PCDI teacher Melissa Edwards and Ginny.

A spectrum of challenges and hopeful possibilities

By Donald Gilpin

Autism now affects one in 68 children and one in 42 boys in the United States. New Jersey, with one in 48 children and one in 28 boys, has the highest rate of autism in the country. More children will be diagnosed with autism this year than with AIDS, diabetes, and cancer combined, and the cost of supporting an individual with autism during his or her lifespan can be upwards of $2.4 million.

It is a relatively new neurodevelopmental disorder, not clinically existing for the first time until 1943, when American child psychiatrist Leo Kanner first described it as its own condition—not simply as a type of social maladjustment or neurological impairment. Kanner published a study about 11 children who were highly intelligent but displayed “a powerful desire for aloneness” and “an obsessive insistence on persistent sameness.” He later named this condition “early infantile autism.”

Autism, or autism spectrum disorder (ASD) as it is now designated by the most recent Diagnostic and Statistical Manual of Mental Disorders (DSM 5), can comprise a wide variety of different behaviors, skills, abilities, and disabilities.

The list of famous figures thought to have been autistic, or at least to have autistic qualities, includes Isaac Newton, Wolfgang Amadeus Mozart, Thomas Jefferson, Ludwig van Beethoven, Emily Dickinson, Mark Twain, Charles Darwin, Lewis Carroll, Vincent van Gogh, Thomas Edison, Albert Einstein, Andy Warhol, Bill Gates, and many more. Their autistic qualities often interweave with the attributes of genius. (Note the obsessive determination of many of these figures, or Warhol’s love of repetition—all those soup cans, for example.)

ASD manifests in repetitive behaviors, interests, and activities; and difficulties with social communication and interaction. The symptoms affect daily functioning from early childhood on.  The severity of ASD can vary greatly, with the spectrum of behaviors and disabilities including some children and adults with ASD who can successfully function independently and others needing substantial support to perform basic activities.

First signs of ASD may appear during infancy, when the child might become overly focused on certain objects, rarely make eye contact, and not engage in typical babbling with parents. Social interactions, typical communication, and interaction are often particularly challenging for children with ASD. They may not respond to their names, avoiding eye contact and most interactions with others.

Children with ASD may prefer to be alone and may find it difficult to understand other people’s feelings. Some children with ASD may have delayed speech and language skills, may repeat phrases, and give unrelated answers to questions.  They may also have a hard time understanding non-verbal cues such as gestures, body language, or tone of voice.

Children with ASD may engage in repetitive movements or unusual behaviors such as arm flapping, rocking from side to side, or twirling. They may become preoccupied with particular objects or parts of objects or obsessively interested in a particular topic. Many people with ASD thrive so much on routine that any changes in daily activities or in their environment can be very challenging, causing anger or emotional outbursts.

There is no cure for ASD.  For many children, symptoms improve with age and treatment. Usually people with ASD continue to need help throughout their lives, but people with less severe ASD may be able to work successfully and live independently or within a supportive environment.

The challenges of autism are immense and growing for individuals, parents and families, schools, and society at large.  Successfully treating autism is difficult—intellectually, emotionally, and financially. It’s expensive and labor-intensive to work effectively with children who suffer from ASD, and the challenges can become even more severe in adulthood.

The good news in this highest-autism-prevalence state of New Jersey is that “we’re doing a tremendous job identifying children and connecting them to services,” said Autism NJ Executive Director Suzanne Buchanan.

Buchanan, a licensed psychologist and board certified behavior analyst-doctoral (BCBA-D), notes New Jersey’s “mature network of advocacy organizations and concerned parents who have access to information and are networking with each other and with our organization.”

Autism NJ Executive Director Suzanne Buchanan on air for a NJ 101.5 Town Hall.

Autism NJ

Autism NJ was founded in 1965 by a group of concerned parents, who recognized the need for immediate treatment and advocacy.  The “amazing advocacy group,” as Buchanan describes it,  does four main things for the community: it provides information; offers education and training; promotes public policy to influence legislation; and provides services and awareness.

