Is My Autistic Boy My Son?

more son 005I’ve only very recently started referring to Dylan as my son.  For the first 18 years or so of his life I called him ‘my boy’; until the age of around 11 he was ‘my little boy’ and more recently he’s been ‘my big boy’. Of course I understood that for some purposes I needed to use the category ‘son’ – in official documents which asked me to identify our relationship to each other for example – but I preferred not to use the s word if possible.

For me the word ‘son’ describes a socially constructed role. The meaning of the role may vary over time and across cultural groups but in each society there is agreement about what the role involves.  Our understanding of ‘son’ (and other social roles) is reinforced through powerful socialisation agents such as the family, school, religion and the media.  So while nobody has ever explained the role of ‘daughter’ to me, I have developed a pretty clear idea of what this entails in the society and community in which I live.

Fly-on-the-wall TV documentaries which follow events on maternity wards are currently very popular in England and I quite enjoy watching these. I’m frequently struck by the use of the words son and daughter by families and midwives at the moment of delivery:  ‘Congratulations you have a son’ or ‘We’ve got a daughter’.  There’s a voice in my head which counters: ‘No you have a baby boy or girl who may, in time, take on the social role of son or daughter’.

more son 004I may argue that a newborn baby isn’t yet a son or daughter, but would I describe the woman who has just given birth as the child’s mother? Mothering is also, after all, a socially constructed role; there is agreement within society about what it involves (that it is a nurturing and educative role) and about perceived transgressions of the role (such as the abandonment of a child).  As girls are socialised to the role of ‘mother’ long before they have children of their own, there is a sense in which they are prepared for motherhood before the delivery of their children, unlike the newborn baby who has no awareness of the social roles within the society it has been born into.

So what are the implications of this for autism? Given that autism involves a ‘triad of impairments’, one of which is socialisation, autistic children may not always grasp the social meanings of being a son or daughter, or the social role of mother or father.  Does Dylan know that he is my son? I don’t think he would recognise the word (admittedly there is a problem with it sounding like ‘sun’) and I’m fairly sure that he isn’t aware of the implications in terms of his social relationship to me. While these things may be an explicit enough part of society for the majority of us, I would suggest that for someone who is not only autistic but who has a communication and learning disability (‘intellectual disability’ in the US), social roles are not necessarily clear at all.

Autism and Gender

 Sociologists have suggested that the socialisation of children to gender roles begins soon after birth.  When my children were born I was determined that I would intervene in some aspects of this process. While I didn’t want to isolate my children from their peer group or from some established norms, I did aim to challenge gendered responses to childhood and education, particularly for my daughter. Both my children were therefore given gender-neutral toys when they were young, were spoken to in gender-free language, and were encouraged to make choices on the basis of their interests rather than according to beliefs about what was ‘gender-appropriate’.

ice again 002Challenging established practices around gender isn’t easy as I quickly discovered. When my daughter was born she was instantly wrapped in a pink blanket by the nurses. I asked whether it would be possible to find an alternative colour, thinking I may as well start as I meant to go on. The nurses reacted with astonishment but, after attempts to distract me from the request failed, produced a green blanket. They were clearly, however, not comfortable with this; all the other babies in the ward were wrapped in either pink or blue waffle blankets.  By the time someone took this early photograph of my daughter, a nurse had tried to re-establish the pink.

This was the first of many incidents I encountered while bringing my daughter up to be free of what I considered  stereotypes for girls. My ‘little boy’, meanwhile, was growing up marvellously free of any conception of gender whatsoever, quite effortlessly and with absolutely no input from me.  Dylan is now aware of biological sex difference – an awareness which I think developed around the time he started needing to shave – but for many years I don’t think he thought of himself as ‘a boy’ particularly.  Dylan certainly wasn’t aware of the roles which society thinks of as ‘appropriate’ for boys and girls; he would dress in, behave and interact with whatever interested him, regardless of social conventions around gender. For many years, therefore, I thought of Dylan as ‘gender free’; for me this freedom has been one of the celebratory aspects of living with autism.

