According to a March 2023 press release from the CDC, about 1 in 36 (2.8%) children have been identified with Autism Spectrum Disorder based on data gathered from 11 communities around the United States. This is a 22% increase from 2018, which found the prevalence of ASD to be 1 in 44 (2.3%).
What is Autism Spectrum Disorder (ASD)?
ASD is characterized by challenges in social communication and interaction and restricted or repetitive behaviors. Individuals with ASD have variable ways of learning, paying attention, or regulating emotions. It is also reported across all racial, ethnic, and socio-economic groups.
In recent years, with increased screening and identification, progress has been made in understanding this complex disorder. Treatment interventions are provided through various educational approaches, developmental therapies, and behavioral interventions. Medications have also been shown to produce positive outcomes in treating behavioral and psychiatric symptoms in individuals with ASD.
Family Challenges Around ASD
Alex, a 12-year-old African American boy, was brought to the outpatient clinic for treatment of his disruptive behavior. Alice and John have no biological children, and Alex was adopted shortly after birth. John works full-time while Alice stays at home.
Alex was diagnosed with ASD at the age of 7 when he faced significant challenges with his emotions and behaviors. The adoptive family members were mixed race, with the father and Alex being black and the mother being white. The family entered treatment with the belief that his behaviors were linked to his diagnosis of ASD.
Alex had a history of challenges with regulation of his emotions, struggles with maintaining focus, limited impulse control, and being easily agitated. His parents mentioned that they do not have a holistic approach to addressing his issues. Despite his father believing that he needed more structure and discipline, his mother believed that he lacked emotional regulation skills. Alex perceived his father as strict and disciplinary and he worried about his mother, so he did not express his feelings to either of them.
While raising a child with autism can be rewarding, given their many unique passions, talents, and strengths, it also brings a set of challenges for the families. Family members may experience a mix of emotions, including love, joy, frustration, and stress as they navigate the complexities of autism. Unfortunately, families suffer.
Higher levels of mood disorders are seen in families with autistic children which is attributed to their experience of stress associated with diagnosis, genetic factors, and intergenerational family dynamics. Parents of children with ASD experience more marital strain and are twice as likely to divorce compared as compared to parents without a child with ASD.
Families can experience stress at each stage of their child’s life. Their journey starts with difficulties in accessing needed services when they first notice their child’s developmental delays and then have to scramble to find accurate diagnoses and treatments.
Parenting children with autism also involves stress associated with their children’s challenging behaviors, communication difficulties, isolation, and atypical attachment behavior. Stress can be further exacerbated when parents are unable to secure appropriate resources during school-age years. They may experience feelings of anguish and disappointment when they witness their child being rejected by peers in their teenage years. Finally, families can experience burnout when they are later faced with increased demands of caring for autistic adults.
The desire to reconcile differing views on how to parent and treat a child can further strain the relationship between parents. In addition, an autistic child’s siblings may experience feelings of jealousy, embarrassment followed by the stress of caretaking responsibilities as adults.
Differences often ensue between extended family members and parents over both the causes and the remedies for the challenges of autistic children. All these factors can strain the family environment and may lead to more behavioral outbursts in children with autism, limiting their developmental progress.
Family Therapies for ASD
Family plays a vital role in the effective treatment of children and youth with ASD. While family therapy does not cure ASD, it can offer a comprehensive approach to address the unique needs of individuals with autism while strengthening adaptive family dynamics. It can help break the negative cycle of interaction to create a unified approach to parenting.
Mental health professionals and families can work together to find the right intervention that suits the needs of families to foster growth and harmony in relationships. A variety of approaches require substantial involvement of families in the treatment process.
- Applied Behavior Analysis (ABA) is an effective modality that works to teach new skills, including improving social and communication skills. It also works to eliminate challenging behaviors while focusing on increasing desired behaviors through prompting and reinforcement. A family-focused ABA approach promotes parental involvement and empowers parents.
- The Developmental, Individual Differences, Relationship-Based model also called “floor time” encourages parents and therapists to follow the interests of the individual to expand opportunities for communication.
- One study in the UK showed positive outcomes for Systemic Autism-related Family Enabling (SAFE) which is a systemic family therapy approach designed to address autism-related needs. Treatment includes problem-solving to address poor socio-communication, mental health difficulties, and challenging behavior.
How Can Mental Health Professionals Help?
Things that mental health professionals can do to support families caring for children with autism include:
- Share knowledge and tools to better understand autism, its impact on life, and adjusting to a diagnosis of autism – which can be traumatic for some families.
- Explore the boundaries, roles, and hierarchies within a family to create a more supportive and structured environment that fosters collaboration among family members caring for a child with autism.
- Enhance communication and feedback among family members to mitigate feelings of despair while addressing the behavioral concerns commonly seen in children with autism.
- Utilize active listening and find mutually acceptable solutions to support family members’ concerns.
- Focus on positive parenting skills such as positive reinforcement, token systems, structured routines, etc.
- Support families in building social networks such as joining parent support groups through autism speaks to make connections and share experiences.
- Talk to parents about self-care to manage their own stress such as practicing meditation, deep breathing, daily exercise routine, making time for family and friends, and acknowledging their accomplishments in the face of child-rearing difficulties.
As Alex and his parents entered the family therapy sessions, the therapist initially addressed contrasting parenting styles by fostering communication between both parents and giving them the opportunity to articulate their parenting perspectives. As a result of enmeshed boundaries, the therapist explored how one parent and a child form a close alliance instead of parents remaining a cohesive unit. Parents were consistently provided psychoeducation about the implications of ASD diagnosis on family functioning and dynamics.
Over time, the family developed the ability to resolve the issues independently, leading to an enhancement in family cohesion and adaptability. Family therapy played a role in redirecting attention from ASD as the central guiding factor in family dynamics facilitating an overarching balanced approach to address the difficulties.
Family therapy can generate positive relationships that can help develop cohesive, orderly, and supportive environments. By restructuring family dynamics, and providing education, support, and play-based interventions, it can address the unique challenges faced by families living with autism.
In choosing the right intervention, therapists can collaborate with families to enhance communication, foster understanding, and promote the well-being of their loved ones with autism. Every family living with autism has unique challenges. Finding the right therapeutic approach can make a significant difference in the journey toward a harmonious and supportive family life.
Narpinder Kaur Malhi, MD, and Rama Rao Gogineni, MD, are Members of the Family Committee at The Group for the Advancement of Psychiatry. The Group for the Advancement of Psychiatry (GAP) is a think tank of top psychiatric minds whose thoughtful analysis and recommendations serve to influence and advance modern psychiatric theory and practice. For more information, visit www.ourgap.org.
This article has been reprinted with permission. You may view the original article, published on August 15, 2023, at www.psychologytoday.com/us/blog/psychiatrys-think-tank/202308/supporting-families-with-autistic-children.
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