Toolkit

Making Your Own Decisions

Jacalyn (Jackie) G. Ryan
This Toolkit is about self-determination among autistic people and/or people with intellectual disabilities or other challenges. Self-determination refers to the process of making one's own decisions. The opportunity to make decisions supports individual well-being and opportunity. Strategies for moving forward are offered. The Toolkit has been written by Jackie Ryan, PhD (cand.).

 

Contents

 

Introduction2

Basic Psychological Needs for Self-Determination3

Competence3

Autonomy3

Relatedness4

Strategies to Promote Self-Determination5

Strategies to support a sense of competence5

Strategies to support autonomy6

Strategies to develop relatedness7

Self-Determination Curricula7

Person-centredness8

Summary9

References10

Appendix A: Resources13

Appendix B: Template for One-Page Profile (Adapted from Sanderson & Lewis, 2012) 14

 

 

 

Introduction

Being self-determined means you make choices and decisions about your life without undue pressure or interference from other people1 . It is a fundamental human right for everyone according to the United Nations’ Universal Declaration of Human Rights and Convention on the Rights of Persons with Disabilities. To be self-determined is to be in control of your own life. It does not mean being entirely independent or separate from other people when you make decisions. People seek input from others in making decisions. People consider how their decisions may have an impact on others. They compromise in their decision making because of the impact on others. When others must make choices for you, you are self-determined if you agree with the choices they make. Being self-determined is associated with a higher quality of life2–4 .

Autistic people are less self-determined than their non-autistic peers5–8 . Research has found that professionals, such as occupational therapists, speech language pathologists and educators, said that they value self-determination, yet often did not include autistic people in goal setting, or did not support the goals they identified6 Working with autistic people to set goals and encouraging them to further develop self-determination are beneficial. This can  support their quality of life and well-being. 

Self-determination theory provides a framework for promoting self-determination9 This theory states that all people have three basic psychological needs to be self-determined 10 . The needs are competence, autonomy, and relatedness10 . Competence refers to feeling a sense of mastery. Autonomy refers to being able to make your own choices. Relatedness refers to feeling that you belong. The importance of these notions has been found to apply across cultures and contexts (e.g., school, home, etc.). The next section will explore these ideas in more detail.

 

Basic Psychological Needs for Self-Determination

Competence

Competence refers to feeling capable and having a sense of mastery10 . A sense of competence is fostered when tasks are of optimal challenge. That is, the task is neither too easy, nor too hard. However, the feeling of competence can be easily thwarted or undermined. For example, if the challenge is too difficult, or if negative feedback is pervasive, the sense of competence is likely to be undermined.

Jonah is a 7-year-old boy who attends a regular grade two classroom. There is one educational assistant in the classroom, which has three students in addition to Jonah with support needs. Jonah likes dinosaurs, trains, gym class, math, recess, and soccer. Jonah is working at grade level in all subjects except math. But Jonah thinks he is not smart enough to understand math. Feeling competent is being undermined when Jonah thinks about math lessons and trying to do math without more support.

 

Autonomy

Autonomy means that a person makes their own choices or decisions, sometimes with input from others10 . Autonomy is different from independence. Independence means not relying on others, nor looking to others for opinions or guidance in one’s conduct. Autonomy  is an important factor for better quality of life. However, professionals often exert more control over autistic people instead of supporting their autonomy10 . For example, autistic individuals’ interests bring them joy. Professionals, however, may feel that an intense interest is unusual and attempt to replace that interest. Replacing an interest reduces the autistic person’s autonomy. This can reduce enjoyment that the intense interest brings to the autistic person. The choice of what is of interest and how one engages in interests should be up to the individual. It is important to be able to enjoy what is of value. An alternative for the professional might be to enhance learning by demonstrating similarities between the interest and what can be done. Areas of intense interest and sources of joy could be used to enhance learning 10.

Zach is 17 years old and in grade 11. He attends mainstream school and is on track to graduate. Zach is hoping to attend university to study forestry. His priority is making sure he has the grades he requires for university entrance. Zach’s favourite pastime is playing Minecraft. He interacts with many of the players in the game. He has occasionally been bullied while playing the game. His mom is concerned about this and worried that he does not have friends. Zach’s mom thinks he should take a social skills course, while Zach thinks it is unnecessary and would take too much of his already limited free time. His unease may reflect his thinking about what it will be like to take the course, or being told to take a social skills course.  Zach’s sense of feeling autonomous is thus being undermined.

