KIRTON, JENNIFER

Ryan, Tony

Tod, Angela

TitleWhat do older autistic adults feel are the most important factors that have assisted them in maintaining their own physical and mental well-being?Abstract Rationale There is only a handful of studies that presents findings from research with older autistic adults, as much of the current research is focussed on children and and proxy accounts. Moreover, as autism is a relatively new diagnostic category it is only in recent years that the number of older adults with a diagnosis has increased. Indeed recommendations have been made to ensure that there is further research into adults with ASC.It is estimated by the National Autistic Society that approximately 1% (600,000) of children and adults in the UK population have ASC. If we follow this through and recognize that autism is a lifelong disability, it means that approximately 1% of the older adult population (aged 65+) will also have ASC. Using current population estimates from the Office of National Statistics approximately 14,400 over 65s have ASC and this is set to rise to 35,000 by 2035.BackgroundThis research is a grounded theory study using in-depth qualitative interviews to explore the life experiences of older autistic adults. The life experiences of older autistic adults are a rich source of valuable information that provide insight into autism across the lifespan and how autistic individuals adapt to older age.Specifically this project explored the perspectives of these older adults on how autism has had an impact on their lives and how they have coped/adapted to situations, what they feel has helped them, what they feel has disadvantaged them and how they feel they have changed over time.MethodsTen older autistic adults (aged 50+) took part in the research. An initial in depth unstructured interview was conducted with each person. .Thematic analysis was then conducted on the transcript and then a second interview was conducted to discuss themes identified and to ensure clarity of researcher understanding and gain further information on points of particular interest. Main points  Insights have been shared in regards to health, wellbeing (both physical and mental), education, access to services, social groups, diagnosis, special interests, home administration and daily living amongst others. Thoughts were also shared on growing older and what would be suitable support in older age.Conclusion: It is clear that we have much to learn about autism from the individuals that have a lifetime worth of experience living as autistic.(N.B. data collection for this project is ongoing but will be completed by august 2018)Author Jennifer A Kirton, T Ryan, A Todd<br/

