While we have all read the plethora of articles on the alarmingly increasing rate of autism diagnoses, we’ve begun to stray from the imminently important task of creating a safety net for people who are living with autism in their lives right NOW. Unlike most people affected by a life with autism, I had the education and financial wherewithal to be lucky enough to diagnose my son Julian at the early age of 14 months, and immediately begin privately & publicly funded extraordinary intervention programs. These programs had a profoundly positive effect on my son and his ability to cope with his myriad of symptoms and afflictions that make the world a very difficult place for him to survive, maneuver, and operate within. There are countless types of treatments and drugs to choose from, and most can be very expensive and extraordinarily time consuming. My son has taken part in intensive intervention programs including, but not limited to: speech therapy, physical therapy, occupational therapy, social interaction groups, neurological assessments and treatment, behavioral assessments and treatment, private therapists, and drug therapy experts. The list of interventions and therapies he has had since his diagnosis seems endless and daunting. The seemingly infinite therapies I took Julian to had a mental, emotional and physical toll on me, even with the fact that I thankfully could afford all these interventions and therapies. What about all the people, however, that cannot afford for one reason or another to provide as I was able to for my son? What happens to all the people that are not or were not as fortunate as I was?
My experience in being able to provide for my son’s needs is not the case for most parents and care takers of those affected by autism. Although the age for diagnoses is thankfully decreasing, there are still many children who are not being diagnosed early on in their lives when it is most critical, and subsequently not receiving the treatment they need because their families are unable to afford it. In 2007 the CDC estimated that 1 in 150 children had an ASD (autism spectrum disorder). However, the CDC just reported in extensive findings that as of March 2012, the rate of autism had risen to one in 88. One in 54 in boys compared to 1 in 252 for girls were diagnosed with ASD. The largest increases were in minorities (Hispanic (110 percent) and black (91 percent)). The astounding increases highlight that children of low-income families are less likely to be diagnosed, or only diagnosed when it is too late to make the biggest impact on their well-being.
The Department of Developmental Services in California grouped diagnosed children as low-functioning, high-functioning and “bloomers” who start out as low-functioning and rapidly progress to being high-functioning. A new study tracking nearly 7,000 autistic children born between 1992 and 2001 in California showed that mothers of children who bloom tended to be more educated and not minorities. This suggests that low-income immigrant or minority families may not be receiving the services and support for their children that educated, affluent parents are able to access more easily. I’m not surprised, and we certainly did not need a study to figure that out! After diagnosis, the on-going therapy can cost hundreds of thousands of dollars. In addition to cost for treatment & household items, carers of autism are often times unable to work because of the attention that a child may need.
Fixing these income and education disparities in who is able to get early intervention and treatment for autism is critical. Although autism can be diagnosed as early as 12 months of age, the CDC study clearly demonstrates that the average diagnosis is not made until four years of age. This is very bad as the sooner the diagnosis, the more effective therapy and treatment will be. For this to happen, we need to focus on fundraising and a platform to provide the same opportunity of diagnosis and quality of service & care for all children nationally. This is the reason that Tim Welsh and I formed AutismAid (www.autismaid.org, www.facebook.com/autismaid).
AutismAid’s goal is to be an umbrella for autism organizations and supporters across the globe to unify and gather under for support. Additionally we wish to refocus education on key issues in autism and the mobilization of communities to create a sustainable safety net, effectively providing a balance of services in the community that we feel have not been adequate. We are not attempting to be another non-profit that only serves a particular denomination, but a safety net that brings other organizations under one umbrella to empower them with funding and services. AutismAid invites businesses, non-profits, the medical community, and individuals from neighborhoods around the world to participate in the cause. Our organization is prepared to change the paradigm from aware to action and care. Care means bring resources to local service support non-profit groups, ending discrimination, and saving lives. We take very seriously the urgency of need for the autism community and will lead a charge to unify and raise service levels for all. Please contact Tim Welsh or me at AutismAid.org with any thoughts, questions or comments you might have.