I remember an incident when Dylan was young, perhaps nine years old. My mum and I had taken the children to York for the day, an ambitious outing by train which had left us all tired and Dylan a little fretful at the end. Visiting York Minster in the late afternoon there were signs that it was becoming too much for Dylan and we decided to go to a tearoom hoping this would re-orientate him.  As sometimes happens, we made the decision five minutes too late; Dylan was already moving into meltdown as we entered the cafe. We happened, that day, to be assigned a magical waitress; a young woman who may or may not have had personal experience of children and/or children with autism. What she had in abundance, though, was an ability to understand and to communicate without language; she noticed Dylan looking at her beads so took these off and gave them to him. The beads were wooden and rough-hewn, threaded on elastic and looped around her wrist. They seemed to calm Dylan like juju beads.

That afternoon tea and cake turned from a potential meltdown into one of the high spots of the day in terms of our sense of well-being. As we left the cafe, heading for the train home, I tipped the waitress and returned her beads. ‘No’ she said: ‘I would like the little man to have these.’   And so she wrapped her beads around Dylan’s wrist and for months afterwards he wore them, and sometimes I did, and we talked about the York waitress until the elastic snapped and we lost them.

Disney Princesses

pink and  blueAs well as letting Dylan wear beads I have, over the years, bought toys and resources for him which were clearly aimed at girls rather than boys. I have previously written about Dylan’s love of Disney, a passion which for a long time has been his main interest. At birthdays and Christmas, wanting to give Dylan something that would capture his attention, I have been driven by whichever Disney movie is his current favourite. This has often meant searches for items based on films which are gender-marked female and which feature a princess narrative.

One of Dylan’s enduring interests has been Sleeping Beauty. He seems to be attracted by a number of ingredients in this film including the presence of fairies (flying people have long been exciting and seem to underlie his current love of Peter Pan). One scene in particular makes Dylan squeal with pleasure; there is a fight between the fairies as to whether to decorate Aurora’s dress, and later her cake, pink or blue; using their magic wands to alternate the colour, the fairies squabble:  ‘make it pink!’ ‘make it blue!’ ‘make it pink!’ ‘make it blue!’ These scenes seem to me to symbolise the gender issue brilliantly- though Dylan probably likes them because of the colours and the cake.

frozen2How much influence might these Disney princesses have on children in general and on autistic children in particular? A recent review of the Disney film Frozen in The Guardian Film Blog notes that Disney’s writers are producing increasingly independent and ‘less compliant’ lead female characters. However Anna Smith, the reviewer, bemoans the animators’ continuing use of ‘tiny nipped-in waists, no hips, long legs, skinny arms, pert breasts, small feet and eyes three times the size of the male characters’. While congratulating Disney on the strong female characters at the centre of Frozen (an adaptation of The Snow Queen), and recent female heroes such as Merida in Brave, Smith argues: ‘when so many girls look up to Disney’s princesses as role models, surely it’s time for a rethink of the animation formula.’

princess palace2If girls look up to Disney princesses as role models, what can autistic boys  (and girls) possibly make of them? In my earlier post I suggested that Dylan had engaged in social and emotional learning through his interest in Disney. His favourite films, I argued, had helped him to understand social relationships within a family and to recognise different emotions. Does the learning which I described Dylan as engaging in through Disney films extend to learning these stereotypical gender roles? Or even, given Dylan’s love of films with princesses, to him identifying with non-traditional gender roles?

My son 006During Dylan’s Sleeping Beauty passion I bought him a Princess Palace for Christmas. I thought it would be his heart’s delight but I have to confess that he showed little interest in it and I later donated it to a school fair, virtually unused. Also of only limited interest (though I can’t bring myself to throw it away) is the Snow White musical globe I bought for Dylan at age 13. As I make these reflections I realise that Dylan’s love of Disney films has not particularly translated to an interest in linked resources or toys. Whatever Dylan has learned from Disney, I don’t think it is about gender. Or is it?

Mannequins and Mothers

geppettoMy sense is that ‘my big boy’ is starting to develop some recognition of social roles; Dylan has recently named a character (Geppetto in Pinocchio) as a ‘daddy’ and he sometimes recognises representations of mothers in storybooks. Dylan has been naming me by my social role (‘moo-ey’) for some time now and perhaps has some idea of the meaning of this label (i.e. that other people also have a mummy).  In the first couple of years of Dylan’s life, though, he wasn’t exposed to this role-naming at all.

