pdf+html Wick, J.Y and Zanni, G.R. 2009. Autism and aging: hardly out of the woods. Consultant Pharmacist 24: 648-660. Wright, S.D., Brooks, D.E., D'Astous, V.D. and Grandin, T. 2013. The challenge and promise of Autism Spectrum Disorders in adulthood and aging: A systematic review of the literature (1990-2013). Autism insights 5: 21-73. http://researchautism.net/autism_research_journal_articles_publications_study.ikml?ra=5107&s=1 The Rights of Ageing People with Autism. Autism-Europe Position Paper on Ageing Persons with Autism. http://www.autismsocietycanada.ca/docsandmedia/keyreports/ae_eypd_ageing_final_eng.pdf Research on Aging with Autism Spectrum Disorders: Issues and Progress. http://autismnow.org/articles/research-on-aging-with-autism-spectrum-disorders-issues-and-progress/ Aging with Autism. http://www.aspergersyndrome.org/articles/aging-with-autism.aspx Ageing in people with ASD. http://www.altogetherautism.org.nz/file/documents/2012-documents/ageing.pdf Donovan, J.and Zucker, Z. 2010. Autism's first child. Atlantic Magazine, October 2010. ftp://120.29.7.98/share/home%20documents/new%20folder/course_cd/autism%e2% 80%99s%20First%20Child%20-%20Magazine%20-%20The%20Atlantic.pdf Neal Harrison, A. 2010. Aging with Autism. Has a focus on children left autistic adults underserved? Illumination 2010. Office of Researh, University of Missouri. http://illumination.missouri.edu/s10/autism Gold, N. and Whelan, N. 1992. Elderly people with autism. Defining a social work agenda for research and practise. In: Turner, F.J. (Ed.). Mental health and elderly. A social work perspective. pp. 102-114. The Free Press, New York, USA. Model programme for residential facilities for the elderly with autism. Sofiefonden 2010. http://www.sofiefonden.dk/model_program_in_english Towards a better quality of life. The rights of ageing people with autism. Autism-Europe a.i.s.b.l., Brussels http://www.autismeurope.org/files/files/2012-european-parliament-event/ageing-report-en-sml.pdf Who cares? Supporting adults with autism as they get older. The National Autistic Society, London. 2012. WELSH GOVERNMENT REPORTS http://wales.gov.uk/topics/health/publications/socialcare/reports/?view=search+results&lang=en 1. The Autistic Spectrum Disorders (ASD): Strategic Action Plan for Wales 2. The Circumstances and Support Needs of Older People with Autism 3. Adults with Autism Conference Report 41 tieteellistä artikkelia/ julkaisua
Tarkennus diaan 4 (näytetään tarvittaessa) Kuvamuistin heikkenemistä 50-85 -vuotiailla lievästi autistisilla henkilöillä (23 kirjon henkilöä, joista 16 Asperger-diagnoosilla). Geurts, H.M. & Vissers, M.E. 2012. Journal of Autism and Developmental Disorders 42. Koehenkilöille näytettiin geometrisiä kuvioita 10 sekunnin ajan (per kuva). Henkilöiden piti jäljentää kuvat heti niiden näyttämisen jälkeen sekä 20 min kuluttua kuvien näkemisestä.