Midlife Adulthood
Staying healthy in middle age
Few life situations stay the same over the years – plans made during the transition to adulthood may need rethinking. Bodies change, too, and preventive care becomes even more important.
Keeping up with life plans is key as autistic adults and caregivers reach maturity
Maintaining continuity while being prepared for changes
Make sure paperwork is up to date
Staying organized
Keeping benefits in place often requires an annual review
Updating health care documents
Check in with the family – adult siblings may need to understand how to be prepared.
Manageable moments
Meeting the challenges of midlife
Some issues that arise with autistic adults are encountered for the first time at midlife, while other things need revisiting or ongoing attention
Useful Information about Preventive Care
As part of its free course, Clinical Care for Autistic Adults, Harvard Medical School developed a useful time line for preventive health care screenings and immunizations for autistic adults.
This downloadable and printable Autism Preventive Health Table was developed as part of the Harvard Medical School’s course, Clinical Care for Autistic Adults. It lists baseline preventive health care screenings and immunizations for autistic adults. The intended audience is primary care physicians but feel free to use as a reference and to share with your PCPs or other providers. Key points for caregivers and self-advocates to note:
Schedule all annual exams well in advance so that the appointment happens at a time of year and time of day that works best for the patient/family.
If possible, gather information about health conditions that can run in families such as heart problems, cancer, diabetes, depression, and addiction. This information can help identify the most important screenings and how often they should be done.
A guide to share with providers for preventive health care
The information on the table is based on the following sources:
Adult Immunization Schedule by Age, CDC, 2023.
CDC: Cancer Screening Tests. Accessed on April 1, 2023.
Dhanasekara CS, Ancona D, Cortes L, et al. Association Between Autism Spectrum Disorders and Cardiometabolic Diseases: A Systematic Review and Meta-analysis. JAMA Pediatr. 2023;177(3):248-257. doi:10.1001/jamapediatrics.2022.5629
Isenberg BM, Yule AM, McKowen JW, Nowinski LA, Forchelli GA, Wilens TE. Considerations for Treating Young People With Comorbid Autism Spectrum Disorder and Substance Use Disorder. J Am Acad Child Adolesc Psychiatry. 2019;58(12):1139-1141. doi:10.1016/j.jaac.2019.08.467
Massachusetts Department of Developmental Services Adult Screening Recommendations 2019, Mass.gov.Accessed on April 1, 2023.
Schick, Elizabeth, Is It Safe to Sedate our Son at the Dentist? Autism Speaks. 2014. Accessed on April 1, 2023.
Screening and Preventive Interventions for Oral Health in Children 5 Years and Older and Adults, U.S. Preventive Services Task Force. Accessed on April 1, 2023.
Sexually Transmitted Infections Treatment Guidelines, 2021, CDC. Accessed on April 1, 2023.
Dr. James Bath, a primary care physician for autistic adults at the MGH Lurie Center for Autism, discusses the importance of preventive care as key to a long, healthy life:
Dr. James Bath, Adult Primary Care Physician at the MGH Lurie Center for Autism
Common Gastrointestinal Conditions
Autistic people are more likely to suffer from gastrointestinal (GI) ailments than the general population. They are especially more difficult to identify and diagnose in adults with communication challenges. GI...
Autistic people are more likely to suffer from gastrointestinal (GI) ailments than the general population. They are especially more difficult to identify and diagnose in adults with communication challenges. GI symptoms can range from mild stomachaches to serious, persistent vomiting. There is no single set of signs, symptoms, or treatments that applies to all autistic patients.
AAHR has articles on the most common GI conditions:
abdominal pain
constipation
GERD and acid reflux
Seeking care
Although GI symptoms are common, no digestive condition should be accepted as simply part of being autistic. It’s important that GI symptoms are addressed by a PCP or gastroenterologist to avoid serious health consequences during the adult years.
An adult patient who has been under the care of a pediatric gastroenterologist for ongoing digestive issues should transfer their care to an adult gastroenterologist. Communicating about the symptoms, how they present, and how they’ve been treated — through diet and/or medication — is important to assuring good health over the lifespan.
