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.Β  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.

13 thoughts on “He’s Not My Toy Boy: mothers and autistic sons

  1. This is a lovely piece of writing. I found it very moving. It has much to say about love, as well as other concerns. The photographs are gorgeous. My mother, who has Alzheimer’s, might easily have been the lady between two sticks who said ‘twins’, while searching for a word to describe the mirrored action. So she might not have meant exactly twins. Or it may be exactly as you say.

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    • Thank you Nell. I did wonder about Alzheimer’s at the time; I like the idea that seeing us triggered a search for a word and that ‘twins’ was the one she found. I often think the carriers of wisdom are those like Dylan and the woman on two sticks πŸ™‚

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  2. Perhaps the woman on sticks just was able to see beyond the skin on the outside. I would say that the reaction in the US might have been the same. Once kids leave home as young adults they probably become less willing to walk down (or skip) a street with their mom, holding her hand. Moms are probably less willing to skip. Your essay pointed to the things we give up thinking society expects us to grow up, and made me wonder why I would want to conform my behavior to people who do not know my heart. Why do I care what “they ” think?

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  3. Very interesting the point you address in this post. I like all of your posts, agreeing with some points, disgreeing with others, but I am always impressed with you style and the depth of you observations.
    I have 3 “children” (older than Dylan) that are not autistic, and one 9-years old boy that is autistic. As I see some tapes from the past, I can figure out that as a dad I act is the same sense you reported in this post even with my older sons (2 male and 1 female), and sometimes I had reactions from the comunity that were similar to the ones I’ve read right now. Some people were impressed with my relationship with my “children” and even nowadays sometimes I get some comment like “you look like as you are brothers, not dad and son, or dad and sister”. Please keep doing this magnificent work you are doing with Dylan, and sharing some experiencies in this beautiful way you do. Best regards.

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    • Hello Eder – thank you for reading my posts and for your nice comment which is much appreciated. It is interesting to hear from a dad – I did wonder while I was writing the post whether there could be similar issues for fathers, or particular challenges for father-daughters. I imagine that your 9 year old benefits from the experience you have already had with your much older children πŸ™‚ Liz

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      • Hi, Liz, thanx for your kind reply. In fact, I am trying to use my former experiences to make my little one’s experience a good one. As any father is supposed to try…

        πŸ˜‰

        Best regards

        Eder

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  4. Looking at your photos I think you do look a bit twinlike, maybe it is the expressions that are similar when you are smiling for the camera? certainly related and connected. Because I have an autistic family member I would probably pick up something from the hands and the fullness and the sort of structure of Dylan’s grip in various of the images as I have personal reference for those. I have a bit of prospagnosia so am not very good with faces anyway. Maybe it is the closeness of your heads to each other, the tilt of Dylan’s head towards you suggests confiding and a closeness that is warm and secure. Handholding amongst adults of a certain generation is so rare in England that it is nearly always ‘clocked’ by people. If one sees two adult women holding hands, the thoughts go.. mother, daughter? lesbians? rarely do people think two friends. The gender thing is also part of this. Being out with my young shorthaired sister as s teenager I was once considered to be her mother and she my son and on several occasions I was referred to as my father’s wife. I suppose we have to be able to figure out relationships fairly quickly so we can behave appropriately and not commit social faux pas. One story, not an autistic one, for you : I worked for a married couple who ran a small company, but did not share their surname. They were having a baby. They employed a new member of staff but did not tell her explicitly they were married. On her second or third day in her new job in our open plan office, she turned to the woman partner who was sat within hearing distance of her husband and asked her who the father of her baby was. Everyone choked and fell about laughing, the poor new staff person was completely mortified. There had been no clue, no handholding, no anything between her new employers to indicate that they were married to each other. Complicated business, the signalling of relationship, I think the T Shirt is an excellent idea πŸ™‚

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    • Hi J – good to hear from you. What interesting reflections. Yes, the hands! They are often the first thing I notice. I think autistic people have very eloquent hands – and because they are often involved in ‘stimming’ they are also, I think, a source of pleasure. Certainly they are for Dylan. I might write something about hands actually. As for faces, as you know I also have a bit of prospagnosia (I also don’t remember the word for it so thank you!). I can’t always recognise people by appearance so I sometimes make sense of someone by a tilt of the head or gesture. I hadn’t connected this with the woman on two sticks when I wrote the post though. Thinking about it, maybe this is how Dylan recognises people too. I like that you can see the twinness of us: the idea of it is growing on me! Your story’s great. Poor woman – I feel for her, knowing I would probably have asked the same πŸ™‚

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  5. It is very interesting how age changes peoples assumptions of what is appropriate and what is not. I am finding now as my daughter is getting older that her meltdowns are no longer looked upon as the behaviour of a naughty toddler but something else altogether. What once was perceived as bad parenting/badly behaved child but acceptable is not as she gets older seen as strange or weird. My daughter is tall for her age and looks nearer 12, to see her curled up on a ball on the floor elicits stares and avoidance.
    Thank you for your blog as ever it has echoes in my life. It is fascinating how your closeness is so much more than hand holding but a form of communication too. I loved the pictures πŸ™‚

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    • Thank you Tinc πŸ™‚ It’s always lovely to hear from you. You’re so right about the age thing – writing the post made me realise how complicated the issue is and, as you say, that judgements are linked to age as well as sex. I was also conscious that the issues are probably different for fathers-daughters, fathers-sons, mothers-daughters, mothers-sons. Even without autism there are key differences between those relationships – add autism and adolescence to the equation and you have huge scope for misunderstanding πŸ™‚

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