The Autism Puzzle in Utah County

The Autism Puzzle in Utah County

A look at the state’s unusual rates Stories and struggles from across the spectrum

April 2016 | A special edition of the

Daily Herald • heraldextra.com

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CONTENTS

ONLINE & IN THE DAILY HERALD Find more coverage of autism and local influences online at heraldextra.com, along with the rest of the stories in the magazine.

Changing Utah lives for decades

11 THE LATEST STATISTICS The rates of autism diagnosis recorded in Utah are continuing to trend higher than the rest of the U.S.

19 OPTIONS AND HOLES

IN EDUCATION

SAMMY JO HESTER, DAILY HERALD

Nearly two decades ago, Janeen McFadden became an autism specialist for GIANT Steps to develop curriculum to help Utah’s children at a time when other professionals were saying there was no need and there never would be.

Universities looking to build an ‘army’

Utah County school districts and individual programs aim for early intervention

38 LDS MISSIONARIES WITH AUTISM An ASD diagnosis doesn’t dissuade a large number of youth from dedication to their faith

SPENSER HEAPS, DAILY HERALD

Both UVU and BYU have created classes and conferences targeted at autism and are in the process of gaining approval for other programs.

But training the army of individuals needed to treat autism isn’t just happening in classrooms.

Diagnosis is no hurdle

42 RESOURCES Organizations, websites and groups available to families and those with autism

Orem High School’s Aram Compton isn’t shy about letting you know that he is a high-functioning person with autism, and it hasn’t stopped him from participating in athletics and being part of a team.

SPENSER HEAPS, DAILY HERALD

Since 2010

, Apex Behavior Consulting has been providing individual group Applied Behavior Analysis (ABA) services and Positive Behavior Support (PBS) to children, teens and adults with Autism, Intellectual Disabilities and Brain Injury in home and community based settings. We believe that through ABA and PBS that people can find different and adaptive ways to live their desired quality of life. We specialize in behavior change and all our programs reflect the most current, effective and evidence based interventions. Voted Best in State in 2015 for education and advocacy, Apex continues to serve families from Provo to Ogden.

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From the editor

Staff Publisher Bob Williams

Managing Editors Jordan Carroll Scott Tittrington

Writers Cathy Allred Braley Dodson Katie England Kurt Hanson Stacy Johnson Karissa Neely Genelle Pugmire Sammy Jo Hester, Daily Herald

Children play and sing during the Giant Steps music class taught by Janeen McFadden at Foothill Elementary in Orem on Tuesday, Feb. 23, 2016. McFadden has been working with the autism spectrum since the 1990s.

Clarity from confusion This April, we felt it was more relevant than ever to shine additional light on the state of autism in Utah County.

Not only is it Autism Awareness Month, but other momentous occasions await; Utah Valley University will soon break ground on its Melisa Nellesen Autism Center.

As the latest statistics show, more children, at increasing rates, are being diagnosed with autism spectrum disorder in Utah. Professionals are no closer to pinpointing why Utah rises above the rest of the United States in these trends, or even what leads to autism to begin with.

Because of this, and the many health care, educational and social issues facing families with children or spouses who have autism, we felt it was imperative the local community be aware of the few facts available.

It’s been an enlightening journey for us. Many of our own staff have children, nieces, nephews and friends with autism. It is something that is part of their daily life, beyond the months of work spent compiling data, personal stories and resources for this magazine.

As our reporters researched and interviewed dozens of local authorities and families, one thing is clear. Autism is as diverse as the personalities of the people in Utah. It is not a disorder that can be cleanly categorized in a box, nor can those who have 4

The Autism Puzzle in Utah County

autism fall into a handful of clear delineations. It is complicated.

There is much unknown — that perhaps we will never know. And for those attempting to address it, oftentimes the support, interventions and funding for these developmental disabilities can be just as confusing, isolating and difficult to navigate as autism itself.

Our hope for you is that you might feel greater support, gain understanding and exude compassion for the thousands in Utah who live with autism. With that in mind, the Daily Herald is simultaneously launching a fundraising effort throughout the month of April in Utah County to raise awareness and funds for autism research and support.

You may donate whatever you can to directly support the innovative program at UVU working to support individuals on the spectrum, their families and much-needed professionals who serve them. We believe the autism work being done there now and in the future will benefit generations of Utah Valley kids, families and educators to come.

Donations can be made at supportuvu.org/ dailyheraldautism, where they will be generously matched by Doug Smith Autoplex during Autism Awareness Month.

Jordan Carroll Managing Editor

Keri Lunt Stevens Monica Villar Neil Warner

Photography Spenser Heaps Sammy Jo Hester Dominic Valente

Online David Bilodeau Stacy Johnson Phillip Morgan Janice Peterson

Advertising Craig Conover Heather Wolsey

1555 N. Freedom Blvd.

Provo, UT 84604 Phone: 801-373-5050 newsroom@heraldextra.com

Bryan Howell, 3, crosses a wood staircase on Monday, March 14, 2016 at the Kids on the Move Autism Center in Orem.

Spenser Heaps, Daily Herald

Autism What is it?

Wide spectrum, years of long waitlists

story by Braley Dodson

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34-year-old man may not be able to speak or feed himself and wears diapers.

A 14-year-old girl may have no problems communicating and be considered a musical prodigy.

A 10-year-old boy might only express his wants and needs through hand-drawn pictures.

An outsider might not realize a teenager has autism until that person confides in them.

“If you’ve met one person with autism, then you’ve met one person with autism,” said Terisa Gabrielsen, assistant professor in the counseling psychology and special education department at Brigham Young University.

Autism spectrum disorder is a neurodevelopmental, social communication disorder. It is not a disease. Some people consider it a disability, others a condition. Some people on the spectrum consider themselves neurodiverse, not disordered or disabled.

Some people use the terms high or low functioning to describe someone with autism, and others prefer to say an individual has a lower language level or is low verbal. Again, it depends on personal preference.

When referring to someone who has an autism diagnosis, “people-first” language is also often preferred. Instead of saying “an autistic child,” it would be better to say “a child with autism.” Peoplefirst language places the individual before the disability, instead of entirely defining someone by the diagnosis.

Nationwide, about 1 in 68 children have autism, but in Utah, 1 in 54 will be diagnosed. For every five boys diagnosed with autism, there is one girl.

According to the National Autism Association, about 40 percent of children with autism don’t speak. Some might have spoken, but regressed, and some will start speaking later in their lives. About 25 percent of people with autism are nonverbal,

according to Autism Speaks.

What’s causing that increase is unknown.

Part of it can be attributed to better detection or reclassification of other disorders, but autism is still on the rise, and researchers don’t know exactly why.

More than 65 genes account for autism, and research is still ongoing. The hope is that with more research, there will be interventions specific to the genetic type of autism people have.

People with autism may respond inappropriately in social situations, have difficulty forming friendships, be highly sensitive to changes and be dependent on routines.

Autism is considered a spectrum disorder because it impacts everyone differently, and ways to classify it can be misleading. Individuals might be higher or lower functioning depending on the day, but those terms are still needed in order to classify someone to treat each person and find out how much support he or she needs.

“There are two sentences that you can say that apply to all individuals with autism,” Gabrielsen said. “One is that they have some degree of social communication difficulties or have had some degree of social communication difficulty, and that they have had some degree of either repetitive or restrictive interests, or sensory difficulties, but other than that, there is no one slam-dunk symptom that all people with autism have.”

The fifth edition of the “Diagnostic and Statistical Manual of Mental Disorders” classifies three levels of autism by severity, but even that’s vague. The three levels, with the third being the most severe, are generically defined as requiring support, requiring substantial support and requiring very substantial support.

The DSM-5 also eliminated the Asperger’s syndrome diagnosis, grouping it under the autism umbrella, and encourages an earlier diagnosis of autism. Previously, the criteria for an autism diagnosis was geared toward identifying the disorder in school-aged children.

Although Asperger’s syndrome is no longer a diagnosis, many people still identify with it.

“When you talk about the spectrum in people’s minds, those are totally different things, Asperger’s versus classic autism,” said Teresa Cardon, director

of the Melisa Nellesen Autism Center at Utah Valley University.

At the ends of the spectrum are individuals who are low functioning or high functioning, but the middle is filled with people who need some level of support, which includes people who are minimally verbal. Those who can communicate their needs and wants, even if it’s through pictures and not words, are considered functional.

“With a decent amount of support, they can function pretty well,” Cardon said. “Without support, that’s a different story.”

Symptoms and detection

Parents usually start suspecting their child has autism when they notice a lack of communication, or if communication starts to regress. Parents will often tell a professional their child doesn’t look at them, isn’t social, doesn’t cuddle, doesn’t connect with others or doesn’t want to be comforted.

Many signs can be spotted when a child is between 18 months and 2 years of age, but autism can be diagnosed as early as 12 to 14 months of age.

The average age of diagnosis in Utah is 4 years old, but many aren’t diagnosed until they start attending school.

The earlier the diagnosis, the better, because that means interventions can happen sooner, while the child’s brain is still developing.

“If you can intervene as quickly as possible, you can help them catch up,” Cardon said.

There’s no medical detection for autism, but things like brain scans and eye tracking are being used to research it. There isn’t a blood test, brain scan or fingerprint test to detect autism. Instead, it’s diagnosed through a series of observational, behavioral assessments called the Autism Diagnostic Observation Schedule, or ADOS, which consists of a series of scenarios set up to see how a child responds, looking for the presence of abnormal behaviors and the absence of normal ones.

Other tests exist, including a three-hour interview with the parent.

But despite an urgency for early detection, it’s not always feasible locally.

“In Utah County, we really struggle with diagnostics,” Cardon said.

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A physician, psychologist or speech language pathologist can diagnose autism, but for the trickier cases, a professional who has extensive autism knowledge is needed. For those cases, there’s fewer than five people in Utah County who can diagnose a child with autism, so many families head north to Salt Lake City or join a waiting list, wasting valuable time that could be used treating it.

“Imagine being told the earlier your child starts intervention, the better prognosis for future independence, and you’re told we’ll see you in 6 to 12 months to get that diagnosis, and then you get the diagnosis, and you’re told there’s a waitlist for 6 to 12 months to get services,” Cardon said. “And you’ve been told, early is better, and all of a sudden you land on a waitlist. It’s not OK.” Parents can access treatment immediately through the school system without a diagnosis, but those are basic services and often understaffed. For additional treatment, a diagnosis is needed for insurance to cover it. Many insurance companies have only created autism coverage plans in the past year.

“It’s not that you can’t get treatment, you can’t get it covered by insurance,” Gabrielsen said. “Everyone can get treatment. The question is if they can pay for it.”

Even a year ago, the state held a lottery system for parents with Medicaid to receive a waiver for autism treatments to be covered for their children.

Sammy Jo Hester, Daily Herald

Ailee O’Connor, 14, laughs with her mother Jeanne during dinnertime at her home in Saratoga Springs on Monday, March 7, 2016. Ailee is low functioning on the autism spectrum and was only diagnosed with autism about five years ago.

Myths vs. facts There are countless myths surrounding autism. Learn more about those that are straight myths, and those that hold some truth.

MYTH: Vaccines cause autism.

Multiple studies have shown there is no connection between vaccines and autism.

VARIES: People on the spectrum are savants, geniuses or are bright in math or music.

Sometimes this holds true. “The truth to that is it is a spectrum,” said Teresa Cardon, director of Utah Valley University’s Melisa Nellesen Autism Center. “Some may be really good at things, some may not. Some may not have a particular skill that is really amazing.

Often, they have interests they become subject matter experts at.”

VARIES: Air pollution, microwaving food, freeways or watching television causes autism.

Maybe. There are correlations between some things and autism, but research is being done, and just because a study shows something may cause autism in mice doesn’t mean it flows over to humans. Additionally, some autism studies that claim something

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genetic, but it isn’t inherited.

causes autism feature a small sample size of individuals, and headlines can sometimes make a study look more important and validating than it is.

very attached to their caregivers, parents and teachers.

MYTH: After someone with autism reaches adulthood, they don’t need treatment.

FACT: The more children you have, or the older a father is, the more likely it is that your child will have autism.

VARIES: Everyone with autism spins and rocks in a corner, spins objects or lines them up.

The human brain is capable of changing and making new connections throughout the lifespan.

There appears to be correlations of these two factors and autism, but research is still being done to see if these factors are a possible cause.

VARIES: People with autism can’t make eye contact.

MYTH: “Miracle” mineral treatments, snake oils, flashing lights, cleanses, hyperbaric oxygen therapy, detoxifying clay baths, etc. will cure autism.

Again, it’s a spectrum. For some people with autism, an outsider might not even know they have autism. For others, they’ll never be able to speak, feed or dress themselves. Autism is different with each person who has it.

MYTH: People with autism have no empathy.

This is a complete myth. In fact, some research states that people with autism are so empathetic they can’t censor everyone’s feelings and emotions, get overwhelmed and shut down because they can’t filter it all.

MYTH: People with autism aren’t affectionate.

Many people with autism become

The Autism Puzzle in Utah County

Again, it varies along the spectrum.

VARIES: People with autism can’t lead a normal life.

It depends on where the individual falls on the spectrum. Some people will go on to lead normal, independent lives with good jobs and families, and others will require intense support for their entire lives. For some, others would never know they have autism unless they self-disclose.

FACT: Autism runs in families.

Some components of autism are

There is no cure for autism, but many parents will go through several different interventions over the course of a child’s early life, often wanting to not leave any stones unturned. “Miracle” treatments are pseudoscience, and some of these treatments can carry severe health risks. If a treatment is effective, there will be multiple studies proving so, there won’t be a contract and you won’t have to pay up front.

Our Mission is to Help You! On our website you will find: • Resources and available service providers • Evaluation and treatment options • The Fast Start Checklist for the newly diagnosed • Grant information • How to get involved • Info on the autism specialty license plate • Donate now!

www.autismcouncilofutah.org

Dominic Valente, Daily Herald

Jordan Norton plays with his daughter Lexi at North Park on Friday, March 11, 2016 in Spanish Fork. Norton falls on the autism spectrum, but despite his adversities he was able to serve on an LDS mission and leads an independent life.

But a diagnosis isn’t always certain. Gabrielsen estimated about 25 percent of children she sees come in for research have been misdiagnosed with autism.

Treatment

Treatments for individuals with autism vary on where they fall on the spectrum. But often, treatment includes seeing a variety of therapists, which can include behavioral analysts, speech pathologists, occupational therapists to help with fine motor difficulties, physical therapists and even social workers to help families since many who have an autistic child end up with one working parent.

“The biggest problem for parents is there’s no one right path, there are multiple paths you have to cover simultaneously, and that’s what makes it so bewildering for a family, to wade through that,” Gabrielsen said.

Another common occurrence — people with autism end up needing medications to deal with anxiety and depression. They can also require support that comes in the form of learning job interviewing skills, how to live on their own and how to manage their own finances.

