Autism & the Family

See also:    Autistic Parents & Parenting    Siblings   

Internet Resources

The present study examined the applicability of the double ABCX model of family adjustment in explaining maternal adjustment to caring for a child diagnosed with Asperger syndrome. Forty-seven mothers completed questionnaires at a university clinic while their children were participating in an anxiety intervention. The children were aged between 10 and 12 years. Results of correlations showed that each of the model components was related to one or more domains of maternal adjustment in the direction predicted, with the exception of problem-focused coping. Hierarchical regression analyses demonstrated that, after controlling for the effects of relevant demographics, stressor severity, pile-up of demands and coping were related to adjustment. Findings indicate the utility of the double ABCX model in guiding research into parental adjustment when caring for a child with Asperger syndrome. Limitations of the study and clinical implications are discussed.
Kenneth I. Pakenham
We have conducted interviews with more than 400 families who have a son or daughter with autism. Our study on the challenges and rewards families experience in rearing a child with autism is the largest federally funded project ever conducted on this issue.
Marsha Mailick Seltzer, Marty Wyngaarden Krauss
People have had to shift their perspective on life in order to cope with the strains and get on with the business of living a life with meaning and happiness.
Paul Shattuck
Our primary goals are (1) to conduct innovative research on family caregiving and the social lives of adolescents and adults with autism, and (2) to disseminate our research findings to policy makers, practitioners, families, and the general public.
M.M. Selzer
The purpose of this pilot project was to identify problems and needs faced by aging parents caring for developmentally disabled children. The major activities carried out in this pilot project were 1) gathering relevant research literature, 2) the identification of families in the Queens Region of Prince Edward Island, Canada, who had at least one parent age 50 and older who was caring for a child with a developmental disability, and 3) interviews with 10 of the families identified.
Lori E. Weeks et al
There is no denying that AS, having now been put on the family law radar, will now be open to civil liberties violations by malicious litigants. But the fact that new discoveries and broader paradigms can be misused has never been a reason for suppressing them.
Judy Singer
The world's first advocacy group run by and for people brought up by a parent on the autistic spectrum.
Judy Singer
Covering: Siblings; Support for Fathers; Challenging Behaviour; Sexuality; Stress Management
Pauline Shelley
This is for all the moms of children with Asperger Syndrome. Want to be more effective in helping your child? Want to give him the best possible training to deal with AS and succeed? Then you need to access a secret weapon. You.
Dan Coulter
Problems in parenting are linked directly to the core neuro-cognitive clinical features of Asperger's Syndrome itself, namely weak central coherence, poor cognitive shifting and lack of a theory of mind.
Sheila Jennings Linehan
This mini-course covers the social implications of Asperger's Syndrome, as well as the emotional difficulties that frequently occur with this diagnosis. The impact on family life is addressed, along with suggestions for working with those with Asperger's.
Deborah Samet
Objective: The purpose of this research project was to examine the relationship between parenting stress and a child'sability to functionally communicate within families who participated in an early intervention developmental disability program. Method: Using a two-group, cross-sectional survey design, this study explored the above relationship with respect to total stress as well as domain-specific stress. In addition, this study described how this relationship differed with respect to key demographic characteristics. Results: The findings from this study of 64 parents were statistically significant and informative. Conclusions: The findings suggest that a child's ability to functionally communicate does negatively relate to the level of parenting stress in the parent-child subsystem. Implications for both social work practice and policy are presented.
Linda M. Ello, Sandra Donovan
A mailing list for parents of autistic children who are themselves on the autistic spectrum, as well as neurologically typical parents who are equally devoted to appreciating and respect their autistic child's uniqueness. This group will not promote ABA, although there may be aspects of ABA that have helped some autistic children. We will not promote drugging children into compliance. We will not discuss ways of curing our autistic children to make them "indistiguishable." Strange quack remedies will not be discussed seriously here; anti-vaccination speeches will not be tolerated. Discussion of nutrition and health, as well as education and related therapies, is welcome.
The focus of this dissertation was to gain a better understanding of autism, and its effects on family life. Studies have been done on the behavioral and cognitive effects of autism on the affected child, and how those effects manifest themselves into family life. No studies were found, however, that give a rich, qualitative account of what it is like to live with autism using first hand accounts as data, and what and how families are learning in the process.
Paul W. Glass
People often spontaneously describe to me how the diagnosis of their child's autism was a bomb that exploded their hopes and dreams. The calendar of their lives was ripped off the wall and replaced by an uncertain future...
Robert Naseef
People often spontaneously describe to me how the diagnosis of their child's autism was a bomb that exploded their hopes and dreams. Behaviors of children with autism frequently add to the trauma the family experiences.
Robert Naseef
It is learning to make Autism a part of your life that you acknowledge, that you deal with, that you recognize will never go away. You have this in your life. There is nothing to be gained by pretending there is nothing wrong. But keep it in perspective.
Adelle Jameson Tilton
One afternoon last Spring Nancy walks into her studio and finds it ransacked. Portraits and still-lifes are smeared with cadmium red. Paint tubes are smashed, as are the Krispy Kreme donuts and homegrown squash that she brings to life on canvas. A lock left unlatched for five minutes; a studio laid bare to the visual and tactile cravings of her severely autistic son. Hours pass before Nancy has the heart to mop up.
Katherine Beals
If you look at the homes in which Autistic children live, you will find one thing in common. They are virtually bare of any luxuries. The reason is simple, the parents or other caregivers have chosen to Autism Proof their homes.
Floyd Tilton
These notes focus upon the experiences of siblings of children with autism and their interactions with parents; and upon the cognitive coping strategies that may be adopted by mothers when facing the demands of bringing up a child with autism.
Mike Connor
I'm going to try to share what having a child with autism has meant for me, my husband, my other child and our home. We've experienced many emotional and stressful effects, as well as love and joy, conflict and pain, destructiveness and togetherness.
I am convinced that the negative impact on families and on autistic persons is increased and perpetuated by crisis-oriented descriptions of autism that focus on abnormality and deficit, that automatically characterize early education as a heroic "intervention" if the children being educated are autistic, that raise the specter of institutionalization simply because that is the way society has tended to address cognitive difference in the past, and that describe autism as something that must be destroyed.
Kathleen Seidel,
Parenting stress was higher in delayed condition families. Regression analyses revealed that the extent of child behavior problems was a much stronger contributor to parenting stress than was the child's cognitive delay.
