Monday, May 16, 2011

Breakout Session C: Raising an Individual with Autism: Family Impact: Who? What ? Where? When and How? across the lifespan

Mary Baker-Ericzen, PhD
-There should be a coordination of care between educational, medical, developmental and mental health, etc.  However, what we are seeing is that it is a funnel system where all of these different services funnel to one place to coordinate the care, and that is by the family.
This leads to an extra burden on the family and the need to have extra skill sets (i.e., advacate, case manager, providing services)

-In recent study, 60-80% of parents of children with ASD have clinically elevated levels of stress. ( Most say that navigating the system is more stressful than the child’s behaviors.)
-In same study, 30-60% of parents experience clinical levels of depression.

-Adaptation is more than just adjustment.  It is acceptance, integration, feeling of knowledge, empowerment and support.
- The key to coping and adaptation is developing a system of support.

Conditioning Variables to Stress
1.  Empowerment/advocacy
2.  Social Support
3.  Coping/Problem Solving abilities
4.  Competence
5.  Information and knowledge

Transition Periods for ASD families
Bonnie Kraemer, PhD, BCBA-D
-Presentation based on research of period of transition for ASD families.

After exiting school (either graduating or aging out)
-living at home
-group home
-apartment or dorm

-post secondary ed
-work with support
-sheltered work (i.e., adult daycare)
-home with no work

In parents of ASD individuals making the transition, there is high stress about vocational, living and and social.  It impacts well being and affects the rest of the family.  60% of families where kids have exited school are reporting extreme impact.

They are hoping to develop a program that will have direct intervention for parents at 90 min a week. 

Family Life with Autism
Stephen Shore, Ed.D (an adult living with ASD)
-It is important to develop solid relationship before start teaching a child with ASD.  Be interactive with the child.  Get into their world.
-Notice and support special interests and focus.  Use these interests of such intensity as motivation.

For the Family:
Siblings: -Spend time with each child.  Be careful of "parentifying" siblings.  Be fair to each family member.  Fairness is NOT treating everyone the same.  Fairness is providing for each person's need (i.e., not everyone in the room needs CPR to be fair).

Child with autism as a catalyst
-Strong relationships bond tighter.
-Weak relationships torn asunder.

The Grieving Process...for the child you dreamed of
1.  Denial.  Not me...
2.  Anger.  Why me?  Why my child.  It is so unfair.
3.  Bargaining.  (i.e., Researching way too much on google trying to find that cure)
4.  Depression.
5.  Acceptance - Does not mean giving up, but rather finding balance in the family.  Appreciating, supporting and welcoming the child with ASD's contributions to the world.

- If you are productive and fulfilled with your life, you are probably successful.

- Don't focus on where they should be rather than on how to help them be successful.

Books by Stephen Shore:

John Elder Robinson (another adult with ASD)
-Encourage to offer self  to various autism research programs.
-One person can make a huge difference.

Books by John Elder Robinson

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