WHAT PARENTS WANT: SUPPORTING FAMILIES AFTER THE AUTISM DIAGNOSISJennifer Fung, PhC

University of Washington

SESSION OBJECTIVES

-Identify common themes in reaction to diagnosis

-Identify themes for support immediately following diagnosis

-Become familiar with a model of intervention that was designed to meet the specific needs during this critical time

PROJECT

Preparation for doctoral dissertation study Literature review

Family reactions to disclosure of diagnosis Family experiences following diagnosis Studies from US, UK, Taiwan

Informal interviews with families 10 local families 2+ years out from their child’s diagnosis

Develop, implement, and evaluate a program for recently diagnosed families in Seattle area

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

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. 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

Mixture of emotions Relief

Someone else has corroborated parental concerns Child’s behavior explained Allow access to services

“Well, I think it was a relief for both of us to know he had autism. Once the diagnosis was made it did help. We felt better, I know this is a horrible thing to say but if there is a label for the child, you know where to go for help. It was a new start, like he was born again”

REACTION TO DIAGNOSIS “It all made sense, finally… we could go

forward. My daughter was finally diagnosed at the age of 5 with PDD-NOS. The ages from 3 to 5 were very difficult. It took a lot of doctors, but finally there was some relief. Families need to never give up.”

“I can honestly say that I thought I was prepared to hear that my daughter had autism but I don't think any parent is prepared to hear this about their own child... My daughter has always had a beautiful smile but I knew that something just wasn't right. And in a sense I can probably say that it was a relief, I am now in the process of finding someone to work with her.”

REACTION TO DIAGNOSIS Lost Time

“Window of opportunity”Pressure to locate and begin servicesSadness at the loss of valuable time that

could not be recaptured

“Several years have passed away… we had lost our son as he used to be.”

“I was devastated and angry because I suspected before but couldn't get support for an evaluation. My little one basically missed out on about 8 months of early intervention services.”

REACTION TO DIAGNOSIS Guilt or Anger

Attributions to cause of events Search for explanations and meaning

“When my daughter was diagnosed with autism, part of me was relieved - we had a name, a reason, we could move forward and get her the help she needed. But I must admit to feeling a bit angry too. I did everything right in my pregnancy, I didn't drink or smoke, I did prenatal exercise, I had an easy ,trouble-free labor… how could this have happened?”

“I was angry at first, I thought I did something wrong. I remember my mother even blamed me. She said it was because I put him in front of a television. I was young when I had him. I thought I was being punished somehow. I thought I didn’t eat right.”

“There has been a lot of guilt over the years. When you realize that there is something wrong with your child, the first thing you think is what did I do, what did I eat, did I eat something, did I do something. You try not to talk about it sometimes because it made you feel so guilty.”

REACTION TO DIAGNOSIS Grief

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

“I felt that relief, but couldn't help but mourn for the son I felt I’d lost... he wont do this, he wont be able to do that... girlfriends, marriage, grandkids for me”

“I wasn’t relieved. I was confused, and pissed off, and really sad. I thought I had lost my daughter. I blamed myself. As time went on I have used the diagnosis to push for help for my daughter. Now I’m relieved. But it took some time to come to terms with it”

“First came the relief. I wasn't crazy. I wasn't a bad mom who couldn't control an unruly son. Then came the sadness. I was hit with the idea that nobody would love him. He would go through life with out someone to lean on. Finally one day as I watched him, he was about three at the time, he said something, I don't even remember what it was, and I was hit with the overwhelming feeling that this kid was going to do great things.”

AUTISM: IMPACT ON FAMILY

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

Common themes Need for information

About autism About autism as it specifically relates to their child

Resources Skills Tone of information Support Advocacy

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 about the difficulties in the future Hope for progress when beginning early intervention, treatments

Focus on strengths “There was very little info about autism available to me. They made

his prognosis sound so bleak. They told me he would never talk, never go to regular school, never show affection, that he was “profoundly retarded”. I didn't want to believe it. I dreamed of everything for him, and he is doing so well” 

“I was terrified, since all I had gotten over the internet was negative. I though my child will never say "I love you" or feel the emotion of love? But that was wrong…. My boy is the most loving person I have ever known”

“I believe that when parents are told during the diagnostic assessment that their child has autism, they should be assured that there are things they can do, like therapies, PECS, diet, to make a huge difference. Obviously don’t mislead them to think these things are a cure, but don’t lead them to think that the future is bleak, and doom and gloom, as I was.”

