Autism

AutismJordan Institute for Families School of Social Work University of North Carolina at Chapel Hill September 2008

Definitions, Description and PrevalenceBy Laurie Selz Campbell

Autism is but one developmental disability in the range known as “autism spectrum disorders.” Other disorders in the autism spectrum include Asperger syndrome, Rett syndrome, and pervasive developmental disorder (PDD). The Centers for Disease Control (CDC) (2007) estimates that cur-rently, about 1.5 million Americans have autism, with the disorder occurring in about 1 of every 150 children overall, and 1 in every 100 boys.

While the cause of autism remains unclear, there is some evidence that genetics play at least a partial role; when there is one child with autism in a family, there is a 1-in-20 likelihood that a second child will also have autism—considerably greater than the population likelihood above. Studies of the brain have shown differences between children with autism and those without in certain regions of the brain (CDC, 2007). While the symp-toms of autism can range from quite mild to severe and disabling, there are, in general, certain clusters of behaviors that comprise the autism diagnosis (DSM-IV, 1994; National Institute of Neurological Disorders & Stroke, n. d.). These include:

1. Social interaction and communica-tion challenges� Avoiding eye contact, social play,

and interaction� Using repetition or imitation (echo-

lalia) instead of the “give and take” of conversation

� Having difficulty understanding social cues or interpreting what oth-ers are communicating

2. Extreme sensitivity to stimulation (touch and sound)

3. Preoccupation with particular objects or topics� Greater than usual distress or anxiety

related to transition or change

4. Repetitive physical movements, which can be self-injurious

In addition, many people with autism have been found to experience compro-mised immune system functioning, with greater susceptibility to common bacteri-al and viral infections, and impaired abil-ity to mobilize antibodies or respond to typical medications. They tend to have greater than usual gastrointestinal sensi-tivity and a greater than usual likelihood of having food allergies (for example, wheat gluten and refined carbohydrates).

They have been found to be quite sensi-tive to such environmental toxins as lead and asbestos (Ashwood & Van de Water, 2004; Curtis & Patel, 2008). It has been suggested that these characteristics may account for some of the sensory and neu-rological symptoms that characterize the disorder. Autism is typically diagnosed during the child’s second or third year, but some researchers suggest that subtle motor and social signs can be observed as early as 9-12 months (Baranek, 1999; Johnson & Myers, 2007). A parent might become aware that his/her child is extremely sensitive to sensory input (for

Families are Important Families are not cast in molds. Families can be single parents raising children, gay or lesbian partners, a grandmother raising a grandchild, or a group of friends living together. By choice or by chance, families are the bonds we all form. Simple catego-

ries cannot house complex networks

of relationships. Families have many

variables. Using research literature,

FamilyTrends describes different

family forms and identifies character-

istics common to certain family

types. Because to really understand

the needs of families—to shape poli-

cy and inform practice—we must

begin by understanding families

themselves.

FamilyTrends Briefs

About this SeriesFamilyTrends Briefs is a series designed to inform practitioners, policy makers, and researchers about the varied family structures that exist today. Each brief focuses on a specific family form by highlighting strengths, vulnerabilities, and suggestions for practice and policy. References are provided for those wish-ing to seek further information.

The series has been researched, writ-ten and edited by the Jordan Institute for Families at the School of Social Work at The University of North Carolina at Chapel Hill. Although reference is made to North Carolina, FamilyTrends Briefs contains information universal in appeal and application.

Additional FamilyTrends Briefs are available at <www.familytrends.org>.

example, touch, smell, or noise), while seeming to be indifferent to other aspects of the environment (for example, toys or other people). The child may appear to prefer repetitive motor play to social or imaginative/pretend play. Language and communica-tion skills may not develop as expected. Changes in routine can become extremely distressing for the child.

