Thanks to pioneering parents, scientists and doctors, Phoenix is becoming a world leader in therapies and support for people with autism spectrum disorder
Twenty-three years ago, James Adams and his wife, Marie, became increasingly alarmed that their 2-year-old daughter, Kim, wasn’t saying her first words, looking into their eyes or responding to her name. They took her for an evaluation, and the doctor delivered crushing news: Kim had autism. “We were told it was a lifelong, incurable disorder, and there was nothing to do for it, and just get ready to institutionalize her,” says the Arizona State University professor.
The 1990s were not so long ago, but in the world of autism, they might as well have been the Dark Ages. Some doctors still believed the myth that “refrigerator mothers” caused the condition with cold neglect. Resources for families were primitive to nonexistent. Parents and children were exiled to a social Siberia.
Around the same time, Denise Resnik received the same scary news about her 2-year-old son, Matt. “We were told to love, accept and plan to institutionalize our son,” she says. “And we found that wholly unacceptable.”
Resnik, founder and CEO of DRA Collective communications, parlayed her PR skills into starting a movement. She formed a parent support group that soon outgrew the coffee shop near Paradise Valley Mall where they met. In 1997, she and another parent teamed up with her son’s doctor, Raun Melmed, to create the Southwest Autism Research and Resource Center (SARRC). The Phoenix nonprofit is now one of the most respected autism organizations in the country. This summer, Resnik will launch First Place Phoenix, a residential property and training program for adults on the autism spectrum.
Meanwhile, Adams switched his career focus from materials science engineering to investigating causes and treatments of autism. He and his fellow ASU scientists are making promising advancements in alleviating autism by boosting bacterial diversity in the gut. These are just a few of the trailblazers giving hope to families affected by autism through groundbreaking research, innovative education and empowering support groups. Their collective efforts are making the Valley a more inclusive place for people with diverse abilities. It’s why, in 2016, PBS called Phoenix “the most autism-friendly city in the world.
In the 1960s and ’70s, autism was estimated to occur in about one in 5,000 children. Today, it’s one in 68, according to the CDC. In the interim, the disorder was redefined as autism spectrum disorder (ASD), which encompasses a range of characteristics, from impaired communication to repetitive mannerisms to trouble connecting emotionally. But behaviors vary widely. Some people on the spectrum are nonverbal; some are eloquent. Some are severely cognitively impaired; some are savants.
“As we say, if you’ve seen one child with autism, you’ve seen one child with autism,” says Melmed, a developmental/behavioral pediatrician and medical director of the Melmed Center in North Phoenix. The expanded definition, coupled with the precipitous rise in prevalence, invites uncertainty. Did the physicians who previously diagnosed children on the spectrum as “mentally retarded” or “developmentally delayed” simply not understand what they were seeing, or have a more accurate term for it? Or is the condition truly on the rise? As Melmed asks: “Is [autism] new, or has it always been there? Is it just old wine in a new bottle with a new label?”
There’s reason to think it’s both, he says. More people are being funneled into the spectrum diagnosis, but something new and mysterious really is happening to children. “Children with autism… are so enigmatic,” says Melmed, whose interest in special needs kids stems from growing up in apartheid South Africa, and its culture of “othering” and separation. “I think that’s why parents are so incredibly active in trying to pursue answers. Because they know there’s something hidden and special about their kids. And they feel that if they could just pull back the curtain, then the true self would be there.”
So far, no easy answers have been found. Hundreds of genes are associated with risk for ASD, and multiple environmental factors come into play. Autism is so complex it’s unlikely we will identify a simple cause that fits snugly in a newspaper headline. But mounting evidence is driving scientists like ASU’s Adams to search for causes and treatments not in the brain, but in the body’s other undiscovered country: the microbiome. The crenulated coils of our colons are colonized with a veritable Brazilian rainforest of 39 trillion to 100 trillion bacteria. These microbes – along with others throughout the body – are collectively called the microbiota, while their combined genetic material is the microbiome. Gut bacteria not only metabolize nutrients and mentor our immune systems, they dialogue with the brain via neurotransmitters. “Your gut is really your second brain,” says Rosa Krajmalnik-Brown, an environmental engineer at ASU’s Biodesign Institute.
Scientists are just beginning to bushwhack through the jungle of the microbiome-brain nexus. But they suspect that blooms of pathogenic bacteria and the withering of beneficial bacteria may be linked to a welter of cognitive consequences, including, perhaps, autism. Adams knew that people on the autism spectrum commonly experience a comparable spectrum of gastrointestinal problems, from diarrhea to constipation. In 2000, he noticed a study in which researchers gave antibiotics to children with autism and severe diarrhea. Both their diarrhea and autism behaviors improved – until they relapsed a few weeks later. So Adams hypothesized that the solution was not just killing “bad” bacteria but cultivating “good” bacteria.