I was one of those parents who wanted my children to call me by my name rather than by my role.  Sure I was the mother of my children, but I wasn’t only that; my identity as a person went beyond my mothering and, knowing how powerful language is, I wanted that to be acknowledged in what my children called me.  My children would, of course, know that I was their mother – but they didn’t have to call me mother. So when Dylan was born I called myself Lizzie. Dylan’s autism diagnosis at 23 months changed all that. I decided that I needed to simplify language and concepts and so I started to call myself ‘mummy’ instead. This matched the language Dylan was encountering in his picture books, the media and in society in general.  My daughter, just five months old at the time of Dylan’s diagnosis, inevitably shared in this re-naming.

My son 001 Because of the severity of Dylan’s autism and communication ‘impairment’ it would be many years before Dylan spoke my new name. When he did he was around nine years old; an entry in Dylan’s home-school liaison book reported that he had hugged and said ‘mummy’ to a dressmaker’s mannequin that someone had positioned in the school foyer. ‘That’s a compliment for you’ Dylan’s class teacher had written in the book: ‘she’s very petite and no more than a size 6’ .

I am, I hasten to add, not a size 6 but a very healthy 12. If Dylan intended to compare the mannequin to me that day it was not because it reminded him of me specifically, but because of the social role he perceived the mannequin to represent. Given the resemblance between the dimensions of mannequins and Disney princesses, I have to concede the possibility that Dylan has learned more from Disney about gender and social role than he has from me 😉

 Images:
The film images are via Disney and the photographs of Dylan and me were taken by my mother; the other photos are mine.

87 thoughts on “Is My Autistic Boy My Son?

  1. Hi Liz,
    Very thoughtful and interesting post. I never thought about gender issues among autistic individuals before. As you know, my own brother is at the very lowest end of the spectrum and has never uttered a word even though he just turned 64. He has that autistic aloneness, a term that has often been used to describe his and many others’ lack of social interactiveness. He is his only identity, which includes his sexuality. I know he is aware of his male-ness, but only as part of his makeup. He keeps everything to himself and has never (as far as I know) recognized the sexuality of others, just as he ignores or doesn’t seem to be aware of other traits in other people. He may be aware, but I haven’t found a way to understand if he is.

    I can’t imagine how big a problem sexuality must be for those individuals and their caregivers who are a little higher on the spectrum.

    Thank you for this post.

    Best,

    Jack

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    • Thank you Jack. As you know I’ve followed your posts about your brother with interest. Sexuality is an issue I’m probably still ducking in relation to Dylan. I definitely think he is becoming more aware not only of his maleness but of his masculinity. I didn’t specifically address the issue of my being a single parent in the last post, but I am aware of the lack of male role models in the home for Dylan. I’m very glad that he has access to male carers at his day centre – though it has to be said that there are generally few male care workers in the sector. I guess it’s the same in the US… Good to hear from you and thanks for your comment Jack, Liz

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  2. This is a beautiful post. I’ve noticed for some time that it means something different to me when I refer to my 5 year old as my daughter and not girl, baby, or 5 year old. She’s not autistic but has a lot of developmental, and perhaps intellectual, delays and a severe communication disorder. I don’t generally think of this in terms of the social meaning of “daughter” but in the intimate relationship it describes between the two of us, the fact that she is a part of me and made me a mother, something that is easy to lose sight of when I’m swept up in worrying about her differences and her education.

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    • That’s a lovely thought Kristen – to use the term ‘son’ or ‘daughter’ to describe a relationship of intimacy rather than a social role. Thank you so much for that. Also, your reflection that our children make mothers of us. Yes, of course; society may have prepared me for the role, but only my children have gifted me this. Thank you so much. Liz

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  3. We all play the cards that we are dealt, just do the best with what you have. My grandson had brain cancer at the age of two. Beat it but we were ready to accept whatever the outcome was. It turned out fine but it was a scary time. Good luck and enjoy what you got. The very best to you.

