FAMILY NEEDS FOR SUPPORT FOLLOWING AN AUTISM DIAGNOSIS Jennifer Fung Haring Center for Applied Research & Training in Education University of Washington

Family Support Study 

UW doctoral dissertation study 

Implement and evaluate a social support intervention for caregivers of newly-diagnosed children with ASD

Family Support Study 

Social Support as a Framework for EI

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Family Support Study 

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Framework for intervention  Reduction in demands that are negatively related to adaptation  Increase access to resources that are positively related to adaptation  Increase strengths related to adaptation  Increase repertoire p of p problem solving g strategies i to manage situations i i Forms of support related to positive adaptation and coping  Spousal support  Extended family support  Informal support Friends Neighbors Other parents  Religious groups   

Family Support Study 

Methods 

Participants Convenience sample 10 families  Child had received a diagnosis within past 6 weeks  

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Intervention Autism Speaks “First 100 Days Kit” Bi-weekly meetings with local ‘guide’  Family-directed  

Family Support Study 

Methods, cont. 

Outcome measures Family stress & well-being Caregiver-child interactions  Child development  Social validity  “Field Notes”  

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Family Support Study 

Preliminary results 

Literature review  

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Informal interviews with families  

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Family reactions to disclosure of diagnosis Family experiences following diagnosis 10 local families 2+ years out from their child’s diagnosis

Preliminary study results 

Analysis of field notes

CAREGIVER SUPPORT  

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Family-centered care basis of EI philosophy Parent training/education g has shown positive results, but parents at this particular point in time have a specific set of needs Other forms of social support needed (Dunst, 2000)

DIAGNOSING AUTISM Prior to diagnosis, families almost always report a sense that something isn’t “right”  Worry  Stress  Conflict  Nationally, families report having concerns around 18 months, seek help or advice around 24 month, diagnosis not until 3.5-6 years 

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DIAGNOSING AUTISM 

Satisfaction with diagnosis related to  Age of diagnosis  Amount of time between concern and diagnosis  Clarity or certainty of final diagnosis  Quality of information given  Amount and type of information

REACTION TO DIAGNOSIS “My experience following receipt of the diagnosis, was affirming in part, devastating in whole. I felt, even with my husband and my mother’s presence, very alone. No one could understand the loss that I felt for a child that was visibly present. I felt unsupported and angry. Mad, extremely so unrealistically so. so...unrealistically so How dare God? I am a good person… Why me?! Later would come depression, embarrassment, and hopelessness. Her father went through a bit of denial. I can’t say I ever denied or distrusted her diagnosis. The strain on relationships is overwhelming. Every day was a different experience. Some good, some bad, each one needed to progress to where we are today.”

REACTION TO DIAGNOSIS 

Immediately following diagnosis:  Relief  Someone else has corroborated parental concerns  Child’s Child’ b behavior h i explained l i d  Allow access to services  Lost Time  “Window of opportunity”  Pressure to locate and begin services  Sadness at the loss of valuable time that could not be recaptured

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REACTION TO DIAGNOSIS 

Guilt or Anger ‘Cause’ of event  Search for explanations and meaning 

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Grief ‘Loss’ of the child that had been planned for  Regression  Worry about the future, unknown 

AUTISM: IMPACT ON FAMILIES 

Overall impact on families Differential adaptation and response  Child’s characteristics – severity of symptoms  Family factors  Unique patterns of stress experiences by families of children with autism  Lower feelings of parenting competence  Less marital satisfaction  More caretaker burden  More family and self-blame as a coping style  Common sources of stress  Challenging behavior  Communication 

FAMILIES SPEAK The reported needs of families often related to experiences during the diagnostic process  Needs of families will change over time, this study reflects needs expressed by families in the weeks/months immediately following diagnosis  Combination of child and family-focused support 

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FAMILIES SPEAK: NEEDS FOLLOWING DX 

