Adult Autism Health Resources for Young Adulthood

Working Toward Smooth Transitions

In the autism community, people often refer to turning age 22 as “the cliff.” It’s a time when many of the services and supports that autistic people get as children end, and there’s very little to replace them. Many organizations and advocates are working to build those services and help people access the supports that do exist. AAHR is committed to doing its part improve the access to quality medical care, and to make that care better, too.

Tackling Insurance

Children with autism receive many benefits by law. However, most of these end when the child becomes an adult. Two key milestones are at ages 22 and 26.

Navigating insurance

The rules around insurance and insurance coverage change all the time. We provide links to the resources that can help.

Turning 26

Legally, adult children may not be on a parent’s health insurance policy after they turn 26. Disabled autistic adults can qualify to stay on a parent’s policy – here’s what you need to know.

Manageable moments

Top of mind for young adults

Care Transitions

Transitioning from Pediatric to Adult Care

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.

Communication Strategies, Staying Healthy

Dietary Plan Tool for Schools and Day Programs

Autistic adults with special dietary needs and behaviors around food can benefit from a form that outlines those needs and the best interventions for use at school or day programs. Autistic adults with special dietary needs and behaviors around food can benefit from a form that outlines those needs and the best interventions for use at school or day programs. Many school districts have a similar form for the school nurse but that information doesn’t always follow the adult after they turn 22. We’ve designed an easy-to-use template based on the dietary information school districts require.

Common Conditions

Common Medical Conditions in Autistic Adults – An Overview

Understanding some of the common medical conditions that occur in autistic adults is a key part of managing medical care. Health needs change for everyone as they get older and it’s no different for autistic people, but understanding and approaching the aging process can look a little different for autistic adults. Some medical conditions occur more frequently in autistic people and they may also present differently than in their neurotypical people. Medical conditions may often appear in childhood while others might only emerge later in life. They often occur jointly with other health conditions and are often referred to as “co-occuring” or “co-morbid” conditions. Mental health conditions Mental health issues are common in people with autism, with up to 80% experiencing some mental health condition. They can include: ADHD (attention deficit hyperactivity disorder) Anxiety Depression Irritability Physical conditions Many physical conditions, including heart and lung conditions and diabetes, are more common in adults with autism. Other common physical conditions may include: Neurological issues Migraine headaches Seizures Sleep problems Stomach and digestive problems Constipation Acid reflux (GERD) Dietary issues (food allergies and intolerances) Pica Abdominal pain

Caregiver Guidance

Keeping Important Paperwork Up to Date: A Checklist for Caregivers

Caregiving is a full-time job that includes not just keeping people fed, safe and happy, but making sure that financial, legal and social service supports stay in place. Insurance, government benefits, and long-term planning all require attention at different points in the year. This checklist can serve as a reminder of the key information that needs tracking and reporting, and can serve as a guide when transitioning from one caregiver to the next. Annual Review of Individual Service Plan (the Adult Service Provider’s Version of an IEP) The plan outlining support services is usually written to cover two years, but there should be an annual review meeting with the service provider and the state agency providing the funding. The plan can then be updated as necessary. Social Security Income Reporting For those who are employed, monthly reports are required. Social Security disability (SSI and SSDI) recipients are no longer required to report expenses annually. However, the Social Security Administration reserves the right to audit expenses at any time. Keep and store receipts for all expenditures from the Representative Payee account. Organize by month and year and keep with taxes for at least seven years. This way you know exactly where they are if you need them. Annual Probate Reports for Guardians (varies by state) The date for reporting varies from state to state because the laws governing guardianship are different. Often it’s on the anniversary of the date when guardianship was granted by the court. Many states require a yearly expense report, so it’s helpful to have an organization system for keeping and filing receipts and expenses. Letter of Intent A Letter of Intent is a document many families include in their estate plan to help the next generation of caregivers understand the key supports and preferences of the disabled adult. (Learn more about letters of intent from Special Needs Financial Planning). Everyone’s needs and preferences change over time. Review and update yearly to ensure the Letter of Intent reflects the most recent priorities in the life of the autistic person served by the letter. Annual Medical Appointments parent(s)/caregiver(s) autistic adult spouses, partners, and siblings, too annual physical with PCP dentist optometrist gynecologist/urologist Medication Renewals and Refills Some prescriptions require a new prescription from a provider on a monthly basis (example: stimulant medications). For many other medications, prescriptions can be written to allow refills for longer periods (up to a year). Schedule in-person visits so that they take place before prescriptions expire. Open Enrollment for Private Health Insurance Keep track of enrollment periods, as dates and opportunities vary. Some employers offer open enrollment at the end of the calendar year, while others may offer this window at the beginning or end of a quarter, such as in July or September. Medicare and Medicaid renewal. Medicare always rolls over at the end of the year. For the most up-to-date information about coverage, contact them directly at 1-800-MEDICARE. See also our resources on insurance: Differences Between Medicare and Medicaid Finding Local Help with Autism Insurance Coverage Insurance: Turning 26