Bruce Baker et al
We tested the bidirectional relations between behavior problems and maternal well-being and found evidence of both directions of influence. Initial levels and changes over time in behavior problems predicted changes in maternal well-being, and initial levels and changes over time in maternal well-being predicted changes in behavior problems in the son or daughter.
Gael I. Orsmond et al
Background Behavioural and emotional problems occur at a high rate in children and adolescents with intellectual disability, often from a young age. Some studies have indicated that children and adolescents with autism present with even higher rates. Less is known about the presentation, development and family impact of these difficulties in young children with autism. This study aimed to explore these issues in toddlers with pervasive developmental disorders (PDDs), those with delay without a PDD, and their families. Methods Participants were 123 children aged 20-51 months, referred to a developmental assessment clinic. Parents completed a checklist on child behavioural and emotional problems, and individual questionnaires on family functioning, their own mental health, and stress in relation to parenting their child. The child's language and cognitive skills, adaptive functioning and behaviour were assessed by standardized measures. Measures were repeated 1 year postdiagnosis. Behavioural and emotional problems in young children with a PDD were compared with those in children with developmental delay without a PDD, and their impact on parental outcomes explored over time. Results Initial and follow-up measures of child behaviour and emotional problems, parent mental health problems, parent stress and family functioning were significantly correlated, providing some evidence of stability over time. Child emotional and behavioural problems contributed significantly more to mother stress, parent mental health problems, and perceived family dysfunction than child diagnosis (PDD/non-PDD), delay or gender. Compared with mothers, all fathers reported significantly less stress in relation to parenting their child. Conclusion Results highlighted the importance of addressing emotional and behavioural problems in very young children with autism and/or developmental delay. The need for early support and intervention for mothers, fathers and families in this context was also evidenced. As research has shown that behavioural and emotional problems persist into adolescence and young adulthood, understanding of these issues in very young children and their parents has important implications for intervention and long-term outcomes.
S. Herring et al
In this study, children with autism whose parents let them take the lead in interactions, who showed interest in and commented on the child's activities, and who played with their child based on the child's interests tended to have children who developed better verbal skills as they grew older.
M. Siller, Marian Sigman
When discussing their adult children, participants reveal strong desires for both autonomy and connection, leading to ambivalence about receiving assistance from them. They define themselves as independent but hope that children's help will be available if needed. They are annoyed by children's over protectiveness but appreciate the concern it expresses. They use a variety of strategies to deal with their ambivalent feelings, such as minimizing the help they receive, ignoring or resisting children's attempts to control, withholding information from children to maintain clear boundaries, seeking others as confidants, and rationalizing children's unavailability. They actively strive for a balance in their relationships with children.
Glenna Spitze, Mary Gallant
As I wrote to my son Tariq, 'I have tried so hard to change you, and in the end it was you who changed me. Instead of becoming the son I wanted you to be you made me become the man I needed to be.'
Robert Naseef
Nurit Yirmiya et al
The typical breaks that parents get because their children go to visit friends or are able to do things by themselves are often not an option. So families that are already under pressure have to spend more time supporting each other not less.
Results indicate that stress-related variables as possible predictors influencing caregivers' quality of life include: patient and caregiver characteristics, stressors, stress appraisal, stress coping methods, and social support.
Jung Won Lim, Brad Zibrack
The increased rates of uterine bleeding, prolonged labor, oxygen requirement, cesarean section, and low birth weight point to a prominent role of obstetrical complications in the development of PDD. Certain environmental exposures, such as tobacco, methylmercury from fish consumption, and other chemicals, may be involved, but further studies are needed to investigate the timing and amount of exposure to establish a link and between these agents and PDD. The data further supports studies noting the role of genetics in the development of PDD. The study supports previous publications, which noted no significant difference in parents? age at conception, education, and occupation. Thus, our results support the recent theory that development of a PDD is multi-factorial in nature and may be related to a number of factors.
Heather Hollingsworth et al, Chatham College
This paper examines methodological challenges inherent in conducting research on families of children with autism and in comparing these families with others who are coping with different types of disabilities or who have nondisabled children. Although most comparative research has contrasted families whose child has autism with those whose child has Down syndrome, the range of comparison groups can be expanded to offer additional points of contrast and control.
M.M. Selzer et al
Mothers of autistic children experienced more psychological distress than those of mentally retarded children. Our findings indicates that the assessment of autistic and mentally retarded children should include psychological assessment of their mothers.
Sunay Firat, Rasim Somer Diler, Ayse Avci, Gulsah Seydaoglu
Background Although coping with autism has been examined in a number of papers, virtually no research exists on how families cope over time. This paper reports the results of a longitudinal study of parents coping with autism over a period of approximately a decade. Methods The research method for the study was based on ethnographic methods that emphasized in-depth interviews and participant observation. The sample for this study consisted of 28 parents (19 mothers and nine fathers) of children with autism. The instrument for the interviews consisted of questions concerning: the child's medical history and referral experience, the child's present symptomatology, the effects of the child's problems on the parent's well-being, the effects of autism on the family's social life, parental coping strategies, illness conceptualization and the parents' expectations for the future. Results and conclusions Coping strategies changed from the time of the initial study, as fewer parents coped through reliance on service providers, family support, social withdrawal and individualism and relatively more parents coped through their religious faith and other emotion-focused strategies. The results tentatively support previous research on coping that indicates that aging is linked to the use of more emotion-focused coping strategies.
DE Gray
This study focused on the coping strategies of parents' with children with autistic spectrum disorders (ASD) and the relation between these strategies and parenting styles. Coping strategies were measured using the Sense of Coherence Scale (SOC) and the Purpose in Life Test (PIL-R). Parental attitudes toward loving care, stress, worry, and guilt feelings were assessed using the Family Impact Questionnaire. Two groups of participants were included: parents with children with ASD (EG) (n = 66) and a matched control group (CG) (n = 66). Paired Samples t-Test and Pearson's r correlation were used as methods of analysis. Main results distinguished significant (p < .001 to .003) differences between the EG and CG for almost all variables included. The M level of coping strategy was much higher for the CG than for the EG. SOC showed a stress-reducing effect in both the EG and CG. PIL-R explained 50% of the variance in SOC for the EG and 33% for the CG. The only significant gender difference in the EG was on SOC indicating a higher sense of coherence among the fathers and probably an indicator of a stronger burnout effect of the mothers.