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  4. I want to share that I had to stop reading. (well, I didn’t but I felt the wish to do so, so I did)
    I wanted to scream about how inhumane that you seemed to me in denying or accusing your son of being less human. I thought about how I feel about my own autistic son, who is nearly an adult, and I am glad that I did not have those issues nor wishes and expectations of who he should have been, that I have to mourn. That would cause me quite a lot of feelings of separateness. I began to try to come around to your way of feeling and expressing, your way of labeling. I tried to see your point. I’m laughing now at the idea of having the autistic person have to first translate and then attempt to be MORE compassionate perhaps than caregivers to do and to be and to wear a suitable mask that makes a person LOOK the part, no matter what that part really is, inside. It’s really hard. It’s also really hard for me, during my day–especially if a rather bad day, to remember that I am asking my kiddo, the one supposedly needing the help, to work harder and to be better at things because I’m not able to see outside of my own wishes or views.

    Thus, I would like to apologize. I think I missed the mark in understanding your words as viewing your son as a thing that sprang forth from you, was exchanged for alien life form resembling body of son, while you look at it from a distance. I will come back again once I’ve worked through my own feelings and cleared off my own side of the street. I also recall having a few of those moments where I have wondered such a thing. I found that many mothers have that feeling. It was freeing.

    I am also thinking about how moms of children with differences must be seen as the great explainers…explain why I do this or ‘allow’ that and so on and so forth. So, I’ll say that I hope that you do not feel like you have to explain. I’m just going to go be emotional now at all of the things that we can say that are not understood or that change every moment. I’ll come back and read some other posts so that I might better hear and to understand.

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    • Hi Elisa – thanks for sharing your honest reactions with me and for reconsidering and re-thinking your reactions too. It can be hard in a single piece of writing to capture a whole picture. The post that wordpress decided to promote was probably the most ‘detached’ piece I have written while I’ve been keeping this blog – and that interests me actually. I hope that if you look around some of the other things on my site you will see that I celebrate my son. There is no mourning here. What I was trying to do with the piece was reflect on the fact that my son is less subject to some of the pressures which society creates about what is appropriate for men and women; he isn’t affected by advertising or peer group or fashion to act out a role as a ‘man’, nor is he aware of expectations around roles such as ‘son’. I actually celebrate this. I think it is liberating. Far from suggesting that this makes him less than human, I would argue that my son is far more in touch with his essential humanity than many of us are. There are times when I wonder whether I am doing something because I really want to or because I feel under pressure from society as a woman to do or be a certain thing. I rejoice that Dylan’s response to life is more honest and straightforward. I hope that helps a little. I’m sorry if I wasn’t clear. Words are so difficult and slippery I think…

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    • Indeed Lorraine! And that is what I sometimes did but D has suddenly grown so big it no longer feels right when I say it. He is a young man now. I can’t say ‘my young man’ though because that means my boyfriend! And I can’t say ‘my adult’ – that is just not something we would say. I guess parents describe their adult children as sons or daughters – which I suppose was the trigger for my post because of my uncertainty about Dylan’s understanding of ‘son’ and thus my hesitation to use it

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      • How about calling him your Grown Son? I have a 23 year old son with mild learning disabilites, and he hates to be called boy, which we did all his life! “I’m not a boy!” He’d say “I’m a man!” I mean he really hated it. So I say “My grown son” if I remember! LOL

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      • Hi Lorraine – thanks for your suggestion – you know, since I wrote that piece (a while ago now) I have tried to switch to something very similar – ‘grown up son’ I sometimes say. When I’m tired I slip back to ‘boy’ but I use it rarely now. Dylan has grown so much in the last year too – he might not be very verbal but I can tell by the way he looks at me he doesn’t want to be my boy anymore 🙂

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  6. I read the linked article about Disney princesses and was reminded of something I read last summer. Before Snow White went into production, Disney sent all his animators to art school for two years to learn how to draw realistic human figures. The result was the most proportionate, healthy, and beautiful Disney princess ever. Granted, she was much “too perfect” in other ways, and that “kiss from the prince just to live” bit is a real fly in the ointment from today’s feminist perspective. Still, physically speaking, she’s the most real, and one of the most enduring. There’s a lot to be said for the classical art of drawing people as they are. If Disney combined today’s story lines with Snow White’s artistic style, they’d have a blockbuster princess flick.