Edge Hill University Research Information Repository

 Lif  i h A i  t te w u sm  RQ  Wh t d  ld  ti ti  d lt  ( d 50+) f l  th  t i t t f t  th t h  i t d th  i  i t i i  th i   h i l & t l ll b i ? : a o o er au s c a u s age ee are e mos mpor an ac ors a ave ass s e em n ma n a n ng e r own p ys ca men a we - e ngJennifer A  Kirton 1 & 2, Dr  Tony Ryan 2 & Prof  Angela Tod 2 . . .B ki  N  Child  i h A i  b  Ad l  i h A i  & h  Eld l  Autism Research rea ng ews: ren w t ut sm ecome u ts w t ut sm t en er y  Adults with Autism! “ d   A i  h f   hild  'A ti  i   Lif  l  d l t l di bilit ' 3 an yet current ut sm researc ocuses on c renu sm s a e ong eve opmen a sa y...and neglects adults and older adults ” 4 . Research in Autism tends to focus on proxy accounts from professionals  parents and carers  5, .    Autistic individuals without an associated learning disability are able to Current research in Autism focuses on children and give insightful accounts of living with Autism. 3 neglects adults and older adults. A search of PubMed for  Autism studies that had been published between 1946- Autistic individuals are the experts on Autism 7 2011 by age of participants gave the results shown. 8  .      Participation of Autistic individuals in qualitative research should be   T i l    erm no ogyencouraged to increase awareness of the distinct way in which Autistic  Th  t i l  d h  i  i  d  ith th  individuals experience the world.5   e erm no ogy use ere s n accor ance w ei  d b  d lt  d th i  f ili  th t th    v ews expresse y a u s an e r am es a et  ‘ ti ti ’ b  d9   ‘It is important to have more research dedicated into exploring the erm au s c e use.experiences of older autistic adults  as there may be some exciting  13/1  interviewees in this study stated that they have no ,surprises ahead ’ 4 preference in terminology used. .     S d  D i / R h P  R i   Obj i  & M h d l  tu y es gn esearc rocess ecru tmentect ve et o o ogyInclusion Criteria = Age 50 +, diagnosis of Autism, T  i  f  th  i i ht i t  th  lif  i  f i di id l   o ga n rom e ns g n o e e exper ences o n v ua sable to fully partake in interview process. with Autism across the course of their life   .Interviewees were recruited via;  f  k fl  f th  EHU A ti  f  ‘Wid  d di  f A i     i d li i  con erence pac yer o e u sm con erence, er un erstan ng o ut sm can promote an mprove v ngT itt  FB  i  i t l U i it  l t i  i t &  ti  i t  f  i di id l  ith  w er, , v a n erna n vers y e ec ron cenv ronmen more accep ng soc e y or n v ua s w al tt  d b lli   diagnosis of Autism’  2 news e er an snow a ng..  Thi  i   G d d Th  d  i  i d h i d  s s a roun e eory stu y us ng n- ept sem structurei i   l  h  lif  i  f ld  i i  d l   nterv ews to exp ore t e e exper ences o o er aut st c a u ts toth  d t  th t id  i i ht i t  ti   th  lif  & ga er a a a prov es ns g n o au sm across e espanhow autistic individuals adapt  . D  f  fi  i i   l d i  h i  l i    ata rom rst nterv ew were ana yze us ng t emat c ana ys s, ad i t i   d t d t  di  th  id tifi d  t  secon n erv ew was con uc e o scuss emes en e , oensure clarity of researcher’s Personalised Interview Design understanding  Th  I i    d i d i di id ll  i h i i   P l dj  d  i l d d   and verify e nterv ew process was es gne n v ua y w t nterv ewees. ersona a ustments ma e nc u e ;    i i  nterpretat on  mode of interview that best suited interviewee (face to face  telephone  skype or instant messenger)    , , ,consideration of sensory issues    , f i i    structure o nterv ew, individual communication  and documentation preferences  ,preferred terminology   , f d  hi  ( bili   i hd  d   i i )   assurance o ata owners p a ty to w t raw ata post nterv ew . A l ti  f th  i iti l th  i   f  th  d t     P li i  R lt   se ec on o e n a emes emerg ng rom e a a are;re m nary esu s   Acceptance -experience and effect of   15 interviewees have been recruited into the study and have been interviewed at least once  ‘A i t ll dd  I'  till h ’ ili   .  ga ns a o s… m s ere res enceInitial analysis has taken place  Further analysis  secondary interviews and confirmation of ‘Burnout’ . , shared understanding is ongoing  (estimated completion Jan 2019)   Coping Strategies , .‘F i  h  F ’    ac ng t e utureS i  i i i  d i i   Importance of diagnosis  erv ce prov s on—appropr ate an nappropr ateSocialising ‘Importance of  prioritising own needs’  Insights into methodological approach will be disseminated via publication.  ‘Getting wise to myself’  Lif  l  ki  ( ff  f)  Trauma/PTSD  e ong mas ng e ect o V l  f ASC i l  Data collection has highlighted many positive aspects of Autism not often discussed in the P iti  tt ib t  f A ti   a ue o soc a groups.  os ve a r u es o u smV l bilit  literature.  Self care—importance of  u nera y   i l i i S i ( ) h i i il bl h // i k/1Faculty of Health &Social Care Edge Hill University 2 School of Nursing & Midwifery The University of Sheﬃeld3.Nat ona  Aut st c oc ety 2012  W at s Aut sm? Ava a e at ttp: www.aut sm.org.uR f          ,      .          ,         About autism/Autism and Asperger syndrome an introduction/What is autism aspx  (accessed e erences - - - - - - - - .2-10-2012).4 Happe, Francesca (2012) Autism in Old Age, NAS Conference, October 2012,  C  London  http://www autism org uk/news and events/nas conferences/interviews and talks aspx  5  Pellicano  E  Dinsmore  A and Char ontact. . . . - - - - - . . . , . , -J ki t @A ti Ed Hill man, T (2014) What should Autism Research Focus Upon? Community Views and Priorities from the United Kingdom. Autism 1-15 en r on u sm geDOI 10 1177/1362361314529627  6  P  S  & J h  B  (2005) D  Y  K  I h  A ’  S d ? Ri k  f  N 07796 : . . . ortway, . o nson, . o ou now ave sperger s yn rome s s o a on-Obvious Disability  Health  Risk & Society   7(1) 73 – 83  7 Howlin  P  Goode  S  Hutton  J  & Rutter  M  (2004) ‘Adult Outcome in Jennifer Kirton,  155 , , , . , . , . , . , .Child  i h A i ’  J l f Child P h l  d P hi  45 212 29  8  M k L di k 1  EB  P  E  B  M & F l  f H l h &  ren w t ut sm , ourna o syc o ogy an syc atry – . . u aetova‐ a ns a , .. erry, , aron, acu ty o ea t825 Povey  C (2012) Ageing in people with autistic spectrum disorder  International Journal of Geriatric Psychiatry  Vol 27  2  109  118  9 Social Care  Edge Hill University  jennifer.kirton@edgehill.ac.uk , . , , , - . , ,Kenny  L, Hattersley C, Mollins B, Buckley C, Povey C and Pellicano E. ( 2015) Which terms should be used to describe autism? Per- Ormskirk, L39 4QP. ti  f  th  UK ti  it  A ti  1 21  spec ves rom e au sm commun y. u sm -

What do older autistic adults feel are the most important factors that have assisted them in maintaining their own physical and mental well-being

https://research.edgehill.ac.uk/ws/files/21310463/ScottishAutism_preliminaryresults_DEc2018_finalamended.pdf

What do older autistic adults feel are the most important factors that have assisted them in maintaining their own physical and mental well-being

Abstract

Similar works

Full text

Available Versions

Edge Hill University Research Information Repository