I had suddenly found myself driving on a multilevel highway, totally unfamiliar to me. Cars were speeding behind me, below me, above me. Pressure. Confusion. The petrol lamp glowed red. I needed to get to some destination speedily, but I had no idea which of the many roads would take me to my destination. Actually, my destination was still unknown!
What I have just described is my experience with early intervention a few years ago after my son received a diagnosis of high functioning autism. Upon receiving the late diagnosis, he became eligible for a special package of funding from the government to be used by his seventh birthday. My husband and I were still getting our heads around what autism was, and yet we had less than two years to use $12000 for early intervention. It was a steep learning curve to say the least.
Seven Things I wish I had have known….
1) Before diving into the minefield of information out there, it is important to have a good understanding of the main approaches to therapy, and the controversy surrounding them.
At first, I was finding that different professionals were giving me conflicting advice about treatment. I was diving into all the different books and websites without a basic understanding of the main approaches to intervention, and the schools of thought they embodied. I was lost in it all, doing a lot of work, with no real direction.
So, I strongly recommend that, before you dive in, start by having a framework in your own mind of the basic approaches. To get you started, ‘Aspect’ (Autism Spectrum Australia) has a great table which divides the available interventions into the general approaches. It can be found here:
It may be helpful to think of the interventions in three categories:
a) Learning –based interventions
Learning based interventions can be divided into three main categories. The two main approaches are the “Behavioural” approach and the “Developmental”/ “Relational” approach. The first approach is adult-directed and skill-based and the second is child focused and relationship-based . The third approach, the “Combined” approach, manages to combine the two schools of thought, which are actually opposed to each other in many ways.
b) Biologically based interventions
Biologically based interventions include medication and complementary and alternative medicines.
c) Speech Therapy, Occupational Therapy and Psychology
Your child may need these therapies in addition to one or more of the approaches above, but these therapies, and ideas about them, may also fall into the above approaches.
2) All forms of intervention are not equal when it comes to your child
In those early days after the diagnosis, I was on a mission to find the very best intervention, not fully realising that autism presents differently in every child. Each child with autism is unique and has different strengths and difficulties, so I was wrong in expecting to find a single intervention that would be the best for my child and all children with autism. It was really a process of good background research and then trial and error.
Positive Partnerships have produced a great Fact Sheet to help you ask the right questions when evaluating whether or not therapy is suitable for your child.
3) To choose the best therapy for your child, you have to know him/her well
In the end, I needed to find the right combination of therapies for my child. I wish I had have taken more time out to really understand the information I was receiving about my child, and to combine that information with what we knew of him as his parents. In my case, I was receiving reports and initial assessments from teachers, Occupational Therapists, Psychologists and Speech Therapists. While the information was helpful, it was complex and sometimes even conflicting, and I was drowning!
Now, I have been introduced to a very helpful tool for summarising the information about my unique child. It is called ‘The Planning Matrix’, developed by Positive Partnerships Australia. Just completing one of these has made me feel that things are more manageable. Find it on their website:
4) Taking time out to critically evaluate the different approaches is essential
In my experience, I tended to dive into therapies without taking time out to critically evaluate the options. Now, I am discovering some reputable websites to help us access information about the evidence available for the particular approaches. These websites are essential reading:
5) Carefully consider how to maximise your financial resources and funding
To begin to understand what financial support is available in Australia, this page will be a great help:
A financial planner who understands families with special needs can also guide you as you begin to work out how you are going to pay for therapy in the years to come.
6) Don’t Overdo It!
I know, in our case, we put pressure on ourselves to achieve as much as we could before the special early intervention funding finished on our child’s seventh birthday. Some of that pressure came from the idea that early intervention was the be all and end all. I now know that, while early intervention is crucial, the plasticity of the brain means that I can continue to help my son through intervention at any age throughout his life.
If I were to do it all again, I would pace myself. A realistic plan for intervention should allow for rest and recreation time for the whole family, and things like travel time need to be factored in when making your choices about therapy. It is vital that you and your children are not exhausted by trying to squeeze in too much.
7) Do your best to ensure that your child knows that you fully love and accept him/her
Above all, I think we as parents need to spend time, in the midst of all the therapy, just being with our child, even trying to enter into their world, and helping them to know that they are fully loved and accepted, just as they are. Our children shouldn't feel as if we are trying to “fix” them, or that we are constantly judging their behaviour.
Well, back to where my story began...the petrol lamp is no longer glowing. We are still on the highway, but travelling at nice pace. We have more of an idea what roads will take us to our destination. We are getting to know our son more and more as we travel, but sometimes we find ourselves forced to take detours as he leads us into unexpected territories. Sometimes he takes us to surprisingly beautiful places, other times we find ourselves on dark roads in the rain. But the sun always comes out again. Our destination is more known to us now - but that is for another day.
Contributed by Erika O'Brien, guest blogger