• Brother and sister with their arms around each other

A toolkit offering guidance, practical ideas, and resources for adults who have an Autistic sibling.

Our Care Continuity Guide is a fillable template for parents and caregivers of adults with disabilities to gather essential information all in one place. Click here to access the guide.

Although the term sibling is used throughout for consistency, this toolkit is intended for a range of people, including:

  • Adults with an Autistic sibling who is an adult or approaching adulthood.
  • Any extended family member of an Autistic adult who is involved (or would like to be involved) in their life, such as a cousin, aunt, nephew, or even a close family friend.
  • Parents who want to encourage strong relationships between their Autistic adult and their siblings (or extended family members), or who are planning to eventually transfer care responsibilities to a sibling or another second-generation relative.

As you begin exploring this toolkit and thinking about your future role, it’s not unusual to feel overwhelmed by the potential responsibility for your sibling. We encourage you to take a deep breath and approach it one step at a time. You might start by asking your parents to gradually share information with you, perhaps by joining the occasional meeting with funders or service providers, or by being part of conversations when decisions are being made. This gradual approach can make things feel more manageable, and will help ease the transition when your parents are no longer able to provide care or guidance. It also allows you to learn and prepare at a calmer, more comfortable pace.

Remember: Autism is a broad spectrum. Your sibling might be mostly independent and need only minimal support. Or they may face additional challenges—such as an intellectual disability or medical condition—and require daily support in multiple areas of life. Of course, many fall somewhere in between.

Building a Connection

A young brother and sister playing a video game together.

As you begin to shape your own life, whether you’ve moved out or still live at home, you may find that you and your sibling spend less time together. Pursuing post-secondary education, starting a career, finding a place to live, and building friendships and community can understandably take up much of your time.

Whatever your current circumstances, it’s never too late to rekindle your connection with your Autistic sibling. It’s important to schedule time together, whatever that may look like. Life is busy, and sometimes “see you soon” turns into weeks or months. Although unique opportunities may pop up without much notice, if you schedule regular time together, that predictability may help your sibling feel more secure and give them something to look forward to.

Whether you live nearby or far away, there are always meaningful ways to stay connected. Don’t hesitate to suggest activities that may be outside of your family’s usual routine. You may even find yourself starting a meaningful new tradition. Here are some ideas to get you thinking. Activities marked with an asterisk (*) can be adapted for long-distance connection through phone or online/virtual options.

  • Join a club or class you both might enjoy. *
  • Participate in something active like bowling, swimming, pickleball, or riding a bike.
  • Visit regularly, just to chat and catch up. *
  • Attend annual events such as summer fairs, winter carnivals, or holiday celebrations.
  • Play a board game or video game together. *
  • Invite your sibling to attend your child’s school play, sports tournament, dance recital, or graduation.
  • Watch a fun weekly TV series together. *
  • Check out local garage sales on the weekend.
  • Teach each other about your special interests. *
  • Go out for a meal, or prep and cook a meal together at home.
  • Collaborate and plan a special occasion for a family member. *
  • Ask your sibling for help with a project at your home, like redecorating a room, building a bookcase, planting a garden, or organizing your garage.

Planning

Planning for your sibling’s future can involve many different aspects. While your parents may currently be taking the lead, it’s a good idea to express your interest in getting involved, especially while they’re still available to share information and guidance. Staying in close contact with them can help you stay informed, as changes can happen quickly. As your role evolves, here are some topics you may want to contemplate, since your level of involvement is likely to grow over time.

Determine, as best you can, what your Autistic sibling wants for their life.

  • Where do they want to live?
  • What kind of job or volunteer work interests them?
  • What activities bring them joy?
  • Who do they enjoy spending time with?

Consider the level of daily support your sibling requires. Do they need:

  • full-time care
  • participation in a structured day program
  • light assistance with specific tasks

Some may require the presence of a support aide to safely engage in employment, work experience, volunteer roles, or community activities. Others may be largely independent and thrive with occasional guidance or check-ins.

