The Gift of Unconditional Love

Very often when I talk with parents of Autistic children, especially parents of Autistic children who are non-traditional communicators, one of their deepest and most abiding fears is that their child will never say the words, ‘I love you’ to them. 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 chords? 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.)

And if that’s true for our children, then it is so for us as parents as well. Most of us offer our children the words ‘I love you’ regularly. But do our actions always reflect that declaration? By just saying ‘I love you’ to our children, do we make it so? Will our children see our love in our actions and interactions with them? Will they believe us?

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 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 likable) 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 important of investing in your relationship with your Autistic loved one (https://reframingautism.wordpress.com/2018/10/15/investing-in-relationships-the-core-business-of-parenting/). 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.

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Autistic Pride Day: Celebrating My Autism

When I was a little girl, my family was caught in a cyclone. It wasn’t a severe cyclone, but I remember walking up a concrete ramp towards the local high school that was the evacuation centre, and the wind being so strong that it took all my Dad’s strength to keep me from being blown off and away. I remember the feeling of being buffeted and battered by the wind, of having to put my head and shoulders down and battle my way through that gale that pushed me back and up and off at every step.

I always felt that that cyclone was a good analogy for my life.

I wasn’t identified as Autistic until I was an adult. But in my analogy, I always thought that my Autism (or before my identification as Autistic, my difference, my social clumsiness, my awkward manner, my anxiety) was my cyclone, the force I was battling against, that made my life difficult and grueling and tumultuous and blew me off course.

I was wrong.

Now, looking back, I know that Autism wasn’t my cyclone at all. No. Actually, the cyclone was the isolation, and the loneliness, and the peers who couldn’t see past the difference to see me. The cyclone was the world that wasn’t – isn’t – geared to accept me as I am. Those are things that really pummeled and battered me, and kept me anxious and alone.

In reality, my Autism was my protector, my guardian, my shield. It was the part of me that filled me with joy, that satisfied me and made me content, that sheltered me. Autism was my friend, my companion, a bubble within which I could just be. Without censure. Without judgement.

When I was in high school, when I felt the brunt of my peers’ prejudice, my Autism gifted me a special friend in the form of my Maths teacher, who shared my passion for King John and his two Isabella wives. My teacher and I debated this much maligned King for many contented hours. Now, I imagine most 14 year-old girls would feel a certain peer pressure to eschew befriending an adult (especially their Maths teacher), but my Autism cared little for ageism or social expectation: it craved connectedness, shared interests, and quality conversation. That is the freedom of my Autism.

For most of my teenage years, I read between 10 and 20 novels weekly. My parents would take me to the local library every Saturday morning, and I would return my books from the previous week and borrow another pile that I would read into the wee hours of every morning. I loved – still love – books. With each book I read, I made new friends, and the characters would give me the companionship and acceptance I so desired. I suppose that might sound sad, but books allowed me to travel to the most wonderful, remote and fantastic places; I have travelled through time and space and I still count my fictional friends as some of my closest. My Autism gave me the capacity to imagine with an intensity and vividness that meant I could expand my reality beyond the mundane. That is the extraordinary capacity of my Autism.

For all of my life I have adored movement. I was fortunate enough to see Sylvie Guillem and Rudolf Nureyev dance in Giselle when I was a young girl, and I will never forget the visceral joy it gave me to see the complex grace of their motions, their symbiotic bond to the music. I felt their dancing within myself, with far more complexity and totality than simply watching implies. And now when I hear music – whether it’s Prokofiev’s Romeo and Juliet or Simon and Garfunkel or Wolfmother – I experience the melody and the emotion in my whole body. It is a delight that is difficult to describe, but each sinew, each ligament, muscle, and organ vibrates with the satisfaction of immersion. I experience an elation, an exultation, an ecstasy that is so much more than simply listening to music. That is the joy of my Autism.

I experience the world in technicolour. I notice each detail. Every smell. Each petal unfolding, each cloud forming, the subtlety of colour, the nuance of seasons. I see the texture, I smell the emotion. I don’t need to remind myself to stop and smell the roses, because my brain is so attuned not just to their perfume, but to admire the velvety beauty of their petals, the delicate thinning of the petals, the magnificent patterning, the blending of colour that defies description. Every time. Sometimes that intensity is overwhelming and challenging, but it is also wonderful. That is the beauty of my Autism.

I think my Autism is beautiful.

So often in this world, we judge people on their contributions – what they can offer, what skills they can supply to society – and we equate value with the promise of what can be given, what might be done. Often Autistics are maligned because our contributions are not conventional. When we are lauded it is often because we have some splinter skill that is desirable and has social currency. But I don’t judge myself – or my Autism – by such limited standards. My Autism isn’t valuable or beautiful because it will mean I contribute to society, conventionally or otherwise. It is not beautiful because I have savant skills that make me extraordinary. I am certainly not the next Albert Einstein or Daryl Hannah or Stephen Wiltshire. It is beautiful because it is. Just that simply. Because, for me, my Autism is my rainbow, my sunshine, suffusing me with colour and showing me the beauty in the world. It is a celebration.

And so, on June 18th, I think it only fitting to celebrate my Autism. Because it deserves it. Happy Autistic Pride Day.