Promoting the Self-Determination of Youth and Adults with Autism Spectrum Disorders

1. Promoting the Self-Determination of Youth and Adults with Autism Spectrum Disorders Michael Wehmeyer, Ph.D. Professor, Special Education Director, Kansas University Center on Developmental Disabilities Senior Scientist, Beach Center on Disability University of Kansas

2. self-determination: noun(sèlf´dî-tûr´me-nâ´shen) 1. Determination of one's own fate or course of action without compulsion;2. Freedom of the people of a given area to determine their own political status; independence. self-determined, adj.-- self-determining, adj. The American Heritage Dictionary of the English Language, Third Edition (1992). Houghton Mifflin Company.

3. Self-Determination in Personality Psychology • Self-determination as a personality construct proposes that one’s life course is “determined” (e.g., caused) by either autonomous and heteronomous functions, where autonomous means self-governing or governed from inside, and heteronomous means governed from outside. • Doctrine of Determinism: The doctrine that all phenomena, including behavior, are effects of preceding causes.

4. Self-Determination and Disability • Within the context of the disability rights and advocacy movement, the construct as a personal characteristic has been imbued with the empowerment and “rights” orientation typically associated with the sense of the term as a national or political construct. Empowerment is a term usually associated with social movements, and typically is used, as Rappaport (1981) stated, in reference to actions that “enhance the possibilities for people to control their lives” (p. 15).

5. Self-Determination and Disability • "People with autism should be treated with the same dignity, respect, and equality as people without autism" (Bovee, 2000, p. 250-251). • "We [people with disabilities] don't have to be told what self-determination means. We know it is just another word for a life filled with rising expectations, dignity, respect and opportunities" (Williams, 1989, p. 2).

6. A Functional Theory of Self-Determination • Self-determined behavior refers to volitional actions that enable one to act as the primary causal agent in one’s life and to maintain or improve one’s quality of life. • A causal agent is someone who makes or causes things to happen in his or her life. • Self-determination contributes to a person’s overall quality of life (Schalock, 1996).

7. The Emergence of Self-Determination • Enhanced capacity as a result of: • attainment of developmental milestones; • acquisition of component elements. • Opportunity to assume control as a result of: • environments that support control and choice; • frequent experiences of choice and control. • Supports and accommodations.

8. Self-Determination: What Does Research Tell Us?

9. Finding Summary #1:Self-Determination Status • Research shows that youth/adults with disabilities are less self-determined than their non-disabled peers. • It is important, however, not to assume that this in any way reflects the capacity of people with disabilities to become self-determined. The research clearly shows that people with disabilities have many fewer opportunities to make choices and express preferences across their daily lives. • As such, efforts to intervene to promote self-determination are critical if being “self-determined” is an important outcome for youth with disabilities.

10. Finding Summary #2:Self-Determination and Adult Outcomes • Multiple research studies find that a person’s self-determination status predicts higher quality of life. • Self-determination status is positively correlated with more positive post-secondary outcomes, including employment, independent living, and community inclusion for youth with disabilities. • Young adults who are more engaged in personally-valued recreation activities are more self-determined, suggesting a reciprocal relationship between recreation activities and self-determination.

11. Finding Summary #2: Self-Determination and Adult Outcomes (continued) • Students with disabilities who leave school as self-determined young people: • Are more independent one year after graduation. • Are more likely to live somewhere other than where they lived in high school one year after graduation. • Are significantly more likely to be employed for pay at higher wages one year after graduation. • Are significantly more likely to be employed in a position that provides health care, sick leave, and vacation benefits three years after graduation. • Are significantly more likely to live independently three years after graduation.

12. Finding Summary #3:Factors Contributing to Self-Determination • Social abilities and adaptive behavior skills are related to more positive self-determination. • Choice-making opportunity is a strong predictor of self-determination. Research shows that the environments in which adults with disabilities live or work limit opportunities to make choices and restrict personal autonomy. • Although many people believe that people with intellectual disability cannot be self-determined because of their cognitive impairment, research consistently shows that while SD is positively correlated with IQ, that relationship is generally weak and IQ is not predictive of self-determination status.

