Aging with Autism and Mental Retardation: Challenges and Rewards of Caregiving byOlder Parents and Adult Siblings R2.1
(Marsha Mailick Seltzer, Ph.D.; Marty Wyngaarden Krauss, Ph.D.)
Statement of Problem and Background
Research Questions or Hypotheses
Data Collection Strategies
Progress to Date
Key Findings and Potential Implications
Presentations and Publications
Statement of Problem and Background
This study is shaped by our goal of providing scientifically credible information about a vastly under researched topic of immense importance to persons with autism, their families, and the public/private resources that sustain them. This study is timely in light of the fact that the population of adults with autism is now increasing in size, as the first cohorts diagnosed in 1943 (the year when autism was first described in the literature) have reached middle age and their parents approach or are in old age. Given the lack of research addressing these questions more research is needed to inform public policy and social services for adults with autism and their families.
We have learned from our previous research that family based caregiving is a family-wide issue. In particular, siblings often play a unique, though understudied, role in the social world of their brother or sister with a disability, and serve as a vital support to the parents. For this reason, we are committed to investigating the current experiences of siblings of adults with autism, and the extent to which they are prepared and willing to assume various types of roles for their brother or sister with autism after the aging parents are incapacitated or deceased.
A critical need exists to conduct longitudinal studies of these issues in order to describe, understand, and convey the unfolding and changing nature of the lives of adults with autism and their families during the later decades of the life course. The deepest worry in every family of a person with a lifelong disability, such as autism, is what will happen to the family member in the future. Where will he or she live? What kind of support will be available? Will his or her functioning improve, stay the same, or deteriorate? By studying a cohort of 400 families of adults with autism over a 5 year period, we will address these pressing concerns.
Even though these questions are universally experienced by families of individuals with disabilities, very little is known about the unfolding life course of parents, siblings, or of the adults with autism. Almost all of the literature on families with an individual with autism focuses on the early childhood period. Two basic themes emerge from this research. First, studies have generally found that parenting a young child with autism is more stressful than parenting a child with another type of disability such as Down syndrome (e.g., Fisman & Wolf, 1991; Koegel et al., 1992; Rodrique et al., 1992). Second, studies have examined how families have adapted to the demands of parenting a young child with autism (e.g., Bristol et al., 1983, 1987, 1988, 1993, 1996; Gill & Harris, 1991).
Research on the family impact of disability during the later years of the family life course has generally not included families of adults with autism. While Van Bourgondien and Elgar (1990) suggested that the vast majority of adults with autism continue to live at home with their parents, virtually no attention has been paid to the unique stresses experienced by these aging families, the service systems they access or need, or the quality of life achieved by adults with autism. This is all the more remarkable given that many studies of families of young children with autism have identified worries about the future as a significant source of stress (e.g., Donovan, 1988; Koegel et al., 1992; Konstantareas & Homatidis, 1989). How these aging families cope and the ways in which they obtain support are of critical concern to policy makers interested in improving the service system for this population.
Theoretical models of families and caregiving were used to frame this study.
Research Questions or Hypotheses
Three questions are addressed in this study.
1. What are the challenges and rewards of the caregiving experienced by aging parents and adult siblings of persons with autism?
2. What factors are associated with a favorable quality of life of the adult with autism?
3. How do the challenges and rewards of caregiving and the quality of life change over time, and what factors contribute to these changes.
This is a longitudinal study of adults with autism and their and aging parents and adult siblings. Mothers, fathers and siblings are the sources of data in 3 waves of data collection.
Sample. In order to study the challenges and rewards of family caregiving and the quality of life of the adult with autism, we recruited a new sample of 400 families (200 each in Wisconsin and Massachusetts). The families met two recruitment criteria: 1) the adult with autism will also have the diagnosis of mental retardation (MR), and 2) the mother is between the ages of 55 and 85. Roughly half of the adults will live at home with their parents, while the other half will live in a variety of types of residential programs.
Families were recruited through collaboration with the Massachusetts and Wisconsin chapters of the Autism Society of America (via mailings, announcements placed in newsletters and at parent meetings), public and private schools serving persons with autism (using alumni information), community psychiatrists, area offices of the Department of Mental Retardation (in Massachusetts) and county Developmental Disability Coordinators (in Wisconsin), professional staff at the Waisman Center and other clinical sites in Wisconsin, and professional staff at the Shriver Center in Waltham, Massachusetts, at which a major NICHD-funded research effort is being conducted on children with autism.