Public schools do what they can, but have to work with limited capacity, funding and training.

There’s also a deficit of people in Utah County who can help people with autism, whether it’s through diagnosis or treatment.

“We’re playing a little bit of catch up,” Cardon said.

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The Autism Puzzle in Utah County

In Utah County, there are 18 certified behavior analysts who are required to supervise autism programs. With 4,000 new autistic children who recently qualified for Medicaid services, there needs to be more professionals to oversee those programs.

“We cannot service all the children in our state right now,” Cardon said.

And then there’s the services cliff, she explains with a “clunk,” of when someone with autism reaches the ages of 18 to 22 and exits the public education system.

But the tsunami of people who have aged out of the public school system still need support.

“Depending on the amounts of support needed, an individual who needs a great amount could go on through the rest of their lives,” Cardon said.

Support doesn’t come cheap, though. On top of medical costs, the Centers for Disease Control and Prevention estimates behavioral interventions can annually cost between $40,000 and $60,000 per child.

A growing awareness

Twenty years ago, Cardon said only a handful of children per 10,000 were diagnosed with autism, so few that a teacher in her master’s program asked why she’d ever choose to study it because she’d only have one or two clients in her caseload and would be limiting her career.

Just 16 years ago, 1 in 150 children were diagnosed with autism nationally.

Three years ago, there were between 7 and 10

students in UVU’s Understanding Autism course.

Last semester, it was offered twice, with about 60 people in each class.

Now, in those classes, a professor can ask students to raise their hand if they know someone with autism, and 90 percent of the class will. Twenty years ago, there would be two or three. Without fail, a few students in the class will approach the professor and declare they either suspect they’re on the spectrum, or a loved one is.

With an increase in diagnosis, though, also comes an increase in understanding and awareness, creating more hope and decreasing the stigma for a lot of families.

“Autism is not a death sentence, and a lot of people fear that,” Cardon said. “Some autism is harder than other autism, but really, there is a lot of hope. There are a lot of gifts and strengths.”

When a child is diagnosed, most parents feel helpless, and Cardon and Gabrielsen, along with multiple local professionals, want to end that.

Another struggle is encouraging employers to take a chance and hire employees who have disclosed they have autism. These employees, Gabrielsen and Cardon said, can come with valuable skills, like encyclopedic knowledge of a certain subject or being someone who enjoys doing the same thing over and over again.

“That would be a big step forward for people with disabilities,” Gabrielsen said.

AUTISM

IN UTAH COUNTY Whether it’s related to genetics, pregnancy problems, air pollution or a myriad of other possible reasons, one thing is for sure — the prevalence of autism spectrum disorder (ASD) is on the rise.

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STORY BY KURT HANSON

ccording to the Centers for Disease Control and Prevention (CDC), about 1 in 168 children in the United States have been identified with autism spectrum disorder.

According to a new study by the Utah Registry of Autism and Developmental Disabilities (URADD) released in March 2016, Utah has one of the highest prevalence rates in the country with about 1 in 50 8-year-old children identified with autism. Only New Jersey has a higher prevalence rate in the United States.

Having a child with autism can be expensive for parents, including more frequent doctor visits, special schools and specialists.

According to the CDC, children with autism have about $6,000 more in medical expenses compared to those who don’t.

Is the increase in prevalence a sign of increasingly hazardous environments promoting the potential of autism, or does this just mean education and awareness of autism is growing and diagnoses are more effective?

What the statistics show

URADD was started in the 1980s and participated in the very first study looking at autism prevalence in the country. Amanda Bakian, director at URADD, said at the time the study made sense because of the population density of Utah focused along the Wasatch Front.

“At that point, our population was smaller than it is now,” she said. “The idea of ascertaining the population was actually possible then.”

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PREVALENCE OF AUTISM SPECTRUM DISORDER Prevalence in Utah County vs. overall Overall URADD

Prevalence (Per 1,000 8-year-old children)

30 25

The following data was gathered through a study released in March 2016 by the Utah Registry of Autism and Developmental Disabilities (URADD) on the prevalence of autism spectrum disorder among 8-yearold children in 2012 in Davis, Salt Lake, Utah and Tooele Counties.

Source: Utah Registry of Autism and Developmental Disabilities (URADD)

20 15 10

35 30 Prevalence (Per 1,000 8-year-old children)

35

Utah County

5

The following data is based on the population of 8-year-old children with autism spectrum disorders in Davis, Salt Lake and Utah counties, and in 2010 and 2012 including Tooele County.

Source: Utah Registry of Autism and Developmental Disabilities (URADD)

19.88

20

15.8

15 10

13 10.2 6.5

5

0

0 Males

Females

Additionally, Utah has one of the most complete population databases in the country, making access to genealogical information rather simple.

But because of the varying population density now, new methods of tabulating data became necessary. Thanks to legislation issued in 2015, autism is now a reportable health condition, which means URADD can query databases to identify individuals with autism from past years.

According to the March 2016 study of 2012 prevalence rates, about 1 in 73 8-year-old children in Utah County have autism, a vast difference from the rates of the entire state.

About 1 in 48 boys and 1 in 156 girls who are age 8 in Utah County have autism.

Bakian said though these preliminary prevalence rates, especially in boys, are statistically significant from the overall state data, it may be a reflection of incomplete information.

“We might be missing a data source. We might be missing a health care provider in Utah County,” she said. “I don’t believe the prevalence is any lower in Utah County, I think we have incomplete data.”

Bakian and the researchers at URADD are looking into what data sources they may have missed to further complete the data.

Throughout the state of Utah, about 1 in 33 8-year-old boys and 1 in 108 8-year-old girls have autism.

The vast difference between boys’ and girls’ prevalence rates is typical, though startling. There are typically four times as many boys diagnosed with autism as there are girls.

Compare those numbers to 2002, the earliest accessible year of prevalence rates from URADD, 12

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Total prevalence in Davis, Salt Lake, Utah and Tooele counties

The Autism Puzzle in Utah County

Total

when about 1 in 160 8-year-old children were diagnosed with autism in Utah.

And in the study from 2010, autism prevalence rates nearly tripled, with about 1 in 63 8-year-old children diagnosed with autism.

It should be noted that statistical information on children younger than 8 was not yet released in the newest URADD study.

Difference in future diagnoses and statistics The definition of autism spectrum disorder is found in the Diagnostic and Statistical Manual of Mental Disorders (DSM). Since the first DSM was released in 1952, the DSM definition of autism has changed dramatically. In fact, the first two DSM classified autism in the same group as schizophrenia.

The first diagnosis criteria for autism came out in 1980 with DSM-III. Then, in 1994, DSM-IV came out and gave a much broader definition for autism than DSM-III. Bakian said DSM-5 was just issued in 2013 and has a slightly narrower definition of autism.

Because of that, prevalence rates from 2012 will likely be recalculated to reflect the DSM-IV definition and the DSM-5 definition.

Behind the numbers

Because of the wide range of unknown variables concerning the causes of autism, there are varying opinions on why autism prevalence in Utah is substantially higher than the national average.

“We don’t really know why it’s so high in Utah,” Bakian said.

2002

2006

2008

2010

2012

Michael King, program manager of the GIANT Steps program with Wasatch Mental Health, said he’s as baffled as anyone as to why prevalence rates are where they’re at in Utah.

“We don’t even know why autism exists in the first place,” King said.

Liz Banner, principal at Spectrum Academy in Pleasant Grove, said it’s not only puzzling why Utah’s rates are so high, but why they keep getting higher.

“I feel like for a while, people were saying [children with autism] were being misdiagnosed,” she said. “However, as things have evened out, we’re still having that increase.”

Banner said the high number of children within Utah and Utah County has also been considered in determining the state and county prevalence rates.

King’s theory is that awareness of autism in recent years has encouraged greater research and better diagnoses as compared to the past when autism prevalence rates appeared lower.

“We didn’t really know how to treat autism very well,” King said. “We didn’t know enough about it. A lot of people thought, ‘Oh, well they’re just mentally retarded or something and let’s put them in a group home.’

“So then they had the worst thing possible, which is not enough social interaction.”

Bakian said treatment options for autism 15 years ago were limited, and doctors and health care providers are, as a rule of thumb, less likely to diagnosis a condition that isn’t treatable.

“A treatment provider is hesitant to provide a diagnosis without a treatment,” she said. “But now, it behooves the family more to provide a diagnosis of autism.”

“Our prevalence is what it is because we have a high probability of diagnosing a child with autism.”

Amanda Bakian, director at URADD

There have been numerous studies conducted by the CDC and other organizations that clearly show autism has a genetic contributing factor. And new studies suggest inversion, such as that experienced in Utah during cold winter months, may contribute to autism development.

“The research is just not definitive at this point.

It may be an increase in environmental triggers,” said Jaime Christensen, director of schools at Spectrum Academy.

But a common consensus between numerous professionals is that Utah has exceptional resources for researching, diagnosing and treating autism, which results in more accurate and more frequent autism diagnoses.

“Our prevalence is what it is because we have a high probability of diagnosing a child with autism,” Bakian said. “We do think we’re doing a much better job of helping identify children within the state.”

Fortunately, with the years of data come greater potential for understanding correlation.

“We finally have longitudinal data,” Bakian said. “Every year we publish more we have more data to see what’s happening. That is essential for understanding prevalence.”

Treatment resources

Banner said the earlier a child is diagnosed with autism, the better. Spectrum’s class sizes better foster early treatment and development of social skills.

“I think early intervention is a big part of it, because we do have smaller class sizes and we can help them with their academic needs and their social needs,” she said. “When we give them all the accommodations they need, then they’re able to focus better on learning.”

King said as important as potentially finding a cure for autism is, the priority is helping those with autism who have the potential to function in society to do so.

“If they have a job and still have some relationships and get along fine in society, then

that’s OK,” he said. “Are they cured of the autism?

No, they’re still on the spectrum. But they’re a functioning member of society and that’s great.

That’s success in my mind.”

Autism treatment specialists in Utah are dedicated to their research. High prevalence rates are equivalent to high empathy.

“We’ve just seen an explosion of understanding with people in the state,” Bakian said. “What’s really important to the Department of Health is just that the information is conveyed, and that we’re understanding the causes.”

Helping children with developmental delays, learning disabilities, autism and assisting low income families!

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& successes Stresses

Living well in an autistic world

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story by Keri Lunt Stevens

s I walk up to the family’s red brick home, I notice a fairy garden on the doorstep. The neighborhood is nice, the street quiet but friendly.

Immediately after ringing the doorbell, I hear a loud, sing-songy voice ask, “Who’s that?” over and over until a woman answers the door.

Cordial but somewhat guarded after years of defending her daughter, Jeanne O’Connor lets me in. Across the room I see Ailee, but I hang back to let her make the first move.

I’m surprised as she easily makes her way over to me — a huge smile spread across her face — and says hi. She hands me a bright turquoise toy bird and we talk about it for a while before she finds her fuzzy, brown stuffed horse on the couch.

I small talk with Jeanne and her husband Mike; Ailee stays close by my side. After a while, I pull out my notebook, and she immediately asks “What’s that?”

I respond that it’s my notebook, which she repeats. I tell her it’s where I take notes, to which she responds “Take notes,” over and over — sometimes like she’s asking a question, other times like she’s stating a fact.

It’s how she communicates, her mom says. To engage, Ailee usually lists the things she likes and wants the person listening to repeat them back to her.

I notice this at dinner, as we’re talking about Ailee’s favorite food. On the table is shepherd’s pie, which Ailee picks at after several proddings from her mother. Breakfast foods are her favorite, Mike says. He starts naming a few, like eggs and toast, which Ailee readily repeats. She picks up on our game and adds in a few of her own, shouting “Hash browns!” and “Sausage!” as we all laugh and enjoy her enthusiasm.

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The Autism Puzzle in Utah County

Sammy Jo Hester, Daily Herald

Ailee O’Connor, 14, has her hair brushed by her mother Jeanne at their Saratoga Springs home on Wednesday, March 9, 2016. Ailee is low functioning on the autism spectrum and was only diagnosed with autism about five years ago.

At 14, Ailee is small for her age, standing about 4-foot-9 and weighing in at about 85 pounds. But she’s a good eater, and her parents’ worries of her someday needing a feeding tube are tabled for the time being. Unlike many children with autism, Ailee doesn’t have many food aversions. Instead, for her, food is fun.

“Ailee needs a lot of sensory input, so she will try a lot of new things,” Jeanne says. “She is particularly going to like it if it’s spicy. So the things you’d typically think ‘Oh, you aren’t going to want to feed her that,’ are the things she’s going to like.”

For example, Ailee eats jalapenos and onions

straight, loves spicy salsa (and most Mexican dishes in general) as well as Thai food. Right now, her favorite meals include spaghetti and hot dogs. She used to be big on chicken nuggets and macaroni and cheese, but has recently phased out of them.

For snacks, it’s all about the crunch: Goldfish, Cheez-Its, chips, crackers. Because eating is a sensory experience, Jeanne will sometimes smash and sprinkle chips in a meal Ailee wouldn’t eat otherwise.

“We’ve found we can get her to do something she may not normally want to do if we add something she likes,” Jeanne says, leading into a story of Ailee’s love of mustard.

Sammy Jo Hester, Daily Herald

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Ailee O’Connor, 14, looks out the window during dinnertime at her home in Saratoga Springs on Monday, March 7, 2016.

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Ailee playing in a sensory bucket full of beans as a toddler.

“When she was little, Ailee couldn’t do canned peaches because of the texture. But then in elementary school we introduced them with mustard and she loved them. Every day after school she had to have them, with mustard. If I can’t get her to eat something, I’ll grab the ketchup or mustard and she’ll eat it.”

But all isn’t always well in the eating department. Sometimes Ailee’s sensory needs are more powerful than her hunger, meaning eating isn’t an option.

“It’s not always about being hungry,” Jeanne says. “You cannot make her no matter how hungry she is, if she doesn’t want it, she won’t eat it.”

It’s in these situations that the worry starts to settle in, and Jeanne lets her feeding tube fears creep in.

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“When Ailee’s in the mode of not wanting to eat anything, she’ll just want crackers, which she already had as a school snack and after-school snack,” Jeanne says. “I struggle with that. Do I just give her crackers all of the time? Because that’s not healthy. Knowing what to do in those moments is hard.”

Receiving a diagnosis

Born in Utah, Ailee wasn’t diagnosed with autism until she was almost 9 years old and living in Arizona. But her parents suspected she was on the spectrum long before then.

“I knew pretty early on actually, but I was kind of afraid of acknowledging it,” Jeanne remembers. “She was my baby, so I thought maybe I was just spoiling her too much. I was kind of in denial.”

When she was young — about 6 months old — Ailee would repeatedly rub her eyelashes with her palm, a habit her parents recognized as sensory behavior. She was also developmentally delayed, and didn’t sit up, crawl or reach any of the milestones others her age were reaching.

