Considerations for Sibling Involvement in Your Child’s ABA Program

When your child’s ABA program begins, it is customized to fit the unique needs of your child and your family. Oftentimes, the family participants may only include parents and caregivers. It is important to consider sibling involvement both at the beginning and throughout the program.

We spoke with Amy Ursitti who just graduated from Emory University in Atlanta, GA after studying neuroscience and behavioral biology. Her younger brother, Jack, was diagnosed with ASD when he was two years old. She shared her firsthand experience of being the sibling of an individual with autism as well as the significant impact that ABA therapy has had on her brother and their family unit as a whole.

Amy was five years old when Jack was diagnosed with ASD. They were living in Texas when he began ABA therapy at the age of two. Their first experience with ABA was, unfortunately, not what they had hoped for. The provider had staff canceling often, and the school didn’t appear to provide individualized support for him. Amy would attend school with Jack during the summer and noticed that it didn’t feel any different from her regular school. The staff were not attentive to his needs and frequently would leave him by himself, unwilling to help or assist in any way.

The Ursitti family wanted more for Jack and did not give up. As fate would have it, their dad was offered a job in Boston, MA and they moved across the country. Once they were settled, they found a new provider for Jack and began ABA once again. This time, it was different. Jack was 4 years old and was finally receiving the high quality ABA he needed for the first time. The difference was immediately evident and the changes in Jack started straight away. Over the years, Jack was able to start communicating his wants and needs via an iPad and was able to have a response other than “yes” when asked a question. 

Jack is now 18 years old and Amy has seen the incredible progress that he’s made over the last fourteen years. There have been a lot of people that have been part of his ABA journey that have tailored his treatment to him specifically, which has made all the difference. Instead of using generic standard goals, his particular goals have been created specifically for him and his growth. He has worked on the development of skills that can be applied to his daily life so he can continue building on them to have some degree of independence as an adult.

Seeing the development of skills such as life skills has increased conversations regarding the potential for him to live independently with some support in the future. Jack loves transportation, and has a stellar sense of direction, and frequently discusses it.  Amy has recently moved to Boston for a clinical research job at Massachusetts General Hospital and one of her future hopes for her brother is that he develops the skills necessary to independently take public transportation and visit her. 

Key Learnings from High Quality ABA Services

Amy has gained a unique perspective and experience as a sibling of an individual with autism. Some of the key takeaways she has learned from high quality ABA services include the following:

• Don’t be afraid to express your needs for what is important for your family.
  This applies even when it doesn’t necessarily align with the professional’s clinical recommendations. Bringing up these needs in conversation can help to address them. The individual’s program can be built upon and around working to meet these goals. This will ultimately lead to a better quality of life for your child and your family.
• Get as many sources of information as possible before selecting a provider or deciding if ABA is the correct therapy for your child.
  ABA services vary depending on what your child’s needs are. It’s important to have a provider that will work with the entire family on setting goals and ensuring that the goals are tailored to the individual. ABA is not a one-size-fits-all therapy. One provider may be better for a child than another, and that’s ok.  Similarly, the experience your family may have had with one provider may not be the same with another.
• Involve the whole family in the conversation. This includes siblings.
  Addressing the entire family as one unit is critical to your child’s success. Siblings can have a significant impact on growth during the program. Families can rely on each other as the program progresses and support each other in implementing programming goals.Amy notes that it shouldn’t be assumed that siblings are too busy or don’t want to be involved. She wanted to know what the plan was for Jack and work on skills with him that she could be involved in. Now that they are both adults, she appreciates the alone time they have together as brother and sister. She can drive him to school and has recently had an opportunity to stay home with him while their parents went out. She feels confident in being able to meet his needs with the skills she’s learned.
• ABA can improve who the individual is and the relationships they develop.
  Amy was able to get to know Jack better because of high quality ABA. He’s able to communicate more effectively and his personality, likes, dislikes, wants and needs are able to shine through. She is grateful for and couldn’t imagine having a different relationship with her brother after their experience with ABA.
• Be curious, be kind.
  If people have had a bad experience with ABA in the past, be curious about their experience and take time to really listen. It’s helpful to ask questions to have a full understanding of what they went through without making assumptions or generalizations.
• Be ready for anything.
  Every day is different.  Over the years, Amy and her family have created an unspoken language to communicate with each other. They fall into a routine where they don’t have to say anything to each other, based on the experience Jack is having. They’ve learned how crucial it is to stay calm and have one person address him at a time. In doing so, they’re able to share the responsibilities and create a solution. Together, they’ve learned to improve the situation and how he’s experiencing his surroundings and every day routines. Their call to action is different and better because of ABA.

High quality ABA therapy changed the lives of Jack, Amy, and their parents. Jack is now the most authentic person that Amy knows. Having a provider who worked with the entire family and set goals that were specific to Jack has made all the difference. Amy has seen an enormous amount of growth not only for her sibling, but also for her family.