Our amazing daughter

Autism is a diagnosis that can be emotional for parents and families to accept. In our case, the diagnosis needed to be accepted by our family. Our daughter is amazing. She is incredibly bright, sweet, and an absolute joy to be around. As a parent, one of the most gut-wrenching things we experienced was being told time after time, “Your child has challenges, but no one knows why.” In May of 2013, we finally got our answer. Our beautiful girl has a rare genetic condition called Cohen Syndrome that causes intellectual, medical, and physical disabilities. Receiving this diagnosis was bittersweet because we finally got an answer, but we still didn’t know how to help our daughter. With a rare genetic condition like this, there are several programs, specialists, and therapies available that we didn’t even know existed. There are people with resources who wanted to help but had never heard of our child’s condition. It was very alarming for us because even though we were thankful for their help, the process can be anxiety-inducing.

When our daughter was diagnosed with Autism a year ago, it wasn’t a bittersweet moment like when we received her original diagnosis of Cohen Syndrome. It was just sweet! Autism Awareness has been raised, and there are people in the education and medical field who have experience with Autism. I fully accept that our daughter has Autism, but the fact is that a lot of her challenges stem from her primary diagnosis that is rare. I asked myself how this “known” diagnosis could help when you have to take her “unknown” diagnosis into account? The answer was ABA therapy.

Although we have seen AMAZING progress through ABA therapy in our daughter over the last year, the truth is that it cannot be contributed fully to “just” ABA therapy. ABA therapy with the right team is the answer. What makes the right team? Compassion, humility, resource-connected, knowledgeable, and experienced team members. ABA is an evidence-based practice.

We know firsthand that having a team that is compassionate and humble will allow for success. Having a child with complex healthcare needs is overwhelming. We almost always feel like we aren’t doing enough (are we acting more like advocates instead of just being mom and dad? Is our child receiving the right therapies, too many or not enough? How can we balance comfortability for a child whose world is almost always uncomfortable, but also push her to reach her full potential?). Adding ABA therapy to our already crammed schedule brought apprehension. But having the right team, takes the stress out of the equation. We (parents, child and staff) work together on proper goals and time management.

ABA is an excellent tool that I highly recommend families consider, but it’s not the only tool. Especially when working with a child who has a rare genetic condition plus an Autism diagnosis. Other resources and tools may assist families in achieving their goals. For us this meant learning about the objectives as a family together while our daughter was mastering goals. ABA works best when it’s combined with your other resources; (i.e., current therapies in place, IEP teams, community support, etc.) as this helps generalize what is learned. We have seen our daughter transfer the skills she’s learned in her sessions into her everyday life. Our daughter, recently turned eight years old, received a skilled companion dog, and is transitioning to a general education classroom. This transition and the skills that her amazing ABA team teach her have been a blessing to her, and our family. Our daughter has been showing more affection to those she cares about. She’s able to master her goals outside of her sessions and into the community (which I am unable to express how HUGE this is). She is also able to complete her homework with modifications; additionally, she can share who she is with others instead of allowing her diagnoses to define her as others think it does.

From a logical perspective, ABA therapy is remarkable in how it allows children (no matter what the diagnosis is) to learn things that other children may more readily know. From a mom’s perspective, it’s beyond amazing. This process has provided my husband and me with the support needed so we can be her parents, instead of her providers. Partnering in this way gives us opportunities we wouldn’t be able to have without this kind of assistance. There’s a saying that it takes a village to raise a child. In the early days of our daughter’s life, my husband and I would jokingly say it takes a hospital to raise our child. As her health has become more stable, and we’ve been able to focus more on her education and life skills, we agree that in fact, it takes a village to raise a child — a properly equipped village. And we are so grateful that God blessed us with her ABA team as an addition to our village.

– by Nicole

How Long Will My Child Be in ABA?

There is no simple answer to this question. Many factors impact the decision regarding the duration of an ABA (Applied Behavior Analysis) program for a child/adolescent with autism.

Whether services are provided in a home, clinic, or school-based setting there should be a detailed plan in place to guide the family through the intervention process and resources available for when services end. The following information is provided to help parents develop appropriate expectations regarding the duration of an ABA program for a child with autism.

Although there is no cure for autism, there is an abundance of research indicating that intervention programs based on the principles of ABA can have an incredible impact on a child. The ultimate goal of any intervention program is to increase adaptive behaviors and to decrease challenging behaviors to the point the individual with autism is able to function independently in daily life. The length of time a child participates in an ABA program will depend on the type of program implemented, the child’s progress toward identified goals, and the family’s ability to use the principles of ABA in everyday life.

The Program

Intervention programs may be implemented in a variety of settings. Home-based services are often delivered as part of a comprehensive or focused program. Your BCBA (Board Certified Behavior Analyst) may make use of The Behavior Analyst Certification Board (BACB®) Practice Guidelines for Healthcare Funders and Managers to inform decisions about intervention models appropriate for your family. The guidelines state that comprehensive programs address skill deficits and behavioral excesses across many domains and focused programs target a “limited number of key functional skills”. Focused programs often occur over a shorter period of time relative to comprehensive programs.

Progress

Children vary in the time it takes to acquire new skills. Further, complex skill acquisition targets such as maintaining a conversation will often require more time to demonstrate mastery than a target such as color identification. Clinicians should closely monitor a child’s progress toward a goal to ensure learning is occurring. Clinicians should closely monitor a child’s progress toward a goal to ensure learning is occurring If the child demonstrates difficulty acquiring a targeted skill, the clinician must make adjustments to the program in order to meet the needs of the child.

There are a number of ways to monitor a child’s progress. Line graphs provide important and detailed information about a child’s learning. Criterion-referenced assessments such as The Verbal Behavior Milestones Assessment and Placement Program (VB-MAPP) and norm-referenced measures such as the Vineland Adaptive Behavior Scales, Third Edition also provide valuable information. Once the child meets the mastery criteria of all goals identified in the treatment plan, the clinician may recommend a decrease in the number of one-to-one service hours.

Parents and Caregivers

An effective ABA program includes parents and caregivers implementing applied behavior analytic strategies during everyday life. The generalization of skills occurs when the child is able to demonstrate newly developed skills in a variety of environments with different people. Generalization is critical to an effective ABA program. If parents are able to teach their child new skills and generalize those skills to new settings, they are equipped with tools to address future challenges once the ABA program ends.

Putting It All Together

The long-term outcome for every family with a child with autism is different. Some individuals with autism remain at home with family members well into their adult years. Some individuals with autism live independently and pursue a career. Some individuals with autism live with some assistance provided by vocational trainers, social workers, and/or financial planners.

Many families begin their journey with autism by having their child participate in a one-to-one ABA program. One-to-one services are ended when program goals are met and parents are equipped with strategies to support their child’s learning and generalization of skills. However, parents often make use of consultation with a BCBA to assist with problem-solving specific behavioral issues. In reality, ABA is not something that has an end date. The skills that parents develop from the hard work of implementing an ABA program evolve and are used for a lifetime. Just as parents make use of strategies to promote good physical health (e.g., healthy eating and exercise), they also make use of effective teaching and problem solving learned from their ABA program.