Dear Autism,
I’ve been knowingly living with you since June 2001. Although on reflection, it might have been longer. Anyway, in all this time I’ve never really opened my heart to you and shared our story.
Thave been times I’ve sworn at you, raged at you, cried over you, been afraid of you and feared for you. I have been confused, frustrated and completely worn out by you. I’ve marvelled at you and been in awe of you. I have studied you, read about you and thought a million things about you. I’ve even written about you. But I’ve never sat down and written to you.
So now, I am. This is our story, Autism. At least, the first few chapters.
I was first introduced to you by name when our daughter, our first child, was a toddler. She was such a delight. She still is, but she’s nearly 18 – can you believe it? Our little one slept well, hardly cried, rarely fussed. I do remember, though, how she recoiled from fluffy toys. This was a bit embarrassing, as she was the first child, grandchild, niece etc and we were rather overwhelmed with cute, fluffy toys at the time!
She also didn’t like having baths or getting her nails cut, but hey – I was sometimes a reluctant bather when I was younger. It was rather odd, though, when she cried and cried at a first birthday party. All the other little one year old girls were in their element at this gorgeous fairy party. I remember leaving early, on the point of tears myself.
Do you remember, Autism, she was very slow to walk and talk. We didn’t want to be over-anxious parents. And because, after all, people develop in their own ways at their own rates. But, at 15 months old, the physiotherapist (she still wasn’t walking, or even sitting by herself) recommended that we see a speech therapist.
This lovely lady, who would also assess our youngest child, many years later, asked how we knew our girl was hungry. It was then that we suddenly realised our beautiful daughter didn’t communicate at all. She didn’t point, tug or cry. She was happy in her own little world, which we regularly visited to make sure she was properly fed, cleaned, cuddled, read to and played with.
Autism, we didn’t know about you then. But we began looking for you.
I remember buying a book from the Royal Children’s Hospital after yet another doctor’s visit. There were so many doctors back then, I’ve lost track. My daughter was about 19 months old and having weekly speech therapy. We had finally clicked that she wasn’t just on the slow end of the bell curve for babies – she was on one of her own. Then I read that book, Unravelling the Mystery of Autism and Pervasive Developmental Disorder by Karen Seroussi. We still have it.
It was a revelation.
I remember reading in bed in the witching hour of a cold winter’s morning. I was nursing our new baby boy, achingly tired and with itchy eyes yet compelled to read on. Autism, I began to recognise you for the first time. I realised that you were the different developmental curve that my daughter was following.
What I didn’t realise was just how inextricably entwined you were already with my family, and would be again, with this new baby boy and one of his brothers. Our lives would forever be on a different trajectory.
Autism, I know that you are complex and individual. You are not a single set of behaviours or deficits, that clinical “triad of impairments”. Those who live with you gain unique insights into the world which I can never experience. And yet… Autism, you do sometimes make life difficult and overwhelming for the people I love.
I don’t like to call you a “disability” – you are a “different ability”. Yet, when my daughter cannot keep her eyes open so that the optometrist can properly assess her vision, or nearly misses a tram because she had to move a leaf from the middle of the path to the side, frankly, you are disabling. When my boys want to reach out to friends but are perplexed by body language and hidden meaning in conversations, their pain is also my pain. You’re not helping.
Autism, when you cause my children stress and confusion, anxiety and fear, the result can be behaviour that’s hard to deal with. I worry about your rearing your head in a difficult situation where others mightn’t understand you, and their responses only make matters worse. It’s really hard for me to say this, Autism, but I believe in honest communication. Sometimes I do find that you disable.
I’m sorry. Just as you work on strategies to try and understand me, I work on strategies to try and understand you, and to help you understand me. I know it’s hard for both of us at times. It’s often tiring. Sometimes I feel that I never get it right. Sometimes I feel like giving up, although I’m stubborn enough to know that I never will!
Other times I’m patient enough to play the long game, to plant the seeds and keep on watering. I have faith that, unseen by me and perhaps even unrealised by my children, the seeds are sprouting and, with constant, tender care, will one day blossom.
Yet despite this, Autism, you can be empowering. You give my children such an eye for detail. They have prodigious memories. They can see patterns that no-one else notices. I envy their powers of concentration. I wish I could ignore the world around me – dishes, washing, needs of others – and retreat into my own little world at times! They are loyal and loving. Even when I might be feeling most unloved and pushed away, they have their own ways of coming back when the whirlwind has passed, and showing their affection.
Autism, sometimes it feels that you rule our lives. But here’s a gentle reminder: don’t get too big for your boots. You are part of my children. But my children are also more than you – more than the sum of their parts. You’re one of many things that define and mould them. They have their own personalities, interests, motivations, hormones. Sometimes they’re surly and bad-tempered simply because they are teenagers, or haven’t had enough sleep! I blame technology for that – you can’t take credit for everything!
Actually, Autism, I must thank you. I think that you’ve made me a better person. With you in my family’s life, I think I’ve become more understanding and empathetic. Yes, I can still be grumpy and impatient, judge as quickly and as wrongly as the next person. But overall, I think that I am much more open, more patient, more accepting, more trusting of a steady, consistent approach to bringing about change.
Autism, through my children, you have taught me different ways to view the world. You’ve taught me that there is value in so many things. I’ve learned to appreciate just how many steps there are in the simplest tasks. Forget tying shoelaces – just putting on a school bag the right way can involve steps that I never knew existed!
Autism, thank you for reminding me of the joy in the small things. Thank you for reinforcing the value of unconditional love. I hope that more people come to understand you better. Certainly, more people know about you than when we first crossed paths. That’s a good start.
I guess, Autism, we’re on a lifelong journey. Corny? Sure, but it’s true. We’re always learning about each other.
Thanks for being on the road with me.
Jennie.
