Families Coping with Autism: Trials and Triumphs

1. The Watson Institute Julie Knapp, PhD Lindsy Yarger, MA Joyce Giovannelli, PhD Nicole Jarock, M.A.T. Families Coping with Autism: Trials and Triumphs

2. Agenda • Trials on the Family • Chronic Stress • Childrearing Issues • Demands on Parents’ Time • Marital Intimacy • Marital Relationships • Siblings

3. Agenda • Stages of Grief and Loss Elizabeth Kubler Ross literature • The Typology Model of Family Adjustment and Adaptation (Coping Mechanisms) • Family Recommendations for Coping with Stress • Positive Aspects of having a Child with ASD • Personal Stories of How Autism affected One Parent’s Life

4. Workshop Goals • To normalize the experience of living with chronic stress • To normalize the feelings of guilt, anger, and depression • Learn to celebrate the accomplishments of a child with ASD • To identify adaptation and adjustment strategies to conquer the stress associated with raising a child with ASD

5. Families Raising a Childwith Autism • CDC Study (2007): • 1/150 children with ASD • 1/94 Males with ASD • 1 child diagnosed every 20 minutes

6. Increase in Diagnosisin PA

7. Research Study /Trials on the Family • Purpose - better understand the relationship of autism and family stress • Participants: • Parents raising a child with ASD, received services at The Watson Institute • Parents of typical developing children, attended two local daycare centers in Pittsburgh, PA • Marital Satisfaction Inventory, Revised • Family Assessment Measure, Version Three

8. Study Participants • 127 parents participated in study • 37 families raising a child with ASD • 28 families raising typical developing children • Ages ranged from 28 to 53 years • Ages of the children ranged from 3-12 years

9. Results of Study • Parents of children with ASD reported higher levels of stress within a marriage • Parents of children with ASD reported greater conflict over child rearing. • Disagreements with spouse over treatment, handling behaviors, school interventions, etc. • Parents of children with ASD scored significantly higher on the Dissatisfaction with Children subscale, indicating greater dissatisfaction with their children.

10. Results of Study • Parents raising a child with ASD reported dissatisfaction regarding lack of shared leisure activities as a family • Parents of children with ASD reported higher sexual dissatisfaction

11. Results of Study • Overall, parents raising a child with ASD reported greater marital dissatisfaction • Relying on one’s partner for support when that partner is also in crisis and needing support can place a “enormous burden on the marriage”

12. Think there is something “different” about your child. Family members and friends reassure you that you should wait, your child will catch up Sense of being misunderstood Sense that others do not believe you Loss of self-confidence as a parent Chronic Losses

13. A professional diagnosing your child with autism Child begins to receive wraparound services, multiple treatment Confirmation / Learning your child is not developing typically Privacy, Personal time, Time for marriage, Time for other children Chronic Losses

14. Family, friends, neighbors withdrawal – may avoid their children interacting with you Arguments, breakdown in marriage Loss of support system Loss of sense of team within marriage Chronic Losses

15. Autism and Siblings

16. Why Professionals Care about Sibling Relationships • Cognitive skills • Affective skills • Social skills • Self-Image

17. The Sibling Relationship with ASD “It is important to recognize the difference between normal frustration of childhood and the special impact of having a sibling with autism.” (Harris 13)

18. Reported Negative Outcomes for Siblings of Children with ASD • Anger • Loneliness • Feelings of guilt or embarrassment • Hassles with their siblings’ behavior • Externalizing and internalizing behavior problems • Depression • Shift in family roles • Poor social reciprocity between siblings

19. Factors Contributing Outcomes for Siblings • Parental stress • Marital satisfaction • Parental expectations

20. Stages of Grief and Loss

21. Grief and Loss (Kubler-Ross) • Denial • Anger • Bargaining • Depression • Acceptance

22. Shock Numbness Confused Dazed Bewildered Detached from reality Belief child is misdiagnosed Gives parents time to find their inner strength to deal with the painful feelings Grief and Loss / Denial

23. Grief and Loss / Anger • “Why did this happen to my family?” • Resent parents of typical developing children • Anger toward self, partner, God, professionals

24. Grief and Loss / Bargaining • Seek multiple opinions • “Shop around” for other or no diagnosis

25. Grief and Loss / Depression • As many as one third of the mothers raising a child with autism exhibit depressive symptoms • Difficulty connecting with child • May not perform daily tasks • Disturbed sleep • Chronic tiredness, fatigue • Difficulty making daily decisions • Physical symptoms

