What Happens When I’m Not Here? A Looming Question for Many Parents of Children with Special Needs

Categories: ASD and DD, Adult-focused; ASD and DD, Child-focused

By Julia Iannaccone, Ph.D., LABA, BCBA-D                                         

[This column was published in the West Springfield Republican on July 21, 2022 and in the Daily Times Chronicle on August 22, 2022.]

When a child is first diagnosed with autism, the list of worries for a parent/guardian is extensive. One question typically on this list is, “Will my child grow out of it?” While the term “grow out of” might oversimplify the hours of effective, evidence-based therapy children with autism receive throughout their youth, some do grow up similarly to their neurotypical peers. They go to college, have a job, and even settle down with a family. 

As most parents/guardians of children with autism know, however, autism is a spectrum disorder. There is also the possibility that their child may continue to need significant supports as they grow into adulthood. This is also true for children with related disorders and intellectual disability. Even when parents/guardians make every correct decision, choose the best therapies, and do everything possible to promote independence, some children may always need a caregiver. 
For parents/guardians of these children, another question looms in the background: “What will happen to my child when I’m no longer here?” 

Any individual who meets the criteria as an “incapacitated person” will always have a legal guardian. It is important for parents of children who will likely need a guardian to know that they will not simply be given guardianship when their child enters adulthood. Any person wishing to become a guardian must file a Petition for Guardianship form and be appointed by the Probate and Family Court. If a petition is not filed, a guardian will be appointed by the court.

For parents worried about what will happen to their child when they are not around, the process of obtaining guardianship is not the primary concern. Rather, “Who will be the guardian?” is the question causing anxiety. 

For many parents, an obvious choice is a sibling. Siblings are often each other’s first peer relationship, and for many, their first life-long friend. This is no different for families with a member diagnosed with autism or a related disorder. When parents consider who could be trusted to look out for the best interests of their child, a sibling is often the answer.

While the job of caring for an individual with special needs is often rewarding, and filled with joy and love, it can also be stressful. Making important life decisions, ensuring quality care is provided, and coordinating meaningful activities for another person can be emotionally taxing. Therefore, considering giving this task to another one of their children can make parents feel guilty.

As a clinician who serves adults with autism and related disorders, I work with guardians who are parents, siblings, extended family members, family friends, and court appointed. Guardianship is a unique and very individualized relationship. It could involve having the person with special needs living in your home, or just checking in with them at their group home or other residential setting. It could involve taking them on vacations or monthly trips to the movies. It could involve coordinating all aspects of care or entrusting those tasks to a professional agency. Regardless of the guardian, each individual under the care of a service agency receives the same treatment.

As a sibling of an adult brother with autism, I can tell you that if you are a parent or sibling feeling worried about the future, the best thing you can do is to talk about it. My parents told me that I would one day be responsible for my brother’s care when I was in high school, but I knew much sooner. I have never viewed my brother as a burden that will fall upon me one day, but rather a privilege that I am honored my parents are entrusting to me. He is an outstanding young gentleman and I look forward to growing older with him and the rest of my family. I hope anyone taking the care of a sibling feels the same. 
Julia Iannaccone, Ph.D., LABA, BCBA-D, is the Director of Clinical Services and Training at May Institute, Adult Services. She provides clinical services throughout the state including the Western Massachusetts region. She can be contacted at

About May Institute
May Institute is a nonprofit organization that is a national leader in the field of applied behavior analysis and evidence-based interventions, serving autistic individuals and individuals with other developmental disabilities, brain injury, neurobehavioral disorders, and other special needs. Founded nearly 70 years ago, we provide a wide range of exceptional educational and rehabilitative services across the lifespan. For more information, call 800.778.7601 or visit