My husband and I have two autistic sons, 18-year-old identical twins Nathan and Curtis. Taking them out and about is a big challenge.
Both boys have severe learning difficulties and are non-verbal. Curtis also has attention deficit hyperactivity disorder, obsessive-compulsive disorder and was recently diagnosed with epilepsy. They are both 6’2” – not exactly kids any more. Neither likes busy places, sudden movements or unexpected noises like traffic or a baby crying.
Preparation is always key. We use a “first and then” approach, keeping it very basic and visual, so that they know what is supposed to be happening. I might tell them: “Shopping first, then we will come home.”
We are quite good at reading their body language, but the fact that they are non-verbal can make it hard to know how they are feeling. If you or I have a headache and don’t fancy going somewhere, we can say so and be understood, but Nathan and Curtis can’t. That is difficult for them as well as us.
They have very different personalities as well, which can make things more complicated. Nathan is very laid back, a gentle soul. He loves listening to music. Curtis can’t sit still for long and likes to be running about. He is more sociable but he struggles with things being beyond his control.
We have taken them to weddings and birthday parties but Curtis in particular has a difficult time, so it would usually be just one of us with Nathan. I sometimes take Nathan to National Autistic Society events with music or a disco, which he loves.
After 18 years I don’t care much what other people think of us. It’s their problem. But I realise that a public meltdown now can be shocking. They aren’t cute little boys any more, but of course their disabilities haven’t gone away.
The ideal reaction is for someone just to ask if there is anything they can do. Often there isn’t, but sometimes just waiting while it passes, making sure everyone is safe, means a lot.
The boys go out separately with carers every week – two to one – which allows them to do the things we can’t manage otherwise. Curtis enjoys bowling, going to the park or playing ball. Nathan loves swimming and going in the jacuzzi.
We have had some wonderful reactions. People just saying hello is great. Recently Nathan was out with his carers in a restaurant and the waitress came over to say someone had paid for his meal. That was amazing.
It is important that they get out without us. They have to pay for things and thank people, and practise using Makaton sign language. All this is fun but it is also essential for their day-to-day life as they get older. They need to develop as much independence possible.
We have to be flexible. They are already excluded from so much and it is easy for us all to become isolated. But we don’t want to put them in situations that they would find stressful. So we choose quiet times – for shopping or bowling for instance – and if it’s a bit busy, or a baby starts crying, we have to leave. Eating out would usually be fish and chips outside or in the car.
Going out walking is the thing we all like best. Most weekends we go down to the beaches nearby. We go off the beaten track. It’s safe for Curtis to run around, Nathan can relax and there’s no stress. They have the most beautiful smiles, so I know they’re happy.
Find out how you can help: the National Autistic Society is asking everyone to make one small change to help reduce the overload for autistic people.
To find out more about autism and the change you can make, visit autism.org.uk/tmi
