You don’t look autistic! I get it!

What most people see is that I’m a motivational speaker, I’m a storyteller. I network, I’m on stages, I’m on the radio, I’ve been on television, I’ve worked with celebrities, and I’ve spoken for FTSE 100 companies. What people don’t see is what happens when I close my laptop.

My work brings me safety and joy because I’m using my gift, because I’m doing the thing that I do the best. And then I have to transition back into the world. What people don’t see is how debilitating I become when an alarm goes off unexpectedly.
Yesterday I was in a hotel lobby, sitting near the bar, and an alarm went off, a sound I’d never heard before, and it paralysed me. I couldn’t walk. I couldn’t speak. The pain of the sound in my body meant I couldn’t do anything. All I could do was press my index fingers into my ears and squeeze my elbows into my sides. If you were there and you looked at me, you would have seen my eyes wide, desperately trying to ask for help, but I couldn’t say anything. After the alarm finished, it took 20 minutes for the ringing to stop.

What people don’t see is that when I go to a supermarket, I am counting in my head to regulate myself, to cope with the sound of the trolleys and the voices and the disorganised way that people move in that environment. What people don’t see is that when something changes, I sometimes can’t cope, that I will walk on certain parts of the pavement, and I struggle to cross the road because I can’t judge the speed and distance of a car.
What people don’t see is that before I go to an event, I visit it before, I take a virtual tour, and I arrive early so I can regulate my body.
What people don’t know is that when I give eye contact, after a while it starts to burn, and I’m desperate to look away, and I can only think when I’m not looking at your face. What people don’t know is that sometimes I completely misunderstand the queueing structure and will look like I’m pushing in when really I’m just in the wrong place.

I struggle to read a menu. 

I can’t read a menu if I’m in a restaurant and I’m overwhelmed. Everything becomes visually blurred and I need to ask someone to read it for me.
What people do see is that I go to the same restaurants and coffee shops and build strong relationships with people.
And that’s because those spaces feel safe.
Because I know there will be days when I might come across as demanding or difficult, and because they know me, they will be kind.
What people don’t know is that I have to FaceTime my sister when I travel so that she can help me pack my suitcase, and I’m 40 years old, and I have children of my own.
I just need help for some of these basic adult things.
What people don’t know is that every night when I lay my head on my pillow, I replay scenes of the day and rewind how I could have been misunderstood, or how I may have stood too close, or talked too much, or held my body in a weird way, or lingered a bit too long.
I hear everything. I notice everything. I feel everything.
And this is a superpower because it allows me to connect deeply and do the work I do.
But when there’s no purpose for what I’m doing, it’s really exhausting.
And when I meet someone who’s autistic like me, I feel an immediate connection. This week, I met Grace. She was diagnosed late at 21 and I was diagnosed late at 30. We are both autistic storytellers and there was an instant sense of recognition between us. But when I looked at her, I felt a deep sadness because I know what she has to deal with. Because I know how hard her life is.
It is a very particular experience to be the smartest person in the room and at the same time feel the most debilitated.

It’s lonely and it’s painful. I talk about my superpower because it’s what keeps me going. But autistic people are significantly more likely to struggle with depression and anxiety.

I suppose that’s why I drop the Confidence Star off to places, because I hope that someone who’s struggling might get interrupted by seeing the star where they are.

The best way I can describe autism is that it aches.
Today is Autism Awareness Day, and I hope this gives a bit more awareness by sharing what autism feels like to me.