Ready to
Launch?
Supporting Adults
with ASD or DD
Susan Hepburn
JFK Partners
University of Colorado
School of Medicine
February 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
Several different “stage
theories” of development
 Emphasize
different ideas of what’s
important as we grow older
Jung
Kohlberg
Freud
Peck
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 Man
Erikson, E. (1984).
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_c
ontent&view=article&id=47&Itemid=108
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 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
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 “quasipeers”

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 DevelopmentalConstructivist Theory
Kegan (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
 Very
old man with ASD
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 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
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
 Has
to think in black-and-white terms
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 crimerelated 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?
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 20something, 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
ASD
http://www.collegeautismspectrum.com/c
ollegeprograms.html
Transition to Independent Living Program at Taft CollegeCalifornia
Post-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 Program
Comprehensive 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 Minnesota
Certificate Program in Autism Spectrum Disorders
14-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 Campus
Individual student support
Fairleigh Dickinson University: COMPASS Program
College-based support for students with Aspergers; first two years of college
$3000 per semester
Mercyhurst
Program 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.