B. Sivberg
Despite the theoretical and demonstrated empirical significance of parental coping strategies for the wellbeing of families of children with disabilities, relatively little research has focused explicitly on coping in mothers and fathers of children with autism. In the present study, 89 parents of preschool children and 46 parents of school-age children completed a measure of the strategies they used to cope with the stresses of raising their child with autism. Factor analysis revealed four reliable coping dimensions: active avoidance coping, problem-focused coping, positive coping, and religious/denial coping. Further data analysis suggested gender differences on the first two of these dimensions but no reliable evidence that parental coping varied with the age of the child with autism. Associations were also found between coping strategies and parental stress and mental health. Practical implications are considered including reducing reliance on avoidance coping and increasing the use of positive coping strategies.
Richard P. Hastings et al
Some daycare providers are unwilling to accept a child with a disability because of the specialized care or extra attention he or she may require, and often, because the providers have no experience in caring for children with disabilities.
Gale Jurasek, Exceptional Parent
This paper aims to help parents through the process of deciding what the best way or ways to help their child to become self-reliant. Parents are the child's strongest advocates. It is the key role of parents to have faith in their selection and efforts.
Cathy Tissot
It is argued that by intervening and changing developmental pathways, thedevelopment of parenting skills of those with intellectual impairments can be facilitated
Cindy McGaha
Be creative in your solutions, and don't worry about whether your family's way of coping is normal or not. If it works for you and harms no one, it's all right.
Mitzi Waltz
The present study examined spontaneous symbolic play, declarative joint attention, social referencing and imitation of symbolic play in 3- to 6-year-old children with an autism spectrum disorder (ASD; n= 20) during interaction with their mothers. Compared to a control group (n= 20) matched on age and IQ, the children with ASD initiated less joint attention with their mothers when confronted with a pleasant event and they showed a tendency to play less symbolically and more non-functionally. Contrary to expectations, children with ASD showed no social referencing or imitation deficits. Interestingly, two clusters of intercorrelating behaviours were found in the ASD group: one suggesting symbolic or metarepresentational abilities, the other comprising interpersonal behaviours. The findings support the hypothesis that early social communicative abilities may follow a different developmental pathway in ASD, and stress the importance of a contextual factor, namely the presence of the mother.
Petra Warreyn, Herbert Roeyers, Isabel de Groote
Mothers of adults with schizophrenia and autism had better psychological well-being when the mother/adult child relationship was positive, but this effect was mediated totally or partially by optimism. For all 3 groups, optimism was related to better mental and physical health. The findings highlight the importance of dispositional optimism, a psychological resource that has been virtually ignored in studies of family caregivers of adults with disabilities.
J.S. Greenberg et al
This study was a trial of an intervention programme aimed to improve parental self-efficacy in the management of problem behaviours associated with Asperger syndrome. The intervention was compared across two formats, a 1 day workshop and six individual sessions, and also with a non-intervention control group. The results indicated that, compared with the control group, parents in both intervention groups reported fewer problem behaviours and increased self-efficacy following the interventions, at both 4 weeks and 3 months follow-up. The results also showed a difference in self-efficacy between mothers and fathers, with mothers reporting a significantly greater increase in self-efficacy following intervention than fathers. There was no significant difference between the workshop format and the individual sessions.
Kate Sofronoff, Michelle Farbotko
This study examined the effect of child temperament, symptom severity, verbal ability and level of functioning on maternal stress in 43 Greek mothers of children and young people with autism spectrum disorder. Symptom severity was assessed by the CARS, level of functioning by the PEP, temperament by the Dimensions of Temperament Scale (DOTS-R) and maternal stress by the Clarke Modification of Holroyd's Questionnaire on Resources and Stress (QRS). Lower-functioning children and those with high activity level, low flexibility and low mood scores were perceived to be more stressful. Counter to expectation, children with ASD who were rated high on rhythmicity and task orientation were perceived as more stressful. Best predictors of maternal stress were high activity level, low mood and high symptom severity. Mothers of non-verbal children were more stressed than those of verbal. The relevance of child temperament for understanding maternal stress is discussed with particular relevance to the Greek culture and available supports.
MM Konstantareas
This paper reports the results of a study of felt and enacted stigma among a sample of parents of children with high functioning autism. The results indicate that a majority of the parents experienced both types of stigma, but that mothers were more likely to do so than fathers. This was especially true in the case of enacted stigma, where a majority of mothers, but only a minority of fathers, encountered avoidance, hostile staring and rude comments from others. The child's type of autistic symptoms was also related to the stigmatisation of their parents, with parents of aggressive children more likely to experience stigma than the parents of passive children.
David E. Gray
...parents' difficulties in understanding their child's behaviours and the confusion that resulted from their inability to make sense of these behaviours, and problems in obtaining a diagnosis. The findings also reflect parents' experience of relief after the correct diagnosis was made. This appeared to enable them to understand and accept autism and the limitations imposed on their child; to improve adaptation to the condition within the family life; and to foster more realistic expectations of their child's future.
Kenny Midence, Meena O'Neill
We hypothesized that adult children's failure to achieve and maintain normative adult statuses and financial independence, and mother's developmental stage will predict ambivalent assessments of the relationship. Regression analyses supported these hypotheses and also revealed that the variables predicting ambivalence differed from those that predicted closeness and interpersonal stress.
Karl Pillemer, J. Jill Suitor
A survey of parents/caregivers of a child with an autism spectrum disorder (ASD) was conducted to examine the relationship between ASD characteristics, family functioning and coping strategies. Having a child with ASD places considerable stress on the family. Primary caregivers of a child with ASD from a regional and rural area in Victoria, Australia (N = 53) were surveyed concerning their child with ASD, family functioning (adaptability and cohesion), marital satisfaction, self-esteem and coping strategies. Results suggest that these caregivers had healthy self-esteem, although they reported somewhat lower marital happiness, family cohesion and family adaptability than did norm groups. Coping strategies were not significant predictors of these outcome variables. Results highlight the need for support programmes to target family and relationship variables as well as ASD children and their behaviours, in order to sustain the family unit and improve quality of life for parents and caregivers as well as those children.
