Adapting to Autism: Building Healthy Families

1. Adapting to Autism:Building Healthy Families Deborah Gill, MA LMFTA

2. Learning Objectives • Attendees will learn about the common stressors faced by families raising a child with Autism Spectrum Disorder. • To understand the concept of Ambiguous Grief as it relates to parents of children with Autism. • To discuss the impact on Siblings of children with Autism. • To learn the characteristics of resilient families • To discuss practical ways professionals can intervene to build resilience in families impacted by Autism 

3. Disclaimer • Every Child, Every Family is Unique • Few families will experience all of these challenges • You may be aware of all of this information

4. Our Families are DifferentNot (Necessarily) Dysfunctional

5. Understanding the Stressors • Adapting to the diagnosis • Emotional Stress and Grief • Economic and Social Stressors (Ramisch, 2010)

6. Autism Impacts Interactions • Language Processing Disorder • Verbal and Non-Verbal differences • Sensory Processing differences • Child’s differences can impact parent’s reactions/interactions • Families may struggle to make needed adaptations

7. Adapting to the new reality • Disruption of the family life cycle • Adjusting to the diagnosis has it’s own life cycle • Learning to manage other systems (school, medical, DDD, etc.) • Unpredictability of the future • Adaptability/Flexibility are the key • It gets easier with time and practice! (DeMarle, D. J., & Le Roux, P. 2001; O’Brien, 2007; Rolland, 2005)

8. Emotional Stress • All parents experience some or all of these: • Guilt (could I have done or be doing more) • Trying to meet the needs of many (partner, special child, other children, self, parents) • Coping with isolation and marginalization • Ambiguous Loss and Grief (O’Brien, 2007; Ramisch, 2010)

9. Understanding Grief • Grief can be defined as a personal and emotional reaction to significant loss, most commonly the death of a loved one. • Grief can also flow from the loss of dreams and ideas, hopes and expectations: • i.e.. the loss of what might have been (Dowling, Nicoll & Thomas, 2006)

10. Understanding Grief “(y)ou can accept chronic sorrow, …, in the spirit of grieving for someone gone. There remains a real bonding with your child and there is nothing negative in that” (Ross, 1993, p.24). AKA- Ambiguous Loss

11. Ambiguous Loss • A loss that is unclear, difficult to define and cannot be fixed. • Common for parents of disabled children • Intensifies guilt • Stages of Grief (Boss, 2010; Dowling, Nicoll & Thomas, 2006; Ramisch, 2010)

12. Adapting to Ambiguous Loss • Grief and Love can and do co-exist • Important to learn the concept of Both/And • Reframing the loss as one that all parents face (Boss, 2010; Ramisch, 2010)

13. Things the Professional can do • Name the experience for the parent • “It’s OK to grieve about this diagnosis, it’s tough for both of you.” • Share that many parents struggle with adapting to a diagnosis • Keep Ambiguous Loss in mind when parents are difficult

14. Stressors for Couples • Be Aware: Parents often in different places emotionally. • Guilt: I/We are not doing enough • We walk the same line with all of our children • One parent is forced to stay home: Economic Stress (Solomon & Chung, 2012)

15. Is Divorce Really More Likely? • The research is mixed: but a 2004 meta-analysis showed only a 6% increase over general population. • Hartley study also found higher rates but not 80% • However the number and intensity of stressors faced by families with a disabled child is higher and longer lasting. • The Good News: Over time most parents say their experience is positive and transformative. (Hartley, 2010; Risdal & Singer, 2004)

16. A Day in the Life • https://youtu.be/rlNCz-SF-5I

17. Stressors related to daily life • Multiple studies link child negative behaviors to increases in parental stress • Parenting a Special Needs Child is expensive • Stressors are cross-cultural- See extended Bibliography for multiple studies

18. Stressors related to Interventions • Feeling like you are not able to parent without guidance is tough • Parents lose a sense of empowerment and Self-Efficacy • Sometimes resulting in a loss of parenting confidence (Bekhet, Johnson & Zauszniewski, 2012; Bezdeck, Summers & Turnbull, 2010)

19. Resistance • Resistant or Overwhelmed? • So many systems giving advice/directives • Guilt or Grief impacting Parent function? • Ideas to overcome resistance- • Reflect back positives (society does not) • Give permission to ignore some advice • Empathize

20. Siblings • Overall, siblings tend to do very well : Happy family = Happy Kids • Small additional risk of emotional or behavioral problems. • Watch for perfect child syndrome • Level of responsibility for their age/ability • Also experience guilt, grief and adjustment • Talk to siblings at age appropriate level about the disability (Solomon & Chung, 2012)

