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As noted in Uniquely Human
, autism is a passionate affair. The culture of autism has a long history of strong and divergent opinions on many topics: How should autism be defined and diagnosed? How would it be best to support autistic people in educational, community, and vocational settings? This guide aims to encourage thoughtful discussion and reflection about many subjects raised in Uniquely Human
. It is designed to be used as a guide for instructors in classes and for reading groups. Many have found that listening to episodes of “Uniquely Human: The Podcast” (www.uniquelyhuman.com), further enhances the depth and breadth of discussions. We hope this guide and the podcast will inspire respectful consideration and productive discussion from a variety of perspectives. Introduction
1. Though Dr. Prizant respects an individual’s personal choice, he has shifted from “person-first language” (e.g. “a person with autism”), used in the first edition of Uniquely Human
, to “identity first” language (e.g. “an autistic person”), which communicates that autism is an essential and inseparable part of one’s identity.
Why the change? First, taking the perspective of a person on the autism spectrum, which do you prefer? (a) using person-first language, b) using autistic as a personal descriptor, c) no strong opinion. Why? [Facilitator note: For larger groups, ask how many fall into each of the categories].
Based on your personal experience, do you find that professionals, caregivers, or family members have a different preference? Why?
Have readers take the stand opposite of their preference for the use of “person-first language,” or for using autistic as a descriptor of a person. Debate the two contrasting positions.
2. There are many ways to reveal or share a person’s diagnosis of autism with parents, family members, teachers, or even a potential employer.
Have you observed a diagnosis being shared in a manner that you believe is not helpful, that engenders fear and anxiety, and that does not communicate a hopeful perspective? Describe that experience.
Have you observed a diagnosis being shared in a manner that is helpful and supports a hopeful perspective? Describe that experience.
If you have experienced both, identify some critical differences between the two approaches.
3. Can you think of a person you have known who probably was on the spectrum but was not yet formally diagnosed (or had not disclosed their diagnosis)? How did other people react to this person? What was their perception of the person? If a diagnosis was given or disclosed, did that change other people’s reactions or perceptions? PART ONE: Understanding Autism
Chapter 1: Ask “Why?”
1. Dr. Prizant writes that “Difficulty staying well-regulated emotionally and physiologically should be a core, defining feature of autism.”
Do you agree or disagree? Construct an argument for your position with examples from your own experiences.
2. Discuss the similarities and differences between autistic people and neurotypical people in reference to:
a) Factors or triggers that cause dysregulation
b) Signals of dysregulation that may be observed in a person
c) Strategies that a person may use in attempting to cope with dysregulation
3. Dr. Prizant contends that people may be a primary source of dysregulation. Have you ever observed this? Are there similarities to how other people might serve as the source of dysregulation for neurotypical individuals?
Chapter 2: Listen
1. Historically, professionals have referred to language characteristics of autistic people as deviant, irrelevant, bizarre, and noncommunicative. These characterizations were often first noted in the clinical and research literature, while parents and those close to autistic people often found meaning in their language. Why do you think this dichotomy existed for so many years—and still does to some extent?
2. The author’s study of echolalia took into consideration many factors previously not examined. What were some of these factors, and how did that contribute to changing our understanding of echolalia?
3. Dr. Prizant writes that one foundation of building trust is for partners to listen carefully and assume that what may appear unconventional or nonsensical may actually be an attempt to communicate. From the perspective of an autistic person, why do you believe this is so essential? What are some of the challenges in taking this approach?
Chapter 3: Enthusiasms
1. Using the terms “enthusiasm” or “passion” instead of “obsession” is emblematic of a shift in attitudes about the interests of autistic people. How does this shift affect approaches to supporting academic and vocational success for autistic children and adults?
2. How do specific interests relate to the unique learning style and learning strengths of autistic people? In your experience, is an intense focus on an area of interest always desirable or helpful?
3. How might parents or teachers use enthusiasms in a beneficial manner, such as supporting relationships with peers and active participation in family and community activities?
Chapter 4: Trust, Fear, and Control
1. Dr. Prizant explains that autism can be understood as a “disability of trust.” How is this perspective different from more traditional definitions and descriptions of autism? Does this “trust” perspective provide any additional insight into how best to understand and support autistic people?
2. Ros Blackburn, an autistic woman, has said: “Because I find it so difficult to read the behavior of other people, what they do often comes across as very sudden and threatening to me.” What are the implications of this insight for how neurotypical must behave and, when necessary, change their style of social interaction?