Daryl J. Higgins et al
The objective of this case-control study was to investigate the determinants of maternal stress in mothers of children with autism. Mothers of 31 children with autism from mental health clinics were matched by child age/gender and mother age to 31 mothers of children without mental health problems, drawn from public schools and a primary care unit. Logistic regression models showed that the presence of stress in mothers was primarily associated with having a child with autism. However, poor expression of affect, little interest in people, being an older mother, and having a younger child also contributed to increased stress levels. Although having a child with autism was the main factor responsible for stress, the presence of the other factors further increased maternal stress. The implication is that a subgroup of mothers of children with autism is more prone to experience stress, thus requiring special attention from mental health professionals.
Cristiane S. Duarte, Isabel A. Bordin, Latife Yazigi, Julia Mooney
Mothers' perceptions of the child as a source of personal growth and maturity were also positively associated with reframing coping strategies, the helpfulness and usefulness of support from family and friends, and the caregiving demand.
Richard P. Hastings, Rachel Allen, Kellyanne McDermott, Danielle Still
Mothers of adult children with autism tend to be less depressed and anxious than mothers of adolescents with the neurological disorder. Many parents believe service options do not address the needs of their children,
It is the spouses and the siblings and the children of those afflicted with AS whom we are trying to reach. Especially those whose relative has not been correctly diagnosed with AS until well into their adulthood.
Social Reproduction, Education and the Family; Family Processes in the United States; Family as Educator; State of the Family in the American State.
Hervé Varenne
The family takes on many roles in health issues. It can be the cause, or at least a major factor, in the illness or well-being of its members. Inside the family, habits are formed and healthy or unhealthy behaviour is learned.
Sirpa Taskinen
Offers learning solutions in five separate but interrelated resource areas, each served by the Learning Network Store: K-12, Higher Education, Professional Development, Lifelong Learning, Reference Channel.
Certain subgroups of children such as those within the autism spectrum pose special relationship challenges, whereas those with sensory impairments require families to become knowledgeable about technical supports for their children.
Michael Guralnick
Our mission is to celebrate and support fathers and families raising children with special health care needs and developmental disabilities.
The family of a disabled or chronically ill child knows a great deal about the child and the child's condition. Parent-physician partnerships that make full use of family resources lead to healthier patients, happier parents, and satisfied pediatricians.
Sara Hamel, Heidi Feldman
Parents of children with autism, bipolar disorder, schizophrenia, severe retardation, or a witches' brew of other syndromes and disorders can barely tread water. They struggle to keep their heads up, running out of breath and patience as they watch their families slowly drown. Many spend themselves into bankruptcy and find out health care plans that cover "normal" diseases and injuries don't cover bills to treat mental illness.
Peter Bronson, Cincinnati Enquirer
If the skills and behavior of the autistic child improve, experts say, parents and siblings have more choices of leisure and other activities, and less sense of stigma and isolation.
Jane Gross, New York Times
Pity is a negative emotion—it is always destructive. Our children can accept some blows from the system and survive. Ultimately, children grow and flourish by facing adversity—if they know that we understand them, support them, and believe in them!
Pamela Darr Wright
The children in this study offered recommendations including to "get help earlier," "go to counseling," "gain your feelings," "communicate," "find somebody you can trust," "just have friends," and above all, "kids need to know that it's not their fault." These recommendations call for increased interpersonal support, coping skills development, and information about psychiatric disabilities and psychiatric rehabilitation.
Joanne Riebschleger
These 'imperfect' children born to loving parents who struggle to rise from disappointment to find a stronger love--a more perfect love that lies on the other side of sorrow.
Robert Naseet
The families of 26 adults with autistic spectrum disorders (ASDs) who either lived at home or maintained close contact with their families were interviewed about their social and psychological needs related to caring for the person with ASD. In contrast to previous studies of familial carers of children with ASDs, a strong association between parental emotional distress and unmet need was found. Parents also reported a need for more autism-specific intervention and support for adults with ASDs. The study illustrates the continuing and underreported role of families in supporting adults with ASDs.
Dougal Julian Hare et al
The estimated prevalence rate of Pervasive Developmental Disorders (PDD) in children is 6 per 1 000. Parenting children who are intellectually impaired and have PDDs is known to be linked to the impaired well-being of the parents themselves. However, there is still little available data on health-related quality of life (HRQL) in parents of children with Asperger Syndrome (AS) and High-Functioning Autism (HFA), or other PDD diagnoses in children of normal intelligence. The present study aimed to evaluate aspects of HRQL in parents of school-age children with AS/HFA and the correlates with child behaviour characteristics. The mothers of children with AS/HFA had lower SF-12 scores than the controls, indicating poorer physical health. The mothers of children with AS/HFA also had lower physical SF-12 scores compared to the fathers. In the AS/HFA group, maternal health was related to the levels of social competence, and coexisting behaviour problems such as hyperactivity and the child's conduct problems. Mothers but not fathers of children with AS/HFA reported impaired HRQL, and there was a relationship between maternal well-being and child behaviour characteristics.
Hiie Allik et al
As persons with severe and persistent mental illness age, large numbers continue to live with their elderly parents or receive substantial social and economic support from them. Prospective studies suggest that when caregivers die, individuals with mental illness experience housing disruptions and potentially traumatic transitions. This paper describes the scope of the problem and addresses pragmatic and psychological issues involved in preparing both caregivers and patients for parental aging and eventual loss.
Harriet P. Lefley, Agnes B. Hatfield
One of the most important things that a person with a chronic illness can do, whether they have an Autistic child or not, is to take care of their own health first.
Adelle Jameson Tilton
Relatives experienced enormous burden because of being intensely involved in patient care. Burdens were strongly positively related to family conflicts... particularly important to Chinese because of intense involvement of more than 1 member in caregiving
Winnie W. Kung
There are also advantages to autism and a person with autism can display such traits as attention to detail, punctuality and a clear adherence to rules, all of which are attractive to employers.
There's a big difference between chatting with your child in order to build her vocabulary and striking up a conversation just because you like her company.
Tamara Eberlein
Participants reported receiving significantly less support from their organised religion than from their personal beliefs. Higher scores on support from personal beliefs, particularly the use of prayer, were associated with better health.