After therapy, Ailee started walking at about age 2 1/2. It wasn’t that she wasn’t physically capable before then, but that the sensory issues related to walking had been too much. At about age 3 she started playing with words, but she still wasn’t able to communicate her basic needs.

During the next several years, her family moved from state to state, each having different requirements of what qualified or disqualified Ailee for receiving state services. And of course, each new state brought new doctors.

In Utah, when Ailee was still a toddler, Jeanne said doctors were hesitant to diagnose Ailee because she would look adults in the face, laugh and smile, things children with autism sometimes won’t do.

Other doctors thought Ailee might have Rett syndrome or some other genetic disorder.

So when the autism diagnosis finally came, Mike remembers, so did relief. Though they were grateful Ailee likely wouldn’t lose coordination, speech and use of her hands (effects of Rett syndrome), he and Jeanne still knew little of autism and found themselves wondering about Ailee’s future.

“I was the typical person who thought children with autism are the kids who don’t bond with their parents, and pound their heads on walls,” Jeanne remembers. “It scared me, it scared me a lot.”

Life on the spectrum

The thing about a spectrum disorder is that there is a wide degree of variation in the way it affects people.

Ailee, for instance, has no problem looking adults in the eye, smiling or laughing. Interacting with her peers, on the other hand, is a different story.

She’s not potty-trained, but Ailee can communicate that she’s hungry or thirsty. She loves school, her teachers and going for rides on the bus.

Like many with autism, she also loves her devices.

“Ailee’s very low functioning but she can cruise through technology and get where she wants to be,” Jeanne says. “She can’t read or identify any numbers 16

The Autism Puzzle in Utah County

Sammy Jo Hester photos, Daily Herald

Jeanne O’Connor reads a book to her 14-year-old daughter Ailee after dinnertime in their Saratoga Springs home on Monday, March 7, 2016. Ailee is low functioning on the autism spectrum and was only diagnosed with autism about five years ago.

Ailee O’Connor, 14, holds her toy bird before bedtime at her home in Saratoga Springs on Wednesday, March 9, 2016. She often uses specific toys as coping mechanisms to transition between activities without causing an overload of stress.

or letters, but she can get herself around on YouTube.”

On any given afternoon, you’ll find Ailee in her room watching a rock concert on her tablet with a movie showing on her TV in the background.

She loves the electric guitar — one of her favorite musicians is Yngwie Malmsteen — and piano rock bands, including Journey and Queen. She also likes to filter through video clips of animal shows like “Balto” or “Spirit.”

“She usually spends a lot of time in her room doing her own thing,” Jeanne says. “We’ve learned to let her do what she wants to do when she gets home to wind down and decompress after school. We’ve found that by letting her do whatever she wants, she does better and then she’s more renewed to do better at school.”

If she’s feeling more interactive, Ailee loves to snuggle with her mom — whom she adores — and read books.

“A lot of people don’t understand that these kids

don’t like to be touched,” Jeanne says. “They don’t want you to initiate the interaction. With Ailee, if she initiates it, she can have almost a normal interaction of talking and touching because she’s ready for it. But if someone goes up to her and initiates it, it’s total overload and she’ll yell and get upset.”

This tends to be the problem when well-meaning people try to interact with Ailee and go about it the wrong way.

“I don’t think they realize how a little condescending they can be,” Jeanne says. “They’ll pat her on the head … and it can send her over the edge.”

The sensory world of autism

When Ailee experiences a sensory overload, she’ll mimic what’s being said around her, a behavior known as echolalia. When she needs more sensory input, she’ll yell or stim — usually flapping her hands in the air with her elbow bent in front of her. When she experiences an intense emotion, good or bad, she’ll often bite the back of her hand; the calloused knuckles of her right hand act as proof of the daily roller coaster she is on.

“I think most people don’t get to see the real side of an autistic child because when other people are around, their routine is messed up and they aren’t on their normal behavior,” Jeanne says. “So many people don’t get to see those moments of bonding. Even my extended family doesn’t get to see much of that.”

As she gets older, Ailee has gotten better at being touched, and will sometimes walk up to people and give them a hug. According to her dad, sometimes Ailee will treat a stranger on the street like her best friend. The problem is, if she doesn’t want to be touched, she isn’t able to tell you no.

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Her inability to effectively express herself, or understand when someone is mistreating her, is one of her father’s biggest fears.

“Ailee is the kind of child who would be taken advantage of or abused,” Mike says, as the conversation takes a sobering twist. “And that’s my nightmare, that at some point she’ll be abused. And the thing with Ailee is that she wouldn’t be able to tell us, and she wouldn’t know to tell us. She just doesn’t get that. As her dad, that’s one of my nightmares.”

Facing challenges

Because Ailee has only a few trusted caregivers, Mike and Jeanne rarely do anything to break their regular routine. They try to have a weekly date night, but as their daughters Meagan, 18, and Erin, 16, grow older, it’s harder and harder to convince them to stay home to babysit every Friday night.

“It’d be nice to have a vetted, trusted caregiver who works with autistic kids who could come in even for just an evening so we could go out,” Mike says. “But it’s hard to trust people. I’m sure if we looked there are probably nanny services that serve those with special needs, but I haven’t looked hard for them.

“I’m a little concerned, to be honest, because we all hear horror stories. I’d almost want to put up hidden cameras.”

The O’Connors aren’t opposed to taking Ailee out in public with them, and on her good days they will.

But then they’re faced with another challenge.

“Ailee doesn’t look special needs, so people expect her to not to be,” Mike says.

While at grocery stores or restaurants, the family has experienced its share of rude comments and wayward glances, including strangers straight out asking why the parents don’t “discipline their little girl.”

“When Ailee walks into public, people expect normal and then when they don’t get it, it throws them off,” Jeanne says. “I don’t think that people don’t want to be accommodating, it’s just that they look for visual indicators.”

On the other hand, Ailee often gets special treatment she doesn’t need — usually from wellmeaning people at church who let her get away with things they shouldn’t.

“She’s fun and cute and she totally knows it,” Jeanne says with a laugh. “Just like any other kid, she’s going to manipulate, and she’s going to play you and try to get what she wants. It’s funny to see that there’s this underlying normal going on.”

Planning for the future

Nestled in the hills of Saratoga Springs, the O’Connors have a routine. Mike works in the online fraud prevention industry. Jeanne is a stay-at-home mom. Their son Sean, 20, is in the Army. Meagan is an assistant manager at a local fast food joint. Erin is a junior at Westlake High. Ailee attends an enclosed special needs classroom at Vista Heights Junior High.

Everyone does their part to contribute to the fluidity of the family, and for now, it works. But Jeanne knows in the next several years, things are going to change.

“Honestly I don’t know what is going to happen 18

The Autism Puzzle in Utah County

Sammy Jo Hester, DAILY HERALD

Ailee O’Connor, 14, eats dinner with her family at their Saratoga Springs home on Monday, March 7, 2016.

Ailee is low functioning on the autism spectrum and was only diagnosed with autism about five years ago.

“When Ailee walks into public, people expect normal and then when they don’t get it, it throws them off. ... I don’t think that people don’t want to be accommodating, it’s just that they look for visual indicators.”

Jeanne O’Connor, Ailee’s mother

when I get to the point when I can’t take care of her anymore … and it scares me to death,” Jeanne says. “I think about it all of the time. I feel like I have to stay in the best shape that I can so I can take care of her for as long as I can, because it’s going to get harder as she gets bigger and as I get older.”

Weighing heavily on her mind aren’t just topics of long-term care, but more immediate concerns like the fact that Ailee isn’t potty trained and is approaching puberty.

“We have to think about difficult things, like wondering if we can prevent her from having a period,” Jeanne says. “For a child who doesn’t understand, that could be traumatic.”

The family isn’t receiving state services — such as respite care, a Medicaid card or physical, speech or occupational therapy — because when they lived here years ago, Ailee didn’t qualify. According to Jeanne, in 2005, the state of Utah would not recognize Ailee as disabled without a diagnosis.

“Regardless of her symptoms, because she didn’t have a diagnosis, Ailee was denied services,” Jeanne says. “I don’t know if she would qualify now because to be honest I haven’t had the guts to call them and try to go through the process again.”

Though most days Jeanne will tell you caring for Ailee isn’t an added burden, on some days she feels the stress.

“I love her to death, but the truth is I am doing more for her than you would do for any other 14-year-old,” Jeanne says. “I’ve been changing diapers for almost 21 years. And it’s not going to stop in the foreseeable future.”

Enjoying the present

After dinner, Ailee sits on the couch and listens to her mom read “Old Black Witch!” a classic from Jeanne’s childhood. Mike and I sit at the kitchen table.

Duke, the family’s friendly pit bull, goes back and forth between us.

Ailee loves Duke, and he loves her. According to Mike, the pair have a special relationship. In the mornings and after school, Ailee will sit on the ground and Duke will lick and lick her.

“He knows that there is something special about Ailee, so he treats her very carefully,” Mike says, running his fingers through Duke’s gray coat.

The girls join us at the table; Ailee has agreed to finish her dinner in order to have a slice of her daysold birthday cake.

“To be honest, I used to be terrified of having my own special needs child,” Jeanne says. “When you’re looking from the outside in, you are thinking it’s so hard. And I’m not saying it isn’t ... but you don’t think of it that way as a parent. It’s your kid and you just do what your kid needs.”

What it means to be a parent of a child with autism Story by Stacy Johnson

W

hile scrolling through my Facebook feed a few weeks ago, I saw a post that said, “Some days I think I can’t be a good parent to my child with autism.

The other days I know I can’t.”

The post made me laugh because, as a parent of a child with autism, I could relate. Many days I’ve had my own doubts about handling the problems that come with having a child with special needs.

My son was diagnosed with an autism spectrum disorder at 3 years old. My second son was just 8 months old at the time and I felt a wide variety of emotions — emotions I’m sure most parents feel when they are told their child has special needs.

I felt relieved to understand a little more clearly how my son felt and thought.

I felt scared, not knowing what my son would have to struggle through for his entire life.

I felt inadequate at my own abilities to parent a child with special needs.

I felt unsure of where to go or what to do to help him.

Above all, I felt an incredible amount of love for my son, who was still the same happy, loving and kind kid I’d always known.

My husband and I have some background in working with those with disabilities — we had been involved in the LDS Church’s special needs mutual program, my husband had worked with those with disabilities for nearly a decade, and we had often visited a local home for those with disabilities — but nothing fully prepares you for being a parent of a child with autism.

There are so many aspects to autism and, like all kids, no two kids on the spectrum are exactly the same. I’ve heard it said that if you know one kid with autism, you know one kid with autism.

Over the past few years, I’ve seen my son struggle with language delays, sensory disorders, anxiety and social disorders.

I saw other kids his age learn to speak and have conversations with their parents and peers, while my son stopped progressing in his speech and would only repeat the same few phrases over and over.

I’ve seen my son struggle with basic motor skills like holding a pencil or pedaling a tricycle.

I’ve seen my son struggle with eating foods with which he was unfamiliar as far as texture or taste.

I’ve seen my son struggle with even simple routine changes, and any unexpected changes to plans.

Stacy Johnson poses with her son, who was diagnosed with autism spectrum disorder in October 2014.

I’ve seen my son have meltdowns and complete shutdowns simply because somebody talked to him and expected him to say something back.

I’ve seen my family members struggle to get to know him when he won’t interact at all with them.

But with all of those struggles, I’ve had my share of joys that have come, not in spite of, but because of my son’s autism. Every moment he makes progress means so much more because of the work it took to get there.

There was the moment when, after a year and a half of weekly speech therapy, I had my first full conversation with him.

There was the day he first started going to his early intervention preschool program and loved it.

There was the first time he came home from school and was able to tell me something he did while there.

There was the night he said his first prayer without any help.

There was the first time, just last month, that he was able to go a full afternoon without a potty accident.

There was the day that he was able to say hi to a friend without being prompted.

There were the times that he was able to tell his grandparents, aunts, uncles and cousins that he loved them.

And there is the everyday event of him playing and talking with his best friend — his little brother.

Each of these events, though they may seem small, were monumental for us, mainly because they took a lot of help and work to get there.

His progress doesn’t come just from his hard work and our work as parents.

Our ability to involve him in early intervention programs, from preschools to different kinds of therapy, has made an immeasurable difference.

I was amazed when I started looking into the programs that are available, just how many different options there are. I learned quickly just how much potential kids with autism have, especially when they get the help of speech therapists, occupational therapists, school teachers, pediatricians and many others.

I’ve also learned that I’m not alone. Being a parent of a child with autism means that you are part of a community — a community of other parents, family members and friends of those with autism. You have an instant bond with other parents, who can be a great resource for you as you go through struggles together and look to each other for support.

So, what can we do as community members to help?

There are always events like autism runs and fundraisers that help in autism research, but the biggest contribution, in my opinion, is to offer true understanding and support to individuals with autism and families of those with autism.

One day, while sitting in church, my son was having a particularly bad day and was obviously disrupting others around us.

The woman in front of us quietly turned around and handed him a package of fruit snacks, which grabbed his attention enough to calm him down.

She never said another word, but knew that at that moment, my husband and I needed the extra help.

Offering understanding and support is more than just not judging. It means taking an active role in learning more about autism and the struggles that those with autism go through. It means stepping up and offering help when needed.

If you aren’t sure how to help, ask the person or, if it’s a child, ask his or her parents. If you want to know how your kids can better befriend those with autism, ask their parents. If you want to help them, get to know them.

Instead of walking past the parent struggling with their autistic child in a store, smile and give them a kind word of support. Help babysit other kids while a parent takes their child to therapy.

When an adult with autism says hi, stop and have a conversation.

Those simple acts of kindness are the moments when I know, with the help of those around me, that I actually can be a good parent to my child with autism.

Daily Herald • heraldextra.com

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Spenser Heaps, Daily Herald

Ronin Forshay, 4, runs across rubber pads as Behavior Technician Melissa Jensen, left, works with McKenna Morgan, 2, on Monday, March 14, 2016 at the Kids on the Move Autism Center in Orem.

Education A and interventions in Utah County

Public education, nonprofits struggle to address individualized curriculum with limited funding

20

The Autism Puzzle in Utah County

story by Karissa Neely

generation ago, focused education for those diagnosed with autism was just a small part of special education classes.

Now, all school districts have autism education specialists, and there are entire schools and day treatment centers, like Spectrum Academy in Pleasant Grove, or the Utah Autism Academy in Orem, dedicated to students with autism.

Still, most of those involved in the field say more needs to be done.

Regardless of the setting, schools throughout the valley work to keep up with and implement the latest in autism intervention techniques. Currently, the most effective and research-backed therapy is Applied Behavior Analysis (ABA).