 

Relatedness

Social relatedness refers to belonging and feeling connected to others10 . People tend to assume that autistic people have challenges with relatedness as it is part of the DSM-5’s diagnostic criteria11 . However, Damian Milton suggested that challenges with social communication and interaction are caused by both autistic and non-autistic people lacking an understanding of each other’s social styles 12 . That is, the problem does not lie within the autistic person nor within the non-autistic person, but it lies in the communication between the two. Milton calls this the double empathy problem. Recently, Crompton et al. did an experiment to see if there were differences in the transfer of information between chains of autistic people, non-autistic people, and a mix of both. A researcher told a story to the first person in the chain, who told it to the next person, and so on13. The final (eighth) person in the chain told the story back to the researcher who compared it to the original story. The researchers found there was the same decline in transfer of information in chains of autistic people as in chains of non-autistic people. But they found a steeper decline in information transferred in mixed chains of autistic and non-autistic people 13. This result supports Milton’s ideas of the double empathy problem. While misunderstanding can affect all people, autistic people may enjoy opportunities for connection and friendship with other autistic people. 

Samira is 10-year-old girl who attends a special education classroom. The classroom has 12 students, one teacher, and two educational assistants. Samira enjoys reading, animals, going for nature walks, skiing, singing, and fashion. Samira finds math difficult. Samira’s mother finds that Samira arrives home from school tired and unhappy almost every day, and reports that she has no friends at school with similar interests. Could it be that Samira is missing a sense of relatedness at school? 

 

Strategies to Promote Self-Determination

Strategies to support a sense of competence

Strategies for professionals or others to support the development of a sense of competence include the following.10,14–16

  1. Identify barriers and develop mitigating strategies. 
  2. Focus on optimal challenges. That means the ‘just right’ level of challenge based on current performance and opportunity for growth.
    1. This could include task analysis and chaining.
    2. Find experiences to support the achievement of goals.
    3. Set mastery goals, rather than performance goals. Mastery goals aim to enhance the learner’s knowledge or skills. Performance goals focus on the learner outperforming others.
    4. Build upon strengths.
  3. Encourage/teach self-monitoring of progress, skill level or performance. 
  4. Offer clear and positive informational feedback. This means feedback that affirms or promotes autonomy and competence.
  5. Have clear and achievable expectations.
  6. Have a well-structured environment.
  7. Nurture the individual’s interests.

 

Strategies to support autonomy

Strategies for professionals and others to support the development of autonomy include the following.10,17

  1. Take the viewpoint of the person. 
  2. Provide a meaningful rationale for activities, behaviours and requests. 
  3. Acknowledge feelings of resistance. 
  4. Provide meaningful choice. 
  5. Use informational, non-controlling language.
  6. Ensure the individual has a functional communication system and it is available.
  7. Encourage initiative.
  8. Be responsive to the person’s comments and questions.
  9. Allow time for the individual’s independent work or activities.
  10. Create opportunities for individuals to work in their own way.
  1. Acknowledge signs of improvement or mastery.
  2. Offer progress-enabling hints when the person seems stuck.
  3. Ensure access to learning materials.
  4. Nurture the person’s interests.

 

Strategies to develop relatedness

Strategies for professionals and others to support a feeling of belonging and relatedness include the following.10,16

  1. Show unconditional positive regard, accepting autistic people for who they are. This is especially important when setting intervention goals. It is best to set goals that are meaningful to the autistic person, rather than goals that aim to reduce autistic traits.
  2. Take interest in the person by showing genuine interest in the autistic person’s thoughts and experiences. Devote time.
  3. Acknowledge conflict to reflect that humans are all different. Taking the autistic person’s frame of reference is experienced as caring.
  4. Be authentic, transparent, honest and open.
  5. Share important and meaningful perceptions and experiences.
  6. Be trustworthy and reliable.
  7. Show genuine warmth and concern.

 

Of importance, stigma, ostracizing, and bullying thwart relatedness.

Self-Determination Curricula

Component skills of self-determination can be taught1 . There are several curricula for teaching the skills of self-determination including, (1) Putting Feet on My Dreams 18 , (2)  ChoiceMaker Self-Determination Curriculum19 , and (3) the Self-Determined Learning Model of Instruction (SDLMI) 20. The SDLMI focuses on the skills of choice-making, decision-making, goal-setting, problem-solving, planning, self-management, goal attainment, self-advocacy, self-awareness, and self-knowledge 20. Through repeated cycles of setting a goal, taking action to achieve the goal, and adjusting the goal or plan, students practice each of the above mentioned skills to increase their self-determination 20. The SDLMI has been modified for young adults in post-secondary or transition programs, the Self-Determined Career Design Model. 

