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We're going to Amsterdam instead

Our journey with Autism

by Mark Arnold, Additional Needs Ministry Director, Urban Saints, with thanks to Emily Perl Kingsley

Imagine that you are going on a journey to Rome. You know what Rome looks like, the Coliseum, Sistine Chapel, St. Peter’s Basilica, maybe your friends have been there before and have told you all about it; and you know how to get there, you’ve got your ticket and you’ve boarded the airplane.

Imagine now that after the airplane has taken off, the Captain speaks to you to tell you that actually you are not going to Rome after all. You are going to Amsterdam instead.

 

Now Amsterdam is nice, tulip fields, canals, windmills, and although you don’t know it as well as Rome, you can accept going there instead. After the initial shock, as long as you are prepared to adapt to a new location and new things to see, you can still have a fun time.

It’s a bit like this when somebody sits you down and very calmly, very sympathetically, tells you that your child has been diagnosed with Autism. At first you feel numb, in complete disbelief, utterly shocked, but bit by bit the consequences of what you have just been told start to sink in.

We all have dreams for our children, and we all want the very best of lives for them. We look at them asleep in their cots and image them receiving their honours degree from a top University, scoring the winning runs in a nail-biting Ashes series, finding a cure for a terrible disease, or blissfully happily married with children of their own to coo over. We all start off on that journey to Rome, and know exactly what we want to see along the way and when we get there.

Autism changes many of these dreams; it is a lifelong condition. It affects autistic people in many ways, but generally children with Autism have greater difficulty with social communication and interaction, and can lack social imagination. There can be additional challenges for children with Autism to face including learning difficulties or digestive disorders.

As a parent with a child with Autism, we suddenly found ourselves going to Amsterdam. James was two when we received the diagnosis, he is a teenager now and coping very well with his condition. We have learned an immense amount about a world we never realised existed until our journey changed. There are more children with Autism (or Autistic Spectrum Condition - ASC) than you might imagine (perhaps one in every eighty), and through the various contacts we have built up along the way we have learned from the experiences of others as they go ahead of us on their journey – we are not alone!

The most important thing we have learned is to be positive. It is easy to sink into a pit of depression and give up, but that is not going to help either you or your child. By being positive, focussing on the good things that happen (and they do!), and looking for the best ways to help your child get the most out of life, you find that Amsterdam is a pretty good place after all.

Now when we look at James asleep in his bed, we imagine him being able to talk to us, being able to use the talents that lay hidden at the moment, being able to contribute to society in a positive way, being as happy throughout his life as he is today. It’s not the same dream we once had for James, but it’s a dream that is precious to us, gives us hope, and something to aim for.

There are still tough days, but now we can get through them and continue to focus on helping James to realise his potential. Rome would have been nice, but once you get used to Amsterdam you find it’s very special in its own way as well.

In this section of Energize you will find a series of articles looking at some of the more commonly found conditions that some children and young people journey with today, including Autism, Asperger Syndrome, ADHD, Dyslexia, Learning Disability, and more. The series will help you, as children’s and youth leaders, to understand these conditions and be better placed to support all children and young people, and their families, as they engage with your group.

I hope this ‘parent's view’ will help to set the scene for this series, and help you to understand that each of these children and young people are precious and deserving of our very best care and support. Let’s go on the journey to Amsterdam together …