According to the Center for Autism, ABA “is the process of systematically applying interventions based upon the principles of learning theory to improve socially significant behaviors to a meaningful degree, and to demonstrate that the interventions employed are responsible for the improvement in behavior.�

Spenser Heaps, Daily herald

Behavior Technician Melissa Jensen works with McKenna Morgan, 2, on Monday, March 14, 2016 at the Kids on the Move Autism Center in Orem.

In layman’s terms, that means interventions are extremely specific, direct, have a measurable result and build skill upon skill, according to Allison Iwata, clinical supervisor over the autism center at Kids on the Move in Orem.

“It’s a data-driven science, and we write clear and specific goals for our children because we want them to be observable and measurable, and so we can see how close the child is to them, or how far they’ve gone above,” Iwata said.

For students with autism, this is effective because it takes the student wherever he or she is, and then adapts the learning to help him or her attain the next benchmark.

But no two autistic students are alike, and because every student is on different parts of an enormously broad spectrum, each person is very unique in his or her needs and skills. Thus interventions and curriculum for each student must be highly individualized, and usually done in a one-on-one setting — something that is arduous to implement in the current public education sphere. Local schools, with limited funding and resources, are still trying, though.

Michael Faires, a 16-year-old from Pleasant Grove, is just one of the thousands with autism in Utah County. But his journey through the education system in Utah highlights the highs and lows of the process.

Michael is the oldest of four children in David and 22

The Autism Puzzle in Utah County

Interventions and curriculum for each student must be highly individualized, and usually done in a one-on-one setting — something that is arduous to implement in the current public education sphere.

Jenny Faires’ family. His parents identify him as low functioning — he is mostly non-verbal, not pottytrained, can’t feed himself, is prone to running and escaping, and is hyposensitive. He has a hard time being cognizant of where his body is in the space around him, and thus bumps into walls and people often.

Jenny is somewhat sure he knows his letters, and understands more than he’s able to display, but it’s not clear if he can read. He’s also suffered from epilepsy since he was a baby.

But he loves roller coasters, syncing up two

electronic devices and giggling at “Teletubbies” and “Sesame Street,” hearing trains and marching bands, and often points out horses to his parents. He also loves dancing with the girls at his LDS Special Needs Mutual activities.

Early intervention

When it comes to autism, most experts agree that early intervention is key. Delaine Qawasmeh, special education facilitator over Sunrise Preschool in the Provo City School District, is one of them.

“It’s 100 percent, no, 250 percent important that they get early intervention,” Qawasmeh said.

“This is the time their brains are developing, and major differences can be made in their lives. The amount of change that can be made at this age is tremendous, and research bears that out.”

Sunrise Preschool provides services for children at all points on the autism spectrum. And when Qawasmeh talks of the 16 years she’s worked with these students, one can hear the passion in her voice.

“We figure out where a child is functioning, and our goal is to then move to the next level of development,” she said. “We don’t put a ceiling on what they can achieve, and we don’t let mobility or communication issues hold them back. We believe success breeds success.

“You have to see these kids as whole individuals and see where there is any area they can make a gain in, you are doing that.”

Dominic Valente, Daily Herald

Rachel Mardesich works with Michael Faires, who has autism, on life skills and cognitive exercises on Wednesday, March 9, 2016 at Utah Autism Academy, formerly the Clear Horizons Academy, in Orem.

Alternative Communication (AAC) device to his repertoire both at the school and at home, and have seen improvements in his ability to communicate.

Though he currently only accesses less than 20 pictured words on the application — words like “help,” “hungry,” or “stop” — it’s helped him reach out to others.

“That empowers him and helps him have more control in his environment and has decreased his behaviors that were inhibiting his ability to learn,” said Holli Child, lead behavior specialist over Michael’s education at UAA. This is the same help Jenny felt was lacking in Michael’s other education experiences.

Qawasmeh has also seen similar stories. Many of her students go on to success at the elementary and secondary levels, but she’s also had her heart broken many times. Even her higher functioning students often struggle as they move into elementary, junior high and high school.

“Then they’re working with a lot of people who don’t have autism training, and that can affect how the student feels about themselves,” she said. “Several don’t have IEPs or attend special education, and these kids and parents don’t know where to go for help.”

Early intervention does not get rid of the need for support along every part of an autistic student’s path, according to Michele Thompson, Nebo School District’s specialist in autism and behavior.

And the daunting part of the whole equation is how much these supports differ student to student.

“It’s a very challenging task. That’s why autism has a puzzle piece icon. Their brains are a puzzle,” Thompson said. “Many of these students have ‘splinter skills’ — their brains are connected in different ways. They are strong in some ways that neurotypical people are weak, and weak where the majority of neurotypical individuals are strong.

“So we’re juggling varying developmental skills.

So we focus on what we can see in front of us.”

Continuing interventions

Spenser Heaps, Daily Herald

Henry Chipman, 5, works with Behavior Technician Rebecca Cowley on Monday, March 14, 2016 at the Kids on the Move Autism Center in Orem.

Because the Provo program is so successful, and the local need is so great, Qawasmeh is working with the district to open another preschool classroom to lower the student-teacher ratio and better serve more students.

At the age of 10 months, Michael was involved in the Provo Early Intervention Program, even as his parents struggled to get doctors to arrive at a correct diagnosis. At age 3, he was officially diagnosed, and attended Provo’s special needs preschool at Oakridge School, and then transitioned to the GIANT Steps program run by Wasatch Mental Health, until age 5. In those early years, Jenny felt he was getting important help that he desperately needed.

But then he aged out of those programs and

was moved to another Utah special needs, selfcontained school. The school was in its early years of learning how to educate those with autism, and Jenny felt like Michael floundered through those years because of the lack of one-on-one help.

She moved him to Utah Autism Academy (UAA) in fourth grade and has been happy with the support and progress he’s made since. UAA is a day treatment center specializing in autism education and providing measurable one-on-one consistent interventions for Michael with highly trained specialists.

Because communication is such a big stumbling block for Michael, the specialists and therapists at UAA work very heavily on those skills with him.

Recently, they’ve added an Augmentative and

Every Utah County school district is working to address this same problem as kids age through the system, but it is more challenging at the elementary and secondary levels.

In the Nebo School District, as with all public schools, students with autism participate in special education classes that don’t discriminate between disability type. According to Thompson, they have programs that are heavily structured and intense, where one-on-one interventions occur, and often these programs pull in many students with autism.

But they also have varying degrees of support, because they want “to teach children in the least restrictive environment.”

Alpine School District is working to address students’ needs as close to home as possible in school-based programs. Students can participate in pull-out mediations, and occupational and speech therapy, but also work in intense self-contained classrooms and schools to address the “full range of needs that may require a variety of interventions,” according to Ryan Burke, director of special education for the district.

Daily Herald • heraldextra.com

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Many parents are happy with the services their children receive as they age through the public schools, but Jenny feels local programs are “better than most but still lacking, especially for more severe students.”

“Special education teachers outside of autism units need more autism-specific training and tools.

The pay for aides needs to be increased to attract and keep quality aides who stimulate the children to learn, not just keep them safe,” Jenny said.

“Autism education also needs to improve in the secondary education system. There are no autism units, only life skills classes where teachers deal with a mix of special needs students and learning styles.”

Michael needs “2 pounds of help” Jenny said, but in general special education programs, she feels he got “one or two ounces” of help, with a long eightto 12-week wait time in between. For her that’s not good enough, and that is what drove her to UAA. Before UAA, Michael wouldn’t ask anyone else but Jenny for help with any task. But once he started there, and learned that others wanted to help him, wanted to learn how to communicate with him and figure out his needs, he’s become much more trusting of others.

Jenny feels education at the secondary level needs to be very proactive, similar to what Michael experiences at UAA. Instead of just keeping him safe, and in order to be truly effective, autism educators need to be “progressive thinkers and not reactive thinkers,” always thinking ahead, aware of what situations or environmental factors might cause a problem for the child.

“You can tell public autism education in Utah County has issues by looking at how many kids are on waitlist for services at places like Utah Autism Academy, how many students are being serviced by the autism charter school, Spectrum Academy, and others being serviced by other agencies,” she said.

Jenny has had similar problems with in-home help. She has state funding for an aide to come in each day to work with Michael, but those funds only equate to about an $11-an-hour wage. At that level, she ends up with assistants familiar with special needs in general, but not those who have solid experience and training with autistic children.

Between David and Jenny, they work five jobs just to support their family while paying for Michael’s doctors and schooling. Even with that, they are helped with the monthly costs at UAA by a grant, an anonymous private donor and Medicaid payments. If any one of those sources drops out, they will have to drop out of the school, and Jenny dreads the idea.

And truthfully, for both public schools and specialty schools, it continues to come down to money. All local programs need more funding to expand their current services and to provide and keep well-trained teachers and aides.

“It’s awesome when you have well-researched programs,” Thompson said. “But it’s still daunting, and still a lot of resources are needed. And it’s a lot of funding we have to beg for every year.”

The lack of money only seems to worsen as those with autism get older. Scenic View Academy near 24

The Autism Puzzle in Utah County

Dominic Valente, Daily Herald

Rachel Mardesich plays and works with Michael Faires, who has autism, on life skills and cognitive exercises on Wednesday, March 9, 2016 at the Utah Autism Academy, formerly the Clear Horizons Academy, in Orem.

Provo Canyon serves adults, usually 21 or older, with an autism spectrum disorder or other learning disability.

It is one of the few schools locally, even nationally, that addresses the “22 Cliff,” as Jared Stewart, chair of Scenic View’s education department, calls it, referring to the dearth of services available for those 22 and older. And Scenic View is only able to do so because it was founded and endowed with funding from Ray and Tye Noorda.

“The Noordas gave us an endowment to help those who can’t pay. Essentially, by the time these students hit here, their parents are broke,” Stewart said. “In Utah there is very little funding for special education, and we have very few islands of excellence. It’s hard to get them help and to get that help to follow them.”

Again, because the spectrum is so broad, Stewart and his team customize instruction specifically for each adult student. Every individualized program includes social skills support, academics, life skills and therapy for the emotional baggage students with autism carry with them into adulthood.

They’ve had students who, because of their processing struggles, failed all of high school and need to catch up on academics, while other students come to Scenic View after earning multiple master’s degrees, but are chronically under-employed because of their impaired social and communication skills.

“Autism is a developmental delay,” Stewart said.

“One of the things I’ve found is the rule of twothirds. Those on the spectrum are about two-thirds of their actual age.

“So many of them hit their stride in their early 30s, wanting to get their driver’s license, and considering dating and college.”

The old proverb opines that “it takes a village to

raise a child,” and nowhere is that more true than with families affected by autism. Autism doesn’t just affect the child struggling with it, but has a farreaching effect on the family unit as a whole.

In the Faires family, Jenny and David’s other “neurotypical” kids have sacrificed a lot for the sake of their brother — even if they don’t realize how different their life has been.

“They’ve missed out on travel because Michael couldn’t tolerate hotels. They’ve missed out on participating in school and community events and swimming in the summer, because I couldn’t manage autism and a toddler on my own while my husband was working. They’ve missed out on camping because it’s not been feasible to take Michael without the real worry that he would get lost,” Jenny said.

Stewart echoes this, and said that not only is there a need for more funding and services for students with autism, but society as a whole needs to be more accepting of those struggling with autism, less judgmental of their families, and start to see the benefits these differently abled children bring to the community.

“We want our students to be proud of who they are — to acknowledge their weaknesses and challenges, but also focus on their strengths,” Stewart said. “There’s always hope. There’s always that next hope to get to that next quality-of-life benchmark, whether it’s potty training or a college diploma. There’s always hope.”

That’s the main takeaway for all levels of autism education programming in Utah County. There is still so much more to learn, and so much more that needs to be done, but for each and every child dealing with autism, there is hope.

If funds can continually be procured for the many programs in the valley, there are numerous milestones those with autism can achieve.

The ‘Services Cliff’ Underrepresented groups in autism struggle to access resources and health care

I DOMINIC VALENTE, DAILY HERALD

Minerva Nava touches her son Fernando’s cheek while his father Rogelio smiles during a ride on the FrontRunner for a trip to Salt Lake City on Saturday, March 12, 2016. The Nava family struggles with language barriers as well as full work schedules to get the care that Fernando needs for his autism.

STORY BY KATIE ENGLAND

solation. It’s a familiar feeling for those with autism spectrum disorder, as well as their parents.

However, when barriers such as cultural differences or lack of resources exist, that feeling of separation can become even more severe for all involved.

Autism resources could stand for some expansion in all areas, but certain groups face particular difficulty in connecting with relevant resources and finding a supportive community.

Strides are being made to fill these gaps in services through all stages of life, and for all kinds of people. But there’s still much to be done.

More resources are available for early intervention for young children with autism than for perhaps any other age group. But oftentimes, that support system dissolves when children hit what is known as the “services cliff ” after high school.

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The 2015 National Autism Indicators Report shows that every type of service — such as mental health support, diagnostic services and physical therapy — decrease for those with ASD after graduating high school.

Those with autism are more likely to drop out of college than their peers, according to a 2014 article published in the Harvard Review of Psychiatry.

Dropping out of college lessens their chances of obtaining good jobs and independence in the future.

Now, a larger number of those with ASD are choosing to attend college than ever before, and universities across the nation — including those in Utah — are making attempts to address this critical hole in services.

Passages

For the past two years, students and community members have been attending a series of classes called Passages at Utah Valley University. The program attempts to help those with ASD transition more smoothly into a college and adult setting.

“When someone’s in high school, they have access to all kinds of laws that give them support,” said Laurie Bowen, community services director for the Utah Valley University Center for Autism. “So, they have an individualized education plan. Their parents can interact directly with the teachers to make sure they’re successful in classes.”

Once they hit this critical transition point, these young adults are suddenly forced to become more independent. They are now faced with being responsible for everyday tasks such as turning in papers on time and interacting with strangers in a new environment.

Spencer Palmer, 23, has been attending Passages classes for the past two semesters while taking general education courses at UVU. He originally only began attending because his mom wanted him to. But after spending time in the program, he’s beginning to understand why she wanted him in Passages in the first place. He’s gained independence and feels more secure in the adult world. “(Passages) helped me to be more structured in homework and start looking into myself deeper and start being more socially open to other people,” Palmer said.

The higher-than-average dropout rate of college students with ASD is, at least in part, because of autism’s common co-appearance with anxiety or depression, making supportive services at this transitional stage of life just that much more important.

About 20 students shuffled into a UVU classroom on a recent Wednesday night for an interactive social skills class, while an introduction to life skills class met across the hall.

Some of the students in the class are attending UVU, while others are attending other colleges or working.

Teacher Ryan Miller focused that night on setting social goals, which the students will be accountable to have accomplished in the weeks to come. The goal could be as simple as starting a 26

The Autism Puzzle in Utah County

Sammy Jo Hester photos, daily herald

Rick Stacey laughs during a class taught by Ryan Miller on Wednesday, March 9, 2016 at Utah Valley University.