Patricia Coulthard, Michael Fitzgerald
Journal of Autism and Childhood Schizophrenia 1971 Jul-Sep;1(3):311-26
John Allen
BACKGROUND: Autistic disorder (AD) is a disabling oligogenic condition characterized by severe social impairment. Subthreshold autistic social impairments are known to aggregate in the family members of autistic probands; therefore, we conducted this study to examine the intergenerational transmission of such traits in the general population. METHODS: The Social Responsiveness Scale (SRS), a quantitative measure of autistic traits, was completed on 285 pairs of twins (by maternal report) and on their parents (by spouse report). RESULTS: Correlation for social impairment or competence between parents and their children and between spouses was on the order of .4. In families in which both parents scored in the upper quartile for social impairment on the SRS, mean SRS score of offspring was significantly elevated (effect size 1.5). Estimated assortative mating explained approximately 30% of the variation in parent SRS scores. CONCLUSIONS: Children from families in which both parents manifest subthreshold autistic traits exhibit a substantial shift in the distribution of their scores for impairment in reciprocal social behavior, toward the pathological end. As has been previously demonstrated in children, heritable subthreshold autistic impairments are measurable in adults and appear continuously distributed in the general population.
J.N. Constantino et al
The authors argue that a theoretical model is needed that relates caregiver stressors to illness and proffers moderating roles for vulnerabilities and resources and mediating roles for psychosocial distress and health behaviors.
Peter P. Vitaliano et al
We moved this weekend. That may not sound like a problem for most people, but when you're the parent of a child with autism, it becomes an almost overwhelming task.
Floyd Tilton
The Kansas Inventory of Parental Perceptions (KIPP) was designed to measure four domains of perceptions among parents who have children or adult sons and daughters with disabilities: 1. Positive Contributions: Perceiving that the family member with a disability is a source of positive contributions. 2. Social Comparisons: Comparing oneself, one's family, and/or the family member with a disability with similar or dissimilar others. 3. Causal Attributions: Attributing the family member's disability to a particular cause or reason. 4. Master/Control: Perceiving that one has control over the situation or the power to influence outcomes for the family member with a disability.
S.K. Behr et al
"Jason is the best Jason he can be, and that's all we ever want for him," says his father, Michael. But they realize that there might come a time when Michael and Debbie will not be there for Jason as he grows into manhood, middle-age and beyond, and they need to do their best to see that he will be all right, that he will be cared for. And they will do whatever it takes.
Michael Riley, Asbury Park Press
Information for military families on services to families with special needs children.
If you can pull it off, you will have accomplished something truly remarkable. She may understand what learning a different way is like. In your patience and love for her, she will begin to experience a new kind of identity for which she is truly the person in charge. By doing so, it may be possible for both of you to separate when the time comes, mother from daughter, and later to reconnect friend to friend in a way different than when you parted. Done well, the fallow time between release and return could be quite short. Maybe the most unexpected thing may occur: she will know that despite the past, it is possible to change, and through the doing, to think of herself as a candidate for a different kind of adulthood and motherhood.
Roger N. Meyer
Findings indicated that over half of mothers screened positive for significant psychological distress and that this was associated with low levels of family support and with bringing up a child with higher levels of challenging behaviour. Mothers were more likely to report lower levels of support if they were a lone parent, were living in poor housing, or were the mother of a boy with ASD.
Jo Bromley et al
Post hoc stepwise regression analyses revealed that Life Orientation, Social Resources, and Age were significant predictors of Psychological Well-Being. In turn, Life Orientation, Social Resources, and Health Risk were significant predictors of Psychological Distress.
Evangeline Marie Kopp
Children may be at risk in the family where there is potential for what we shall call organic child maltreatment. This is the result of maltreatment of a child where there is parental autism or other organic impairment.
Sheila Jennings Linehan, Jan Schloss
Analysis of the Family Fund Trust database, which records grant applications to the government-funded Trust from families with severely disabled children, has provided the first estimates of the number of families in the United Kingdom who have more than one disabled child. The analysis has also provided evidence that these families have additional disadvantages compared with families with one disabled child. Secondary analysis of data from a national survey of over 1,000 families with one or two severely disabled children confirms and adds to that evidence.
There are growing numbers of older parents caring for adult sons/daughters with lifelong disabilities.They experience changes in their caregiving needs,routines,and patterns as both the caregivers and care receivers grow older. These families often find themselves facing increasing demands while experiencing diminishing resources of health, income and social support.
Marlene MacLellan et a;
We lost the baby we thought we had. And then we were faced with understanding what had happened and bonding anew.
Bob Naseef
The effects of a parental training program involving three one-day group parent training were evaluated. The training focused on (1) addressing issues of the nature, etiology, and treatment of autism, (2) teaching child management and education skills, (3) discussing family roles and family coping strategies. A total of 24 parents of 23 autistic children participated in the center-based training program, which was performed in three small groups in three different areas of Germany in 1998. The mean age of the children was 8.9 years. The outcome variables included: (a) group training assessments by parents; they evaluated quality of the curriculum, therapist variables, and group atmosphere, using a self-administered Likert-type-questionnaire format, (b) parental 3-month follow-up assessments of the effects of group training on parent-child interactions and family adaptation, using two self-administered Likert-type questionnaires and a semi-structured parent diary. The parent training resulted in (a) a high degree of parental satisfaction with the training format and (b) positive effects on daily parent-child interactions. These findings provide some evidence for the clinical and social validity of the family intervention method examined in this study.
Paul Probst
From what I have seen at work, the siblings of the autistic children take responsibility for their brother/sister and at the same time do not truly understand why their brother/sister can't do such things for him/herself.
Allison Carter
Families face many challenges. Parents' participation in their children's education is largely peripheral. Most educational programs are tragically deficient.
Martin Kozloff, John Rice
The manner in which parents adapt to the experience of caring for a child with an intellectual disability is generally thought to depend upon a range of variables typically conceptualized within multi-dimensional models. This review briefly describes three such models that share significant common features, incorporating child variables, environmental characteristics, and parental cognitive processes as contributors to parental coping styles or parenting stress. The effects of child and environmental characteristics on parenting stress and coping in parents of children with disabilities have been well documented. It is argued, however, that some aspects of cognitive processes in parents of these children have received less attention from researchers. In particular, there has been a large amount of research into parenting self-esteem, parental attributions, and parental locus of control with parents of other groups of children. This research is reviewed, and it is argued that further research into similar cognitions in parents of children with intellectual disabilities is warranted. Finally, the potential clinical implications of such research are examined in relation to behavioural interventions for children's behavioural difficulties. It is suggested that parental cognitions may influence the acceptability of such interventions and also be associated with their effectiveness.