Behavior as communication about pain
Caregivers should note that behaviors of all kinds are a form of communication, and sometimes that communication is speaking about pain. Aggression and self-injury are not core symptoms of autism. When such behaviors do appear, it’s important to consider whether they indicate that an autistic adult is in pain. Gastrointestinal problems often create the kind of discomfort that can lead to behaviors (or an increase in the kinds of behaviors) that are core signs and symptoms of autism. Examples of behaviors that may indicate pain are:
self-biting and mouthing behaviors
chewing clothes (often sleeves), paper, or other objects
ingesting nonfood items (pica)
aggression against others
twisting of the midsection or rubbing the abdomen against furniture
rubbing or scratching neck or throat areas
escaping or bolting
an increase in repetitive behaviors or vocalizations.
Autistic adults or caregivers should record when, where, and how often these behaviors occur, in preparation for discussing them with a PCP or gastroenterologist so that a full diagnosis can be made. If the underlying cause turns out to be GI distress, treatment of that condition very often results in an improvement in the behavior(s). AAHR has more information on communicating about pain.
Keep in mind that GI issues are not always the culprit. Mental health issues such as anxiety can also trigger GI symptoms, and other pain-related behaviors could be caused by dental issues, migraine headaches, or other kinds of physical distress. Each of these possibilities can be discussed with a PCP, who can then make referrals to one or more specialists.
We recognize that gastrointestinal problems are very common in the population of individuals with autism. And that’s true at all ages, from childhood to adulthood. The frequency of GI issues in individuals with autism is greater than the general population. It’s perhaps 2 to 3 times more frequent to see gastrointestinal problems in this population than the general population.
Dr. Tim Buie, Pediatric Gastroenterologist, Boston Children’s Hospital
Mental Health Parity
All interaction with the insurance company, including phone calls, needs to be documented in writing. Email is okay as long as it’s clear that any information shared comes directly from the insurer.
The Mental Health Parity and Addiction Equity Act of 2008 (MHPAEA) requires insurance companies to cover mental, behavioral, and substance use care equal to/in the same way as physical health care. For example, under this law, if an insurance plan pays 80% of the cost of seeing a clinician within their insurance network, then by law it wouldn’t matter if that provider was a PCP, an ear-nose-and-throat doctor, or a psychiatrist. The Mental Health & Autism Insurance Project works to explain the MHPAEA and ensure that this law is enforced.
In September, 2024, the U.S. Departments of Health and Human Services (HHS), Labor, and the Treasury released new final rules implementing MHPAEA. While the practical implications of these changes will require greater explanation before they are implemented in January of 2025 and 2026, there’s a fact sheet with some details available now.
Do all insurance plans have to follow the MHPAEA?
There are still some insurance plans that are not required to follow the mental health parity law. These include:
Medicare
U.S. Department of Defense/Tri-Care
some Medicaid plans (fee-for-service plans)
some non-federal government plans
some workplace plans that have fewer than 50 employees
plans that have been active since before March 2010.
The National Alliance on Mental Illness (NAMI) has information on mental health parity. This includes a list of benefits and services that must be covered equally. For autism, there are also state-by-state mandates.
Recognizing disparities in mental health coverage
Even though the law requires the same level of coverage for mental and behavioral health and physical health care, it’s clear from the list above that many plans aren’t required to cover mental health, while other plans have been effectively avoiding it or under-covering it. People with Medicaid coverage can use this interactive map with contact information for the Medicaid Director in each state.
ParityTrack is an organization that follows mental health parity compliance state by state. It provides information on laws passed in each state and how they affect the mental health services delivered. For example, a 2018 Iowa law requires insurance companies to cover telehealth visits.
The U.S. Department of Labor (USDOL) is responsible for ensuring that insurance companies comply with the MHPAEA. The USDOL has advice about mental, behavioral, and substance use benefits, and explains how the organization enforces the mental health parity law.
Read the news release about the Department of Labor’s 2022 report to Congress on insurance companies and mental health parity.
If care is denied, file an appeal
It takes effort to appeal an insurance claim, but if a claim is denied, appealing is one way of petitioning for coverage. When a claim is denied, the written notification will include instructions for filing an appeal and a contact number for questions.
All interaction with the insurance company, including phone calls, needs to be documented in writing. Email is okay as long as it’s clear that any information shared comes directly from the insurer.
If there’s proof an insurance company has broken the law in denying rightful mental or behavioral health care, another way to take action is to report the violation to The Kennedy Forum.
