Guardianship and Other Options for Adults With Autism

Health Proxies for Adults With Autism

Options for Adults With Autism
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In the United States, individuals reach the age of majority at 18. No, they aren't allowed to drink alcohol—but they do have the right to, for example, quit school, take out a credit card in their own name, make medical decisions for themselves, vote, and get married. Few 18-year-olds on the autism spectrum are ready to make such major decisions for themselves, and many will never have the skills to manage complex personal and legal transactions.

As the parent of an autistic individual, how will you address your adult child's needs? You have several options, with full guardianship being the most drastic. Your decision will depend on many factors, but should ultimately be made based not on fear but on realistic expectations and real-world concerns.

Why Worry About Guardianship?

Many parents of children with disabilities assume that they will always have the authority to make decisions on their child's behalf. This is especially the case if the disabled child lacks the intellectual ability to understand their own challenges and rights. Why worry about guardianship, they may wonder, if their child will never make their own decisions anyway?

The answer to this question is simple: once your child is 18, he or she is a legal adult. That means, for example, that you no longer have the right to be in the room during a medical examination unless your child grants you that permission. You no longer have the right to insist that your child stays in school if she doesn't want to. If your child signs a contract, even if he doesn't understand it, the contract is binding.

Guardianship (or other legal agreements between you and your adult child) can be extraordinarily helpful as your child interacts with the real world. For example:

  • You will have the ability to help your child make smart legal and financial decisions
  • You will have the ability to be present and involved with medical decisions
  • You will have the authority to sign contracts, government documents, or agreements on your child's behalf

Whether you opt for guardianship or some other legal arrangement to help your adult child manage her life, you should be ready to take action on your child's 18th birthday. Waiting a few weeks or months may have no repercussions, but if an emergency should arise you'll have no ability to step in and help.

Guardianships, Proxies, and Powers of Attorney

Guardianship is just one way to protect your ability to help your child negotiate the adult world. In fact, many people with or without disabilities make use of other types of legal documents such as powers of attorney and health proxies to protect their own needs and rights. You'll need to decide what level of protection is right for your child and your situation.


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. It is only possible to gain guardianship of an adult through a legal process that involves a court hearing.

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

  • Guardian of the Person: The individual who manages a disabled adult's personal needs ranging from day to day financial and medical needs to food, clothing, and shelter.  
  • Guardian of the Estate or Guardian of the Property: The individual who is exclusively responsible for handling the disabled adult's financial concerns such as managing an estate, property, or will.  

Guardianship (particularly guardianship of the person) is an extreme measure—it's an arrangement agreed to by a judge in a court of law, and there are specific requirements attached to it. If you are your child's guardian, you take on legal responsibility for his or her daily and financial needs. Meanwhile, depending on the state you live in, your adult child may lose some or most of the rights accorded to adults in the United States. For example, your child may lose the right to:

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

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."

For example, what if you happen to be on a cruise when an important document needs to be signed? What if you're in a car accident and can't make a smart decision about your health? In such cases, health proxies and powers of attorney grant someone else the right to sign on your behalf and make quick decisions when you can't.

Health proxies and powers of attorney are often used as a substitute for guardianship when an adult with autism can make some decisions and handle some situations but may need help with others. They offer a compromise between stripping the individual of his or her rights as an adult and leaving them open to legal or health challenges or abuses.

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

Other Legal Approaches to Safeguarding an Adult With Autism

In addition to guardianship, proxies, and powers of attorney there are quite a few additional options for ensuring your adult child's legal and personal safety. Here are just a few:

  • You can appoint a permanent or temporary Guardian or Conservator who is responsible for handling specific decisions either permanently or for a short period of time.
  • You can create a joint bank account in your child's name and your own name.
  • Your adult child can create an Appointment of Advocate and Authorization, which allows him or her to designate a person to advocate on for him with agencies such as the Department of Developmental Services (DDS), the Department of Human Services (DHS), Medicaid, and local authorities.

When Is Guardianship the Right Choice?

Autism is complicated, and so are most decisions parents make on behalf of their autistic child. Perhaps the easiest decisions about guardianship are made when the adult child is either very severely disabled or very mildly autistic. In those cases, the answer is usually fairly straightforward. But most people with autism fall somewhere in the middle. For example, they may do very well in predictable situations but fall apart in emergencies. Or they may be very bright but have difficulty determining whether someone asking them to sign a paper has their best interests in mind.

When Guardianship Is Usually a Good Choice

For some people with autism, guardianship is the ideal option. Typically, guardianship is appropriate for an individual with severe intellectual disabilities who is unable to understand or meet his own daily needs. Such a person would never have the capacity to make health or financial decisions, vote, or sign a document with full understanding. As the parent of an adult with severe autism, you already expect to take full responsibility, and guardianship will make that easier.

Judges who make decisions about guardianship are likely to find it easy to grant guardianship to the parents of an adult who is unable to speak, or who clearly can't understand spoken language. And individuals with very severe autism are unlikely to feel injured because their abstract rights as an adult have been stripped away. 

It is always possible, however, that your child with severe autism has a much greater understanding and ability than is visually obvious. Some such individuals can communicate effectively using technology, and they should be encouraged to do so. If it is possible to have a conversation about guardianship with your child, their opinion, and their rights should certainly be the first consideration.

When Guardianship Is Rarely a Good Choice

For other people on the spectrum, guardianship is an unreasonable choice. That's particularly the case when the autistic child is of normal intelligence and does not want to have a guardian. In such a case it would 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. In addition, it would be unreasonable to strip such a person of his or her rights as an adult.

Unfortunately, autism really is a significant developmental disorder—even for people at the highest end of the autism spectrum. People with autism lack some of the social communication tools neurotypicals rely on to "sense" a scam or to manage emotional responses. As a result, even the brightest and best-educated adult on the spectrum can fall prey to people who pose as "friends," make offers too good to be true or request money as a condition for friendship.

In addition, people on the spectrum are more likely than most neurotypicals to become overwhelmed by sensory challenges, making some healthcare decisions more difficult. Finally, many otherwise-capable 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. All of these challenges mean that every person on the spectrum really does need some level of help and support when it comes to 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 aspect of planning for an autistic child's adulthood. As your child nears his or her 18th birthday, you'll want to start thinking about such important steps as:

  • 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 healthcare
  • 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.
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