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

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

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

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

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

Increase in Diagnosis in PA

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

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

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

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

Results of Study Overall, parents raising a child with ASD reported greater marital dissatisfaction 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” 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”

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

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

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

Autism Autism and Siblings and Siblings

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

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)

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

Factors Contributing Outcomes for Siblings Parental stress Parental stress Marital satisfaction Marital satisfaction Parental expectations Parental expectations

Stages of Grief and Loss

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

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

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

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

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

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)

Family Adjustment and Adaptation Family Adjustment and Adaptation

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

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

TMFAA TMFAA model is comprised of two phases: 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

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

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 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 In the adjustment phase, the dimensions and levels of the factors play a role in determining the family’s adjustment to the crisis situation

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

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

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

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

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

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

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

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

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

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

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

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

What are the Positives? 3. Sense of accomplishment in having done one’s best for the child 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

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

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

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

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

Parent / Personal Stories

Song Written and Sung by a Sibling of Child with ASD Madison Georgi, Age 14, From Pittsburgh Madison Georgi, Age 14, From Pittsburgh “Take my Hand” “Take my Hand” To download this song, To download this song, $ % of proceeds go toward helping families of children with ASD $ % of proceeds go toward helping families of children with ASD