Barriers to Relationships, Part 4

This is a forth (and final!) post in a series of four posts on barriers to relationships. Check out Part 1, Part 2, and Part 3. This series has been focusing on difficulties forming and maintaining romantic relationships imposed on autistic people not because of their autism, but rather because of abuse, financial policy, transportation, and other support services.

This article talks about sex and similar topics.  Personally, I don’t see any stigma with using the word masturbate or intercourse or whatever else.  Sex isn’t dirty.  It’s something most of the population does or wants to do (yes, I know there are completely asexual people too, and that’s fine too – that doesn’t make sex dirty though).  I also mix talking about sex and marriage below, but what I say applies to other aspects of romantic relationships.  It just so happens that these are the areas of biggest hangups in the eyes of non-disabled people when discussing romance and people with disabilities.

Autistic people are plenty capable of having real romantic relationships. Yet, this is the heart of the most significant barrier that autistics (and, indeed, pretty much all disabled people) face in forming relationships.

So I’ll say it again. Autistic people can form romantic relationships!

My wife and I, both of us autistic, married each other in 2009, after dating and being engaged for a bit more than a year.  After three years of marriage, I can say that I know a little about autistic romance and relationships, even if I only still know a little bit.  But that makes me a bit more knowledgable than many.  I’ve actually lived it.  Strangely, I’ve lived something that generally isn’t studied or talked about: a successful, two-autistic relationship.

There are a lot of reasons for this, but a good chunk of it is the idea that autistic people (and, indeed, people with disabilities in general) are not sexual.  Yet studies dispute that. For instance, in a 1997 study on sexual behavior of autistic adults, “Sexual Behavior in Adults with Autism” by Mary E. Van Bourgondiera, Nancy C. Reichle, and Anm Palmer, around 68% of the subjects were thought to masturbate.  Interestingly, that number came not from direct observation (uh, yes, there would be some ethical concerns there) or interviews with the subjects.  The subjects were ICF (intermediate care facility) or group home residents with dual diagnoses of Autism and Mental Retardation, and most (90%) were considered legally incompetent and were under guardianship.  A significant number (1/3) were non-verbal.  The subjects’ caregivers (staff) were asked to complete a survey that asked about their residents’ sexual behavior.  Interestingly, most staff indicated that this masturbation occurred in private spaces of bedrooms and bathrooms – places the residents clearly used for privacy reasons – and that further the staff was not only able to observe whether or not the person was “aroused” during such activity, but also whether they typically achieved orgasm.  Personally, if I walked in on someone masturbating, I don’t think I’d stick around to find out if they have an orgasm, so some of these results are disturbing to me.

That said, it’s clear even non-verbal people were sexual beings.  Further, significant numbers of people, including people who would often be judged as the “most disabled” (remember, almost all these people are considered legally incompetent, but I’m talking the people that others would consider even more disabled of this group), were known to be aroused by interactions with others – so it wasn’t just masturbation.  I would add that this didn’t change when “degree of autism” was taken into account.

The study didn’t find a lot of actual intercourse, but that’s sort of expected – most of the homes and ICFs surveyed by the study authors didn’t feel comfortable sharing their sexual policies, and intercourse among residents would certainly be a taboo subject.  Only 14 homes/ICFs responded to the questions about their sexual policies, and of those 14, only 2 permitted intercourse between residents.  Clearly that behavior was expected to be stopped in the majority of cases when observed by staff, so of course staff didn’t report much of it (but apparently a staff person knowing how often someone had an orgasm was acceptable).

Interestingly, the sexual policies examined in this 1997 study indicated that heterosexual activity was preferred over homosexual activity.  2 of 14 facilities allowed heterosexual intercourse, while only 1 of 14 allowed homosexual intercourse.  Likewise, acts such as “hugging” (I really couldn’t make this up) were allowed between opposite-sex residents in 8 out of 14 facilities, while this was allowed between same-sex residents only 6 out of 14 facilities.  Further kissing was allowed between opposite-sex residents in 8 out of 14 facilities, but between same-sex residents in only 2 out of 14 facilities.

