Why children with autism need organized medical records

Managing a child’s complicated and complex disorder requires keeping up with health information like records, histories, treatments and providers. Children with autism spectrum disorder (ASD) often receive clinical care from multiple providers at different facilities. Finding a way to organize and streamline your child’s health information is a powerful tool to ensure he receives the most thorough care.

Unexpected events, like a doctor leaving a practice, a family move or a change in insurance coverage, can be especially difficult for families with children who need specialized care. Keeping medical information up to date and easily accessible helps you coordinate the best care without gaps for your child.

Organize your child’s medical records

Organizing your child’s medical information will help you:

• Prepare for appointments.
• Give new providers all necessary information about your child so they can get to know your child well.
• Be an advocate for your child. Some services require that you document your child’s needs. This will help you with documentation that will show what services your child should receive.
• Prevent gaps in your child’s care. Sometimes children with autism will see many different providers before being diagnosed or getting treatment. This helps you coordinate care across different clinicians, like doctors, occupational therapists, speech therapists and counselors.

Information to include

This will vary somewhat depending on your child, but it’s a great start to have:

• A detailed medical history
• A medicine list (including current and past prescription medicines, over-the-counter medicines, supplements and vitamins your child takes)
• Medical test results
• Developmental or educational testing results
• Specialist contact information
• Specialist paperwork
• Consent forms
• Upcoming appointment schedule
• Insurance and billing information
• An ongoing list of questions you’d like to ask your child’s providers 
• A place to keep your notes

What’s the best way to organize my child’s medical history?

There’s no right way to organize this information. Choose a method that’s comfortable for you and that you’re likely to stick with. Some techniques we’ve seen parents use successfully include:

• A binder with tab dividers
• An accordion file folder
• An electronic system
• A spreadsheet
• An organizational app

Once you’ve established a system, create a dedicated time in your schedule to keeping it up to date. Regularly set aside a few minutes to file new paperwork or jot down questions you’d like to ask at your next appointment. Keeping your child’s information up to date is the only way to make the system useful and your family prepared for an unexpected event.

Get started on building a care notebook by visiting the American Academy of Pediatrics.

We recognize that every child is unique and that the content of this article may not work for everyone. This content is general information and is not specific medical advice. We hope these tips will serve as a jumping-off point for finding the best approach to helping a child with autism. Always consult with a doctor or healthcare provider if you have any questions or concerns about the health of a child. In case of an urgent concern or emergency, call 911 or go to the nearest emergency department right away. Some physicians and affiliated healthcare professionals on the Children’s Healthcare of Atlanta team are independent providers and are not our employees.