When Autism Collides with Complex Female Issues
By Sue Cassel
As a new blogger to My Autism Ally, I’ll start with saying “Hello” to everyone reading! I’m honored that Susan asked me to join the blogging team. I also lead a group for autism parents/caregivers when Spectrum Sisters meets on the second Tuesday evening of each month. I’d love to tell you more about that some time!
First of all, I should tell you that my daughter on the autism spectrum said she thought I should use the title “Autism Plus Periods Equals Disaster” for this blog post, but I assured her that not every female on the spectrum has the same experiences she has had. You’ll understand later why she chose that title.
I have been an autism Mom for 21 years, though like most parents, my husband and I had no idea that autism was entering our lives when our second daughter was born! As adoptive autism parents, we live in an even smaller world, but that is a conversation for another day.
Let’s jump right into a tale of two daughters. Our older daughter, Abbey, is 22 years old, neuro-typical, married and expecting her first child in less than two months. Our younger daughter, Allison, is 21 years-old, on the autism spectrum, lives with my husband and me as her legal guardians, and will never have children, as she is preparing to have a hysterectomy.
Let’s face it. Autism spectrum disorders and periods are not always a great combination to begin with, but when periods are excessively heavy and painful, the situation can go from challenging to just plain difficult very quickly.
Conservative medical options have failed to control the very painful, heavy periods that Allison has experienced ever since she entered adolescence several years ago. Our family doctor has tried numerous hormone pills to try to control the issues, but the painful, heavy periods have continued, and the length of time between periods has remained unpredictable. When faced with the possible option of trying an IUD to deliver hormones directly her uterus, Allison could not emotionally tolerate the idea of having one implanted in her body, even under anesthesia.
The cramps have also been so difficult that meds do not relieve her pain. We tried Midol, Aleve, a combination of Advil and Tylenol with the Advil at prescription levels, and Allison still has enough pain that she has difficulty functioning through the day. We started seriously considering more permanent treatment options when she started saying things like, “Mom, I just can’t live with this pain anymore. Can’t somebody help me with it?” Her periods have also been heavy enough that we’ve had to be concerned about pad leakage in public and other embarrassing personal concerns. At times, Allison’s periods have been so heavy that she became anemic and had to take iron pills. So she isn’t having the typical issues that females all go through. She has extreme difficulties that affect her energy levels and daily functioning. I asked Allison how she feels about the possibility of having these difficulties removed from her life, and she said, “It will be amazing!” In talking with her further, she said that she looks forward to a time when she doesn’t have to completely put her life on hold with every period.
Our family doctor recently referred Allison to a gynecologist, and our first visit with this doctor went very poorly. Having never met Allison before, and obviously having little experience with patients on the autism spectrum, the doctor openly questioned just how “autistic” Allison is, and proceeded to talk to her just like she would any other 21 year-old. This mistake on the part of the doctor ended in Allison having a loud, tearful meltdown right there in the office ... at which point I wanted to rub it in the doctor’s face, but I refrained from doing so. Lesson learned by the doctor. The doctor did at least respect our choice to refrain from having Allison undergo a pelvic exam and did not push the issue.
After the appointment, I messaged the gynecologist and sent her some tips on how to properly interact with Allison. We decided to give this doctor one more chance, because of the high praise we had heard about her. This doctor is even going to deliver my grandson in a couple of months. Abbey loves her. Our family doctor loves her. So we gave her another try with Allison.
The second appointment with Allison and the gynecologist was much better than the first! This doctor had actually read Allison’s entire medical record and was ready to discuss plausible options for her troublesome periods. She and Allison exchanged jokes and were good friends by the time we were done chatting. I should probably also mention that during these days of COVID-19, I am allowed into Allison’s medical appointments with her because I am her legal guardian, and we have the paperwork if we need to prove it.
Perhaps this is a good time to say that I believe that ladies on the autism spectrum should have the same reproductive rights as anyone else. Nothing is being taken from Allison without her informed consent, and her hysterectomy is a procedure of medical necessity to improve her quality of life. Allison expresses that she has no desire to marry or have children, and she understands that the decision to have the hysterectomy cannot be reversed after the surgery is done.
We have had people ask if we had to go to court to get an order to allow Allison to have a hysterectomy. We actually did not. Because Allison, all of her doctors, her case manager, and we as her legal guardians, all agreed that hysterectomy was the best option for her, we did not need to go to court. The only legal issue was that Allison and I both had to sign a form for Medicaid saying that we are fully informed that Allison is having a hysterectomy and will not be able to become pregnant after the surgery. We signed the form at the gynecologist’s office.
The question was also raised by a relative about why we did not pursue an ablation before a hysterectomy. The gynecologist told us that an ablation will last only so long before the body will try to rebuild the uterine lining. When this happens, and it is inevitable, the only option left is hysterectomy. So the doctor felt that we could bypass ablation and go straight to hysterectomy, due to Allison’s young age and the likelihood of ablation failing. Since she is young and hysterectomy appears to be inevitable, (and the doctor now seems to have a clearer understanding of Allison’s anxiety issues), no one wanted to put her through having to wait for an ablation to fail.
For right now, we are in a short waiting mode. Allison’s surgery is scheduled a month from now. The greatest part of her recovery is expected to take two weeks. And Allison’s sister, Abbey, is due to give birth the week after that. Nothing like cutting it close!
Please check back in a few months for updates on Allison’s surgery and how she’s adjusting to being an aunt for the first time!