There is not a simple “test” to diagnose autism. Rather, the evaluation and diagnosis process incorporates direct observa-tions of the child’s behavior, detailed input from parents and caregivers, and developmental observations from pediatricians or family doctors. Initial screening often occurs during a visit to the child’s pediatrician, and is followed by a more detailed diag-

nostic evaluation with a multidisci-plinary team. A number of valid and reliable instruments have been developed to assist in screening and evaluation. For an overview of the diagnosis process and the

instruments used, see the overview provided by the National Institutes of Mental Health, available at http://www.nimh.nih.gov/health/publications/autism/nimhautismspectrum.pdf, or the summary provided by the Autism Society of America, available at http://www.autism-society.org/site/PageServer?pagename=about_diag_screening.

Strengths and Challenges for FamiliesThe course of autism is quite variable, with some individuals able to lead lives that are relatively unaffected by the disorder, and others remaining quite disabled well into adulthood. In an effort to learn more about the lives of young adults with autism spectrum disorders, some researchers (Eaves, 2008; Howlin, Goode, Hutton, & Rutter, 2004) have followed the experiences of children with autism over time. Findings suggest that, while outcomes ranged considerably, many young adults experienced limited independence, financial vulnerability, and continuing behavioral issues. Mental health disorders, obesity, and epilepsy were relatively common in the group.

The literature on the rewards and challenges for families of living with a child with autism is abundant. Families have been studied over time, from the early years of evaluation and diagnosis until the child with autism reaches adulthood. Gray (2002, 2006) followed parents of children with autism over a ten-year period. She found that, while the early years of diag-nosis and navigating the treatment system were often highly stressful, experiences of extreme stress tended to decrease over time, and perceptions of family well-being improved. Parents attributed these improvements to such factors as (a) improved ability to manage and adapt to the child’s behavior over time, (b) decreasing experiences of stigma from others outside (and even within) the family, and (c) relatively high levels of satis-faction with services.

However, Gray found that the improvement in perceived well-being was true only for families in which the autistic child did not have violent or aggressive behaviors. Parents

with a violent or aggressive autistic child tended to remain highly stressed, both emotionally and financially. They contin-ued to perceive stigma from others over time, and felt that they had few resources for support or intervention. Those resources that they could identify were often seen as unsatis-factory in quality.

Even though research suggests that families do tend to adapt to having a child with autism over time, parents’ con-cerns for their children’s quality of life, education, activities, friendships, and independence are significant (Lee, Harrington, Louie, & Newschaffer, 2008; Smith, Seltzer, Tager-Flusberg, Greenberg, & Carter, 2008), and experiences of loss may be quite considerable (O’Brien, 2007). Young adulthood often presents a new set of challenges. Krauss, Seltzer, and Jacobson (2005) compared the perceptions of mothers whose adult offspring with autism were living with them to those of mothers whose adult children had transi-tioned to out-of-home residential settings. Mothers whose adult children lived with them appreciated the positive impact of this arrangement, particularly the ability to contin-ue to be close to and enjoy the adult child. At the same time, however, significant negative impacts were identified, includ-ing the ongoing stress of managing problematic behaviors and confronting the continuing losses associated with having a child who did not traverse developmental milestones in a typical way.

In contrast, mothers whose adult children lived apart from them perceived the greatest positive impact to be on the child him/herself, in terms of opportunities for independence and continuing development, while citing negative impacts on the family in terms of being apart from the adult child. The researchers discussed the complexity and often ambivalent processes involved with caring for an individual with autism as he/she moves from child-hood, through ado-lescence, and into adulthood.

Sibling relation-ships in families in which a child has autism carry simi-lar rewards and challenges. Macks and Reeve (2007) compared the psy-chosocial and emotional adjustment of siblings of children with autism to that of siblings of typically-developing chil-dren. The presence of a child with autism in the family was associated with enhanced developmental outcomes for the typically-developing sibling, over and above the outcomes for the comparison group, when demographic risk factors were limited. However, as demographic risk factors increased (in this study, risk factors included being male, living in a family with low SES, and being the older child) siblings of children with autism experienced increasingly unfavorable outcomes, again over and above those of the comparison group siblings with similar risk factors.

