My parents are getting older, and I would like to be more involved with my adult sister who has autism. How can I best support my parents and sister, as well as the program team, as we all get older?

Lara Redcay, MEd, BCBA, Amanda Duffy MEd, BCBA, LBS, Kristina Gasiewski, MOTR/L, MEd, BCBA
Melmark PA

adults with autism at home

Photographed by Ron Lach (pexels.com)

That’s a thoughtful and important question, and it’s great that you’re thinking proactively about how to support everyone involved. As our parents get older, it’s natural to start thinking more about the future. What it will look like, and how we can show up for the people we love. Your involvement in your sister’s care can provide both stability and reassurance for your sister and peace of mind for your parents. This your parents. And it starts with connection.

A good first step is to orient yourself to the care your sister currently needs. Have a conversation around your sister’s care routines, medical needs, daily schedule, and long-term hopes or plans. Ask your parents about legal documents like guardianship, power of attorney, or special needs trusts and funding sources, if they exist.

Transitioning from a sibling to a prospective caregiver sibling is a large adjustment, and it can be difficult learning the ins and outs of becoming more involved with your sister’s care team. Spending more time with your sister can help with getting to know her day-to-day life.  Learn what she enjoys, what she struggles with, how she communicates. Let her get used to you being around more often. Even small steps like visiting her program, going out for lunch, or doing something familiar can all build trust and comfort amongst your sister and her care team (your parents included).

Your sister likely has a team that helps support her, such as program staff, a case manager or support coordinator, maybe even therapists. Obtain appropriate releases to communicate with them and let them know you’d like to become more involved in her care and planning. You can attend team meetings in which they review goals, progress, and needs.

You don’t need to be an expert. What matters most is showing up with love, curiosity, and the willingness to learn. Your sister might not always be able to tell you what she needs, but being present, paying attention, and leaning on her team will help you find your way. You’re not in this alone. And every step you take brings comfort to your parents, stability to your sister, and a sense of purpose to you.

Addressing living arrangements  

You may be asking yourself what living arrangements could look like for your sister in the future. Maybe she’s living at home now with your parents, and you’re wondering where she might live in the future. These conversations, especially with your parents and sister, can feel a little uncomfortable at first, but they’re important to have.

A good place to start is by thinking about the kind of support your sister might need, including medical, financial, and day-to-day living. Understanding this can help guide your family as you explore different options together. If staying at home long-term doesn’t seem like the best fit for your sister or you, there are other types of support to consider, such as facilities or community-based programs. These can provide a higher level of care depending on her needs.

For example, in a facility setting, trained staff provide all the support services. There are a few different options available when it comes to residential placements that are more specific to the area where your sister would be living. Another option might be a community residence on a campus setting or out in the community. Some residential models consist of people with disabilities living together, supported by trained staff who help with activities of daily living and community involvement. Some homes are designed specifically for autistic individuals, while others are more general. These homes are typically run by agencies that also handle hiring and training of staff. Costs can be covered through a mix of public benefits (like Medicaid or Social Security), the individual’s income, and sometimes contributions from family. Early planning is a critical element in the long-term care for your sister due to the scarcity of the resources available for this population currently.

These are just a few of the possibilities. The most important thing to remember is that your sister’s living situation doesn’t have to be a one-size-fits-all or set in stone. It can evolve as her needs and life circumstances change. A great first step is reaching out to her Support Coordinator, who can walk you through the options available in your area and help you plan for what comes next. There are also advocates and special needs attorneys who can help navigate the complexities of residential placements for your sister.

Who Can Support Your Efforts

Beginning the transition to assume a greater role in your sister’s care can be extremely overwhelming, especially while navigating the complex ever-changing needs your sister may have. One thing to remember is that many professionals are ready to help you navigate the challenges that come with supporting an aging autistic loved one. One takeaway that I hope you remember throughout is that your sister’s needs are going to be changing. It may be frustrating for her as well as for you, but the way to make this transition as easy as possible is to ensure that you are meeting your sister where her needs are today,

Here are some of the options for team members and how they can support your sister and you. This list is not exhaustive or required, but these disciplines are extremely beneficial and can help support changing needs.

