Jun 25, 2014 2 Share

Guardianship for ASD Adults

Silhouette of adult holding child's hand in front of sunset.

First published September 6, 2011.

As a parent, you are a legal guardian. You’re responsible for your child’s welfare, education and health. As the parent of a child with autism, of course, you’re also responsible for therapies, IEP’s and much more. With all those responsibilities come rights. You have the right to choose your child’s medical care, educational setting and therapies. You decide how much to spend on what, where your child will live, what he will eat. As soon as your child turns 18 years old, however--all things being equal--all that will change. In the United States, anyone who is 18 or over is considered an adult, with all the rights and responsibilities attached to adulthood.

Rights and Responsibilities

What are the implications of becoming an adult? Here are just a few:

  • Adults make their own decisions about money. If your 18-year-old with autism willingly hands over her cash to someone who asks for it, there’s nothing you can do to get that money back.
  • Adults make their own decisions about healthcare. If your 18-year-old with autism says he does not want medical treatment for a serious medical issue, the hospital must abide by his choice. 
  • Adults make their own decisions about residence. An adult can simply walk out of school or work, giving no information about his destination.

Many adults on the autism spectrum face challenges with taking on the responsibilities of adult life. They may not be able to adequately understand money, sex, or healthcare issues or they may not have the emotional ability to handle such issues under stress. Because autism is such a wide-ranging disorder, it may also be the case that your adult child can, for example, handle money on a day-by-day basis, but be unable to grasp the concept of taxes, investments or insurance plans. Or it may be that your adult child can manage her own routine doctor visits, but panics when faced with the bright lights and unusual smells and sounds of a hospital. There are a number of situations in which adults are either developmentally unable to act accordingly, or when certain specific types of tasks are beyond their abilities.  

Full Legal Guardianship

To help parents and/or caregivers to manage such situations, the federal government and individual states offer a variety of caretaker options which can be tailored to individual abilities and needs. By far the most intensive option for managing the affairs of an adult with special needs is continued full, Legal Guardianship. At first glance, it may seem like a good idea to simply continue as your child’s legal guardian, even after he turns 18. After all, you’ve done a good job so far, so why change a situation that works? In some cases, particularly when there is a severe disability, this option may be a particularly good one. But what if your child's autism is less profound? Depending on your state, full Legal Guardianship may strip your child of many legal rights, including the right to marry without consent, vote, or even choose his or her own home. If you believe your child with autism can and should have at least some of the rights and responsibilities of an adult, then this type of arrangement may not be appropriate.

Another important point to consider is that Legal Guardianship does not give you the legal right to determine your child’s choice of friends or sexual partners. If you are considering guardianship because you feel your child makes poor decisions in this regard, you may want to carefully consider your plans. Even if you are granted some form of guardianship (and you may not be if your child is not intellectually disabled), guardianship doesn’t give you any more authority than you have today. In addition, should you feel that your child's level of disability makes full Legal Guardianship a good choice, you must decide if you will continue in that capacity. If you determine that you wish to continue as your adult child’s guardian, then you can take action prior to your child’s 18th birthday to ensure that there is no gap in guardianship. This may be an important step, since an emergency situation could arise in which your adult child would need to sign a medical waiver or give permission for a medical intervention. Without legal guardianship, the process could slow down, making it very difficult to provide quick, appropriate medical care.

Other Guardianship Options

There are essentially three forms of guardianship: Guardianship of the Person, Guardianship of the Estate/Property, or Guardian of both the Person and the Estate. Of these, full Legal Guardianship covering both property and person is the most intensive. It’s important to note that there can also be two guardians assigned--one as guardian of the person, and the other as guardian of the estate.

Guardians of the Person are responsible for:

  • Setting up and monitoring residence;
  • Setting up and monitoring medical treatment, therapies and education;
  • Managing end-of-life and healthcare decisions.

Guardians of the Estate are essentially responsible for all financial transactions and decisions, including: 

  • Managing, buying and selling assets;
  • Paying bills and taxes;
  • Making any financial arrangements for the long term.

Regardless of the type of guardianship you seek, you or your child’s assigned guardian may be responsible for reporting to the court each year. Guardianship is not a permanent status, and it is possible to either give up or lose the right to be a guardian of an adult.

Choosing the Guardian

You will also want to decide whether you, personally, want to be your adult child’s guardian. It is possible to assign a third party or hire a professional guardian to manage your child’s daily life and financial affairs. Even if you decide to become your child’s guardian, the question will arise of who will take over for you upon your death. Ideally, that person will have agreed to the role ahead of time, and you’ll have put that decision into your will. You may wish to consider hiring a lawyer or a guardianship professional to help you through this process.