The classes’ intentions are to help teach young adults with autism how to transition into college.

Cole Hinton raises his hand during a class taught by Ryan Miller on Wednesday, March 9, 2016 at Utah Valley University.

conversation with a classmate, or as terrifying as asking someone out on a date.

A portion of the class was taught by 18-year-old Bailey Reitz, who has been participating in Passages for two years. Reitz’s autism is coupled with Social Anxiety Disorder, which the classes have helped her overcome to the point that she was able to present a lesson on goal-setting in front of a sizable group.

“This program has been a big step in me getting over my Social Anxiety Disorder, because it gave me people who came in a lot of ways from the same steps that I did,” Reitz said. “With having

the autism, the same struggles that I had, and it provided a safe haven where I could socialize and not feel that I would be judged or hurt.”

Reitz has completed courses at Mountainland Applied Technology College, where she studied to be a nursing assistant. She is currently waiting on the results of state tests and looking forward to holding down a regular job.

As part of the Passages program, different classes are held three times a week and include social Saturday activities that attract both local participants and some from within a several-hour radius.

Dominic Valente, Daily Herald

Fernando Nava plays the violin, an instrument that soothes him, on Saturday, March 12, 2016 in West Jordan. The Nava family struggles with language barriers as well as full work schedules to get the care Fernando needs for his autism.

“There are those who are willing to commute because there’s nothing else like this for them,” said Bowen, who co-teaches one of the classes.

Hispanics

For others, the challenge of finding a supportive community and resources to help with autism can be accentuated even more by cultural and language barriers.

As of 2014, 11.2 percent of Utah County’s population identified as Hispanic or Latino, according to the U.S. Census Bureau. Approximately one-third of Hispanics in the U.S. do not speak English proficiently, according to a 2015 Pew Research Poll.

Hispanics are being diagnosed with autism at growing rates. Even so, Utah County is without any significant autism resources for Spanish-speaking people.

There are a few websites with resources in Spanish, such as autismspeaks.org and autismcouncilofutah.org.

There are some scattered pediatricians and nonprofit workers who speak Spanish. But a cohesive, extensive network of autism resources for Spanish speakers in Utah is virtually nonexistent.

Fernando Nava, 11, was officially diagnosed with autism at the age of 6. He is limited in his speech capabilities, but is currently attending school and outpatient therapy to support further development.

Sammy Jo Hester, daily herald

Madison Sykes and Seth Pinegar share a moment during a class taught by Ryan Miller on Wednesday, March 9, 2016 at Utah Valley University.

Daily Herald • heraldextra.com

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Though shy at first, Fernando warms up to those who show interest in a few of his favorite topics. He loves Pixar movies, classical music and his collection of national flags, which he can match to the appropriate country better than his parents can.

His parents, Rogelio Nava and Minerva Baylon, moved to the Salt Lake City area in 2011 for the specific purpose of finding more resources for their only son. Fernando was diagnosed with Pervasive Development Disorder, Not Otherwise Specified (PDD-NOS) while the family lived in Mexico. They moved to El Paso, Texas, and finally West Jordan, Utah, in their search for more ways to help their son.

But the couple had never had to speak English in either Mexico or El Paso. One pediatrician the couple visited in Utah spoke Spanish, but otherwise, they were left struggling to decipher complicated medical terms and a labyrinth of English-speaking specialists on their own.

“Sometimes we wanted to communicate worries or challenges we had, and we were not so sure about the terms,” said Baylon through an interpreter. “Especially about the medical terms and some information. It was hard for us to express our needs.”

A teacher’s assistant at Fernando’s school told them about Proyecto Autismo, (the Utah Autism Project), a nonprofit informational organization for Spanish-speaking parents of children with autism.

Lourdes Rangel, who founded the Utah Autism Project, is a mother of three sons with autism, and no stranger to the difficulties of wading through complicated medical diagnoses in a second language.

Doctors originally told Rangel that her eldest son, Joshua, now 12, was slower in developing because he was confused by hearing both English and Spanish at home. That led to a late ASD diagnosis for Joshua at the age of 4.

“That was a strain,” Rangel said. “Because I had no one to share my experience with, no one to identify with and no one to guide me through the process.”

Her experience inspired her to help other families like her own by designing a Spanish autism workshop and organizing support groups for Spanish speakers. She and other parents and volunteers have helped hundreds of Spanishspeaking parents through a Facebook page, workshops and support groups.

After connecting with Rangel’s group, Nava and Baylon educated themselves as much as they could about autism, so that they could help other people.

And for the past six months, they have been leading some of the parent support groups.

Economic and cultural barriers

But even with the common ground of speaking Spanish, some parents have difficulty attending such groups. Most of the parents Rangel work with have multiple jobs, making it difficult for those families to attend events designed for parents with a 9-to-5 schedule. “(Some Latino parents) don’t have somebody to watch their kids for them, or money to pay for their care,” Rangel said. “So for parents to be able 28

The Autism Puzzle in Utah County

Dominic Valente, Daily Herald

Fernando Nava sets up flags he uses for play and for learning on Saturday, March 12, 2016.

to come to a workshop, they have to ask for a day off. It’s very hard for them to get involved.”

In addition, many autism resources and therapies are extremely expensive. Nava and Baylon wanted to send Fernando, who loves music, to music therapy. But when they were told the cost, they knew they couldn’t afford it.

Often, the best way to combat some of these cultural differences is to have as much one-on-one interaction as possible. Rangel said volunteers have addressed these problems by visiting peoples’ homes, and taking time to explain resources and answer questions.

“It’s more like a personal relationship with the parents,” Rangel said. “More like friends. We became our own support system in a way.”

But as a nonprofit organization, finding the manpower to accomplish such a task can be daunting. Most of the volunteers for the organization are parents of kids with ASD themselves, with full-time jobs and a family to take care of.

Diagnoses

In a study published by the Centers for Disease Control in 2014, it was found that white children are 50 percent more likely to be diagnosed with ASD than Hispanic children are.

The study said there is no data to support causation for these differences; Rangel said both the culture and language barriers probably have something to do with it.

“Culture plays a huge role,” Rangel said. “Because we try to hide, to deny (autism).”

That, along with lack of culturally appropriate resources, may combine to be the most significant factors as to why Hispanics have lower numbers of

autism diagnoses.

Nava and Baylon say they are very happy to have moved somewhere that has more opportunities to help their son. They are becoming more fluent in English. Baylon said she hopes to take another English class soon through a community college.

But there are a few things they said could be done to help other couples like them.

The obvious answer is more Spanish resources — brochures, informational material, websites — but those resources are only helpful when people know where to find them.

“Something that would be nice to see from the state would be an immersion program,” Baylon said. “Somewhere parents can go and learn how the system works. How to access resources.”

She said she thinks a Spanish awareness campaign would be beneficial for both families and the agencies because it would help make families more independent.

“They (the families) would have a better quality of life overall,” Baylon said.

UVU is in the process of testing a couple of pilot programs to explore other avenues for helping those with ASD in both college and post-college aspects of life.

The university has partnered with Easter Seals Disability Service to incorporate a volunteer program that allows individuals with ASD to volunteer for positions that could possibly lead to jobs later on.

Another pilot program currently being tested provides more one-on-one help for students in the classroom.

“So we’re being an advocate for them with their teacher when it’s needed to see if that makes a difference for them educationally,” Bowen said.

Emotional connection Pleasant Grove family helps 19-year-old with autism navigate a silent world

T

SPENSER HEAPS, DAILY HERALD

Brandon Everett walks around campus on Friday, March 11, 2016 at the Utah School for the Deaf in Ogden. Everett received a cochlear implant at age 2, which improves hearing but requires verbal training that is complicated by his autism.

STORY BY KARISSA NEELY

he Everett family of Pleasant Grove has 12 adopted children, but one son, Brandon, has lived in a very isolated world much of his life.

“I’d love to find the key to unlock him,” said his father, Vance Everett.

Brandon has the one-two punch of suffering with autism and being deaf. Those two combined conditions have inhibited his ability to communicate and reach out to the world for much of his 19 years of life. He had a cochlear implant at age 2, which usually requires consistent verbal training and interaction, but having autism made that very difficult.

“Deafness will set a child apart from society. Autism separates a child even more,” said his mother, Laurie Everett.

Brandon came to the Everett family at age 9, after being in a situation where his father and step-mother didn’t understand the extent of his needs. Because of his autistic and deaf behaviors, he was often left alone, locked away in a basement for hours and hours at a time. That only exacerbated Brandon’s inability to connect with the world and resulted in major behavioral problems.

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Spenser Heaps, Daily Herald

Brandon Everett carries a crate of snacks to eat on the bus ride home from the Utah School for the Deaf in Ogden on Friday, March 11, 2016. Everett lives at the school during the week and takes a bus home Friday afternoon to Pleasant Grove, returning to the school Monday morning.

His sister, Megan Everett, is the one who first met Brandon, as she used to babysit for Brandon’s birth family and was a witness to his struggles. She often dreaded going to those babysitting jobs because of Brandon’s behavior, but her heart also broke as she watched the family’s interactions.

“It would just bug me how they’d deal with Brandon. It was sad; they didn’t learn or invest their time in learning about autism,” Megan said.

This connection led to Brandon becoming a part of the Everett family, and the change in him began almost immediately. Megan attributes that to their mom.

Laurie isn’t one to shy away from a challenge. The Everett children all have been adopted at varying ages, some as newborns and some from foster care, and a few of them have intellectual and physical disabilities. So Laurie tackled working with Brandon as she always has, by learning as much as she could.

“My mom studied autism. If she doesn’t know something, she’ll research it until she understands it,” Megan said. “My mom took the time to teach him, getting him into programs, working with him.

She got him to look at her, so he knew she wanted to speak to him. Once she did that, things got better.”

Early on, Laurie taught herself sign language so she could communicate with Brandon, but his 30

The Autism Puzzle in Utah County

autism blocked him from needing or wanting to interact with others, so she was frustrated in those early efforts. Still she pressed on with learning how to connect with him, in whatever form that was, and now she’ll tell you that the son they have is extremely different than the one he was before age 9.

She also firmly believes there were a few other things that contributed to early improvements.

Before he came to their family, the Everetts were on a fairly healthy diet that eliminated all cow’s milk and artificial dyes, and the family uses a nutritional supplement, Kyani, as well. As Brandon adjusted to the dietary changes and Laurie added the supplement to his routine, many of his behaviors calmed down and went away.

Brandon loves the movie “Finding Nemo,” doing regular puzzles and word puzzles, and was obsessed with calendars for a long time. Laurie said when he was younger, you could give him any year, and he’d be able to write out the whole calendar for it.

But still to this day, his family feels he is still very isolated in his own world — a world they can’t seem to break into. And it saddens them.

“His capacity to interact has changed a lot over the years, but he’s still in a world he’s a prisoner to, that we can’t get to,” Laurie said. “He’s really a puzzle.”

With the dual layer of autism and deafness, the family never really knows what is inhibiting Brandon, and what skills or resources will help.

Both have hindered his ability to communicate for so very long, but the family — especially Laurie — has hope. In just the past two years, he’s been starting to interact and reach out to people.

In late 2014, he started attending the Utah School for the Deaf in Ogden. Each week, on late Sunday night, he is bused up to Ogden and spends the week living and learning there. On Friday afternoon he comes home to Pleasant Grove to spend the weekend with his family.

According to Ben Platt, his teacher at the school, Brandon has made amazing strides in communication and interaction. So many of Brandon’s previous school experiences had tainted his educational interactions that he was initially fearful and resistant to Platt’s attempts to reach him.

Using a lot of patience and some goofy humor, Platt convinced Brandon he wasn’t in trouble all the time. During those first few rocky months, Platt also observed Brandon’s autistic traits and taught himself to differentiate between behavioral problems and autistic mannerisms.

Spenser Heaps photos, Daily Herald

Left: Brandon Everett signs while working with his teacher Ben Platt on Friday, March 11, 2016 at the Utah School for the Deaf in Ogden. RIght: Brandon Everett sits at a desk toward the end of a school day on Friday, March 11, 2016 at the Utah School for the Deaf in Ogden.

Brandon Everett walks across campus with his teacher Ben Platt on Friday, March 11, 2016 at the Utah School for the Deaf in Ogden.

To hear Platt talk now, there’s a genuine fondness and admiration for who Brandon is becoming. You can hear the excitement Platt has for Brandon’s future.

“It’s exciting to see him interacting with the other students here. That didn’t happen before. He’s been awesome,” Platt said.

Communication is still a struggle, and again, that can be attributed to Brandon’s autism.

While Platt and the Everetts feel Brandon is high functioning, Brandon is not one to initiate interaction. And he still isn’t able to share feelings and thoughts. At school, Platt is able to see when Brandon is upset about something, but Brandon cannot express why. Platt must ask around to find out from the other students who might have seen what upset Brandon.

This is also one of the biggest stumbling blocks for his parents. Vance watches Brandon pace around the family’s large backyard each weekend, wearing paths into the grass between the fruit trees.

“It’s so sad to me. I wish we could communicate with him,” he said.

As with most who suffer from autism, getting to those emotions and feelings is always tricky.

“With all my heart I wish he could talk,” Laurie said. “There will be times when he’s crying, wiping his eyes, and there’s no way on earth to find out why. Most of the time we can’t figure out what happened. The biggest thing is we wish he could express his feelings.”

But for one who’s been trapped in his own world for so long, grappling with two ailments that isolate him from the vast majority of society, Brandon is

a very happy, very easygoing person, with a quick and beautiful smile. He has a quirky sense of humor that is starting to manifest itself at school, and still surprises Platt as he continues to work with him.

And recently he’s started reaching out to people, wanting to relate. Laurie Everett laughed as she shared that he often instigates hugs with her now — something so common for most mothers, but rare for a mom of an autistic child.

“He gives the best hugs now. He hangs on and doesn’t let go right away. He never used to initiate them before,” she said. “He also is excited about people — he’s often the first to answer the door when someone rings the doorbell.”

At school, Platt spoke of another recent development. In January, Brandon noticed Platt still had an old 2015 calendar on the wall. This time, Brandon’s love for something helped him connect.

Brandon communicated to Platt that the calendar was old, and Platt told him to go to the front office to ask for a new one. He did so, completely on his own, came back and tacked it up.

Then he got Platt’s attention, and pointed out one of the holiday Mondays when there was no school.

Platt teased him by making a crying face to that information, which totally cracked Brandon up.

The thing that was most important to Platt though, was that Brandon then got the other students’ attention, and showed them Platt’s reaction to having no school.

“That was the first time he’s reached out to the other students,” Platt said.

Since then, this has become a running joke, Brandon often pointing out the next time there is no school, so he can giggle at Platt’s expression.