Person-centredness

Person-centredness involves being with people in ways that help you to deeply know and understand the person you are supporting21 . The term was coined by Michael Kendrick to describe the need for individualized support at the individual level, rather than at the system level. There are many tools to support person-centred planning and practice 22–26. There are links to these resources in Appendix A.

Appendix B offers a one-page profile, which is a short, strengths-based document that can guide discussion of individualized support needs 27. This tool can provide a record of what the person likes, their goals, how they like to be supported, what people admire about them, and what is important to them. This information can be used to develop different kinds of plans for the individual such as a learning plan, a career plan, a daily living plan, etc. Armstrong discusses the importance of strengths-based practice, 

The years I spent as a special education teacher and as a consultant to schools convinced me that the key to helping children with deficits is to first find out as much as we can about their strengths. As part of my consulting work, I used to go into school districts and ask administrators to give me the cumulative files of their most difficult students. I would then take a yellow marker and highlight all the strengths that I noticed: teachers' comments, test scores, grades, and other positive data. Oftentimes this process would reduce a cumulative file of a hundred or more pages to two or three sheets. I would then distribute these two or three pages to participants at the student's IEP meeting. Upon confronting only positive information about the child, participants in the meeting would begin to remember other positive events and attributes, and this would very often lead them to generate new constructive strategies for helping the student succeed in school 28 (pp 6-7).

 

Summary

This toolkit summarized current understandings of self-determination. Strategies to enhance self-determination were provided. Person-centredness was discussed. An overview of tools to promote self-determination was presented. Self-determination enhances the well-being of all people. Understanding how self-determination is developed provides important information for intervening to promote its development. The individual component skills can be explicitly taught. Rich opportunities to practice these skills will encourage the development of self-determination. The following final vignette introduces Juan’s experience related to self-determination in considering his career. Despite challenges and with support from others, Juan is demonstrating self-determination.

Juan is an autistic 18-year-old. He attends his community high school and is due to graduate in June. He has applied and been accepted to attend a technology school in his hometown to become a baker. He hopes to open his own bakery some day. Juan was bullied in junior high school. But he had teachers who were supportive of him and his needs which helped reduce some of the stress he endured as a result of being bullied. Juan’s parents have been over-protective at times; however, they are delighted with the confident, self-determined young man he has become.
 

References

1.         Wehmeyer ML. A functional model of self-determination describing development and implementing instruction. Focus on Autism and Other Developmental Disabilities. 1999;14(1):53-61. doi:10.1177/108835769901400107

2.         Lachapelle Y, Wehmeyer ML, Haelewyck M-C, et al. The relationship between quality of life and self-determination: An international study. Journal of Intellectual Disability Research: JIDR. 2005;49(Pt 10):740-744.

3.         Shogren K, Wehmeyer ML, Palmer SB, Forber-Pratt AJ, Little TJ, Lopez S. Causal agency theory: Reconceptualizing a functional model of self-determination. Education and Training in Autism and Developmental Disabilities. 2015;50(3):251-263.

4.         Wehmeyer ML, Schwartz M. The self determination focus of transition goals for students with mental retardation. Career Development for Exceptional Individuals. 1998;21(1):75-86. doi:10.1177/088572889802100107

5.         Chou Y-C. Autism and self-determination: Measurement and contrast with other disability groups. Published online 2013. Accessed March 25, 2021. https://kuscholarworks.ku.edu/bitstream/handle/1808/15125/Chou_ku_0099D_12764_DATA_1.pdf;jsessionid=47CB89B76F43C61F205A208AC9B0E3F3?sequence=1

6.         Hodgetts S, Richards K, Park E. Preparing for the future: Multi-stakeholder perspectives on autonomous goal setting for adolescents with autism spectrum disorders. Disability and Rehabilitation. 2018;40(20):2372-2379. doi:10.1080/09638288.2017.1334836

7.         Nonnemacher SL, Bambara LM. “I’m supposed to be in charge”: Self-advocates’ perspectives on their self-determination support needs. Intellectual and Developmental Disabilities. 2011;49(5):327.

8.         Weiss JA, Riosa PB. Thriving in youth with autism spectrum disorder and intellectual disability. Journal of Autism and Developmental Disorders. 2015;45(8):2474-2486. doi:10.1007/s10803-015-2412-y

9.         Ryan RM, Deci EL. Self-determination theory and the facilitation of intrinsic motivation, social development, and well-being. American Psychologist. 2000;55(1):68-78. doi:10.1037/0003-066X.55.1.68

10.       Ryan RM, Deci EL. Self-Determination Theory : Basic Psychological Needs in Motivation, Development, and Wellness. The Guildford Press; 2017.

