Quality of Life Among Adults with High Functioning Autism ASHA Conference 2014

Transcription

1 Quality of Life Among Adults with High Functioning Autism ASHA Conference 2014 Katharine Moroney B.S., B.A., Graduate Fellow Jamie Hall B.S., Graduate Fellow Mary V. Andrianopoulos Ph.D., CCC-SLP

2 Acknowledgements This research was supported by the U.S. Department of Education [U.S. DOE, H325K120327) awarded to Dr. Mary Andrianopoulos at the University of Massachusetts-Amherst. However, the contents of this presentation do not necessarily represent the policy of the U.S. DOE, and you should not assume endorsement by the Federal Government. 2

3 Disclosure Katharine Moroney has nothing to disclose, except that she received funding from the US DOE, H325K Jamie Hall has nothing to disclose, except that she received funding from the US DOE, H325K Mary Andrianopoulos has nothing to disclose, except that she received funding from the US DOE, H325K

4 Introduction: Research Focus Autism Spectrum Disorder (ASD) High Functioning Autism (HFA) Adults vs. Children 4

5 Quality of Life World Health Organization (WHO) definition of Quality of Life (QoL): Physical health Psychological state Level of independence Social relationships Personal beliefs Relationship to salient features of environment 5

6 QoL & HFA Mainstream measures do not predict QoL Quality peer relationships predict social functioning rather than cognitive abilities Academic success is not predictive of Social success 6

7 Areas Found to Predict QoL Employment Social Support Psychological Well-being Independence 7

8 Research Question QoL as a multidimensional construct Research Question: What specific content areas affect QoL in adults with HFA? 8

9 Methods: Sample Population Participants: Individuals diagnosed with Autism or Social Pragmatic Communication Disorder according to the DSM-IV or DSM-5 Age: 18+ IRB Approved by University of Mass-Amherst 9

10 Methods: Procedures Work and Well-Being Survey Instrument 6 Domains / Categories 1. General Happiness (22) 2. Employment (7) 3. Living Situation (5) 4. Social Support (4) 5. Education (4) 6. General Health (3) 49 Questions Total 10

11 Methods- Question Summary General Health General Happiness 45% 6% 8% Education 15% 10% 8% 8% Social Support Demographics Employment Living Situation 11

12 Methods: Recruitment Autism support Facebook pages Contacted Administrators of several groups to post survey Center for Community Resources for People with Autism UMass Disability Services Flyers around Amherst, MA area 12

13 Methods: Participants N=37 Females: N= 23 Males: N= 14 Age range: years Mean age= 38.7 years 13

14 Methods: Participants Number of Participants Age Range 14

15 National Representation 15

16 International Representation 13 responders were from outside of the United States 16

17 Results: Statistical Analyses Phi Coefficient Determined associations between two variables Ranges from -1 to +1, where 0 is no relationship Fisher exact probability test Statistical significance Alpha set to 0.05 for statistic significance 17

18 Results- What do you do when you are depressed? Keep to Self Often Worried/ Anxious Not Often Worried/ Anxious Social Often Worried/ Anxious Not Often Worried/ Anxious 8% 92% 36% 64% Phi Coefficient: -0.36; P=

19 Results- Do you have friends at work? Friends at Work No Friends at Work Never Look Forward to Going to Work Never Look Forward to Going to Work Always Look Forward to Going to Work Always Look Forward to Going to Work 31% 69% 75% 25% Phi Coefficient: -0.35; P=

20 Results- Services Received No Services (69%) Occupational Therapy (2%) Physical Therapy (3%) Speech Therapy (4%) ABA Therapy (4%) Guidance/ Counseling (18%) 20

21 Results- Employment Areas Work With Animals (3%) Medicine (3%) Customer Service (60%) Business (10%) Technician/ Engineer (10%) Writer/ Artist/ Teacher (14%) 21

22 Results- Living Situation With Parent/ Guardian (37%) With Relatives (3%) With Pet (6%) With Children (9%) With Spouse/ Partner (33%) Alone (12%) 22

23 Results- Social Life Questions Family Support Yes No Talk to Close Friend Yes No Prefer to do things alone Yes No 84% 16% 44% 56% 38% 62% 23

24 Results- This Activity Makes Me Happy Yes No 24

25 Conclusions Support not found to be significant Employment concerns Importance vs. Happiness Safety 25

26 Conclusions Greatest influence on QoL Employment College enrollment Social interactions Perception of safety 26

27 Recommendations Investment and implementation in programs that improve outcomes that yield a better QoL Build on strengths 27

28 Limitations Small sample size Self-report diagnosis Sample bias United States Technology bias 28

29 Future Directions QOL ( ) Moroney QOL Sample population of adults with high and low functioning Autism This sample will be age, gender, and education matched Friedman QOL QoL measure in the works for teens under 18 with Autism 29

30 References American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Arlington, VA: American Psychiatric Publishing. Billstedt, E., Gillberg, I. C., & Gillberg, C. (2011). Aspects of quality of life in adults diagnosed with autism in childhood: A population-based study. Autism : The International Journal of Research and Practice, 15(1), Burgess, A. F., & Gutstein, S. E. (2007). Quality of life for people with autism: Raising the standard for evaluating successful outcomes. Child and Adolescent Mental Health, 12(2), Cimera, R. E., & Cowan, R. J. (2009). The costs of services and employment outcomes achieved by adults with autism in the US. Autism : The International Journal of Research and Practice, 13(3), 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 : The International Journal of Research and Practice, 10(5), Saldana, D., Alvarez, R. M., Lobaton, S., Lopez, A. M., Moreno, M., & Rojano, M. (2009). Objective and subjective quality of life in adults with autism spectrum disorders in southern spain. Autism : The International Journal of Research and Practice, 13(3), The WHOQOL Group (1995) World Health Organization quality of life assessment (WHOQOL): Position paper from the World Health Organization. Social Science & Medicine 41: