SAN DIEGO — Joe and Rafeef Samo knew something was wrong with their younger son when, at the age of two and a half, he began regressing socially. At times, he didn’t appear to be aware of others. At other times, he had tantrums that lasted interminably. He began hurting himself.

These were abundant signs of problems that needed attention. But it took the San Diego couple an entire year to get a diagnosis that their son, now 7, had autism. They were the drivers, saying that their then-pediatrician was dismissive of their concerns.

Their son has improved due to intensive therapy, possibly bolstered by a recent clinical trial with suramin, a repurposed century-old drug for sleeping sickness.

However, the Samos say more might have been done had their son been diagnosed promptly.

Autism spectrum disorder has attracted a huge amount of attention in recent years, but the attention often doesn’t reach the individual level, where families such as the Samos struggle to get help.

Dayna Hoff knows the Samo family’s frustration first-hand. She and husband Todd Hoff created San Diego-based Autism Tree Project Foundation in 2003 after their son Garret was diagnosed with autism. Garret was diagnosed at two years and nine months, and getting that diagnosis took nine months, Dayna Hoff said. After receiving therapy Garret, now 17, is doing well.

“It’s really disappointing to me to hear that this has happened, but it’s not surprising, because that’s why the foundation even exists,” said Hoff, the foundation’s volunteer executive director.

Pediatricians are more responsive than before, Hoff said. However, Hoff said they are at a disadvantage in detecting developmental delays. They simply don’t see the children enough to have a comprehensive understanding of their development. They usually see children when they’re sick.

In 2005 Autism Tree started a free preschool screening program to identify children at risk of developmental delays, including autism. Children found to be at risk are referred to specialists for a definitive diagnosis. The program works with preschools in San Diego and the San Francisco Bay Area.

“Every preschool director I’ve ever met, and teachers, have an absolute sense of urgency when they see that a child isn’t meeting a developmental milestone,” Hoff said. “It really pops out to them when a child isn’t meeting a milestone because there’s all these other children right next to them.”

Atypical autism

Rafeef Samo said one reason for the difficulty in getting her younger son diagnosed is that he didn’t display the most obvious signs of autism. Up until shortly after 2 years old, he appeared to be on a mostly normal development path.

“He didn’t have any of the normal autism markers in terms of stimming or lack of social engagement,” she said.

“He had a couple of words here and there he actually met all of his normal milestones. He actually walked earlier than my older son, started saying his first words earlier, crawled earlier, slept through the night.”

“But as he got older, we noticed he was getting scared being around my son and his friends. And initially we thought maybe because they were being too rough with him. Whenever new people or new kids would come by, he would kind of get afraid and cling on to me. When he was about two and a half, we saw that his language was not progressing. It actually slowed down entirely and he was getting very, very hyper.”

“And he wouldn’t respond to his name. He wouldn’t look at us,” Samo said. “He did not look like he was present in what he was doing.”

In January 2013, a friend who had observed Samo’s son at a birthday party privately emailed her, urging her to get help for her son. So the Samos went to their pediatrician, who brushed off their concerns.

“She was telling me things like, ‘Oh, your mom just moved in and he’s reacting to that,” Samo said. “Oh, you got pregnant. Oh, your older son started school. He doesn’t have a playmate anymore. You’re really reading into it, he’s not showing the markers. He met other milestones. But I know my son, and I have videos before where he was kind of talking before and like smiling and things like that when he was about a year and a half and having a good time with his older brother.

“And then slowly things started to shift. I would often joke that I was a very difficult child that this was just karma coming back to us. After a while, my mom said I wasn’t like that. I was a very spirited kid but wasn’t destructive and he was trying to do things where he was harming himself.”

In May 2013 the Samos succeeded in getting their son referred to a psychiatrist, who saw the boy in July. He told them their son didn’t have autism, perhaps ADHD.

Getting help

As their son’s behavior continued to deteriorate, the Samo family went through a crisis.

“By July-August things were just completely falling apart. It was just spiraling out of control,” Samo said. “So I started doing my own research online.”

She came across a program called First Five San Diego, which provides a variety of free services, including developmental checkups, for those under 5 years.

After screening, their son was referred to Rady Children’s Hospital — San Diego.

There, in October 2013, the Samos were told that their son likely had autism. To be sure, they needed to put their son through a formal assessment procedure called ADOS, Autism Diagnostic Observation Schedule.

“Go back to your insurance,” Samo said she was told. “Force them to do an assessment. Push for it, push for it, because we really do think your son is showing emerging signs of autism.”

On Dec. 12, 2013, their son was assessed, and a definitive diagnosis came back of autism.

From the beginning of their quest to the official diagnosis, an entire year had passed.

“And at this point our son was three years nine months when he finally got the diagnosis,” Samo said. “Whereas most kids tend to be diagnosed before the age of two or by three.”

Therapy actually began in February 2014, with speech and occupational assistance first, then behavioral therapy. By that time, the Samos had switched to a different pediatrician.

“We’ve come to find out since then that others who went to the same pediatrician had the same experience where she dismissed them and then their children had to pursue other avenues before finally getting their diagnosis,” Samo said.

They’re happy with their new pediatrician.

“We drive 35 minutes just to go see him even though we have a clinic with the same insurance and everything 10 minutes from our home,” Samo said. “He does a great job with our son and really knows how to work with him and make him comfortable.”

During that time, the Samos moved north, placing them in the highly regarded Poway Unified School District, which Samo praised as a “godsend” for its special needs program.

“And they really helped him a lot behaviorally. But he was still struggling,” Samo said.

© 2017 The San Diego Union-Tribune
Distributed by Tribune Content Agency, LLC

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