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    • Hi there – that is a fascinating nugget. Thank you for sharing! I hadn’t really thought about Snow White’s rather different proportions but yes, I can see it now. Snow White is definitely Dylan’s favourite princess 🙂

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    • Hi there – Dylan is doing great, thanks 🙂 I suppose it is a sensitive topic. I didn’t want to approach it from the ‘sexuality’ perspective, or in relation to intimacy in relationships, though. I was more interested in gender roles in society and the fact that my son is less affected by these – it’s a good thing I think! Liz

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    • Hello Treyce – nice to hear from you and thank you for the hugs. I can’t imagine what it must be like to discover the diagnosis all those years after. Nor what it must have been like for someone to carry the secret. I’m going to look around your blog when I get a moment. Lots of love, L

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      • Thank you for your reply. When I was “in” it – trying to figure out what was ‘wrong with me’ it was difficult. However, now? I feel it was beneficial for me because I had to be pragmatic and proactive in trying to work my way through life without assistance from community or social services… or my family. I think because I was isolated, it helped me and I am way better because of it. Luv back 🙂

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      • Hi Treyce – that’s interesting that it made you stronger. Although it’s a very different disability it reminds me of the husband of a friend of mine in the US who has an inherited degenerative sight condition he didn’t have full information about at the time. As his eye sight got worse he learned to live with is ‘worsening condition’. He and my friend have four kids so life was full on and demanding. My friend used to shave him in the mornings but as family life got busier he taught himself how to do this, and to do lots of other things to look after himself and his family. He had dropped off the radar of medical services or whoever in the US provides assistance to the disabled. When he eventually made contact they couldn’t believe how much he was doing for himself, and how he was dealing with his lack of sight in a sighted world. He kept being told he was this amazing example of living with disability whereas to my friends they were just being ‘pragmatic and proactive’ in working their way through life as you describe about yourself. Thanks for sharing 🙂

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      • Very interesting. Genetically I understand the sight situation – macular degeneration runs very strong in my family and, as a handwriting expert, my eyes have been the *key* to my life’s work. Part of me (decades ago) used to be more concerned about that than I ever have been with my Asperger’s. Personally, if I have to lose something I’d prefer it to be my sense of smell :/ Thank you for sharing; I am following your blog and enjoying it very much!

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  7. I have trouble even imagining what it would be like to be free of gender responsibilities, especially in my roles of mother, sister, wife, daughter. We only accumulate those as time goes by, obligations changing and growing with our growing up. Daughter means different jobs at different times of life, which I can see as my parents are aging. Wife has changed as we had children, too. Even my own daughter, only 4, has responsibilities in the family, based on age rather than sex, she puts our cloth napkins on the table before dinner and in the hamper afterwards. She helps us remember to bring things with us and carry things from the car. I’m training all my children to take on responsibility for themselves and their things. I haven’t stopped to think about their relationship to me, and their potential responsibility to me. That gives me pause. My children are not autistic, but they have their own unique challenges that we respond to and have grown into, as any parent grows into the responsibility. They are strongly gender-identified even though I also tried to use gender-neutral colors and language. The larger culture has had a strong impact, through Disney, Aardman, Hollywood and school. I’m trying to imagine them gender neutral and failing. What an amazing post, it really made me think. Your boy, your grown child, your son, he is lucky to have someone so thoughtful and insightful on his side. Regards, Brenda

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    • Hello Brenda – thank you for these interesting reflections (and for your compliment, which I do appreciate). I hadn’t really considered the way our roles change over time, but yes of course; I’m thinking of my aging father as I write that and of how my role as ‘daughter’ has evolved (and differently from that of my sister’s). One of the many things Dylan has taught me is patience; I guess with time his newly-emerging social role may become even more recognisably that of ‘son’. It’s interesting that you reflect on responsibilities as part of this. I hadn’t thought in those terms but I think you’re right and that also helps me a lot. In particular I was struck by the roles which you describe your 4 year old daughter as taking responsibility for; these are just the ones that Dylan has at home! He always sets the table for me at dinner (mats and cutlery); carries the groceries from the car with me after we have been shopping; and is absolutely brilliant at remembering and collecting up his things when we are going somewhere. Before D left school last summer his school did some assessments and suggested that he was functioning at around 5 years old, which is not dissimilar to your daughter. So maybe if I apply D’s developmental age to emerging awareness of gender and social role this helps things to make sense. Age appropriateness is also something I’m really interested in, in terms of autism, so I’m very glad for this thought. Thank you! Liz

