The increased awareness of autism and associated neurodivergent traits in adults has led many to seek testing and/or a diagnosis. Autism is commonly associated with childhood, the assumption being that if a person is autistic they will have received that diagnosis when they were young. This is not always the case. Some adults struggle with the symptoms and challenges associated with autism but have never received a formal diagnosis. The increased awareness of autism and associated neurodivergent traits in adults has led many to seek testing and/or a diagnosis. Adults often consider autism when a person in their family is diagnosed and they recognize autistic traits in themselves. Because autism was long assumed to be more common in boys and men, it has traditionally been underdiagnosed in girls and women, who may still find getting a diagnosis as an adult particularly challenging. Who can diagnose autism in adults? Adults seeking a formal diagnosis can consult with their primary care provider, a psychiatrist, a psychologist, or a social worker to understand how best to seek an evaluation. A psychiatrist (MD), psychologist (PhD), or neuropsychologist (PhD) usually makes the medical diagnosis of autism spectrum disorder (a full neuropsychological evaluation is not required). A medical diagnosis is necessary, however, to apply for any disability benefits on the basis of an autism diagnosis. In this video, Dr. Chris McDougle, Director of the Lurie Center for Autism, discusses the process of seeking an autism diagnosis as an adult. Dr. Chris McDougle, Director of the MGH Lurie Center for Autism Where to learn more about an adult diagnosis The Association for Autism and Neurodiversity (AANE) has advice for adults seeking a diagnosis. They offer information on why a person might (or might not) want to seek a diagnosis, and what an ASD diagnosis as an adult means across the lifespan. The website also provides useful advice on finding resources for help and how to talk about being autistic with family, friends, and employers. AANE also has many online groups that provide support and a sense of community for neurodivergent adults, as well as for their caregivers and families, regardless of whether they have a formal autism diagnosis. More resources Autism Speaks Adult Diagnosis Tool Kit This resource explains the diagnostic process, has links to clinicians who can diagnose ASD, and provides other information useful to those considering pursuing a formal ASD diagnosis. Formal Diagnostic Criteria for Autism The medical criteria that clinicians use to diagnose autism. Making Sense of the Past as a Late-Diagnosed Autistic Adult by Katie Rose Guest Pryal in Psychology Today After all these years I finally understand that there’s a scientific reason for the way I am different, and that I didn’t do anything wrong by being this way. —Maggie C., autistic adult

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?

Transitioning from pediatric to adult care can be challenging as autistic patients outgrow the services of pediatric practices and enter a fragmented healthcare system that is less familiar. It can be a challenging time as autistic patients leave the services of pediatric practices and enter a health care system for adults that is less familiar with their needs and less prepared to meet them. There’s no required age for this transition to happen, but it is usually between the ages of 18 and 22, and can happen as late as age 26. See our articles on insurance for more information about important decisions at ages 22 and 26. Got Transition, a site focusing on health care transitions, is a valuable resource for families and self-advocates. It offers a readiness assessment tool, a transition timeline, and a robust frequently asked questions section. There are a few key steps involved when transitioning from a pediatrician to an adult primary care provider (PCP). Consider a “meet and greet” pre-appointment For autistic people who require high levels of support, setting up an additional appointment when booking the patient’s first visit with their new PCP can be helpful. It can be reassuring for caregivers to meet alone with the PCP before the patient’s first visit to establish if the clinician is indeed a good fit. (Most insurance providers will cover this kind of consultation, but it’s always good to check.) Because the transition from pediatric to adult care often comes at a time when other big transitions are afoot, it may also be helpful to talk about any planned transitions from school to work or adult services either at the caregiver-clinician visit or at the first appointment. As part of the HMS Clinician Course, Dr. James Bath, Primary Care Provider for Autistic Adults at the Lurie Center for Autism, helped to develop an Initial Visit Patient Profile form to facilitate a positive clinician-patient exchange of the key information during this transition. Information to bring to a primary care visit Transfer medical records Once the new PCP is in place, it’s important to make sure that health care records are transferred to the new practice. Be sure to include specialist records as well as those from the pediatrician. These records should include all appointment notes as well as results of lab work, imaging, or other tests, so the new PCP has access to health history as well as current medical concerns. Tips on transferring records: Most clinicians use electronic health record (EHR) systems to store medical data, but sometimes different vendor systems are incompatible. It’s best to ask the receiving clinician’s office if there is anything you need to do on your end to facilitate a successful handoff. Be sure to include records from specialists and evaluations such as neuropsychological reports (if these were completed through a school district, they will not be in the electronic medical record, but digital copies should be available from the provider). If you’ve used a patient portal, download and keep copies of all records, as you will no longer have online access to this information once you leave a practice. The difference between Electronic Medical Records (EMR) and Electronic Health Records (EHR) Although the terms Electronic Medical Records (EMR) and Electronic Health Records (EHR) and are often used interchangeably, there are importance differences between them. EMRs are digital patient records and charts, while EHRs are that and more. EHRs are more comprehensive and include tools for prescribing medications electronically, ordering labs, streamlining internal and external communications, and sharing data. Medication Some things to keep in mind about medication: Keep a list of all medication, dosage, instructions, and prescriber information and bring it to the first appointment. Keeping a master list will help to ensure that there are no missed doses during the transition process. Discuss both current and past medication use with the PCP, including reasons for any past medication discontinuation, so a full medication history is clear. Remember to pass along any new medication orders to care team members who distribute medication, such as day program providers, group home staff, teachers, therapists, or home care aides. Dr. James Bath gives advice the transition from pediatric to adult care Care team communication Dr. Bath reinforces the value of communication during the transition from pediatric to adult care, and establishing a role as an essential part of the health care team. He notes that “The most integral part of having a successful health care transition is that we as the providers are listening to the families and the patients, and what their experiences have been and what has been successful and what has not been so successful, because that history is invaluable.” During the first appointment, patients and caregivers should explain how they choose to be addressed, including preferred pronouns. Many people choose to be called by their first name or a nickname, while others opt for Mr., Miss, or Ms. The use of “Mom” and “Dad” might best be left behind in the pediatric office, and generalized terms may feel uncomfortable or condescending (for example, “pal” or “sweetie”). Personal identity and the terminology around it can be especially important for autistic self-advocates, so this is a key conversation. Susan Senator, and AAHR subject expert and parents of an autistic adult, discusses the language of autism in Psychology Today, “Please don’t call my autistic son “Buddy.” Like a general pediatrician, PCPs coordinate care across specialties, so it’s important to make sure they are aware of other clinicians providing care. That may or may not be clear through the medical record alone, so it can be helpful to have a list of names and contact information for all specialists and other providers on hand for the PCP. Maura Sullivan, the parent of two autistic young men, understands the need for balance when communicating about health — that everyone needs to be part of the conversation and to participate in care in whatever way they are able. As my kids transition, I want more of their voice to be heard and less of my voice to be heard – Maura S.