Autism Awareness Week: Being autistic doesn’t define who my brother Joe really is

Tom McCooey and his little brother Joe
Tom McCooey and his little brother Joe

ASK a 12-year-old boy what their favourite place is and odds are Alton Towers would be pretty high on the list.

Ask a 12-year-old boy why Alton Towers is high on their list and a lot of answers would brim with details of white-knuckle rides, over-sized colas and clamouring for a seat next to their best mate for the on-ride photo.

Sights, sounds and urgence are factors everyone has to deal with - but with Joe the experience is vivid enough for him to seek ways to cope

Chances are they won’t care that Alton Towers opened as a theme park on April 4, 1980, it was bought by Merlin Entertainments from the Tussaud’s Group in 2007 and the service station we stop at on the way there is a Welcome Break - which operates 35 motorway service stations in the UK.

Meet Joe, the 12-year-old boy in our lives.

Joe likes singing, collecting old Beano comics, Henry hoovers, making videos on his laptop and is obsessed with dates.

He dislikes unexpected noises, changes to plans at short notice, the sound of babies crying, bananas and ride-on machines outside of shops.

Joe was diagnosed as being on the Autistic Spectrum in December 2014.

But being Autistic doesn’t define who Joe is.

People may look sideways at the weird kid I am standing with when we are out - and there are times I have thought a flashing neon sign above Joe’s head reading ‘Autistic’ might help people understand when he gets stressed and panics, or when he gets excited and shouts in WH Smith: “Tom - look at this Pokemon book - I bet you had one of these when you were my age didn’t you!”

These shopping trips always include a visit to CEX. Joe will have me in there for up to an hour at a time showing me DVDs he already has, authoritatively telling me their release dates, which company made the films and their precise ratings on rottentomatoes.com.

Order in the chaos of Saturday shopping.

Sights, sounds and urgence are factors everyone has to deal with - but with Joe the experience is vivid enough for him to seek ways to cope.

In a shopping centre, we probably don’t take much of our environment in, other than making a beeline to the specific shop we want.

Joe hears individual conversations, shoes clipping on floors. The smell coming from the coffee shop isn’t generic - the smell of chocolate chip cookies wafting through the air gives him something to look forward to.

He sees a sign for Vodafone, (which changed its original logo, in use since 1980, in 1997). He sees the man canvassing for TV customers isn’t wearing a tie but he was last week.

He can see that the Waterstone’s display has changed since the last time he was at the shopping centre.

Familiar senses, such as the smooth feel of a clothes label offer safety in this environment - as does the smell of a comic, or his own repetition of an advertising phrase he has read, (a characteristic known as Echolalia).

We also have to be mindful of Joe’s thought processes in such situations.

If, for example, I told him to ‘get a wriggle on’ when my tolerance for the CEX DVD lesson had expired, he would look at me confused and would probably wonder why I wanted him to wriggle.

It doesn’t rain cats and dogs. It rains water. His literal interpretation of language can be very funny at times, but it means he doesn’t understand jokes, and he can’t lie.

This is because there can only be one truth.

If Joe ate a bar of chocolate I had left on the side for later, he couldn’t pass the blame.

The infinite possibilities stemming from a single lie would be too much for him to bear thinking about and he gets really frustrated if you tell him something he knows not to be true because his concrete way of thinking isn’t flexible.

Despite presumptions, unlike some people with autism, Joe can’t draw the inside of the Sistine Chapel to scale and down to the last window from memory and he is terrible with maths. Some can do all this - and it’s great - but autism doesn’t automatically equal virtuoso foot pianist.

What he does is grasp any piece of technology with ease and performs in front of people without fear.

And he turns his headphones up to unreasonable levels, he minimises his laptop screen when I walk into a room and is developing a sarcasm which remind us all that he is becoming a teenager - and a brilliant one at that.