About 1.5 million Americans

have autism, with the disorder

occurring in about 1 of every

150 children overall, and

1 in every 100 boys.

As with parents, relationships between persons with autism and their siblings can remain complex even into adulthood. Orsmond and Seltzer (2007) compared involve-

ment in the sibling relation-ship for adults with a sibling with autism to that of adults with a sibling with Down syndrome. Siblings of adults with autism had less contact with their sib-lings, reported less positive emotion in the relationship, felt more pessimistic about their siblings’ futures, and were more likely to state that their relationships with their parents had been

affected. Siblings reported specific concerns about what would happen when their parents were no longer able to care for their siblings with autism.

Interventions: What helps?While there is no cure for autism, a number of treatment approaches, most often used in combination, have shown con-siderable promise. While no approach is effective for all chil-dren, researchers have identified principles and practices that seem to have a higher likelihood of success.

General principle I: Early intervention. Early intervention has been highly successful in addressing many of the behavioral manifestations of autism, increasing engagement, improving the quality of social interaction, and decreasing harmful, aggressive, or challenging behaviors. For example, Turner, Stone, Pozdol, & Coonrod (2006) found that children who were diagnosed early in life and who received language and educa-tional therapies immediately upon diagnosis showed improve-ments in cognitive and language ability that were maintained at 9 years of age. Further, early diagnosis and intervention consis-tently predicted better developmental outcomes than did later diagnosis and intervention, even controlling for the quality of the intervention.

Because of the efficacy of early intervention, the American Academy of Pediatrics (2006) has recommended that all chil-dren be screened for autism and other developmental disorders during their routine medical checkups at 9, 18, 24, and 30 months.

General principle II: Inclusion. Interventions that are embedded in the child’s natural environments and routines, conducted in inclusive settings, and delivered by familiar per-sons, have been demonstrated to yield better immediate out-comes, be maintained for a longer period of time, and general-ize to a wider range of situations and settings, than do interven-tions which are delivered in more typical “special education” settings. Bellini, Peters, Benner, & Hopf (2007) conducted a meta-analysis of 55 studies of school-based interventions for children and adolescents with autism spectrum disorders. They measured both immediate and extended outcomes. Few differ-ences were found among interventions that were delivered in different ways—for example, through peers or with the child him/herself. However, statistically significant differences in out-comes were detected when the researchers compared interven-

tions delivered in the child’s classroom setting with those in which the child was “pulled out” of the classroom and then returned. Interventions conducted in the classroom setting resulted in (a) behavior changes of greater magnitude, (b) gener-alization of new skills to a wider range of settings, and (c) lon-ger periods of behavior maintenance after the end of the inter-vention.

Engaging parents as partners in implementing interventions has received considerable attention in the literature. In their review of research on this topic, McConachie and Diggle (2006) concluded that, while not definitive, it appears that such strategies can increase parental knowledge of autism, reduce parental stress and depression, and improve parent-child inter-action as well as the child’s communicative skills. They recom-mended continued careful study of the issue, since, even for the 12 rigorous studies that they reviewed, methodological issues remained, including intervention fidelity and the degree to which parental involvement as a variable could be iso-lated from other factors.

In addition to these general principles, sever-al intervention strategies show promise for chil-dren with autism. These are summarized below:

Social skill interven-tions. Since challenges with communication and interaction are among the most dis-abling for children with autism, these have, understandably, been a primary focus of educa-tional interventions. In addition, it may well be that social interaction is one of the more mallea-ble aspects of autism, with important implications for functioning, independence, and quality of life. Bauminger and Shulman (2003) interviewed mothers of children with relatively high-functioning autism to learn about the kinds of friendships that their children had

Annotated BibliographyFor more information on these and other references on this topic, please visit the Annotated Bibliography section of the FamilyTrends website (www.familytrends.org). This section summarizes the research literature and other helpful sources for a particular FamilyTrends Brief. Journals for Social Work, Psychology, Marriage and Family, Public Policy and other similar disciplines are referenced. This list will be updated periodically in order to capture the most recent literature.

