Finding an autism-friendly OB-GYN

This following contains an excerpt from Autism Speaks Healthcare Transition Tool Kit with contributions from self-advocates and Autism Speaks contributors Brigid Rankowski and Lydia Wayman.

Adolescents and women with autism are less likely than their peers to visit an obstetrician-gynecologist (OB-GYN). This, despite the fact that autism can make menstruation, menopause and reproductive health more difficult. For instance, autistic girls and women experience higher rates of menstrual disorders, polycystic ovary disorder and premenstrual syndrome. The result is untreated, misdiagnosed or missed diagnosed women's health conditions which lead to poorer health outcomes and quality of life issues.

A combination of factors contribute to the delay and avoidance of OB-GYN care including sensory sensitivities, communication differences and the potential for healthcare providers to misinterpret their needs. But lack of education provided to them and discussions them about reproductive and sexual health issues are also lacking -- often overlooked and sometimes even ignored.

One way to overcome this is to find autism-friendly OB-GYNs and healthcare providers sensitive to the needs of those with autism and related conditions. Here, we will discuss how to find one, how to plan for a visit and what to expect during exams. But first,

An overview of obstetrics and gynecology

The field of gynecology (GYN) specializes in women’s reproductive organs and health. The field of obstetrics (OB) specializes in pregnancy and childbirth. Many medical providers specialize in both (OB-GYNs or Ob/Gyns).

The American College of Obstetrics and Gynecology (ACOG) recommends a first visit to the gynecologist for girls ages 13-15 and then a well-woman checkup each year. Among the prime reasons: developing a positive relationship with the body and medical care leads to better health outcomes throughout life.

Getting used to these checkups takes time, for all girls and women. But it does get easier and making them a routine is known to lead to a lifetime of good health. Below are tips on how to get started, no matter you or your loved one’s age.

Providers who specialize in OB-GYN care

The most common providers of OB-GYN care and the recommended annual well-woman visit include:

OB-GYN doctors or gynecological doctors with credentialing as MDs or DOs
Women’s health nurse practitioner with credentialing as WHNP-BCs
Gynecological nurse practitioners with credentialing as Gyno GPs

Other providers could do these check-ups too, including family practice doctors and family nurse practitioners. But it is best to check to see with their experience and office set-up for well-woman exams.

If and when the time is right to think about having children, you want to make sure you see a doctor who practices obstetrics, solely or along with gynecology. Midwives, healthcare providers who are trained to provide obstetric and gynecological services, can also be consulted.

Finding an OB-GYN or other healthcare provider who specializes in caring for those with autism

It can be more challenging to find a specialist who also has experience with autistic patients. Depending on where you live and what kind of specialist you need, your options may be limited. If you are having trouble, call and ask any perspective provider if they are open to treating autistic patients.

“Even if they don’t have experience with autistic people, if they say they are open to it, that is a good sign,” says Matthew O’Brien, PhD, BCBA-D, Clinical Psychologist, University of Iowa Hospitals & Clinics, Center for Disabilities and Development. “It is an opportunity for you to learn together and for you to teach them more about autism.”

Ask your primary care provider to recommend a provider.
Ask your friends and other autism families in your community.
Check with your health insurance provider. Many have a searchable list of doctors covered by their plans on their website.
Use this listing of gynecologists from the Autistic Women & Nonbinary Network to find a provider in your state.
Look for an Autism Care Network site in your area.
Check Autism Speaks Resource Guide.
Contact our Autism Response Team.

What to consider when finding an OB-GYN

Do you or does your loved one prefer to see a woman provider?
What do you or does your loved one like about current healthcare providers?
What don’t you/they like?

Planning for the OB-GYN

When you find a new provider it is a good idea to call the office and schedule an office tour. Arrange to meet the staff, be shown around the office and ask any questions.

As part of that visit or on a separate occasion schedule a meet-and-greet appointment with the doctor. This will allow time to ask questions with the reassurance that no physical exam or treatment will be involved.

Ahead of the first visit

An office visit creates an opportunity to discuss any accommodations that would help make the first visit better for you or your loved one. You and your loved one should come up with a list of these, questions and concerns to ask the doctor and staff. For instance, you should:

Be specific about your or your loved one’s sensory needs and if there is anything the doctor and staff can do adapt the exam to ensure the appointment is as successful as possible. For example, If you or your loved one has an occupational therapist, ask about whether their recommended alternate positions and sensory issues can be accommodated during an exam.
Discuss you or your loved one’s communication preferences, especially if you or they are non-speaking or need visuals or communication tools to participate.
Find out when the office is less busy and schedule appointments for that time. This will limit the amount of time waiting to be seen and help reduce anxiety.
Discuss what a first visit and typical annual visit entails and a timeline of what happens. Ask for handouts or visual supports to help explain what happens during procedures.
Request that all medical language be accompanied by an explanation in simplest terms and procedures broken down step-by-step so you or your loved one can understand.
Discuss what is available to help you or your loved one to relax during an exam, if necessary.
Share special interests you or your loved have to help make a better connection with the staff.

What to expect on the first visit

Expect to be nervous. The doctor and staff are used to this, even from patients they have seen for years. It is okay to talk about it with them ahead of and during the exam. It is also okay to ask for breaks.

If you or your loved one has any questions, have them written out and/or practice asking them. You also may want to plan something special or schedule some self-care for after the visit – whether that be a trip to your favorite store or even a nap to relax.

The first visit to the gynecologist for a teen or young adult will likely just include a talk between patient and provider about development and a brief physical exam. Unless you or your loved one present with abnormal bleeding or pain, a pelvic exam will not be done. If you are sexually active, you may have tests for certain sexually transmitted infections (STIs). Most of the tests that teens need can be done by the doctor with a urine sample.

The first pelvic exam, which is an exam of the pelvic organs, and pap smear, a procedure to test for cervical cancer, are typically done at age 21. During the appointments leading up to this, the gynecologist can explain a woman’s anatomy, explain and show images of the procedures and share the instruments that are used.

Included in a gynecological exam will be a breast exam and a discussion about doing a self-exam to check for signs and symptoms of breast cancer. Forty percent of diagnosed breast cancers are detected by women who feel a lump, so establishing a regular breast self-exam is very important. The National Breast Cancer Foundation has both a video and guide to help teach about breast self-exams.

Considerations for turning 18

During transition planning (ages 14-17), it is common for parents/caregivers to begin stepping out of the exam room for part of the visit when a child reaches adolescence. However, it is always up to the patient whether they have someone present for all, some, or none of the visit. The doctor should accept whatever their preference is. Though, if a parent or support person is present, the doctor should direct their communication to the individual and allow them to communicate their own needs as much as possible.

It is important to note that once an autistic person turns 18, doctors talk to them, not parents/caregivers. After a person turns 18, informed consent, or the right to make decisions about your own life, shifts into their hands — even if they may have developmental or mental impairments that make them incapable of making important life decisions. So specifically, after age 18, parents can no longer automatically make medical decisions for their child or receive medical updates from doctors or access medical records without written permission from the child.

Parents will need legal permission to continue making decisions for disabled children after age 18, even if the child is financially dependent on parents and/or resides in an assisted facility. State laws require the needs and wants of a disabled adult be considered as much as possible for every decision made about that individual’s living conditions and medical care.