Advocate for enforcement and more for autistic people
Register to be part of the Grassroots Advocacy Network at Autism Speaks. This network works to raise awareness of the needs of people with autism and enforce laws that protect autism care.
Visit the Mental Health America Advocacy Network for a toolkit to improve compliance by contacting state legislators, and more.
For valuable information about appeals, consult the Autism Law Summit’s ABA Authorization and Appeals Playbook.
Planning for Medical Emergencies
Everyone—autistic people and neurotypical people—can benefit from planning for medical or mental health emergencies.
Be ready: Make a 'Go Bag'
Emergencies are easier to handle if information and supplies are at the ready. Keeping a Go Bag near the door or in the car can help.
The Go Bag – a printable list of things to have on hand to help prepare for emergencies
Start by calling the PCP
Everyone—autistic people and neurotypical people—can benefit from planning for medical or mental health emergencies. If a trip to the emergency department (ED) is necessary, you’ll want to alert your primary care provider’s office (another person in the household can make this call as necessary). It’s especially helpful to request that the PCP call ahead and let the ED or hospital know that an autistic patient is on the way and they can share any pertinent information that can be helpful for your care.
Make a call tree
Another key part of the plan is to create a call tree that includes someone in the circle of support who can contact others who should be alerted to the emergency. This information should be clearly displayed in a prominent position in your home. This is especially important for first responders-police, fire, and EMS – in case you are alone during an emergency. The call tree contacts can include service provider or group home staff, neighbors who can assist with caring for others in the family, and extended family.
Register with the local police
Most local police departmetns have a way of registering citizens with special health needs. If there are details they should know about how autism presents in you or the adult in your family take a moment to communicate about those concerns. For example, some people panic and hide when they hear sirens, see someone in uniform, or even hear the doorbell.
Calling 911
Most clinicians’ offices direct people in crisis to the local emergency department or urgent care center. If calling 911 is the best or only option, clearly state to the dispatcher that the patient is a person with autism and let them know about any communication or behavioral challenges that might be misunderstood. Many first responders are trained to interact with autistic people but many are not – it’s important to know ahead if time if local police, fire, and EMS are trained in working with the autistic community. Autism Speaks has a guide for first responders that can be shared with local public safety organizations, including information for dispatchers. In addition, there are several programs that train first responders to safely interact with autistic people, including Autism Alert and Autism Risk and Safety Management.
Tips for interacting with first responders
Whether an emergency occurs in the home or out in the community, an autism ID can be useful. It can be a simple card with details that are specific to the individual and can help avoid misunderstandings in stressful situations. Caregivers can share an ID card or self-advocates can carry them and share as necessary.
The card be shared with first responders or with staff and clinicians in emergency departments, urgent care, and hospitals. There are Medicalert IDs for autism and also sites that can create an autism ID for a fee. This one was created using a free site called Canva:
A sample identification card that outlines what strategies autstic people can use to communicate in an emergency
Mental health emergencies
When there’s a mental health emergency, think carefully about what the goal is for taking someone to the Emergency Department. Dr. Robyn Thom, a psychiatrist at the MGH Lurie Center for Autism, discusses expectations for a mental health care visit to the Emergency Department:
Dr. Robyn Thom on things to consider when going to the emergency room for a mental health emergency.
A 3×5 identification card to print and use for communicating in an emergency
moment of clarity
Getting an autism diagnosis as an adult
Is it worth seeking a diagnosis later in life? Dr. Chris McDouble, Director of the MGH Lurie Center for Autism, breaks it down.
Q&A
Women and Autism
This Q & A is based on a LurieNOW article by Dr. Alyssa Milot Travers, a licensed psychologist at the MGH Lurie Center for Autism with specific expertise in women on the autism spectrum. Dr. Travers is also an Instructor in Psychiatry at Harvard Medical School.
How prevalent is autism?
Autism is a diverse condition that affects individuals of all genders; the overall prevalence estimate of autism in the U.S. is one in 36 children. According to the Centers for Disease Control and Prevention (CDC), as of March 2023 about 4% of boys and 1% of girls age 8 years have autism.
Is ASD underdiagnosed in women?
Although an autism diagnosis occurs more often in men than women, recent research suggests that autism in women may be underdiagnosed or misdiagnosed. Recognizing and understanding how autism presents in women is crucial to an accurate diagnosis, appropriate support, and targeted interventions. The evolving understanding of gender differences in autism is dismantling the notion that autism is more or less a “male condition.”