Richard Hassall, John Rose
The question underlying parents' perception of the development of autism in their children is the larger question of the construction of all parents' belief systems about their children. Whether they are termed beliefs, thoughts, constructs, theories, ideas, goals, orperceptions, all adults have cognitions about children. This inquiry is grounded in a constructivist theory of communication that suggests meaning is constructed and not inherent or objective or given. Scientists in this field share a central conviction that parental cognitions do matter, in ways that are both direct and indirect. They matter in how children are raised and in children's own experiences of life.
Robin Goin, Virginia Commonwealth University
Previous research on early intensive intervention in autistic spectrum disorder (ASD) has largely focused on outcomes of treatment for children. Although some account has been taken of parental viewpoints, the potential impact of intervention on families has not achieved the same kind of research prominence.
Alec Webster et al
Journal of Autism and Childhood Schizophrenia. 1972 Jan-Mar;2(1):49-66
Marian K. DeMyer
Reducing parental stress may have an indirect beneficial effect on the child's behaviour by improving the quality of parenting behaviour.
Richard Hastings
Parent self-report, 101-item questionnaire, designed to identify potentially dysfunctional parent-child systems.
Journal of Autism and Childhood Schizophrenia 1971 Jan-Mar;1(1):87-102
Eric Schopler
Some children with autism and learning disabilities also have aberrant behaviours that are difficult to regulate and stressful for both the child and family members. This case study concerns experiences of 10 parents from five families before and 2 years after entrusting their 10- to 11-year-old child with autism to a group home. Hermeneutic phenomenological analysis of narrative interviews with the parents before the child's moving showed them experiencing grief and sorrow, total exhaustion because of inability to regulate their child's behaviours, social isolation, and negative effects on the child's siblings, but experiencing themselves as more sympathetic than previously towards other people with problems. Two years later they experienced relief for the family due to the group home arrangement and the child's improvement, but with an ethical dilemma which made them feel guilty, despite increased hope for the future. Some also felt unhappy with the staff situation at the group home.
Y. Benderix et al
These families conveyed to others that the disability was just one more characteristic of the person rather than the only one. By openly discussing their children's strengths and needs, the parents contributed to reducing the disability stigma.
Ann Turnbull et al
The present results, and these anecdotes, suggest that autism and AS may constitute a particular cognitive style, rather than an impairment... The style seems to involve deficits in mindreading in the presence of superior processing of local information.
Simon Baron-Cohen, Jessica Hammer
Parents of children with autism have difficulties obtaining adequate information and support to guide them in the care of their children. However, the growth of communication technologies such as email has created greater opportunities for accessing such resources. This article presents a grounded theory analysis of the messages sent to an email group by parents of children with autism. The core category emerging from the analysis indicates that the group functioned in making sense of autism. The core category comprises four categories: searching for meaning; adjusting to changes; providing support and encouragement; and narrative sharing of experiences. Although email groups function as a social support mechanism, we suggest that this is not the only legitimate function: such groups may contribute towards the development of parental representations of autism.
Jaci Huws et al
The results of this study indicate that parents who are primary caregivers for a child with a chronic disability could express positive aspects about what is happening to them. These results reinforce earlier findings that showed that caregiving can be a rewarding experience, one which gives meaning and enrichment to the parents' lives and heightens their sense of self-worth.
Chaya Schwartz
Parenting young children with pervasive developmental disorder engenders unique sustained stresses, which have been termed "burden of care." One specific source of stress for parents is the children's uneven developmental progress, in which delays and accelerations of adaptive functioning may exist side by side. This paper proposes a clinical method that may be incorporated into periodic child psychiatric consultations with parents of young children who have high-functioning autism or Asperger's disorder. Using a semistructured technique, the clinician reviews with the parents the details of the child's recent developmental course and attempts to identify emergent skills that may serve to preview upcoming developmental issues and gains. This method is aimed at enhancing parental abilities to track and anticipate developmental progress and the resultant shifts in the parent-child relationship, in order to reduce one source of sustained parental stress. Case illustrations of children ages 2-8 years old are discussed in light of recent literature on adaptive issues in families of individuals with a chronic medical or psychiatric condition and, specifically, families of children with pervasive developmental disorder.
P. Schuntermann
As with all human endeavor, a family's interpretation of the meaning of disability cannot help but reflect to some degree the larger context of social attitudes and historical realities within which that interpretation emerges.
Philip M. Ferguson
Older parents of adults with long-term mental illness need professional help with planning for their offspring's future. This assistance should focus on mechanisms such as estate planning to enable case management and other services after parents' death. The involvement of nondisabled siblings in planning should also be encouraged.
Gregory C. Smith et al
These are the families who roll up their sleeves and get on with the task of finding the best available services for their child: who both accept the reality of the disability and are able to love the child for who he or she is...
Jean Ann Summers, Shirley K. Behr, Ann P. Turnbull
Families who have a member with a disability have long been objects of pity. Society as a whole tends to view the presence of a child with a disability as an unutterable tragedy from which the family may never recover... But there are other families who do quite well, with or without interventions from service providers.
Jean Ann Summers et al
The aims of this article were to test the psychometric properties of the Positive Contributions Scale (PCS), and to compare perceptions of positive contributions reported by mothers and fathers. Participants were 140 mothers and 60 fathers of children with intellectual disabilities. Results supported the reliability and construct validity of the PCS. Internal consistency was good for all subscales bar one, and the PCS total score was associated with scores on the Positive Affect Scale. There were differences on PCS scales for mothers and fathers, with mothers generally reporting more positive contributions than fathers. The PCS is a reasonably robust measure and its use in future research should help to address questions about the nature and function of parental positive perceptions. The PCS might also be used in applied settings to help balance the effects of asking families about their difficulties and support needs.
Richard P. Hastings et al
Families that have adapted successfully to their child with a disability are likely to demonstrate some positive perceptions and report positive experiences. Exposure to others' positive outlook may facilitate family adaptation.
Helen Taunt, Richard Hastings
Although typically reporting more stress than do families of children without disabilities, families of children with disabilities do not seem to report fewer positive perceptions.
Richard Hastings, Helen Taunt
Perceptions are the ways we view things in our lives. Changing the way you think about a challenging event may help you feel better about that event. We know there are four types of perceptions that can make you feel better and improve your family's functioning. The view that your child's special needs exist because of some specific cause or reason. The view that you can control some things that happen in the life of your child with special needs. The view that your situation -- when compared with that of another individual -- is better than that of the person you compared yourself with. The view that your child with special needs contributes in a good way to your family and others.
