Ready to Launch? Supporting Adults with ASD or DD

1. Ready to Launch? Supporting Adults with ASD or DD Susan Hepburn JFK Partners University of Colorado School of Medicine February 2013

2. Acknowledgments • CAN-DO/CASCADE Project (Statewide Implementation Grant, with the mission of putting the recommendations of the Colorado Autism Commission Strategic Plan into action). See www.jfkpartners.org and www.autismcolorado.org • Roaring Fork Autism Network • Aspen Extreme Sports Camp • Autism Speaks Global Autism Public Health Initiative

3. Overview • What are some ways of thinking about adult development that are relevant for people with ASD or DD? • How do these theories give us ideas about how to support young adults with ASD/DD?

4. Development is a lifelong concept

5. Several different “stage theories” of development • Emphasize different ideas of what’s important as we grow older Jung Kohlberg Kegan Laske Freud Erikson Gould Peck Piaget

6. Several different “stage theories” of development • Share common ideas that different periods of our lives: • Pose unique challenges in our process of “becoming a person” (Carl Rogers, 1970) • Bring different societal expectations • Provide an opportunity for growth that is developmentally feasible

7. Several different “stage theories” of development • Share common ideas about development: • Moves from simple to complex • Stages naturally occur in sequence • If out of sequence  increases dissonance or a sense of being out of step with society

8. Stage theories of development must…. Consider culture

9. Stage theories of development must… Consider individual differences in people

10. Stage theories of development must: Be thought of as elastic, not as rigid

11. Stage theories can be useful to consider as we develop interventions for young adults with ASD or DD.

12. BUT you must remember that a person may be functioning at a different stage than their age suggests.

13. An important distinction: • A person with a developmental disability that is not an ASD usually presents with skills that are fairly evenly (consistently) delayed. (i.e., a 20-year old person who is functioning more like an 8 year old across the board) • A person with an ASD usually presents with scattered skills – some are within developmental expectations for his age, some are behind, and some may even be advanced.

14. In light of this…. • Stage theories may be more directly useful for thinking about a person with DD • Stage theories need to be adapted – or worked with – more intently when thinking about a person with ASD. • Regardless, understanding about human development in adolescence and adulthood can be very helpful in planning interventions and supports.

15. We’ll examine 2 stage theories of adult development • Erikson – psychosocial, 8 stages of man • Kegan – constructivist/developmental

16. Erikson’s 8 Stages of Man Erikson, E. (1984).

17. 8 STAGES OF MAN • Birth to 18 mos: Trust vs. mistrust • 18 mos to 3 years: Autonomy vs. Shame • 3 to 5 years: Initiative vs. Guilt • 6 to 12 years: Industry vs. Inferiority • 12 to 18 years: Identity vs. Role Confusion • 18 to 35 years: Intimacy/Solidarity vs. Isolation • 35 to 65 years: Generativity vs. Stagnation • 65 to Death: Integrity vs. Despair For good summary of Erikson’s theory, see: http://www.support4change.com/index.php?option=com_content&view=article&id=47&Itemid=108

18. Each stage has associated strengths, tasks, and challenges for resolving developmental tension.

19. Adolescence (12 to 18 years) Strengths: Loyalty, Desire for truth, intensity Tasks: 1. Discover who we are – separate from our families in particular 2. Develop a philosophy of life and/or a cause or focus that helps define our identity Challenges: 1. We rely more on peers and have to navigate complex and unpredictable social conflicts, often without allowing adults to help. 2. We may substitute ideals for reality

20. Implications if person has ASD or DD At this stage, development is more about what we do than what is done to us. Therefore, we need to help teens see a connection between what they do and what happens  develop accountability. • For new or complex tasks • Link effort to access to privileges • For mastered but low preference tasks: • Link initiation and completion to access to privileges

21. Implications if person has ASD or DD • Encourage pursuit of special interests and actively teach balancing interests with responsibilities • Promote friendships/affiliation through shared interests • Find ways to encourage peers to be steady companions • Try to pair teen with young adult caregivers and encourage a sense of connectedness to these “quasi-peers” • Help person with identity definition, by concretely and intentionally narrating the strengths you see in the teen • Be very vigilant about not talking about the person in front of them!!! Be careful about the words you use to describe him, even if he isn’t in the room.

22. Young Adulthood (18 to 35 years) Strengths: Affiliation, Capacity to love Tasks: 1. Seek companion(s) 2. Seek a community/find a sense of belonging/ explore, explore, explore!! Challenge: If not successful, isolation may occur; sometimes distance from others leads to a defensive posture of superiority. This can make it increasingly difficult to pursue intimacy.

