One of the most difficult aspects of joining the world of disability is the array of people who enter your life in a helping capacity such as special educators and social workers, yet many of these people have never experienced disability on a personal level. It is refreshing to meet people who have the personal or family experience of disability and are able to use their knowledge, skills and life experience to assist others on their journey. Ten years ago Naomi Amat found out that her son had autism. She used the challenges that her son’s diagnosis brought into her life to reach out and support others by establishing an incredibly supportive Facebook group called Autism Living Life on the Spectrum. This group has close to 4000 members and includes people with autism, parents and professionals who provide support, information, ideas and strategies. There are many groups that are designed only for people with disabilities but it is rare to find a group that encourages open dialogue between professionals and those with disabilities and their parents or carers.
One of the most helpful aspects of this forum is the openness and raw honesty of a number of the posts. Many of the members are mothers who struggle not so much with their child’s diagnosis, but with the uncertainty of living in a world that is hostile to difference. Some are frustrated by the unrealistic expectations placed on mothers by our society and the difficulties and barriers placed in their way. A few mothers have shared heartbreaking stories of how they have felt pushed to the brink and it is refreshing to read the kindness, reassurance and compassion in the online responses. Some mothers have felt the need to vent their anger at professionals. Often these posts seem justified. Naomi has been able to steer these conversations into constructive responses where the lines of communication remain open and all parties, including parents and professionals, are able to learn from each other rather than playing the blame game.
Check out Naomi’s Facebook site at: