posted on: Friday, April 03, 2009

by Niki Jagpal

Yesterday marked the second annual World Autism Awareness Day (WAAD), adopted via resolution by the UN General Assembly with support from all member states on the 18th of December, 2007. As noted on the WAAD website:

This UN resolution is one of only three official disease-specific United Nations Days and will bring the world's attention to autism, a pervasive disorder that affects tens of millions. The World Autism Awareness Day resolution encourages all Member States to take measures to raise awareness about autism throughout society and to encourage early diagnosis and early intervention. It further expresses deep concern at the prevalence and high rate of autism in children in all regions of the world and the consequent developmental challenges.

According to the Autism Society of America, autism affects between 1 to 1.5 million Americans; costs $90 billion annually of which adults comprise fully 90% of service costs; and will rise to an annual cost for health management services ranging between $200 and $400 billion in the next decade.

On the April 2, 2009 edition of ABC News’ Good Morning America, anchor Robin Roberts introduced WAAD stating it is “a day to remember the millions affected by this. Now, we look at the millions of parents and children who struggle to get their children the care they desperately need.” Reporter Deborah Roberts covered the story, highlighting a recent Harvard School of Public Health study that estimated the costs of raising an autistic child through adulthood at just above $3 million. Roberts featured two families; the first was of Ann Guay, policy analyst at the Massachusetts Advocates for Children[1], whose son was diagnosed with autism at the age of three. As Roberts noted, “Ann was fortunate. She had the financial means to care for Brian and get him additional services.” Next, she and Guay presented Santa Reyes, mother of an autistic son who was also diagnosed at the age of three. Reyes is of limited English proficiency and “had no idea where to turn for help.” Speaking through a translator, Reyes said that her son “was not receiving the right services, including speech therapy.” Guay noted that “Many of [Massachusetts Advocates] clients have linguistic and cultural barriers. They need to sort of navigate the system, where they don't always speak English.”

Deborah Roberts also spoke with Bob Wright, co-founder of Autism Speaks, the U.S.’s leading advocacy group funding autism research and assisting impacted families. Responding to Roberts’ question about breaking the cultural barriers to accessing care for autistic children, Wright stated, “If you are African American, Hispanic, or your first language is not English, then you're highly likely to be diagnosed in kindergarten or first grade, not having had early diagnosis. …. And then in that situation you've missed out on all the earlier interventions.” Roberts reported, “Santa learned just how powerful those services can be. After one year, she's seen dramatic improvement in her son, who's now reading and writing both English and Spanish. And even doing math.”

Anchor Robin Roberts noted that these parents have rights but remain unaware of them, Deborah Roberts agreed and added, “And a lot of the parents, especially if they don't speak English, or they don't have the financial means, they don't know that even in the public school systems, they have a right to have a certain education program for their children, or a therapy program for their children. It's important that they know these things.” Guay noted that Santa’s son was but one child and the challenge is to find ways that allow other families access to knowledge of early prevention and treatment services, and their rights.

Why am I writing about WAAD? It isn’t just because I know families with autistic children. It’s because these powerful stories demonstrate vividly how certain groups remain unaware of their rights and unable to care for their wonderful children simply because “the system” isn’t designed for them. Imagine what Santa’s son could be doing in addition to being bilingual and doing math had he been able to access early intervention programs. Perhaps he’d be speaking a third language, or working on his arts skills. And let’s not forget what “cultural barriers” implies—it shows how differences in life achievement result from the intersection of various ways of “othering” people into specific groups. Here, lower-income status coupled with racial “minority” status is amplified by entrenched gender norms that keep women from having the same knowledge that some marginalized men might, or might not, have.

Inequality of life opportunities is complicated and non-linear. Institutionalized norms and practices allow our healthcare system to provide universal intervention programs, which could cut long-term healthcare costs for autistic families and the system itself. But no matter how well-intentioned, a story like Santa’s is a strong reminder of the need for targeted universalism as described in the Values chapter of our recently published Criteria for Philanthropy at Its Best. Rawls might seem “abstract,” as might the notion of “distributive justice.” But the concrete facts of normalized and systemic marginalization couldn’t be clearer than the disproportionate lack of access to intervention programs that families not as fortunate as Santa’s confront every day.

The WAAD website states: “By bringing together autism organizations all around the world, we will give a voice to the millions of individuals worldwide who are undiagnosed, misunderstood and looking for help. Please join us in our effort to inspire compassion, inclusion and hope.” In keeping with the normative framework and the intent with which NCRP’s Criteria were developed, I couldn’t agree more. Just as we can bring voice to the millions of individuals impacted by autism, through inclusion and hope, philanthropy and nonprofits can use justice, inclusion and hope as we did to ground our recommendation that funders provide 50% of their grant dollars for the benefit of marginalized communities, broadly defined. Not only will autistic children and their families benefit, but all American families and our healthcare system can reap benefits by adopting targeted universalism in their approaches to early treatment and care.

Niki Jagpal is research & policy director at the National Committee for Responsive Philanthropy.

[1] Massachusetts Advocates for Children is a Boston area organization that assists lower-income families.