You’ll likely want to stay meaningfully connected to your Autistic sibling, but recognize the need for balance with your own life.

  • If you have a spouse or children, while they may be supportive, you’ll need to figure out the details of how and when your sibling fits into your family’s lives.
  • If you live some distance away, involvement might mainly be through scheduled visits, calls, and advocacy.
  • Does your job have some flexibility that allows for occasional sibling support?

Either way, keep in mind the importance of building a wider support network if possible, by including other family members or close friends

It’s important to plan ahead. Will your sibling remain in the family home with (with support if needed) once your parents are no longer able to provide care?

If not, options may include:

  • moving into a group home with support services
  • living with you or other family members
  • finding an independent living arrangement with appropriate supports

If your sibling is interested in post-secondary education or finding a job, what might that look like for them?

Will they be able to drive or take public transportation to get there?

They may also need workplace or academic accommodations to help them succeed and reach their potential.

Who will regularly spend time with your Autistic sibling?

  • Do they have existing friendships that can be maintained?
  • Are there other siblings, cousins, or close family friends who might be able to play a bigger role?

Social programs, clubs, or activity groups could also provide meaningful connection and engagement.

This can include:

  • routine visits to doctors, dentists, and specialists
  • mental health needs
  • managing medications

These requirements will evolve as your sibling ages, and eventually enters older adulthood.

A brother and sister with a map and a globe

Planning Resources

Sinneave Family Foundation’s Launch + Skills is a coaching service designed to empower Autistic individuals and those with neurodivergent traits, to assist them in pursuing further education, employment, or independent living.

The Plan Institute has a Future Planning Tool. Use it to build a plan to help you secure the future for you or anyone with a disability.

Decision Making

If your sibling is unable to make decisions independently, different levels of support are available to help manage their affairs. Your parents may already have some of these supports in place, which could eventually need to be transferred to you. In Alberta, the Office of the Public Guardian and Trustee (OPGT) provides services, information, and resources related to guardianship services, trusteeship services, capacity assessment information and court applications. Depending on your sibling’s needs, here are some options you may want to explore (Click on each for more information):

Supported decision-making

An adult with capacity can choose a trusted person to assist them with accessing information and communicating their decisions.

Specific decision-making

A one-time decision made for an adult who has lost the capacity to make health care and residential facility placement decisions.

Co-decision-making

Sharing decision-making with an adult who requires some assistance because of a loss of capacity but can make decisions with support.

Adult guardianship

Decisions are made on behalf of an adult who does not have capacity. This does not include financial decisions.

Trusteeship

A trustee makes financial decisions on behalf of an adult who does not have capacity. This includes income, investments, and real estate.

NOTE: In Alberta, it is possible to have more than one guardian appointed for an adult. This is known as co-guardianship. Similarly, two or more individuals—often family members—can be appointed as co-trustees to manage the financial affairs of an adult who is no longer able to do so independently. For more information, contact your lawyer or the Office of the Public Guardian and Trustee.

Decision-Making Resources

A woman standing infront of a chalkboard with arrows coming away from her head.

The Government of Alberta website for the Office of the Public Guardian and Trustee (OPGT) has detailed information. You can explore it HERE.

Autism Society Alberta offers a recorded presentation series called Who Will Take Care of Our Kids? The series covers important topics like guardianship, trusteeship, power of attorney and personal directives, and wills. Watching these presentations may help deepen your understanding of these subjects. You’ll find them HERE.

The Children’s Link Society supports families caring for a young adult with a disability who is transitioning into adulthood by offering Guardianship & Trusteeship Application Services in Alberta. You’ll find more details here.

Financial, Funding, and Taxes

Although your parents or your Autistic sibling may have already done some research and applications, it’s still a good idea for you to learn about what’s out there too. For people with disabilities, there are various funding programs, savings plans and tax breaks that are available if you are eligible. To learn more about each, check the links in the descriptions and explore the list of resources below.