We utilized the same recruitment procedures that have worked so effectively in our past research. Recruitment packets were distributed by agencies or professionals to families who meet our criteria. The packets included: 1) a brief description of the study and its purpose, 2) a "Question-and-Answer" document that addresses the main questions most potential participants ask about a research project, 3) letters of support, and 4) a postcard to return to the project office indicating a willingness to be contacted.
Data Collection Strategies
Our data collection strategies targeted three members of each family: the mother, the father, and one adult sibling. While this approach represents an extensive effort, we have found that each member of the family has had unique and compelling experiences and that it is necessary to include multiple members to develop the kinds of profiles, analyses, and case studies that will give "voice" to families of adults with autism. We have also found that, in most cases, families enjoy the opportunity to discuss their experiences, appreciate the quality of the interviewers and questionnaires presented to them, and willingly give their time to such research. If any family member chose not to participate, the other family members were included in the research. Our requirement, however, is that the mother in each family was the primary respondent for the family.
Data collected from mothers
The methodology for data collection of the proposed study closely paralleled our research on caregiving for adults with MR. Mothers were interviewed in their homes by a trained interviewer. The interview generally lasts about one and one-half hours, and can be interrupted for a brief break if the mother requests.
Following the interview, mothers were asked to complete a brief self-administered questionnaire that contains standardized and validated measures on issues such as parenting stress, sense of competence as a parent, psychological well-being, coping strategies, concerns about the future, etc. While the mother completes the self-administered questionnaire, the interviewer reviews the interview to ensure that all questions were asked, and begins coding the data according to the training they have been provided. At the completion of the entire data collection process, the interviewer gives the mother a small gift to thank her for her participation.
Data collected from fathers
A separate phone interview was conducted with fathers within two weeks after the mother interview. The phone interview will be conducted by a different interviewer than the one who interviewed the mother (to ensure confidentiality). The questions paralleled those asked of the mother, but without repeating questions regarding family demographic characteristics, past and current service histories of the adult with autism, or other factual information that has been provided by the mother. Rather, the questions focused on the father's personal experiences as a parent of a person with autism, his expectations for the future, and advice he would offer to other parents and to service providers. The phone interview took about one-half hour to complete. The fathers also completed self-administered measures and return them to the project office by mail. In our experience, fathers truly appreciate being included in studies of this kind, are quite comfortable with a telephone interview, and offer rich and valuable information in this format.
Data collected from adult siblings
One adult sibling of the individual with autism were contacted and asked to complete mailed survey. The sibling who was be surveyed was the brother or sister with the closest relationship with the individual with autism, as identified by the mother. A letter was sent to the sibling with attachments similar to those we used to recruit the parents, followed by a mailed survey. The questions in the survey asked the sibling to describe his or her relationship with the brother or sister with autism during childhood, adolescence, and now in adulthood. Also, the sibling's degree of knowledge about the brother or sister's service needs will be assessed, as will the extent to which the sibling perceives that the brother or sister affected various aspects of his or her life (e.g., career, where to live, friends, etc.). Siblings' expectations for the future care or supervision of her brother or sister with autism will also be assessed. Finally, siblings were asked what advice they would offer to parents of persons with autism, other siblings, and service professionals.
Progress to Date
Our project is progressing according to our time line. Our first wave of data collection conducted in 1999 yielded 407 families of adolescents and adults on the autism spectrum. We finished our second wave of data collection in 2001 and have started our third wave in March 2002. A fourth wave of data collection is being planned and is scheduled to begin August 2003. While mothers are interviewed as the primary caregiver, we are also conducting surveys with fathers and siblings.
During our first wave of data collection we collected questionnaires from 195 fathers, and 159 father questionnaires were collected during our second wave. At our second wave of data collection, we collected 236 questionnaires from siblings, and are currently in the process of collecting wave 3 sibling questionnaires.
In order to understand cultural variation in caring for adolescents and adults on the autism spectrum, we have expanded our data collection to include a special recruitment effort of Latino families with a goal of interviewing 40 to 50 families. We currently have 26 families who have volunteered to participate, and have interviewed 18.
Key Findings and Potential Implications
At this time we have demographic characteristics and information about the social lives of individuals with autism and their families. Qualitative reflections and experiences from the siblings of individuals with autism have also been collected. In general, families of individuals with autism experience more stress than families of individuals with intellectual disabilities.
