How to find one • Challenges • Specialty Focus: Ob/Gyn
Finding an adult care specialist
Primary care providers are trained to diagnose and treat many common illnesses and some chronic conditions, like asthma and high blood pressure. But if the condition is rare, complex, and/or the PCP thinks you need focused care, they will refer you to a specialist. Common ones are cardiologists for heart health, dermatologists for hormones and metabolism issues like diabetes and thyroid problems, and gastroenterologists for the digestive organs, including the stomach, bowels, pancreas, liver, and gallbladder. There are also specialists who focus on diseases, like cancer. Sometimes a medical issue is covered by overlapping specialists and your PCP. Whether you have such an issue or if you just have multiple specialists, coordinating care is important so that each one knows about any other conditions you have and the treatments you're receiving. You may need to give your permission for different doctors to share information about your health with each other.
How to find a specialist
If you need to find or see a new specialist, just like finding a PCP, you can start by asking your existing pediatrician and pediatric specialists. The ACNet, Autism Speaks Resource Guide and your health insurance provider are also good sources to check. If you need to find a specialist for a rare condition, online condition-specific organizations and their patient groups are another great source.
Challenges to finding specialists
It can be more challenging to find a specialist who also has experience with autistic adults than it is to find a PCP. This is because there are fewer doctors in each specialty than there are in primary care, and their training is more focused on a particular body system. Depending on where you live and what kind of specialist you need, your options may be limited. As Dr. O’Brien mentioned with finding a PCP, 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. It is an opportunity for you to learn together and for you to teach them more about autism.”
- Matthew O’Brien, PhD, BCBA-D, Clinical Psychologist, University of Iowa Hospitals & Clinics, Center for Disabilities and Development
Specialty focus: obstetrics and gynecology (Ob/Gyn)
The American College of Obstetrics and Gynecology (ACOG) recommends a first visit to the gynecologist for girls ages 13-15 and a wellness checkup each year. Their article, Should My Teen See an Ob-Gyn? Here’s What I Tell Parents is a good explanation as to why.
How to find an Ob/Gyn
Several kinds of providers can do a well-woman checkup, including:
- A gynecologist
- A family practice doctor
- A family nurse practitioner
- A women’s health nurse practitioner
To find a provider who specializes in caring for young girls and women with autism:
- Ask your daughter’s pediatrician or primary care provider to recommend a provider.
- Ask your friends and other autism families in your community.
- 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.
What to expect at the first visit and prior to age 21
Rest assured, the first visit to the gynecologist as a teen or young adult will most likely just include a talk between patient and provider about development and a brief physical exam. Unless you or your child 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. Women with autism are less likely than other women to go for annual well-woman visits. So getting used to or having your autistic young adult get used to going for these checkups is a good way to promote healthy living throughout life. 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. The ‘Ob’ part of Ob/gyn refers to obstetrics, the specialty concerned with childbirth and the care of women giving birth. Having trained in both, most physicians will practice both. But some will focus on one field over the other. If and when the time is right to think about having children, you want to make sure you see a doctor who practices obstetrics. Midwives, healthcare providers who are trained to provide obstetric and gynecological services, can also be consulted.