NEED: INFORMATION ABOUT AUTISM

“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”

General information about autism Study: 38% of parents reported that they were well-

informed about ASD Searching on own for information increase feelings

of worry and hopelessness Credibility and negative tone of info available/found

NEED: INFORMATION ABOUT AUTISM  Individualized information

Study: Just over 50% given information on child’s specific traits

24% received information on services appropriate to child’s needs

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 find the information to be extremely overwhelming

sometimes and when I feel stressed or terrified for my son, I have short cries in the car. Most importantly, I take breaks. I will have a “no autism" day. We don't talk about it, read about it or anything. We just deal with life that day. I think the most important thing about dealing with a child with autism is to take care of yourself. As parents we are so worried about our child, that we forget to worry about ourselves, but we are no good to them if we are burnt out or stressed out”

NEED: EMOTIONAL SUPPORT “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”

“I was trying to be the strong one, so I did my best during the evaluation and when they discussed the results with me. It was after that it hit me, I felt lost and like no one could understand”

“It was especially hard because my husband was deep in denial and did not want to talk about anything that was going on. I don't think I've ever gone through such a hard, lonely time in my life”

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”

“It’s important to recognize that parents do know what their child needs. They may nit be able to choose the curriculum, but they do know what their kids need”

“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 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

Assist family in assimilating to having a child with special needs

“At first, I was in a stage of denial but after a while we accepted it and started seeking help. Thanks to some of the support programs out east we began to learn more about autism and it became less stressful. We learn[ed] how to communicate better through the [More Than Words] program. Myself, once I learned that he just needed a different way to communicate things improved drastically

DUNST’S MODEL OF SOCIAL SUPPORT

SOCIAL SUPPORT MODEL Positive adaptation and coping

Spousal support Extended family support Informal support

Friends, Neighbors Other parents Religious groups

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 of problem solving strategies to manage

situations

MODEL PROGRAM UK community program (Mansell & Morris 2010)

Grant to expand diagnostic services Add a family support worker and support group Group provided packet of info to parents just

diagnosed Provided by diagnostic center

Contains information on Nature of ASD Local and national resources Local professionals Educational needs Therapies Support for caregivers Child care and respite Financial support Activities and clubs

MODEL PROGRAM

UK community program (Mansell & Morris 2010) Family support worker made home visit in the week

following diagnosis Families also had access to separate, but closely

connected, support group supervised by local clinical psych Runs several workshops every year including a

speech/language/behavioral program 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

MODEL PROGRAM EarlyBird program (Sheilds et al., 2001)

Community program in the UK 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

families and individualized home visits. Program content

Increase parents’ understanding of autism Differences between development in autism and typical

development, How characteristics of autism may influence a child’s interactions

with those around him Communication

How to support interactions and social communication with the child

Behavior Prevention of challenging behavior Identification of potential causes or functions.

MODEL PROGRAM Program evaluation compared a group of

parents who had received this treatment to a wait-listed control group

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

EVENTUALLY… Adaptation

Coping strategies Attributions

Locus of cause Stability Controllability

“Our son has made us closer, this bonds us together. He is part of the family. When he is not there, there is a big hole. He is a very happy child, something positive is his gentleness, his good nature. I cannot imagine him without autism”

“I learned from my son that being a parent is a two way street. I have learned to be less selfish and more reflective in my life. I have learned to love truly unconditionally. And I have learned that I have more strength of character to fight for his behalf than I ever thought I had. I have learned to be humble”

RESOURCES FOR FAMILIES

Online Autism Speaks “First 100 Days Kit”

http://www.autismspeaks.org/community/family_services/100_day_kit.php

Autism Speaks Family Services Resource Guide www.AutismSpeaks.org/community/fsdb/index.php

Autism Society of America www.Autism-Society.org

Arc of Washington Parent-to-Parent Program (will match parents up by language & cultural background, as well!) http://www.arcwa.org/parent_to_parent.htm

RESOURCES FOR FAMILIES

Online UW Autism Center Video for Families

http://depts.washington.edu/uwautism/video/video.html

Autism Outreach Project Phone 1-888-704-9633 autism@esd189.org http://autismesd189.org

Eastern Washington Respite Care Ellensburg/Kittitas County Parent-to-Parent

Respite program (will help train to set up in your area) Jean Kirkham, jmkbear1950@gmail.com

RESOURCES FOR FAMILIES

Articles Article for practitioners on providing emotional

support to families Brotherson, M. et al. (2010). Partnership patterns:

Addressing emotional needs in early intervention. Topics in Early Childhood Special Education, 30(1), 32-45.

Books “Behavioral Interventions for Young Children with

Autism”, Catherine Maurice, Gina Green, and Stephen C. Luce (Pro-Ed, 1996)

“A Work in Progress: Behavior Management Strategies & A Curriculum for Intensive Behavioral Treatment of Autism”, Ron Leaf, PhD, John McEachin, Jaisom Harsh (Drl Books, 1999)

RESOURCES FOR FAMILIES

“Facing Autism: Giving Parents Reasons for Hope and Guidance for Help”, Lynn M. Hamilton (WaterBrook Press, 2000)

“Overcoming Autism: Finding the Answers, Strategies, and Hope That Can Transform a Child’s Life”, Lynn Kern Koegel, PhD & Claire LaZebnik (Penguin/Non-Classics, 2005)

“Siblings of Children with Autism: A Guide for Families”, Sandra L. Harris, PhD and Beth A. Glasberg, Ph.D. (Woodbine House, 1994)