Brandon’s quite brilliant with basic math, and Platt has been using that skill to benefit Brandon, as well as others. He recently taught Brandon how to teach another student to count money. That simple task empowered Brandon in knowing that he can help others.

Daily Herald • heraldextra.com

31

“With Brandon and my other students, a lot of times they don’t know that they can actually understand things,” Platt said. “I have to show them that they are capable of understanding, and if they don’t get something, they just need to get help.

But that they can understand and do things.”

Brandon still doesn’t know a lot of sign language beyond one-word phrases or commands. But as he’s developed at the school, he’s been able to find other ways to communicate.

One day Platt didn’t realize Brandon hadn’t finished his lunch, and told him it was time to go.

Brandon didn’t know how to sign that he wasn’t finished eating, but looked at Platt with a very pleading, questioning face and pointed to his sandwich. Platt signed to him “Do you want to finish your sandwich?” and Brandon replied “Yes.” This small type of breakthrough excites Platt, and gives him hope for Brandon’s future. The deaf school can only service Brandon until he is age 22, so Platt and others at the school work with Brandon teaching him life skills, and hope to see further progression of his communication abilities, so he can eventually live as independently as possible.

The Everetts now feel that is a real possibility.

“The program is teaching him to live on his own, and helping him discover something he’ll be good at, and can do the rest of his life,” Vance said.

“I don’t necessarily see him getting married, but we want him to be as independent as much as is possible.”

“He’s at a time in his life where we don’t know

SPENSER HEAPS, DAILY HERALD

Brandon Everett looks out the window while waiting to board a bus to go home at the end of the school week on Friday, March 11, 2016 at the Utah School for the Deaf in Ogden.

where he’ll go in life,” Laurie said. “But there are a lot of new things happening to him. And it’s neat to see what he’s capable of.”

Brandon has spent most of his life like his

favored friend, Nemo, swimming alone in a world he doesn’t understand. But now, as an adult, he’s starting to find himself, and those who love him are thrilled.

The best kept secret in Utah County.

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32

The Autism Puzzle in Utah County

A balloon launch at an Autism Resources of Utah County Council event.

Courtesy

THEIR VOICE

Leading the charge ARUCC — A powerhouse resource for autism in Utah County Story by Monica Villar

I imagine that one of the first questions a parent asks themselves upon receiving a diagnosis of autism spectrum disorder (ASD) for their child is, “Where can I go?”

There must be a sense of seclusion and fear thinking that you and your family are alone in this journey. Helping that family and individual cut through the confusion and find helpful resources is the reason that Autism Resources of Utah County Council (ARUCC) was created.

ARUCC began in 2010. Its original intent was to combine local resources and connect as an organization with families to create more meaningful services in Utah County. The first meeting was held in the fall of 2010 and included leaders from Wasatch Mental Health, Scenic View Academy, Easter Seals, Clear Horizons Academy (now Utah Autism Academy at Clear Horizons), United Way and Kids on the Move.

The first task was to become familiar with one another and learn about what each group each did.

The next step was to increase collaboration, trade referrals between organizations, provide smoother transitions for families and children and increase awareness and support to families through combined efforts — and ultimately to expand available resources for families to access. The long-term and ongoing

goal was to provide training on autism-related topics, because at that time it was recognized that there was a shortage of applicable information readily available.

As the organization became more solidified, school districts, universities and other entities were also invited to attend.

In April 2011, ARUCC’s first event was held, which was titled “Uplifting Celebration for Autism.”

Support for the first event was solidified when Utah Valley University volunteered to provide the location and shirts, as well as many other commodities and supports. Four hundred individuals came to this balloon launch and carnival, which only emphasized the need for ARUCC to continue to exist and grow.

This year the “Uplifting Celebration for Autism” balloon launch will be held at UVU on Saturday, April 16 from 11 a.m. to 1 p.m. The event is free and includes many booths that consist of games, food, face painting that is all geared to support individuals in the spectrum. Immediately following the carnival is the annual balloon launch where 3,000 balloons will be released from the baseball field to commemorate Autism Awareness Month.

One of the unique components of ARUCC is the ability for all organizations to share the resources in an effort to support families and children in a more powerful format. It was recognized early on, that together, more gets accomplished. All members agree to bring what they can to help, but to leave the

recognition to the joint efforts of the entire group.

Basically, the principles learned early on — that sharing is best — apply significantly to the power and substance behind ARUCC. ARUCC also coordinates an annual family-friendly carnival. This takes place every June, and includes access to bounce toys, pony and wagon rides, snow cones, balloon animals, and food. This year the carnival is scheduled for June 11.

ARUCC has also provided autism specific all-day symposium/workshops on social stories, inclusion, pivotal response therapies and executive functioning.

Additionally, an annual Heroes for Autism award is given to a peer nominated and majority voted person(s) who has significantly contributed to autism services and needs in Utah County.

Over the years, the group has strengthened and become even more cohesive. In addition to the original members, ARUCC now includes UVU, BYU, RISE Services, Family Support and Treatment Center, Chrysalis, Kids Who Count, Alpine School District, Nebo School District and Provo School District.

As new families receive the diagnosis and new information continues to emerge, ARUCC will continue to be a unified source to provide the help that ensures success for families, community and the individuals making their way through the spectrum.

For information, visit the website http://arucc. org.

Daily Herald • heraldextra.com

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ABOVE: Matt Evans plays with his son Beckett during a family home evening night on Monday, March 7, 2016 at their Orem home.

The Evans family has two children with autism, Cairo, 8, and Beckett, 4.

RIGHT: The Evans family plays a picture game during a family home evening night.

Sammy Jo Hester photos, daily herald

34

The Autism Puzzle in Utah County

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Meeting the family: Cairo

When I first met Cairo, she excitedly chatted with me about how much fun she had in school and how awesome her teacher is. When Cairo gets talking, she doesn’t stop.

“Can I show you my … Can I just show you the picture of them in my … I have the yearbook!” she blurts, sprinting to her room.

“Sorry, she tends to ramble,” Brooklyn told me as Cairo ran to grab her yearbook from Odyssey Charter School.

As she flipped through her yearbook, showing me crazy hair day and her favorite teacher, she did so with a hint of melancholy.

Cairo will start third grade at Spectrum Academy in Pleasant Grove in the fall — a change she’s less than thrilled for.

“I really want to stay at Odyssey because I feel really comfortable there,” she said. “And I have so many friends.”

“We feel lucky that we got into Spectrum, because I know there’s a big wait,” her mom said.

“Well, I’m really upset that I got accepted,” Cairo retorts.

Routine changes for Cairo and Beckett are difficult to accept. A typical symptom of autism is a desire, almost an obsession, with order, including in schedules.

This was a telling sign of Cairo’s autism early on for Brooklyn and Matt. Once Cairo was diagnosed by Dr. Rob Dindinger, her mom said it all made sense.

“Cairo is a very intelligent young woman who has recently been diagnosed with Autistic Disorder,” Dindinger’s diagnosis letter reads. “Cairo struggles in high stimulus environments, dealing with social stress, is easily distracted, and struggles to control inappropriate impulses.”

Now that Cairo knows she has autism, she is aware that some of her typical social processes, like interrupting or rambling, aren’t always appropriate.

And this embarrasses her tremendously.

“The pattern is losing control and then being embarrassed or humiliated,” Brooklyn said.

While taking part in one interview, Cairo became emotionally overwhelmed and hid, sternly telling her younger sister, Samara, “I want to be left alone under the table.”

But when I returned for the next interview, Cairo welcomed me at the door, sincerely apologizing for her prior misconduct. She was very well-behaved (as well-behaved as any 8-year-old can be) the rest of the evening as she played with her family.

This pattern, however, is trying on relationships.

Brooklyn said other mothers in the neighborhood have canceled play dates with Cairo after she misbehaves.

TOP LEFT: Matt Evans holds three of his children during a family home evening night on Monday, March 7, 2016 at their Orem home.

Left: Matt Evans plays with his daughter Milan.

Sammy Jo Hester photos, Daily Herald

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Sammy Jo Hester, Daily Herald

Brooklyn Evans holds her son Beckett, 4, during a family home evening night.

“We’ve had many, many play dates over here where it was just one time, and then they never came back,” Brooklyn said. “Before I knew what was going on, I took that very personally. It was really hard and I felt really bad.”

She said she’s worried Cairo’s bold personality intimidates other girls her age. Ironically enough, as she said that, Cairo ran in from the backyard, loudly, loudly proclaiming, “I was outside barefoot!”

“Are you calm? Because this is a calm room,” her mom told her.

“Yes!” Cairo shouted. She clearly wasn’t.

Cairo is extremely bright and will excitedly engross herself in arts and math for hours on end. This focus on fine activities helps her relax and focus.

It’s her superpower, as Dr. Dindinger told her.

“You have a superpower, you’re super smart,” Brooklyn told Cairo. “But, autism also means things you have to work on.”

“I have high functioning … Albert Einstein had it, just for a fast fact,” Cairo said straightforwardly.

“Some people think he did. … And she has no ego at all,” Brooklyn said with a laugh, with a wink at Cairo.

Samara

“Sometimes, I feel like I’m kind of second best,

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The Autism Puzzle in Utah County

because my sister and brother always get more attention,” Samara said, slurring her S’s through missing front teeth.

Samara, age 6, nicknamed Sammy, is sandwiched between her two siblings with autism, and often feels less important as a result. Samara excitedly wishes she had autism.

“I want to be like my brother and sister,” Samara said.

“Because you want to get attention like they do? Even though it’s the kind of attention where they have to go doctor visits, therapy and special schools?” Brooklyn kindly asked her. Samara nodded, smiling.

Brooklyn said teaching Samara about how her brain works helps her understand what it means to be neurotypical, or to not have autism, and why that’s OK. “I remember the first time she said, ‘I wish I was autistic,’ my immediate reaction that I was going to say was, ‘Well, no you don’t. You don’t want to be autistic,” Brooklyn said. “But then I didn’t, because I thought, I don’t want to degrade or demean her siblings because again, that’s not all of who they are. And it gives them some good skills like high intelligence. It’s a fine line.”

But this means Brooklyn and Matt are hyper

aware of when Samara is getting proper attention.

And when Samara doesn’t, she mimics her siblings by throwing tantrums and misbehaving.

“Sometimes, I think she gets taken a little for granted,” Brooklyn said. “And that’s hard. So then she’ll act out. … It’s the squeaky wheel gets the grease kind of thing.”

One of Samara’s best friends is her older sister.

“They are tight friends,” Matt said. “Sammy tends to be more shy, so she [Cairo] pushes Sammy a little more publicly … and then Sammy has really helped Cairo. She’s been a friend; she’s always been there for her.”

Samara is more similar to her siblings than she sometimes lets on. She’s highly intelligent and especially enjoys the arts.

But she still struggles to understand how being neurotypical results in different social expectations.

“When Sammy starts to throw a tantrum, and we tell her that’s not appropriate, then [she asks], ‘Well why are they allowed?’” Matt said, illustrating an inadvertent double standard.

Beckett

“Beckett, don’t hang on that,” Brooklyn calls, as her son climbs a decorative tree.

“Hang on that?” Beckett replies.

Sammy Jo Hester, Daily Herald

The Evans family plays a picture game during a family home evening night.

“No, Beckett, get down,” his mom sternly says again.

“Hang on that,” Beckett repeats.

Though Beckett is high functioning like his sister, he experiences more severe challenges, like hyperactivity, poor adaptive functioning and echolalia, or repetition of other’s words.

“You might say, ‘How are you, Beckett?’” Brooklyn said. “And instead of saying, ‘Fine,’ he’ll say, ‘How are you, Beckett?”’

Beckett is becoming proficient in pronouns, but he still struggled with verbally expressing to me what his favorite ice cream was, or how excited he was about his birthday in early March.

While it took five or six visits to diagnose Cairo with autism, it only took one for Beckett.

“Testing for Beckett has highlighted several challenges such as hyperactivity, inattention, poor social skills, stuck thinking, poor communication, struggles transitioning from one activity to another, poor adaptive functioning, struggles with following directions and challenges dealing with highly stimulating environments,” reads Beckett’s diagnosis letter.

Beckett isn’t self-aware of his autism like Cairo.

For the moment, he’s blissfully unaware of his neurological condition.

“For Cairo, this year at school has been her hardest so far because she became aware that she was different from the other kids,” Brooklyn said.

“It’s been sad to think about Beckett having that realization.”

For now, Beckett enjoys climbing over everything, including furniture, his parents and even myself during interviews. He takes a small toy with him everywhere and rarely stops moving, a hallmark indicator of not just a squirmy kid, but of autism.

“With Cairo, we had been seeing signs for so

long, it was more of a relief,” Brooklyn said. “It was hard with Beckett. We had just started to see the signs with him, but he is more severe. So we’ve had mixed emotions.”

Beckett’s frustration occurs in cycles, just as Cairo’s. When Beckett has difficulty expressing himself, especially vocally, he acts out, and will do anything from biting furniture to flipping tables.

But like his older siblings, Beckett is highly intelligent, has an entertaining lack of social boundaries and will cheerfully crawl on anyone within a 5-foot radius.

Milan

“She doesn’t seem to exhibit the same signs as Beckett exhibited or that Cairo’s exhibited,” Matt said. “[But] sure, the concern is there.”

Milan is a little more than 1 year old, and is a happy, babbly, sparkly-eyed baby girl. She is too young to be diagnosed; most children can’t be diagnosed with autism until closer to the age of 2.

But that doesn’t mean the little trooper hasn’t already faced physical challenges.

“She has scoliosis, so we’re dealing with that,” Matt said.

In early March, Milan had a cast put on her back to help correct her scoliosis. For now, that is Milan’s only developmental challenge.

“We know now what to watch for, though,” Brooklyn said.

Brooklyn and Matt

“It’s far from a tragedy,” Matt said. “I consider myself very fortunate that I can connect with each of my children.”

“Matt made the comment the other day that he’s grateful our kids can show affection; not all autistic kids can do that,” Brooklyn said.

Both Matt, a real estate agent, and Brooklyn, a stay-at-home mom, are still grasping to understand what autism is and how it manifests itself differently in both children.

“We knew something was going on, but until the psychologist said the word ‘autism,’ we hadn’t ever considered it, because we didn’t know anything about it,” Brooklyn said.

“We’re so in the beginning part of this. I … I don’t even know what to say,” Matt said with a hesitant laugh.

The Evans’ are active members in The Church of Jesus Christ of Latter-day Saints. When first getting to know the family, I initially assumed that knowing two of their four children had autism would perhaps test their faith, or that it would be a trial of testimony.

But it was the exact opposite.

“It didn’t make me feel despair at all,” Brooklyn said. “I just feel like this is how they’re meant to be.

This is who they’re meant to be. We’re meant to be their parents. That’s clear, and we love them as they are.”

But just because they haven’t had a crisis of faith doesn’t mean their patience hasn’t been strained.

