ASD and Community Living: Study Results of 15 Families and the Young Adults Personal Growth Outcomes

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ASD andCommunity Living Study Results of 15
Families and the Young Adults Personal Growth
Outcomes

• By
• Jackie Marquette
• Jackie_at_independencebound.com
• www.independencebound.com
• _at_Jackie Marquette, 2006

Breath of God by Trent Altman
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This presentation

• Current situations for adolescents and young
• adults with ASD.
• Quality of life issues.
• Study results of YAs with ASD who are living
  independently (with supports).
• Policy Considerations.

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• Current situations for
• adolescents and young
• adults with ASD and
• DD.

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• 1. Independent living unanimously recognized
  best practice, live, family years adult life
  (Blue-Banning Turnbull, 2002).
• 2. Living separate from family as an adult,
  parents see as impossible for the child with
  autism (Schuster, Timmons, Moloney, 2003).
• 3. Separation for their child to live
  independently is a great concern for parents of
  disabled children (Blue-Banning Turnbull, 2002).

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• 4. Dependent upon their families to act as a
  guide to access employment, services and other
  resources (Turnbull, Blue-Banning, Anderson,
  Turnbull, Seaton, Dinas, 1996).
• 5. The common outcome for many individuals with
  developmental disabilities including autism
  becomes one of isolation and confinement because
  of lack of resources (Sullivan, 2001).
• 6. Individuals with DD and families often
  experience emotional loss during the transition
  from student to adulthood (Ferguson, Ferguson,
  and Jones (1988).

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• Quality of life issues.

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Quality of Life Issues

• 1. Having the freedom to make choices and have
  control over our lives (Stancliffe Parmenter,
  1999).
• 2. To be part of the community is to be a family
  member, neighbor, schoolmate, friend, church
  member, shopper, coworker, and significant other
  (Kosciulek, 1999).
• 3. Right to be known as an individual or a unique
  person. It does not, however, carry the burden of
  being labeled a ward of the state, a client of an
  agency, or the recipient of anothers altruistic
  acts (Taylor, Bogdan, Racino, 1991, pp.
  253-258).

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Study Title

• AUTISM AND POST HIGH SCHOOL
• TRANSITION TO COMMUNITY
• ASSISTED LIVING
• PARENTAL
• PERCEPTIONS

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Study Participants

• Parents of Adult children with ASD who
• established community assisted
• living arrangements.
• Parents young adults cognitively ranged
• From Aspergers to IQs in 20s.

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Study Outcomes of 15 Individuals with ASD

• Brief Results
• Young adults exhibited leaps of personal growth
  after a difficult experience and/or trauma.
• Supports provided to individuals led to their
  higher functioning capability in various domains.
• Gifts and strengths were identified and became a
  catalyst to the individuals integrative
  participation within the community.

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Study Outcomes of 15 Individuals with ASD, cont.

• Strong parental beliefs in the value of their
  son/daughters strengths and capability to pursue
  a place to know acceptance and belong.
• Families active participation in creating
  supports that were beyond governmental supports.
• Families initiated certain risks that altered
  family structure, income, and/or routines.

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Some Challenges Faced

• Severe aggression
• Bullied and ridiculed (past)
• Health issues and severe mental retardation
• A Parents death

• Parents divorced
• Parental depression and drug use
• Depression isolation
• Severe mental retardation

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Encourage Youth with ASD to Explore Strengths
and Gifts?

• Individuals can create with full emotion
• in music, art, or other venues that
• they cannot show in relationships.

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• Doing what you
• love to do and
• doing it with your
• spirit and your
• heart--thats as
• good as it gets.
• Kris Khristopherson

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A persons gift

• is for other people.
• is valuable and fulfills a purpose
• offers someone else comfort
• offers a service
• relieves someone else of a task
• reveals the best in the person who is giving the
  gift.

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Individuals Gifts and Strengths Revealed in This
Study

• Artists
• Caregiver/
• Rescuer
• Uses maps (employ, leisure)
• Strong self care skills

• Concert pianist
• Superb cleaner and enjoys it
• Artist, historian
• Mail deliverer with County Clerk

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• Has 2 jobs, retail store and at UPS
• Works at a preschool
• Teaches workshop with speech therapist on
  Facilitative Communication
• Pizza delivery
• Strong in sports statistics, works in media dept
  at a University.

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Living Independentlywith Autism Challenges

• George
• Melissa
• Sam
• Bill
• Patrick
• Kirk
• Frank

• Sarah
• Phillip
• Richard
• James
• Mary
• Tom
• Randy
• Fred

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Gifts, Talents, and Personal Development for
Individuals with ASD
The relationship between traditional approaches,
current life outcomes for individuals with ASD,
higher capability with noticeable leaps in growth
as further modified by personal expression
through gifts.
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Two things to know

• recognize ALL individuals no matter how
  significant the disability have something to
  give.
• the act of exploring, identifying, and using a
  gift is for high functioning AND low functioning
  individuals. Toss these terms aside and go ahead
  and explore gifts, interests, and talents
  regardless of disability label or level.

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• Policy Considerations

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• 1) Design national and state policy that mandates
  community living supports for young adults who
  are on various levels of Autism Spectrum
  Disorders.
• 2) Provide support during events and crisis that
  would facilitate keeping the family together.

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• 3) Coordinate policy that involves collaboration
  between family and professionals to resolve
  barriers and facilitate integrated social
  connections and associations, employment, self
  employment, university and college access with
  supports, and living in independent or community
  assisted living.
• 4) State departments in education, councils, and
  commissions should write policy that supports and
  directly impacts the family in the role of
  handling emotional issues and taking action steps
  that promote successful transitions for the
  individual.

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• 4) School districts should follow-up with
  students who have graduated and include community
  living in the evaluation as well as employment.
• 5) State policy should incorporate vouchers for
  young adults to use and purchase services that
  are uniquely appropriate for them to live in the
  community.

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• 6) Universities should offer courses to
  professionals soon entering disability or
  education venues.
• To recognize the benefits in providing
  supports that increases student capability in
  various domains of living.
• To recognize that the family is the
  foundation of support for the individual with
  ASD. Supporting families through the transition
  process, benefits the young adult.
• 7) Local neighborhoods, schools, and community
  organizations and associations should sponsor the
  development of programs and activities that
  increase peer connections, tutors, and or
  community coaches for students and young adults
  with ASD.

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• 8) Councils and commissions, universitites should
  establish round tables of participants who have
  ASD and professionals from other states and even
  countries to share ideas of inclusive
  environments that focus on quality of life.
• 9) School and vocational rehabilitation services
  should offer and promote student and young adult
  supports to create options to apply strengths and
  gifts in employment or as an owner of a business.
  
• 10) State education policy should develop
  programs that emphasize and measure gains in
  student self awareness about identifying and
  using skills, gifts, and talents.

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• Advice families give to
• others about making the
• journey to a life of purpose
• and independence for their
• young adult .

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Meet Stephen
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Meghan Sings
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Bernadette
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• THE END