Respect in Health Care for Autistic Adults

Helping adults to navigate the health care system as well as communicate and advocate for high-quality care in collaboration with their clinical providers.

Header image adapted from original artwork by Billy Megargel titled: Cross Sections (for more information see About Us)

Easy access to essential health information

We've developed a toolkit that connects to important health resources relevant to all stages of adulthood

Make important health decisions easier

Our Autism Health Care Toolkit supports caregivers and advocates in exploring vetted and actionable information around important health needs for autistic adults.

Training for providers

Advocates and caregivers can share with existing providers Harvard Medical School’s latest clinician course that’s geared toward educating health providers on supporting autistic adults.

Support for all transitions

Help for autistic adults and caregivers across the lifespan

Explore and engage with health resources that support adults transitioning through ages and stages of life.

Young Adults

The transition years from school to adult programs set the stage for the a full life, and health care choices are a key part of that.

Midlife Adults

People get older and bodies and living situations change. Health care needs change, too, and new plans need to be made to assure everyone gets the care they deserve.

Older Adults

Planning for later life health issues and transitions in care is a challenge families and care teams can face together.

Manageable moments

Understanding and improving the adult health care experience

Finding the people and places that meet each person’s needs

What’s an Autism-Competent Office?
Environments with tight spaces, and lots of noise and/or people are challenging for all patients, but especially those with the sensory issues that come with being autistic. Environments with tight spaces, and lots of noise and/or people are challenging for all patients, but especially those with the sensory issues that come with being autistic. Some of the physical characteristics of an autism-competent clinical office or hospital include: Fewer bright lights A neat, orderly appearance, without too many magazines, video screens, or decorations Quiet music and overhead sounds or none at all Fewer smells from cleaning products or disinfectants Calm neutral colors, keeping any areas of bright color to a minimum Easy access to electrical outlets for keeping devices charged Socially distanced seating A quiet room or space separate from the waiting area An autism-competent office or hospital offers more than one way to communicate between patients and staff. These may include: Email Online scheduling and access to medical records (also known as patient portals) Texting Phone calls and voicemail A tablet or communication board for use during an appointment Our Clinician Course, Clinical Care for Autistic Adults, gives healthcare providers advice on how to create autism-competent spaces and train clinical staff to better serve the needs of autistic patients. The downloadable tip sheet can help patients to advocate for autism-competent care while directing clinicians on how to best provide that care. An innovative example of autism-competent, neurodiverse healthcare can be found at All Brains Belong, a medical practice that takes a “whole life” approach. Animation: What’s an autism-competent medical office look like?
Family Support and Wraparound Services
Many providers have people on staff who can help families understand and navigate a variety of health and community services. Some medical practices and hospitals have family support clinicians or clinical social workers that can help patients with sensory needs or communication impairments identify support services within the community. Family support clinicians make referrals, collaborate, problem-solve, and connect to supports to help autistic adults and caregivers successfully navigate services across the lifespan. These “wraparound services” address important needs across the lifespan like medical/health concerns, special education, social/behavioral supports, public benefits, legal/financial advice, housing, vocational training, transportation, etc. Not every medical practice serving adults has a support clinician, but caregivers and self-advocates can encourage the practice to create such a resource. Support clinicians not only improve the lives of autistic adults and their caregivers, but they also ease the workload of the entire practice by ensuring whole-life health for all patients and their caregivers. Julie M. O’Brien, MEd, LMHC, a Family Support Clinician at the MGH Lurie Center for Autism, helps to educate and support families by identifying a range of home- and community-based supports and resources by age and stage of life. She serves as the liaison between the patients’ provider and parents/guardians/families, and points them in the right direction. Useful links to find out more about sites and organizations that can help with wraparound services. Housing​ Autism Speaks Resource Guide Autism Housing Network Autism Housing Pathways Education​ Postsecondary Education Toolkit Independent Living and Life Planning LifeCourse Tools AANE LifeNet independent Living Support Program Autistic Self Advocacy Network Employment​ NEXT for Autism Service Providers Council of Autism Service Providers Autism Speaks Directory of Service Providers Legal & Financial Issues​ Autism Advocacy Law Center Guide for a Letter of Intent Financial Planning Toolkit Social Connections & Supports AANE Online Support and Discussions Support for Families of Those with Profound Autism Profound Autism Alliance
Patient Navigators
