There are many medical conditions that are more common in people with autism. Children and adults on the spectrum may require more visits and more tests, which can prove challenging.
Autism Treatment Network Research on Healthcare Services
Researchers with the Autism Speaks Autism Treatment Network study healthcare services and how to get better care to people with autism and their families.
Families can face many roadblocks when they need medical care for their loved ones with autism. When a child is young, spotting the early signs of autism and getting a diagnosis is important. It helps the child get early-intervention therapy quickly. But many pediatricians feel they need more training on how to screen and treat their patients with autism. Many families have to wait a long time for an appointment with a doctor who can diagnose autism. Children whose parents have less education, or who have mild autism symptoms and higher IQ scores, are often diagnosed at older ages. Also, white and non-white children with autism don’t get the same amount of care from specialist doctors. These are doctors who focus on just one area of the body like the stomach or the brain. This could be because some families had a hard time getting medical care. Or, they were not referred to specialist doctors, or the family did not follow-up with the specialist doctors. Telemedicine is one way to help. Telemedicine means meeting with a health care provider over the internet. Telemedicine lets families meet with health care providers who might be too far away to visit in person. It also lets health care providers share information with each other including expert information about caring for children with autism.
Going to the emergency room can be very hard for people with autism and their families. Families can have a hard time explaining about autism and what their child needs. They may have to wait a long time for care. Or they might feel rushed by staff who are not used to caring for patients with autism. Families also may feel that the emergency room staff does not see them as experts on their child with autism. Some families find it stressful to tell the emergency room staff that their child has an autism diagnosis. This can be because they are afraid of being judged.
Health care providers agree that explaining that the patient has autism is an important part of being able to give the patient the best care. One tool that can help families in hospital or emergency room situations is an Autism Specific Care Plan. Families can create their own Autism Specific Care Plan. They can bring it with them to share with hospital staff. An Autism Specific Care Plan helps families give hospital staff important information. It tells them how to communicate and interact with the child and keep them safe. Families who use Autism Specific Care Plans feel happier with their care and feel that health care providers are better at working with their child or teen with autism.
Hospitals and emergency rooms can also think about making changes to help patients with autism. Small changes can all help lower anxiety for kids and adults with autism. Some of these changes include keeping wait times short, creating a calm space, and playing a movie in the waiting area. Making sure parents are part of all medical care and treated as experts on their child can help both families and staff. Finally, hospital staff can try communicating in the way the patient prefers (talking vs. typing, etc.).
For the full reference list and more Frequently Asked Questions addressed by ATN research on health services, visit asatn.org.
*Disclaimer: This summary is based on research conducted by Autism Treatment Network (ATN) members. It is not a summary of the entire body of research literature available on this subject
Preparation is critical for medical visits and tests. Autism Speaks resources can help you prepare for:
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