So, clearly, at least some of us aren’t supposed to have sex.

In some cases, the desire to keep us from sexual activity can be extreme.  This article on parenting kids with autism talks about inappropriate sexual behavior.  In a disturbing sidebar about too-frequent masturbation, with a title of Alert, readers were advised: “Some medications used for autism, notably SSRIs (Selective Serotonin Reuptake Inhibitor), slow the libido and may be appropriate.”  I couldn’t believe I read that, and had to read it a few times.  No, SSRIs are not appropriate for that, particularly given to children without the child’s consent.  Not only that, but it does not appear likely that such medications would actually achieve the desired aim (see the first study for discussion in the study about lack of relationship between psychotropic medication and masturbation in most cases, and the very disturbing next study I’ll discuss – and also that the first study indicated that inappropriate masturbation was reduced in subjects that had sexual education, even when talking about subjects judged incompetent; go figure).

SSRIs are apparently just the start of the methods some people will employ.  In Treatment of Hypersexual Behavior with Oral Estrogen in an Autistic Male, a 2008 case study involving an autistic man who apparently masturbated inappropriately in response to seeing opposite-sex people (although the article never says he actually did so outside of a private space – so it’s hard to know exactly why it was considered inappropriate).  He apparently had elevated testosterone (again, no information about the tests that determined this, or the actual measurements of his testosterone).  From the article:

The patient was referred for psychiatric follow up and placed on oral medroxyprogesterone. The hypersexual behavior showed no improvement over a period of two months and the patient was subsequently administered intramuscular medroxyprogesterone. Due to the combative nature of the patient, restraint was difficult, even following premedication with lorazepam, making chronic therapy by injection undesirable and impractical. In an effort to decrease the frequency of the hypersexual behavior, the patient was placed on transdermal estrogen therapy; however, he consistently removed the patch. He was then prescribed oral estrogen 0.625 mg daily, resulting in a significant reduction in hypersexual behavior after two months of therapy.

I’d probably fight you too if you did this to me (and I wonder, if the masturbation was done in an inappropriate space, if that itself was a form of protest against his treatment). It should also be noted, from the prescribing information for one form of oral estrogen, Estrace, that .625 mg is rather significant for a male:

For treatment of moderate to severe vasomotor symptoms, vulval and vaginal atrophy associated with the menopause, the lowest dose and regimen that will control symptoms should be chosen and medication should be discontinued as promptly as possible.

Attempts to discontinue or taper medication should be made at 3-month to 6-month intervals. The usual initial dosage range is 1 to 2 mg daily of estradiol adjusted as necessary to control presenting symptoms. The minimal effective dose for maintenance therapy should be determined by titration. Administration should be cyclic (e.g., 3 weeks on and 1 week off).

There is also a black box warning on estrogen, never mind that this warning is mainly targeted at women – who I suspect are more tolerant of oral estrogen.   Giving it to a horny 23 year old is definitely not it’s intended use.

The case study ended with this ethical tidbit:

Until more studies on hypersexuality are conducted in the autistic population, physicians must continue to experiment with available options in order to find a medication that is beneficial to the patient.

NO.  Until more studies are conducted, physicians should first do no harm.  We (society) can’t legally force a convicted serial rapist to take drugs to reduce libido, particularly if such drugs have significant side effects (as estrogen in a man will have).  There’s good reason for that (among others, they don’t prevent the rapist from continuing to sexually offend!).  It’s sad that it doesn’t apparently apply to autistic adults.

