Ready to Launch? Supporting Adults with ASD or DDSusan Hepburn JFK PartnersUniversity of Colorado School of MedicineFebruary 2013

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

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?

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

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

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

Stage theories of development must….Consider culture

Stage theories of development must…Consider individual differences in people

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

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

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

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.

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.

We’ll examine 2 stage theories of adult development Erikson – psychosocial, 8 stages of man

Kegan – constructivist/developmental

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

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

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

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

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

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.

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.

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

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

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

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

Kegan’s Developmental-Constructivist TheoryKegan (1981).

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)

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…

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

FOR EXAMPLE:DAVID’S STORY

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

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

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

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).

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

Another example:LISA’S STORY

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

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

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?

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

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)

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

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)

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

Resources for College Programs for Students with ASDhttp://www.collegeautismspectrum.com/collegeprograms.html

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

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, asgreene@uark.edu.$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.

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

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

COMING SOON:JFK WILL BE SPONSORING AN ADULT SERVICES CONFERENCE IN OCTOBER OF 2013….STAY-TUNED….

WWW.JFKPARTNERS.ORG

“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

“We are the ones we've been waiting for.” ― Colin Beavan, No Impact Man

Thank you for your time and attention.