Information is available on their 1-800-4AUTISM help line. “We help families and professionals navigate service delivery,” Buchanan explained.  “Often it is challenging for families to understand what services their child is entitled to and how to access those services. We’re with them every step of the way, from the moment they suspect something is developmentally off with their child all the way through questions about adulthood, long-term care, what happens when I can no longer care for my child, and everything in between.”

The autismnj.org website includes extensive resources for parents as well as publications on what to do when you get the diagnosis, teenage and adult resources, a booklet on the best care for autistic children in public schools, and more.

“Being an autism community for more than 50 years,” Buchanan said, “we have a very thorough database through our website 24/7 to help parents navigate to find the right provider and get funding for the services.”

Autism NJ sponsors two major conferences each year.  On October 19 and 20 more than 1,300 parents and professionals will gather in Atlantic City for some 80 different workshops, featuring a variety of experts on a wide range of topics related to autism, from instructional strategies to state service systems to advocacy, including recent best practice research, ideas about federal policy, and implications for Medicaid funding.

In its 35th year, this conference manifests a “tangible sense of community,” says Dr. Buchanan.  “It’s a reunion for the community and everyone acting in the best interests of those who have autism.”

Addressing a perhaps even more urgent challenge, Autism NJ’s second conference, to be held on February 26, 2018 in Iselin, will focus on the transition from adolescence to adulthood.  In its fifth year, this conference will address “the service crisis that many adults experience after their educational entitlement ends.  We know that more than 26 percent of adults with autism receive no services after graduation, and many more are not provided with the services they need for a basic quality of life,” Buchanan said.

“Our tagline is ‘the power of connection,’ to connect people to information, to training, to services,” she further notes. ”It’s a time of tremendous uncertainty for a population that has many critical needs, and it’s reasonable to assume, given conversations about health care at the federal level, that there may be cuts for individuals with developmental disabilities. We’re constantly monitoring the situation and working at the state level to try and lessen any negative effects. There may be more state-based influence into how Medicaid dollars are allocated to the population, and we’ll be at every table we can be to assure that the needs of individuals with autism are everyone’s priority.”

Chris Gagliardi and self-advocate Mom at the 34th Annual Conference with Autism NJ Education and Training Director Elizabeth Neumann and Executive Director Suzanne Buchanan.

“The Greatest Hope”

The most promising news in treating ASD comes from the field of applied behavior analysis (ABA). Since the 1960s a wide variety of behavioral interventions based on principles of learning theory have been used in dealing with ASD children and adults, with the goal of increasing positive behaviors and reducing behaviors that may cause harm or interfere with learning.

Analytic studies of intervention treatments for autistic children show that 30-40 percent of autistic children participating in the ABA group for one-two years “became indistinguishable from their peers,” meaning that behaviorally they recovered.  Their behaviors fall within normal limits, Buchanan says.  It is her mission, and the goal of Autism NJ, to help all ASD children to gain access to the highest quality ABA programs.

“The vast majority of children with autism do not have access to ABA and certainly not to high quality ABA. That really represents the greatest hope that this community has,” Buchanan says. “If we can get more intensive high quality ABA to children as soon as the diagnosis is confirmed, then that can change a child and family’s life within a few years.  Even for children who still go on and have challenges, those challenges are much less intense.  The children who participate in intervention have a much larger skill set and fewer challenging behaviors, so their progress is much better than it would have been without the early intervention. From a humanistic perspective as well as from a financial perspective, it makes so much sense.”

She cites a cost analysis study done in Texas recently which determined that the state, over an 18-year period, could have saved over $2 billion if it had had an early intervention ABA program in place.  “And of course, more children would be in a much better place,” she said, “so you can make the case from the humanistic or moral or financial point of view. ”

She emphasized her commitment to her role as an advocate for the best possible treatment for those affected by ASD. “That’s why I’m on this planet, to get that information to the legislators and the governor and the administration so they can help get the children the most effective intervention.”

ABA  

The success of ABA, according to Buchanan, requires that the intervention be individualized, engaging, and evidence-based:

• Individualized—because every child or adult with autism has an individual profile, idiosyncrasies, things that they respond well to, their own personalities.

