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You are here: Home / Resources / Topic / Health / How can I improve the experience of healthcare visits?

How can I improve the experience of healthcare visits?

It can be a challenge for an individual on the spectrum to overcome communication barriers with their doctor in order to establish necessary trust. Although pediatricians often acquire experience caring for autistic children, primary care physicians often have less experience. Most doctors report that they did not receive adequate training in working with autistic patients in the course of their formal education.

Doctors who have experience working with neurodiverse patients can play a tremendous role in improving the quality of daily life for families living with autism. Furthermore, as autism advocates, we can help healthcare professionals overcome the learning curve and work together to ensure the best health outcomes for adults on the spectrum.

Be sure to check out this presentation by MHAF advisor Dr. Faith Frankel to learn how parents, doctors, and self-advocates can work together to ensure successful medical visits.

Below, you will find additional information that we have collected from health experts throughout the country who specialize in autism.


TOOLKITS

AASPIRE Medical Toolkit (Easy to navigate toolkit regarding for both adults with ASD and health care providers. Tips, forms, and information regarding appointments, finding health care providers, insurance policies, etc.)

Autism Speaks Medical Toolkit  (Strategies to help the transition of an autistic adult from pediatrician to a primary care physician.)

Foundation For People With Learning Disabilities – Giving Blood (Step-by-step explanation on what happens when one has blood work done)

Guide for Doctors on How to Work with an Autistic Patient (By The National Autistic Society of the UK)

LITERATURE

 ‘Gently Does It,’ Caring for Adults with Autism (American College of Physicians)

Leaving The Pediatrician: Charting The Medical Transition of Youth with Autism (By Marina Sarris)

Behavioral Analysis – Adult Resources (VISTA Center for Behavioral Analysis)

Summary of Dietary, Nutritional and Medical Treatments (Autism Research Institute)

Hospitals Adapting for Adults With Autism (Op-Ed by Dr. Christopher Hanks with Live Science)

Adults with Autism May Have High Burden of Health Problems (By Jessica Wright for Simons Foundation Autism Research Initiative)

A Study of Family Caregiving (Marsha Mailick Seltzer, Ph.D. and Marty Wyngaarden Krauss, Ph.D.)

Autism Transition Resources: Moving from Pediatric to Adult Healthcare (MassGeneral Hospital for Children)

“Autistic Adults Receive Medical Care At Center Designed For Them” (NPR)

Transition Care for Special Children (Robin Wulffson, M.D.)

Making Homes That Work: A Resource Guide for Parents Living with Autistic Spectrum Disorder and Co-ocurring Behaviors (By George Braddock and John Rowell)

Successfully Receive Social Security Disability Benefits with Autism (Autism Spectrum Disorder Foundation)

Treating Patients with Autism in a Dental Setting (Josalyn Dewell, RDH)

WEBSITES

 Adult Autism and Developmental Disorders Center

Medicaid State Plan Amendments

Practical Oral Care for People with Autism

The Affordable Care Act and Autism and Related Conditions -U.S. Department of Health and Human Services

Healthcare.gov: Disabilities

Disabilities and Healthy Living – CDC

Medicaid and CHIP Program (MACPro) Portal

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