13. Finding Summary #4:Perceptions of Self-Determination • Adults with disabilities themselves rank self-determination as more important than do professionals and parents/family members. • Special education teachers report that: • they are familiar with self-determination; • believe self-determination is an important component of transition planning; • believe that student involvement in planning is important; • their level of training, students’ type and level of disability, and type of teaching placement impact their ratings of the importance of promoting self-determination. • Parents of school-age students with disabilities perceive promotion of self-determination as important. • Report that they do not believe that their sons/daughters receive enough instruction on component elements of self-determined behavior at school.

14. Finding Summary #5: Efforts to Promote Self-Determination • Despite wide acceptance of the importance of self-determination, research has consistently found that explicit instruction to promote self-determination during the school years is limited, though more recent studies suggest that this situation may be changing. • Goals addressing self-determination are not included on many student’s Individualized Education Programs. • When efforts to promote self-determination are in place, there are few efforts to systematically assess the effect of those interventions. • Teachers report that barriers to promoting self-determination include: • Their belief about whether the student will benefit; • Insufficient time, particularly in context of No Child Left Behind; • Insufficient training to and knowledge about promoting self-determination. • Insufficient time to plan to integrate instruction to promote self-determination into the instructional day.

15. Finding Summary #6:Interventions to Promote Self-Determination • Data exists to support the efficacy of several self-determination-focused intervention models/programs, including: • Steps to Self-Determination (Hoffman & Field, 1995) • TAKE CHARGE for the Future (Powers et al., 2001) • Self-Determined Learning Model of Instruction (Wehmeyer, Palmer, Agran, Mithaug, & Martin, 2000) • Meta-analytic (group and single-subject design studies) of existing research show that that students with disabilities can acquire component elements of self-determined behavior (e.g., choice making, decision making, problem solving, goal setting and attainment, self-advocacy, self-regulation, perceptions of efficacy, self-awareness, self-knowledge) if taught. • Student-directed learning strategies particularly powerful.

16. What do We Know about Self-Determination and Autism?

17. What do We Know about Self-Determination and People with Autism? • Not much! • Several areas of particular focus are probably warranted: • Problem solving • Goal setting • Decision making • Self-awareness and self-knowledge

18. Issues in Problem Solving and Autism • Reciprocal social interactions involving the mutual, equitable exchange of socially-related information and emotions often pose significant difficulties for people with ASD. • Most social interactions require problem solving skills for successful navigation of the interaction. • Adolescents with Autism have demonstrated difficulty in determining social solutions to problems as well as difficulty in responding quickly in social situations (Channon, Charman, Heap, Crawford & Rios, 2001; Hill & Bird, 2006). • When compared to neurotypically developing adolescents, adolescents with HFASD generated fewer high quality solutions to social problems and were less likely to choose the best solutions, and exhibited lower levels of abstract problem solving (Channon, et al., 2001).

19. Issues in Problem Solving and Autism • Most research/practice to promote social/emotional understanding has focused exclusively on social skills, without addressing social problem solving. Some exceptions, though, exist: • Bauminger (2002) used role playing to teach students with ASD social problem solving. • Bernard-Opitz, Sriram, and Nakhoda-Sapuan (2001) developed video-based computer program to teach social problem solving. • Need much more research and practice pertaining to promoting problem solving skills, particularly social problem solving skills.

20. Issues in Goal Setting and Autism • Students with autism may have a difficult time attending to multiple goals. Research has shown that students with autism tend to be more sequential in their goal-directed behavior. They tend have difficulty engaging in multiple goal-directed activities concurrently, but also tend to jump from activity to activity in the process of goal attainment (Ruble & Scott, 2002).

21. Issues in Decision Making and Autism • Students with autism may have relatively more difficulty processing the emotions associated with the decision-making process, given that this is often a process characterized by uncertainty,which may be difficult for some students with autism spectrum disorder, when compared with other populations.