3. “Controlling behavior” has been described by some professionals as an undesirable pattern observed in autistic people. However, Dr. Prizant contends that it is a natural response to fear and anxiety. Describe types of “controlling behavior” in autistic people that are similar to what you have observed in neurotypicals. Discuss a few strategies to help a person feel less need to be in control, or to have some control in a more socially desirable manner.
Chapter 5: Emotional Memory
1. How does the concept of “emotional memory” help us better understand reactions of autistic people that may be confusing? How might extreme reactions be similar to challenges related to PTSD (Posttraumatic Stress Disorder)? How might “trauma-informed” approaches be helpful in such circumstances?
2. Autistic people often possess a relatively strong rote memory. What are the potential benefits as well as the potential challenges of this learning style? Based on your experience with persons who have a similar pattern of abilities, share some examples of how you have capitalized on the potential benefits or have dealt with the challenges.
3. Give some examples of how you, or others you have observed, attempt to replace negative emotional memories with positive emotional memories. Provide examples of strategies that have worked, as well as some that have not.
Chapter 6: Social Understanding
1. It has been said that autistic people, due to their neurological differences, have limitations in social intuition. What does this concept mean to you? What are the implications of understanding and supporting people who may have such limitations?
2. With a deeper appreciation of the challenges of social understanding, reframe/challenge the following descriptions of people with autism and provide more accurate descriptions.
• They are rude and too direct.
• They talk only about their interests and don’t shift to topics of interest to you.
• They ask too many questions, and often the same ones over and over.
3. It can be challenging for autistic people to recognize and express their own emotions, though this capacity varies greatly across individuals. What aspects of emotional understanding and emotional expression seem to be particularly difficult, and why do you think that is so? Discuss misguided versus more reasonable ways to help with emotional understanding and expression. PART TWO: Living on the Autism Spectrum
Chapter 7: What It Takes to “Get It”
1. Without referring to Uniquely Human
, discuss three qualities of people you have observed who have the ability to “connect” with autistic people, and give at least two specific examples of those qualities in action. Discuss how the qualities you identify align with or are different from those listed in Chapter 7.
2. What kinds of support would “It-less” people benefit from to help them to “get It.” Give specific examples of when you have seen “It-less” people evolve into “got It” people? If this evolution has happened to you, please describe what has been most helpful.
3. Role-playing: Break down into pairs, with one person being autistic and the other person being a teacher or therapist. Identify an activity you are engaged in, with the teacher/therapist engaging in “It-less behavior” for five minutes. Each participant should then discuss how they felt in the activity. Reverse roles with the teacher/therapist engaging in “got It” behavior. Each participant should then discuss how they felt in the activity.
Chapter 8: Wisdom from the Circle
1. Parents often find themselves between “a rock and a hard place,” as their parental instincts move them to request and, if necessary, advocate strongly for the best teachers and supports for their child. However, if they push too hard, or in a way that is off-putting to others, they risk damaging relationships with those whom they need to rely on to care for their child. Select one pair of participants and role-play, with one being a teacher or administrator and the other participant being a parent. In this first role-play, the parent should have a style that is more “aggressive” than “appropriately assertive” when requesting a change in his/her child’s program. Discuss as a group a way to change the dynamic for it to be more successful. Then in a second role-play, demonstrate a style that is more “appropriately assertive” than “aggressive.” Participants should then reflect on their feelings and comfort level during the simulations.
2. Discuss challenges that parents potentially face in public when they have a child who engages in behavior that is difficult for other people to understand. What is the range of feelings that a parent might experience? What strategies would you suggest for parents to use in dealing with difficult public situations? This can also be set up as a role-play, with one participant being the parent, a second being the autistic child or adult, and two to three others being onlookers who react in less than helpful ways.
3. Discuss five helpful things that professionals can do to support families on their journey of raising an autistic family member.
Chapter 9: The Real Experts
1. As Bob Dylan sang, “The times they are a changin’.” For decades, neurotypicals have had to guess about the experience of autistic people. Autistic people now say, “Nothing about us without us” (the motto of the disability advocacy community), as they have become important voices in establishing disability policy and in expressing their opinions about various treatment approaches. Discuss three significant areas of change that have come about due to this movement.
