Autism and the Gynecologist

It took me weeks to get up the courage to make an appointment with a doctor’s office that I had no prior history with.  Alanna turned 26, and with that she no longer has any private insurance through her parents. We had to find a doctor that accepted her insurance. I pleaded with my own OB/GYN’s office to let me pay cash, just to not have to endure the barrage of questions, the new setting, and the possibility that the staff won’t understand.

It was not a possibility, it was a fact. There was little history taken other than name, address, and the basics. No spot to put down any other conditions, you know, like autism. The wait was short, the nurse came in, took her blood pressure, weighed her, and told her to strip down and put on the usual gown and paper lap cover.

When the Nurse Practitioner (NP) arrived, she was taken aback by the number of people in the room. Alanna, myself, and Alanna’s caretaker.Certainly more than the average, but should there had been any questions, Alanna would need us to provide the answers.

I immediately introduced everyone. She approached Alanna and asked, “why are you here?” I explained in my low voice (you know that one where you try to tell someone something, without being disrespectful to Alanna), she will not be able to answer your questions. “That’s okay,” she stated bluntly. Yet she proceeded to ask Alanna more questions, and “yes” was the answer to all of them. I explained that she answers yes to everything. “That’s okay.” She continued, “do your breasts hurt,” “yes,” “does your throat hurt,” “yes.”  I tried my best to be calm and explain that she will have to examine Alanna, and if she sees her wince, that would be an indication of pain, but Alanna will only respond “yes,” to any questions.

Alanna laid down on the table and the NP examined her breasts.  Then asked me, “You want me to do an internal?”  “Yes, I do.” “Is she sexually active?” “No, I hope not, but I want her checked out.” “Isn’t she supervised at all times?” “Yes, as much as we possibly can, but the research will tell us that it doesn’t take long for abuse.” She agreed that girls with disabilities are highly likely to be abused, but didn’t think an internal was necessary. “I’ll try, but if she grimaces or moves, I’m going to stop,” she told me. Really, have none of us grimaced or moved when the specula was inserted.

I’m not sure of the exact recommendation, but have’t many of us gone to the GYN for regular checkups following menstruation?  Isn’t this part of a yearly check-up?  Does something have to be wrong?

Alanna struggled to follow the direction to move to the end of the table.  I explained she can’t follow that direction, I will help her. As I lifted her mid-section and moved her down, I asked, “is that enough.” “No,” with no further instruction.  I tried more, “how about now?”  “No.” So I moved her more, all the while thinking, I should just leave.

The NP told me to stop I was going to hurt my back. How about you just tell me when I’m there so I don’t have to keep moving her inch by inch? Is what I was thinking, but didn’t say out loud.  The fear that you may insult someone who is about to look inside your daughter’s vagina, keeps your mouth shut. I got her to the edge. The specula inserted, and the NP says, “I’m having a hard time seeing her cervix.” “Do you want me to move her more?” No response.

She said she got the pap smear completed and that we should get the answer in two weeks. She then asked if we wanted birth control for preventative reasons, in case something does happen to her.  She then explained that Alanna doesn’t have to come back for 3 years.

What other 26-year-old woman gets that advice? Do you want birth control in case your raped, and no need to return for 3 years? How do we ensure the health of our women with ASD if no one thinks it’s important? Between 39% to 68% of girls with developmental disabilities will be sexually assaulted before the age of 18 according to a study by Mahoney & Poling (2011).  There are many studies with different numbers, some higher, some lower, but not a single study that focuses on sexual abuse for those with disabilities will state that the numbers are the same as they are for the typical population. Is it 3 times more likely, or 80% higher than the average?  WHAT’S THE DIFFERENCE, it happens at alarming rates, or rates that should be alarming.

But apparently not alarming enough to the NP that examined my daughter today. NOT once did she ask, was I concerned something has happened? Is that why I’m there?

I have traveled nationally to discuss the challenges of those more profoundly affected by their ASD and sexuality.  How to stay safe, how to engage in appropriate self-satisfaction, skills needed to understand relationships and/or to stay out of jail. I preach that parents must take their children for examinations to ensure they have healthy reproductive organs. And if needed, so they can talk to a professional that might help to guide them in topics they are too nervous to discuss with their children.  Billy and I understand the likelihood that Alanna may be abused is high and we do all that we can to protect her.  Statistics tells us that the perpetrator would probably be someone she knows.  I take her to the doctor so she can be examined as part of protecting her.

How would I know if my daughter was abused unless someone examines her? How would I know if she has an STD, or a cyst, or any medical condition unless someone examines her?  Alanna never complains of pain, once she does it may be too late. Alanna can’t tell me if someone has hurt her, or coerced her.  What I asked was to have my 26-year-old daughter to be examined and treated like any other 26-year-old woman. That this examination be treated as though it was important, that Alanna was somebody who deserved to be examined, that her body was as valuable as the next person that laid on that table, able to scoot themselves to the edge.

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