A.P. Turnbull et al
Once type of comparison group (e.g., Down Syndrome, learning disabilities) and method of assessing psychiatric difficulties (e.g., self-report, clinical measures) were taken into account, different findings were yielded for the various comparison groups and methods of assessing psychiatric difficulties in parents suggesting that parents of children with autism present more psychiatric difficulties mostly in comparisons involving samples of parents of children with no known genetic risk (e.g., Down Syndrome).
Nurit Yirmiyam, Michal Shaked
Mothers of individuals with fragile X syndrome displayed lower levels of well-being than those of individuals with Down syndrome, but higher levels than mothers of individuals with autism, although group differences varied somewhat across different dimensions of well-being. The most consistent predictor of maternal outcomes was the adolescent or young adult's behavioral symptoms.
L. Abbeduto et al
Background Research on parental well-being has focused largely on Down syndrome and autism; however, fragile X syndrome is likely to pose different challenges for parents compared with these other diagnostic conditions. Moreover, there is considerable variability among youth with fragile X syndrome; for example, 25% to 33% of affected youth meet criteria for a co-morbid diagnosis of autism. It is likely that parents of youth with fragile X syndrome will experience different degrees and patterns of stress, depending on whether their offspring do or do not have a co-morbid diagnosis of autism. In the present study, we compared mothers of three groups of young males on measures of psychological well-being and stress: those with fragile X syndrome and a co-morbid diagnosis of autism; those with fragile X syndrome alone; and those with Down syndrome. Method The sample consisted of mothers of adolescent and young adult males with fragile X syndrome and co-morbid autism (n = 9), fragile X syndrome alone (n = 19), and Down syndrome (n = 19). We screened all youth for autism using the Autism Behavior Checklist, which was completed by mothers, fathers and teachers, and the youth who scored above the suggested cut-off were evaluated by a licensed psychologist to determine autism status. The three groups of youth did not differ in chronological age (16.4, 15.8 and 16.0 years, respectively) or non-verbal mental age (3.8, 3.9 and 3.8 years, respectively). Several self-report measures were completed by mothers. These measures assessed current mental health status (e.g. the Center for Epidemiological Studies Depression Scale), perceptions of their son's and family's functioning (e.g. the Positive Affect Index, which measures closeness felt by the mother to her son and also reciprocated closeness felt by the son towards the mother, as perceived by the mother), and approach to coping with their son's disability [e.g. the Multidimensional Coping Inventory (COPE), which measures emotion-focused and problem-solving focused coping]. Results The results suggest that fragile X syndrome creates more challenges to maternal psychological well-being than Down syndrome, and that the combination of fragile X syndrome and autism can be particularly challenging. Differences among groups, however, were manifested mainly as concerns about the affected son and about relationships within the family rather than as lower levels of mental health. Thus, mothers of sons with fragile X syndrome, regardless of the son's autism status, reported more pessimism about the son's future and more conflict within the family than mothers of sons with Down syndrome. Additionally, mothers of sons with fragile X syndrome and co-morbid autism reported lower levels of reciprocated closeness than the other two groups of mothers. Conclusion We consider possible causes of these maternal differences, the implications for clinical practice, needs for future research, and the importance of understanding child and contextual factors as well as the dynamics leading to these differences.
P. Lewis et al
Although considerable research exists concerning families raising children with disabilities, relatively little work has examined the linkages between parent and sibling functioning. The purpose of this study, therefore, was to investigate the relationship between parental perceptions of family functioning and school-aged siblings' social skills and problem behaviors. A purposive sample of 78 sets of parents and their school-aged children participated. Half of the families were raising a child with a disability, and half of the families were not raising a child with a disability. Mothers and fathers completed the Porter-O'Leary Scale and Bloom's Family Functioning Measure. Teachers of the school-aged children completed a modification of the Gresham and Elliot Social Skills Rating System. Results indicated siblings of both groups demonstrate more social skills than problem behaviors, and siblings of children with disabilities were higher in cooperation and self-control than siblings of children without disabilities. Hierarchical regression analyses revealed fathers' perceptions of family conflict and external locus of control orientation, and mothers' perceptions of marital conflict predicted externalizing behaviors for female siblings of children with a disability.
Barbara Mandleco et al
Together you and your partner dreamed of a healthy child - now you face a life very different from what you imagined. Your overwhelming feelings, both individually and combined, are normal and natural in the situation but very difficult nonetheless.
Cindy N. Ariel, Robert Naseef,
Family stress and coping theory and cognitive adaptation theory were used as a framework to develop measures for the assessment of perceptions and to investigate their relationship to successful coping outcomes. Over 1,200 birth parents, foster and adoptive parents, and legal guardians of children with disabilities participated in the national construct validity study. Factor analysis identified the underlying dimensions of four perceptions associated with cognitive adaptation. Additionally, data revealed variability in perceptions, stress, and well-being, with participants reporting stress and well-being levels similar to those of adults in the general population.
S.K. Behr
Because of the additional care required by a child with autism, families identify respite care as a basic need, with the need increasing as the child gets older.
National Resource Center for Respite and Crisis Care Services
BACKGROUND: Executive dysfunctions have been studied as a potential endophenotype associated with the genetic basis of autism. Given that recent findings from clinical and molecular genetic studies suggest that autism and obsessive-compulsive disorder (OCD) could share a common pattern of heritability, we assessed executive functions as a possible common cognitive endophenotype in unaffected family members of individuals with either autism or OCD. METHODS: Five tests assessing executive functions (Tower of London, verbal fluency, design fluency, trail making and association fluency) were proposed to 58 unaffected first-degree relatives (parents and siblings) of probands with autism and 64 unaffected first-degree relatives of OCD patients. Results were compared with those of 47 healthy controls matched for age, sex, and level of education. RESULTS: In the Tower of London test, both groups of unaffected relatives showed significantly lower scores and longer response times compared with controls. No differences were observed between autism and OCD relatives and healthy controls in the four other tasks (verbal fluency, design fluency, trail making test and association fluency). CONCLUSIONS: Our findings show the existence of executive dysfunction in the unaffected first-degree relatives of probands with OCD, similar to those observed in the relatives of patients with autism. These results support and extend previous cognitive studies on probands indicating executive dysfunctions in autism and OCD. Planning and working memory processes could thus represent a common cognitive endophenotype in autism and OCD that could help in the identification of genes conferring vulnerability to these disorders.
