Do any of us really enjoy visiting a gynecologist?
Unfortunately, this can lead to serious consequences. OB/GYN visits are essential in maintaining and ensuring a person’s sexual health and physical health. OB/GYN visits are essential to those who are sexually active and not sexually active. People who are not sexually active may not necessarily need to go in for pap tests, but they still will need to go in for routine monitoring of cysts, tumors, and any potential cancer development (cervical, ovarian, uterine, etc.). Women may also need to go in to obtain birth control to regulate or kick-start irregular or ceased periods (that was particularly what my first visit was for).
Leah Grantham (an autistic adult) published a post on her Sex and the Spectrum series on the particular issue regarding autism and gynecology (as it’s spelled in Canada). I was inspired after reading her post to add to the conversation with my own personal perspective and continue to spread awareness on a topic which still remains under-discussed.
If you are an OB/GYN, here are 6 things you need to know:
1. You will have patients on the autism spectrum.
People with disabilities may vary in challenges and characteristics, but we all still participate in the basic stages of human development: physical and sexual. Basically, it means people with disabilities (including autism) are capable of developing sexual desires, act on sexual needs, become sexually active and getting pregnant. It also means people with disabilities can develop menstrual issues, fertility issues, STDs/STIs, menopause, cervical cancer, ovarian cancer, and genital-related infections. So individuals with disabilities need to be attentive to their physical and sexual health just as much as other people do.
Most medical professionals are aware of this. But once in a while, I’ll run into a medical professional who isn’t as knowledgeable about the sexuality component in people with developmental disabilities.
[pullquote]If a patient expresses a desire to become sexually active or become pregnant, it is important you respond to their desires with respect and dignity.[/pullquote]Do not assume that your patient is asexual. It is safer to assume that your patient is sexual and ask them the same set of questions as you would your other patients. This includes sexual history (past and present) and any plans for pregnancy.
When it comes to discussing birth control options and STD protection, it’s important that you remain considerate of any concerns your patient expresses in particular methods. Sensory issues play a significant role in autism, and different people on the spectrum will vary in their tolerances in utilizing the available methods. For instance, condoms are extremely difficult to use for some people on the autism spectrum due to the texture, feel, and odor of the material (latex, synthetic, or lambskin). You will also want to document any known allergic reactions (latex, oils, lubricant ingredients, hormone, spermicide, etc.). Once you are aware of the sensory issues and known allergies your patient has, it will be easier for you to make recommendations based on their needs.
Unless there is a specific unrelated fertility issue, people on the autism spectrum have the capability to become pregnant and bear children. Although not everyone will be able to develop the skills required in parenting and raising a family, there are plenty of us who have that capability to raise a family if we so choose. Therefore, if a patient expresses a desire to become pregnant and go through pregnancy, it is important you respond to their desires with respect and dignity.
2. Accommodations are essential. Period.
In the United States, the American with Disabilities Act states the requirements of public accommodations for individuals with disabilities (as pointed out in the ADA Title III). Although these requirements apply to people with any type of disability, the document focuses more on accommodations for people with mobility disabilities. As a result, medical professionals in the health care industry may not even be aware that people with developmental disabilities require accommodations, too. So the concept of having to make accommodations for patients on the autism spectrum might be new to an OB/GYN since an OB/GYN do not typically cover disability and sexuality in their licensing requirements. People with developmental disabilities may not require structural accommodations (such as ramps, elevators and wider entryways). But these people still need accommodations. Lighting, temperature, paint color on the walls, sound level, sound frequency, and furniture textures inside a clinic can strongly affect an autistic person.
Re-vamping your entire clinic or office space may rack up some costs and effort. But you can see this as benefiting all of your patients… allowing them to take in the relaxing effects of “neurodiverse friendly” accommodations. It will be sure to entice most anyone who walks into your clinic, and that’s well-worth the money (and the growth of your business).
You can…
- Place a tropical fish tank in the waiting room.
- Use light fixtures with incandescent light bulbs instead of fluorescent tube bulbs. A number of individuals (myself included) consider fluorescent lights to be a visual and auditory violation, which can increase anxiety.
