The New York City-based YAI-National Institute for People With Disabilities (YAI-NIPD) is a not-for-profit organization that not only assists families who have members with a variety of developmental disabilities, but also holds a series of conferences that highlight the latest research into specific conditions.Earlier in May, YAI-NIPD held an autism conference that addressed the apparent increase in autism cases. One reason may be a broader definition of autism, said Dr David Kaufman, medical director of Premier Healthcare, a Manhattan organization specializing in disability services.
"The estimate was one child in 166, made by the epidemiology unit of the [US government's] National Institutes of Health," Kaufman said. "Now it is down to one in 150. I think that since the definition has been broadened, a lot of children are getting diagnosed who are at the milder end of the spectrum."
Cause remains unclear
The cause of autism remains unclear, Kaufman said. "I believe that there is something in these children that predisposes them to autism and maybe something that triggers it, perhaps a viral illness, like children who get diabetes at an early age."
Whatever the cause, "the best treatment so far is diagnosing it early on and intervening early on, sometimes with medications," Kaufman said. "There is a broad array of early intervention services."
When a child's mysteriously detached behaviour arouses parents' suspicions, "the first line of defence is with the paediatrician," he said. "The child can be referred to a developmental paediatrician or pediatric neurologist or specialist who will do an evaluation and then send the child to a speech therapist, a language therapist or another therapist for treatment. The earlier you intervene, the better children do."
Children's basic medical needs should not be overlooked, Kaufman said. "Their medical needs are the same as anyone else, but it is harder to get at them," he said. "Once they get to age 2 or 4, they are able to tell the doctor what is wrong with them, but they are not as co-operative as another child might be."
Although there is a long way to go, "One thing that is being done right is an increased awareness of autism," said Dr Eric Hollander, professor and chairman of psychiatry at Mount Sinai School of Medicine in New York. "It has become a priority funding issue for the National Institutes of Health. There are findings that directly impact on treatment and also can lead to a better understanding of the underlying causes."
Adult autism neglected
One area that clearly has been neglected is autism in adults, Hollander said. "With the high school or college population, the need for residential care is also there. Child psychiatrists and paediatricians will not necessarily be treating these individuals when they get older.
"And those who work with the older population don't have enough training. We need to know a lot more about intervention with medication, how it alters outcome, the repetitive behaviour, the rigid behaviour, and also new treatments for disruptive behaviour."
What causes autism? Attention is being focused on oxytocin, a hormone produced by the pituitary gland, Hollander said. It appears to play a role in social behaviour and repetitive behaviour. "Now we are starting to have a certain impact on symptoms by administering oxytocin in various forms, such as intravenously."
Attention also is being paid to environmental and genetic factors, Hollander said: "Things in the environment that influence what genes are turned on and turned off. We need to know a lot more about environmental factors and how they play a role in some people with autism."
One indicator of how much remains to be learned is the widely differing rates of diagnosis of autism from state to state, Hollander said, but that is just part of the picture. "We don't have predictors of which individuals will respond to which kinds of treatment," he said, but ended on a hopeful note: "With additional funding, there will be more rapid breakthroughs."
Dr Steven Lowe, the medical director of YAI-NIPD, added that autism treatment still is often a struggle. "It's a challenge, because so little work has been done in the management of patients with autism and also in mental retardation and developmental disabilities," he said. "There has been very limited work on management of such patients in the primary care area and very limited research. There is limited interest for primary health-care practitioners, because it is such a daunting prospect."
But there is impetus for progress from "parents and other caregivers and the media," Lowe said. "Among them, the issue of autism is better recognised, and it is less of a stigma. People with autism are becoming more visible. Caregivers are advocating for better access to the same sort of health care that disabled people are getting.
Lack of formal training
"There is a tremendous lack of formalised training in medicine appropriate to this patient population," Lowe added. "But there are providers out there - institutions like our own take care of patients with mental disabilities, mainly through on-the-job training."
For families facing a problem, "my recommendation is to find a place that specializes in this patient population," Lowe said. "Look for a multidisciplinary system where everyone is comfortable with mental retardation or developmental disabilities such as autism. You need a large group of clinicians in various fields, the kind of team approach that has proven to be very effective."
Diet also plays a role
Then there is the influence of other elements, such as diet. Dr Joseph Levy, a pediatric gastroenterologist who is professor of paediatrics at the New York University School of Medicine, offers a theory that developmental disability is often literally a gut issue.
"There are a whole host of anecdotal reports about how particular diets have enabled children to make progress," Levy said. "Sooner or later, every parent will focus on the dimension of nutrition of child care and will experiment with it. For example, if there is aggressive or self-injurious behaviour, the explanation is that the child has reflux irritation or difficulty with bowel movements."
The problem is that parental concentration on dietary factors means that they "sometimes are committed to thinking that autism is the manifestation of a leaky gut," Levy said. "But we don't know whether it is proven that autism is really a disease that affects the immune system in the gut, with toxins that are absorbed from the intestines."
It is necessary to work with nutritionists to be sure that children with autism get the proper micronutrients, but "autism is not one diagnosis, and this can put parents to great restrictions and might even be harmful," Levy said. "We do have to move forward the science that enables us to understand what is going on in the gut of the child, but we must do that without a preset ideology." – (HealthDayNews)
A-Z of Autism