There is not a simple

“test” to diagnose autism.

Rather, the evaluation

and diagnosis process

incorporates direct

observations of the

child’s behavior, detailed

input from parents and

caregivers, and develop-

mental observations

from pediatricians or

family doctors.

While the cause of

autism remains

unclear, there is

some evidence that

genetics play at least

a partial role.

formed, and the conditions under which this best occurred. Mothers described both mixed (child with autism and typically developing child) and non-mixed (child with autism and anoth-er child in special education) friendships. The researchers found that friendship does occur for children with autism, but most often required supportive environments and people for this to occur. For example, children with autism preferred more struc-tured activities that required less conversation and social engagement than did their typically developing peers.

Social skills interventions can take several different forms, including� Modifying the environment to promote and reward social

interaction (monitoring the level of stimulation, providing structured opportunities for interaction);

� Training typically-developing classmates, playmates, or sib-lings to develop skills in engaging and interacting with their peers with autism;

� Working with parents as partners in intervention, training them to implement strategies aimed at improved interaction during the course of family routines and activities; and

� Working with the child him/herself, using behavioral inter-ventions to reinforce desired social skills or training in social thinking/cognition and perspective-taking (under-standing and responding appropriately to social cues).

Each of these strategies, alone or in combination has been found to yield positive outcomes (Bauminger, 2002; Bauminger & Shulman, 2003; Bellini, Peters, Benner, & Hopf, 2007; Gresham, Beebe-Frankenberger, & MacMillan, 1999; Harper, Symon, & Frea, 2008; Horner et. al, 2002; McConnell, 2002; Tsao & Odom, 2006). Some experts have recommended addi-tional research efforts that will help to clarify our understanding of social skills interventions. Studies that focus on intervention fidelity, social validity, and an increased range of settings and contexts in order to better delineate the “fit” between interven-tion and the child have been recommended (Bellini et. al, 2007; McConnell, 2002).

Behavioral interventions. Behavioral interventions for chil-dren with autism focus on reducing harmful or undesired behaviors, as well as increasing desired behaviors. Applied Behavior Analysis strategies encompass a range of specific intervention techniques that are based on principles of operant

conditioning, whereby antecedents (stimuli or triggers), the child’s behaviors, and responses to those behaviors (reinforce-ments) are components of a “chain” that serves to increase cer-tain behaviors and decrease others (Erba, 2000; Horner et. al, 2002; Lovaas, 1987; Reed, Osborne, & Corness, 2007; Rosenwasser & Axelrod, 2001). Beginning with an in-depth assessment of those behavioral chains for the specific child, behavioral techniques focus on modifying the antecedents as well as the responses to the child’s behaviors in order to promote opti-mum skill mastery and development. After new behavioral chains are established, the focus often shifts to generalization of those new patterns to other environments and people in the child’s life.

Behavioral techniques have shown considerable promise in improving language and social interaction skills, reducing self-injurious behavior and aggression toward others, and improving attention. Horner et. al (2002) observed that behaviors identi-fied via assessment as especially important to the child’s improved functioning were the most likely to be effectively addressed with behavioral interventions. Part of this assessment included a detailed understanding of the environment in which the behavior occurred, including factors that preceded the behavior, maintained it, and/or altered it. Strategies implement-ed by parents, teachers, and other caregivers in the child’s natu-ral environment were likely to be effective as well. Horner et. al suggested that research on the manner in which the positive outcomes can be best generalized to other settings and main-tained over time is less abundant, and is a crucial step in under-standing the utility of these strategies for children with autism.