22. Promoting Self-Determination Methods, Materials, & Strategies

23. Promoting Self-Determination • Instruction on component elements of determined behavior; • Self-determination curricula and assessment materials; • Student-directed planning materials

24. Component Elements of Self-Determined Behavior • Choice-making • Decision-making • Problem-solving • Goal setting and attainment • Self-advocacy • Self-observation, evaluation and reinforcement • Internal locus of control • Positive attributions of efficacy and outcome expectancy • Self-awareness • Self-knowledge

25. Choice Making • Making a choice = • Indicating a preference • Between two or more options

26. Napoleon Bonaparte “Ability is of little account without opportunity”

27. Issues in Choice Making for Students with Autism Spectrum Disorders • Students with ASD have fewer opportunities to learn about preferences based on personal experiences than their non-disabled peers. • Students with ASD with communication impairments may not be able to express preferences in traditional ways. • Problem behavior as an expression of preference. • Students with ASD who have special interest areas may focus choices exclusively on that as opposed to wider range of options. • On the other hand, of course, special interest areas provide an opportunity to intergrate choice making into almost any activity.

28. Choice Making • Particularly important for childhood/early elementary. Provides opportunity to teach students they have a voice in their education. • Including a choice opportunity within behavioral interventions has been shown to improve outcomes. • People’s preferences change. Just because a student liked something at one time doesn’t mean he or she will like it at another time. • Assess frequently.

29. Integrating Choices Into Teaching • incorporating student choice as an early step in the instructional process; • increasing the number of choices related to a given activity which the student makes; • increasing the number of domains in which choices are made; • raising the significance in terms of risk and long-term consequences of the choices which the student makes; and • clear communication with the student concerning areas of possible choice, and the limits within which choices can be made (Shevin & Klein, 1984, pp. 164).

30. Promoting Problem-Solving • A problem is an activity or task for which a solution is not known or readily apparent. • Three focal points to instruction in problem solving: • problem identification; • problem explication and analysis; • problem resolution. • Should occur within environments that emphasize; • student’s capacity to solve problems; • promote open inquiry and exploration • encourage generalization.

31. Issues in Problem Solving for Students with Autism Spectrum Disorders • Many, if not most, of the types of problems that need to be addressed are social in nature and involve one’s interactions with others. • Any difficulty in understanding social and emotional cues will, in turn, impact a student’s capacity to identify and analyze the problem. • Most research/practice to promote social/emotional understanding has focused exclusively on social skills, without addressing social problem solving. • Some exceptions to above:Bauminger (2002) used role playing to teach students with ASD social problem solving. • Bernard-Opitz, Sriram, and Nakhoda-Sapuan (2001) developed video-based computer program to teach social problem solving.

32. Promoting Decision-Making Most models of decision making incorporate the following steps: • listing relevant action alternatives; • identifying possible consequences of those actions • assessing the probability of each consequence occurring (if the action were undertaken); • establishing the relative importance (value or utility) of each consequence; • integrating these values and probabilities to identify the most attractive course of action.

33. Goal Setting and Attainment • Goal setting theory is built on the underlying assumption that goals are regulators of human action. • Effects of goal setting on behavior is a function of goal difficulty and specificity as well as previous experience with the activity or action.

34. Goal Setting and Attainment • Instructional efforts to promote goal setting and attainment should focus on: • Goal identification and enunciation • Developing objectives to meet goals; • Identifying actions necessary to achieve goals; • Tracking and following progress on goals. • Participation in educational planning and decision-making as ideal generalization mechanism.

35. Promoting Self-Advocacy Skills • Skills needed to advocate on one’s own behalf; • Will focus on two common threads; • how to advocate; • what to advocate; • Particularly important during secondary education, should be tied directly to educational planning meeting.