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      • Hi Liz, I enjoyed chatting about this. It helps me frame my parenting when I consider other people’s situations. I hope to do right by my kids, and I put a lot of thought into that. Also in drafting my stories, I try to think through things. I enjoy that process. Cheers, Brenda

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  8. I know this is strange coming from a stranger but I want to tell you that I’m proud of you.

    I am nurse and former med student (but hopefully will be again). I once experienced assisting in giving birth to a baby with down syndrome. The mother that time didn’t want to hold her baby and just kept crying. It was only later that I’ve found out that she was already a mother of 3, all of them had down syndrome.

    There were mixed opinions inside the delivery room that time. Some were sympathetic and some weren’t but I on the other hand still wasn’t sure what to feel.

    All I knew was that whatever anxiety and sadness I felt that time, the mother had it far worst.

    The following day, when I did my rounds, I saw the mother nursing her son as if the drama a day ago was but a dream.

    Mothers like you are really amazing.

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    • Thank you – we are perhaps as strong as others help us to be – in which case you are part of my strength now. Thank you for that. Your comment has made me wonder how it must be to have a child whose disability is obvious at the moment of birth. With autism, it isn’t; I had no idea and for almost two years lived with my head somewhere else. I have sometimes thought that it is this time before the diagnosis which makes the aftermath feel hard, but perhaps that is not the case at all. I suppose every mother’s reaction to disability is unique; I really admire you not making judgement on the mother you describe; there is understanding in your statement that you weren’t sure what to feel. All the best to you, Liz

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  9. I have a 12 year old son that is high functioning. Our life is a roller coaster. I really commend people that can open up and talk about it. I know there will be a time that I will be brave enough to let people into “our’ world. I love my boy but I would be lying if I said that it was easy. Thank you for sharing

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    • Thank you Yolanda. I agree life isn’t always easy and that it is a roller coaster – though I have found that with time the ups and downs are evening out a bit. As for opening up, I’m not sure that it’s brave. There are days I think about taking down my blog because of anxiety about the exposure. This freshly squeezed thing that has happened is certainly a further challenge in relation to that. But I wanted to set the blog up to share some specific stuff about autism provision (which I say a bit about in my ‘about’ page). It was easy for me to do, initially, because as a poet I’d written about life with my son. However, poetry doesn’t get too many readers and you only very rarely get any response from readers – so sharing stuff here has meant I’ve had to think again about all sorts of issues. That’s a good thing – perhaps the brave thing is not the sharing but thinking again about what, why and how to share. Thank you for reading – and best wishes to you and your family, Liz

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    • Hi there – thank you for your comment. It stuck in my head that the waitress called him that as it contrasted with the femininity of the beads; I liked it a lot, especially as D was just a boy at the time. I’ve liked the term ‘little man’ since – nice that you call your son that 🙂

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  10. You do realize that autism is totally curable before the age of 5. Many people have already and are speaking out about it. Jim Carry the actor for one. His child had autism and now no longer. The cure is not easy, you actually have to buy milk that is organic and unpasteurized to provide the proper gut flora for you child. So that the food that they eat doesn’t become toxic to there brain. Dr. Mercola is another source that offers the resources from the worlds top doctors on the subject and how to cure your child.
    I also raise an autistic child who is now 17. I wish I known earlier what I now know.

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    • Hi there – thanks for reading and for your comment. Interesting to hear that your son also didn’t stick to society’s idea of what is and isn’t appropriate for boys and girls. I have never been sure how much it is my son’s learning disability and communication impairment which have freed him from gender roles and how much it is his autism – though my sense is that it is autism. So it’s interesting for me to hear from a parent of a young man with Asperger’s… Thank you.