Multi-component interventions. A number of successful intervention programs for children with autism take a compre-hensive approach, addressing cognitive, sensory, and social con-cerns through intensive intervention and support. Dawson and Osterling (1997) reviewed several multi-component early inter-vention approaches for children with autism, and identified common elements among them. They found that all of the pro-grams contained the following:� Instructional activities that focus on attending to, under-

standing, and responding to social and environmental cues� Careful structuring of learning environments to provide

controlled levels of stimulation, as well as predictability in the flow of schedules and activities

� Support for generalizing what is learned in the classroom to home and other natural environments; and

� Inclusion of family members as partners in the intervention process.One of the best-known examples of a multi-component

intervention is TEACCH (Treatment and Education of Autistic and related Communication-Handicapped Children), a compre-hensive program for autistic children and adults. founded in the early 1970s by Eric Schopler at the University of North Carolina at Chapel Hill’s Department of Psychiatry. TEACCH remains based at the University, but has established a number of regional intervention sites throughout North Carolina.

Much progress has

occurred in the diagnosis

and treatment of autism

spectrum disorders.

The TEACCH intervention model, Structured Teaching, is founded on an understanding of the patterns of thought and behavior that often characterize autism-spectrum disorders. Most notably, these include (a) the tendency to focus on small units of information (particularly visual), with less skill in com-bining or organizing ideas; (b) challenges with attention, partic-ularly around disengagement from preferred activities and reen-gagement after a transition; and (c) challenges with social inter-action and communication.

Structured Teaching focuses on skill development, as well as fulfillment of “fundamental human needs such as dignity, engagement in productive and personally meaningful activities, and feelings of security, self-efficacy, and self-confidence” (Division TEACCH, n.d.). Educational strategies are multifac-eted, and include the development and implementation of indi-vidualized curricula, inclusion of families as partners in inter-vention, guided adaptation of classroom interventions to home and other natural settings, careful structuring of the physical environment, and the use of visual prompts and supports to fos-ter understanding and mastery of daily schedules, tasks, and activities (Mesibov, Shea, & Schopler, 2005).

LEAP (Learning Experiences: An Alternative Program) is a similarly comprehensive program of intervention with children with autism, in that it incorporates home and classroom envi-ronments, partnerships with families, and a broad range of cog-nitive and social skills. This program is unique, however, in that its cornerstone is service delivery in inclusive educational set-tings that include children with autism and their typically-devel-oping peers (Strain & Cordisco, 1994).

Some multi-component interventions utilize primarily play to address attentional, social, and cognitive development. One of the better-known of these is Floor Time, a semi-structured play intervention (Wieder & Greenspan, 1997) in which the child is guided through a hierarchy of developmental stages and tasks addressing self-regulation, engagement, communication, and shared problem solving.

While research findings are promising for multi-component interventions, experts have noted that much of the research in the field has been limited by small samples and intervention practices whose quality has been monitored to varying degrees. It is widely recommended that such research continue, and that it incorporate, to the extent possible, intervention and compari-

son groups, random assignment of children to intervention and comparison conditions, and close monitoring of the consistency and fidelity with which the interventions are implemented (Gresham, Beebe-Frankenberber, & MacMillan, 1999).

Medications. While there are no drug interventions that “treat” autism, various medications have been used with some success to address some of the issues and problems that tend to co-occur with autism spectrum disorders (National Institutes of Mental Health, 2007). For some individuals with autism, psy-

chotropic medications have been shown to be helpful in addressing some of the behavioral and emotional symp-toms of the disorder, including depression, obsessive-compulsive disorder, or anxiety. In addition, autistic per-sons with seizure disorders can be effectively treated with some typical anticonvulsant drugs, and the hyperactivity and impulsivity in autism can sometimes be successfully addressed with medications used to treat attention deficit disorder.

Nutritional or dietary interventions. Because of the research described above citing greater than usual sensi-tivity to environmental toxins and food allergens in chil-dren with autism, there have been efforts to design and implement interventions that focus on nutritional or dietary changes as a way to lessen the severity of autism symptoms. Curtis and Patel (2008) synthesized research addressing nutritional and environmental issues in autism, and the potential of dietary and environmental modifica-tions. They cited numerous studies demonstrating that (a)

avoidance of certain known food allergens, such as wheat glu-ten and artificial preservatives, and (b) nutritional supplementa-tion, may provide moderate treatment benefits. They concluded that, most likely, nutritional interventions are not sufficient to serve as the sole treatment modality for autism, and recom-mended further research aimed at understanding the specific conditions and combinations in which such interventions may be optimally applied.