R. Delorme et al
Ambivalent feelings develop during the first year and four stages can be described: "Wish for the baby to survive or to die"; "Love the baby or hate Down syndrome"; "confused by the baby"; "keeping the parts together."
Bim Riddersporre, Karin Stjernqvis
The Schneiders will never have a typical kid, and that's forced them to re-evaluate everything about parenting: their expectations, hopes and techniques. As part of an occasional series profiling real parents, the Schneiders opened their home to The Times for a day to share the challenges and rewards of parenting two children who have developmental disabilities but completely different needs and demands. They forfeited what they once considered a "normal" family, home and life, but, "I don't want people to think my life is so awful or tragic," Cathy said. "They're a lot of work, but there's a lot of joy from having them. I still love them just as much."
Stephanie Dunnewind, Seattle Times
Strong evidence from previous research indicates that the caregiving role is very demanding, is frequently distressing, and may be harmful to health and injurious to one's quality of life. The addition of a community that is perceived to be rejecting makes life even more difficult for the caregivers and families of people with serious mental disorders. The development and implementation of effective interventions to create more supportive and understanding communities would be a challenging and worthwhile endeavor.
Elmer L. Struening et al
Sources of stress include : deficits and behaviors of autism; reactions from society and feelings of isolation; concerns over future caregiving; finances; feelings of grief;
Withdrawal and overinvolvement; Burnout and respite; Resentment; Genetic blame; Parental neuropsychiatric problems; Siblings; Lack of family support; Community isolation; Financial problems; Family therapy; Separation and divorce; Single parents, etc.
Mitzi Waltz
This paper describes a local education authority project to provide support to the families of preschool children with autistic spectrum disorders. As part of an evaluation study, all parents were interviewed when their children entered full-time education and left the service's caseload. The report outlines key findings regarding levels of satisfaction with the service provided and describes parental responses to the different components of the support offered. All parents rated the input of the support worker as 'very useful'. Parents particularly valued the following: support to 'make sense' of their child's development and needs; practical strategies for facilitating language and engaging in interactive play; and support to the nurseries and playgroups attended by their children. The interviews also looked at parents' experience of diagnosis and their needs in the immediate aftermath. Key implications of these findings, and of this model of service delivery, are also discussed.
Philip Whitaker
We conducted a postal survey of parents whose child had been diagnosed with an autistic spectrum disorder by a district diagnostic service. The service was regarded as having improved significantly following recent changes, but there were still shortcomings. Parents had obtained useful information from a range of other sources, including a parents' support group, school teachers, speech and language therapists, educational psychologists, the Internet, books and academic journals. Special units and schools were rated as the most useful source of support and treatment, but many other interventions were rated highly. Parents reported a diverse range of both negative and positive consequences of diagnosis, and many reported a change in their attitudes to diagnosis over time. Many expressed frustration with trying to get an early diagnosis, with the social, educational and health services, and with the way that autistic spectrum disorders are regarded by laypeople and other parents.
Warren Mansell, Kathleen Morris
Usually with Asperger's, the boys get all the attention. However, one in five people with AS are women. My daughter and I are two of them.
Susan Shanfield
He isn't stubborn, he's consistent. He isn't volatile, he's passionate. He isn't obsessive, he's neat. I am not cranky; I'm the mother of three sons. -- K.C.
Autism National Committee
if you want to avoid rushing from disaster to disaster, you must have a proactive parenting style. Avoid conflict, redirect behavior, and always be on the lookout for an alternative solution to behavior problems.
Mitzi Waltz
No matter how severely autistic your child seems to be, there is a very good chance that he or she can still be happy or find happiness and you can share in that happiness once you realize that being autistic doesn't equate to being miserable. Your job as a parent is to help your children and help them in their pursuit of happiness whatever that may mean to them. Don't assume happiness means the same thing it means to you. Many parents fall into that pitfall whether their children have a diagnosis or not.
Get as accurate and thorough a picture as you can of your child's special needs; get detailed information about potential schools; should you go overseas at all?; the application process; going to the next post or going home again.
Advisory Committee on Exceptional Children, U.S. Department of State
This paper describes approaches to care and associated service use by families with a child with autism. A combined telephone and self-administered survey was completed by 301 families with a child, 8 years old or younger, in North Carolina, during the winter of 2003-2004. Findings indicate that 66% of families used one or more approach to care and there was a significant (p < 0.05) association between approach and the pattern of service use. There appears to be a distinctive set of services associated with each approach to care, but with overlap between them. Speech/language therapy at school was the most frequently used service and also identified as the best service. The majority (81%) of families reported they were satisfied with services.
KC Thomas et al
The Questionnaire on Resources and Stress (Friedrich, short form: QRS-F) has been used widely with parents of children with disabilities. However, its psychometric properties in parents of young children with autism have not been established. Here, 174 mothers and 43 fathers of children under 6 years with autism spectrum disorder were studied by two independent research teams. Each parent completed a 31-item version of the QRS-F. Factor analysis of the mothers' scores on these items failed to identify an expected two- or three-factor structure. Thus, the properties of a total stress score were explored. Analyses revealed evidence of good reliability, and expected associations with social support, coping and autism severity. These analyses lend preliminary support to the convergent validity of the scale. Overall, the data support the use of a total stress score from the 31-item version of the QRS-F in research with parents of young children with autism.
Emma Honey et al
When I talk about knowing about autism here, I don't mean being able to regurgitate what experts have hypothesized, but actually having a working idea of how autistic people (plural, not extrapolated from one person) develop and experience the world. Having a relative who is disabled doesn't give you automatic insight into disability politics, and having a relative who is autistic doesn't give you automatic understanding of autism no matter how well you know them or think you know them.
The writer, who is also a psychologist, explores the agonizing decision to seek a residential placement which is currently unpopular but sometimes necessary.
Robert Naseef,
I've learned that raising a child with autism can be extremely difficult at times, no doubt about it, but I've also come to realize that it is only as difficult as you perceive it to be. It's not the autism that is so overwhelming, it's how parents react to it. It's easy to feel self pity and think about all of the things your child will never learn to do, how different your life will be from the life you had imagined, worry if you'll have the strength to raise a child like those portrayed on autism organization websites, and all of the other unanswerable questions that occupy your thoughts every time you see your autistic child. It's easy to be consumed by these thoughts when the media (including the internet) is filled with so much negativity but it doesn't have to be that way.
Not Mercury

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