Pediatricians have an important role not only in early recognition and evaluation of autism spectrum disorders but also in chronic management of these disorders. The primary goals of treatment are to maximize the child's ultimate functional independence and quality of life by minimizing the core autism spectrum disorder features, facilitating development and learning, promoting socialization, reducing maladaptive behaviors, and educating and supporting families. To assist pediatricians in educating families and guiding them toward empirically supported interventions for their children, this report reviews the educational strategies and associated therapies that are the primary treatments for children with autism spectrum disorders. Optimization of health care is likely to have a positive effect on habilitative progress, functional outcome, and quality of life; therefore, important issues, such as management of associated medical problems, pharmacologic and nonpharmacologic intervention for challenging behaviors or coexisting mental health conditions, and use of complementary and alternative medical treatments, are also addressed.

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Management of Children With Autism Spectrum Disorders

The psychological well-being of mothers raising a child with a developmental disability varies with the nature of the disability. Most research, however, has been focused on Down syndrome and autism. We added mothers whose adolescent or young adult son or daughter has fragile X syndrome. The sample was comprised of mothers of a child with fragile X syndrome (n 5 22), Down syndrome (n 5 39), or autism (n 5 174). 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.

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Psychological well-being and coping in mothers of youths with autism, Down syndrome, or fragile X syndrome

Background The study examined the profile of stress in mothers and fathers of preschool children with autism, Down syndrome and typically developing children. A further aim was to assess the association between parenting stress and coping style.

Methods  A total of 162 parents were examined using Holroyd's 66-item short form of Questionnaire of Resources and Stress for Families with Chronically Ill or Handicapped Members and the Coping Inventory for Stressful Situations by Endler and Parker.

Results and Conclusions  The results indicated a higher level of stress in parents of children with autism. Additionally, an interaction effect was revealed between child diagnostic group and parent's gender for two scales of parenting stress: dependency and management and limits of family opportunities. Mothers of children with autism scored higher than fathers in parental stress; no such differences were found in the group of parents of children with Down syndrome and typically developing children. It was also found that parents of children with autism differed from parents of typically developing children in social diversion coping. Emotion-oriented coping was the predictor for parental stress in the samples of parents of children with autism and Down syndrome, and task-oriented coping was the predictor of parental stress in the sample of parents of typically developing children. The results strongly supported earlier findings on parenting stress in parents of children with autism. They also shed interesting light on the relationship between coping styles and parental stress.

Parenting stress and coping styles in mothers and fathers of pre-school children with autism and Down syndrome.

Parental depression was assessed using the Beck Depression Inventory (BDI) in 216 families with children with autism and/or intellectual disability (ID), and in 214 control families. Mothers with children with autism had higher depression scores (mean = 11.8) than mothers of children with ID without autism (mean = 9.2), who in turn, had higher depression scores than fathers of children with autism (mean = 6.2), fathers of children with ID without autism (mean = 5.0), and control mothers (mean = 5.0) and fathers (mean = 4.1). Forty-five per cent of mothers with children with ID without autism and 50% of mothers with children with autism had elevated depression scores (BDI > 9), compared to 15-21% in the other groups. Single mothers of children with disabilities were found to be more vulnerable to severe depression than mothers living with a partner.

https://onlinelibrary.wiley.com/doi/pdf/10.1046/j.1365-2788.2001.00372.x

Depression in mothers and fathers of children with intellectual disability

Raising a child with an autism spectrum disorder (ASD) can be an overwhelming experience for parents and families. The pervasive and severe deficits often present in children with ASD are associated with a plethora of difficulties in caregivers, including decreased parenting efficacy, increased parenting stress, and an increase in mental and physical health problems compared with parents of both typically developing children and children with other developmental disorders. In addition to significant financial strain and time pressures, high rates of divorce and lower overall family well-being highlight the burden that having a child with an ASD can place on families. These parent and family effects reciprocally and negatively impact the diagnosed child and can even serve to diminish the positive effects of intervention. However, most interventions for ASD are evaluated only in terms of child outcomes, ignoring parent and family factors that may have an influence on both the immediate and long-term effects of therapy. It cannot be assumed that even significant improvements in the diagnosed child will ameliorate the parent and family distress already present, especially as the time and expense of intervention can add further family disruption. Thus, a new model of intervention evaluation is proposed, which incorporates these factors and better captures the transactional nature of these relationships.

Parent and Family Impact of Autism Spectrum Disorders: A Review and Proposed Model for Intervention Evaluation

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. The study also found that the distinction between felt and enacted stigma was more distinct analytically than it was in practice, as many parents tended to conflate the different types of stigma. The results of the study are considered in the context of the changing conceptualisations of, and treatments for, high functioning autism and their implications for the stigmatisation of parents.

‘Everybody just freezes. Everybody is just embarrassed’: felt and enacted stigma among parents of children with high functioning autism

Gender and coping: the parents of children with high functioning autism.

This paper reports the findings of a qualitative study of courtesy stigma among 32 parents of autistic children. The results indicate that autism has uniquely stigmatising aspects because of the extremely disruptive nature of autistic symptoms, the normal physical appearance of autistic children, and the lack of public knowledge and understanding regarding the nature of autism. Most parents perceived themselves to be stigmatised by their child's disorder. There was a strong tendency for mothers to feel more stigmatised than fathers. Parents with more severely disabled children and children who were under the age of twelve were also somewhat more likely to perceive themselves to be stigmatised.

https://onlinelibrary.wiley.com/doi/pdf/10.1111/1467-9566.ep11343802

Perceptions of stigma: the parents of autistic children

This paper reports the results of a longitudinal, ethnographic study of the psychosocial adaptation of parents of children with autism. The results indicate that most parents have experienced improvements in terms of their own psychological well-being, the social experiences of their immediate family members and their relations with members of their extended family. They also reported changes to the stressful situations they experience and their strategies for coping with them. Stigmatizing reactions of non-family members have also declined. The results were less favorable in the cases of families with aggressive and/or violent children. The parents in these families experienced high levels of stress and had few resources in terms of treatment or residential placement to deal with their situation.

Ten years on: a longitudinal study of families of children with autism

This paper reports the results of a study of psycho-social well-being among an Australian sample of parents of children with autism. A variety of independent variables including: sociodemographic information, health and treatment status of the child and coping behaviours were assessed in terms of their effects on parental depression, anxiety and anger. The results of regression analysis indicated that fathers, and those parents who received more social support, had lower scores of depression, anxiety and anger. The age of symptom onset was positively related to depression, but was not significant in terms of anxiety and anger. Parents with older children, females and larger families reported lower scores of anger. These independent variables were not significantly related to depression or anxiety. Neither the type nor the extent of coping behaviours was significantly related to any of the measures of psycho-social well-being used in this study.

David E. Gray

Papers

‘Everybody just freezes. Everybody is just embarrassed’: felt and enacted stigma among parents of children with high functioning autism

Gender and coping: the parents of children with high functioning autism.

Perceptions of stigma: the parents of autistic children

Ten years on: a longitudinal study of families of children with autism

Psycho-social well-being among the parents of children with autism