ready to launch? supporting adults with asd or dd
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Ready to Launch? Supporting Adults with ASD or DD. Susan Hepburn JFK Partners University of Colorado School of Medicine February 2013. Acknowledgments. - PowerPoint PPT PresentationTRANSCRIPT
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Ready to Launch? Supporting Adults with ASD or DDSusan Hepburn JFK PartnersUniversity of Colorado School of MedicineFebruary 2013
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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
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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?
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Development is a lifelong concept
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Several different “stage theories” of development Emphasize different ideas of what’s
important as we grow older
Gould Erikson
Kohlberg
Freud
Jung
Peck
Laske
Piaget
Kegan
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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
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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
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Stage theories of development must….Consider culture
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Stage theories of development must…Consider individual differences in people
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Stage theories of development must:Be thought of as elastic, not as rigid
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Stage theories can be useful to consider as we develop interventions for young adults with ASD or DD.
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BUT you must remember that a person may be functioning at a different stage than their age suggests.
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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.
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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.
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We’ll examine 2 stage theories of adult development Erikson – psychosocial, 8 stages of man
Kegan – constructivist/developmental
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Erikson’s 8 Stages of ManErikson, E. (1984).
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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
8 STAGES OF MAN
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Each stage has associated strengths, tasks, and challenges for resolving developmental tension.
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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
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Implications if person has ASD or DDAt 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 tasksLink effort to access to privileges
For mastered but low preference tasks:Link initiation and completion to access to
privileges
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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.
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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.
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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
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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
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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
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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
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Kegan’s Developmental-Constructivist TheoryKegan (1981).
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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)
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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…
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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
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FOR EXAMPLE:DAVID’S STORY
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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
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Even though David is an expert investor, he needs coaching toSpeak 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
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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
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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).
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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
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Another example:LISA’S STORY
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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
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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
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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?
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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
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What does this mean for supporting adults with ASD/DD in our communities?
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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)
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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
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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)
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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
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Resources for College Programs for Students with ASDhttp://www.collegeautismspectrum.com/collegeprograms.html
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Transition to Independent Living Program at Taft College-CaliforniaPost-secondary program focused on independent living skills
University of Alabama Autism Spectrum Disorders College Transition and Support Program (UA-ACTS)Comprehensive academic and behavioral supports$3000 per semester
University of Alabama College Transition and Support Program (UA-ACTS)Comprehensive academic and behavioral supports$3000 per semester
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University of Arkansas Autism Support ProgramComprehensive services to our students in the areas of academics, social skills, and transitioning to independent adult roles.Contact Dr. Aleza Greene at 479-595-6071, [email protected].$5000 per semester
University of Connecticut SEAD Program (Strategic Education for students with ASD)Comprehensive academic and behavioral supports$3000 per semester
University of MinnesotaCertificate Program in Autism Spectrum Disorders14-credit program offers specialized training in methods of assessment, intervention, and treatment evaluation. Admission is open to graduate and undergraduate students.
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Community College of Baltimore County- Essex CampusIndividual student support
Fairleigh Dickinson University: COMPASS ProgramCollege-based support for students with Aspergers; first two years of college $3000 per semester
MercyhurstProgram of support and mentoring.Contact is Dianne Rogers.
Midwestern State University (Wichita Texas)Residential Program and mentoring support
Rochester Institute of Technology Provides individualized support to students on the Spectrum
Rutgers University Full support services$2500 per semester
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Resources (cont.)
Autism speaks: www. Autismspeaks.org. Check out their Transitions Tool Kit!
Autism Society of America: www. Asa.org
Oopswrongplanet.org (website maintained by persons with asd, covers a variety of adult issues)
TASH: www.tash.org (serves individuals with significant developmental disabilities with a new priority to build high quality adult services
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COMING SOON:JFK WILL BE SPONSORING AN ADULT SERVICES CONFERENCE IN OCTOBER OF 2013….STAY-TUNED….
WWW.JFKPARTNERS.ORG
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“Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has. “
- Margaret Mead
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“We are the ones we've been waiting for.” ― Colin Beavan, No Impact Man
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Thank you for your time and attention.