A patient navigator helps patients and clinicians create and access autism-competent care. They focus on improving processes for both inpatient and outpatient care in a medical facility and identify opportunities... A patient navigator helps patients and clinicians create and access autism-competent care. They focus on improving processes for both inpatient and outpatient care in a medical facility and identify opportunities to improve outreach so patients and staff are aware of the tools and resources that can improve care and outcomes. Some patient navigators specialize in assisting cancer patients but in the context of autism they work with providers to enhance their understanding of an autistic person’s unique communication, sensory, and behavioral needs. Patient navigators also coordinate care and seek out opportunities to improve outreach in ways that heighten awareness of the specific needs that make healthcare more accessible and comfortable for autistic people. While the work of a patient navigator is largely within the healthcare setting, they can also work with autistic adults to develop tools outside of the office environment to help with recovery from medical procedures and to assure continued good health. Such supports could include physical exercise or accommodations at home to help with mobility, guides for personal care, or communication tools for working with physical therapists. Meet Karen Turner Karen Turner is a patient navigator at the Massachusetts General Hospital in Boston, MA, and has developed tools and strategies for autistic people that have vastly improved the health outcomes for people with some of the most challenging forms of autism. She emphasizes the importance of creativity and flexibility in building in accommodations for autistic people and notes that she has ‘never seen an unreasonable accommodation’ for someone with autism. Check the local hospital or clinic website to see if they list a patient navigator. While not every medical facility hospital has one it’s always wise to ask hospitals who on their staff is designated to help people with sensory needs, intellectual disabilities or communication challenges get the care they deserve. Many hospitals have clinical social workers who can be helpful in some of the same ways. Asking for accommodations is a form of advocacy and reinforces the need for these types of support staff positions to improve high quality care for autistic patients. In this video, Karen gives advice about choosing a medical specialist. Karen Turner, Patient Navigator at Massachusetts General Hospital, on choosing a medical specialist
Successful Telehealth Appointments
Telehealth can help those who don’t live near an autism specialist or other care provider, or if it is difficult to go to appointments in person. Some healthcare appointments don’t require an office visit and instead can take place via telehealth. Telehealth visits usually occur using a secure videoconference platform on a personal computer, tablet, or other mobile device. Telehealth can be useful for some types of evaluations, such as a wellness check-in or certain parts of neuropsychological exams. Each provider will have specific guidelines about when a telehealth visit may be substituted for an in-person visit, so be sure to ask. Does insurance pay for telehealth? The rules about telehealth coverage have changed since the end of the pandemic emergency. Check with insurance providers to see which telehealth visits are covered. It is also a good idea to see if the provider plans to offer and bill for these visits over the long term. Benefits of telehealth A successful telehealth appointment depends on whether the patient and provider are both comfortable with the technology and don’t mind communicating remotely if a private, quiet space is accessible. Telehealth can help those who don’t live near an autism specialist or other care provider, or if it is difficult to go to appointments in person. Some benefits to patients include: a home or familiar environment is less stressful compared with a clinical setting fewer transitions involved like travel, wait times, and noisy spaces avoiding the logistics, time, and cost of travel it can be easier to include many members of the care team (clinicians, family members, and group home/provider staff). Downsides of telehealth Telehealth may not be a good choice if/when A physical examination or in-person treatment is necessary There’s a problem that is difficult to describe or see over video (e.g., abnormal movements) Certain tests are required, such as blood draws The patient is not comfortable communicating via video or by phone The patient is inclined to get distracted or wander off when not engaging in person. Keys to a good telehealth visit Tips for a successful telehealth appointment: Use a private, quiet indoor space — telehealth from a car (never a moving one!) should be for emergencies only. Make sure there’s a strong, stable internet connection on the device. Ideally, use a device with a stable camera that can stand alone — a tablet or desktop computer is preferable to a phone. Two or three days before the appointment, test the video software, the internet connection, camera, and microphone to make sure everything is working and that video and sound are clear. At the start of an appointment, give the provider a contact phone number in case the connection is lost. While a caregiver may help with communication or give information to the clinician, the autistic adult should be available to appear on camera for as much of the visit as possible. ECHO for Autism is a good resource for providers and patients to learn more about using telehealth to deliver care.

words matter

The Language of Autism

We understand that how we talk about autism matters. Our intent is always to incorporate language that is accessible, inclusive, and reflective of the priorities of the autistic community.

inclusion

Dr. Tim Buie on the important role caregivers play on the medical team

The clinician-caregiver partnership is vital to successful health care experiences.

Empowering advice on caregivers and patients as experts.

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