23. Implications if person has ASD or DD • See list for teens • Help find an appropriate community or place/group person can feel a part of • Interest-driven • Service-driven • Explicitly clarify the person’s role in the community and review ground rules and expectations as appropriate • Emphasize commitment and engage the person in determining how long they will commit to this before abandoning it

24. Implications if person has ASD or DD • Actively educate other members of the community about the person’s strengths, needs, learning style, social style, idiosyncratic behaviors • Identify a Point Person and maintain ongoing communication to gain a 3rd-person account of how its going • Actively engage the person with ASD/DD in managing/repairing any social difficulties that emerge

25. Middle Adulthood (35 to 65 years) Strengths: Productivity, Care, Persistence Tasks: 1. Focus on work and family 2. Manage “being in charge” Challenges: To create stability in work and home; to contribute to the “greater good”; to adapt to major life changes with grace

26. Implications if person has ASD or DD • Build a sense of family membership • In family of origin or • In a created family (caregivers + housemates) • Develop routines/rituals for family to do predictably • Develop clear roles/responsibilities for maintaining family life • Help the person maintain contact with important people who have moved on • Social media • Letters or telephone • Photo books or scrapbooks to spark memories

27. Kegan’s Developmental-Constructivist Theory Kegan (1981).

28. Kegan’s Social-Emotional Stages (Kegan, 1982) Sense of Self defined by: • Stage 1: Own needs/wishes; self and others = 2 separate worlds • Stage 2: Socially determined (i.e., depends on what others think of us – or what we think others think of us) • Stage 3: Value-driven (i.e., we each develop a personal philosophy and define ourselves in relation to what we individually view as important) • Stage 4: Unbounded (i.e., a sort of nirvana-like state, rarely achieved by anyone, but the “ideal”; totally accepting of self and others)

29. Applying Kegan’s theory to adults with ASD/DD: • Difficulty with social cognition (i.e., thinking about the way others think) can keep a person “stuck” in the 1st stage • This can be very confusing to people around the adult, as his/her knowledge, memory, logic may be far beyond the person’s emotional IQ • Furthermore, to the adult with ASD (stuck in stage 1) – anybody else’s concerns about their behavior changing may not be understood or may even feel unfair, unjust, unreasonable. Therefore…

30. Interventions that do not match the person’s sense of self are not likely to be effective, but may actually be met with increased frustration & resistance. THEREFORE: YOU HAVE TO MEET THE PERSON WHERE HE OR SHE IS SOCIALLY-EMOTIONALLY ….SOMETIMES THIS MATTERS MORE THAN WHERE THE PERSON IS COGNITIVELY

31. FOR EXAMPLE: DAVID’S STORY

32. DAVID • 45-year old man with ASD • Very bright • Supports himself through independent investing, has turned a trust fund into substantial amount of money: VERY SUCCESSFUL • His brother and therapist tried to engage him in investing other people’s money without coaching: NOT SUCCESSFUL

33. Even though David is an expert investor, he needs coaching to Speak respectfully to less knowledable investors Listen to the priorities of others and tolerate a different view point Follow social conventions of communication – e.g. not calling a client at 3 am

34. David & his brother decided • David’s expertise actually made it harder for him to be flexible with others • Working part-time in a retail situation was a better place to teach him socially appropriate work behaviors – not viewing himself as an “expert” made it easier (perhaps) to accept coaching in this context

35. Davids’ story reminds me of Jacques’ “Theory of Work” • Def’n of work: pursuit of specific goals within a particular time frame • 2 types of work capability: • Applied – the abilities the person already has to engage in work; no coaching necessary • Potential – resources individual may be able to draw from in the future • Coaching or mentoring is necessary to tap potential From Jacques, E. (1989).

36. Applying Jacques’ Theory to Adults with ASD/DD • Coaching may be necessary to facilitate both Applied and Potential abilities • Many adults with ASD/DD have the job “content” skills down but need coaching to execute the job in the right way, at the right time and within the alloted time period. Coaching is usually on Process more than Skill in ASD

37. Another example: LISA’S STORY

38. LISA • 26-years old, graduate of transition program through public schools, lives at home • ASD, with IQ in the borderline range, better language than nonverbal skills • Tends to think in black-and-white terms • Has a hard time picking up when someone is lying or telling the truth, has been victimized by others – a vulnerable person

39. Lisa (cont.) • Very interested in law enforcement • Likes the uniforms, rules, authority • Spends a lot of time listening to police radio and making scrapbooks of crime-related stuff • Her career goal: be a police officer – interest so intense that she has rejected any opportunities outside of this field for several years

40. Lisa (cont.) • Parents are very concerned – they recognize she doesn’t have the social problem-solving ability to safely pursue a career in law enforcement BUT She rejects any other options with intense rigidity, resulting in tantrums that one might see more often in a much younger person WHAT TO DO?