Claire McDonald, 4
One day in 2014, Katie McDonald was doing a Stroller Strides workout with her almost-1-year-old daughter, Claire, when she saw her friend’s even younger daughter point to her water cup and say, “Mama, wa-wa.”
“I was flabbergasted,” Katie says. “I’m like, ‘If Claire wants water, she just cries until I guess 20 different things.’” Katie and her husband noticed Claire was missing many milestones, so they had her evaluated early. At 15 months, SARRC diagnosed Claire as very high risk for autism. “We immediately jumped in with both feet,” Katie says. They took parent training classes and enrolled Claire at 18 months in SARRC’s community school.
“I had quite a few of my close friends say, ‘Katie, aren’t you going a bit overboard? Maybe she’s just delayed a little,’” she says. “But looking back now, we were right to do what we did.” Claire is now responding to her name, pointing, telling people what she wants, and is much more engaged.
He performed a study that found a strong correlation between severe GI symptoms and worse behavioral symptoms in autism. That’s when Krajmalnik-Brown told Adams that her lab had cutting-edge techniques to analyze autistic children’s microbiomes by sequencing their bacterial DNA. It’s the high-tech equivalent of botanists cataloguing plant species in a rainforest. They discovered that children with autism were missing hundreds of species of gut bacteria, most notably a fiber-fermenter called prevotella.
The presence of prevotella is associated with a high-fiber diet and exercise. So aboriginal Africans and South Americans who constantly perambulate and forage for plants have microbiomes composed of about 50 percent prevotella. “In Western Europeans it’s less than 1 percent, in Americans it’s even lower, and in children with autism, it’s an order of magnitude lower than that,” Adams says. “So you could say that children with autism have a hyper-Westernized gut, or [that] they’re missing a lot of their gut bacteria and especially missing prevotella.”
“That was exciting,” says Krajmalnik-Brown, “because if they’re missing good microbes, it’s easier to fix than if they have pathogenic bacteria.” Unfortunately, researchers say it’s currently impossible to compare autism rates between the U.S. and Africa or South America because awareness and the number of diagnosing physicians differs drastically. But a National Health Statistics Report from 2015 showed that rates in the U.S. were the third highest in the world, behind only South Korea (1 in 27) and Hong Kong (1 in 38), and anecdotally rates are believed to be much lower in developing countries.
Emboldened by the bacteria-autism link they uncovered, Adams, Krajmalnik-Brown and fellow Biodesign researcher Dae Wook Kang recruited 18 children on the spectrum. Then they used the fastest and most effective method for boosting bacterial diversity: fecal microbial transplant. In FMT, stool donors are screened so carefully that 90 percent of the population would fail to meet muster. Their poop is purified and the gut bacteria extracted. The ASU researchers administrated FMTs to each child daily over eight weeks. They don’t want the procedural details publicized because they don’t want families to try this at home, since it can cause severe infection.
The results, on the other hand, were widely publicized. Children experienced an average 80 percent improvement in GI symptoms and a 20 to 25 percent improvement in behaviors, including enhanced social skills and reduced irritability. Their microflora diversity flourished, especially prevotella. The researchers recently followed up with the children, two years after the study. Adams is mum on the still-unpublished results of the follow-up, but he says they’re “promising.”
The scientists have many hypotheses about the microbiotic mechanisms at work. Their studies revealed a potential correlation between autism and low-fiber diets among mothers and children, high antibiotic use, C-section births, and formula feeding – all of which diminish microbe diversity. Many children with ASD exhibit excess serotonin, 90 percent of which is produced in the gut. Also, fiber-fermenting bacteria produce short-chain fatty acids that feed the intestinal lining. When fiber-fermenters are starved, the lining becomes undernourished and permeable, a condition commonly seen in individuals with ASD. Waste and toxins could then leak into the bloodstream, producing an immune response that possibly cascades into the symptoms of autism.
All of that is hypothesis. No scientists are saying there is one cause of autism and that cause is an unhealthy microbiome. (One thing they are sure of is that it’s not vaccines. A study of 95,000 children published in the Journal of the American Medical Association found no link between the measles-mumps-rubella vaccine and autism.)
It’s also important to note that most microbiome-autism studies have been small and not double-blind, so we cannot confidently infer correlation, let alone causation. That’s why Adams, Krajmalnik-Brown and Kang are moving to the next level of scientific rigor. They’re currently recruiting 84 adults with autism for a placebo-controlled, double-blind experiment with increased FMT doses and extended treatment time. They’re also recruiting a control group of 84 non-autistic adults with and without GI problems.
