Family Impact of Children with Autism and Asperger Syndrome: A Case for Attention and Intervention

Research Articles

Austin J Autism & Relat Disabil. 2015;1(2): 1008.

Family Impact of Children with Autism and Asperger Syndrome: A Case for Attention and Intervention

Erica Howell¹*, Stacy Lauderdale-Littin² and Jan Blacher³

¹Department of Special Education, California State University, USA

²Developmental of Psychology and Behavioural Science, Monmouth University, USA

³Developmental of Clinical Psychology, University of California, USA

*Corresponding author: Erica Howell, Assistant Professor, Department of Special Education, CP 570- 25, College of Education, California State University, Fullerton, PO Box 6868, Fullerton, CA 92834, USA

Received: November 14, 2014; Accepted: June 08, 2015; Published: June 10, 2015


This paper examined the impact of families living with young children (n = 15) with High Functioning Autism (HFA) and Asperger Syndrome (AS). A mixedmethodology design investigated parent perspectives and emerging themes encompassing the diagnostic process, the impact of child characteristics, accessing services, and parental concerns for the future. Results indicated that families experienced both positive and negative impact of having a child with HFA/AS; externalizing behaviours correlated negatively with positive family impact, r(13) = .69, p< .01. Findings have implications for medical professionals, families, and community partners in reference to providing effective resources for families experiencing HFA/AS.

Keywords: Autism and families; High-functioning autism; Family impact, Asperger syndrome


Increased attention in media and research has contributed to a broader understanding of High Functioning Autism (HFA) and Asperger Syndrome (AS). Although much attention is given to autism spectrum disorders as a whole, it is important to understand characteristics of those individuals functioning at the more cognitively able end of the spectrum. While debate continues over diagnostic and definitional issues [1-3] the distinctive needs of individuals falling in Level 1 “requiring support” within the Diagnostic Statistical Manual-V [4], as most individuals previously diagnosed with HFA/ AS would, is of continued importance. This is especially critical as unique patterns of behavior related to social competency, co-morbid disorders, and other long-term outcomes specific to HFA/AS may have distinct impacts on families and the educational experience.

The purpose of this paper is to explore the impact of children with HFA/AS on their families, from both concurrent and future perspectives. In so doing, several considerations have been posed. One is that child characteristics may have differential impact on families, particularly the co-morbidity of mental health disorders. While social impairments may be somewhat less obvious in the family context, the consequences of social deficits in the school context, which can result in individuals with HFA/AS being bullied and, ultimately, having clinical levels of depressions may also increase stress on parents [5]. Finally, simply navigating the public school system and other service delivery programs may result in increased stress on parents as well.

Role of co-morbid disorders in family impact

Individuals with AS and HFA are at heightened risk for poor mental health outcomes [6], such as anxiety, depression, and mood disorders [7]. With AS and HFA being foremost social disorders the associated challenges, such as peer rejection, correlate highly with levels of depression [8]. On the other hand, predictors of depression for higher functioning children seem to include knowledge of one’s social competence and membership in a social group [9,10]. In addition, parent-ratings of child awareness of disability were related to higher levels of depressive symptomatology [11]. These findings indicated that individuals who recognized their social deficits experienced poorer mental health out come as compared to those with lower levels of awareness.

When the relationship between Intellectual Quotient (IQ) and depression were further examined, participants with higher fullscale IQs tended to have lower rates of depression [12,13] possibly indicating that intellectual competency in individuals with HFA/AS protects against depressive symptomatology. An examination of longterm depressive characteristics by Barnhill and Myles [14] reflected a stable pattern of depression into adolescence where up to 80% of participants with AS in their study used prescription anti-depression medication. Similarly to the general population, a family history of depression is typical for children with ASD who have depression. This is a notable finding as family resources may be further taxed when parents are concurrently facing personal mental health challenges and child depression.

