It is almost April, which is also Autism Awareness month. April 2nd is World Wide Autism Awareness day. Over the last few years, I have been learning about autism by reading books, following autistic bloggers, parents of autistic children and participating in a discussion group focused on autism. While performing this research, I have become acquainted with the challenges and issues each group has when dealing with autism.
I have read accounts of parents and their non-verbal autistic children. Autistic bloggers have described their experiences in trying to navigate a world that they don’t fit into or always understand. I have read and heard from professionals who support families with autistic children and autistic adults. As I read these accounts, I am struck by the different experiences of medical professionals, school personnel, parents, autistic children and autistic adults. There is a range of difficulties, such as managing the disorders, mental and physical, that can accompany autism, like depression and anxiety, or epilepsy. Other difficulties involve getting the appropriate help for families in order to reduce the stress for parents and their children, and stopping the bullying and abuse of autistic people in school, home and the work place. Sometimes there does not seem to be a common ground and anger is commonly seen, with good reason, due to the lack of support and lack of awareness of how difficult it can be to live in our noisy, and at times, insensitive culture.
So in the month of April, these different groups post their ideas and thoughts of what could and should be done to help out with autism. Some think the focus should be on Autism Acceptance, others see a focus on Autism Action while others are fine with just Autism Awareness. A parent of an autistic child and someone on the spectrum I see valid points in all. The key activity to me is sharing all of these thoughts, ideas and difficulties so that I can others can have a better understanding of all the different viewpoints.
The sharing of different experiences helps to bring awareness to others so that acceptance and action can take place. I have seen how attitudes have changed since my son was younger, especially with autistic adults speaking out. As these experiences have been shared, there is greater understanding about behaviors that seem out of place. When parents share their experiences with autistic children, other parents learn they are not alone and there are options for getting help and reducing the stress in the family. When autistic adults tell of what it was like growing up, parents get more information and understand more about what is right and what is wrong for their children.
In my lifetime I have seen things change from minimal or no awareness of autism, to awareness, and the start of acceptance and providing accommodations. I have also seen the sharing of experiences of parents and eventually more information from autistic people that provides a clearer picture of autism and the people affected by it. There is a lot more work to be done in to create safe environments for autistic people and provide support for families, yet, I feel a lot has changed since the days of institutionalizing autistic people. So while the friction of all of these different viewpoints and ideas may be uncomfortable, I am reminded that change is often difficult and uncomfortable. In the midst of all of these conflicting viewpoints and change, somehow people find ways to keep moving forward. I respect everyone that is finding their way in the world and hope that all find the answers, support and healing they and their loved ones need to be able to reach their full potential for life.
Pictures by J.T. Harpster