Learning that your son or daughter wasn't accepted into that elite private school you had hoped, could be a big disappointment for a parent.
But when that "private school" happens to be one of just a handful of highly specialized autism applied behavior analysis (ABA) treatment programs, receiving a rejection letter can send parents beyond disappointment to downright despair.
With early ABA treatment, according to Dr. Sharon Reeve, psychology and program head of Caldwell College's graduate studies in ABA, autistic children enjoy a 50 percent chance of developing the skills and behaviors that their non-autistic peers have (in essence, losing their autistic diagnosis).
Conversely, without early ABA intervention, autistic children face the continued and growing challenges of their autism—lack of communication skills, poor fine and gross motor skills, the inability to sit still and lack of appropriate social behavior—and in some cases even require institutionalization.
These are "life-saving placements," according to Mary Beth Walsh, whose now 11-year-old son, Benedict Hack, was fortunate enough to receive a spot in an ABA program immediately following his autism diagnosis when he was 2 1/2 years old.
"He had a complete lack of language," said Walsh, describing her son prior to entering ABA treatment with Reeve and the Caldwell College staff.
"No babbling, nothing that sounded like a language sound … he didn't point at things [or] bring us things to show and get a reaction."
Immediately after beginning ABA treatment, he began making the "mmmmmm" sound and fairly quickly was able to say "momma," according to Walsh.
Reeve also immediately instructed Ben to sit still, a critical skill for the child to master so that he or she can succeed in a teaching environment. Ben continues treatment today at Reed Academy in Garfield (an affiliate of Caldwell College), and through ABA, Ben has learned to speak and communicate his needs, has the ability to sit still and concentrate on tasks (both school work and other tasks), to play sports and successfully interact with friends.
Walsh said her son will almost certainly be able to hold a job, contrary to the negative prognosis many professionals had given her following Ben's diagnosis.
"The attitude [from doctors] was 'your kid is autistic, you shouldn't expect much anyway,'" Walsh said. "Other parents of autistic kids should know it's not a hopeless diagnosis—we need to empower parents to believe that their kids can learn."
Walsh also acknowledges the importance of parents in becoming educated on ABA, so they can reinforce the methods in the home once the child is receiving ABA in a treatment program. She said raising an autistic child is what she calls "extreme parenting." It's s just like parenting a normal child, but it requires "more effort, more intentionality, more contingencies," Walsh pointed out.
While many people mistakenly believe autism is a new phenomenon and a new diagnosis, Reeve said the diagnosis has been around for a long time. The difference she said is "we used to institutionalize all people with autism, we considered them uneducable; they were the forgotten people."
A major breakthrough came in 1987 when world renowned autism expert, Dr. O. Ivar Lovaas, published the results of his ground-breaking autism study—the findings of which gave new hope to autism professionals around the world.
The findings included:
- 90 percent of children substantially improved when utilizing the Lovaas Model of ABA compared to the control group
- Close to half attained a normal IQ and tested within the normal range on adaptive and social skills, according to Lovaas research
But, despite the extraordinary success rate of ABA in helping normalize autistic children, there is a lack of capacity of trained ABA professionals and treatment facilities to handle the need.
"New Jersey has the highest incident rate [in the country] with 1 in 94 children being diagnosed," said Reeve, who speculates that the high rate is not due to anything environmental, but rather the state's high number of trained autism professionals who can make positive diagnoses.
"We have the best autism services here in the state [and] private schools for autism that are world renowned," she said. "The best one in our state—the Princeton Child Development Institute—has been around for 30 years and they have a couple dissemination sites, Somerset Hills Learning Institute [and] Garden Academy in Maplewood.
"The unfortunate situation is, if you put all of those institutions together, it barely serves a fraction of the 8,000 kids in New Jersey that need it, so there is a waiting list of 400 kids at some of these schools."
Caldwell College began its ABA program in the summer of 2004, starting with a certificate program in ABA, allowing its graduates to become board certified analysts. Another requirement of an ABA analyst is to have a master's degree, so the college added that program in the fall of 2005.
Finally, this year Caldwell College has added the PhD program—the first of its kind in New Jersey—and will open an on-campus treatment clinic next year. In all, there are 120 students in Caldwell's master's, post-master's and PhD programs, according to Reeve.
The nearly $600,000 cost of implementing the PhD program was covered by $476,000 in grants plus $100,000 the college raised in donations and pledges. However, the school needs an additional $350,000 to renovate an area of Mary Joseph Residence Hall for the clinic.
The cost of the ABA programs for parents is state funded.
"They are expensive schools ... but there is good evidence that the money we spend educating them more than outweighs the cost of the child over the lifetime if they had not been treated," Walsh said.
Reeve said that with each graduate of the program, up to 100 children can be affected. "If we put out six to 10 graduates each year, we can get to thousands of kids," Reeve said. "We want to get to every kid in the state of New Jersey."
Dr. Paul Douillard, vice president of Caldwell College and dean of academic affairs, said he is pleased with Caldwell's expansion of its ABA offering and the addition of the PhD program, which is a first for the college.
"It certainly raises the bar—across the board," Douillard said. "It really does change the character of the institution [having a PhD program]. I also see it as very in keeping with the mission of Caldwell College as a Catholic, Dominican institution and our historical commitment to educating teachers since our founding 70 years ago."
2006 Lovaas autism study results of children with early intensive behavioral treatment
- 29 percent (6 of 21) children were fully included in regular education without assistance
- 52 percent (11 of 21) were included in regular education with support
- 5 percent (1 of 21) children in the control group (those without ABA) were placed in regular education
For more information, here is a list of useful links:
Caldwell College Autism Education Programs: http://www.caldwell.edu/autism
Princeton Child Development Institute: http://www.pcdi.org
Lovaas Research Studies on Effectiveness of ABA-style treatment: http://www.lovaas.com/research.php
About ABA: http://www.behavior.org/autism
Association for Science in Autism Treatment (research and resources): http://www.asatonline.org
Signs and Symptoms of Autism: http://www.mayoclinic.com/health/autism/DS00348/DSECTION=symptoms