Summary and ConclusionMuch progress has occurred in the diagnosis and treatment of autism spectrum disorders. Numerous resources, both profes-sional and informal, exist to support families in identifying and accessing the assistance that they and their children may need. For these reasons, many children with autism have the opportu-nity to grow into adulthood maintaining considerable indepen-dence. and having the chance to experience many of the same developmental milestones, joys, and challenges as their typical-ly-developing peers.

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Ashwood, P., & Van De Water, J. (2004). A review of autism and the immune response. Clinical and Developmental Immunology, 11(2), 165-174.

Baranek, G. T. (1999). Autism during infancy: A retrospective video analysis of sensory-motor and social behaviors at 9-12 months of age. Journal of Autism and Developmental Disorders, 29(3), 213-224.

Bauminger, N. (2002, August). The Facilitation of Social-Emotional Understanding and Social Interaction in High-Functioning Children with Autism: Intervention Outcomes. Journal of Autism & Developmental Disorders, 32(4), 283-298.

Bauminger, N. & Shulman, C. (2003). The development and maintenance of friendship in high-functioning children with autism. Autism, 7(1), 81-97.

Becker-Cottrill, B., McFarland, J., & Anderson, V. (2003). A model of positive behavioral support for individuals with autism and their families: The family focus process. Focus on Autism & Other Developmental Disabilities, 18(2), 110-120.

Bellini, S., Peters, J. K., Benner, L., & Hopf, A. (2007). A meta-analysis of school-based social skills interventions for children with autism spectrum disorders. Remedial and Special Education, 28(3), 153-162.

Centers for Disease Control (2007). Autism spectrum disorders over-view. Available at http://www.cdc.gov/ncbddd/autism/over-view.htm

Curtis, L. T., & Patel, K. (2008). Nutritional and environmental approaches to preventing and treating autism and attention def-icit hyperactivity disorder (ADHD): A review. The Journal of Alternative and Complementary Medicine, 14(1), 79-85.

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Erba, H. (2000). Early intervention programs for children with autism: Conceptual frameworks for implementation. American Journal of Orthopsychiatry, 70(1), 82-94.

Gray, D. E. (2002). Ten years on: A longitudinal study of fami-lies of children with autism. Journal of Intellectual and Developmental Disability, 27(3), 215-222.

Gray, D. E. (2006). Coping over time: the parents of children with autism. Journal of Intellectual Disability Research, 50(12), 970-976.

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Harper, C.B., Symon, J.B.G., & Frea, W.D. (2008). Recess is time-in: Using peers to improve social skills of children with autism. Journal of Autism and Developmental Disorders, 38, 815-826.

Horner, R., Carr, E., Strain, P., Todd, A., & Reed, H. (2002, October). Problem Behavior Interventions for Young Children with Autism: A Research Synthesis. Journal of Autism & Developmental Disorders, 32(5), 423-447.

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About the Jordan InstituteCreated in 1996, the Jordan Institute for Families

is the research, training, and technical assistance arm of the School of Social Work at The University of North Carolina at Chapel Hill. The Jordan Institute is a nonprofit, nonpartisan organization that develops knowledge and promotes practices and policies that build supportive families and stable communities.

Cutting across traditional disciplinary lines, the Jordan Institute is a conduit partnering scholars and researchers from complementary fields. This interdis-ciplinary approach leads to rich and relevant research and training and ensures that the Jordan Institute makes substantive and systemic contributions to poli-cy and practice.

The Jordan Institute addresses family issues across the lifespan that threaten to undermine some families-such as poverty, abuse, mental illness, school failure, and substance abuse-as well as challenges that con-front most families--such as providing for aging family members and caring for young children.

For more information about the Jordan Institute and its projects, please visit <www.jiforfamilies.org>.