He’s Not My Toy Boy: mothers and autistic sons

Inverness 2014 084How long did it take you to learn how to communicate with him? the man asked me. I was a bit stumped: I thought the answer obvious. Perhaps he wanted something more philosophic from me, I reflected. Nonetheless I opted for the simple answer: Well I’m still learning, but all his life I suppose. I could tell I hadn’t answered the question satisfactorily. I watched the man purse his lips; he was thinking about how he could rephrase it so I would understand. I took a sip of my tea and waited. Then I saw a quiet panic in his eyes; he coughed and looked away, took another bite of his scone.

We were staying at the same hotel on a short break holiday so the man had been observing Dylan and I for perhaps 48 hours when, finding ourselves seated at the same table, he had asked his question. Afterwards I pondered it; I could sense there had been a misunderstanding but couldn’t put my finger on quite what. Dylan and I had become friendly with a couple staying at the hotel so, still puzzling over the incident, I decided to share it with Hazel. She looked at me with shrewd eyes, wrinkled her nose and said, matter-of-fact: he probably thinks you’re a couple. My jaw must have dropped. Hazel cracked a grin. Don’t worry, she said: he was probably picking up on your closeness that’s all.

The next time Dylan and I found ourselves seated with the man we made small talk for a while before he cleared his throat and ventured: I have an apology to make. I thought you were Dylan’s sister. That’s why I asked that question the other day. I didn’t realise you were his mum. You don’t look old enough if you don’t mind me saying and so I thought you must be his sister you see that’s all. I could tell his error had been bothering him and he needed reassurance from me that it was OK. But I could see through his story; a sister would also have been learning for a lifetime. I realised, however, that he must have spent time thinking up a plausible explanation for his question which didn’t involve casting me as Mrs Robinson. I thanked him for the compliment and let it drop.

*

Inverness 2014 114Later that weekend I was guiding Dylan across a road in the town when I noticed a woman crossing in the opposite direction give us a filthy look – or, rather, give me a filthy look. I am quite used to members of the public staring at Dylan; usually once they have made sense of the disparity between his appearance and behaviour their attention is warm and positive. Occasionally we encounter somebody unpleasant and then I have to consider whether and how to challenge them (sometimes they get away with it because of the distress such a challenge would cause Dylan). On this occasion, however, it was definitely me not Dylan who was the object of scorn.

Although I didn’t understand why I was a target for it, I recognised the look which the woman on the pedestrian crossing gave me. Her gaze was, I knew, about sexual identity and behaviour. I am used to being judged by other women and think of this as part of the experience of being female. Such surveillance has been well-documented; in my own field of education, research accounts of the ways in which girls ‘police’ girls have significantly enhanced our understanding of their experience of schooling. So while the woman’s behaviour wasn’t unfamiliar to me, it did strike me as odd given my age and the fact I was performing my mother/carer role.

Inverness 2014 118Nonetheless I reacted instinctively: I checked my outfit for errors and accidents. Nothing that I could fathom. As I continued down the street I watched myself passing in shop windows. I couldn’t see anything amiss. I was wearing Doc Marten’s with a simple cotton dress and raincoat. Perhaps my beret was a little jaunty but really, I thought to myself, the idea that she would see me as a sexual threat, predator or outcast was ridiculous. I couldn’t find an explanation for the look the woman had given me but it rankled and left me feeling anxious.

Only after we’d returned home did I realise what had happened that day. She thought Dylan was your Toy Boy, my osteopath said when I mentioned it to her.  I think I had known this but not let myself admit it, it seemed so preposterous. Maybe that’s why I shared the incident with her, apropos of nothing; I wanted to check out my hunch with someone whose judgement I trusted. Once I had been given permission to admit the reason, I remembered all the other people who, from the looks I had received, had had exactly the same thought.

*

Inverness 2014 156Since these incidents I have been reflecting on why members of the public might mistake my relationship with Dylan. Clearly it is an error which can only happen once a child has reached a certain age and as Dylan has recently become an adult this is new territory for me. I’m not sure whether it is an issue facing carers more generally; it’s not something I’ve heard mentioned by any I must admit. It occurs to me, however, that the error probably requires a particular set of factors to be in alignment.

Although mistaking a parent-child relationship can happen only during adult years there is probably a fairly small window for the error. The mistake, I suspect, is based on Dylan being at his physical prime and me being just beyond child-bearing years; assumptions are made by society about what is considered appropriate sexual behaviour for both those categories (non-disabled people in cross-generation relationships will be familiar with those). I am guessing that the public might not mistake Dylan’s carer as his partner when he is middle aged, and his carers are significantly younger than he is, or when I am significantly older than I am now.