“Before we knew Cairo’s diagnosis, there was a lot of tension in the home because we disagreed on how we should parent her,” Brooklyn said. “We were butting heads because we just didn’t know how to deal with the outbursts, the hyperactivity.

“Actually, it became a lot better once we knew what we were dealing with. But it’s hard. It’s hard to be patient.”

“Every family is different,” Matt said. “And ultimately, you have to go with what is going to work well with you.”

Embracing autism

Brooklyn and Matt said freely sharing about their children’s superpowers has helped create a bridge of understanding with family and friends.

“You’re best served to be open and be willing to take questions. Because if you try to hide it and downplay it, in a way, that makes it worse,” Brooklyn said.

This open attitude is a double-edged sword.

Brooklyn and Matt are always concerned about bullies who don’t understand Cairo and Beckett.

“My concern is social for both of them,” Matt said.

“We worry about that,” Brooklyn said. “We’ve heard about kids [with autism] being bullied.”

The derogatory, negative connotation surrounding the word “disorder” is a big reason the Evans’ practice and spread empathy.

“That’s what’s missing before people know,” Brooklyn said. “When you know, you have empathy, and you realize it’s not always in their control.”

Cairo and Beckett have superpowers, but they’re also typical kids, and that is why Brooklyn and Matt openly talk about autism. They want people to know their superheroes’ secret identities.

“They are not their diagnosis,” Brooklyn said.

“This is something they happen to have, but it’s not who they are.”

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courtesy and Sammy Jo Hester, Daily Herald

LEFT: Connor Susov and his parents, Richard and Karen Susov, in Salt Lake City visiting the Tabernacle Choir and Orchestra at Temple Square just after his mission.

Susov, diagnosed with autism, served a Young Church-service Mission for The Church of Jesus Christ of Latter-day Saints. RIGHT: Jonathan Ormond works in his office at Vivint Solar in Orem on Friday, March 11, 2016. Ormond has autism and previously served a mission for The Church of Jesus Christ of Latter-day Saints.

Called to

serve

LDS members with autism find ways to serve faithful missions

H

story by Genelle Pugmire

e was called the “singing missionary” — the elder who sang his heart out around Temple Square in Salt Lake City.

Connor Susov, age 26 of Pleasant Grove, was also the self-designated cheerleader of the Mormon Tabernacle Choir and Orchestra at Temple Square. A full-time Young Church-service Missionary, he also has autism.

Susov and others like him who want to serve in their organized faith have one goal: to hasten the work of the Lord. The Church of Jesus Christ 40

The Autism Puzzle in Utah County

of Latter-day Saints provides a way to make that happen through the Young Church-service Mission.

Many youth with autism, and other disabilities, are having enriching and life-altering experiences as they serve in numerous capacities.

Meet the missionaries Elder Connor Susov

Every Sunday for two years, Susov and his companion could be found on the very front row of the Salt Lake Tabernacle enjoying another “Music and the Spoken Word” broadcast. At the end of each broadcast, Susov would be the first to pop up and start the crowd clapping and encouraging a standing ovation.

“It became my favorite spot,” Susov said. “I would be the first one up and applauding. The choir members took notice.”

The last day of Susov’s last mission, the choir and

orchestra returned the favor and gave him a farewell ovation. He also received a card with their signatures and a couple of their albums. They nicknamed him “Favorite Elder.”

Susov is a unique servant of the Lord. He was diagnosed with high-functioning autism, attentiondeficit/hyperactivity disorder (ADHD) and obsessive-compulsive disorder (OCD) when he was in kindergarten.

Susov’s keen desire to serve an LDS mission has always been with him, but he says he can really pinpoint the time it became important. He was about 8 years old and watched his brother leave on a full-time mission to Perth, Australia. That was when he knew.

At age 19, Susov had a visit with his bishop, a local ecclesiastical leader. Knowing he had autism, the bishop investigated the potential for Susov to serve. A full-time proselyting mission was not possible.

Courtesy

Young Church-service Mission photographed with Johnathan Ormond in 2014 in Salt Lake City. Ormond has autism and served a Young Church-service Mission for The Church of Jesus Christ of Latter-day Saints.

However, Susov loved the LDS Church’s seminary and institute classes for youth and young adults, and there was a service mission seeking someone to help handicapped students in seminaries and institutes in the Salt Lake City area.

“I enjoyed seminary and institute,” Susov said. “I knew I would like it.”

So, for two years Susov took the bus each weekday from Pleasant Grove to Salt Lake City to serve his mission. Just as the end of his mission approached, he was asked to serve for another six months to help a student, which he did.

But it still wasn’t the mission he was hoping to have. He wanted to live away from home, have a companion, teach and baptize.

Susov was relentless.

Again, the bishop looked into what could be done for Susov. Three months later, Susov was on his third mission serving with a companion and living in an apartment in Salt Lake City. He was assigned to serve in the Family and Church History Mission; he also spent time doing temple work.

At the beginning of his third mission Susov was asked to introduce himself. He was not shy in saying his autism was what got him the privilege of so much service.

“I have autism but I am not ashamed of it; it

doesn’t limit what I can do and it doesn’t stop me.

The only problem with it is that it keeps me going on a day-to-day basis,” Susov said. “I am thankful to my Heavenly Father that I have autism ‘cause if I didn’t I wouldn’t be here today, meaning I wouldn’t be on this mission and I wouldn’t be who I am.”

In all, Elder Susov served 57 months — that’s four years and nine months — as a missionary. While it may not have been a proselyting mission, Susov believes he was able to do what the Lord needed him to do.

Elder Johnathan Ormond

Those who have served an LDS Young Churchservice Mission are well acquainted with these words of the Book of Mormon prophet and leader King Benjamin: “When ye are in the service of your fellow beings ye are only in the service of your God,” in the Book of Mosiah chapter 2 verse 17.

Serving with autism shines a brighter light on the abilities of many youth, rather than on their disabilities.

“I’ve known since I was a kid I’ve wanted to serve a mission,” said Johnathan Ormond.

Wanting to serve and getting to serve were two different things for Johnathan.

“We knew as soon as he was born he was autistic,” said Shanna Ormond, Johnathan’s mother. “The doctor said it was just a developmental delay.”

While Johnathan wanted to serve a proselyting mission, an investigation into the possibilities came back with the answer “no.”

“We tried for a full-time mission,” Shanna said. “The stake president (an area church leader) looked into things, but he didn’t fit some of the requirements.”

So, the stake president went a different direction, directly to the Young Church-service Mission.

When Johnathan was looking at the possibility of a mission, he was able to tour the two areas that seemed best for his skills. One was the Bishop’s Storehouse and the other was the Digital Center.

“He said he felt drawn to the center,” Shanna said.

“The mission and Johnathan were made for each other,” said Ramdas Ormond, Johnathan’s father.

“The church is looking for more opportunities for service.”

Johnathan received a mission call to the Orem Digital Processing Center. He converted books into PDF files so that the files could be searched digitally; these are books that have genealogical value.

“I processed about 300 books a day,” he said.

He was hastening the work.

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Johnathan served a one-year Young Church-service Mission. Monday through Thursday he worked at the center, on Friday he worked at an LDS temple and on the weekends he was off.

“I felt like I was helping people to have access to their ancestors and further hasten the work along,” Johnathan said of his mission. “It doesn’t matter what the service, it’s the work of salvation. It’s all the same work.”

Johnathan served when he was 19. He is now 21 and works at Vivint Solar designing on its CAD drafting system.

Elder Jordan Norton

The Young Church-service Mission hasn’t always been available. For Jordan Norton, it was a proselyting mission or nothing.

Norton, 30, is now married with two children and another on the way. He has Asperger syndrome, a high-functioning form of autism, and ADHD. “I wanted to go on a mission because that’s what you’re supposed to do,” Norton said.

He was called to the Washington Tacoma Mission.

Before his mission, Norton had a hard time making eye contact with people when he communicated with them. He knew that wouldn’t work well for a missionary, so he got a job working at a Macey’s grocery store.

“I forced myself to look at people,” Norton said. “It helped on my mission.”

He said some of the hardest times on his mission weren’t with those investigating the LDS Church, but were with his companions. They would ask, “Why can’t you do this?”

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The Autism Puzzle in Utah County

Dominic Valente, Daily Herald

Jordan Norton plays with his daughter Lexi at North Park on Friday, March 11, 2016 in Spanish Fork. Jordan falls on the autism spectrum, but despite his adversities he was able to serve on a mission and leads an independent life.

Norton said the white handbook (a book of missionary instructions) was a good thing. It set schedules. With his autism, he said he also had to learn to discern between the letter of the law and the spirit of the law.

“I learned to understand you can’t control everything,” he said. “Socially, I still don’t pick up

on things.”

Norton sees things in black and white, and his extreme honesty was often hard for his companions to accept.

“I’m a bit on the passive-aggressive side. It takes a lot to get me angry,” he said.

He is honest to a fault.

Sammy Jo Hester, Daily Herald

Kerstin Hansen poses for a portrait at the Springville Public Library on Friday, March 4, 2016 where she works.

Hansen previously served a mission for The Church of Jesus Christ of Latter-day Saints at the LDS Genealogy Library in Salt Lake City. She was diagnosed with autism at age 23.

“There were some times when it was rough because of honesty and wanting to do the right thing,” Norton said of his mission. “I work every day on trying to be humble.”

He said it also didn’t help to be called to the northwest, where the weather is notoriously gray most of the time. It caused him some depression.

Norton now works at NuSkin in product assembly.

He graduated as a physical therapy assistant from the online school Ashworth College, his preferred alternative due to his struggles with campus schooling.

Sister Kerstin Hansen

Jordan Norton and his companions may have had an easier time if he had the help Sister Kerstin Hansen had to offer.

At age 21, Kerstin wanted to go on a full-time proselyting mission but felt it wasn’t the right timing.

Two years later, at age 23, she was finally diagnosed with autism.

“I wish we had known when she was born,” said Kelli Hansen, Kerstin’s mother. “When she was a baby, any time there was any loud noise around her she would scream — even in utero. Noise made her jump. She didn’t smile until she was 6 months old.”

Friends didn’t understand. “I hated being called a retard,” Kerstin said.

When her daughter was 10, Kelli took her to a child psychologist. Kerstin was diagnosed with depression, but her medications didn’t work — that information was included on her medical records for her mission.

With new knowledge of her diagnosis, it was time to find the mission opportunity right for her.

By the time she was 24, Kerstin had received a call and began serving at the Family History Library in Salt Lake City. She had a companion who was

confined to a wheelchair, and they lived in an apartment close to the library. She served a one-year mission.

“On my mission I was told not to proselyte, but if asked a question we could answer them and then refer them to the Temple Square missionaries,” she said.

Knowing how difficult it was for her and others serving with autism, Kerstin took notes and put together a special handmade publication.

“I put together a booklet for our missionaries on how to look for signs and how to work with autism,” she said. “There is no look to autism. If you know what to look for you may see it.”

Kerstin said she enjoyed her mission and knew she was doing something that needed to be done. She was doing things that proselyting missionaries didn’t get to do. Not only did she help patrons look for their ancestors, but Kerstin was also allowed to do her own family genealogy and work at a temple.

After her daughter came home from her mission, Kelli said she noticed Kerstin had more confidence in herself, the ability to help others, and she learned to be more sociable.

Kerstin is now 32 and works in the Springville Public Library.

Elder Austen Snow

Like many other missionaries, Austen Snow, 26, was set on being a missionary and having missionary experiences.

“I was 16 years old when I knew I wanted to serve a mission,” Snow said. “I remember when I was in Young Men (an LDS youth organization for boys) that serving a mission was a commandment.

“But there were concerns about me serving a proselyting mission, and I wondered should I serve a service mission.”

Snow said he filled out the service mission papers and waited for the call. He was assigned to serve at the Family History Library working with U.S. and Canadian microfilm and documents.

He traveled from his Kaysville home to his mission by bus every day. His mission duties included processing new film and working on the second and third floor of the library.

“I developed a lot of social skills because I’d talk with a lot of people,” Snow said. “I encourage every person no matter the disability, even autism, to serve a mission; the Lord needs them. There’s always an opportunity to serve a mission.”

During the first months of his mission, Snow felt he was missing out on proselyting.

“I did a little,” he said. “I left a Book of Mormon at a friend’s house. I had to focus on what my call was.

“I had an honorable release and my mission name badge sits on my lamp table.”

One of Snow’s greatest mission memories was when a senior sister fell and hurt her legs crossing the street. They got her in a wheelchair, but her legs were hurting quite a bit. Snow said the sister missionary was inspired to ask him to give her a priesthood blessing.

“The spirit was really there,” Snow said. “There is a power in priesthood blessings. There is a power there.”

“The mission gave me valuable work skills,” he added. “After my mission I got a bachelor’s degree in history from BYU, and now I work for a market research survey firm and conduct market surveys.”

His twin brother, Bryson, also has autism, and he served a mission at the Distribution Center in Centerville.

“The church is expanding a lot more in the service missionary program,” Snow said.

The mission program

Young Church-service Missions are being provided, for those who qualify, in many areas of the church. Potential missionaries have the opportunity to choose from a number of service missions.

The Daily Herald, despite efforts to reach out to the Missionary Department of the LDS Church, was unable to obtain a response from Young Churchservice Mission representatives.

However, according to a church statement, “The purpose of the Church-service Missionary Program is to provide opportunities for members to give their time to the Lord through service missions. This important missionary force helps many Church departments and operations fulfill the Church’s divinely appointed responsibilities namely: ■■ Helping members live the gospel of Jesus Christ ■■ Gathering Israel through missionary efforts ■■ Caring for the poor and needy ■■ Enabling the salvation of the dead ■■ Serving others brings great blessings to those who serve and to the Church worldwide.”

For more information about the program, potential missionaries and their parents or guardians should reach out to their local ecclesiastical leaders and by visiting www.lds.org.

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Spenser Heaps, daily herald

Dominick Lozano, 3, sits with Behavior Technician Carolina Artica on Monday, March 14, 2016 at the Kids on the Move Autism Center in Orem.

Resources Education Alpine School District: The Alpine School District offers a variety of early interventions and continuing school support for those diagnosed with autism spectrum disorder. (801) 610-8481, http://alpineschools.org/ specialeducation/.

BYU’s Autism Connect: BYU’s groundbreaking interdisciplinary team of researchers is working together to find answers to complex autism questions faster. They study questions from different angles and across the lifespan. (801) 422-5055, https://education.byu.edu/autism.

GIANT Steps Preschool: A Utah County preschool program for children, ages 3 and up, with autism through Wasatch Mental Health.

Its unit has four classrooms with a

44

capacity of 12 children, serving a total of 48 preschoolers and their families. It has a partnership with Alpine School District to provide Special Education services for students. This relationship allows it to run the program in a typical school setting. The program runs Tuesday through Friday from 9 a.m. to 3:20 p.m. It follows the Alpine School District schedule throughout the school year but continues its program until the end of June. (801) 226-5437, http://www.wasatch.org.

