Last week, Declan talked about coming to terms with diagnosis, from the point of view of a father of a son with Autism, in this second installment, he discusses getting support and realising the positives.
When I first began to learn about autism, I took the route I’d been programmed to take since my first day at school, ‘Ask the Experts’, a tried and trusted way of garnering information since the first cave man invented ‘show and tell’ on the back wall of his mountainside holiday home. Nothing wrong with my methodology, my mistake however was my choice of experts. Therapists, Clinicians, Professionals of every hue seemed to espouse their opinions on how to help my child and people like him to ‘Make the Journey to our World’ as it was often put. What I didn’t realize for such a long time was that the greatest living expert on how to help my little boy was living under my own roof and was sending communications directly to me every minute of every day.
My very own, wonderful, perfectly ‘normal’, autistic son. My astonishing ability to remain blind to his messages for so long is my failing, not his. A testament perhaps to the bizarre mixture of arrogance and ignorance displayed by so many of us as we seek to prove our worth by providing all the answers. Science for sure does have a role to play in helping us all understand how our bodies work. It now allows us to see into the human brain and to understand to some degree what’s going on there. It can help explain why certain sensitivities may be heightened or lessened and what stimuli might be factors. Why communications can be difficult in certain situations and even why the some of us process information differently to others.
Many experts across the range of disciplines have huge contributions to make in helping us find the best ways for people regardless of their neurology to live and enjoy their lives. They can show how a given strategy or theory should work and crucially have evidence of its success. Not just anecdotal evidence but hard facts, scientifically tested and proven evidence that what they offer is of real benefit to the recipient. Too often the benefits of a given strategy are benefits to the provider, from the ‘Miracles for Sale’ type of interventions to the ‘It’s what we do’ variety. The latter being often the attitude taken by state funded providers. For what it’s worth, I’ve found the best approach is to research the options, assess the evidence and then question, question, question. Doesn’t win many popularity contests, especially as it happens from ‘Professional Educators’, but does shine a light on the merit or otherwise of any specific approach. Technology too, has a huge role to play, from tablets/smart phones and the myriad of apps that can be employed for virtually any requirement to the most powerful and yet fundamental advance of recent times – global communications. Everybody can now pretty much talk to everybody. What an amazing tool. What my caveman ancestor would have given for that.
An enormously beneficial result of this has been the emergence in recent times of autistic people who suddenly have the means to communicate on a wide scale. Wonderfully intelligent, able and generous people who live with ASD and experience the challenges and benefits that it can bring every day. People who can now express and share their knowledge and experiences on a wide scale. These are the true experts, they always have been, in the past they didn’t have the means to reach out and help and if truth be told, their voice would probably not have been listened to by those ‘who always know better’. Today they do have the means to reach out and the impact is enormous and growing exponentially. As individuals and families benefit from their assistance, they in turn find themselves in a position to help others. No generation of autistic people in history have had the opportunity presented to those who live today – advocates with ASD who can speak from direct experience and can reach across continents. To all those amazing people who work so hard and share their experience so that others may benefit, the true heroes of my world I say most sincerely, thank you and Godspeed to your efforts. I’ve lived through the years of the Autistic Winter, it was cold there, now perhaps the Autistic Spring is about to blossom
I still worry about the future, it’s what I do, part of any parent’s job. But I don’t worry as much. Do I wish life was different, more ‘normal’? Do I wish my son’s childhood was easier, more like the one I experienced? In so many ways the answer is an emphatic yes. There’s a certain safety to be found in the middle of the herd. It’s easier being like everybody else, nowhere near as interesting but easier. I want my son to have a happy life. I want to someday close my eyes and know that he’s safe and established as a fully independent member of society. In truth, that would be more likely were he not autistic. I know my last cogent thought, whenever that might be, will be for his welfare and that worries me. But I know too that he’s better equipped to face life now than he was even a short time ago. I know he’s developing and maturing at his own pace, just as he should. His life is made easier by those who pave the way, those who educate the bulk of the population about how society can be made so much fairer for everybody without that much effort, simply by changing attitudes and mindsets. His life will be made easier when we learn to value and respect people simply for what they are, not for some standard template we decide people should adhere to.
Am I glad my son is autistic? I love my son unconditionally, I love everything about him and autism is part of what makes him who he is. So I guess I love that too. That’s quite a journey from a cold October day in St. Frances clinic Temple St. when I first heard the words ‘These results place your child on the Autistic Spectrum’
Also Check Out:
Declan Lynch: “These results place your son on the Autistic Spectrum”
