VIDEO: Autism Resources: Support from Those Who 'Live it'

The pair sat on the couch as Andrew’s mother guided his finger to responses written in magic marker. 

“Andrew, why do you like to paint,” Jan Randall asked her autistic son. "Because it makes you happy?" she continued. "Because it makes you proud, or because it’s fun?” she asked moving his hands over each multicolored response.

“It’s fun,” replied Andrew.

“Is it relaxing?”

“Yes,” he answered.

The activity is a daily occurrence. Randall, 53, must prepare Andrew to answer questions regarding basic activities by writing color-coded possible responses as a visual aid. Without first going over what's on the agenda, even just a few minutes ahead, is, at best, confusing for Andrew. 

Andrew's autism calls for organization which is usually achieved via visual promps. His condition is a pervasive developmental disorder which makes it difficult for Andrew to discern appropriate amounts of sensory information. Andrew’s need for organization and preparedness is a common trait for autistic individuals.

This commonality is a facet of autism that now affects one in every 110 children Randall is intimately aware of, not only as a parent, but as the Resource Specialist for Swansea’s non-profit Community Autism Resources, or CAR.

Randall, along with a handful of fellow part-time staffers and even fewer full-time staffers, have helped to network over 2,000 families who have been touched by ASD since the organization’s inception in 1992. Funded only by the state and through private donations, outreach has grown to span across Southeastern Massachusetts.

When Andrew was diagnosed with regressive autism as a toddler in 1989, Randall suffered, she felt, as the only parent of an autistic child in Seekonk.

“We’re known around town [especially] due to Andrew’s size,” said Randall.

At 6-foot 3-inches tall, Andrew has always hovered within the 90th percentile for his age bracket’s height and weight. And as a teen, Andrew was in crisis, at his worst, putting holes in walls.

The former stay-at-home-mom-turned CAR volunteer shifted from a generally-practiced, Pavlovian response of subduing unruly behavior to one more sympathetic. This yielded great results for the Randalls. 

After coming home one day upset from school, pressing himself into a corner, Randall tried to ask her son what was wrong - a question she wasn’t sure he could answer.

“Dave up the apple trash,” responded Andrew’s, referring to a classmate who had thrown away his apple, causing emotional turmoil.

What followed next was a tearful release of the pent-up frustration. 

“He was able to answer a question I didn’t think he could. It was such a strong reminder not to underestimate him. . . We [at CAR] don’t look at the behavior as a behavior. We look at it as communication,” said Randall.

This empathetic reaction has been a method of communication at CAR. Parents who call looking for solace, often discovering the outreach program through word of mouth, receive trained advice, advocacy, resources and that sorely sought shared experience.

According to Randall, it’s one thing to speak with a professional who understands autism/Asperger syndrome, it’s another to speak with a parent or guardian who lives it.

“We don’t go home and not live autism. We live it,” said Randall.

Theories on the Disorder

According to the National Institute of Child Health and Human Development, Austism Spectrum Disorders (ASDs), such as autism and Asperger syndrome, impair communication skills and social behavior and increase repetitive "stereotyped" behaviors.

Randall believed that the MMR vaccine spurred her son's latent predisposition to autism in his infancy.

"If someone's at high-risk for developing lung cancer and they smoke, they're more likely to get it," said Randall.

Though Randall pointed to the vaccine, the Center for Disease Control does not recognize a correlation between the two. Instead, the CDC cites a 2004 study done by the Institute of Medicine which stated that autism is generally diagnosed at two years of age, the same time that vaccine is dispensed. The study found these two events are mutually exclusive.

Nearby Support Systems

But there are local resources. CAR supports families through many branches: the school system, professional resources, counseling, Medicaid, legal advocacy and family fun days such as movie nights and the annual Hearts and Hands Walk for Autism. If a family member within the spectrum is suffering through a severe response to overstimulation, or a myriad of other factors, parents are surrounded by support from those who understand.

In schools, one vastly successful program facilitated by CAR is Circle of Friends, which matches challenged students with peers. The program is a two-way street: The students learn to communicate with one another and develop a tolerance for differences elicited by ASD. Circle of Friends is most constructive during the elementary school years.

Andrew benefitted from Circle of Friends in his youth, changing a former bully into an ally who was placed in his circle. 

“If you front-load for these kids, have as many resources as they need. . . If you put those supports in place, it’ll be better for the kid. It’s pennywise and pound foolish not to put the proper supports in place,” said Randall who emphasized that too little support means more time and money spent by the school in years to come.

Now, at 25, Andrew thrives on variety and hard work. He helps with chores from taking out the recyclables, to taking the dry laundry down from the line. Andrew was given the support he needed and was communicated with in a way that has helped him meet the challenges of changing it up. He works the hoe at a local farm every summer, plays hoops at the and paints in his mid-twenties.

"He loves work. He's a workhorse," said Randall.

Other sources of support offered by CAR are clinics by private appointment.

These clinics teach guardians how to utilize visual-system day planners, to plan for IEPs (Individualized Education Plans) and how to effectively mitigate communication issues and behavioral challenges specific to each child. 

All of CAR’s services, including a lending library full of literature about ASD, is provided free of charge thanks to generated funds.

"The most important thing people need to know is that all the money we raise stays right here in Southeastern Massachusetts and goes into [all of CAR's programs]."

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