Health Care Rights for Autistic Patients

The Americans with Disabilities Act (ADA) law ensures that people with disabilities get the accommodations they need to do things such as go to school, find and keep a job, use transportation, access public spaces, and receive proper healthcare. All health care providers are legally obligated to follow this law. The more autistic people know about their rights under the ADA, the clearer they can be with health care providers about how to meet their needs.

Accommodations at a medical office or hospital

Patients and families have a right to ask their health care provider’s office, clinic, or hospital to make changes if they’re unable to receive equal access to health care. Massachusetts General Hospital’s ASPIRE program has a Healthcare Toolkit with detailed information about what the ADA requires for patients with autism and how to ask for accommodations.

Accommodations for people with autism might include:

• Maps of the clinic or hospital

• Options for telehealth appointments

• Communication tools such as picture boards, or a tablet or phone app that explains office or medical procedures

• Permission to bring a service animal into spaces where animals aren’t usually allowed

For more information, consult our article on what an autism-competent office looks like.

Do health care rights change in the transition to adulthood?

The right to good care isn’t age specific, but support services and insurance coverage often change at key age transitions. When an autistic person who receives services from the state and education system turns 22, many support services change (or go away entirely). In addition, the rights to some types of accommodations may change as well depending on how autism presents, co-existing health conditions, state of residence, and other factors.

Got Transition? has many key resources to guide autistic young adults and their families through transitions in medical care. Their Implementation Guides are especially useful in navigating the medical transition to new providers.

For self-advocates, Autistic Self Advocacy Network has a guide called the Roadmap to Transition: A Handbook for Autistic Youth Transitioning to Adulthood that offers advice on many transition-related topics, including health care. Specific chapters that might be helpful include:

• Chapter 3, Know Your Rights. Rights and services autistic people have under the law.

• Chapter 10, Health Care. Health care rights, how to work with a medical provider and more.

Communication tips

Patients, caregivers, and guardians have the right to ask questions and to get clear, useful answers. It can be especially challenging to do so on the spot or in stressful situations. Whenever possible, try to do the following things:

• Write down questions for your health care provider ahead of time or make a checklist of points to cover.

• Remember that asking for answers in writing is also acceptable.

• Some providers have a patient portal that allows patients to communicate with providers privately via email. This can be used to submit questions or concerns ahead of an appointment.

Also, be prepared to ask more than once if the answers are not clear or useful the first time. Knowing that accessible healthcare is well within your rights and covered under the law can make it easier to ask for what is needed.

If it’s the first time visiting a new doctor, fill out the AAHR Initial Visit Patient Profile and bring it to the appointment.