11.       American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders. 5th ed. Author; 2013.

12.       Milton D. On the ontological status of autism: The ‘double empathy problem.’ Disability & Society. 2012;27(6):883-887. doi:10.1080/09687599.2012.710008

13.       Crompton CJ, Ropar D, Evans-Williams CVM, Flynn EG, Fletcher-Watson S,. Autistic peer to peer information transfer is highly effective. Autism. 2020;24(7):1704-1712. doi:10.1177/1362361320919286

14.       Adams C, Khojasteh J. Igniting students’ inner determination: the role of a need-supportive climate. Journal of Educational Administration; Armidale. 2018;56(4):382-397. doi:10.1108/JEA-04-2017-0036

15.       Fransen K, Boen F, Vansteenkiste M, Mertens N, Vande Broek G. The power of competence support: The impact of coaches and athlete leaders on intrinsic motivation and performance. Scandinavian Journal of Medicine & Science in Sports. 2018;28(2):725-745.

16.       Ryan RM, Deci EL. Intrinsic and extrinsic motivation from a self-determination theory perspective: Definitions, theory, practices, and future directions. Contemporary Educational Psychology. 2020;61:101860. doi:10.1016/j.cedpsych.2020.101860

17.       Reeve J. Teachers as facilitators: What autonomy‐supportive teachers do and why their students benefit. The Elementary School Journal. 2006;106(3):225-236. doi:10.1086/501484

18.       Fullerton A, Coyne P. Developing skills and concepts for self-determination in young adults with autism. Focus on Autism and Other Developmental Disabilities. 1999;14(1):42-52. doi:10.1177/108835769901400106

19.       Martin JE, Marshall LH. ChoiceMaker: A comprehensive self-determination transition program. Intervention in School & Clinic. 1995;30(3):147. doi:10.1177/105345129503000304

20.       Shogren K, Raley S, Burke KM, Wehmeyer M. The Self-Determined Learning Model of Instruction Teacher’s Guide. Kansas University Center on Developmental Disabilities; 2018. Accessed March 25, 2021. https://selfdetermination.ku.edu/wp-content/uploads/2019/05/Teachers-Guide-2019-Updated-Logos.pdf

21.       Kendrick M. Person-centeredness: A characteristic of people, not systems. Published online 2000. Accessed March 25, 2021. https://www.personcenteredplanning.org/kendrick.pdf

22.       Beadle-Brown J, Hutchinson A, Whelton B. Person-centred active support – Increasing choice, promoting independence and reducing challenging behaviour. Journal of Applied Research in Intellectual Disabilities. 2012;25(4):291-307. doi:10.1111/j.1468-3148.2011.00666.x

23.       O’Brien J, Lovett H. Finding a way toward everyday lives: The contribution of person centered planning. Published online February 1993. Accessed March 25, 2021. http://eric.ed.gov/?id=ED356596

24.       Pearpoint J, O’Brien J, Forest M. PATH: Planning Alternative Tomorrows with Hope: A Workbook for Planning Positive Possible Futures. 2nd ed. Inclusion Press; 2001.

25.       Sanderson H, Thompson J, Kilbane J. The emergence of person‐centred planning as evidence‐based practice. Journal of Integrated Care. 2006;14(2):18-25. doi:10.1108/147690182006000014

26.       Smull M W, Sanderson H. Essential Lifestyle Planning for Everyone. The Learning Community; 2009.

27.       Sanderson H, Lewis J. A Practical Guide to Delivering Personalisation: Person-Centred Practice in Health and Social Care. 1st edition. Jessica Kingsley Publishers; 2012.

28.       Armstrong T. Neurodiversity in the Classroom: Strength-Based Strategies to Help Students with Special Needs Succeed in School and Life. Illustrated edition. Association for Supervision & Curriculum Development; 2012.

 


 

 

Appendix A: Resources

  1. Self-Determination Learning Model of Instruction:  https://selfdetermination.ku.edu/homepage/intervention/
  2. Person Centred Practice and One Page Profiles:  http://helensandersonassociates.co.uk/person-centred-practice/one-page-profiles/
  3. The PATH Process:  https://inclusion.com/path-maps-and-person-centered-planning/


 


 

Photo by STIL on Unsplash

 

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