41. Meeting Lisa Halfway… • Dad secured a vocational placement a few hours a week transferring security videotapes to hard drives for a security agency • She wears a uniform and identifies as a “Security Professional” (as opposed to a “security guard”) • Family pays a former parapro from the school to provide job coaching

42. What does this mean for supporting adults with ASD/DD in our communities?

43. Our Reality • Adult Services are not easy to access for many families in many communities • Many leaders in the field are calling for increased allocation of resources for adult services. • Part of the priorities listed in the Interagency Autism Coordinating Committee (IACC) reports to congress over past several years • Numbers of adults that will require services are estimated to be unprecedented and has been described as a public health crisis (Gerhardt, 2011)

44. What can we do? • Form collaboratives/microboards/communities of service outside of the formal system • Models: working farms, entrepreneurial projects, apprenticeships • Engage providers from mental health, DD services, public schools, public health, medical care, alternative medicine in joint efforts – decrease diagnosis-specific silos • Alert the media to success stories – help the public see that people with different learning styles can contribute significantly to communities

45. What can we do? (cont.) • Train for specialist positions, not generalist jobs – sometimes beginning in middle school • Explore different vocations – like any other 20-something, see if you can find ways to engage the young person in short-term internships to help figure out the best fit • Seek formal assessment of vocational interests and supports (e.g., Supports Intensity Scale)

46. What can we do? (cont.) • Collaborate/volunteer/assist community colleges, art schools, technical schools to develop accessible opportunities for adult education and social inclusion • If the person is college-bound: • Consider schools with existing support programs specifically for students with ASD/DD -- to my knowledge, these currently include: • Colorado State University • Virginia Tech • University of Alabama • CLE program (College Living Experience) – available at UCD and other universities, but may be expensive and somewhat restrictive in entry criteria

47. Resources for College Programs for Students with ASD http://www.collegeautismspectrum.com/collegeprograms.html

48. Transition to Independent Living Program at Taft College-California Post-secondaryprogramfocused on independent living skills University of Alabama Autism Spectrum Disorders College Transition and Support Program (UA-ACTS) Comprehensive academic and behavioralsupports $3000 per semester University of Alabama College Transition and Support Program (UA-ACTS) Comprehensive academic and behavioralsupports $3000 per semester

49. University of Arkansas Autism Support Program Comprehensive services to ourstudents in the areas of academics, social skills, and transitioning to independentadultroles. Contact Dr. Aleza Greene at 479-595-6071, asgreene@uark.edu. $5000 per semester University of Connecticut SEAD Program (Strategic Education for students with ASD) Comprehensive academic and behavioralsupports $3000 per semester University of Minnesota Certificate Program in AutismSpectrumDisorders 14-credit programoffersspecialized training in methods of assessment, intervention, and treatment evaluation. Admissionis open to graduate and undergraduatestudents.

50. http://www.collegeautismspectrum.com/collegeprograms.html Providing college-level support and training for students, parents, & professionals involved with the autism spectrum community Autism Collaborative Center (Eastern Michigan University) Individualized support services $4,400 - $8,500 per semester Bridges to Adelphi Program (Adelphi University) Comprehensive academic, social, and vocationalsupportservices to students with A.S., or other non-verballearningdisorders $2500 per semesteraboveothertuition, fees and charges College Program for Students with Asperger's Syndrome at Marshall University- West VA Autism Training Center Positive behavior and academicsupport $3200 per semester Supported Education Services (part of ODS)-Boston University Individualizedassistance with skills and support No charge for BU students University of Tennessee Chattanooga Contactis Michelle Rigler for the MOSAIC program. Western Kentucky University Studentsupport and mentoring $2000 per semester Western New England University Mentoringprogram in conjunction with ABA doctoralprogram and the psychologydepartment. ContactBonnieAlpertat 413-782-1257. Community College of Baltimore County- Essex Campus Individualstudentsupport Fairleigh Dickinson University: COMPASS Program College-basedsupport for students with Aspergers; first twoyears of college $3000 per semester Mercyhurst Program of support and mentoring. ContactisDianneRogers. Midwestern State University (Wichita Texas) Residential Program and mentoringsupport Rochester Institute of Technology Providesindividualizedsupport to students on the Spectrum Rutgers University Full supportservices $2500 per semester