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  11. I work at a therapy clinic for children with Autism Spectrum Disorder and I know it must be difficult with the day to day challenges the families deal with, especially when they feel like there’s no hope. I commend you and I know the best is yet to come! 🙂

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  12. Cheers to you, mom….My daughter was born without a part of her brain, and we were told she’d never be able to learn anything, but like you, I took my cues from her, and with God’s guidance, she became an independent adult…….still lacks good judgement on some things, though (lol),but she’s making it. Of course, that judgement issue may be due to the fact she’s 42 and just finally going through teenage developmental stage……….
    But I have loved the journey with her, and thank God for her, every day of our lives.

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    • Lovely to hear from you – and cheers to you too – what a lovely story. You’re so right about that developmental stage thing – the concept of age-appropriate is as meaningless as gender-appropriate on my journey with Dylan. Sounds like it’s the same for you. Blessings, Liz

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      • Thanks, Liz…you sound like one of only a few people to get that. Guess that’s why I understood it, for Dylan. I pray you have guardianship?…I didn’t, and now state has her. Trying to get her back, but courts take time. I HAVE LOTS OF TIME, since my husband passed, so we should be OK in the not very distant future God’s Blessings to you and Dylan.

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      • That sounds like a hard story. Loss is difficult. But you sound like a strong and optimistic person. I have been trying to understand the paperwork and legal implications now my son is an adult; it certainly takes time and attention. Life seems to get harder after the school years. All strength to you. Liz

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  17. I am wondering how to word this. Its the language, as much as societal expectation which literally engenders and restricts our possibilities English is too binary for the autistic mind to make sense of. I came to your blog via your poem Good things…, which moved me in its understated beauty. I write too, know about taking out to leave space.
    I have a daughter who is I believe high functioning Aspergers, she used to be named a boy. She has now made the decision to identify as a woman. Many who knew her as a child are unsurprised, rather- people have been more concerned for her physical welfare in making the change. She would be gender-unbiased if she could be. She has been made to choose by a binary society so has rejected masculine as an identity.
    Like you, I believe children should have range of toys and role models. She was not assigned ‘boy’ toys only, though her preference for construction systems then computers was accommodated. I also chose yellow or white, not blue/pink and looked to aptitude and interest not projections of society. Play is about exploration of skill and the world. For Autistic children its more sorting or honing, less about fitting in and social juggling, perhaps because we miss that level of being. We miss the judging and projecting too, its not a bad thing apart from the discrepancy with the ‘norm’.
    I worked to supplement my daughter’s education with compassion, listening and respect so she has become a caring empathetic being. It is her wish i use the word daughter, to show acceptance of her decision.
    You are right about age-not-chronology too. We are what we see, who we are now. We can become more with support. Acceptance and allowing were tools my parents couldn’t pass as they used control as their own mechanism of coping with society. I think I would also have been labelled Aspie if such had been considered back in the 1960’s for anyone who was not severely communication-with-normal-people impaired. I found my own role by working with animals, un-judgmental beings communicating in ‘pictures’ (see Temple Grandin’s work) and energetically, latterly as a storyteller and nature school provider.
    I would like to see us accepting what is, who we can be and helping each other grow -if we want to- and in our own way and pace. My partner is autistic. I have watched him mature in his 60’s as he is accepted for who he can be. Sexuality? Its not something he understands the point of, though he had ‘married life’ and children, as he was told he must. He sees the point of love into action, service to the world. His mother would have been proud: she had been told he would be useless. We are grateful for what we learn every day.

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    • Hi Rosie – thank you for reading my blog (and poem) and for your thoughtful and illuminating comment. What you say makes sense to me. I wrote that post (about gender) a while ago now and my thinking has developed as I’ve watched Dylan grow. Perhaps I’ve revised some of my positions, but the essence remains. I’ve become interested, recently, in the phenomenon of ‘aspie girls’ so found some of your observations really interesting. Thank you. You sound like a very accepting and supportive person, Rosie – this comes across so strongly in your comment.

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  18. Pingback: Day 52: Anticipation And Anxiety | Living with/out Autism

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