Support parents who care for children with autism
Applied Behavior Analysis (ABA) is considered by many to be the gold standard for treating children with autism spectrum disorder (ASD). April is National Autism Awareness Month, making it a good time to review the importance of this evidence-based approach, and specifically, the role of parents and caregivers.
Parents and caregivers play a critical role in the ABA process, as they are central to reinforcing what is taught in session by the ABA therapist. Such a role is challenging for parents and caregivers and understandably can cause parental stress. In fact, stress is the main reason for lack of parental involvement in a child’s early intervention program, such as ABA, according to one study.
Supporting parents and caregivers, therefore, is important to a child’s successful ABA treatment.
Parents reinforce ABA therapy
Early diagnosis and intervention are necessary to achieve the best outcomes in treating children with autism. ASD treatment focuses on improving children’s abilities in communication, self-help skills and social interactions. ABA uses specific teaching methods, such as positive reinforcement, with a focus on how learning is achieved. When the child is not actively in therapy, parents and caregivers reinforce what has been taught during these sessions.
Parents and caregivers play a critical role in the ABA process, as they are central to reinforcing what is taught in session by the ABA therapist.
Indeed, ABA therapy isn’t nearly as effective without parental involvement. When parents do not participate, a disconnect develops between what is taught in therapy and what occurs in the home. This disconnect prevents children from applying what they have learned across different settings and environments. Learning in ABA also requires repetition and practice, and practice opportunities are lost if the child is not receiving this reinforcement from parents and caregivers in the home. Children who receive consistent parental teaching in conjunction with an early intervention program demonstrate overall improved cognitive and developmental skills.
The data demonstrate that ABA works. In one study of children with ASD who received intensive treatment for 40 hours per week over a period of two years, 47 percent of those who received this intensive ABA therapy were functioning at the same level as their peers who did not have ASD.
To stay involved, parents need support
Parents rely on both formal and informal supports to help their child with autism, according to a study on family support needs. Informal supports include assistance with everyday tasks and emotional support from family and friends. More formal support includes help from myriad professionals, ranging from speech pathologists to behavioral health therapists to special education teachers. Both sets of support are more effective when provided in the context of family-centered care, which calls for establishing relationships based on mutual respect and open communication.
The study also reports that mothers and fathers feel differently about whether their support needs are being met. Mothers and fathers experience parental pressure disproportionately as “mothers reported higher levels of parenting stress and more depressive symptoms than did fathers,” even though most support services are geared towards mothers, the study continues.
In brief, mothers’ unmet needs focus on child therapies and treatments, while fathers feel their needs are unmet in the areas of parent self-care and relaxation. It’s important to note these differences as we determine what supports parents need to help them be more effective in their children’s education and therapy.
Supporting parents of children with ASD
Regardless of different support needs voiced by mothers and fathers, support is indeed necessary. Not only is it critical to parents, but it’s also critical to the child’s successful development. As noted, stress is the main reason for lack of parental involvement. How, then, can we address that stress?
Research indicates that access to a support group as well as follow-up services post-diagnosis are of most benefit to parents. A parent support group helps parents to adapt better to the diagnosis, reduce stress and navigate services. While parents of children with ASD seek support from friends, they prefer receiving support from families with ASD experience: 68 percent sought support from friends while 93 percent sought information from families with a similar diagnosis.
Research indicates that access to a support group as well as follow-up services post-diagnosis are of most benefit to parents.
Closing gaps in care is always critical to successful treatment, and support for parents of children with autism is no exception. Beacon’s experience with all behavioral health conditions has taught us that important lesson. Specific to ASD, Beacon’s coordinated care model for ABA therapy offers family support from a dedicated ASD clinical team, including case management and help with referrals to an ABA or behavioral health specialty network. Through a needs assessment, we identify and provide ongoing family coaching, including information on treatment options, family coping strategies and advocacy. We also connect families to legal/financial resources, support groups and online educational information.
The approach is family-centered, which as noted, is most effective. It helps to determine the needs unique to each family member, such as information on treatments for the mother or relaxation outlets for the father. As we seek to help families of children with ASD, it’s imperative that we include the whole family because children with ASD can’t thrive without their families’ support