6 Things an OB/GYN Needs to Know When Taking Care of a Patient with ASD

Do any of us really enjoy visiting a gynecologist?

Without a doubt, visits to an OB/GYN (obstetrics and gynecology) specialist are among the most stressful health care procedures, and it especially applies for people on the autism spectrum.  For many individuals, the idea of invasion and touch (even when permitted) can cause a sensory overload and may even lead to anxiety attacks and meltdowns.  And because the OB/GYN office environment is not often “ASD-friendly”, these individuals may avoid them altogether.

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).

Recently, Nominatissima (a fellow autistic adult and self-advocate) published a post in her Sex and the Spectrum series on the particular issue regarding autism and gynaecology (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 knowlegable about the sexuality component in people with developmental disabilities.

Do not assume right away that your patient does not want information on sexuality.  A study conducted by Beckmann and Barzansky in 1989 concluded that many women with disabilities wanted information on sexuality, but very few were actually asked.  Less than 20% of those OB/GYNs offered sexuality counseling to their patients, and only 1 in 5 women sampled felt their doctor understood their sexual needs.

If a patient expresses desire to become sexually active or become pregnant, it is important you respond to their desires with respect and dignity.

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 with ASD 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 desire to become pregnant and go though 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 ASDs and developmental disabilities require accommodations, too.  So the concept of having to make accommodations for patients with ASD might be new to an OB/GYN, since an OB/GYN do not typically cover disability and sexuality in their licencing 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 ASD-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

People with autism tend to handle experiences… even unpleasant experiences… a lot easier when they know in advance what that experience will be like.

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 with ASD 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.  People with ASD 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 with alerting patients the steps of a procedure they may be performing.  It’s especially crucial you communicate with your ASD patient every step you are about to take in a given exam.  An example you may give to a female 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).

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  1. Laura
    Posted September 26, 2011 at 8:23 PM | Permalink

    Seeing the OBGYN is my biggest concern for when I start having sex. I have bookmarked this post to show to my doctor when this happens. The only comment I have is in regard to the weighted blankets – I have an aversion to specifically weighted accessories due to a negative experience with weighted vests during childhood OT sessions, and would prefer simply having a heavy quilt around, or bringing my own sweatshirt like I do to movie theaters, on the rare occasion I go.

  2. katie
    Posted September 26, 2011 at 9:21 PM | Permalink

    God, the small talk. That’s the absolute worst part. Like I want to talk about my school or my job or my last fucking vacation while you’re sticking things up me. Small talk is bad enough in everyday life but at the dentist, or getting your blood drawn or getting a pelvic exam is the absolute worst time! I’m trying to go off in my own little world and you keep dragging me back here to tell you about any movies I’ve seem lately? But typically I feel to vulnerable to say “I don’t like small talk” while she’s doing it, and I always forget before hand.

  3. Posted September 27, 2011 at 12:27 AM | Permalink

    This needs to go out to every gynecology practice & should be required reading for all aspiring gynecologists.

  4. Posted February 27, 2015 at 8:06 AM | Permalink

    I really like your tip on establishing a safe word between the doctor and the patient. This way I know that whatever happens, I’m in control, and I will feel a lot more comfortable and safe. I’ll have to talk to my doctor and see if we can establish a safe word together.

  5. Liz
    Posted January 14, 2016 at 1:35 PM | Permalink

    Right before I went under to have an abnormal growth removed from my uterus I was clarifying what I would eat afterwards (I have dietary restrictions and cannot eat hospital food) and the surgeon patted me on the leg and said to not worry, just trust her and the other people, they know what they are doing. My anxiety went through the roof. I want reasoning and communication, this is not faith healing.
    Last year I had a surgery done on my hand in Costa Rica. The medical system is totally different there. At every step they explained everything with total bluntness, including risks. When we schedule the surgery, the surgeon said while showing me on his hand, “I will cut from here to here and detach two ligaments and a vein, remove the tumor, then sew it back up. You will have a nerve block put in your arm here that will totally numb your arm for 24 hours. My fee is $2,000 and the hospital will charge you around $1,000, 20% of these come back.” I totally relaxed and was so much happier. Getting information in detail out of medical people here is like pulling teeth. When I talked to the anesthesiologist he told me he wanted to give me a benzo to help me relax, I asked if I could have something else, and he said, “Of course, whatever you want and no sedative is fine.” Because I have trouble being still we settled on low dose propofol and I was totally aware, but still. I can’t even imagine being treated like that here. Stimming is not a good thing during hand surgery.
    I have no intention of getting medical care in the US again if I can avoid it, I would rather hop on a plane. The Gynecologist visit was like he had just read your essay. As soon as I told him that the more I know the more I relax, he gave me every detail ahead of time. The office was quiet and calm. This was private care paid for with cash and with my high deductible my out of pocket was lower than getting care here.

    I feel like medical care in the USA is oriented toward a totally different kind of person. It treated like religion and any questioning is discouraged.

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