• Engaging—because one of the core characteristics of autism is a lack of motivation, or limited social motivation.  These are children who at first are not ready to learn or to soak up the knowledge.

• Evidence-based—“We know a lot about what works.  We want to give every child their best odds on a better quality of life, so when you look at interventions and evidence you come to ABA,” says Buchanan.

In its simplest form, ABA examines the relationship between every behavior that the child does and what’s going on in the environment.  Behavior analysts first observe, see what skills the child has, note what’s happening in the environment, and try to figure out what motivates the child.

“Is it trains? Maybe we’ll use trains,” Buchanan gives an example relating to a 3-year-old boy with autism.  “If it’s a particular Disney movie, maybe we’ll use that. We’ll find reinforcing and rewarding items for the child and try to arrange interaction for the child around that, so that if the child is responsive, then he gets to play something fun. It’s a simplistic way of looking at it, but it’s looking at everything that’s happening in the environment before the behavior, after the behavior, and trying to make appropriate behavior happen more often and inappropriate behavior happen less often.”

The intervention, the task of the ABA teacher, is time- and labor-intensive. “It’s often a long way for a child with autism, from their first intervention to being able to participate effectively in a general education classroom.  There are a lot of learning opportunities and practice and reinforcement along the way,” Buchanan says.

ABA takes the approach that all behavior, including challenging behavior, is a form of communication. “So if the child is hitting his sister or his mom or himself or banging his head on the kitchen floor, and they don’t understand why, behavior analysts take a communication approach to that and do their observation and see what’s happening before the behavior and what’s happening after,” Buchanan explains. “And they can come up with a hypothesis as to why the child is doing that. Maybe he was just denied access to something. Maybe he wanted a cookie or maybe he was trying to get out of staying too long at the dinner table.”

Pat Progar, executive director of PCDI.

Princeton Child Development Institute (PCDI)

Pat Progar, in his second year as executive director of PCDI, shares Buchanan’s enthusiasm for ABA, “the only scientifically-validated treatment for autism,” he says. A service provider since 1970, PCDI, on Cold Soil Road, currently enrolls 30 autistic students in its education program and 28 participants in its adult program, most of whom have come through the education program and “graduated” into the adult program at the age of 21.

Progar describes the wide range of students and abilities at PCDI. “We have a lot of different outcomes,” he said. “Autism is a spectrum disorder, and you have some kids on one end of the spectrum and other children who have larger skill deficits, more challenging behavior.  Trying to get them back into a regular classroom might not be feasible.  And then we have other kids who have made significant gains, but might not be ready for regular education.  Maybe they will go to a less intensive private school.”

Every child in the education program at PCDI is there full time, but in some cases, where a student is doing well, in consultation with the family and the sending district, the student might attend a gym class at the regular school for five days a week.  PCDI staff will work with the regular school staff, and if that goes well, they might try gym and one other class.

There’s one student now who’s on campus at PCDI only two mornings a week, and the rest of the time the staff is with him in a regular school classroom. The goal is to remove the staff entirely.  “We have what we call fading techniques,” Progar says.  Originally the staff might be right next to the child, but eventually we want the staff to pull back.  Eventually we want to get to the point where maybe our staff is in the lunchroom or where we’ll just make periodic visits—‘call us if you need us.’”

Almost half of children diagnosed with autism can transition back to a regular education classroom, Progar believes, if they can enroll in a high quality ABA program before the age of 5. “If you get much beyond that age you can still make progress, but it becomes less likely that the child will be able to make the transition successfully,” he says.

Model Intervention Program

PCDI, whose research and intervention models have been used nationally and internationally, delivers an intensive program for parents and staff, as well as students. Parents must attend training sessions.  The younger the child, the more parental involvement is needed. “It’s great to make changes in the child’s behavior here at school,”  Progar says, “but we want to make sure the parents can implement those procedures at home and also that the child realizes it’s not just the person I just met who’s going to make me do this.  It’s mom and dad too.”

Home programming for PCDI might involve the parent coming in two days a week for at least an hour, then staff members going out to the home for several hours, sometimes more than once a week. With some families living more than an hour away, the staff puts in long hours.  “But that’s an important part of our program,” Progar says.  “There may be particular problems or deficits that occur to the child at home, and it may be easier to work with the child at home on those particular types of behaviors.”