resources

Video: Dr. James Bath on transitioning to adult care

Dr. Bath is a Primary Care Provider for autistic adults at the MGH Lurie Center for Autism

AAHR has more information on legal matters, common medical conditions, communication strategies and many other topics.

Q&A

Autism: Myths vs. Facts

Autism has its mysteries and there are many things we don’t know. Some mysteries have been solved and the statistics change frequently, but there’s still a lot of misinformation out there.

Here’s what we know now.

Myth: Autism can be cured or outgrown

Facts: Autism is a lifelong condition that is often, but not always, diagnosed in childhood. The challenges of ASD can be met and managed, but the condition itself cannot be eliminated.

Myth: Autism can be caused by vaccines

Facts: Extensive scientific research over many years shows no link between childhood vaccines and autism. Because the symptoms of ASD often become obvious during the same period young children get vaccinated, the theory that vaccines cause ASD persisted among some people including parents whose children had digestive issues.

Myth: Autism is purely a genetic condition

Facts: Currently, researchers can identify genetic causes in only 10-20% of people with autism. For the remaining 80% of people, there appears to be environmental causes, but it’s not yet clear what those are or if they can be prevented.In fact, at the current time, for 75-80% of individuals with ASD, a genetic abnormality linked to causing ASD is not identified.  Research continues to explore the possible environmental factors including advanced parental age, premature birth, early-life immune insults, and possibly exposure to air pollution, maternal autoimmune disease, and high maternal stress during the pregnancy.  No definitive links to any of these factors has been proven.

Myth: People with non-verbal autism are always intellectually impaired

Facts: Verbal communication does not always correlate with intelligence. People can understand everything they hear and are still not able to speak; some people with ASD have communication devices and other ways of making their thoughts and needs known. It’s not correct to assume that a person with non-verbal ASD doesn’t understand what you are saying or what is happening around them.

Myth: Autism is a psychiatric disorder that makes people prone to violence

Facts: People with autism are no more likely to harm others than people in the general population. In fact, they are more likely to be victims of aggressive behavior. Aggression and self-injurious behaviors are not part of the diagnostic criteria for ASD and are indicators that something non-ASD-related is wrong. Behavior is communication – if a person with ASD is behaving in an erratic or emotional way, it is usually a sign of physical distress or anxiety, both of which can be addressed.

Myth: Autism occurs most often in males

Facts: Historically, autistic behaviors were studied and more readily recognized in men, but that is changing. Current research shows that girls and women with autism have behaviors or traits that may be different from how autism is seen in boys and men. Women are also typically diagnosed later in life. While the current male-female ratio is 4:1, these numbers are shifting as more women are being diagnosed.

Myth: People with autism do not want intimate or romantic relationships.

Facts: Although adults with autism spectrum disorder may have difficulty with social communication, many desire and pursue intimate relationships. People with autism experience the same biological functions and range of emotions, including love and attraction, as their neurotypical peers. This means that many people with autism value close and intimate connections with others. Some people with autism are interested in dating, living with a partner, getting married, and having a family. Others may choose to be alone or show little interest in romantic relationships. With proper support, adults with autism can find and nurture healthy, fulfilling relationships.

It’s important to note that because some people with autism struggle to understand indirect or nuanced social communication, they may be vulnerable to physical, emotional, or sexual exploitation and abuse. It’s also vital for all people with autism to receive appropriate sexual and reproductive health care, including access to contraception and sex education programs.

gender identity