While an individual is considered capable of making decisions for themselves when they reach age 18 in the United States, the legal rights of autistic adults can be more complex.
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In this article, learn about current options to support autistic adults with decision-making. These include guardianship, supported decision-making, health proxies, and powers of attorney.
Why Is Legal Support Necessary?
Parents of autistic children sometimes assume they will always have the authority to make decisions on their child’s behalf, especially if their child cannot understand their rights. Parents may wonder if they even need to worry about legal protections 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. This rule is in place to support people in mental health crises and people experiencing abuse, which unfortunately is very common among disabled people.
There are also potential financial and legal ramifications once a child comes of legal age. For example, if the autistic person signs a contract (even if they don’t understand it), it is binding.
So, depending on the autistic person’s support needs, guardianship (either full or partial) and other options like power of attorney and supported decision-making can be extraordinarily helpful as an autistic person becomes an adult.
As a parent, having such an arrangement in place will ensure that you or another trusted agent can help your loved one:
Caregivers and parents may assume that an intellectually disabled loved one is not able to make decisions for themselves. That is often not true. A need for support doesn’t equal an inability to contribute, and being the main contributing voice on your personal, individual affairs is a basic human right. So options like supported decision-making have emerged as a more humane option to give autistic people assistance without taking away their legal rights as guardianship does.
Whether you opt for guardianship or another legal arrangement to help an autistic adult manage their life, you should be ready to take action before the child reaches the age of majority in their state of residence. This will ensure that, should an emergency arise, the autistic person has the support they need.
Guardianships, Supported Decision-Making, Power of Attorney, and Other Safeguards
Guardianship is not the only solution out there. People use legal documents such aspowers of attorneyand health proxies to protect their needs and rights. The person in question along with the help of their trusted, support team will need to decide what protection is right for them.
Guardianship
Guardianship, in this scenario, is a legally authorized relationship between the parent or legally appointed person (“guardian”) and the autistic person (“ward”). A legal guardian has all the rights and responsibilities of a parent, while the ward has no such rights or responsibilities.
Guardianship is an extreme measure. There are specific requirements that must be met, and a judge must agree to the arrangement in a court of law. When you become an autistic adult’s guardian, you take on legal responsibility for their daily and financial needs.
Depending on the state, an adult may lose most, if not all, of the rights of adults in the United States.For example, they may lose the right to:
In certain situations, guardianships can be reversed. A judge may decide to terminate the agreement if they feel it is in the best interest of the ward to do so. This process is very difficult, expensive, and extensive, so many people don’t have access to it.
Supported Decision-Making
Supported decision-making (SDM) is an alternative to guardianship that allows the autistic person to maintain the right to have control over their own life, while ensuring they have the support they want to make important decisions. SDM looks different for each person as it is tailored to their needs and strengths.
In supported decision-making, the autistic person has “supporters.” Supporters can range from one person to a group made up of family, friends, loved ones, and experts/professionals. An autistic person selects who their supporters are, and can change and remove supporters. Adding and removing supporters can be done without a court process, making it more accessible. Having more than one supporter is advised to prevent manipulation and abuse.
Supporters agree to help the disabled person think over and understand situations so that the disabled person is able to make informed decisions. Supporters also agree to respect the autistic person’s decisions. With SDM, the autistic person is also able to make decisions without supporter input. Anindependent review of an SDM projectfound that it increases pride, self-confidence, and happiness.
Here are some examples of supported decision-making:
For a more thorough example, the Autistic Self Advocacy Network provides this easy-read scenario between an autistic person and her supporter:
While many families and communities already practice supported decision-making, having a formal SDM agreement can prevent institutions (courts, hospitals, etc) from requiring guardianship and disregarding the autistic person’s ability to make decisions.
Currently, only a few states have SDM agreement forms, but older, existing forms of SDM that come with their own pros and cons include healthcare advance directives, power of attorney, durable power of attorney, and authorized signatory forms.
Power of Attorney
Health proxies and powers of attorney are also often used as a substitute for guardianship. These arrangements offer a compromise, as they avoid stripping the individual of their rights as an adult.
Along with a Special Needs (Supplemental) Trust to protect the autistic person’s money and a Representative Payee to accept and manage Social Security payments, these documents may be enough to ensure an autistic adult’s well-being.
