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

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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

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self-determination noun(sèlfdî-tûrme-nâshen)

• 1. Determination of one's own fate or course of
  action without compulsion2. 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.

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Self-Determination in Personality Psychology

• Self-determination as a personality construct
  proposes that ones 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.

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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).

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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).

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A Functional Theory of Self-Determination

• Self-determined behavior refers to volitional
  actions that enable one to act as the primary
  causal agent in ones life and to maintain or
  improve ones 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 persons
  overall quality of life (Schalock, 1996).

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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.

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Self-Determination What Does Research Tell Us?
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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.

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Finding Summary 2 Self-Determination and Adult
Outcomes

• Multiple research studies find that a persons
  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.

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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.

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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.

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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.

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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 students 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.

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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.

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What do We Know about Self-Determination and
Autism?
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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

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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).

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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.

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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).

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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.

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Promoting Self-Determination

• Methods, Materials, Strategies

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Promoting Self-Determination

• Instruction on component elements of determined
  behavior
• Self-determination curricula and assessment
  materials
• Student-directed planning materials

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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

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Choice Making

• Making a choice
• Indicating a preference
• Between two or more options

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Napoleon Bonaparte

• Ability is of little account without
  opportunity

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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.

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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.
• Peoples preferences change. Just because a
  student liked something at one time doesnt mean
  he or she will like it at another time.
• Assess frequently.

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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).

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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
• students capacity to solve problems
• promote open inquiry and exploration
• encourage generalization.

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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 ones interactions with others.
• Any difficulty in understanding social and
  emotional cues will, in turn, impact a students
  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 aboveBauminger (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.

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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.

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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.

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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.

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Promoting Self-Advocacy Skills

• Skills needed to advocate on ones 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.

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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

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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).

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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.

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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
  planningindependent of their level of
  self-determinationenhances self-determination.

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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

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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.).

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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.

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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.

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What is the Teachers 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.

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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.

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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.

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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

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Advantages of Model

• Valid means of teaching students educationally
  relevant goals.
• Promotes student self-determination,
  problem-solving, goal setting skills.
• Enhanced motivation
• Fisher and colleagues findings that the act of
  choosing is, in and of itself, reinforcing.
• Sailor and colleagues hypothesis of functional
  competence suggests that motivation factor
  implicit in the mere act of causing something to
  happen.

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Efficacy of Interventions to Promote
Self-Determination

• Data exists to support the efficacy of the
  following interventions/programs
• Steps to Self-Determination (Hoffman Field,
  1995)
• Published by ProEd (http//www.proedinc.com)
• TAKE CHARGE for the Future
• Contact Dr. Laurie Powers at the University of
  Portland
• Self-Determined Learning Model of Instruction
  (Wehmeyer, Palmer, Agran, Mithaug, Martin,
  2000)
• Beach Center web site (http//www.beachcenter.org)
  

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Efficacy of Efforts to Promote Student Involvement

• Data exists to support the efficacy of the
  following interventions/programs
• Next S.T.E.P. (Halpern, et al., 1997)
• Published by ProEd (http//www.proedinc.com)
• Self-Directed IEP (Martin, Huber Marshall, Maxon,
  Jerman, 1997)
• Published by Sopris West (http//www.sopriswest.co
  m/)
• Information on Zarrow Center at OU website
  (http//education.ou.edu/zarrow/).

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Efficacy of Efforts to Promote Student
Involvement (cont.)

• Data exists to support the efficacy of the
  following interventions/programs
• Self-Advocacy Strategy (VanReusen et al., 2002).
• Contact University of Kansas Center for Research
  on Learning (http//www.ku-crl.org/).
• Whose Future is it Anyway? (Wehmeyer et al.,
  2005).
• Available online at OU Zarrow Center
  (http//education.ou.edu/zarrow/).

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Measuring Self-Determination

• The Arcs Self-Determination Scale (Wehmeyer et
  al)
• Self-report measure of self-determination for
  students with cognitive disabilities.
• AIR Self-Determination Assessment (Mithaug et al)
• Student, teacher, and parent report versions
• ChoiceMaker Self-Determination Assessment (Martin
  et al)
• Curriculum referenced measure.
• Wayne State University Self-Determination
  Assessment Battery (Field et al.)
• Student, parent, teacher versions, observation
  checklist
• All available online at OU Zarrow Center web site
  (http//education.ou.edu/zarrow/).

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Resources Websites

• UNCC Self-Determination/Self-Advocacy Synthesis
  Project site
• http//www.uncc.edu/SDSP/
• OU Zarrow Center website
• http//education.ou.edu/zarrow/
• KU Beach Center on Disability website
• http//www.beachcenter.org/

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Resources Books

• Teaching Student-Directed Learning (Agran et al.
  2003), Paul H. Brookes (http//www.pbrookes.com)
• Promoting Self-Determination in Students with
  Developmental Disabilities (Wehmeyer et al.,
  2007), Guilford Press (http//www.guilford.com/)
• Self-Determination Instructional and Assessment
  Strategies (Wehmeyer Field, 2007), Corwin Press
  (http//www.corwinpress.com/)