In my 25 years of raising a daughter on the autistic spectrum, I’ve NEVER read a more horrifying statement than this one: “Pediatricians are urged to be prepared to discuss menstrual management options like birth control as well as surgical options like hysterectomy.” (My italics.) Who in their right mind, in 2016, could casually suggest that a hysterectomy is a “menstrual management option” for girls with disabilities? I thought Dr. Mengele had been dead for decades.
Believe it or not, Disability Scoop published that sentence, offering the hysterectomy solution, in an article called “Doctors Urged to Address Needs of Females with Disabilities” only last week!” Even worse, Shaun Heasley, author of the article, is one of the two FOUNDERS of Disability Scoop. Better minds than mine must figure out why Michelle Diament, the female co-founder—who has an adult sibling with autism, could permit publication of such an outrageously immoral idea. What kind of ethical code can include hysterectomy as part of ANY discussion of menstruation and contraception for pubescent girls? If my pediatrician had suggested the alternative of a hysterectomy for my thirteen year old daughter, I’d have left with her in outrage and never returned. Far better that contraception wasn’t even mentioned, although normally I advocate appropriate sex education for students on the spectrum.
I agree that pediatricians in the 21st century should be “encouraged to take a more active role in helping families prepare for and adapt to the changes that come with puberty for girls with disabilities.” I would have found it very helpful if—for example—Samantha’s pediatrician had provided a simple and autism-friendly illustrated book or pamphlet, explaining how the female anatomy changes as girls become women. A short video or three dimensional model showing internal female genitalia could be used as a starting point for the discussion. Insertion of tampons could be easily introduced in this manner, and give moms a helpful head start teaching their disabled daughters a crucial life skill. As educators and autism families know, hands-on, visual experiences are best for teaching children with disabilities.
Facing the challenges of contraception and STDS, most pediatricians should probably refer female patients and their families to gynecologists, ideally gynecologists with special training to deal with young adults on the spectrum. I strongly believe that young women with autism (or other cognitive impairments) should be offered the same options as their neurotypical peers: condoms, IUDs, birth control pills, patches, injections, etc. Wouldn’t any other approach be an example of misogyny and discrimination? (Not to mention a civil and human rights issue.) An autism-knowledgeable gynecologist could guide parent and child by showing a short video that points to a print or sculpted model of female organs when discussing self-care options. Given the fact that most orthopedists display pictures of musculature, podiatrists proudly put up posters of feet, and ophthalmologists show eye diagrams, why NOT have visual displays of female genitalia available for gynecologists’ young patients with (and without!) disabilities?
As for the subject of hysterectomy, it should NEVER be mentioned in front of an ASD girl or her parents as a contraceptive option. Would any doctor dare suggest to a male adolescent or his parents that their son should undergo castration or a vasectomy as a birth control method? Have we reached the point (of insanity and lack of compassion) where articles are published suggesting doctors offer surgery (the amputation of female inner organs) to avoid the uncomfortable subject of sex, instead of investing the effort, creativity and patience required to help ALL human beings lead healthy, meaningful lives? In fact, performing a hysterectomy on a healthy, teenage girl with disabilities should be considered a criminal assault on her health. That young woman would suffer instant menopause, loss of hormones necessary for bone growth and density, early osteoporosis and, in all likelihood, a shortened life span.
As far as I know, today’s pediatricians are still unable to predict whether individual teenage girls on the spectrum will grow up to be responsible adults who can enjoy sex without an unwanted pregnancy, or even whether such girls might one day mature enough to become competent mothers. In the absence of this essential knowledge (or a crystal ball) pediatricians should NOT be discussing—either among themselves or with autism families—such a radical and unethical surgical solution to birth control, which actually rises to the level of cruel and unusual punishment, banned by the eighth amendment of the US constitution.
Disability Scoop should know better than to publish an article which includes a birth control option as cruel and offensive as the removal of female inner organs. Sexual amputation is not a viable birth control choice for any female young enough to be seeing a pediatrician!! The Disability Scoop article concludes that “the pediatrics group warns that all of these considerations should be weighed in the context of legal and ethical obligations, particularly in cases where patients have intellectual disabilities and may not be able to give consent,” but such a mild caveat just adds insult to injury. Doctors AND disability publications should heed the all-important Hippocratic Oath: First, do no harm.