Autism Awareness Month - April 19

Throughout April we will be sharing a different story each day to help raise Autism Awareness and highlight how peoples' lives have been touched by Autism and Autism Queensland in different ways.

Dee's Story

Thanks AQ for all your help, information and support! What a wonderful job you do.

I always knew something wasn’t right with this little boy who talked late. His senses were tuned to high. He hated anything that felt warm – meaning food, water, touch. He disliked many textures of foods. He couldn’t bare loud noises. His tolerance and problem solving skills were almost zero. His development in many ways was delayed. His eye contact was intermittent, his face mostly expressionless, his fine motor skills clumsy, he appeared small framed for his age, he lacked muscle tone, he fell to the ground like a rag doll when things didn’t go his way. He grunted often, before he had language, and now at times he is the master of language, (especially in a meltdown). He is 6 now and in Grade 1. For Privacy reasons we will call him Jay.
Jay came into our care at 18 months old. It was assumed that he was suffering the effects of social and behavioral indifference because of the effects of a severe trauma and that in time he would heal and mature accordingly to his own age milestones. As he grew older we had great difficulty with behaviors when our routines changed or situations were put on him suddenly. He was able to note small differences in furnishings, object placement and things that other children his age would not even respond to. His thoughts were extremely literal and he found it very difficult to have normal friendships. I had suspicions of Aspergers or something on the Autism Spectrum after seeing a program on it so I actually downloaded the DSMIV from a website and began reading through it ( thinking that I didn’t think he ticked many of the relevant boxes.) After I had noted many behaviors on the sheet I asked the staff at the Child Care Centre to have a think about his behaviors and see if any matched those on the sheet. I was really amazed to find by the end of the day the sheet was full with comments from many of the teachers and as I read the scenarios and rationales behind each answer I began to realize that this may be the answer I was dreading.
We scheduled an appointment with a well versed pediatrician on ASD – (not knowing this was the case at the time). He assessed Jay and concluded after time and much information from myself and the Child Care provider that he had an ASD. At first I was devastated and wondered what the future held for him and the rest of the family. The Dr put me in touch with and Autism Advisor and apart from other wonderful information she gave me, she also gave me a book to read that I read from front to back that night. I decided that this could be a good thing, with a diagnosis I can now do some research and begin to understand the behaviors that are so socially unacceptable. So with great gusto I embraced the fact that he had been diagnosed and set out to gather all and as much information as I could on Autism, to allow me to see the world through his eyes - I had shape shifted into a sponge – gathering as much knowledge and information as I could. AQ was the place to start, I attended seminars, phoned for advice often, did piles of internet research spoke to parents and others who were well versed in many things that I wasn’t. It really helped me separate the behavior from the child. He became my special project as I learnt to understand the meanings behind his behaviors and why they seemed so over the top, a reaction to what we thought was insignificant. I learnt new strategies and applied them daily, changed them daily to find the one that worked for each situation. He went on medication and off medications. Over and over on a daily basis I would explain to him what was happening each day and why this or that was going to change or why we were seeing a new DR etc. or why his routine was going to be different that day for whatever reason.
Last year Preschool was an absolute battle – with many changes of teachers throughout the year which did not help him to settle and teachers not understanding the characteristics of ASD fully. Oh! They tried but never really had the time to educate themselves on ASD and it was so often and easy to pass him off as another naughty boy. I was proactive beyond that, and tried to educate them, as I myself became more and more educated on new strategies and developments in ASD research. His special Ed teacher was also proactive in his plight which gave me and Jay an ally within the school. We instigated a communication book so everyone was aware of his stress levels before even getting to school. AQ did several wonderful Outreach visits through that year of preschool at our request– which helped me to validate the diagnosis to the teachers and have them hear from the professionals that this little boy sees His world very differently, that he learns differently, that he socializes differently and that he communicates very differently, ineffectively at times (meltdowns are common but less common now we are using deep pressure therapy and weighted tasks routinely ) . I say his world because that’s what it is to him. It can be seen as egotistical but to these kids that lack empathy, they have to learn this valuable social skill and many others – To them it is IN their world…That things don’t go according to plan… He is in his own bubble and will come out when it suits him, but for us to enter his bubble – we must be invited.

Dee Prior