Establishing Legal Guardianship

Just as each state has its own regulations regarding guardianship, each one has its own procedures for pursuing this arrangement. The process will involve steps that you will take and others taken by the legal system:

  • Check on your state’s laws for guardianship, since all differ slightly. Be sure you have all the information you need, including forms.
  • Have your child undergo an evaluation by a qualified doctor or team. Be sure that team fills out all the appropriate paperwork.
  • Submit your paperwork to the correct authority in your state.
  • In most states, your child will be officially served with papers stating that you are seeking guardianship. In essence, you are suing your child, so it is the court’s responsibility to be sure your child receives notice of your suit, and is represented. You may need to help your child understand the experience of being served with legal documents.
  • The state will typically appoint a representative for your adult child to investigate your claim that he or she is incompetent to act on his own behalf. Depending upon your state and your circumstances, that individual might visit your home; he or she will likely want to meet your child and review your evaluation.
  • Attend a hearing with your child, so that a judge can review your case and assign you guardianship.

Alternatives to Guardianship

A great many adults with autism are perfectly capable of handling many aspects of their lives, and many are also capable of seeing clearly where they need extra help. If your adult child fits this description, there are many options available to you and your child to provide support without obtianing guardianship:

  • Appoint a Conservator who is responsible for handling financial resources.
  • Obtain Limited Guardianship, which restricts decision making to certain areas, such as medical treatment.
  • Appoint a Temporary Guardian or Conservator in an emergency situation when certain decisions must be made immediately and your adult child is unable for some short-term reason to make those decisions independently.
  • Create a joint bank account or name a Representative Payee. These are both options for helping your adult child to manage his money and financial obligations. Joint bank accounts can require two signatures to access money; Representative Payees manage payments when money is available through Social Security.
  • Obtain Durable Power of Attorney, which is granted by your child with autism to provide you with the legal authority to make legal and financial decisions on their behalf. 
  • Create Advanced Directives and Healthcare Proxies which enable your adult child to designate a health care agent to make decisions on their behalf.
  • Create an Appointment of Advocate and Authorization, which allows your adult child 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.

Making the Decision

How critical is it to establish guardianship for your adult child with autism? The answer to that question will vary for every reader.  While you may not feel that full guardianship is right for your child, you may find that other options are in your family's best interest. The important thing is to access information, begin to discuss and consider choices, and to move toward accurate assessments of your child's strengths and challenges regarding living independently. Before your child blows out those 18 candles, it is wise to have considered readiness for everything that comes with stepping into adulthood.

Comment Options

Gene Bensinger (not verified)

One size does not fit all (as usual)

Thank you, Lisa.  Great piece. I'll make sure to pass this along.  Guardianship is an issue that a lot of folks put on the "back burner", then "forget" to address prior to age 18.  That can be a big mistake.  For some individuals and families, the optimal structure is clear, for others, it can be terribly complex and the process can be time consuming. You REALLY don't want to start by playing "catch up".  Court dockets, forms, reports, signatures, more forms, hearings, conference calls, etc.Not only do adults with a disabliity (like typical ones) control their health care decisions, they control access to critical information. So parents may suddenly and surprisingly, find themselves in the positon of being completely "in the dark" about, and with no access to, financial, health and other individual information that's understandably and appropriately protected by law.The advice I give folks is to start thinking seriously about this issue when your child is in the  mid teen years.  That's plenty early.As you say, there is no single structure that's appropriate for everyone, if oversight by a court appointed guardian is needed.  Some activists vehemently oppose the concept of guardianship.  Others believe folks should automatically pursue full guardianship.  Neither of those seems reasonable to me. Choose what works best for all, and if you need help with the process, there are plenty of legal professionals, fee based and some free, and family counselors who specialize in guardianship.  They can help a lot...but only if you reach out!One area I do think needs a LOT of work is in the area of educating legal professionals (including judges) and strengthing the structures tasked with the education and oversight of guardians. 


Great advice

Great advice I wish I had read before my Autistic son turned 18, it has been such a hassle. I can't even make a doctors appointment for him anymore or talk to his lawyer or counselor, which I have been doing his entire life! I had to take him to the Social Security Office for him to tell them that I could receive his SS benefits on his behalf because he had to sign for approval after 18. I came across this page looking into getting a Power of Attorney so I can do all the things I always do for him, and will likely always have to do for him, just wish someone had told me sooner!