Autistic Patients’ Bill of Rights
By Dillon York
Disclaimer: The following document is not intended as a legal document. This document represents an ideal as the author sees it. Therefore, this document can be viewed as a statement of opinion, not to be used with legal authority, but to be reviewed for its ideas and shared for content and further discussion. This document is intended to open up a dialogue among medical professionals, family members, support providers, and autistic patients toward the overall improvement of medical services for autistic patients.
- Autistic patients have the right to receive quality health care services that meet the patient’s individual needs. Health care provided to autistic patients should be of the same quality as care given to non-autistic patients, with special consideration given to their unique needs and biological differences.
- Autistic patients have the right to contribute to their treatment planning and communicate about their health care needs. Communication can include, but is not limited to, the following: hand signals, body language, screaming, singing, drawing, typing, eye contact, spoken words, adaptive communication devices, and alternative communication methods. Doctors and health care workers do not have the right to deny services based on their opinions or approval of an autistic patient’s communication methods. Though doctors may acknowledge any deficiencies in communication that complicate or mitigate treatment efficacy due to a lack of feedback, decisions about communication methods rest solely with the autistic patient.
- Autistic patients should have access to their doctor during treatment, and should be allowed to interact and communicate with the doctor who is treating them.
- Autistic patients should be spoken to directly about their medical care. Diagnoses and treatment should be explained clearly and thoroughly to the autistic patient regardless of his or her perceived level of mental function.
- Autistic patients have the right to consent to or refuse any treatment. Refusals can be exhibited in many ways including, but not limited to: screaming, biting, scratching, running away, hitting, saying “no,” or pushing medical practitioners away. Medical practitioners should suspend treatment once a refusal has been established.
- Autistic patients have the right to be treated with respect, dignity, and sovereignty. Medical professionals shall recognize that no matter how impaired a person with autism is, he or she shall be treated with the same amount of respect as any patient deserves. Though some autistic people require constant personal care and assistance, they shall receive care that is centered around their needs and individual circumstances, not the conveniences or preferences of support providers.
- Autistic patients have the right to be treated by doctors of all medical disciplines. Autistic patients should not be excluded from specialized or natural health services. Autistic patients often have multiple biological needs that require coordinated efforts between specialists, internists, therapists, and holistic medical professionals. Though it is appropriate and expected that doctors should give feedback and recommendations regarding treatment as a whole, doctors are expected to cooperate on an interdisciplinary level to provide care and treatment that addresses the complex needs of autistic patients.
- Autistic patients have the right to refuse participation in experimental research. Special care must be taken to protect the rights of non-verbal or verbally impaired autistic patients, as they may not be able to communicate their decisions or object in clear ways.
- Autistic patients have the right to confidential treatment. Sharing of treatment information should be confined to the patient and his or her guardian if the autistic patient is non-verbal or cannot independently follow doctor instructions. Sharing of medical information beyond the doctor’s office should be confined to people who provide the support necessary to administer medications or help the autistic patient follow through with doctor instruction.
- Autistic patients have the right to express grievances about treatment or about any doctor or medical staff involved in their care without fear of retaliation. Grievances should be acknowledged and responded to in a timely and respectful manner.
- Autistic patients have the right to choose and/or terminate a doctor for any reason. Autistic patients have the right to select their course of treatment, or terminate treatment at any time, for any reason.
- Autistic patients may not be denied treatment based solely on their autism. Medical conditions related to the autism diagnosis, such as anxiety, bowel disorders, and immune problems, should be treated seriously by medical professionals. Refusing to treat these conditions based solely on the fact that the patient has autism could be considered medical neglect. If a doctor feels he or she cannot provide adequate medical care for these conditions, he or she shall refer the autistic patient to the appropriate specialist.
- Autistic patients have the right to be free from risky, painful, or harmful experimental treatments. Autistic patients who are non-verbal, have limited verbal ability, or an inability to object to or refuse treatment shall be protected from participation in risky, painful, or harmful experimentation or treatment.