On Monday, August 16th, ABC World News Tonight aired a story on family from New Jersey who is raising a son with autism (link below). While ABC regularly features stories on autism, this one in particular struck a chord with me because it raised an issue not often mentioned in mainstream media: autism spectrum disorders (ASD) are life-long and those individuals diagnosed with ASD typically require systematic, organized supports through out their lives. ASD is rarely, if ever, cured, but rather treated by the individual’s personal “village” of family members, therapists, and other community supports.
The father of the family featured in the news story is a vice president with Autism Speaks, one of the nation’s largest support organizations. One would assume therefore that he and his family have access to all the assistance they need (another reason this story caught my attention). But, while watching the clip, it is apparent that this is definitely not the case.
To prove the point of the necessity of a “village to raise a child”, especially a child on the spectrum, the family invites into their home the individuals in their community that touch the life of their son. One of the invited guests drew a visual flowchart of the boy’s life, but even though so many people were involved in his daily life, the common theme that kept rising to the surface was the constant loneliness and isolation of the boy himself, a trademark of ASD.
So for professionals like me who work in agencies that have the opportunity to design programs to best serve these individuals and their families, what are the answers here? What are our solutions? While initially I found this story sad and somewhat hopeless, I also felt myself motivated to meet the challenges that so many families are facing – these families who, with fearless hope, remain optimistic that there are answers and solutions for the futures of their loved ones who live with ASD.
To those of you out there, please let us know how Easter Seals can help.