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MARCH/APRIL 2017 VOL. 40
IN THIS ISSUE AUTISM AWARENESS HOPE
a functional approach
SYMPTOMS
can be found early
Page 5
ALSO IN THIS ISSUE
Page 6
PROVIDING STRUCTURE Page 14 FOOD AS A PROCESS Page 16
living well ~ March/April 2017
ACCEPTANCE
bring us together
through communication
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BUILDING BRIDGES
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Also
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WHAT AUTISM MEANS TO ME Page 18
Hope:
A functional approach to autism spectrum disorders
KAY JENNINGS BSN, MHSA, MSN, PMHNP-BC, DPSc
What is autism? The Diagnostic Handbook identifies autism spectrum disorder (ASD) if a child has six or more identifiers from three major categories: Social interaction impairments, communication impairments and repetitive and stereotyped behaviors, interests and activities. In 2016 the Centers for Disease Control and Prevention (CDC) stated that one in 68 children are diagnosed with this disorder and the number is continuing to rise. The CDC stated that they did not know what caused ASD, but agreed there were many different factors that make a child more likely to have ASD, including environmental, biologic and genetic factors. So let’s look at a few of these factors and the medical complexities common in children with ASD. The many factors behind autism spectrum disorders Genetically, children with ASD may have a PON1 or a Methylation (MTHFR) polymorphism. PON1 is responsible for protecting humans from organophosphate pesticides. MTHFR is critical in the processing of vitamin B. Nutritionally, zinc and mineral deficiencies, copper excess and cholesterol deficiency are a few of the problems plaguing these children and adults. Food sensitivities focusing on gluten, casein found in dairy and food allergies are common. Digestive issues consist of constipation, diarrhea and inflammatory bowel disease. These folks also are prone to chronic infections such as clostridia, yeast, Lyme. They also are more susceptible to viral diseases and are prone to neuroinflammation, neurotoxicity and neurochemical problems.
Diet and inflammation So what should parents do to help their child? First, eliminate any element in the diet that might exacerbate the inflammatory process. Since approximately 88 percent of children with ASD have food allergies or sensitivities to gluten and bovine dairy, removal of these foods should make an improvement in behavior. Studies have shown that going gluten- and casein-free (GFCF) improves bowel function, skin conditions such as eczema, sleep, mood, emotional volatility, pain tolerance, self injurious behavior language, eye contact and focus. It is suggested to start with eliminating casein first for three weeks then eliminate all gluten with no infractions for at least three months to see these improvements.
Gut health and behavior Another contributor to many of the biomedical problems seen in people with ASD are gut bugs. GI pathogens can negatively influence brain function and behavior. Children with Candida yeast infections can act silly, goofy, giddy – even drunk. Sugar and carbohydrate cravings intensify; anxiety and emotional instability increases and strange behaviors such as hanging upside down, seeking pressure and masturbation are possible. Testing with an OATS test or stool testing and then treating these infections contributes to associated improvement in behaviors. Clostridia is another common gut bug that can contribute to many of the listed behaviors and needs to be identified and treated.
them medically and who is open to listen. Start the casein- and gluten-free diet immediately. Place your child on a general supplement and probiotic program. Julie Matthews has some excellent ideas at nourishinghope.com. New Beginnings Nutritionals, nbnus.com, specializes in ASD and has some helpful information and supplements. Finally, join a support network so you can brainstorm with other parents, share ideas and most of all get support for this heavy burden. Kay Jennings, BSN, MSHSA, MSN, APRN-PMH, owns and operates New Health and Aleph p.c. in Missoula. She has post graduate training in integrative functional medicine, obesity medicine and psychiatry and specializes in insomnia, mood, weight loss, fatigue and life style medicine. Jennings has compounded an all-natural sleep formula “New Sleep” that is now available for retail sale through wellnessmt.com, and is at work compounding an oxidative stress formula (to be released for retail sale in the near future). She is also a Certified HeartMath Practitioner. To learn more, call 406-7212537.