Long-term impact on families and individuals with HFA/ AS

Although the characteristics of HFA and AS continue to be manifested across the lifespan, the course of development differs between individuals [15-17]. A plethora of research seems to indicate that symptoms of ASD show improvement into adulthood [18-21], with adults displaying less restricted and repetitive behaviors and interests than adolescents with ASD [22]. Furthermore, IQ scores greater than 70 in childhood are a predictive characteristic of better outcome in adulthood [23].

As mentioned above, social relationships continue to be problematic into adolescence and adulthood and impact successful employment [22,24]. Orsmond, Krauss, and Seltzer found that almost half of their 234 adolescent and adult participants with ASD had no relationships with peers outside of structured social activities like school or work [25]. Participation in social and recreational activities included internal and environmental predictors. Internal predictors were more independent skills, higher social behaviors, and less internalizing behaviors, while environmental predictors included maternal involvement in social activities, receipt of more services, and participation in inclusive settings.

Although autism related characteristics have been shown to decrease over time, the challenges that continue into adulthood may cause concern or worry for families of children with HFA/AS. Despite average to above average IQs, these population experiences poor vocational outcomes [26] and limited relationships with others in adulthood. As their strongest advocates, families of children with HFA/AS may find themselves under stress throughout the lifespan, as they cope with finding appropriate diagnostic and educational services.

Family stress

Research specifically investigating stress levels in families has differentiated findings between families of a child with HFA/AS as compared to families with typically developing children. When examining social deficits and acceptance in parents of a child with HFA/AS [27] found that parents of children with autism had significantly higher levels of concern about their child’s achievement, self-esteem, stress-coping, learning difficulties, and incidences of bullying than did parents within an unaffected control group. In addition, mental health, social acceptance, and socialization have also been identified as areas of concern [28,29]. In an internet survey conducted by Little and Clark, the primary parental concern for children with autism ages 3 to 21 was the social “survival” of their child. Parents expressed concerns that their child would never make friends, not adapt to various social situations, suffer from depression, and would fall prey to victimization. For instance, the consequences of social impairments that children with HFA/AS exhibit may have consequences for a child’s mental health that ultimately increase stress on parents. Van Roekel et al. found that a lack of social competence in the school context resulted in increased instances of bullying when compared to typical peers [5]. These negative social experiences have wide ranging consequences for the child, including poor self image and clinical levels of depression or anxiety, compounding parent responsibility to provide appropriate support.

Another stressful component of parenting children with HFA/AS is the diagnostic and planning process. Parent reports indicated that time-to-diagnosis, lack of full parental participation in educational planning, and the failure of using intervention data to inform educational plans were especially taxing [30]. The impact not only has an effect on parents, but also siblings and interpersonal relationships between family members [31]. In one study, investigated variables that impacted stress level and relationships for 20 couples with children with ASD and 20 couples with neuro-typical children [32]. Significant differences emerged between the two groups indicating that couples who had children with ASD experienced more intensive and frequent child behavior problems, higher stress, less relationship satisfaction, and less overall social support. While providing some insight, this study focused on the entire spectrum of ASD, causing one to wonder if similar outcomes would be found if the study differentiated to HFA/AS.

Another important study by Kelly, Garnett, Attwood, and Peterson used structural equation modeling to investigate family conflict and cohesion [33]. The findings indicated that higher levels of family conflict predicted anxiety/depression in children with ASD and that anxiety and depression predicted more ASD symptomatology. Consequently, behavioral characteristics of ASD seem to have a circular impact on family stress, mental health, and the expression of autism.

Mothers appear especially vulnerable to experiencing stress related to their child with ASD [34-39]. While fathers reported significantly less stress than mothers in relation to parenting [40], stress profiles in mothers of adolescents and adults with ASD indicated three times more stressful events per day and twice as many stressful days overall when compared to mothers of typically developing children [41]. Specific variables contributing to stress were fatigue, work intrusions, care of child, chores, and fewer leisure opportunities. In addition, parents of children with ASD have significantly higher divorce rates than families of children without disabilities [42]. As many of these studies focus on families of individuals with ASD as a whole focusing on the family impact of having a child on the higher end of the spectrum needs to be further explored.

