At the Children’s Autism Center, we often talk about the need for family involvement in therapy. Some might wonder why we focus so much of our efforts on families when much of the early research in Applied Behavior Analysis with children with ASD focused on intensive center-based early intervention. When parents and caregivers of children with ASD are already struggling to balance so many other things, why do we insist they also be heavily involved in ABA therapy?

There are several reasons why we do this, and some may surprise you.

1. Parents and caregivers know their child’s needs.

Sometimes when a clinician is trying to select goals for social significance, we end up missing the mark for what is important and meaningful in that child’s home, community, and school. As clinicians, we come with our own biases and learning histories.

Things that may be important to us, might not be as big of a priority for our clients in their everyday lives. By looking at skills the family prioritizes, we can address barriers to other activities that might ease the burden of caring for a child with ASD.

For example, if a caregiver is stressed about taking their child to large family events, we would want to work on helping our client be more successful at family events. Doing this simple thing could open many avenues of support for that caregiver. Further, parents who have more involved social support networks tend to experience less stress, which directly relates to health outcomes for children (Ozbey et al., 2007).

We need to work with parents and caregivers to identify goals that are socially significant and meaningful for them. By focusing on these skills in the short run, we can achieve more in the long run.

2. The research on child outcomes supports parent and family involvement.

In those early studies that recommended 40+ hours of therapy per week, many of those hours were delivered by parents in their homes, in addition to the hours spent in the clinic (Smith & Eikeseth, 2011). When parents are involved in teaching their children the skills worked on in therapy, not only do the kids master more skills, but they are also able to apply those skills in new ways and in new environments.

In ABA, we call this “generative instruction,” meaning that our kids are able to generate new responses in varying environments with different levels of difficulty and effort (Johnson, et al., 2021). Our goal in ABA therapy is to get our clients to the point where they no longer rely on us for learning new things, but rather the environment they live in provides all of the lessons and reinforcement to learn new things and grow in new ways. We can’t do that without parental involvement.

3. Self-advocates are more effective at changing systems than clinicians.

The most effective movements in history have been won by self-advocates, not others advocating on their behalf. Think of the people you recall as the lead voices in the Civil Rights Movement, the Woman’s Suffrage, the Americans with Disabilities Act. Most people picture Martin Luther King, Jr., Susan B. Anthony, and Judith Heumann; they don’t picture politicians or clinicians advocating on behalf of those they serve. It is often the people who are being discriminated against that have the loudest voice and most compelling experience to share.

Professionals and others can support them by providing a platform, funding, and research, but the individuals and their families who experience ASD are the best ones to tell the world what they need. In 2001, the first legislation passed for insurance to cover ABA services for individuals with ASD was fought for by 5 mothers, right here in Indiana.

And every one of the 50-states to follow, was brought to legislators and fought for by parents of children with ASD who wanted more for their children and wanted the system to change to support the health and wellbeing of their child. As children age, and become adults, that self-advocacy is such an important skill for them to learn, and who better to learn it from than a parent.

In summary, at Children’s Autism Center, we understand that families are under an immense amount of pressure. We work creatively around challenging schedules to help families to access training and support, so that their child has the best possible outcomes. We want to create a community where our clients, their families, and their communities can come together to work towards common goals. We embrace family involvement, and we fully believe that our clients have better lifelong outcomes when their families are involved. It is why we say, “Where families come first,” in our tagline.

References

Ozbay F, Johnson DC, Dimoulas E, Morgan CA, Charney D, Southwick S. Social support and resilience to stress: from neurobiology to clinical practice. Psychiatry (Edgmont). 2007 May;4(5):35-40. PMID: 20806028; PMCID: PMC2921311.

Johnson, K., Street, E. M., Kieta, A. R., Robbins, J. K. (2021). The Morningside model of generative instruction: Building a bridge between skills and inquiry teaching. Sloan Publishing.

Smith, & Eikeseth, S. (2011). O. Ivar Lovaas: Pioneer of Applied Behavior Analysis and Intervention for Children with Autism. Journal of Autism and Developmental Disorders, 41(3), 375–378. https://doi.org/10.1007/s10803-010-1162-0