Kids on the Move: The Kids on the Move Autism Center is specifically designed for children aged 2 years and above, living with autism spectrum disorder (ASD) and/or similar developmental delays. The center provides a preschool and social skills groups, but also 80

The Autism Puzzle in Utah County

percent of its services are in the family’s home, including: therapies, home visits, consultations, a toy lending library, state-of-the-art developmental assessments and autism diagnostic evaluations.

(801) 221-9930, http://kotm.org/ programs/autismcenter/.

Melisa Nellesen Center for Autism at UVU: The Center for Autism will be the first point of contact for families in Utah County and provide service coordination and resource support for autism spectrum disorder. Its objectives are to facilitate diagnostic support for UVU students; provide trainings to UVU, community partners, educators, families with individuals with an ASD, and to individuals with ASD; provide transition programming for current and potential UVU students

with an ASD; and solicit university, community, and parent input to support ongoing effective operations and partnerships. (801) 863-5517, http://www.uvu.edu/autism.

Nebo School District: The Nebo School District provides all levels of intervention services for students on the autism spectrum through individualized programs. For more information, contact Michele Thompson, district level specialist.

(801) 376-2556, http://www.nebo. edu/sped/.

Passages: A series of classes and activities that occur every semester on campus at UVU for those with autism spectrum disorder (ASD) between the ages of 18 to 40. https://www.uvu.edu/autism/ resources/asd.html.

Provo School District: The Provo School District partners with other districts and nonprofits to offer early intervention programs for those struggling with autism. Support and individualized assistance is also available as students continue through school. (801-374-4800), http://provo.edu/special-education/.

ScenicView Academy: This school is located in Provo, and is a nonprofit transitional school for adults with autism and learning disabilities. (801) 226-2550, http://www.svacademy. org/.

Spectrum Academy, NSLC, Pleasant Grove: Spectrum Academy serves more than 500 students in kindergarten through 12th grade at its North Salt Lake campus, and over 450 students in kindergarten through ninth grade at its Pleasant Grove campus. Both campuses offer many services for students, such as speech therapy, occupational therapy, individual counseling, IEP where applicable, transportation services. (801) 936-0318 (NSLC), (801) 936-0318 (NSLC secondary), (801) 785-9019 (Pleasant Grove).

Utah Autism Academy, Orem: Formerly known as Clear Horizons Academy, the school is now a day-treatment center specializing in ADA therapy integrating speech, behavioral and occupational therapies designed to meet youth’s individual learning and developmental needs. (801) 4370490.

Utah Parent Center: Maria Wiscombe at the center is a great resource for those with children in Alpine School District. maria@ utahparentcenter.org.

Organizations Autism Council of Utah: Its goal is to promote access to resources and responsible information for individuals of all ages who have, or are affected by autism, or related conditions. www. autismcouncilofutah.org.

Autism Information Resources: Provides referral, trainings on autism and information. (801) 2721051, www.utahparentcenter.org/ disabilities/autism/.

Autism Resource of Utah County Council: A council of parents, organizations and agencies collaborating to create integrated

systems of support and treatment for individuals with autism in Utah County. http://www. autismresourcesuc.org.

Autism Speaks: https://www. autismspeaks.org/site-wide/utah.

Disability.gov: Disability.gov is a federal website that contains disability-related resources on programs, services, laws and regulations to help people with disabilities lead full and independent lives. http://www.disability.gov.

Easter Seals Goodwill of Rocky Mountain: Provides services for kids and adults with disabilities including autism services. (801) 663-2091 or (801) 946-1860, www.easterseals. com/esgw.

Help Me Grow: Affiliated with United Way of Utah County, it is a call center with resources for parents and children ages 0-8. Because a majority of the calls are autismspecific, it has resources and contacts with a variety of services — even where to get a haircut. Barbara Leavitt, barbaral@unitedwayuc. org, http://www.unitedwayucv.org/ org/10444107624.html.

LDS Church missionary service: Young Church-Service Missionaries provide opportunities for members to give their time to the Lord through service missions. Church-service missionaries serve at least eight hours per week. They normally serve for 6 to 24 months. https://www. lds.org/callings/missionary/churchservice-missionary/ycsm/?lang=eng.

Medicaid: Provides information on health insurance coverage for lowincome individuals. (801) 526-0950, health.utah.gov/pcn.

Services for People with Disabilities: The Division of Services for People with Disabilities (DSPD) promotes opportunities and provides supports for people with disabilities to lead self-determined lives by overseeing home and communitybased services for more than 5,000 people who have disabilities. http:// dspd.utah.gov/.

The Autism Society: The Autism Society is the nation’s leading grassroots autism organization. The Autism Society’s website is one of the most visited websites on autism in the world and its quarterly journal, Autism Advocate, has a broad

national readership. http://www. autism-society.org.

The Golden Hat Foundation: Founded by actress Kate Winslet, “Honoring the intellectual capabilities of those with autism.” The mission of the Golden Hat Foundation is to change the way people on the autism spectrum are perceived, by shining a light on their abilities and emphasizing their great potential.

With proper education and career training, these individuals can truly realize their dreams. http://www. goldenhatfoundation.org.

Utah Autism Coalition: An advocacy group supporting initiatives that enhance the lives of individuals on the spectrum and their families. http://www.utahautismcoalition.org/.

Support groups Ability Path: AbilityPath.org is an online hub and special needs community for parents and professionals to learn, connect and live a more balanced life—through all phases of a child’s growth and development. Ability Path has published a free, downloadable resource guide “The Journey to Life after High School” that can be accessed on their website. It provides a guide to the laws that impact a child with special needs, the importance of the individualized education plan, and the different paths a child with special needs can take after graduating from high school. http://www.abilitypath.org.

A Mother’s Courage: Talking Back to Autism: A documentary charting the journey of a mother searching to unlock her autistic son’s mind.

Website features information about the film including trailers, a photo gallery, list of screening venues and links to other autism resources. http://www.amotherscourage.org.

Autism Give: A nonprofit providing support to individuals and families in Utah affected by autism. www. utahautismgive.org.

Big MAKS (Mothers of autistic kids): Provides support to mothers of children with Autism Spectrum Disorders. utahmaks.blogspot.com.

Family Support & Treatment Center, Orem: Utah support group for women married to men on the autism spectrum each month held on the 3rd Wednesday of the month from 6:30 to 8 p.m. Autism

Diagnostic Services: (801) 229-1181, http://www.utahvalleyfamilysupport. org.

Families of Autism and Aspergers Standing Together (F.A.A.S.T.): Its goal is to help reach families of autism to provide a link to resources they need and to provide an avenue for support for families who are enduring the daily struggles autism can present. http://faastutah.weebly. com/.

Grantham Autistic Information Network (GAIN): https://www. facebook.com/GAINGrantham/.

PAAS (Parent Autism Awareness & Support): PAAS is a Facebook autism support group for parents and guardians of children with autism and also their families, as well as those who would like to learn more about autism spectrum disorders. https://www.facebook. com/paas20/?fref=nf.

Sibhops of Utah County: They meet the 2nd Saturday of each month from 10 a.m. to 12:30 p.m. to enjoy fun, games and friendship as well as to discuss the joys and concerns that come from having a brother or sister with significant special needs. http://www.sibshopsofutahcounty. blogspot.com/.

The Utah Autism Project (Proyecto Autismo): Support groups and resources for Spanish speakers.

(801) 414-0693, Website queesautismo.com is currently under construction.

Therapies & interventions Applied Behavior Consultants, Inc. (ABC): A human services agency that is dedicated to enhancing the quality of life for people with developmental disabilities and learning disorders. ABC operates within the theoretical practices of Applied Behavior Analysis (ABA) derived from the philosophy of “Behaviorism.” http://www.abcreal. com.

AASPIRE: The organization has created a free, online health care toolkit for adults on the autism spectrum. The toolkit was developed by a team of researchers, adults on the autism spectrum, health care providers, and family members via a series of NIH-funded research studies. www.autismandhealth.org.

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Autisable: Autisable is an online community that connects people who want to tackle the puzzle of autism and provides an open platform where anything Autism related can be shared and discussed. http://www.autisable. com.

Autism and Behavioral Intervention, Draper: It provides intensive one-on-one ABA therapy and caters the individualized program based on the child’s strengths and needs. (801) 998-8428, www.facebook. com/Autism-and-BehavioralIntervention-265012543646156/.

Autism Journeys, Draper: Autism Journeys serves individuals on the spectrum, as well as those with related conditions and work primarily in the client’s home and community allowing for real-world situations and generalization of new skills. (801) 938-9268, http://www. autismjourneys.net.

Autism Resources of Utah County: ARUC is creating a comprehensive database of resources in Utah County that provide support and treatment to children and families living with autism, and its affiliate Autism Resources of Utah County Council (ARUCC) is a council of parents, organizations and agencies collaborating to create integrated systems of support and treatment for individuals with autism in Utah County. The database is available at www.autismresourcesuc.org. ARUC can also be followed on Twitter at @AutismUTCO and on Facebook at “Autism Resources of Utah County.”

The council website is at arucc.org.

Autism Research Centre: The mission of the ARC is to understand the biomedical causes of autism spectrum conditions, and develop new and validated methods for assessment and intervention. The ARC fosters collaboration between scientists in Cambridge University and outside, to accelerate this mission. http:// www.autismresearchcentre.com.

Autistic Self Advocacy Network: The Autistic Self Advocacy Network (ASAN) is a nonprofit advocacy organization run by and for individuals on the autism spectrum. ASAN holds that the goal of autism advocacy should be a world in which Autistic people enjoy the same access, rights,

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and opportunities as all other people, and that Autistic voices should be included in the national conversation about autism. http:// autisticadvocacy.org/ BridgingApps: BridgingApps is a volunteer community of parents, therapists, doctors, and teachers who share information on how they are using the iPad, iPhone, iPod Touch and Android devices to help people with special needs. http:// bridgingapps.org.

BYU Comprehensive Clinic, Provo: The BYU Comprehensive Clinic provides individual, couple, and family therapy and psychological assessments. Counseling sessions are $15 per session. Fees are negotiable based on financial need.

Call (801) 422-7759 to schedule a free phone intake interview to sign up for services. The Clinic provides psychological and neuropsychological assessments.

Typical assessment questions include behavioral conditions or learning difficulties. The psychological assessments are $50 and neuropsychological assessments are $400. Call (801) 422-7759 to sign up for one of these assessments. https:// comprehensiveclinic.byu.edu/ Pages/home.aspx.

Carmen Pingree, SLC: The Carmen B. Pingree Autism Center of Learning provides comprehensive treatment, education and related services for children with autism and their families. (801) 581-0194, https://carmenbpingree.com.

Chrysalis, locations across Utah: Provides a continuum of care from in-home intensive ABA services to children with autism spectrum disorders to around-the-clock, oneon-one care in a Chrysalis home. http://www.gochrysalis.com/home. html.

HALO: HALO (Helping Autism Through Learning and Outreach) is a nonprofit organization providing Soma RPM (Rapid Prompting Method), an academic instruction leading toward communication for persons with autism. http://www. halo-soma.org.

Kids Who Count: Kids Who Count is a nonprofit, early intervention program serving families within the boundaries of the Nebo

The Autism Puzzle in Utah County

School District. The mission is to empower families to optimize the developmental potential of their young children. It is part of the Utah Department of Health Baby Watch early intervention program for infants and toddlers up to age three. Each year, we help hundreds of families with concerns about their young child’s development. (801) 423-3000, 345 N. SR 198, Salem, kidswhocount.org.

National Autism Network: The National Autism Network is the largest online resource for the autism community providing a social network, nationwide provider directory, events calendar, discussion forums, autism news, expert written content and thousands of resources. http:// www.NationalAutismNetwork.com.

Provo Early Intervention Program, Provo: It provides best practice and evidenced-based developmental and therapeutic programs for children with special needs and their families in their most natural environment, which is most often at home (aged birth-3 years). (801) 852-4525, https://secure2.convio.net/es/site/ SPageServer?pagename=NRMM_ Provo_Early_Intervention.

M.I.N.D. Institute: The MIND Institute (Medical Investigation of Neurodevelopmental Disorders) is a collaborative international research center, committed to the awareness, understanding, prevention, care and cure of neurodevelopmental disorders. http://www.ucdmc.ucdavis.edu/ MINDInstitute/.

Utah Centers for Independent Living (IL): Assists those with disabilities to achieve independence in the community and are located throughout Utah. www.usilc.org/ il-centers.

Other useful websites Carly Fleischmann: Carly is an inspirational teen with autism who has found her ability to communicate through typing. http:// carlysvoice.com.

Chantal Sicile-Kira: The mother of a child with autism, she has devoted her life toward helping other families in similar circumstances. http://www. chantalsicile-kira.com.

Dr. Temple Grandin: Dr. Grandin is a professor of animal science at the Colorado State University and is inarguably the most accomplished and well-known adults with autism in the world. http://www.grandin. com.

Specialisterne: Specialisterne is a unique Danish IT company founded as the first in the world to base its business model on employing people with autism spectrum disorder. http://www.specialisterne. dk/english/.

‘Strange Son’ by Portia Iversen: “Strange Son” is the powerful tale of two mothers from opposite sides of the world who, united by their fierce determination to help their severely autistic sons, have challenged everything we thought we knew about autism. Portia Iversen is an autism advocate and author of “Strange Son,” a book about her autistic son. Portia has dedicated her life to bringing parents and scientists together to speed research work in the field of autism. http://www.portiaiversen. com.

Taylor Crowe: Taylor was a seemingly normal child until a profound regression into autism at age three. Taylor slowly progressed from a young child who was given virtually no hope by the physician to an artistically gifted student. http:// www.taylorcrowe.com.

The National Autistic Society: The National Autistic Society champions the rights and interests of all people with autism and aims to provide individuals with autism and their families with help, support and services that they can access, trust and rely upon and which can make a positive difference to their lives. http://www.nas.org.uk.

Unlocking Autism: Included in Unlocking Autism’s mission is to bring the issues of autism from individual homes to the forefront of national dialogue. http://www. unlockingautism.org.

Wrightslaw: Parents, educators, advocates, and attorneys come to Wrightslaw for accurate, reliable information about special education law, education law, and advocacy for children with disabilities. http:// wrightslaw.com.

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“The moment when she looks me in the eyes and we finally connect gives me hope for our future.”

Join us on Thursday, April 21, for the groundbreaking of the

MELISA NELLESEN CENTER FOR AUTISM 9 a.m. Groundbreaking • West parking lot of the McKay Education Building

“UVU is committed to becoming the regional hub for education and resources dedicated to urgent needs of autism.”

MATTHEW S. HOLLAND, UVU PRESIDENT

Utah Valley University continues a 75-year tradition of serving the needs of the community.