Role of supports

Supportive social networks provide beneficial reductions in stress for parents of children with ASD [43,44]. Ironically, the families in most need of social networks received the least support. For example, frequency of support from family members and relatives tended to be lower for families with a child with HFA than for families who had typically developing children [45]. When investigating family environment and social support outcomes for families of children with Asperger syndrome, learning disability, or typical development, parents of children with AS rated themselves as demonstrating expressive feelings less often, but rated their family organization higher than the other two groups [46]. Their perceptions of number of friendships and social supports were also rated as significantly lower than the groups with learning disability and typically developing children. When family styles were taken into account, parents of children with autism who described their families as enmeshed reported more positive coping strategies than disengaged, separated, or even connected families [47]. Overly involved and protective family patterns may be beneficial for families of children with autism.

Formal supports such as respite care, parent training, treatment, and support groups can contribute to positive impact on the family system. A meta-analysis by Chan and Siagoos on the impact of respite care for children with developmental delay concluded that, when respite care was utilized, there was a reduction in parental stress and an increase in coping abilities [48]. Considering that parents of children with ASD are less likely to engage in recreation and leisure activities, they may be less likely to access respite or babysitting supports, with some potential jeopardy to coping and mental health [49].

Purpose of study

With the research suggesting co-morbid disorders, behaviors related to social competency, a lack of supports for families, and other long term outcomes associated with HFA/AS have and impact on overall family functioning and stress, the current study examined family perspectives of children with high-functioning autism and Asperger’s syndrome in order to explore these themes in more detail. Child impact on the family and struggles families faced obtaining a diagnosis and access to services were explored. Furthermore, parent perspectives were ascertained on the future of their child. Four related questions were addressed utilizing a mixed method approach in order to develop a more complex view [50] of the impact of raising a child with HFA/AS.

1. How do families of children with High Functioning Autism and Asperger’s Syndrome (HFA/AS) view the process of diagnosis and obtaining services?

2. What is the impact, both positive and negative, of having a child with HFA/AS?

3. What advice do parents have for other families with a child recently diagnosed with HFA/AS and the professionals that work with them?

4. What future concerns do families of a child with HFA/ AS express?



Data for this study were collected from 15 families who had children diagnosed with High Functioning Autism (HFA) or Asperger Syndrome (AS) living in Southern California. Families comprised a sample of convenience, recruited through autism agencies and an ongoing research project that had access to parents of children with HFA/AS. Professionals at each agency, and the researchers, identified several children who met the inclusion criteria, and their parents were given or mailed information about the project. From this mailing, 13 families chose to participate by contacting the principal investigator. In addition, two families were recruited through parent referral bringing the total to 15 participants.

Children were of preschool or early elementary school age, with a mean of 8 years (range: 4 to 10 years). All had an existing diagnosis of high functioning autism or Asperger syndrome, obtained by licensed psychologists who worked for the participating agencies, prior to participation in this study. It was a generally Caucasian, male sample (83%). About half of the children (55%) attended school in general educational settings with typical peers.

Parents were relatively young, well educated, and most were partnered (87%). The mean age for mothers was 40 years (range: 22 to 53 years); 50% of whom were employed, and 44% had at least a bachelor’s degree. The mean age of the fathers was 46 years (range: 30 to 69 years); 93% of whom were employed, and 47% had at least a bachelor’s degree. Although there was variability in family income, 87% of families earned over $50,000 per year. All child and family characteristics can be found in Table 1.

Citation: Howell E, Lauderdale-Littin S and Blacher J. Family Impact of Children with Autism and Asperger Syndrome: A Case for Attention and Intervention. Austin J Autism & Relat Disabil. 2015;1(2): 1008.