Family Needs: Common Themes  Delivery/tone of information  Need for information  

About autism About autism as it specifically relates to their child

Local Resources Emotional Support  Advocacy  New Skills  Someone to listen  

NEED: DELIVERY OF INFORMATION Diagnostic process is often deficit-focused Literature identifies importance of fostering hope for families, need honest yet hopeful message  Balance  Realism R li about b the h difficulties diffi l i in i the h future f  Hope for progress when beginning early intervention, treatments  

NEED: INFORMATION ABOUT AUTISM 

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“During the appointment we were flooded with information. Because the disclosure of diagnosis brings about a lot of emotions, we did not remember all that was said. Furthermore, a lot of questions arise a few says after the disclosure. Therefore, it is so important that you have someone to answer those questions questions” General information about autism  Study: 38% of parents reported that they were wellinformed about ASD  Searching on own for information increase feelings of worry and hopelessness  Credibility and negative tone of info available/found

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NEED: INFORMATION ABOUT AUTISM 

Individualized information  Study:  Just over 50% given information on child’s specific traits  24% received information on services pp p to child’s needs appropriate  How to understand child’s needs  Support child based on needs, strengths  Appropriate services based on child characteristics  Priorities for intervention  Format of information  Comprehensive & concise  Jargon-free  Written (vs. electronic)

NEED: LOCAL RESOURCES Need for lot of info on resources locally, given difficulty accessing for many families  “I think the most helpful thing for a parent of a recently diagnosed child is to contact their national autism society and ask to be put in touch with local resources. Parents need to know of the many available services in their area and gain experience navigating the system.” 

NEED: EMOTIONAL SUPPORT Parent to parent support Respite care  Informal supports  Support groups  

“We need role models – people who have survived…”  “I am sure there were people, other mothers in the same situation I could have talked to. I just choose not to look into doing so. I held in a lot, emotionally. I think support is vital to mental health, social relief, and (finding a) common understanding and advice. That would have been helpful, to have that resource directly offered” 

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NEED: ADVOCACY 

Families often find themselves in the role of advocate  Need to be educated about existing services  Need to know child’s individual strengths and needs and how they can be met  Familiarize with rights  Learn to negotiate service-delivery system

“I want to be taken seriously by the experts in the educational and medical fields… looked at as the person that knows my child best and knows my child’s needs”  “I felt as though my world had fallen apart, but after feeling sorry for myself I became the warrior that my daughter needed” 

NEED: NEW SKILLS 

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Acquire new knowledge and skills, along with the confidence that they will be able to use these skills for the long term  Communication  Interactional skills  Challenging behaviors “At first, it was a stage of denial but after a while we accepted it and started seeking help. Thanks to some of the support programs we began to learn more about autism and it became less stressful. We learn how to communicate better through the school program. Once I learned that he just needed a different way to communicate things improved drastically”

Other Support Interventions 

UK community program (Mansell & Morris 2004)  Grant to expand diagnostic services  Add a family support worker and support group  

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Provided packet of info to parents just diagnosed Family support worker made home visit in the week following diagnosis Access to separate, but closely connected, support group supervised by local clinical psychologist Access to several workshops every year for parents of children with autism

Positive outcomes for families     

Ability to obtain useful info from a variety of sources Access a variety of services Rated the services highly for support Used more coping strategies Increased use of support services

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Other Support Interventions 

UK EarlyBird program (Sheilds et al., 2001)  Education and support program for families of recently diagnosed children  28 to 61 months  3-month program  Goal was to help children develop by increasing parent feelings of confidence and competence  Combination of weekly group sessions of no more than six i families f ili and d individualized i di id li d home h visits i it  Positive outcomes for families  Rated themselves as less stressed following the intervention (no change in stress levels in the control group)  Demonstrated increased ability to modify and adjust their interactions with their child based on the child’s level of development (no change in control group parents)  Children from the treatment group made more progress in communication, daily living, and social skills than children in the control group

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