In June 2012, aged 6, L was finally diagnosed as being on the autistic spectrum. My feelings at this point were strangely relieved and happy that we had come to a conclusion. Of course, we hadn’t. This is just the start. Or rather, the end of the beginning.
As I said in my introduction, Autistic Spectrum Disorder (ASD) is not a disease with a defined set of symptoms that can be treated with a simple pill. Instead it is a condition specific to each child. It cannot be fixed at any point on a scale or defined in any way which is fixed.
My feelings were of relief and satisfaction because we had struggled for 2 years to get to this point. L had long exhibited symptoms of strange behaviour and throughout my entries I will regale you with these tales of our experiences, but they were specifically centred around having difficulty in social situations and if something wasn’t right he would have a throw-down super tantrum, regardless of whether it was a small insignificant thing, or a major problem. The reaction was the same. Initially this would be with children invading his personal space, or not playing by his rules in a game, and his reaction would be to bite or scratch the other child. I am pleased to say we have managed to amend this behaviour a little to remove the physical harm element in most cases, but still, everything is black and white. Right or wrong. Good or bad. This has been my overriding experience of dealing with L’s behaviour. He is destined to live a life without shades of grey in between. Without truly understanding compromise or negotiation.
Now I am sure that this will change in the future, that he will learn the benefits of compromise and that there are scales to things, however he will not learn these naturally like the rest of us may do and instead will need to learn the logic behind why behaviour has to be amended to the situation. Accepting something you don’t like without saying anything, complaining calmly, being grumpy, shouting, shouting and waving arms about, storming out in a huff. Think how many different methods you employ to express your dissatisfaction with a particular situation and how you gauge the right weapons to employ depending on the situation. The social rules you learned in your very early years. It is this which L finds most difficult.
I will go through the process we followed to get this diagnosis in a future entry, but to me it seemed to be hampered by the fact that L had no problems communicating. In fact he has always shown very good verbal skills. Talking shortly after his first birthday and using full sentences by 18 months old. He is honest (brutally so, again perhaps as a result of his condition) and understands what has happened and why following an incident. To some he may be seen as uncaring perhaps, but again this is not the case. He is loving, cuddly and happy to hug and be hugged. Throughout the diagnostic process, the assessments and tests seemed geared towards having difficulties in speech development or communicating, but this wasn’t the case with L. This seemed to make the process all the more difficult.
I am hoping that through this blog I get across the message that L’s ASD is not what I would describe as acute or severe. It does not suggest he will not be able to live a normal life, whatever that means and it does not suggest I am in any way disappointed with my son. Crikey, that seems a strange thought to have. I would never be disappointed in what a wonderful child I have, but we pursued the diagnosis because we wanted to learn how to manage him, and ensure his school likewise has access to the necessary resources to do so as well.
So now we had a diagnosis to explain this behaviour and I was, frankly, elated.
L has been diagnosed as being on the Autistic Spectrum. A collection of symptoms and conditions which are all linked by a similar set of experiences in terms of their relationship with social development, communication skills or cognitive processes. The conditions made famous by films and books are also a part of the same spectrum. Rain Man’s Dustin Hoffman playing the Autistic Savant, Asperger’s Syndrome made famous in the Curious Incident of the Dog in the Night Time by Mark Haddon and many more. These conditions are part of the Autistic Spectrum, but the symptoms in these cases are consistent among all people with that specific condition and therefore they can be pigeon holed with a precise name. For the vast majority of people on the Autistic Spectrum however, life is not living in a pigeon hole, it is living a life of pick n’ mix symptoms and behaviours. Wondering whether each tantrum or grumpy face, each reaction to being told ‘no’ is just a ‘normal’ reaction to something, or is this an ‘Autistic’ reaction caused by his condition? The answer of course is both. They are intertwined. L is a boy growing up, maturing and living his life and everything he does is as a result of everything he is.
So how do we deal with that? Well, the same as we do with his little brother H, but we just need to treat him as an individual. The same as we do with H.
Life isn’t easy, we are just presented with different challenges along the way.