If I Could change the world

Once we were told about our sons diagnosis, I was quick to search the Internet, get all the latest books and try and update my knowledge. I not only wanted to know what the challenges he faced were but in how we could do everything in our power to equip him with the skills he needed to get on out there and live the life he wanted. As an Occupational Therapist I had previously worked with patients with Autism and Aspergers, however when it’s your own son it is no longer ‘fascinating and educational’ to study (like it was when I was at University) but a deeply personal and vital area to understand fully. But what I very quickly found out was that the world can be so inhospitable to those on the Autistic Spectrum not only due to the particular ways those on the spectrum experience life, but because of the bias and ill informed people that are out there too. My first experience of this came only one week after our son received his diagnosis.

At the time the Specialist had said that he had Aspergers but the classification system was going through a change and that under the new system his diagnosis would actually be called Autism. The Specialist said that in the written report she would allow us to decide what we would call the diagnosis as currently both were accepted. As a medical professional I have always wanted to keep myself updated with my knowledge so I said that of course we would go with the new term. That week we were visiting Schools to find a kindergarten for our son. The world of kindergartens and education systems for our little man were new and unknown to us so we were just going with the flow as we do, and finding out as much as we could. So we arrived at the first kindergarten, filled in the paperwork and had a lovely look around. The facilities looked really great, the teachers were friendly and it was near to home, perfect. Before we left we had a sit down with the Headmistress to discuss his application however It became very clear that for this kindergarten that single word ‘Autism’ made our son unacceptable. Without even meeting him, those words written in black and white on the school form instantly put him in a little box in the head teachers head, she even told us that. Quite clearly we were told that she already had a ‘disabled child’ and didn’t need another one in her school. I am sad to say that I had no response at the time. I have frequently gone over that conversation with sadness and rage thinking of all those things I wish I had said, but at the time I was simply stunned to be faced with such a viewpoint. Once we got home I got angry and I cried. How dare someone judge my son on one word without even meeting him? There is so much more to him than that! He has skills! He is my ray of sunshine! But when I cried it was from fear of what he was to expect from that big world out there…. a mothers realization of the reality of what people can be like and an inability to protect them from that world.

Oh if I could only change that world and make it more hospitable.

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