Meanwhile, SARRC is participating in studies involving intestinal enzymes, oxytocin and fMRI brain imaging. The advancements are exciting. But as Melmed points out, potential cures are years away, so what’s important for families now is educational and social support. In that arena, too, Phoenix is leading the way.
Roman Ribeiro, 14
The social-centric teen years are especially challenging for kids on the spectrum. Roman dreaded going to his public school every day. “My old school was a big, big, big letdown,” he says. “There was one time I noticed I was really different from anyone else. I got pulled out a lot [into the special resources room], and almost no one else did.”
Now he attends Lexis, a Scottsdale school for children who learn differently, co-owned by Dr. Raun Melmed. “In this school, everyone is different, so they all belong,” says Roman’s mother, Carrie. Roman plays several sports, which boosts his self-esteem, and his affinity for memorizing trivia helps him converse with non-autistic football fans. He also controls the lights and sound in the tech booth at his church.
“If I could go back to 10 years ago,” says Roman’s father, Matt, “I would comfort myself, because he’s always exceeded our expectations.”
There is a story behind every Arizona program that supports families affected by autism. Scotts-dale resident Char Ugol’s son Steven was diagnosed with autism at age 3. Therapies helped him improve immensely but were not covered by insurance. The Ugols joined forces with community activists, prompting Arizona to enact Steven’s Law in 2008, requiring insurance companies to cover treatment for ASD.
Meanwhile, Patty Dion’s son, Dave, struggled for years with misdiagnoses until Dr. Melmed told him at age 34 he had Asperger’s. The syndrome is associated with social and communication issues but generally high-functioning cognition. Tragically, Dave committed suicide soon after. The Dions reached out to Denise Resnik and SARRC to protect other families from the same fate. The result is ThinkAsperger’s, an app that helps parents identify potential Asperger’s and offers resources for formal evaluation.
Then there’s Resnik’s story. Thanks in part to her, support for children on the spectrum has improved dramatically in the past two decades. But resources for the burgeoning population of adults with ASD lags far behind. “We are today with adult services and support about where we were 20 years ago with [childhood] early intervention,” she says.
So Resnik is realizing a dream she had since she watched Matt ride his first school bus. A few years ago, she launched 29 Palms, an affordable living complex and training center that co-locates autistic adults with non-autistic seniors. Residents with ASD might help seniors with technology, while seniors share cooking tips during monthly community dinners. It’s the beta site for First Place, a home for adults on the spectrum slated to open this summer in Central Phoenix.
The 55 apartments will be designed with sensory-sensitive individuals in mind. Rooms will be free of buzzing, flickering fluorescent lights and overly loud appliances. More important, the resident community will foster friendships, and the two-year SARRC training academy will help them transition to independent living at 29 Palms or elsewhere. Participants will receive career and life skills classes, plus engage in volunteer work, paid internships or transitional employment. The First Place Global Leadership Institute, also on-site, will collaborate with organizations to develop autism-friendly housing across North America, and nurture leaders in ASD education and health care.
“I am excited about First Place and what it represents for families who are relocating from across the country and many families throughout Arizona, including our own,” says Resnik, founder and president/CEO. “And what it will represent for Matt as we help him create his new home and… make sure it can be the best place it can be as he continues to learn and grow. For Matt, it will represent home. For our family, it will represent peace of mind. For people who work and learn there, it will represent a brighter future for us all.”
In some ways, the Valley’s autism services have grown as Matt has grown, because his mother created them for him and others like him. Matt, now 26, is also realizing a dream. Though he rarely initiates conversation and has never asked an unprompted question, he is an entrepreneur. He is the founder and baker at SMILE Biscotti (Supporting My Independent Living Enterprise), which employs other people on the spectrum. The cookies are sold at Changing Hands Phoenix and various outlets locally, online and in Texas.
Many people on the spectrum have much to offer the workforce – they’re often bright, focused, detail-oriented, consistent and hardworking. Yet only 55 percent of adults with autism worked at any time during the six years following high school, according to the American Academy of Pediatrics. SARRC is improving that stat in the Valley by partnering with around 50 employers that recruit or hire people on the spectrum.
Kim Adams, 26
“This is awesome,” Kim says when asked about the Special Olympics sports she plays, including bowling, volleyball, cheerleading and basketball.
Because she has severe autism and a major intellectual disability, Kim can’t really converse and answers questions in a terse yet cheerful monotone. Despite her challenges, she interns 20 hours a week at Hacienda HealthCare doing laundry. She’s received three raises and now earns nearly minimum wage, recently saving enough money to go on a Disney cruise.
