Joyce Mauk, M.D., CEO and medical director of the Child Study Center, believes the increase in more kids being diagnosed is because examiners are now more aware of the autism spectrum than ever before because of the attention autism has gotten in recent years.

So what exactly is the spectrum?

Dr. Mauk, who is a Cook Children’s pediatrician and board certified in pediatrics and neurodevelopmental pediatrics, says that most human characteristics aren’t spread evenly across the public.

She compares it to the ability to draw. A few people are excellent. Some are natural artists. The majority of us do Ok and some of us have no skill at all.

Dr. Mauk says that’s also the way to look at the autism spectrum, and some other disorders as having a range or continuum. Children are generally diagnosed with an autism spectrum disorder in the preschool years. Those at the severe end of the spectrum are diagnosed at an earlier age and those at the milder end are diagnosed later. Dr. Mauk says this is because the severe end is associated with more severe developmental delays such intellectual disability or mental retardation.

More severe problem behaviors (self-injury, aggression) are likely to be nonverbal and more likely to have a known genetic cause (etiology).

At the milder end are children whose cognitive abilities are in the normal range and have less significant problem behaviors (rhythmic, repetitive movement, or stereotypies, and rigid behaviors).

“An experienced clinician will make the determination of degree of severity,” Dr. Mauk said. “There is no specific test that will alone determine the diagnosis or the level of severity. In the past children at the milder end of the spectrum would not have been diagnosed with autism. They may have had a diagnosis of Asperger Disorder or a language disorder with atypical features. In general those on the mild end have a better prognosis and will need less lifetime supports.”

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But the research may simply be a matter of parents being more mindful of autism than they were previously.

“What is telling is that the overall prevalence of developmental disabilities hasn’t increased,” said Joyce Mauk, M.D., CEO and medical director of the Child Study Center. “Some of this is diagnostic substitution. Many more children with language disorders and some unusual features of behavior are now being diagnosed with autism.”

Dr. Mauk, who is board certified in pediatrics and neurodevelopmental pediatrics, said examiners are more likely to diagnose children with more subtle or mild symptoms of the autism spectrum than ever before because of the attention autism has gotten in recent years.

The Centers for Disease Control and Prevention and National Center for Health Statistics stated reported that 1 in 45 children were diagnosed with autism in 2014, a leap of nearly 80 percent from 2011 to 2013 (1 in 68 children were diagnosed during that time period).

“The survey changed from 2013 to 2014 and the categories for autism were more inclusive in the most recent study,” said Lena Zettler, director of Psychology at Cook Children’s. “They included other developmental delays. The incidence isn’t necessarily changing, but awareness is.”

Both Dr. Mauk and Zettler agree that the focus should remain on the science we know.

Autism is more common if there other family members who are on the spectrum. Higher incidence in autism can occur if:

• The father is older
• Pregnancies are less than two years apart
• Preemies are at a higher risk for developmental delays (including, but not limited to the autism spectrum)

The survey found that the majority of children diagnosed were boys than girls, with a 75 to 25 ratio. Fifty-nine percent were identified as non-Hispanic White.

Another key factor that some point to is the fact that more than 67 percent of the children who were diagnosed had at least one parent with more than a high school education, which could mean they are more likely to be aware and educated of the symptoms of autism, making for quicker identification.

“There is of course a lot we still don’t know about the underlying factors that cause autism, but I think the fact that people are becoming more aware is a great start,” Zettler said. “It makes for quicker diagnosis and care for the child.”

Over the following months, Isaiah began to show the classic signs of Autism: regression of previously acquired skills, repetitive drumming, hand stemming, staring into space for brief periods of time and desiring less social interaction. At the age of 3, Isaiah transferred from Early Childhood Services (ECI) to public school; it was there the Hensons were informed of the possibility of autism. By the age of 4 years old, Isaiah received an “official diagnosis.”

“Though I saw all the signs of autism, I did not desire the label of ‘autism,’” Lotoya said. “The onset shock was overwhelming. It was difficult at times to mask my emotional state. I would take tearful breaks, relying heavily on the foundation of my faith. When telling others about the diagnosis, tears began to flow before my thoughts could gather their full explanation. This is where I believe that the cycle of grief began.”

Lotoya did not grieve because she didn’t love and accept her son as he was, but because she knew that she had to face a new reality. Things would never be “normal;” the symptoms would not go away with short-term, “intensive therapy.”

“This now would be a possible life-long journey and the son I dreamed of would be different with limited, ‘normal’ moments in time,” Lotoya said. “I went into survival mode by focusing on the only thing that I had control over: the ability to learn, share, develop, grow and strategize to ensure that our son received the best care available. I let myself grieve through acquiring knowledge. I lived in a fog of hope.”

Other members in Lotoya’s family had autism. She said that experience helped her appreciate that not every person with autism is alike.

 “The one significant thing that I have learned is that not all people with autism are the same,” Lotoya said. “Some kids are nonverbal with limited behavioral concerns, while others are highly verbal and creative, but have difficulty with sensory and other needs. The statement is true: ‘If you’ve seen one person with autism, you’ve seen only one.’ "

Isaiah is 5 years old today. Lotoya said his smile is special because of a dimple in his cheek that “lights up a room.” Isaiah loves to give long hugs, kisses on the check, and a good tickle.

“Anyone who meets him is consumed with the joy on his face and the twinkle in his eye,” Lotoya said. “The stress melts away when he meets me at the door after coming home from a long day at work.” Right now, in addition to public school, Isaiah attends Easter Seals North Texas Autism Treatment Program four days a week.

Lotoya also credits Cook Children’s, and specifically Deborah Vert, D.O., for helping her through some of the tougher times while raising Isaiah. The medical center gave her an avenue to share her experience and ideas, and to help better serve families through the Family Advisory Committee and the Autism Patient Safety Committee.

“Cook Children’s has helped our family by providing specialized therapists who are compassionate toward the needs of both the child and caregiver,” Latoya said. “They were very patient, accepting of my endless questions, suggestions and various training that I would acquire over the years. Isaiah’s plan of care was always individualized to his skillset and needs. Adaption and flexibility were at the core, and exemplified quality care.”

Currently, Lotoya helps families by sharing her experiences, assisting with the navigation of services (applied behavior analysis, occupational therapy, speech, etc.), providing encouragement and sharing resources and training material.

“This gave me a sense of purpose and a way to turn ‘lemons into lemonade’ and see the blessing in what others see as pain,” she said.

By providing guidance for strategic planning, parents get a sense of power and hope, instead of helplessness. Lotoya encouraged that all parents should ACT: Assess the situation; Call someone if life seems to become emotionally overwhelming; Take the lead as the coach of your child’s care team through acquiring knowledge.

Looking at life through the lens of autism has reminded Lotoya what life is really about.

“I was so career minded that I missed out on the essence of life itself,” she said. “I have learned how simple life really is. My mind had to be re-conditioned to not always be in control. I now strive to be selfless on a day-to-day basis; though I have not yet arrived.”