Guardianship and Other Options for Adults With Autism

Throughout most of the United States, an individual is considered to be capable of making many adult decisions for themselves when they reach the age of 18.

In most states, a young person can start making decisions without the need for a parental consent between the ages of 18 and 21. These decisions can pertain to finances, education, and health care.

However, not all young adults are prepared for the responsibility of making these decisions. Even as they grow up and are legally considered adults, some children who are on the autism spectrum will never develop the skills necessary to manage complex personal and legal transactions.

As the parent of an autistic individual, you have several options. Full guardianship is the most drastic, but not the only, solution. A family will need to consider all the factors relevant to someone's situation. Ultimately, people want to be empowered to make decisions based on realistic expectations and real-world concerns—not out of fear.

Why Worry About Guardianship?

Parents of children with disabilities sometimes assume they will always have the authority to make decisions on their child's behalf, especially if their child does not have the intellectual ability to understand their rights. Parents may wonder if they even need to worry about guardianship if their child will never make decisions for themselves.

The answer to this question is simple: once the child reaches the age of majority in your state, they are considered a legal adult. That means, for example, that you will no longer have the right to be in the room with them during a medical examination unless they specifically grant permission. Parents will also no longer have the right to insist that a child goes to, or stays in, school if they refuse. 

There are also potential financial and legal ramifications once a child comes of legal age. For example, if a child signs a contract (even if they don't understand it) the contract is binding.

Guardianship and other legal arrangements or agreements can be extraordinarily helpful as someone begins to interact with the "real world" as an adult.

As a parent, having such an arrangement in place will ensure that you have:

• The ability to help a child make smart legal and financial decisions
• The ability to be present and involved with medical decisions for a child
• The authority to sign contracts, government documents, or agreements on a child's behalf

Whether you opt for guardianship or another legal arrangement to help an adult with a disability manage their life, you should be ready to take action before the child reaches the age of majority in their state of residence.

If you wait weeks or months after the birthday on which the child comes of age to make plans, there may not be any repercussions. However, families should be aware that if an emergency arises and planning is left to the last minute, families won't have the legal ability to step in and help.

Guardianships, Proxies, and Powers of Attorney

Guardianship is just one way to protect one's ability to help a child negotiate the adult world. People both with and without disabilities make use of legal documents such as powers of attorney and health proxies to protect their individual needs and rights. You'll need to decide what level of protection is right for each loved one and family situation.

Guardianship

Guardianship is a legally authorized relationship between a competent adult (the guardian) and an incapacitated adult (the ward). A legal guardian has all the rights and responsibilities of a parent, while the ward has no such rights or responsibilities.

There are two types of guardianships, though most parents take on both roles.

• Guardian of the person: The individual manages a disabled adult's personal needs ranging from day-to-day financial and medical decisions to procuring food, clothing, and shelter.  
• Guardian of the estate or guardian of the property: The individual is exclusively responsible for handling a disabled adult's financial concerns including managing an estate, property, or will.  

Guardianship is an extreme measure. There are specific requirements that must be met and the arrangement must be agreed to by a judge in a court of law. When you become a child's guardian, one takes on legal responsibility for their daily and financial needs.

Depending on the state, an adult child may lose most, if not all, of the rights of adults in the United States. For example, the child may lose the right to:

• Vote
• Get married
• Serve on a jury
• Make a legally binding will
• Apply for any kind of license (fishing, driving, etc.)

In certain situations, guardianships can be reversed. Usually, a party involved in the agreement (the guardian, the ward, or a third-party acting on the behalf of the ward) petitions the court. A judge may decide to terminate the agreement if they feel it is in the best interest of the ward to do so.

Proxies and Powers of Attorney

Health proxies and powers of attorney are legal documents that provide one adult with the ability to act for and make decisions for another adult. Many people have powers of attorney and health proxies "just in case" they become unable to make decisions for themselves.

For example, what if you happen to be on a cruise when an important document needs to be signed? Or if you are unconscious after a car accident and unable to make decisions about medical care? In such cases, health proxies and powers of attorney grant the right to take action or make decisions on one's behalf to an individual of their choosing.

When an adult with autism can make some decisions on their own but needs help with others, health proxies and powers of attorney are often used as a substitute for guardianship. These arrangements offer a compromise, as they avoid stripping the individual of their rights as an adult, which can leave them vulnerable to legal challenges or abuse.

Along with a Special Needs (Supplemental) Trust to protect the child's money and a Representative Payee to accept and manage Social Security payments, these documents may be enough to ensure a child's well-being.