The Persons with Developmental Disabilities (PDD) program helps eligible adults plan, coordinate and access services to live as independently as they can in their community. To be eligible for PDD you must have a developmental disability that originated before you were 18.

The Canada Disability Benefit (CDB) provides direct financial support to people with disabilities who are between 18 and 64 years old. The program is administered by Service Canada.

The Assured Income for the Severely Handicapped (AISH) program provides financial and health benefits for eligible Albertans with a permanent medical condition that prevents them from earning a living.

The Alberta Disability Assistance Program (ADAP) will empower Albertans with disabilities to pursue fulfilling job opportunities while continuing to receive the financial, medical and personal supports they need.

The Disability Tax Credit (DTC) is a non-refundable tax credit that helps people with disabilities, or their supporting family member, reduce the amount of income tax they may have to pay.

The Registered Disability Savings Plan (RDSP) is a long-term savings plan to help people with disabilities who are approved for the disability tax credit save for the future. When you open a plan, you may also get grants and bonds from the Government of Canada to help with your long-term savings.

Financial, Funding and Tax Resources

A stack of loonies

Savvy Siblings: Strengthening the Financial Security of Your Sibling with a Disability is a free, self-paced, online course by Siblings Canada that empowers Canadian adults to build financial security for—and with—their siblings with disabilities.

Check out our recorded presentation, Understanding the Disability Tax Credit (DTC) & Registered Disability Savings Plan (RDSP). You can also read our Applying for the DTC & RDSP’ toolkit.

The Centre for Public Legal Education Alberta has a recorded webinar called Putting Together a Successful AISH Package.

Autism Calgary has an information page regarding PDD on its website. You can take a look, HERE.

Autism Society Alberta has a six-part series of recorded presentations called Disabilities & Finance that you may find helpful. Clicking on each title below will take you to the video.

Mental Health for Supporting Siblings

An older woman smiling and pointing to her head. Definitely in good mental health.

Whether you’re involved in your Autistic sibling’s life through regular visits and shared activities, or you’ve assumed care or guardianship, maintaining your own mental health benefits both of you.

  • Recognize that your emotional and psychological well-being is important to continue good relations with your sibling. Make it a priority.
  • Reflect on both the joys and the challenges of your connection with your sibling. Learn more about autism, especially your sibling’s specific autistic traits. This may help you to feel calmer and more confident.
  • Create healthy boundaries and maintain balance. Your life includes many important aspects: your own well-being, your siblings, your partner and children, your work, and other commitments. Strive to schedule time and care across these areas to support an overall balance beneficial to your mental health.
  • Learn about strategies, support, and resources that may help you maintain a healthy mindset. This could include downtime for yourself, joining a sibling support group, doing activities that energize you with positivity, or getting counselling if needed.
  • Don’t do it alone. If possible, involve other siblings, extended family, and friends in the well-being of your sibling.

Mental Health Resources

A Guide on Mental Health for Adults Who Have Siblings with Disabilities: This guide has been compiled for AIDE Canada by The Sibling Collaborative.

Sibs (in the UK) has a comprehensive eBook called Self-care for Siblings. You can request a copy be sent to you via email.

Acceptance and Commitment Training (ACT) helps adult siblings of people with disabilities build resilience and struggle less with the difficult feelings and events in their lives. Siblings Canada hosts ACT workshops, which are held virtually twice a year, usually in the fall and the spring. You can watch the 13-minute information presentation and add your name to the waiting list.

Resources

Sibling Collaborative Guidebooks: A Guide to Communicating with Family for Adults Who Have Siblings with Disabilities: This guide from AIDE Canada is for adults who have a sibling with a disability who want to learn how to start or navigate sensitive conversations about the future with their family members.

Siblings Canada (an initiative of the Canadian Centre for Caregiving Excellence) exists to ensure that Canadian siblings are recognized, valued and supported.

‘SibNet on Facebook’ is a Facebook group, created by the Sibling Support Project, where adult siblings of people with disabilities and other developmental and health concerns from around the world share information and discuss issues of common interest.