Danielle

Ben

George

George

The world can be an unpredictable, confusing place for autistic people, and that makes a set routine crucial for getting by. So when something unexpected still happens, it can feel like the whole world is spinning out of control.

George explains what it feels like to experience unexpected changes, which is a common difficulty for autistic people.

George 

My name’s George and I am 21 years old! I have a diagnosis of Asperger syndrome, which I received when I was 5 years old. This was first noticed by a teacher when I was at nursery, who told my parents she thought some of my behaviours weren’t quite typical!

I’m in my third year at Durham University, studying English Literature and Spanish, and I am currently on a placement year abroad in Bilbao, teaching English in a secondary school. In my free time, I love music and I’m always trying to find new bands to listen to!

I also run a group which campaigns for financial accessibility for students, lobbying for better bursaries and support for students in financial difficulty. In the future, I would love to be involved in campaigns and activism, particularly regarding autism and in the sphere of mental health. 

I think that autism needs to be so much better understood as a spectrum disorder and that people are affected by it in different ways.

Once more people know this, I’d hope people would help those with autism to overcome any obstacles they may have so they can feel valued, because currently too few people with autism are. 

Processing time

I occasionally need extra time in processing information given to me orally, particularly if it isn’t something I am expecting to hear. In my most recent Spanish oral exam at university, I was asked to prepare presentations of two videos, though I would only be told which presentation I would have to give seconds before I was expected to present.

Though I had properly prepared for my exam, when I was told which presentation topic I was to give, my brain couldn’t quite process what it was meant to do. I couldn’t order my thoughts in a way that helped me to speak, and then I began to panic as I wasn’t speaking and thought I’d fail my exam.

The only way I can vaguely describe it was an intense feeling quite similar to stage fright, as I just couldn’t remember anything and I wanted to be swallowed up!

After a few seconds of silence (though it felt like forever), I managed to begin giving my presentation, though I felt really on edge for the rest of the exam, which I think affected my performance. For me, I always find that if I need to ask people to repeat things a couple of times, this normally helps me to process all of the information – but some people misunderstand this as me not listening, which is not true and very annoying!

(As a disclosure, Durham aren’t aware that I have Asperger syndrome – it was only after this had happened that I realised that this was the reason why I froze during my exam.)

George

Unexpected change 

Sometimes I have real trouble when plans change at the last minute, particularly when I’m travelling. I remember on my first day as a volunteer with The National Autistic Society, the Northern Line tube I was on was stuck in a tunnel for over 20 minutes.

It really stressed me out, as I was really anxious I’d be late for my first day in the office and that everyone would have a bad impression of me.

Also, I felt quite on edge and panicky as the route was unfamiliar, so couldn’t instantly figure out an alternative route – and there was no phone signal or internet to check! Luckily the tube eventually started moving and I managed to arrive at work on time, though it was still very stressful! 

Whenever something unexpected like this happens, I always try to make sure I have an alternative route planned that I can take to help me feel calmer and more relaxed. If I do encounter unexpected changes like this, I try to ring someone I know who is familiar with the area (family/friends), to check that the alternative plans I have are appropriate. They know sometimes I get panicky, so they always try to calm me down if I seem stressed!

Make a pledge

Danielle 

When was the last time you felt truly overwhelmed by an emotion? Fear, sorrow, anger, confusion? When was the last time you felt like there was honestly no one to turn to, no way to make it better, no path back to a place where life made sense and the world kept turning?

For me, I suppose it was when we received my son’s autism diagnosis. For a long time, nothing could make it better.

For a long time, I wanted to rail against the world – scream, shout, tear down the sky.

I wanted answers, to beg God, the universe, someone, to tell me it wasn’t true, it was a bad dream, or even just assure me we would all be ok in the end. But no such assurances came. No one can tell me what the future holds.

Danielle with her son, who is on the autism spectrum

I got up in the morning. I went to work. I played with my children and put them to bed. I loved them, as I always have. The outside world was just as it was before. The internal world was spinning out of control, the internal voice that desperately pleaded for things to be set right, for this awful, churning bruise in the pit of my stomach to be taken, for the tightness in my throat to melt away.

And eventually, those feelings did subside. They never truly disappear but they became quieter, manageable. We come to terms with things and learn to accept them. I do not know what the future holds for me, my son, my family. But I know we love each other.

I know my son will be what he is meant to be and I will help him get there. That is enough for now.

Now imagine this.

There are three fluorescent lights on each side of the room. One light from the set on the left has stopped working, so the bars of light are uneven. Yesterday they worked and the bars were exactly the same length. Today they are different. How do you feel?