2. Identify three significant “take-aways” that you have learned from autistic people, either from their writings, lectures, or your personal experiences with them.
3. The neurodiversity movement has emerged, in large part, due to self-advocates seeing themselves and other disabled people, and their personal experiences, as different, not as deficient. Some misinterpret this movement as conveying the message that autistic and disabled people do not need support and should just be left alone. Break into groups to debate the pros versus the possible cons of the neurodiversity movement.
Chapter 10: The Long View
1. The stories in this chapter trace the lives of autistic individuals over several decades. Discuss the value of this kind of developmental “long-view” perspective of the experience of autism. Discuss from the standpoint of a professional, as well as from that of a family member.
2. Give a number of examples of how a professional or service provider may “join” a family on their journey. Include in this discussion specific strategies to develop a trusting relationship with parents and other family members.
3. Parents and family members may evolve through stages from first understanding that a child is not developing typically—through all the transitions in the school years and into adulthood. Discuss some of the stages that you have observed and the challenges faced by families you know. How can professionals and service providers be respectful, understanding, and helpful based on where a family is on their journey. PART THREE: The Future of Autism
Chapter 11: Reframing Autistic Identity
1. Dr. Prizant discusses Dr. Stephen Shore’s approach for talking about autism to a child or adult who may not be aware of the diagnosis. Have you seen this or similar approaches, or used them yourself? If so, how did the autistic person respond? If not, what about this approach might be helpful, or possibly difficult to implement?
2. A significant part of the neurodiversity movement is moving from seeing autism only through the lens of pathology to adopting autism as an essential part of one’s identity. In your experience, what are the benefits and challenges of this shifting perspective? How might this the notion of autistic identity vary based on a person’s age (e.g., child or adult), and the level of challenge a person experiences (e.g., a person who is intellectually disabled and needs substantial support vs. a person who requires less support)?
3. Intersectionality offers a helpful way to understand how autism overlaps with other aspects of a person’s identity, such as race, religion, gender identity, or ethnicity, in order to provide appropriate supports and services. Share some of your personal experiences in which this overlap has been a significant factor. What impact did this have on your experience as a parent, autistic person, or service provider?
Chapter 12: Giving Back, Leading the Way
1. Select two of the six individuals profiled in this chapter and highlight the major take-aways that you have gleaned from their stories. How will you apply what you have learned from them in your life as a parent, service provider, or autistic individual?
2. Some have suggested that the experiences of individuals without greater communicative and intellectual abilities are of little help in understanding and supporting autistic people who require more significant support due to the degree of challenges they experience. Do you agree or disagree, and why? If you disagree, give examples of how those with fewer support needs have increased your understanding of those with greater needs?
3. The individuals profiled in this chapter not only have personal stories of resilience and achievement but also have found ways to give back and support the autistic and disabled communities. What’s most striking to you about their efforts? How has their work helped them achieve a sense of purpose and self-worth?
Chapter 13: Energize the Spirit
1. Discuss this question: In your experience, what types of activities tend to foster engagement and participation of autistic people and generate positive emotions and experiences? Why is it important to infuse such experiences in the flow of daily life?
2. Discuss the importance of supporting happiness and positive emotion as opposed to teaching functional life skills. Are these really diametrically opposed positions, or is there a middle ground that can be reached? If so, give some examples.
3. Discuss the role of the arts in helping to “energize the spirit” of people on the spectrum (and all people). Provide specific examples of innovative activities you are aware of for autistic people of all ages that have produced positive results. Epilogue
1. Dr. Prizant emphasizes the need for autistic children, adults, and their families to find and connect with communities of support. As a parent, autistic person, or service provider, what communities do you feel either are—or could be—the best fit for your emotional and practical needs? Have you faced barriers in finding and connecting with such communities? Have you experienced successes in doing so, and if so, what have been the benefits?
2. So many parents, autistic people, and service providers have shared how reading Uniquely Human
has changed their understandings, perspectives, and practices. Many say it’s had a profound effect on their lives. If you feel that way, share two or three things you have learned from it that have proved transformative.
Frequently Asked Questions
1. In addition to the questions and responses in this section, develop six additional frequently asked questions and come up with reasonable and research-supported responses to these questions. Do this by breaking down into discussion groups, with each group developing two to three questions and appropriate responses.
Thank you for delving more deeply, for sharing your experiences, and for becoming a part of the Uniquely Human