The years of work that went into the Hospital for Special Care's plan to open an autism center gave officials there a sense of the need for services. But the demand hit home the morning after a local newspaper detailed the New Britain hospital's plans.
"We got a phone call by 9 o'clock from a dad," said Lynn Ricci, the hospital's senior vice president for administration. "People are really desperate for some help with this."
It was hard, Ricci said, to not be able to tell the man his child could be seen the next day, but the program isn't expected to open until later this winter.
"There's tremendous need," she said. "Actually, way more than we could ever make a dent in on our own."
Advocates have been vocal in raising awareness of autism spectrum disorders as diagnoses have increased. But they say access to the right services has lagged, and attribute it to both a lack of providers and, for many families, difficulty paying for whatever services they can get.
"Children with autism and other developmental disabilities are probably one of the most underserved populations in the state of Connecticut," state Child Advocate Jeanne Milstein said. "We need all kinds of services and we need ways of paying for these services."
The Centers for Disease Control and Prevention estimates that between 1 in 80 and 1 in 240 children in the United States has an autism spectrum disorder, and a recent report by the Thomas B. Fordham Institute found that while the number of special education students has declined since the 2004-2005 school year, the number of students with autism has quadrupled from 92,997 in 2000-2001 to 377,909 in the 2009-2010 school year.
Milstein and other advocates say the needs range from affordable child care for babies to independent supportive housing for adults.
The challenges begin early, with some families struggling to find a provider to make a diagnosis.
"For many parents, there's quite a waiting list for the few people who are available and who are any good at it," said Sara Reed, executive director of ASCONN, a parent advocacy group devoted to autism. Many providers who have top reputations have long waiting lists, and some families can wait two years or more for an appointment, she said. (An official autism diagnosis is not required for a child to receive services from a school system, but Reed noted that a good evaluation is key to determining the best interventions to try.)
In medicine, psychiatry, social work, psychology, teaching -- "You name it, and we don't have people trained at all in any of these fields to work with people with autism spectrum disorder," said Lois Rosenwald, executive director of the Connecticut Autism Spectrum Resource Center.
"You name it, we need it," she said.
Rosenwald said part of the problem stems from a lack of a funding source to cover autism-related services, giving providers little motivation to get trained in addressing autism. There's no dedicated state department that covers it, although the Department of Developmental Services now has a division of autism services.
A recent state law requires health insurance to cover diagnosis and treatment of autism spectrum disorders, but the requirement doesn't apply to self-insured plans that are common at large companies and cover about half of those with private insurance in the state.
Autism often falls through the cracks between mental health and developmental disabilities, some advocates say. Until recently, children with autism only qualified for DDS services if they had an IQ below 70. "Parents would call our office in tears saying, 'You hate to wish this, but I wish my child had an IQ of 69,'" Milstein said.
Dr. Ann Milanese, a developmental pediatrician who serves as division chief for developmental pediatrics at Connecticut Children's Medical Center in Hartford, said there might be enough services overall in the state, but they're not well allocated. "The way it works a lot is the families who need it the most are getting the least," she said.
Milanese said one way to make sure children get the interventions they need at the key points in development -- at age 2 or younger -- is to make sure pediatricians can identify concerns; she and some of her colleagues go to pediatric offices to teach the staff about a UConn-developed screening for autism risk.
The hospital's Autism Spectrum Assessment Program -- ASAP, "which is when people want to be seen," Milanese said -- uses information gathered from the other providers who have worked with a child, including any of the state's birth-to-3 services, and provide an evaluation by two clinicians.
The demand for services is high, although Milanese said it might appear higher than it is because many families will call multiple providers that have waiting lists and put their names on each, something she said is understandable.
Still, she said, there's always a need for more providers, as well as for better coordination of efforts.
"Fundamentally, from the providers' point of view, there's way more than enough to go around," she said. "We're not having to compete to keep our lights on here. There's more work than we can all do."
The Hospital for Special Care is beginning its program with outpatient services, including offering assessments, treatment and services including speech, physical and occupational therapy, and access to a behavioral analyst who can help families manage their children's difficulties with feeding, toileting, sleeping or eating, which often present problems for children with autism. It will join Connecticut Children's and the Yale Child Study Center as the major hospital-based autism programs in the state, and will focus on children.
Hospital for Special Care officials also hope to add an inpatient unit later on, and are working to access the capital to make it possible, Ricci said.
While there's plenty of demand for hospital-based programs -- the Connecticut Children's program sees about 300 children a year for diagnoses -- Milanese said much of the need for services falls at the other end of the spectrum.
"[Services are] needed in the home and then they're also needed in the community," she said. That means home-based services to continue the programs children receive in school and train parents to provide it; there are a few agencies doing it now, but not enough, Milanese said.
Similarly, she said, it would help for families to have options like getting their children with autism swimming lessons at the local community center. Ricci noted that children with autism often don't have access to the recreation activities other kids do. "It becomes very isolating to them," she said.
DDS spokeswoman Joan Barnish said the agency frequently fields calls from families interested in afterschool supports, behavioral intervention, in-home services, socialization activities and alternate living arrangements.
And Milstein said families need respite programs so their children can be cared for while they take a break and do something else, like watching another child play soccer or run errands.
While advocates have been vocal in trying to raise awareness about autism, Reed said the movement has often been fractured and split between many groups.
It's not clear what causes autism, and there's not a lot of information about what programs are good and why, Reed said, leading people to form their own opinions. "And that makes it difficult to advocate generally," she said.