Our autism journey: seeking a diagnosis
I was not sure how to have my son officially tested, so I asked around and received varied but useful advice. The two main conclusions I came to were that I could either go public or private. Public meant I needed a hearing test, a psychologist report and a Paediatrician just to be put on the wait list. I have been told this process can take up to two years with at least a six month wait to even be seen and I wanted to get the diagnosis before preschool. So I made the choice to go privately.
I spoke to my GP who gave me a referral to my psychologist of choice. I did this research in advance and asked for many opinions and recommendations. I contacted the psychologist who by some miracle managed to fit me in that day due to a cancellation, otherwise the wait would have been six to twelve weeks which is considered a relatively short wait even for the private system for a first appointment. The first appointment took about two hours and we spoke about everything. At this point she agreed that I was probably on the right path and that we could proceed with the diagnosis challenge. This involved another appointment where we went through a written interview. I was given all the questions to answer at home in my own time which I found useful as I could consider my responses carefully and then the appointment to go through them together. This is not done by all psychologists, but it also saved a little money. It took me a few months to complete the questions, but I got there and after the paperwork was complete, we moved to the observations. The first was a two hour observation at pre-preschool and the second was an in office observation.
The diagnosis does not change who he is, it just opens doors to help and understanding.
After all these criteria were complete, I obtained my 23 page report and a completed diagnosis. This report gives me access to most of the help available, though to access the FAHCSIA grant I need it signed off by a paediatrician whom we are seeing at the end of November. All in all the process cost me around $1500 spread over about 6 months. It was not until my third appointment I discovered I could get a mental health plan for my son and access some rebates from Medicare. I originally asked one GP about it who insisted it could not be done, however both the psychologist and a staff member at Medicare said it was indeed possible, so I pushed. I found I can claim up to six appointments with a psychologist prior to diagnosis.
So, now what?
Now we work through the “now what?” phase. I have had an appointment with Autism Aspergers ACT which was useful and informative, providing information on who to contact and what therapies to consider as well as what services are available. Autism is now deemed worthy of a disability parking sticker due to the nature of meltdowns and the lack of understanding of consequence and danger. I have met with his preschool teacher for next year and am confident that he will find many strategies to help Alex develop the skills he needs along with other early intervention.
Many people assume that this is all confronting and daunting. For many parents it is but personally I take on a different view. I cannot change my son and for the most part, I would not. He is a loving and funny little boy with a contagious laugh who loves tickles and cuddles and is happy to just curl on the couch with people he loves to watch TV. Since he was born people have always been drawn to him for some indefinable reason. He is an amazing spark of light with eyes that shine bright with enthusiasm for life and learning. We have our challenges and times when it’s harder. When he runs off and scares the life out of you or when you’re changing the 5th wet pair of pants for the day; or when his two year old sister communicates socially better than he does. But every day he amazes me with something he does or says. Sometimes because it shows how much his phenomenal brain absorbs and sometimes it’s little things like being told “I love you” or actually telling me something that happened that day and knowing it’s not prompted or scripted.
When asked how I feel about it all I usually have one response. If he was going to be at home with me for the rest of his life, I would not want to change a thing. But he will be going to school and out into the world so he needs to learn how to deal with it and how to communicate within it. There will be challenges along the way and times when he may be bullied or isolated, but we will always be here for him and do everything we can to give him the tools he needs to hopefully be the best person he can be and be happy with who he is. The diagnosis does not change who he is, it just opens doors to help and understanding. The label is not who he is, but it will help others understand him and in time it will help him understand himself.
Comment on this article at the Essential Baby forums.