When an autistic child approaches 18, families face a critical decision about their loved one’s legal future. Should they pursue guardianship, or is there a better alternative? Understanding the difference between guardianship and supported decision-making (SDM) can help families make informed choices that preserve autonomy while providing necessary support.
What Is Guardianship?
Guardianship is a legal arrangement where a health care guardian has the legal right to make health care decisions for another person, with full permission to access records and communicate with providers. Full adult guardianship essentially means the person under guardianship—the ward—is stripped of many, in some cases most, of their legal rights to act independently.
Once guardianship is established, the court could terminate your child’s right to vote, make decisions about where they want to live, and limit their right to consent to medical care. This represents one of the most significant civil rights restrictions that can be imposed on an American citizen.
Types of Guardianship
Guardianship arrangements vary by state, but generally include:
- Full guardianship: Complete decision-making authority over personal and financial matters
- Limited guardianship: Authority over specific areas while preserving other rights
- Guardianship of the person: Decisions about healthcare and living situations
- Guardianship of the estate: Management of financial matters only
What Is Supported Decision-Making?
SDM is an alternative to guardianship where a person like me, a “decision-maker,” picks a group of people they trust to help them make their own decisions. Unlike guardianship, SDM allows autistic individuals to retain their legal rights while receiving support.
Supported Decision Making is an alternative to conservatorship, guardianship, or power of attorney for individuals with disabilities, including autism, who need help making important decisions but do not want to give up their legal rights.
How SDM Works
In a supported decision-making arrangement:
- The individual chooses trusted supporters (family members, friends, therapists, mentors)
- Supporters help gather and explain information
- The individual makes the final decision
- Supporters assist in communicating those decisions to others
The individual needing support creates a network of trusted people to help them understand their options and make informed decisions, and the individual can express their preferences and goals while supporters help achieve them.
Key Differences Between Guardianship and SDM
Decision-Making Authority
The most fundamental difference lies in who holds decision-making power. With guardianship, the guardian makes decisions for the individual. With SDM, the autistic person retains decision-making authority and simply receives support in exercising it.
Legal Rights
Guardianship strips away many legal rights to act independently, while SDM preserves full legal capacity. This means individuals using SDM can vote, choose where to live, make medical decisions, and enter into contracts.
Flexibility and Reversibility
A person can change or add supporters at any time in SDM arrangements, providing flexibility as needs evolve. Guardianship, by contrast, is difficult to reverse or modify once established.
State Recognition
Currently, only a few states recognize SDM as a legal option, though the number is growing. Families should research their state’s laws to understand available options.
The Movement Toward Alternatives
Guardianship decisions and the rules governing them are under review in many states as autistic self-advocates raise concerns about their right to make their own decisions. National disability policy is increasingly emphasizing self-determination and the rights of people with disabilities.
The National Council on Disability has examined guardianship extensively, finding that people with disabilities are often denied due process rights in guardianship proceedings, and although most state laws require consideration of less-restrictive alternatives, courts do little to enforce those requirements.
When to Consider Each Option
Guardianship May Be Appropriate When:
The person cannot consistently make decisions that help them stay safe, faces potential for serious exploitation, or is unable to cooperate with less restrictive supports. Caregivers for people with autism who interact with their clinicians are often required to become guardians so that they can do things like make appointments, access medical records and make important decisions in an emergency.
SDM May Be Appropriate When:
The individual can make decisions with support, wants to maintain independence, and has trusted people available to serve as supporters. SDM enables individuals to be the CEO of their own life—just like most other people.
Real-World Success with SDM
Jonathan Gardner, a 21-year-old with autism, shares his experience: Instead of a guardian, he uses supported decision-making, and would not be the person he is today without SDM. His story illustrates how SDM can empower autistic individuals to direct their own lives while receiving necessary support.
Making an Informed Choice
The decision between guardianship and supported decision-making is deeply personal and depends on individual circumstances. Consider:
- Your loved one’s abilities: What decisions can they make independently? Where do they need support?
- Available supporters: Who can serve as reliable, trustworthy advisors?
- State laws: What alternatives are legally recognized in your jurisdiction?
- Future flexibility: How might needs change over time?
Whenever possible, guardians are obligated to give their autistic family member a chance to understand and weigh in on all decisions. Even within guardianship, incorporating SDM principles can promote greater autonomy.
Conclusion
Autism guardianship is a decision with major repercussions; for some parents, however, it may seem like the only choice offering maximum protection for their almost adult child with developmental disabilities. However, supported decision-making offers a compelling alternative that preserves rights while providing support.
Families should explore all options, consult with attorneys familiar with disability law, and most importantly, include their autistic loved ones in the conversation. The goal is finding the right balance between protection and autonomy—one that honors the individual’s capabilities while ensuring they have the support they need.
References
- Harvard Medical School – Adult Autism Health Resources. “Legal guardianship for autistic adults.” Available at: https://www.adult-autism.health.harvard.edu/resources/guardianship-for-autistic-adults/
- WBUR Cognoscenti. “I’m an adult with autism. I built a team to help me make decisions.” Jonathan Gardner and Sarah Boonin, January 18, 2024. Available at: https://www.wbur.org/cognoscenti/2024/01/18/autism-guardianship-supported-decision-making-massachusettsjonathan-gardner-sarah-boonin
- Autism Parenting Magazine. “Autism Guardianship and Alternatives to Consider.” Available at: https://www.autismparentingmagazine.com/autism-guardianship-alternative/
- National Council on Disability. “Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination for People with Disabilities,” March 2018. Available at: https://www.ncd.gov/report/beyond-guardianship-toward-alternatives-that-promote-greater-self-determination-for-people-with-disabilities/
- The Autism Community in Action (TACA). “Legal Planning and Autism.” Available at: https://tacanow.org/family-resources/legal-planning-and-autism/