21. So those are the Primary Stressors What can we do to help? (Giovagnoli, Postorino, Fatta, et al. 2015)

22. What is Resilience “A dynamic process encompassing positive adaptation within the context of significant adversity” (Bekhet, Johnson & Zauszniewski, 2012, p. 650)

23. Building Resilience Froma Walsh’s Work on Resilience: 3 Key Processes • Family Communication Processes • Family Organizational Patterns • Family Belief Systems (Walsh, 2002)

24. Family Communication Processes • Open, Clear Communication • Mutual empathy and tolerance for emotional differences • Collaborative Problem Solving (Bayat, 2007; Ramisch, 2010; Snell & Rosen, 1997; Walsh, 2002)

25. Family Organization Processes • Economic Resources- Connect Low SES to insurance and other sources of additional support • Flexibility and Adaptability • Build a sense of control over the future: • Social supports • Learn what works for others and adapt to suit (Bayat, 2007; Ramisch, 2010; Snell & Rosen, 1997; Walsh, 2002)

26. Positive Belief Systems Matter • Helps make the difficult moments feel worthwhile • Gives clients a roadmap for the future: • What are the new dreams? • How do we define success? • Reminds families that they still have the power to shape their own journey. Empowerment • Build on client’s own strengths (Hall, Neely-Barnes, Graff, et al, 2012; King, Zwaigenbaum, King, Baxter, Rosenbaum & Bates, 2006)

27. Building Family Resilience Practical Strategies for Building Resilience

28. If your client is the ASD Child • Teach them the skills they need to interact well with others • Help them move from the problem saturated view of self to a positive view of self. • Target treatment to the child’s Social-Emotional Development

29. If your client is the Family • Two Phases: Adjustment & Adaptation (Repeat as necessary) • Rituals, Rules and Routines • Positive Belief Systems • Family Identity (Bayat, 2007; Ramisch, 2010; Snell & Rosen, 1997)

30. Rituals, Rules and Routines • Rituals: highlight emotional connection • Create meaning and continuity for a family • Can be everyday moments, but given significance • Rules: defining roles and responsibilities • Clarity decreases misunderstandings • Routines: The daily coping mechanisms (Imber-Black, 2002)

31. Thinking about your home program • How can interventions you assign to families incorporate Rituals, Rules and Routines? Group Activity: What is something that you often assign to families? Can it be tweaked into a Ritual or Routine?

32. How do you view parents? Studies suggest: Professionals don’t view parents as equal partners Goldilocks Perception: Too Much, Too Little, Just Right Professionals may unconsciously blame parents (Bezdeck, Summers & Turnbull, 2010)

33. Empower the Family • Family is front and center in treatment • Build Parent Efficacy • Parents will be more likely to understand when it is time to decrease treatment frequency or change IEP goals • Confronting Reality/Redefining Success (Rolland, 1994)

34. Positive Coping = Psychological Health • Negative coping mechanisms include: • Refusing to accept the reality of the situation • Being problem-focused at all times • Worrying a lot • Isolating from friends or family • Blaming others or focusing on anger • Feeling Helpless (Pottie & Ingram, 2008)

35. Positive Coping = Psychological Health • Effective coping mechanisms include: • Positive reframing of experience • Managing Daily Stress • Increasing Social Support • Increasing parent’s sense of efficacy • Learning effective, positive parenting techniques (Dyches, Smith, Korth, et al, 2012; Pottie & Ingram, 2008)

36. Preserving Hope • Research indicates hope is vital to Resilience • Tightrope for Early Interventionists: • Future is uncertain • Realistic expectations important • Detrimental to Parent to link parent action directly to Child Outcome • 1,000 things a parent “should” do • No one can possibly do them all (Ward & Wampler, 2010)

37. Re-writing client’s story: Parent & Child • Explore with families: What are the good parts, where is the value in the differences? • This is so important: Society often reflects that these children and families are failures.

38. Changing Point of View • Explore how child and family influences society? • Parents report that loving a child with a disability has: • Increased their compassion • Taught them how to love unconditionally • Given them an appreciation of life’s simple joys • Increased their patience (King, Zwaigenbaum, King, Baxter, Rosenbaum & Bates, 2006)

39. Ideas for Professionals • Positive observations about the child and if possible build hope for the future • Reflect back parental positive appraisal of child or of family experience with approval • Help connect them to other families • Involve family in goal development (Bayat, 2007; Imber-Black, 2002; Ramisch, 2010; Schieve, Blumberg, Rice, et al, 2007; Snell & Rosen, 1997)

40. Discussion

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