I remember thinking when Dylan was born that having a male child might present some practical issues for a single mother. I couldn’t have guessed how significant these would turn out to be; having a disabled male child, especially one with continuing personal care needs, raises a number of challenges, one of which is public toileting.
Because of Dylan’s lack of awareness of the social rules governing public space he can’t go alone to the toilet. Dylan would be far too vulnerable; he is a sociable young man who would be likely to approach a stranger to shake their hand or squeeze them by the arm. I have seen men retreat in surprise from Dylan doing this in the street; imagine the reaction of a man approached this way in a public toilet.
As the urinal is unfamiliar to a young man brought up in a female household, in a public toilet facility Dylan always heads for a cubicle. Although this is useful in that it provides privacy, Dylan has no awareness of what is an appropriate amount of time to spend in the cubicle; I have frequently had to climb over or squeeze under bolted toilet doors to retrieve him. And, once out, Dylan always has to be prompted to wash hands. This, I think, is the result of years of extreme anxiety about hot air hand dryers. I used to dread someone using the hand dyer while we were in a cubicle and have shouted through the door at members of the public using the sink: please don’t start drying your hands just yet. Dylan copes much better with hot air dryers now, though he still washes one hand at a time with the free arm clamped across his head, covering his ears.
Members of the public are generally very understanding of the way Dylan interacts with public space but toilets are a particular space and are often the area where people can feel uncomfortable or threatened. While for the public this private space is also generally a silent space, for Dylan it is one of the places he is most vocal. Dylan has his own version of ‘singing’ which he does with gusto and at high volume, punctuated with laughter and shouting, while in the toilet. For a young man who doesn’t speak and isn’t very verbal, I find it interesting that the place he feels most free and able to vocalise is a place where many of us feel most vulnerable.
The ‘challenges’ I’m raising here are around social rules rather than personal hygiene, about which Dylan is fastidious. If someone had told me when I was struggling to get Dylan out of nappies when he was five years old, and facing some pretty challenging situations, that we would be where we are today, I would have been astonished. Many of the issues I identify here seem to involve Dylan’s sensory experience which makes me wonder whether the difficulties I experienced while Dylan was toilet training were due to sensory discomfort. Perhaps for some autistic toddlers wearing a nappy is a particularly unpleasant experience. With hindsight, if I had my time again I would approach toilet training an autistic child differently and with this in mind.
Today Dylan not only manages himself with dignity, he is gentlemanly in his consideration of me. For just as I can’t let Dylan use the male toilet alone, so I cannot leave him in the street to wait for me to use the Ladies loo; all of my toilet trips when out in the community are therefore shared experiences. For these, I have my radar key to thank; in the space and privacy of the disabled toilet Dylan turns his back to me, lowers his eyes, and covers his ears.