Written by Dr Melanie Heyworth
It seems to many parents to be such a fundamental and profound need, to hear those words, spoken by their child, in their child’s own voice, like it is the ultimate proof of the bond between child and parent, the paramount evidence of shared devotion. And from the murmurings of sympathy I hear from other parents, many share this view.
And yet… I wonder about the visceral grief parents feel when they find themselves facing a future in which they may not hear ‘those words’. I wonder when words became so important, and when having a metaphoric voice became synonymous with having a literal one. Does a child who uses AAC (Augmentative and Alternative Communication) to say ‘I love you’ say it with any less conviction for not using their vocal cords? Does the fact that a child uses signing to say “I love you” undermine the depth of their feeling? Does a child who shows their love through their every communication and behaviour, but not with their words, feel that love any less?
It’s the last one, isn’t it, though? Because ultimately parents doubt their entirely subjective interpretation of their child’s intention in particular behaviours. Does their child’s smile constitute a declaration of love? Does a cuddle? Does their son’s preference for their company, above everyone else’s, speak to his love for them? Does it indicate love when their Autistic daughter seeks comfort from them, and believes that they can give it to her? What about when their child simply glances in their direction, to make sure they are still there? What about when their son trusts them, and them alone, to touch him, even though he anticipates that their touch will be excruciating? Is this love? Is it a declaration of love? Is it enough?
I would answer emphatically yes. Our children communicate their love to us every day, through their actions and behaviours. Sometimes that communication is obvious: my littlest likes to make his fingers into a love heart sign and then point to me. Sometimes it is more subtle and nuanced. When my eldest sits next to me, he likes to rest his foot on top of mine, just to show me that he is there for me, and to assure himself that I am there for him. Sometimes as parents, we just have to learn to read the signs better, and to trust our children that those signs are there. Because, for the most part, they are.
One of the few idioms I really understand is the one about ‘actions speak louder than words’. When I googled that, the first thing that came up was: ‘people say things and make promises they have no intention of keeping on a daily basis. You can tell someone you love him or her as many times as you want, but until your behavior coincides with that, the other person will probably not believe you’. And isn’t this the crux of it? For me, I’d much prefer to experience love from my child than to hear it. I’d much prefer them to show me that they love me — in whatever under- (or over-) stated, idiosyncratic, unique way that suits them — than to hear recited words on automatic recall. (Cue Extreme crooning ‘more than words’, and all that.)
Unconditional love. It’s what we expect of our children: despite our good days and bad, despite our crotchety moods and accidental mistakes, despite our loss of emotional control, that cutting edge to our tone when we’ve had a long day at work, our exasperated lack of patience, the odd moment of lapsed empathy or judgement … we expect that our children will forgive us unconditionally and love us nonetheless. My question, though, is whether we parents offer that same unconditional forgiveness and love to our children? Of course we love them in that biologically-charged kind of way, because they are our children, but do we actually like our children? Do we enjoy their company and find happiness in their presence? Do we really love them for the exceptional, joyous, wondrous beings that they are? Because, if we do, that means loving their Autism, too.
Recently, I was reading an academic article about parenting children with disabilities (not just Autistic children, but very apposite in an Autistic context). The authors lamented the way in which, after a child’s disability diagnosis, parent education often insists that interventions and therapies are inserted into every aspect of a child’s life, even into their home life. This intervention-focus negatively impacts on the way in which parents are able to express their unconditional love for their children. By overlaying ‘intervention’ and ‘therapy’ into every aspect of a child’s childhood, parents make the home an unnatural, performative environment. The authors argue that, over time, children internalise the message that they are not worthy or deserving of unconditional love as they are, that they must change, perform and mask in order to be gifted love. The message is not explicit, nor is not necessarily consciously intended, but children soon come to the understanding that they are unacceptable and unlovable as they are (Turnbull et al., 1999). For our Autistic children, they come to the understanding that — whilst Mum and Dad love them as part of that primal urge to love and protect one’s progeny — they aren’t necessarily likeable as unique human individuals. They internalise the understanding that in order to be more likeable and more personally, profoundly lovable, they need to perform less-Autistically.
But our children have a right to know that their Autism is loved unconditionally too; they have a right to have their identities accepted and loved by their parents. More than that, actually: they have a right to have their Autistic identities appreciated and liked by their parents. Because loving, accepting and appreciating all aspects of our children, including their Autism, gifts our children a sense of intactness (a word I’ve taken from the Turnbull et al. article). ‘Intactness’ is the simple concept that all aspects of identity, of self, are valued as an integral and positive part of an individual. This concept of ‘intactness’ is a key one: all children should feel lovable (and likeable) as themselves, authentic and unchanged… intact. The freedom to experience ‘intactness’ of self is essential for the development of healthy self-esteem and positive self-regard, and is based in part on a ‘parent’s ability to show pride and pleasure in the disabled part of the body, as one valid aspect of the child, and to communicate appreciation and respect for the child’s unique, often different-looking ways of doing things’ (Turnbull et al., 1999, p. 165).
If, as parents, we don’t value our children as whole and complete, if we don’t view our children as worthy of our unconditional and unqualified love, and if we don’t acknowledge and accept their value to our community, our children will grow up with the perception that they must change their essential selves to deserve our unconditional love.
And, of course, if they must change themselves to be loved, our love is not unconditional at all is it?
Let’s face it, if our children internalise a need to change to be loved, that is tantamount to them being unlovable as they are: Autistic. Unfortunately, ‘parents too often communicate to their child, directly and indirectly, that the disability should be hidden or altered, if not purged — the child should strive toward appearing as “normal” and nondisabled as possible’ (Turnbull et al., 1999, p. 166). This striving towards normalcy, the effort to conform to the homogenous ‘typical’, sacrifices a child’s intactness, their wholeness, their identity… It sacrifices their sense of self.
How, then, should we parent? I have written before about the importance of investing in your relationship with your Autistic loved one. That is fundamental. But ultimately, I think we must approach parenting from our child’s perspective. We must offer them the kind of unconditional love that we expect for ourselves. And we must understand what is valuable by listening to the voices of other Autistic children and adults. We must develop a genuine respect for Autism and for Autistic individuals, as valued and valued, whole and complete, worthy of unconditional love, and deserving of unqualified inclusion. We have a responsibility to do better for our children and to embrace their intact identities. As parents, as a community, we have a duty to match our actions to our words, to demonstrate our unconditional love by embracing our children as they are, not as we’d like them to be. For our own children, and for each other’s. Our children deserve that.
The Reframing Autism team would like to acknowledge the Traditional Owners of the lands on which we have the privilege to learn, work, and grow. Whilst we gather on many different parts of this Country, the RA team walk on the land of the Birpai, Awabakal, Wattamattagal, Whadjak, Amangu, Bunurong and Kaurna Yarta peoples.
We are committed to honouring the rich culture of the Aboriginal and Torres Strait Islander peoples of this Country, and the diversity and learning opportunities with which they provide us. We extend our gratitude and respect to all Aboriginal and Torres Strait Islander peoples, and to all Elders past, present, and emerging, for their wisdom, their resilience, and for helping this Country to heal.
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