Other Safeguards for Autistic Adults
In addition to guardianship, proxies, and powers of attorney, there are other options for ensuring an autistic adult’s legal and personal safety. Some are as harmful as guardianship while some are not. They include:
How to Decide What’s Best
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 has high support needs or if a child has low support needs.
But most autistic people fall somewhere in the middle. For example, they may do well in predictable situations but have more needs in unexpected situations or emergencies.
Guardianship might be the right choice when the autistic person:
However, guardianship might be too restrictive for some autistic people. 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.4 Guardianship might be overly restricted if the autistic person:
Planning for Adulthood
Why Doing Nothing Is a Bad Choice
It’s always a good idea to take some steps with your loved one to ensure they will be protected and supported. While this is particularly true if your adult child is autistic and therefore more vulnerable to abuse and harm, it’s also true if they are neurotypical. After all, you never know when an unexpected need might come up.
Summary
Planning for an autistic person’s transition to adulthood is a key part of setting them up for success in life. Autistic people should have the protections in place to ensure they receive an appropriate level of support. Autistic people have a variety of support needs, traits, and strengths so these decisions will look different for each person.
3 SourcesVerywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.Zietlow K, Dubin L, Battles A, Vitale C.Guardianship: A medicolegal review for clinicians.J Am Geriatr Soc. 2022;70(11):3070-3079. doi:10.1111/jgs.17797Uekert B, Van Duizend R.Special Programs: Adult Guardianships. National Center for State Courts (NCSC).American Bar Association.A Primer On Supplemental Needs Trusts.Additional ReadingAutism Society.Guardianship And Alternatives.Parsi K, Elster N.A Life of One’s Own: Challenges in the Transition from Childhood to Adulthood with Autism Spectrum Disorder.AMA Journal of Ethics.2015;17(4):342-347. doi:10.1001/journalofethics.2015.17.4.pfor1-1504Platt R.Protecting Your High-Functioning Child without the Need for Guardianship. Autism Parenting Magazine. 2016;41(41).
3 Sources
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.Zietlow K, Dubin L, Battles A, Vitale C.Guardianship: A medicolegal review for clinicians.J Am Geriatr Soc. 2022;70(11):3070-3079. doi:10.1111/jgs.17797Uekert B, Van Duizend R.Special Programs: Adult Guardianships. National Center for State Courts (NCSC).American Bar Association.A Primer On Supplemental Needs Trusts.Additional ReadingAutism Society.Guardianship And Alternatives.Parsi K, Elster N.A Life of One’s Own: Challenges in the Transition from Childhood to Adulthood with Autism Spectrum Disorder.AMA Journal of Ethics.2015;17(4):342-347. doi:10.1001/journalofethics.2015.17.4.pfor1-1504Platt R.Protecting Your High-Functioning Child without the Need for Guardianship. Autism Parenting Magazine. 2016;41(41).
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.
Zietlow K, Dubin L, Battles A, Vitale C.Guardianship: A medicolegal review for clinicians.J Am Geriatr Soc. 2022;70(11):3070-3079. doi:10.1111/jgs.17797Uekert B, Van Duizend R.Special Programs: Adult Guardianships. National Center for State Courts (NCSC).American Bar Association.A Primer On Supplemental Needs Trusts.
Zietlow K, Dubin L, Battles A, Vitale C.Guardianship: A medicolegal review for clinicians.J Am Geriatr Soc. 2022;70(11):3070-3079. doi:10.1111/jgs.17797
Uekert B, Van Duizend R.Special Programs: Adult Guardianships. National Center for State Courts (NCSC).
American Bar Association.A Primer On Supplemental Needs Trusts.
Autism Society.Guardianship And Alternatives.Parsi K, Elster N.A Life of One’s Own: Challenges in the Transition from Childhood to Adulthood with Autism Spectrum Disorder.AMA Journal of Ethics.2015;17(4):342-347. doi:10.1001/journalofethics.2015.17.4.pfor1-1504Platt R.Protecting Your High-Functioning Child without the Need for Guardianship. Autism Parenting Magazine. 2016;41(41).
Autism Society.Guardianship And Alternatives.
Parsi K, Elster N.A Life of One’s Own: Challenges in the Transition from Childhood to Adulthood with Autism Spectrum Disorder.AMA Journal of Ethics.2015;17(4):342-347. doi:10.1001/journalofethics.2015.17.4.pfor1-1504
Platt R.Protecting Your High-Functioning Child without the Need for Guardianship. Autism Parenting Magazine. 2016;41(41).
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