On my Daughter’s 18th Birthday

What the world needs now, is love, sweet love. But what it is getting is yet another post about autism. And to make matters worse, it's by someone who isn’t autistic.

But I have been trying to find ways to explain to people when they ask, “How is Hanna?” exactly what is going on. I know the answer should be, “not great, but we’ll get there.” That’s normally all people really want to hear. But the real answer is so much more complicated.

Hanna is autistic.

Yes, you know autism. That thing everyone is always banging on about now. We get it. We know what autistic means.

But do you? Because I live with an autistic teenager and I don’t understand a thing. But I do have some insight into my daughter’s life and how it’s not great and how I’m not sure we will get there.

So, here goes.

Hanna’s autism affects her in a number of ways.

1. She struggles to understand the world around her. She is good at learning. She has excellent recall of facts. She is good at following rules and logic. But she is less able to recall experiences or emotions. The world as most people know it, isn’t logical. It is nuanced and complicated. Human behaviour can appear unpredictable. And unpredictability is not an adventure or fun, it is frightening and over-whelming. Hanna is regularly over-whelmed.

2. Hanna’s world is a sensory minefield. Even a quiet room brings the excruciating sounds of the electric light humming and the itchy feeling of the fabric of chairs. Too much pattern and she gets a headache. The outside world is full of chatter, traffic and textures. Add to that the unpredictable nature of humans, it is stressful to venture too far or take in something novel.

3. She has little executive functioning (the fancy word, for organisation skills). Trying to prioritise herself, her environment, what order to do things in, is a tangled mess in her head. She cannot keep a room tidy and she has to have a routine to get through a day.

To tackle all of these issues, she has tried to enforce rules on the world and developed OCD, which makes her world scarier and less friendly, because the world doesn’t abide by her OCD rules. Her OCD is a bully.

I’m writing this to explain it to myself, but also how I might explain it to others.

Because depending on what day you catch Hanna you might see a bright, capable young woman who doesn’t fit with what I’ve just said. She passed her GCSE’s in the most difficult of situations (but has been unable to attend an educational facility in the past three years). She can hold a conversation about the state of the world, environmentalism, biology, the life cycle of a virus, the islands of the South Pacific. But she is stuck. She is stuck at home, anxious and afraid.

I know the way I have described her, probably doesn’t make sense to her. It is my interpretation of a world I don’t share.

Anyway, today she has turned 18 and after 3 years of fighting to get her the education she deserves we are still banging our heads against administrative doors. She doesn’t want to celebrate her birthday. But I want to celebrate her, and all of her fabulousness.

The world doesn’t need more autism awareness. What it needs is more compassion, care and services. It needs to turn the noise down occasionally, and the judgement off.

And I include myself in that.

But I’m learning. Recently I found myself springing to the defence of autism when a friend mis-spoke. There is nothing wrong with autism. I don't wish that my daughter wasn't autistic. She is who she is, because of the autism. And I love her. Autism makes her world a little bit harder, but the person no less valuable.

I baulk at the cheesy posts about autism that suggest it is a super-power or special gift when I have a daughter who struggles to leave her bedroom.

So, on my daughter’s 18th birthday I just want to say, I love her. It is as simple and as complicated as that.