There is a picture in a book of a small child in the middle of a road on their own. You have been taught that small children should really ask for an adult’s help when crossing. How do you feel?

You always turn right on a certain road to visit the supermarket. But today, although you are on the same road, you are going somewhere else and so you need to turn left. How do you feel?

There are numbers in a book but they do not follow in sequence because they count different objects on the page. They are just scattered – a three here, a five there. How do you feel?

Autism parents and professionals often discuss the idea that children with autism ‘need’ or ‘respond well’ to routine.

When you experience an autistic child’s desperate fear and confusion when faced with the unexpected, this description seems so inadequate.

My son’s way of viewing the world is constrained by a rigidity of thought and action that you can only really understand by knowing him, loving him.

Some days a big change, something we had all been dreading, will seem not to worry him. Other days, the grief and heartache of a different spoon can make him huddle against me, racked with sobs, imploring me to make it better. Sometimes I can make it better. Sometimes I can just fetch the other spoon.

But sometimes the light is broken. Sometimes, the other spoon isn’t there, we have to turn left, and the words and pictures in the book are set and cannot be changed.

For him, a different route, a pattern disrupted, a rule broken, a turn of phrase slightly changed – they can make his world spin out of control. They can feel, to him, like finding a lion in the living room. He is so young and the world is so new, so frightening to him – as it is to any young person finding their way. And so his turmoil cannot not stay internal, like mine would, like yours might.

He rails against the world. He wants to tear down the sky. An uneven light can make him feel like the universe is wrong, wrong, wrong. I see it in his huge blue eyes, brimming with tears.

He cannot understand why such an awful trick is being played, why the world is so unpredictable, so disturbing.

If you saw a child tantruming on the street, refusing to go the way their mother asked, flailing and kicking in anger and frustration, would you think they needed clearer expectations about how to behave? How about if that child were old enough to be past tantrums? Seven? Eight? Nine?

If you saw my boy, sobbing, screaming in a coffee shop because he wanted a chocolate muffin and there were none left, would you think he was spoiled? Would you think that I had indulged him too much, given him too many muffins, not been strict enough?

Now remember that feeling. That desperate, overwhelming emotion – the one where you were lost, had no one to turn to, desperately wanted the world to be put back where it should be. Remember what it is to be full of fear and feel alone.

Remember that feeling and catch a glimpse of the lions in the living room.

Remember that feeling and be kind.

You can read more excellently written blogs by Danielle about being an autism parent at Someone's Mum.

Ben

Jo Wincup's 15-year-old son, Ben, has a diagnosis of Asperger syndrome. They live in Seaton Delaval, Northumberland.

I was so grateful that I was in floods of tears.

"Over the past 15 years, my family has almost got used to strangers staring and making comments – it still hurts but we've grown thick skins. But we've also seen the difference that public understanding can have. The kindness of one stranger, four years ago, still sticks in my mind and helped us through a very difficult time.

Jo and her son, Ben, who is autistic.

"After a trip to the cinema, we went to a toy store but Ben became upset when they didn't have the exact bear he was looking for. All children at that age would be disappointed but his autism means that this can quickly escalate to a meltdown. So we quickly started walking to the nearest exit so he could get some air and calm down.

"But the crowds, bright light and range of smells became too much and he became overwhelmed. Ben lost control just as we left the shopping centre and arrived at the bus area and he started kicking me, shouting and swearing.

"People were queuing for buses and started to stare, some even said really hurtful things. I can't quite remember what they said but it wasn't nice. This upset Ben even more and he ran off into the bushes. I went after him but he refused to come out, shouting that people were staring at him and continuing to swear at everyone around him.

"I just wanted to cry, for the ground to swallow us up.

Jo and her son, Ben

"Then I heard another voice from the crowds, saying something along the lines of 'What are you doing? Do you not understand? Have you not heard of autism?' The stranger made her way over to us and knelt down before Ben. I was worried he was going to kick her but she managed to calm him down and helped us back to the car.

"I was so grateful that I was in floods of tears and wasn't really following what was going on but I remember her saying she worked with autistic children. Still in a daze, I thanked her and must have driven off. It's still one of my biggest regrets that I didn't ask for her name and stay in touch.

"If she's reading this, thank you so much. You'll never know what a difference you made to us, just knowing that there are people out there like you who understand."

The best way for an autistic person to deal with unexpected changes is to, wall, expect them! So if plans do change, let them know in advance. A little notice and understanding can go a long way. What will you do to help autistic people?

Make your pledge