36. Promoting Self-Advocacy Skills • How to advocate: • rights and responsibilities; • assertiveness vs. aggressiveness; • communicating effectively (one-on-one, small group) • negotiation, compromise and persuasion; • effective listening; • basic leadership and team skills

37. Self-Regulation and Student-Directed Learning • Self-regulation is as "a complex response system that enables individuals to examine their environments and their repertoires of responses for coping with those environments to make decisions about how to act, to act, to evaluate the desirability of the outcomes of the action, and to revise their plans as necessary" (Whitman, 1990, p. 373). • Self-regulated learning is “the process whereby students activate and sustain cognitions, behaviors, and affects that are systematically oriented toward the attainment of goals” (Schunk, 1994; p. 75). • Self-regulated behavior involves the use of self-direction and self-management to regulate the process of setting goals, developing action plans to achieve those goals, implementing and following the action plans, evaluating the outcomes of the action plan, and changing actions plans, if the goal was not achieved (Mithaug, 1993).

38. Student-Directed Learning Strategies • Self-instruction, self-monitoring, self-scheduling, self-reinforcement, and self-managed antecedent cue strategies. • Research has shown that interventions using student-directed learning/self-management strategies have led to improved problem solving skills, improved communicative behavior, improved daily living skills, better academic performance, and reductions in disruptive behavior for students with autism spectrum disorders.

39. Student Involvement and Self-Determination • Research has shown that students with disabilities are not major players in their IEP/transition planning meetings. • Research has also shown that students with disabilities can learn the skills to be active participants in their IEP/transition planning meetings. • Research suggests that student involvement has a reciprocal effect with self-determination. That is, students who are more self-determined are more likely to be involved in their educational planning, but getting students involved in their planning—independent of their level of self-determination—enhances self-determination.

40. Promoting Self-Awareness and Self-Understanding • recognition and identification of physical and psychological needs, and how to meet those needs; • identify and communicate own interests, beliefs and values; • understand and accept individual differences; • handling frustration and stress

41. Self-Determined Learning Model of Instruction • A plan or pattern that can be used to shape curricula, design instructional or assessment materials, and guide instruction in the classroom and other settings. • Models of teaching derived from theories about human behavior, cognition, or learning (e.g., information processing models; behavioral models; social interaction models, etc.).

42. Self-Determined Learning Model of Instruction • A model of teaching based on the principles of self-determination and student directed learning. • Primary emphasis is to enable students to apply a problem solving, goal oriented strategy to self-direct learning. • Model has 3 phases: • Setting a Learning Goal; • Constructing a Learning Plan; • Adjusting Behaviors; • Each Phase has 3 components: • Student questions; • Teacher objectives; • Instructional strategies.

43. What is Student-Directed? • The key to student-directed is that the student retains control over his or her learning process, even when others (teachers, parents, peers) participate. • Not the same as doing everything by yourself. That is, students will vary a great deal in the degree to which they can work through the materials independently. Factors which influence this include: • Reading or writing skills; • Confidence in working alone or in small groups; • Practice with self-directed instruction.

44. What is the Teacher’s Role? • Facilitator • Do what it takes to enable student to succeed; • Provide accommodations and support; • Teacher • Share expertise in promoting learning; • Source of information about education; • Advocate • Communicate to students that they can succeed; • Work collaboratively with student to achieve shared goals.

45. Instructional Process for SDLMI • Each phase has a problem to solve • Phase 1: What is my goal? • Phase 2: What is my plan? • Phase 3: What have I learned? • A problem is a task, activity, or situation for which a solution is not immediately identified, known, or obtainable. • Solving a problem is the process of identifying a solution that resolves the initial perplexity or difficulty.

46. Instructional Process for SDLMI • Solving the problem in each phase leads to the next phase. • Solving the “what is my goal” problem leads to setting a goal. • Setting a goal leads to the need for an action plan. • Solving the “what is my plan” problem leads to the design and implementation of an action plan to achieve the goal. • Implementing the plan leads to the need to track progress toward the goal. • Solving the “what have I learned” problem leads to either goal completion, revision of the plan, or revision of the goal.

47. Instructional Process for SDLMI • The problem in each phase is solved by answering a set of four questions. • The questions change based on the problem to be solved, but they represent the four steps in any problem solving process: • Identify the problem • Identify potential solutions to the problem • Identify barriers to solving the problem • Identify consequences of each solution