Sex Education and the Learning Disabled

I had assumed that sex was something I wouldn’t blog about, thinking the topic too personal to discuss in relation to someone who lacks capacity. However, my increasing frustration with the lack of resources and support aimed at autistic adults with intellectual disability has persuaded me that this is exactly the sort of issue I should be writing about. It’s a topic with significant implications for the lives of the learning disabled and my observations from personal experience will, I suspect, be relevant to others in a similar situation.

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I should clarify that I’m referring specifically to male masturbation and not to the wider sex education curriculum (such as menstruation and where babies come from). Education for adults who are diagnosed with intellectual disability should be responsive to need and masturbation is (so far) the only topic of direct relevance to Dylan.

I was a little anxious, when Dylan hit puberty, about what might lie ahead and how well I would cope, as a single mother. I had heard various second and third hand stories from parents.  One mother, I was told, was mortified to discover her son masturbating in the Food Hall of Marks and Spencer (fruit and veg aisle). Another mother reported a fondness for public transport.  As adolescence approached, I was on high alert.

In the event, this turned out to be something I didn’t need to stress about. I caught Dylan humping the sofa a few times but he quickly learned that this was something for ‘private time’. Can you go and do that in your room please, Dylan?  I tried to follow the advice to keep my voice matter-of-fact and to disapprove of the location, not the activity. It wasn’t long before Dylan was taking himself upstairs quietly (almost, it seemed, discreetly) and closing the bedroom door firmly behind him.

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Enabling an adult who lacks capacity to have privacy is not easy, particularly when there are comorbid conditions such as epilepsy.  Bathing is a context, for example, in which the safety of an adult with intellectual disabilities has to take precedence over the aspiration to provide private space for personal care routines.  Allowing an adult with an intellectual disability the privacy required for masturbation may not pose the same level of risk, but it does still raise difficulties.  Without language, someone with a disability can’t call out ‘just a minute’; at what point is it reasonable for a concerned parent/carer to open a closed door and check that the vulnerable person is alright (and not having a seizure, for example)?

After initial errors and stumbles I learned to knock softly on Dylan’s door and call Are you OK Dylan?  We developed an understanding that if Dylan responded OK I wouldn’t disturb him.  OK, in this context, is a request for privacy. If this ‘call and response’ doesn’t work, I knock again, more loudly. Can I come in Dylan?  This is Dylan’s second chance to reassure me and to ask for privacy, and he will do this either by saying No(which Dylan sometimes uses correctly in response to a direct question) or, more commonly,  OK (‘yes I’m fine, please go away’ not ‘ yes come in’). This mostly avoids any misunderstanding or awkwardness.

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It’s easy to misread a situation, however. If we make assumptions or project our own feelings onto a disabled person we are likely to get things wrong. Dylan puts up with our misunderstandings sometimes (a lot, perhaps) but he has his limits. His protests, over the last two or three years, have become more frequent and increasingly forceful to the extent that ‘challenging behaviour’ is now a fundamental part of his profile. Recently, concerned by an escalation of incidents involving ‘ripping’, I asked staff to keep a log of the behaviour, noting the time of day; location; activity; environment; and item ripped. Based on these records, It seemed to me that the ripping incidents were associated with masturbation.

It can’t be easy for adults in residential homes.  Care homes are busy places. They involve levels of support which may feel like surveillance. Even with sympathetic routines and staff, regular checks need to be made on vulnerable residents. Non-verbal adults who lack capacity may find it particularly difficult to protect their private space in such a setting. But it ought to be possible, I argued to Dylan’s care home manager, to make sensitive adjustments to care so Dylan could have the space he needs. If it was his frustration at being interrupted that was resulting in the incidents of challenging behaviour, any attempts by staff to follow schedules and routines would be counterproductive. Could the visual checks be suspended at such times?  And could the cleaner wait until Dylan gets up? 

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Such adjustments seemed to me a reasonable and sensitive way of providing Dylan with some privacy and I was optimistic this might reduce the behaviours that appeared to be linked with masturbation.  Still, it occurred to me, it might be useful to also offer some sex education. Adults with intellectual disability need support to negotiate the skills and practices of daily living, which includes masturbation. Dylan had shown no interest in a book about puberty when he was younger, but perhaps he was ready for more information now: a short film would be good, as this is the format he engages with and processes most easily. 

My first step was to request resources and support from the National Autistic Society, as this is the organisation which provides Dylan’s care. They had some material for parents and professionals but nothing aimed at autistic people themselves – or rather nothing aimed at autistic adults who have an intellectual disability. I wasn’t particularly surprised as this is often the case with the NAS; MENCAP tend to be a much better source of support. When that also drew a blank, I had to widen my search. After hours of googling YouTube clips and educational videos, however, I had found nothing suitable.  There are plenty of materials for parents and professionals, and some aimed at autistic adolescents who don’t have an intellectual disability and who can read, but nothing for young men such as Dylan.  This is yet another way in which adults with an intellectual disability are either made invisible or perceived not to have the same feelings, desires and needs as other adults.

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What is a mother to do?  Ideally nothing at all; this is one thing I would prefer not to have to take responsibility for. But in the absence of any intervention or resource from the care provider (or anyone else in the sector as far as I could tell) parental support was probably better than nothing. Too bad there wasn’t a father around, but I’d managed pretty well on my own so far and I’d sort this too. Still, my commitment wavered as I searched for appropriate resources.  Trying permutations of requests for a video brought up endless porn and dating sites. My search history made me blush. ‘Don’t be going missing now’, I told myself, alarmed at the thought of someone analysing my laptop for clues about my life.

When a search turned up an ‘anatomically accurate model’ one day, the word ‘educational’ in the description was a relief after so much of the other material. I wasn’t quite sure how it might be used to support Dylan, but ‘objects of reference’ had been helpful in the past and at £24.22 it wasn’t too expensive. As I still hadn’t been able to find an appropriate visual resource for Dylan I decided to order it. I didn’t pay much attention to the manufacturer but I wasn’t particularly surprised, when I received the confirmation email, to discover that my package would be coming from Rotterdam.  The customs fee, however, was a shock. There was no way that I was going to pay that; it would have to be left to languish at the sorting office I told myself.  So, I was surprised when my postman turned up at my backdoor with it one day; I smiled at him and crossed my fingers he wouldn’t ask what was inside. 

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I’m writing this around three months after delivery. For most of that time, the model penis has been in Dylan’s drawer. When it arrived, I showed it to Dylan in a matter-of-fact way;  he looked slightly askance at me and pushed it away. Although there has been a decline in the number of challenging incidents associated with masturbation, my sense is that any improvement in the situation is due to the adjustments to routine and environment that have been made, rather than any attempt to address the issue directly with Dylan.

We continue to search for resources on this topic; NHS Leeds, for example, have produced a useful document, Puberty & Sexuality for Children and Young People with a Learning Disability. These materials are designed, however, to be used in a classroom context with an educator, rather than accessed individually. For older adults in residential settings, an individual resource such as a short film would be a more appropriate intervention. Surely it can’t be too difficult, especially in this era of animation and AI, to produce, such a thing? I cannot believe that I am the only parent or professional who has identified this as a need. If anyone is aware of a resource which might be suitable, please let me know!

Resources:

NHS Leeds (2009) Puberty & Sexuality for Children and Young People with a Learning Disability.

Kate E. Reynolds (2014) What’s Happening to Tom? A book about puberty for boys and young men with autism and related conditions. Jessica Kingsley.

Images:

The first two images in the post are of the cover and an inside page from the book by Kate Reynolds.