What is a parent's perspective on autism?
It is born within the heart, mind and spirit and is influenced by much we experience as a family, some joyous and some indeed very challenging. So challenging, in fact, that it tests your very core values and beliefs; as well as your willingness to persist in the face of your fears in maintaining them, as you venture forward with a 'brave' face but with 'fear' churning in your belly, on this very deeply personal journey. This journey is a marathon and not a sprint as there is no easy 'fix', although on the darkest of nights, we wish there was one. This is a journey a family must learn to navigate , without a clear map; on the road to understanding, accepting, embracing and living with all that autism means to your family.
No two families' experience with autism is the same; just as no two individuals' with an autism spectrum disorder are the same either. As a colleague of mine always serves to remind me, "If you know one person with autism.....you know one person with autism; " a statement which makes me very mindful of each child's individuality and their inherent right to happiness, whatever that may look like.
As a mental health clinician working with families with autism over the past 13 years (a career I knew well before I became a parent of a child with autism) I thought I new a lot about this 'autism experience.' I have come to know that over the 7 years of my daughter's life thus far; I had really known very little of a family's true experience with autism up to that point. With the birth and subsequent diagnosis of our daughter with autism in 2005 our understanding began with fresh eyes .
Over the years with each passing day, our daughter taught me something unique and important about autism, myself, my community and my relationship with others. Over the years I have often joked with mycolleagues at work when I had bought a new toy, a new product or a new learning material for her to try, that I needed to take it home first to my 'tester' to see if it really was of any use. That 'tester' was my daughter. What I had also come to realise was that, ' what worked for her may or may not work for other children that I had worked with and vice vera." Nonetheless, our daughter's experience and feedback has continued to be a valuable ongoing education process for both her and I. In future blogs, I hope to share some of our experiences with you.
Over the course of my life, I have always believed that 'Information is Power.'
As a parent of a child with autism, wishing to help her to find her way in the world; and to build the skills necessary to be both relatively happy and independent , I have always believed that it was important to seek out new ideas that might help her be more available for learning. I firmly believe that children with autism can learn. They just learn in a different way. Our responsibility as a society is to match our teaching stryle to their learning style, just as we match a person with a physical disability to the means by which they can gain mobility to access the physical world around them. We must meet each child where they are at! If we do so, they will experience many successes along the way.
The topic of information related to autism is very vast and fairly conroversial at times. I shall explore and comment upon this topic in future blogs. It is important to remember that information comes from many sources ranging from experience to 'Gold Standard" research based on the scientific method. Which is best?We must always be critical about questioning all that we read about autism, rather than accepting all 'information' as fact. Parent's always have a 'critical eye' when it comes to safeguarding their children, and sifting through the clatter of information you can find through the media and internet is another area where we must show some caution.
So, when did my perspective on autism shift? Here is a bit of our story....... about how 'autism' became very personal to our family............
I was off work and spending much of my time at home, facing a very different challenge at the time. I was in the midst of what would turn out to be a 2 year battle with cancer. Today I am over 5 years clear of this disease. At the time of my illness, I was often irritable, exhausted and sometimes filled with despair; which was not the optimal time to rely on your instincts about anything. Nonetheless, my partner and I began to notice a few odd things about by daughters lack of typical development in many ways around the age of 12 months. She didn't play with many toys the way other kids her age did. She walked alot on her tippy toes. She stared off into space and seemed as if she didn't hear you because she never seemed to respond to her name. We even had her hearing checked and it was just fine. But ultimately, it was when she did not begin to meet the typical age-range milestones for babbling and even her first spoken words, in combination with these other concerns, that our observations collectivelly grew into greater worry. We knew something was wrong.
Our perspective as parents shifted abruptly, with our first suspicions that our daugher had autism at the age of 12 months to the more concrete and somewhat parralyzing diagnosis of autism at the age of 18 months. And so the journey though autism began for myself, my partner, our extended family and our close friends; a journey that continues to evolve to this day, with some days being hopeful and other days more fearful.
This journey is truly a tenous balance between hope and fear; a balance which we have found it necessary to manage in order to live life more fully, rather than just merely survive within the vacuum, within which autism can isolate families at times. The stress of trying to manage the stress of this juggling act took its toll on our relationship as friends, partners and parents. Over time, we began to better develop the tools toward greater self-care and moved to repair our leaky communication patterns that had become a casulty of this journey with autism. 6 years into this journey our relationship has strengthened dispite the many pitfalls. This is a topic that I will explore further in future blogs. It is often a topic that does not get mentioned out loud ; much like like the proverbial elephant in the living room. Feeling overwhelmed by the thought and reality of living with autism can pull parents in different directions sometimes.
Why did I decide to write this blog?
One day, a friend suggested that I might want to consider writing a blog about autism; as he commented, in his blunt, back-handed and supportive way, that I always had a lot to say about autism. I assumed he meant that was a good thing? :) I have always been very careful as a professional in supporting families with autism, to provide them with access to the most accurate, reputable information possible on autism. The information offered was based on the current 'best practices' across many fields of study, from psychology to education, which support persons with autism. It is always important to keep in mind that opinions differ on what is indeed 'best practice' in the treatment of autism as some treatment methods are more based on anecdotal observation rather than pure 'gold standard' research studies. Nonetheless, I have tried to be careful and selective when offering opinions to others about what may or may not be effective in helping an individual with autism.
As much as anything, I think one of the reasons I decided to finally begin writing a blog about autism was for the benefit of my own self-care; to give me a voice to talk about, think about and discuss issues related to autism and how they have impacted my life and my family. In some ways, writing the blog served to let the 'elephant out of the living room', and maybe to encourage other parents to do the same. Talking about our feelings about autism may be both a bit liberating and empowering, as our voices can now be heard!
In writing this blog, I hope to be able to share some of my experiences as a parent of a daughter with autism. I hope that my story resonates with some readers, provokes discussion and serves to build a greater capacity within our communities to accept, understand and embrace persons with autism for all they have to offer us .............and they have much to offer us, in my opinion.
"A Father's Perspective on Autism," will be my voice for exploring my experiences, and those of my family; which are related to our ongoing journey with autism. Please join me in this journey and share your voice with me as well.
Please share this blog with others so we can build greater capacity for understanding autism within our communities.
Cheers
Paul
Hi Paul:
ReplyDeleteBeautiful job on your blog. The content is informative but more importantly the tone is caring and heartfelt. Thank you for sharing your insights and experiences as a father on this difficult journey. I am certain that what you are doing here will benefit others.
George