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Making a Change

The last few weeks I've felt my client’s desperation. It’s sometimes difficult for me to walk away without feeling like I need to do more. Why is that? A number of my clients have two or more children on the spectrum and all of the parents I meet are struggling with lack of resources, funding and therapies. Either they can’t find appropriate therapies, or they can’t find the funding to do the therapies once they find them. Parents struggle enough – No one can even remotely pretend that autism isn’t a tough gig.  While the journey can be infinitely rewarding, joyous and inspiring, walking that road can be tenuous, frustrating and exhausting. It’s not so much that the children cause the frustration, but the major problems can be a system that can be roadblocks and brick walls to families being able to move forward. Getting a diagnosis alone can take months, sometimes years of attending various the Doctors, therapists and organizations. It costs a significant amount of money to pay for these practitioners. An autism Pediatrician in Australia can cost upwards of $450, Speech Therapists are upwards of $200 per hour, and Occupational Therapists are the same. While I have no problem with therapists needing to charge for their services, surely funding to pay for the diagnosis process should be mandatory. Then parents have to struggle with finding the most appropriate services for their children. In my role as a consultant I often attend Pediatrician visits and therapy visits, and I’m often dumbfounded that autism specialist services don’t even have autism friendly waiting rooms. I’ve attended Pediatrician visits where the specialist doesn’t even talk to the child, then of course the child misbehaves and the outcome of the visit is a negative one. I’ve watched parents try to tell Doctors and therapists “my child doesn’t normally behave like this” and I see the therapists/Doctors ignore the parent’s pleas. I walk away and I am not surprised, there has been no connection, so the child with autism is not going to behave well under these circumstances. They are not going to show themselves to someone they don’t trust and has failed to even notice they exist. I’ve told Doctors that I’ve witnessed our client doing ‘XYZ', only to be told that I must have a biased opinion. Not only is that insult to my professionalism, but to my integrity. In that moment, I feel a little of what parents feel every day. One of the greatest gifts I can give to parents is to understand them. To understand what they are experiencing, to understand their child, and to see what THEY see in their child. I see parents faces light up when I recognize their children as more than just a kid with autism. They often resolve to tears when I say “your child is bright. He has the ability to achieve, we just have to find what induces his desire to learn.” There is no one-size-fits-all solution to the diagnosis that is autism. I think we need to spend less time on trying to finding a cure and invest more energy spent into understanding the condition. There is a saying that “if you know one child who has autism, you know one child who has autism”. This tells us no children are the same, therefore one therapy or one intervention will work for every child.  One thing I believe autism teaches us is the nature of individualism and uniqueness. We just can’t put children in an age category, irrespective of whether they have autism OR if they are neurotypical.  All children learn differently. All children have different skills and abilities. All children have different interests. Being seven years old shouldn’t mean that the child goes straight into a typical curriculum for a seven year old. Some children will learn visually, some through hands on learning, some children learn verbally and some learn emotionally. Some children love Maths and don’t like English, some love Science but don’t like Physical Education. Doesn’t it make sense to create a differentiated curriculum to suite each child? Does this idea make the job of the teacher harder? Initially there will be more work and preparation to do, but ultimately if the child loves what they are learning, then behavior problems will diminish, motivation will increase, concentration will improve and children will want to attend school. The principle is the same for children on the spectrum. I won’t even consider a program for my clients until I’ve observed them at least once. We need to understand how children with autism learn, what motivates them and what their sensory issues are. Any program needs to be uniquely and individually tailored to that child. So I’ve veered off the topic a little, but the truth is this is a huge, varied, and complicated topic. There are so many issues to consider, but I want to return to my original purpose for writing this blog. Parents with children on the spectrum need our support. They need our understanding and they need our awareness. We owe children this.  Not only because of the benefits to them individually, but we owe it to them because as a community, we will be better off when we understand the uniqueness that is autism. I view autism through the eyes of potential and when I communicate that to parents I give them hope. Let’s make the path easier by supporting faster diagnosis methods, funding for support and therapies, and funding for community, education and professional awareness programs. In ten years we need these children to be shining with potential and to be productive, thriving members of society. Then people like Temple Grandin and Carly Fleischmann won’t be so unique. They’ll be a part of every community inspiring us all.

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