My Child Is Autistic

CHAPTER ONE – HOPE

The purpose of this book is to give hope to parents of children on the autistic spectrum.

The first thing I remember after the horror and pain of being told that my son is autistic was the huge sense of responsibility I felt to somehow reach this child. I remember the million questions going through my mind. How would I get help for him? Who would teach him? (I certainly wasn’t equipped to do so.) Would he ever know me and love me? Would I ever know him? How was I going to tell others that he is autistic? And how was I going to watch their faces as they struggled to find something appropriate to say to me in response? How was I going to give up all the dreams that I had for this little person who had come into my life? How was I going to be the amazing parent that I had hoped and dreamed I would be?

The various specialists I met after the initial diagnosis were all very sympathetic, but they were all grim – as if this were the worst news you could possibly give a parent. At the time it did seem as though it was. At the time there seemed to be nothing positive about my son getting this diagnosis. Yes, the specialists were all kind and supportive, but there was no doubt in my mind that they felt sorry for us, that they believed that there was nothing but years of struggle and hardship ahead for us. They were very clear that life would be difficult. I think they felt they needed to put this across. They needed to make sure that we would not be in denial and have any false illusions that life would be rosy or happy.

We were told that there was a course we could go on. It lasted a few weeks for a couple of hours each week. They were kind, the people who ran the course. They tried to provide as much information as they could about autism – the difficulties and problems we would face. Every meeting was depressing and spelled out a life of hardship with examples of scenarios we would encounter. It seemed important to them that we accept what was inevitable, for ourselves as well as our child. That seemed to be the best way forward.

I am not an expert but simply a parent who feels, dreams, hopes and fears. Now my son is eight. We are still only at the beginning of our remarkable journey, but I want to tell you that it does not have to be doom and gloom if you get the diagnosis that your child is autistic. I want to tell you that yes, there will be difficult times, but there will be very happy and exciting ones too. I want to tell you that your child is not less of a person just because he is autistic. I want to tell you to keep hoping. I want to tell you to keep dreaming. I want to tell you to listen to the ‘experts’, take it all in, follow the instructions that work for you, but above all, keep the hope and go for all the dreams you planned for your child before you found out that he was autistic.

I am aware, as with ‘normal’ children, that every child is different. This account does not mean that I think that every child diagnosed on the autistic spectrum could achieve what my little boy has achieved. I have met, have read about, and have seen children on the spectrum who are locked away in their minds. I know there are thousands of parents out there doing anything and everything to set them free. This book is simply about how we came from a diagnosis of doom and gloom to one where we now see endless possibilities for our son.

I had no intention of writing a book on autism, as I am just a parent of an autistic child, and perhaps I have been lucky in how my son has developed. But then again, perhaps it was the combination of things that we have done that has made life happy again. Something happened a couple of days ago that motivated me to start this book. We were at the zoo entrance queuing to go in, my husband, my son and myself, and there was a mum with her son looking very distressed. She was upset that the queue was so long, and she asked us if she could cut in as her son was upset. Not a very ‘English’ thing to do, but one look at her face and I saw all the emotions, the pain, the anxiety that once were a permanent feature on my own face. Her son looked a couple of years younger than ours. He was agitated, unable to stand still, and she was constantly trying to hold on to him and calm him. It took me back a few years, and I just wanted to reach out to her and say something reassuring.

I couldn’t find the words. I could only tell her that she could jump the queue. It was so obvious to me that her son was on the autistic spectrum. It was so obvious that she was upset and embarrassed about the situation. It was so obvious she was grateful that somebody was kind to her.

At that moment it dawned on me how difficult it is to help anyone in that position. How difficult it must have been for anyone to help me when I was struggling, upset, and angry with the world for not helping. What could I say to her? I could tell her that I understood – that I had been through it all. But could I really do that? What if she was not at the point yet where she had got a diagnosis and accepted that he was on the spectrum?

If she did already have a diagnosis, maybe I could reassure her by pointing to my son and telling her it would get better, but how could I, when I did not know that for sure? I did what everyone did to me when they were the observers. I just watched the child, recognised his mum was struggling, and did nothing.

That was the day I decided that maybe I could write this book and maybe it could help others who needed hope. Maybe things that had worked for us could work for other parents of children with autism, so they could try them out rather than feeling they must merely accept that nothing can be done.

I shall spend the next couple of chapters explaining a little about our son and what we went through at the start of this journey. I expect many of you will be able to relate to some of the things we experienced and felt. Some of you will say that there are no similarities between our son and your child, but I am guessing the emotions you feel will be similar to ours. The later chapters will be about how we decided to proceed with the advice and the information we had. I hope that, even for those of you with different experiences and hurdles to face with your children, this book helps you deal with some of the questions and choices you are faced with. I believe that every child is different and there are no right or wrong choices, just a whole lot of decisions to be made and very little information for guidance. So here’s my effort to try to fill in that information gap a little.