- Have music playing at a low volume in the background.
- Monitor the thermostat to an average temperature range of comfort (not too cold or too hot). Be sure to ask your patient if the temperature setting is comfortable for them.
- Lower the ringer volume level of office telephones, or place the phones on vibration mode.
- Provide a weighted blanket or throw if the patient is sensitive to colder temperatures (which office environments often are). Weighted blankets also really help with providing applied pressure that autistic individuals often use for sensory input or reducing stress levels.
- Have pillows available if the patient expresses discomfort on the exam table.
If your patient has an object they like to hold onto for sensory input or reduce stress, allow them to bring it into the examination room so they can focus on that during the exam. Although this will not alleviate their stress level entirely, having something familiar for sensory input will make a difference.
At any point during the appointment, your patient may engage in stimming behavior. Do not be alarmed when this happens and allow them to stim. This is a positive thing. Stimming is a common behavior in people with ASDs, and one reason we stim is to calm ourselves from unfamiliar situations, as well as to provide balance to under-served or over-served sensory input.
Refer to Nominatissima’s post for more great ideas on accommodating your patient on the ASD spectrum.
3. Advanced preparation and a precisely spoken walk-through during any procedure are strictly required.
Prior to the first appointment
[pullquote]People with autism tend to handle experiences… even unpleasant experiences… a lot easier when they know in advance what that experience will be like.[/pullquote]According to Dr. Shana Nichols (clinical psychologist, author, and founder of the ASPIRE Center for Learning and Development), a potential patient on the autism spectrum can begin preparing as early as six months before their scheduled gynecology exam or procedure. They may want to take a tour of your clinic and get an idea of what your office environment is like. While they are there, you will also have an opportunity to introduce yourself in a casual set-up. Allowing the person to visit your clinic prior to the appointment when they request it is beneficial because people with autism tend to handle experiences — even unpleasant experiences — a lot easier when they know in advance what the experience will be like. Let them know how they will need to prepare for the appointment, what to expect during the appointment, and what (potential side effects or reactions) to expect in the following days after the appointment.
If you make major aesthetic changes to your clinic in between their introductory visit and the date of the appointment, let your patient know in advance so they will know what to expect when they walk in.
When the time comes to schedule an appointment, allow a longer time frame than typical appointment times. If a typical appointment lasts an hour, schedule for an hour and a half (two hours if necessary). People on the autism spectrum often need additional time to process the information that you provide them, responses to your questions and preparing for the procedures or exams being given. Some people may also need additional time to exchange communication with you, your nurses and your staff (via an accompanying interpreter or alternative communication device).
On date of appointment, before the exam or procedure
Before any procedure or exam, establish a “code” word or non-verbal indicator that your patient can use at any point that they want to stop or take a break. This will provide reassurance to your patient that they are in a safe place and still gives your patient a sense of self-control. Autistic people need to establish self-control in order to feel safe. And in order for any visit with an OB/GYN to work, the patient needs to feel safe.
During the exam or procedure
OB/GYNs usually do a good job on alerting patients the steps of a procedure they may be performing. It’s especially crucial you communicate with your patient every step you are about to take in a given exam. An example you may give to a patient during a pap test: “We will now be inserting an instrument called a speculum to open up the vagina. This instrument is made of metal (or plastic), and you may feel the muscles in that area stretching. This is being done so it will be easier for me to be able to see if your cervix, ovaries, uterus and vagina look normal. Now you will feel a slight pinch. This should not hurt. I am simply using a cotton swab to collect cells so we can test them in the lab to make sure your cells are healthy.”
After the exam or procedure
If test results are not available on the day of the appointment, you will want to provide clear written step-by-step instructions on how your patient can obtain their results. You will also want to let your patient know of any possible side effects, discomfort or sensations that may be felt inside the body following an exam or procedure (as explained earlier).
4. Visual or data-based communication and resources are helpful… VERY helpful.
People with ASD often rely on visuals and data for learning and processing information. This includes processing sexuality education and the various procedures that take place in an OB/GYN’s office. Provide your patient with brochures, links, and other resources you may have on your fingertips of the procedure or exam your patient would be coming in for. Do this during their initial introduction visit, prior to the first scheduled office visit.