26. Grief and Loss / Acceptance “We mourn the loss of the child we anticipated who suddenly vanished from our lives, the child who slipped through our hands before we had a chance to know him or her, the one who quietly disappeared through the crowd, never to be found. This mourning process, which I imagine to be similar t to experiencing a miscarriage or premature death of a child, is a necessary step before we can move on and begin to accept our disabled children into our lives.” (Carter, 2004, p. 182)

27. Family Adjustment and Adaptation

28. Family Adjustment and Adaptation • Impact on the family system • Family patterns and interactions • Family coping mechanisms • Adjusting and adapting

29. The Typology Model of Family Adjustment and Adaptation • TMFAA: - Strengths - Resources - Coping mechanisms • Role of these attributes

30. TMFAA • TMFAA model is comprised of two phases: 1.) Adjustment Phase: typically a short-term response that the family experiences. 2.) Adaptation Phase: Long term response of the family

31. Adjustment Phase • Severity of the Stressor • Family’s Vulnerabilities • Family’s Type • Resistant Resources • Appraisal of the Event • Family’s Problem Solving Capabilities

32. Interaction of these Variables • The way in which these factors interact will determine how well the family adjusts to the crisis situation and if or when the family members will move onto the next phase of the TMFAA • In the adjustment phase, the dimensions and levels of the factors play a role in determining the family’s adjustment to the crisis situation

33. Adaptation Phase • Number of demands placed on the family system • Typology of the Family • Strengths of the Family • Situational Appraisal • Family Schema • Social Support • Problem Solving and Coping Skills

34. Ineffective Coping Skills • Avoidance • Isolation • Withdrawal • Self-Criticism • Blaming self or others • Wishful Thinking • Resignation

35. Positive Coping Skills • Exercise and nutrition • Psycho-Educational - Seek information on the perceived problem • Plan time for relaxation as a family • Rely on social supports

36. Positive Coping Skills • Finding humor in a given situation • Parents need to schedule time to be together without the children! • Create a plan for childrearing (share responsibilities, share supervision) • Psychotherapy • Support Groups • Respite Care

37. Positive Coping Mechanismsfor Siblings • Create a safe haven • Allow time for sibling to nurture hobbies and skills • Spend 1:1 time with typical sibling • Provide age-appropriate information on autism

38. Strengths in Children with Autism • Gross motor skills • Nonverbal intelligence • Rote memory • Ability to make associations quickly, • Ability to follow routines • Appreciation for order and routine • Specialized talents including music, calculating numbers, and drawing

39. Positive Aspects of Parenting a child with an Autism Spectrum Disorder Welcome to Holland!

40. Beyond Stages of Grief • Kubler-Ross discussed five stages that characterize people’s reactions to loss and grief. • Research (Poyadue, 1993) suggests that there is a sixth stage for parents of children with disabilities: the appreciation or “all right” stage.

41. How to reach the “all right” stage • 1) The need to form new identities • 2) Attempts to derive meaning from the situation • 3) The development of a sense of personal control

42. What are the Positives? • Learning new coping skills and resources (Schafer & Coleman (1992)

43. What are the Positives? • Perception of growth related to stress (Nolen-Hoeksema & Larson 1999)

44. What are the Positives? Gupta & Singhal (2004) have listed 14 positives to raising a child with a disability: 1. Pleasure/satisfaction in providing care for the child 2. Child as a source of joy/happiness

45. What are the Positives? 3. Sense of accomplishment in having done one’s best for the child 4. Sharing love with the child 5. Child providing a challenge or opportunity to learn and develop 6. Strengthened family and/or marriage 7. Giving a increased sense of purpose in life

46. What are the Positives? 8.Development of new skills, abilities, or new career opportunities 9. Becoming a better person (more compassionate, less selfish, more tolerant) 10. Increased personal strength or confidence 11. Expanded social/community networks

47. What are the Positives? 12. Increased Spirituality 13. Changed perspective on life (e.g., clarified what is important in life, more aware of the future) 14. Making the most of each day and living life at a slower pace

48. New Roles Many parents find meaning through acquiring new roles such: • parent group leaders • conference speakers • authors • members of advisory councils

49. The Power of Parent Support Groups • Literature suggests that one primary method of reaching the appreciation or “all right” stage is to gain support from parent groups (Gupta & Singhal, 1994).

50. Parent / Personal Stories