The FAMCare Blog

Autism Spectrum Disorder is a heritable neurodevelopmental disability that is characterized by delayed or inconsistent development in social interaction and communication and a restricted repertoire of activity and interests. The Centers for Disease Control and Prevention has found a higher prevalence of autism in children than ever before. Autism Spectrum Disorder is currently occurring at a rate of 1 in 59 children in the United States, an 18% increase over the past two years and a 151% increase since the Centers for Disease Control and Prevention (CDC) first began to monitor the prevalence of ASD in 2000. Social work academics believe that increased prevalence can be explained, in part, by changes in diagnostic criteria, diagnostic substitution, improved awareness in the public, and increased recognition by clinicians.

The Social Impact of ASD

ASD is not a disease or even an affliction that can be cured or mitigated by some form of therapy. It is a disability that is often completely unexpected and largely misunderstood and, for that reason, has many negative impacts on the life and health of families.

• It can take multiple years between initial screening for ASD and diagnosis by a professional, and many parents experience disbelief, denial, and a lack of understanding about ASD during this diagnostic waiting period.
• Evidence suggests that children’s challenging behaviors and parents’ stress are bidirectionally impactful in the parent-child relationship. Thus, heightened parental distress may lead to more challenging behaviors, making intervention to reduce challenging behaviors and parental stress a complex reciprocal relationship.
• Parents of children on the autism spectrum often report strained marriages, social isolation, financial strain due to lost wages and additional costs of services, and challenges with adapting family life to meet the unique needs of their child.
• Children on the autism spectrum report intense and frequent depressive symptoms and anxiety compared to typically developing peers. Their symptoms of depression and anxiety are related to parental stress.
• Siblings commonly report experiencing challenges during childhood due to their brother or sister’s unpredictable behavior or increased parental attention focused on their brother or sister. Meanwhile, other siblings report feeling embarrassed by their sibling’s behavior in public.
• Historically, most individuals on the autism spectrum spent their lives in asylums (similar to individuals with intellectual disabilities) until widespread deinstitutionalization in the 1980s and 1990s occurred in the United States.

Inside ASD Looking Out

• Many people on the autism spectrum view interventions as discriminatory if the interventions focus on changing the individual behavior of people on the autism spectrum rather than changing society.
• Most current evidence-based interventions and services for ASD, including applied behavior analysis, cognitive behavioral therapies, and many vocational training programs, attempt to change the behavior of individuals on the spectrum rather than educate society to better include and accommodate people on the autism spectrum.
• Interventions generally focus on individual-level functioning but do not increase society’s acceptance of people on the spectrum.

Social Worker's Role

Social workers engage in research, practice, education, and advocacy aimed at supporting individuals on the spectrum and their families. Most of the advocacy is aimed at helping communities enhance their awareness and acceptance of those with autism as unique and valuable members of society. Social work researchers are playing a key role in investigating the diverse experiences of people on the spectrum, with an eye towards developing and testing a continuum of interventions that confront social injustice and promote the full and meaningful inclusion in society for those on the autism spectrum.

Irony

People on the autism spectrum are a decidedly vulnerable population who experience substantial social and economic injustice. In the past, most of the interventions designed to help were aimed at changing the behaviors of such individuals as if it were a disease that needed curing or a behavioral disorder that therapy could alter.

Finally, realizing that people on the autism spectrum were not suffering from a behavioral disorder but rather possess unique and special gifts to contribute to society, social workers went into action to create and execute programs to educate and change the way society views this vulnerable population. The National Association of Social Workers Code of Ethics ethically obligates social workers to “challenge social injustice" in partnership with individuals on the autism spectrum and their families. Bravo.