Families of autistic children living in low-income areas often find it difficult to get a diagnosis or treatment, according to experts.
"Autism has no known cure or cause,” said Jamitha Fields, vice president of community affairs for Autism Speaks. “Here's what we do know: we can reliably diagnose autism at 24 months, yet our average age of diagnosis is four and a half years old. For Latinos, it’s six years.”
Fields spoke Tuesday at the University of Saint Joseph, along with a panel of other experts on autism spectrum disorder. The panel discussed disparities in autism awareness and diagnosis in underprivileged communities, stressing the difficulties faced by low-income families in the diagnosis and treatment of the disorder.
Panelist Dr. John Molteni, director of the Institute for Autism and Behavioral Studies at USJ, said that no matter who you are, autism diagnosis isn’t always as simple as noticing typical symptoms, and it isn’t uncommon for children to go undiagnosed for years.
"We can diagnose at 2, but we don't see some kids until age 11…” Molteni said. “These are kids who are very verbal and precocious when they're young. They were a year old and they could read all these books, and now they can read at an eigthth grade level and they understand everything they're reading, but they get to the social pressure of middle school and they fall off a cliff."
Panelist Brenetta Henry, an advocate of African Caribbean Parents of Children with Disabilities, has experienced these difficulties first-hand.
"I tried to get my son diagnosed at the age of 2, when I noticed concerns,” Henry said. “But he wasn't diagnosed until the age of 9.”
Panelist Solandy Meza-Forte, program coordinator for the Center for Children with Special Needs, said that delayed diagnoses can make things difficult for the child and the family.
"Often when I'm called in, it's to a family that's been denied services for years, and the child's challenging behavior has become very disruptive,” Meza-Forte said.
According to the panel, these delays in diagnosis become even more pronounced in low-income areas, especially within certain cultural groups.
"African Americans and Latinos face barriers reaching autism care,” Fields said.
According to Fields, Latino and African American families can be encouraged by their culture to keep family problems within the family, to be quiet about them and not seek help.
Dr. Daseta Gray, a certified infant/toddler specialist, traveled from New York to attend the forum. She agreed that an autism diagnosis can be made more difficult by culture.
“Access to care is one thing, but another big barrier is cultural nuances," Gray said.
“Sometimes, people of color, their child gets diagnosed, but they are in denial,” Gray said. “As an early child advocate I've experienced that. They have a diagnosis and the family is saying 'No, nothing is wrong with the child,' and then they'll wait and wait until it's kind of late. “
Getting a diagnosis and accepting it is only part of the issue, however. The panel also addressed financial issues faced by low income families. According to Fields, treatment and therapy for an autistic child can cost a family up $60,000 a year. Insurance isn’t always a help.
"I talk to many parents who have insurance, but their employers have opted out of autism insurance,” Molteni said. "It's still somewhat heartbreaking to me to meet with families and say 'Here's what I'm recommending your child needs, but unfortunately the cost isn't covered by any insurance you have.'"
Molteni said that the attitude towards treatment can make things difficult.
"We treat the treatment as optional,” Molteni said. “I mean, it's not like if you have cancer the treatment is optional, but it's viewed that way for autism."
Fields said that, in reality, treatment is far from optional.
“Evidence-based early intervention services have been shown to reduce the core symptoms of autism, improve I.Q. and daily functioning, and reduce the cost of lifelong care by two-thirds,” Fields said. “Considering the cost of autism over the lifespan is estimated at $2.3 million, those are significant savings.”
Of all the issues facing families of autistic children, however, there is one problem that stands out.
“I think that the most critical challenge is education,” Fields said.
"In the underserved communities, the information on autism is not being disseminated the way it needs to be,” Fields said. “They're not receiving the information through trusted community members. So step one: make sure that they're getting the information. And then step two: make sure that they have a system where they’re getting their child screened and then care, should they receive a diagnosis of autism. ”
Meza-Forte said that education can be difficult.
"Autism is a spectrum, every child is different,” Meza-Forte said. “There's no way to make a single program to address the needs of parents."
Molteni said his university is trying to create an online program to help educate parents of autistic children as an alternative to the on-location programs which they currently offer at USJ.
“We have the issue of parents coming to this university in the evening, and there are childcare requirements and those kinds of things..." Molteni said.
He said that if funded, the online programs would allow parents to work at their own speed at home, with more personalized education options.
'Not just parents'
However, parents aren’t the only ones who need to be educated.
One attendee, Helen Taylor, said "We have to educate the school system. Educate everyone, not just parents."
Molteni agreed. "Our ongoing goal is to work on preparing professionals to work with those with autism,” he said.
He said that teaching professionals how to deal with parents who have- or think they may have- an autistic child is crucial.
"The impact on a parent of not being heard, of not being treated as an expert on their own child, is that they say 'Well, I'm not going to be listened to, so there's nothing I can do,'" Molteni said. “Empowering the parents, saying that they are heard, they are important, that's very important."
Fields said that addressing these issues can’t just be the work of one or two organizations.
"Facing the disparities in autism will take a national plan,” Fields said.
Everyone has a responsibility, according to Fields.
“It's going to take a community to raise a child,” she said. “At the end of the day that's what it really comes down to: a grassroots effort where everyone in the community works towards the betterment of that child's life. We all need to work together to figure out the best outcome for each individual child."