At first, Ellen and David Arvayo considered their son Robert’s grit and determination to be qualities of a competitive kid. Robert wasn’t a quitter, and he didn’t like to lose. Sometimes it was learning how to ride his bike and repeatedly getting up after falling. Other times heightened emotional reactions to losing youth soccer games. But when those behaviors started to seep into the rest of Robert’s life, Ellen and David started to wonder if something more was going on.
Robert was first diagnosed with ADHD, which fit some of the signs he was showing, but not all behaviors his parents were noticing. That’s when the Arvayos were referred to SARRC, and Robert was diagnosed with autism at the age of 7.
“We were shocked because we didn’t really understand the spectrum part of autism, and we were convinced he didn’t have autism because he was extremely verbal,” Ellen recalls. “We had many misconceptions of autism. But when we received the diagnosis the greatest feeling we had was relief. We could now help him, and it brought us hope.”
With an official diagnosis in hand, the Arvayos were able to enter SARRC’s JumpStart program, though they were at the top of the age range that the program serves (children younger than 8). JumpStart is a six-week program that helps families who are new to autism by providing important information, support and strategies from a licensed Board Certified Behavior Analyst® (BCBA) for customized coaching sessions. There was definitely some ground to be made up, but the Arvayos and SARRC were determined and ready to learn.
“Research always says early intervention is key to best possible outcomes, which made Ellen feel discouraged that she missed out on early help for her son. But she was determined,” says SARRC Senior Clinical Consultant Brittani Harris, BCBA, who guided the Arvayos family through SARRC’s JumpStart program. “She came to the program enthusiastic in wanting to learn how to support her child.”
For Robert, now 8, it was learning how to navigate through transitions – ending a game or stopping an activity – as well as verbalizing his disappointment differently. Rather than getting upset when he loses a game, Harris taught the Arvayos to encourage and practice other reactions, such as saying, “good game” or “I need a break.”
As with all SARRC programs, the approach to intervention is individualized for each client and family. Harris was careful to involve him in discussions about strategies and challenges on how to best support his needs and wants. Usual behavior therapy techniques were also tweaked to better fit Robert’s unique needs. Harris says JumpStart coaches aim to tailor sessions to each child and parent(s) and caregivers based on their communication needs. For example, rather than language learning, for Robert, it was a matter of learning the right words for specific situations.
These lessons were brought home, and the entire family went to work to put the tools into practice. Ellen describes the family’s time with JumpStart as a lifeboat.
“We were floating at sea afraid of drowning, not knowing what to do, how to be with Robert, how to treat him or work things out with him,” she says. “JumpStart gave us focused tools to help us with Robert. It gave us a lay of the land so we could understand where we were and where we needed to go.”
Partnering with Providers
Closing the gap between diagnosis and intervention is one of SARRC’s priorities. To support this mission, SARRC offers training on evidence-based screening practices that are easy to execute and encourages pediatricians to screen for developmental delays starting at 12 months, which is six months earlier than the screening ages recommended by the American Academy of Pediatrics.
“We believe it is critically important for all healthcare providers, but especially pediatricians, to recognize the importance of early identification and early intervention for autism. It is also important that they recognize the need for a formal diagnostic evaluation sooner than later,” says Christopher J. Smith, Ph.D., SARRC’s chief science officer.
When a screening questionnaire indicated concerns, Smith says, parents should be referred for a developmental evaluation because only a formal diagnosis will open the door to evidence-based treatments.
“Delays can be subtle and may not cause any problems for parents in day-to-day lives, so the general inclination is to wait until they do,” Smith adds. “That leads to lost time in the early developmental time period when intervention can do the most good. If parents act on subtle differences and seek an evaluation, they will get more definitive information about their child’s delays from experts who know what to look for and then advise them appropriately. Parents have nothing to lose by pursuing an evaluation. If they don’t agree with the results, then they can put it in a drawer until they are ready. Nothing happens automatically as a result.”
Making Up Time
For the Arvayos and their son, time has been of the essence. And the family has worked hard to help their son make strides. Learning that Robert’s frustrations and outbursts weren’t simply tied to him being a perfectionist but rather that he perceives the world differently gave his parents a better understanding of how to help him.
“We have just begun our journey,” Ellen says, excited about the future. “The most significant changes we have seen are with challenging behaviors. Because JumpStart gave us focused help with the most immediately needed behaviors, we have been able to navigate his challenging behaviors and get him motivated and turned around a lot more quickly. We have learned where to give and where to stand firm so we can help him to get and stay on track with tasks, schoolwork and activities.”
And seeing this renewed confidence in parents is what Harris likes most about her work.
“I love what I do. I’ve been doing this for 13 years at SARRC. The bigger thing – as much as I love seeing progress with my clients – is the parents. We gather information on the parents’ confidence and knowledge before they start JumpStart and at the end of their participation. When you see those scores change from pre-service to post-service, that is it! You can actually see the confidence in these parents. They go from feeling unsure of where to go and what to do, to knowing they’ve got the tools to navigate their child’s diagnosis.”
Story by Ginger Scott