Other Legal Approaches to Safeguarding an Adult With Autism

In addition to guardianship, proxies, and powers of attorney, a family may want to consider the other options for ensuring an adult child's legal and personal safety.

• You may want to think about appointing a permanent or temporary Guardian or Conservator who is responsible for handling specific decisions. This appointment can be permanent or for a short period of time.
• You can create a joint bank account in your name and the child's name.
• The adult child can create an Appointment of Advocate and Authorization, which allows them to designate someone to advocate on their behalf when interacting with agencies like the Department of Developmental Services (DDS), the Department of Human Services (DHS), Medicaid, and the local authorities.

When Is Guardianship the Right Choice?

Autism exists on a spectrum, and most of the decisions parents make on behalf of a child can also fall within a wide range. The decision may be easier to make if a child is at one end of the extreme (either they are severely disabled or mildly autistic).

However, most people with autism fall somewhere in the middle. For example, they may do well in predictable situations but are unable to cope in unexpected situations or emergencies. Many people with autism are extremely intelligent but would have a hard time determining whether someone asking them to sign a paper really has their best interest in mind.

When Guardianship Is Usually a Good Choice

Guardianship is an ideal option for some people with autism. Typically, guardianship is appropriate for an individual with severe intellectual disabilities who is unable to understand or meet their own daily needs, make informed health or financial decisions, or sign a document with a full understanding of its implications.

Parents may worry about how an adult child will feel about guardianship. Parents should make it a priority to have a conversation about guardianship and ascertain their child's understanding of their rights as well as their opinion of the situation.

A judge may find it more straightforward to grant guardianship to the parents of an adult who is unable to speak or understand spoken language. While it may be true that some with severe autism are not aware of their abstract rights and wouldn't feel injured by having those rights taken away, parents can't assume that's the case.

It's not uncommon for people on the autism spectrum to have a much deeper level of understanding and ability than is outwardly expressed or apparent. It may be that communication is more effective with help from technology. Parents and those advocating for individuals would autism should embrace and encourage these tools and methods, as they can be especially helpful when discussing issues pertaining to an individual's rights.

When Guardianship Is Rarely a Good Choice

Guardianship may not be a reasonable choice for adults on the autism spectrum who are of normal intelligence and clearly state they do not wish to have a guardian.

When an adult is able to understand their rights and express their preference to retain those rights, it would be very difficult for a judge to grant guardianship, as the individual in question is capable of understanding financial and medical issues and can make his or her own decisions. It would be unreasonable to strip someone of his or her rights as an adult in this situation.

Still, the issue is complex because autism is a significant developmental disorder—even for people at the highest end of the autism spectrum. People with autism lack many of the social communication tools that neurotypicals rely on to "sense" when they are being scammed or effectively manage their emotional responses.

Even the brightest and best-educated adult on the autism spectrum can be taken advantage of or victimized by predatory individuals. For example, falling prey to someone who poses as "friend" and makes monetary offers or requests that are conditional to the friendship.

People on the autism spectrum are also more likely than most neurotypicals to become overwhelmed by sensory challenges. In high-stress situations or settings, such as hospitals, sensory overload may render individuals unable to make decisions (such as about medical care).

Finally, many people on the autism spectrum have a tough time with "executive functioning"—the ability to make detailed plans in advance and follow through on them. Plans that require a longterm outlook or commitment, such as those related to education and finances, may be prohibited by a lack of executive functioning.

Together, these challenges make it such that every person on the autism spectrum ultimately benefits from support with managing complex legal, financial, and health decisions.

Why Doing Nothing Is Never a Good Choice

Whether you choose guardianship or a set of legal agreements that allow you to make decisions on your adult child's behalf when necessary, it's always a good idea to take some steps to protect your child. While this is particularly true if your adult child is autistic, it's also true if your child is neurotypical. After all, you never know when an unexpected need might come up.

A Word From Verywell

Planning for guardianship is just one consideration for parents thinking about the future and their autistic child's adulthood. As your child approaches the age of majority in your state, your family can start planning by:

• Creating a vision for his transition plan
• Building relationships with adult service agencies in your state
• Contacting Social Security to discuss your child's eligibility for SSI funding and health care
• Registering your son for Selective Service (required even for men with disabilities)
• Registering your child to vote (if appropriate)
• Setting up a Special Needs Trust and determining how it will be funded 
• Considering an ABLE bank account if your child will be working
• Looking into likely housing options for your adult child if he or she won't be living at home.