This being the first blog I have ever written, I have found it surprisingly hard to know where to start. After some deliberation, I decided upon an introduction to myself and my first, personal encounter with autism. I confess that this has been a really difficult venture as it has involved putting on paper some of the thoughts and feelings that are buried under the surface, because they are often far too difficult to contend with! In fact, although this has reduced me to tears on several occasions, it has been something which I am glad to have done. This may not be very informative, but hopefully gives an insight into my experiences and motivation.
I graduated from University with a psychology degree and an 8 month old baby to take care of. Things were looking pretty good – my little boy was growing and developing faster than I could keep track of. He said hundreds of words and phrases made cute animal sounds on request! He was a quick learner, very sociable, happy and in my eyes, completely adorable!
I was not prepared for the course of events that would follow. When he reached approximately 18 months, I was approached by my mother who told me that she was concerned that he had stopped speaking. She pointed out that he seemed to shy away from contact and that she thought I should speak to the doctor. It seems rather silly now, but my immediate reaction was anger, and perhaps what I would now term, denial. I couldn’t understand what she was talking about and thought it was utter nonsense! However, as soon as she left I carried out a few of my own ‘tests’. I called his name in an increasingly loud voice, clapped my hands and tried to engage him in any way I could, but all attempts received the same blank response. He would not look at me, or even show that he was aware I was there. My little boy no longer showed any interest in me. In fact, in the days that followed I noticed that he actively sought to avoid me. If I should enter a room and attempt to approach him, he would leave. He was locked away in his own head and I didn’t know how to reach him.
This was my very first experience of what is called ‘autism’. I am now only too aware of the devastation and pain that can accompany this diagnosis. If I am honest, I have wished repeatedly that this was happening to someone else. I have felt a sense of responsibility or blame in some instances, when trying to explain to others who don’t quite understand what is happening and want to know what they can do to help. I believe, that in some small way, I will always be trying to come to terms with the fact that this is happening to ME! This is a challenge that I am not always certain I have the strength to deal with. However, I am surprised by the strength that you find when it is imperative to do so.
Whilst the worry and uncertainty do not disappear, I have also taken so much from this ongoing experience. I welcome the changed perspective that it has given me. I have learnt to take nothing for granted. My son is now 7 and although I would never have imagined that I would be the mother of a disabled child, I have undergone what can perhaps best be described as a ‘humbling’ process. I feel that I look at things through a different set of eyes now. Whilst this perspective is sometimes glazed with a hint of sadness and loss, it is also brightened by an ever present ray of hope that I will not let dwindle.
I do not believe in a ‘cure’ or magical process that will take away my son’s autism, but I do believe that he has every right to access all of the beautiful things that life can offer. Since his diagnosis, my goal has been to ensure that I try to provide this opportunity for him. What I continue to be shocked and disgusted by are the hurdles that are put in front of us, every step of the way – from obtaining a diagnosis to receiving effective help and education. I assumed that living in Kent, I would at the very least be given information regarding any scientifically validated treatments, however, this was not the case. I wasted some potentially precious time under this illusion, until finding out about ABA, purely by chance.
I am now going to draw this current blog to a close because it has taken far longer than expected and has been harder than anticipated. When I write again, I will talk about my experience of the diagnostic process my first experiences of ABA therapy, something which has helped and continues to help my son enormously. I aim to speak more ‘scientifically’ as I write in the future and to discuss issues that are of current relevance, but I felt that it was important to give an honest introduction to myself and my personal experiences of autism, to further explain my passion for ABA.