Vision (September 26, 2005): When a small group of parents first received the news that their children were diagnosed on the autism spectrum, they never dreamed they would open a center for evidence-based services. They were, like most parents, trying to figure out what the diagnosis meant and what to do the next moment. When they came together with a common goal, however, the result was the first applied behavior analysis (ABA) center in Northeast Indiana: Children’s Autism Center (CAC).

The focus for the CAC founders was building a center for compassionate AND effective care. Their children were still developing communication skills, so it was important to the parents that the children were cared for in a kind, respectful, and patient manner; their children could not tell them otherwise so trust in the staff was huge.

Effectiveness was the other critical component for the founders. Days are slow but weeks are fast and every week that passed could either mean gains, stagnation, or losses in terms of learning for their children. The group pushed for gains and efficient use of time.

Since the incorporation of Children’s Autism Center in 2005, the focus of CAC has remained true to the founders- providing the highest quality of effective, compassionate care possible.

Ann Zelt, one of the founding board members, says:

“CAC came into being as there was a need in our community to provide effective medically proven compassionate treatment to children with autism as there were no other local alternatives. Excellence was the standard from the very beginning as the children and their families deserved such. The priority of helping the child and family improve their quality of life was a given. Furthermore, we felt strongly, as we still do, that all children regardless of ability to pay deserve such necessary treatment.”

As the organization was built, it was quickly apparent that every member of the CAC staff and Board of Directors is important to realizing the goals.

Over the years, we have found that retention of our staff ensures efficiency and effectiveness – as well as being a tremendous boost to our culture. We have talented and dedicated staff who have been with the organization ten years or more. Recruitment of new talented staff is a critical element as well. Fresh innovation comes from both new talent and actively seeking learning from the field of ABA and business.

Dani, our trainer for newly hired RBTs, is the first staff member who molds our team. Dani notes:

“As the RBT trainer, I believe it’s important to not only teach our new staff the skills to be an RBT, but also teach and model the importance of how to interact with the children we serve. In our training we have a hands on and interactive training and as their trainer I take every opportunity I can to teach them how to make learning fun and facilitate fun in our training environment!

We have an open-door policy in our training room and the RBTs and clients are encouraged to visit from time to time so we can model how much we care about our clients and invest in their success. I also believe the group concept of our training aids in learning and growth because we are able to discuss and share our experiences and grow together as practitioners and as a support system as we continue on our CAC journey.

At the end of training I always encourage the new staff to remember it’s important to use the skills you learned with the clients we serve but also model acceptance and understanding of autism in the community you are in, because if we do that together we can make the world a better place for any child or adult with autism, not just those in our care.”

The organization’s founding parents had lofty goals and visions of creating a supportive space for autistic individuals in our community. Almost twenty years later, this work is never done. We can always do better and be better. It is so inspiring that Children’s Autism Center’s Board of Directors and Staff are continually pushing forward and evaluating how the organization can further its impact on our community. It is an honor and privilege to serve our community with this team.

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