The reflections from families incorporate the themes of 1) living, loving & learning; 2) special things about our child; 3) the hard times; 4) thoughts about our son or daughter live at home; 5) thoughts about our son or daughter live away from home; 6) on how parents have changed; 7) impacts on social and family life; and, 8) reflections on a life. Selected quotes from families highlight each of the themes:
Living, loving & learning: "...She keeps us focused on what's important in life - compassion and love - and helps us become stronger as a family." "...Because of autism, I am able to see how society is set up for 'normal, average.' It is not set up for someone with a disability or for parents of a child with a disability." ...I have learned to deal with this and other common problems in conjunction with my wife. We feel closer as the result of having an autistic child.
Special things about our child: "...She is part of our family. We all give and take with each other. Her insight is unique and challenging . We're richer for her being here." "...He keeps us laughing. He just gives everyone a different perspective. It makes you see the world through other eyes. He has a sense of humor - he's funny. He gives us better patience and appreciation for other people's shortcomings."
The Hard Times: "...It is necessary to spend more time with him which takes time away from my other son. Often there is tension in the day-to-day running of the home." "...The hardest thing is watching her struggle in a society that does not accept her. It's also hard to know that she is very lonely and not know how to help her make friends."
Thoughts about having our son or daughter live at home: "...He is safe and is taken care of. He is less likely to get into trouble in the complex society. He can help to do some small things. He can keep us company." "...Since puberty he has done some negative changing and this is very stressful. I probably won't ever be able to work outside of our home." "...Companionship: it's like having a friend other than a spouse to live with. Security knowing she's safe and being well taken care of. Closeness of family, being a family."
Thoughts about having our son or daughter live away from home: "...My husband and I finally have time for ourselves. The home atmosphere is much less stressful. We have him with us each weekend and by not having to deal with the daily stress, we have a lot of fun with him on the weekends. He has grown and changed because of his independence from us. It's been great for us and great for him. My mental health is vastly improved since he moved." "...His relationships with both parents, especially Dad, have improved. He has grown tremendously, socially and in living skills..." "...The separation - the worry - the love we need to give him that no one else can nor does. The feeling that we abandoned him. Not being able to take care of all his needs forever. The guilt of saying goodbye and leaving him behind. The stolen moments with our precious boy..."
On how parents have changed: "...First, I have been more involved with immediate family. Second, I have diverted myself from some career opportunities. Finally, I have been closer to my wife than I otherwise might have been. We have suffered the grief, etc., together." "...I never thought I would have a child who could not read. My son has taught me a humbleness and to have compassion for those less fortunate than myself. My son deals so well with his disability; he inspires me to be a better person."
Impacts on social and family life: "...Not at all socially isolated. We socialize with friends and family who are aware of and understand her problems - most enjoy her." "...We are ignored by neighbors. We have two friends." "...Siblings don't feel they can invite friends over."
Reflections on a life: "...That autism can be a really great thing! That I had strengths that I never knew I had. I never take things for granted..." "...I've learned that living with a kid with a disability can be a blessing and a privilege…"
Consumer dissemination and reports
We have a website which can be found as a link in the following URL: http://www.waisman.wisc.edu/family. Here we have project information about our study and 4 consumer reports:
Report #1: Year 1 Book of Quotes
Report #2: A Profile of Adolescents and Adults with Autism Spectrum Disorders
Report #3: Reflections from Adult Siblings Who Have a Brother or Sister with an Autism Spectrum Disorder
Report#4: Recommended Resources From Families of Adolescents and Adults with Autism Spectrum Disorders
The above reports are also available in print form and have been distributed to the families in our study as well as the service community in Wisconsin and Massachusetts. The following publications were also produced:
Seltzer, Krauss, Orsmond, Vestal, (2001). Families of Adolescents and Adults with Autism: Uncharted Territory. International Review of Research in Mental Retardation, 23, 267-294.
Orsmond, Krauss & Seltzer (2002). The Social Lives of Adolescents and Adults with autism Spectrum Disorders or Down Syndrome. Manuscript under review.
Seltzer, Krauss, Shattuck, Orsmond, & Swe (2002). The symptoms of autism spectrum disorders in adolescence and adulthood. Manuscript under review.
Family Involvement by Aging Parents and Adult Siblings with Individuals
with Mental Retardation Living in Residential Settings (R2.2)
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