“Kim is just so happy being there,” says her father, ASU autism researcher James Adams. “The staff are really accepting of people with differences like her. We’re very proud that she has work she enjoys and people she gets along with.”
Like many young adults with autism, Kim lives with her parents. She’s learned self-help skills, so she could live independently with modest support, James says. He plans to create an affordable apartment complex where people with autism can help each other socialize.
SARRC is also connecting autistic children with typically developing children at its community preschools in Phoenix and Tempe. In the school’s Thunderbird Play Village, children drive toy cars on faux roads with street signs and stop signs, braking for pedestrians as they cruise to the grocery store mural. The setup subconsciously prepares them to navigate the “real world” with less stress. Watching kids play on the slide and give each other rides in a mini shopping cart, you’d be hard-pressed to tell which six of them have a diagnosis of ASD and which six to 10 are “neurotypical,” in the parlance of autism therapy.
“That’s a key part of our model,” says director Rachel McIntosh in the school’s introductory video. “If you put a group of children who all struggle socially and all struggle with their communication skills together, it’s going to be pretty challenging for them to have and build successful relationships… But as soon as you put children who do not struggle with their communication skills and do not struggle with their social skills in that environment with them, kids who have a little bit of struggle aren’t now struggling as much because they’re able to build these relationships.”
At the same time, the neurotypical preschoolers make friends and learn appreciation for children with varying abilities. The school’s 4:1 student-teacher ratio allows all children to thrive at their own pace. Trained teachers utilize applied behavior analysis, a scientific learning discipline often used to address autism. As a result, McIntosh and her staff regard the schools as active therapy centers; that’s also how health insurance providers see them. In addition, SARRC’s JumpStart program trains parents to be personal teachers to their young children with autism.
This holistic education and support is essential not only for individuals with ASD but also for creating stronger families and a more diverse, inclusive city.
“I really like to keep the big picture in mind – the child and the family and the community and the society,” Melmed says. “[It’s] figuring out how is this family unit going to thrive? How is the child’s outcome going to be optimized? How is the mother going to avoid depression? How are the parents going to avoid divorce? How are the grandparents going to be less frustrated in helping their children? And how are the siblings going to feel comfortable having a sibling with a disability that they are one day going to have to take care of?”
It’s in that spirit that SARRC asked volunteer Kathy Bosco, whose grandson has ASD, to start a Grandparents Group in 2002. “As grandparents, some of us have said, ‘OK, now there’s time for us, we’ve raised our children, and let’s just enjoy the baby,’” Bosco says. “But [an autism diagnosis] is a whole new door opening. And through that door that we must walk through, we can be a great service and a great help, and be even better people as older people.”
Every month, Bosco hosts a free brunch and invites speakers from across the U.S. to educate grandparents about ASD. Every month, new participants who have just learned their grandchild was diagnosed come an hour early to speak with Bosco. She tells them that “what they’re experiencing today is very, very sad because the hurt and the pain is not only for this wonderful grandchild with a lifelong condition, but also for the child they raised.”
But then she tells them about JumpStart, SARRC’s community schools and First Place. She hands them printouts of the latest studies in medical journals. She talks about people on the spectrum who are volunteering and starting businesses. And she tells them about her grandson, Zach, who was diagnosed profoundly autistic in 1997. The physician said the nonverbal boy would have to be institutionalized by age 10. Zach is now a sophomore at Michigan State University, vice president of his fraternity and earning a B average.
Since the 1990s, Bosco has seen remarkable advancements in both individuals and the world of autism. So, she says, “I tell them that this child will be better than they are today. I give them hope. You want hope? Look backward. Look where we started. Look where we’re going. It’s gonna get better than it is today, and you’re gonna be part of that. And it’s gonna be exciting.”
Jeffrey Lewis, 67
Jeffrey is the oldest volunteer at SARRC’s Beneficial Beans Garden, which sells produce to benefit adults with autism. He says it’s nice because he can help young interns as they prune plants, tend chickens or file paperwork.
When the Winslow native was a boy, autism wasn’t really in the vernacular. “I thought I was a little slow, and that was about it,” he says, in a halting and reserved manner. “Lucky I had my mother because in the ’50s, usually people with autism were institutionalized.”
Jeffrey served in the military as a postal clerk in the Philippines during the Vietnam era. He was diagnosed with autism in his late 30s and moved to Kansas, where he lived in a mental institution and worked as a custodian in a county jail. Now back in the Valley, he enjoys working out, taking art classes at the VA, and playing Wii bowling at his retirement community. Thanks to the social programs, he says, “It’s a lot better. A lot more open. It’s easier to talk to people.”