When discussing birth control options with your patient, provide brochures and descriptions with precise drawings, photos, diagrams and comparison charts for your patient to take home and process to make their decision making easier. For instance, with pap tests, you can present material that falls something along the lines of this example or this example.
Here are a few other examples to help you get a better idea of what you can present to your patient:
Birth Control Tool (contains a customizable comparison table) | Association of Reproductive Health Professionals
STD Brochures – The Facts (contains downloadable PDF files) | Centers for Disease Control
Pelvic ultrasounds | Web MD (see page 3 of that article for drawing diagrams of the various ultrasound procedures)
5. Maintaining a professional persona will ensure less anxiety. Keep your personal emotions to yourself.
Over the years, I have visited several OB/GYN offices… most which were not pleasant, but still well-handled. But one particular visit with an OB/GYN turned out to be an especially distressing experience. This particular doctor (and the clinic) broke a number of accommodation rules. Her tone of voice lacked a sense of calm, and she raised her voice when expressing surprise or disagreement. She interrupted me several times during our consultation. Her facial expressions were hauntingly dramatic. And the worse part of that experience is when she pulled out the ‘God Card’ — stating that “you cannot trust a man (even when you’re in a solid committed relationship) to go out and cheat on you and possibly give you an STD… but once you’re legally married, a condom is no longer necessary and it’s up to him and God.”
Oh, really? And a partner is not as likely to cheat when you’re married as when you’re not married? Bullshit. (I wish I had responded all that to my doctor had I processed my thoughts fast enough.)
Obviously, I have no plans to return to that particular clinic. One’s personal views and religious beliefs are to be fully respected. But it is beyond inappropriate to bring that into any professional relationship, including a doctor’s office visit.
So please keep in mind…
- Facial expressions can still be defined (happiness, concern, etc.) but try not to be too dramatic in your facial expressions. The complexity of dynamic facial expressions often distracts a person with ASD and may prove intimidating to your patient.
- Be aware of your tone of voice. Autistics respond best with a tone of voice which is calm, professional, and not overly fluctuating.
- Take caution on using humor or “small talk” with your patient, as this often will bring more discomfort and escalate their anxiety level. When in doubt, it’s best to avoid it altogether.
- If a patient shares information which brings you concern (i.e. your patient is sexually active and does not use protection, your patient has experienced sexual trauma, or you patient is not following all the steps for efficient prenatal care), handle it professionally. It is perfectly appropriate to address your concerns and safety recommendations based on facts (i.e. unprotected sex increases the risk of contracting STDs, STIs, and unwanted pregnancy). But avoid imposing these concerns based on your personal beliefs.
Keep your personal emotions to yourself, and the interaction between you and your patient will flow more smoothly.
6. Treat your autistic patient like you would your other patients. Treat fairly.
[pullquote]Just as your other patients have a right to be informed and make their own choices, autistic individuals also have that right.[/pullquote]The American with Disabilities Act prohibits discrimination against access to medical services on the basis of disability. So it’s important to provide your autistic patient with the same amount of access to medical care as you would your other patients. Allow your patient to fill out the same paperwork (including health history). Converse with your patient without withholding information (even if you assume it might be irrelevant). Provide your patient with the same range of choices in birth control methods. Provide them with sufficient sexuality information they may request. And most importantly, allow your patient to make their own decisions. Just as your other patients have a right to be informed and make their own choices, autistic individuals also have that right.
For additional insight on this topic, I highly recommend checking these out:
Sex & the Spectrum: Autism and Gynaecological Health by Nominatissima
Interactive site for clinicians serving women with disabilities (contains a recorded slideshow program:“Reproductive Health for Women with Disabilities”, which focuses on both physical and developmental)
Gynecologic Care of Women with Developmental Disabilities and Other Special Needs
Fellow self-advocates: please feel free to share thoughts in the comments on
what you would like OB/GYNs to know about caring for patients on the autism spectrum.