The thorough, labor-intensive program at PCDI comes with a cost, more than $100,000 annual tuition, typically paid mostly by the child’s school district. Buchanan and Progar agree that the quantity and quality of the staff are crucial factors in successful treatment of autism.  In effective ABA interventions there’s no short cut, no substitute for the one-on-one teaching model.

“That takes a lot of skilled staff,” Progar says, “and that’s where expenses are. Most of our money goes to paying people with skilled training. That’s why we have the great outcomes that we do, but it’s not cheap.  That’s our concern.”

Buchanan and Progar also agree that the whole field of special education needs to do a better job in working with state and federal legislators to emphasize the importance of providing necessary resources to address the growing challenges of autism. Progar argues that money spent on autism will be money well spent. “We need to do a better job of educating our legislators and families. The families will have to keep up the pressure on their local politicians as well, and let them know they need these services. It isn’t a question of whether these services are needed or not. They are. They are absolutely needed.”

An Eden student at work at the Salt Creek Grille. Eden Autism in Princeton is a recognized leader in improving the lives of children and adults with autism spectrum disorder, across the lifespan from early intervention and education to the transition to adulthood and employment to residential programs.

Derek

Patti Gianone, whose 7-year-old son Derek is in his fourth year at PCDI, concurs, “It’s been a great experience. Getting into this level of quality intervention has been life-changing.”

She described the parent training that accompanies Derek’s education.  “They keep the parents involved,” she says.  “They continue to train us how to do the same procedures at night that they’re doing during the day.  We go in to school once a week, and once a week they come out to the house.”

Gianone emphasized the importance of the individualized teaching. “There has been such a change in Derek developmentally. It’s been a steady upward progression since his care started more than three years ago.  We’re setting him up for success.”

She notes how Derek at first was limited verbally and couldn’t request things specifically, “but now he’s like a different kid. They showed us how to reward him effectively.”

Derek has also learned to adapt to necessities of daily life like accompanying his parents to the supermarket, waiting patiently in line, and sitting for 15 minutes for a haircut.

Gianone attributes much of Derek’s success to PCDI and its ABA techniques. “We’re so lucky to have him placed there. There are very few schools that can keep the quality so high by concentrating on very few kids.”

She mentioned the administrative and political challenges involved in gaining the support of her home district.  “We had to go through the process with an attorney,” she explained. Every district is different, but outside evaluations are usually necessary to make the case for a child to be placed in a special, private school.

“Most districts are not offering the level of quality of PCDI, the one-to-one, the ABA data-based support, the all-day attention—which is the only way to support what the child is doing. Districts are required to provide a free and appropriate education,” she says. “They may need to send you out of district. The district has to be on board, and the special school has to have an open spot.  When it works out it feels as if you’re hitting a lottery ticket. We’ve never felt so great as the moment we got Derek into PCDI.”

She describes the importance of carrying on the fight to get the best education for Derek.  “I urge parents to fight for what is appropriate for their children.  You have to keep at it. His education will determine your child’s future, what kind of adult he’ll be. It’s an investment, emotionally, physically, financially, putting your heart and soul into it.”

After graduation and the end of educational entitlement, services and funding for adults with autism become particularly scarce. “Autism doesn’t just disappear at the age of 21,” Progar says. “It’s something you have with you the rest of your life.” The PCDI adult division has a relatively small program, with just 28 enrolled and limited capacity to expand.

“Adults with autism have the right to be employed, just as you or I have, and to earn a living to the best of their ability and to live in a nice home of their own—perhaps with other adults with autism, but to have all the opportunities that anyone else would have,” Progar continues. “That’s one of our concerns.”

Gianone also warns about the consequences of taking short-cuts in the present, “It costs a lot of money and time, but everybody has to realize that we’re going to have a lot of adults who will need varying levels of support. It takes time and money now to help make these children more productive adults later on. Taking the easy way out with these children is hurting their capabilities for later in life. We’re going to have a problem with a lot of adults who could have had intervention early on and could be taxpayers and productive citizens in the community.”