‘My Child is so much more than a Diagnosis’

Yesterday was ‘ World Autism Awareness Day’, which was a day that I did not wish to let pass by. I believe that most people are now aware of autism, but I am not sure that they fully understand the breadth of it nor are they accepting of what it can mean. We saw the full range of autism at Joshua’s special school and saw first hand how debilitating it can be for some families. Joshua does not have a full autism diagnosis, but he certainly displays some of the traits :

I was first made aware, before he was one year old, when he attended a special needs nursery. As a baby he would vigorously bounce all the time and I just thought that he was strengthening his sturdy legs and that he enjoyed the exercise. But at that playgroup, the professional leaders pointed out that ‘something was not right’ about his continued bouncing. Once Joshua was a bit older, he demonstrated more ‘stimming’ behaviour – the repitition of physical movements, sounds or movement of objects. He would still bounce, but he would also hand flap and make a grunting noise. Again , I did not know what to call this collection of behaviours but it fits, now that I know more about it. As a small child staying at his Aunts for the first time, he was fascinated by their ceiling fan calling it ‘bidilant’ (brilliant ) and I have since read that staring at rotating objects is another form of stimming.

When Joshua was at nursery school, the headteacher arranged for him to be assessed so that he could get a statement for assistance when he began mainstream primary school, so he would be 4 years old – pre-epilepsy. That was the first time that autism was mentioned formally to us. I can recall panicking with the Health Visitor who calmly suggested that we put the word ‘autism’ aside, as she explained ‘ Joshua has enough going on already!’, so I did just that, happy not to give him any more disability labels.

It was not really until he was being assessed by Great Ormond Street hospital, when he was 12/13 that it came up again. When reading his file, they confirmed that he had autism, to which I replied that he had some traits but he had never been formally assessed. In my ignorance, I had thought that he was too sociable to be autistic, he just adores the company of people and gives great eye contact, and I thought that was one of the main issues with autism. He is not obsessive in his behaviour, coping well with change in many ways, although he does enjoy the same DVDs and music choices, endlessly. I now realise that it is much more complex than I had first thought ; there is much talk of the Autism spectrum and I thought that was about severity of symptoms, but I now think that there are a spectrum of symptoms and behaviours, and you might not display them all and Joshua certainly displays several.

But the health visitor was right, Joshua had enough going on with his severe learning difficulties, hemiplegia and epilepsy diagnosis, adding autism to that list would not afford him any more support or attention. Autism does not always accompany a learning difficulties issue, or indeed epilepsy; there is high functioning autism, where it is possible to speak, read and write and to function, in an adapted way, in society. Asperger syndrome is a spectrum condition, whereby those with the condition will see, hear and feel the world differently to other people, although they do not have the learning difficulties that many people with autism have.

I do not really know enough about autism to be expert at all, just what I have read and have seen at special schools, but it is a fascinating condition. If there are ever any TV programmes about autism, either dramas like ‘The A Word’ or documentaries, I try to watch them to learn some more.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s