(Particularly ironic in this particular study was the quote put in, I’m assuming, by the journal in the PDF version on the last page of the article: “The biggest disease today is not leprosy or tuberculosis, but rather the feeling of being unwanted” – Mother Theresa; I’m sure being forced with chemical and physical restraint to take hormones makes you feel really wanted…not)

Even those of us who aren’t being chemically sedated with Lorazepam and force-fed pills, and who don’t live in ICFs or group homes, face a lot of prejudice and stigma when it comes to our romantic lives.  What autistic adult hasn’t heard someone talking about their child and saying, “he’ll never get married,” as the parent expresses grief over their chid’s plight (never mind that plenty of people are happy if not married).  It’s just assumed we won’t get married.  We’re not sexual, and we’re not able to commit or love.  Or so goes the assumption.

Whole organizations exist to sympathize with the plight of our neurotypical spouses, who apparently were hoodwinked by us or something.  After all, we don’t have any redeeming features as a spouse.  We’re not sexy.  We’re not desirable.  We’re not lovable.

But that isn’t the full story.  I’m not even sure it’s a partial story.  We do have successful marriages.  In some cases, our marriages are better than most.  In some, they are worse.  That’s pretty much true for any possible demographic you look at – not just autistic people in marriages.  And, in a lot of cases, the challenges we face are exasperated by difficulties we have – as I’ve mentioned before, abuse, money, and support can all add stress depending on their presence or lack in our lives.  But much of the root of this is that we’re not seriously seen by the rest of the world as romantic partners (not just we’re not seen as people they would desire as romantic partners, but rather we’re not seen as anyone’s romantic partner in their eyes).

Since this post is already rather long, I’ll link to someone else that explains this part of things way better than I could: Interview: Sex and Disability.

What can society do?  It’s fairly simple and obvious, I think:

  • It’s okay to teach us about sex.  Really.  Not only is it okay, but it’s good.  We might need to learn the mechanics of sex or masturbation, what constitutes abuse, how to please your desired partner, what people think is appropriate and not (but not a fixed, rigid rule – rather information for us to make good decisions), how to ask a girl out or any number of other things that people don’t like talking about.  But if you don’t pick up social cues and have a small social circle, these things can’t be assumed to just happen naturally.  Sex ed for disabled people needs to be a bit more than a hygiene and don’t-masturbate-in-public class.
  • It’s critical we know about how to spot abuse when it happens to us.  Equally, it’s critical we have ways to report that abuse that don’t require our abuser to be present.
  • My relationship might not look like your relationship.  The ICF resident’s relationship might not look like mine.  That’s okay.  It should be celebrated.
  • We need the things we need to live (money, support staff, transportation, etc) even if we have a romantic relationship.  Don’t cut us off for seeking love.
  • We’re sexual beings.  Even non-verbal people.  Even people with a diagnosis of mental retardation.  Even people with “classical autism”.  We’re also social.  Even if you think we’re not.
  • We need opportunities to build relationships (non-romantic ones, at least initially!) with people who might be desirable to us.  And it shouldn’t just be non-disabled people or just disabled people.
  • We need people we can trust to give us good feedback when we feel it is helpful.  We need a wingman (someone to help us spend time with a person we’re interested in and someone to give us good objective feedback, like “Dude, she’s not into you.  Leave her alone!”).
  • We need life skills training that includes things like marriage.  Can anyone point me to a pre-marriage counseling curriculum that is geared towards disabled people, particularly autistics?  I doubt it.  Yet this is considered important for many neurotypicals.  Why wouldn’t it be important for us?

I want to close by acknowledging that there are a lot of people who want someone in their life, but are very lonely.  Let me just say:   🙁   I do think there is hope in your future though – try to stick with it.  I know people that took 50 or more years to find someone.  It’s still possible.  I’m so glad my wife and I didn’t do anything rash before we finally met, even as hopeless as times as things were in our past.  I also know others will have non-sexual romantic relationships by choice, which is great.  As is someone who never has a romantic relationship by choice.  You don’t have to live your life the way I live mine – we’d all be miserable if we tried to live someone else’s life.  There’s joy in living your own life.

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