Recognizing the uniqueness of each autistic individual's experience, what other traits may be more common in women with autism?
Autistic women are more likely to develop compensatory strategies to mask their challenges. For example, women often have stronger social imitation skills and the ability to mimic social behavior compared to men. Due to their social foundation, girls may develop one or two close friendships, helping them absorb social rules and norms. Their strong social interest may lead them to “camouflage” or compensate for social understanding and communication challenges, making these vulnerabilities difficult to detect in everyday interactions or larger classroom or employment settings. As a result of these differences, women are often more likely to be diagnosed later in life, if at all.
So is there a detriment to masking and camouflaging? These behaviors are often viewed positively as coping skills by those not familiar with neurodiversity.
The ability to camouflage and mask their challenges can lead to misinterpretation of the degree to which autistic women actually struggle, as they may appear more socially competent than they feel or understand. While non-autistic people of both genders and autistic men may also engage in masking, autistic women tend to do so to a greater degree. The burden of masking can be exhausting, and may contribute to feelings of isolation and mental health issues.
Many men with autism have special interests and repetitive behaviors — is this also true for women?
Restricted interests and repetitive behaviors occur in autistic men and women; however, the nature of these behaviors can differ. Traditionally, clinicians have been trained to recognize stereotypical male-associated restricted interests, such as transportation, dinosaurs, or space. In contrast, autistic women may develop restricted interests that are more closely aligned with societal norms, such as animals, art, celebrities, or literature.
This divergence can contribute to the misperception that women with these interests are simply showing enthusiasm for “normal” hobbies rather than autistic traits. Repetitive patterns of behavior in women can manifest as classic autistic behaviors like rocking or hand/finger movements, but may also appear as behaviors not necessarily associated with autism, such as perfectionistic tendencies or restrictive patterns of eating/eating disorders.
Are there co-occurring conditions that are more common in women?
What are some reasons a woman might seek an ASD diagnosis?
Some women recognize autistic traits in themselves when a family member, partner, or friend is diagnosed with autism. An accurate diagnosis enables them to receive the appropriate therapeutic treatments, supports, and accommodations, as well as access to services and connection to available resources.
How does gender identity impact a woman seeking or receiving an autism diagnosis?
Most research about gender identity seems to focus on cisgender individuals, or those who have a gender identity matching their sex assigned at birth. When meeting with a provider, it is important to ask about their experience with women on the spectrum and how they tailor assessment methods and support for woman patients/clients. Women often benefit from woman-specific supports and resources.
Many individuals, including autistic persons, embody a range of gender identities, including but not limited to nonbinary and transgender. Recent research shows an increase in gender diversity within the autistic community compared to the population at large. Therefore, there has been a recent shift toward embracing gender diversity beyond the cisgender paradigm in research. Embracing an expanded understanding of what it means to be autistic will lead to a more inclusive perspective that ensures all individuals, regardless of gender, receive the recognition and support they deserve.
Where can I learn more?
The Autistic Women and Nonbinary Network provides useful information and resources for gender-diverse autistic individuals.
For diagnostic information, see our article about seeking an ASD diagnosis as an adult.
Recommended Reading and Viewing
For women:
Camouflage: The Hidden Lives of Autistic Women by Dr. Sarah Bargiela
22 Things a Woman with Asperger’s Syndrome Wants Her Partner to Know by Rudy Simone
The Autistic Brain: Exploring the Strengths of a Different Kind of Mind by Temple Grandin
Odd Girl Out: An Autistic Woman in a Neurotypical World by Laura James
From the American Autism Association: 5 TedX Talks from Women with Autism
For caregivers:
A Guide to Mental Health Issues in Girls and Young Women on the Autism Spectrum: Diagnosis, Intervention and Family Support by Dr. Judy Eaton
Girls Growing Up on the Autism Spectrum: What Parents and Professionals Should Know About the Pre-Teen and Teenage Years by Shana Nichols with Gina Marie Moravcik and Samara Pulver Tetenbaum
For partners of autistic adults:
Co-occurring conditions
Common Gastrointestinal Conditions in Autistic Adults
Autistic people are more likely to suffer from gastrointestinal (GI) ailments than the general population, but that doesn’t mean that recurring discomfort should be accepted as simply part of being autistic.