As well as being age-related the erroneous assumption is probably fuelled by a parent supporting the child alone and by parent and child not being same sex. There has to be something more than this though doesn’t there? Lots of mid-years mothers and fathers walk down the street with their adolescent sons and daughters without the world assuming them toy boys, sugar daddies and cradle snatchers. The difference, then, must hinge on behaviour as well as appearance.

*

Because Dylan is vulnerable in the community I need to support him physically when we are out and about. Dylan lacks road sense so must be guided across roads and supported while waiting to cross. Because walking through public space is difficult for him, Dylan seeks physical reassurance from carers for comfort as well as guidance. When Dylan was younger I would hold his hand. Recently I have encouraged Dylan to link arms instead as this feels more adult and avoids the childlike or romantic associations of hand-holding. Dylan still sometimes reaches for my hand, however, when we are out walking and likes to link arms even away from traffic.

Dylan not only enjoys this physical contact but he uses it for purposes of communication. He squeezes my palm in different ways, for example, to initiate ‘conversation’, to ask if everything is alright or to say ‘hurry up’ or ‘I don’t like this’. He also taps me to communicate (you can read more about this here) and uses a variety of paradiddles, hugs and arm bends. While I have to be careful of Dylan’s physical strength, particularly when he is distressed, his use of touch to express feelings is a rich and valuable part of our relationship. It is this physical closeness, I suspect, which an unsuspecting member of the public could misread.

*

Dylan and I were once misread by a member of the public in a way which seemed inconceivable. One day, when Dylan was 15 or 16, we caught the eye of a senior citizen walking slowly, on two sticks, along the road where we live. Dylan and I were skipping hand-in-hand through a private alley which leads to the road (Dylan loves to skip so we do this sometimes in quiet places). As we approached, the woman lifted her eyes from the pavement, stared at us as if puzzled, then declared: Twins!

There are 33 years between Dylan and myself. As well as being a different sex, our eye and hair colour are different. If being mistaken for Dylan’s partner or sister is preposterous, being called his twin challenges identity at a whole new level. At the time I dismissed the incident as an aberration of judgement due to the woman’s age. I realised afterwards, however, that this was patronising; she had clearly seen something to cause her to think us twins. People have sometimes commented to me that although superficially Dylan and I look physically different, the link between us is clear if you look more deeply. The elderly woman had, I told myself, seen beyond the obvious; it was this, combined with our childlike behaviour in the alley, which had confused her.

Recently I have been working on a manuscript of love poems. While many writers have assembled such collections (including the poet whose name I share) my focus has been slightly different in that the poems are concerned with non-sexual love. What I wanted to explore, through these poems, was the nature of intimacy: as well as poems about a mother and child there are pieces about relationships between friends, colleagues, and a trapeze girl and her catcher. A couple of the poems concern the particular intimacy which being the carer of an adult child involves; perhaps this is what the woman in the street detected when she imagined us twins.

*

The incidents recounted here illustrate three mistaken reactions to the same relationship, each with different emotional impact and implications. While acts of public condemnation, such as filthy looks in the street, are hard to receive and difficult to counteract, the meeting with the man in the hotel offered an opportunity to gently challenge expectations. The elderly woman’s mistake may, at first glance, seem the most significant but in perceiving physical contact as denoting intimacy rather than sex she was pointing a wise finger.

What the incidents also illustrate, perhaps, is how constrained a part of British culture touch is. Physical contact in public is assumed to indicate childhood or sexual love; we accept hand-holding between parents and children but in adulthood touch is something which is reserved for lovers. Carers and disabled people challenge attitudes and assumptions every time we access the community; sometimes change is light and easy but at other times it needs a sledgehammer. If I were the sort of person who wore slogan T-Shirts I would have one made for the women on pedestrian crossings : He’s Not My Toy Boy, He’s My Son.

 

Images:

The first four photographs were taken by Hazel and others (apart from the selfie through a mirror) during the holiday referred to in this post. They were taken on the Isle of Skye, in Aviemore and at the Botanical Gardens in Inverness. The photographs of Dylan and I holding hands when he was younger were also taken on Skye (by my daughter in 2009). The final photograph was taken by my daughter in Ventnor on the Isle of Wight in 2009.