      • Support/Service Coordinators or Case Managers
        These are advocates who are responsible for navigating conversations, ensuring that your sister’s needs are met, that her provider is providing the required services, as well as ensuring that your sister and your family are happy with the care that she is being provided. They quite literally coordinate the supports for individuals. To obtain a support coordinator it is recommended to start with talking to the local disabilities office in your area, for example Advocacy Resource Center (ARC) which has over 600 state and local chapters in the United States. The ARC can help to identify which resources are available to you and your sister and point you in the direction of service coordinator. Additionally, you don’t need to pay for their services and support.
      • Rehabilitative Professionals
        One of the biggest challenges that your sister will experience is her body changing. If she isn’t already experiencing physical changes, she might soon. The rehab team can help your sister maintain her independence for as long as possible. The physical therapist can help with gait changes, providing exercises to encourage strength, but also supporting access to adaptive equipment like canes, walkers, wheelchairs, hospital beds, etc. An occupational therapist can offer support and consultation in adaptive equipment. Speech language pathologists will be able to help with support communication modalities, different swallowing and eating challenges and changes.
      • Behavior Analysts
        Behavior Analysts (BAs) bring a variety of skills to the team. A behavior analyst is a professional who utilizes the principals of behavior analysis in socially significant ways. This might include supporting a team to decrease unwanted behaviors and increasing behaviors such as communication, socialization and activities of daily living.  These professionals are specifically trained to assist with plan development and offer a broad array of technical skills, including support with data collection. This data can document behavioral, cognitive, physical, and adaptive changes your sister may be experiencing. Such information can be shared with her medical doctors to highlight these changes, supporting more informed diagnostic decisions and potential medication adjustments. Additionally, the behavior analyst can develop plans to support your sister as her needs change and in her ability to complete different aspects of her day-to-day life. For example: being able to get dressed on her own, washing her body, etc.
      • Medical / Clinical Professionals
        The medical team can be extremely helpful. Primary care physicians can assist with health maintenance, annual physical exams and other routine care, while also recommending specialists that may be needed as your sister ages. For example, neurologists can help with dementia diagnoses, psychiatrists can help with agitation, depressive and anxiety symptoms, and psychologists can help with talk therapy (if this is something your sister could benefit from). They would also help navigate and coordinate with hospice and palliative care teams, if that is a part of the long- term plan.

Planning for the future

Some families seek guardianship of their disabled loved one. This is a court-appointed role that allows a person or group of people (co-guardianship) to make decisions for someone that has been deemed not to have the capacity to make routine and emergency decisions (e.g. legal, medical, financial) for themselves. This can be an expensive and complicated process. The first step of the process is to file a petition with the court identifying why guardianship is needed.

Another avenue might be determining who will take over the “power of attorney” (POA) that may include a more limited scope of decision-making and/or tasks on behalf of the person. This process is less complex, more straightforward to remove/add as needs change, and less of a financial burden.  Because the differences between the two approaches differ, a breakdown between Power of Attorney and Guardianship is offered although it is always best to seek legal advice:

Guardianship

      • What it is: A court-appointed role that gives a guardian the legal authority to make decisions for someone deemed unable to make decisions for themselves in areas such as legal, medical, and financial matters.
      • Process: Begins with filing a petition in court explaining why guardianship is needed. It can be expensive, time-consuming, and legally complex.
      • Authority: The guardian’s decisions override those of the individual (because the court has determined the person lacks decision-making capacity).
      • Best suited for: Individuals who cannot understand or communicate important decisions, and where there is a need for full, ongoing decision-making support across multiple life areas.

Power of Attorney (POA)

      • What it is: A legal document that allows one person (the agent) to make certain decisions or handle specific tasks on behalf of another person (the principal).
      • Process: Simpler, less costly, and easier to update or revoke as needs change.
      • Authority: The principal’s decision takes priority if they disagree with the agent, if they still have decision-making capacity.
      • Best suited for: Individuals who can make most decisions independently but need assistance with specific areas (e.g., financial transactions, medical forms) or during temporary periods of incapacity.

Addressing Feelings of Guilt

Oftentimes, many caregivers of individuals with autism struggle with feelings of guilt. There may be guilt about your sister’s changing needs, guilt about your ability to care for your sister, and even guilt brought on by pressure from others. Please remember, these feelings are typical. At the same time, they are completely unwarranted. Your sister’s needs and abilities are the result of factors outside your control, such as her unique neurology, medical conditions, or developmental differences. Caring for someone with autism is complex, and no caregiver can meet every need perfectly at every moment. Feeling guilt often comes from holding yourself to unrealistic expectations, comparing your situation to others, or internalizing societal pressures. Your love, advocacy, and presence are what matter most..

One thing that may be beneficial is to seek out other siblings of individuals with autism, through avenues such as social media  (Facebook, Instagram etc.), your sister’s Supports Coordinator may have resources, medical professionals (both your sister’s medical team and your medical team) your local, county, and state government entities may also have resources available. Sharing similar experiences can help cope with all the changes occurring throughout life, and the feelings that derive from them. You don’t need to take this on alone. Think of the commonly used metaphor, when you are on a plane the flight attendants tell you put on your own mask first before helping others, because you cannot take care of others if you are not taken care of.

Conclusion

Lastly, as you orientate your sister’s care, there are professionals, other caregiver siblings, and your parents who are ready to help you learn this new role as a caregiver for your sister. You are doing a great thing in supporting your sister and your parents as you all continue to age.

Reference for this article:

Redcay, L., Duffy, A., & Gasiewski, K. (2025). Clinical Corner: How can we best support adults with autism, their families and teams, through the aging process at home?  Science in Autism Treatment, 22(9).

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#Adults #OtherFamilyMembers #Researchers #Siblings #Transitions

 

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