Resources and support There is no one drug, supplement or “magic bullet” therapy for autism. Find a practitioner who is not fooled by the autism label and who is open to evaluating March/April 2017 ~ living well
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Showing signs: Early help can reduce symptoms of autism JENNY VICKHAMMER for Living Well A baby turning their gaze toward their mom or dad’s voice might be the first interaction between parent and child. A little finger pointing toward something that looks interesting might be a first attempt to communicate. Both of these activities signal the development of social and communication growth in our earliest learners. With a current prevalence of one in 68, autism, or Autism Spectrum Disorder (ASD), can challenge the areas of social development and communication. Restricted interests and repetitive behaviors also are common. Signs of autism typically appear in early childhood and can sometimes be recognized in babies. According to the Center for Disease Control and Prevention, the average age of an autism diagnosis is 3 years 10 months. However, experts can establish a diagnosis as early as 18 months. Parents, family members, medical providers or other caregivers may notice that a child communicates, plays, moves or behaves differently than most children their age. It is important to seek the expertise of child development specialists or interventionists as soon as questions arise. Getting help early can greatly reduce many symptoms of autism, building on a child’s strengths and weaknesses for the foundation of a bright future. The following guidelines from the Center for Disease Control and Prevention’s Learn the Signs, Act Early, summarize early indicators of typical social, communication and motor development to look for from 2 months to 2 years. • By 2 to 4 months, a baby should start looking toward their parent and perhaps imitate some of their facial expressions. The baby may smile during an interaction or cry when the interaction stops. You might see the baby turn their head toward sounds and begin to coo or babble. They may start following movement with their eyes. Parents should express concern to their medical provider if the baby doesn’t respond to loud sounds or watch things as they move. The baby’s hands might be used to grab at a toy or put in their mouth to self-sooth. The baby should begin having head control and push down when their feet are placed on a surface. • By 6 to 9 months, a baby should begin to recognize their parent’s faces. They may turn their eyes or head when their name is used. At this stage, the baby should use both hands to explore and be interested in things that are out of reach. Areas of concern can include a lack of interest in the parent or objects 6
living well ~ March/April 2017
that are nearby. A parent might see the baby start using different sounds when they are happy or sad. The baby can use a mixture of sounds to babble like, “ba, aeh, ooh”. Parents should hear a variety of vowel and consonant sounds emerging. Babies should demonstrate skills in rolling over, remaining in a sit when placed and using both hands to explore objects. • From 12 to 18 months, a baby’s social and communication development grows rapidly. Babies might start demonstrating pretend play, like feeding a doll. They might have favorite toys, or explore new items by shaking, banging or placing them in their mouth. The baby should hand items to a parent to indicate they need help or want to play. At this age, a baby should be using gestures like “bye-bye” or pointing to communicate regularly. Parents should express concern if their baby is not using simple gestures or pointing. • In addition to gestures, a baby should be imitating and using a variety of sounds and words, and should have several words that they use every day. Babies should respond to simple requests that they hear throughout the day like “sit down” or “come here.” Parents should note if their baby loses skills that they once had. • At 2 years old, a baby develops the social and communication skills of a toddler. They should express affection toward their parent through smiles, hugs and snuggles. The toddler will play alongside other children and begin to copy others’ movements or actions. Language skills at this age expand quickly. A 2-year-old child should regularly use two to four word phrases, imitate words, point to and name everyday objects and begin to ask questions. They should be able to respond to several simple requests. If a child this age incorrectly uses everyday objects such as a hairbrush or spoon, this might be a concern. Another potential sign of a-typical development in a toddler is repetitive movements and behaviors, limited interests or rigid play with their toys. Early identification can give access to early intervention and autism therapies that change lives. Parents should be prepared to talk with their medical providers about questions or concerns in their young child’s development. Doctors and caregivers should listen to the parent’s concerns and assist them in seeking out developmental experts in their area. There is no good reason to wait and see. All children deserve the opportunity to pursue their potential. With support, every child can thrive.
About the Child Development Center
The Child Development Center (CDC) is a nonprofit agency that supports families of children with developmental delays and disabilities, including autism. The team provides coaching,
education, resources and skill development programs. It works in families’ homes and communities across western Montana, serving children from birth to high school graduation. CDC’s Evaluations & Diagnostic Services, Montana Milestones Early Intervention, Family Education & Support or Autism & Behavioral Services might be a good fit for your child. Even if you are unsure about your concerns, start by asking questions or set up an early-childhood screening at no cost to you. For more information, go to childdevcenter.org or call the Child Development Center’s Missoula headquarters at 406549-6413.
About the Child Development Center’s Autism Acceptance Campaign
April is national Autism Awareness month. The Child Development Center and Karl Tyler Auto Group challenge our community to take it a step further than awareness, and ask you to support their Autism Acceptance Campaign. Autism acceptance means support, inclusion and appreciation of the diversity of people on the autism spectrum. Support the campaign at their First Friday, April 7, event at the MSO Hub and Bicycle Hangar on Higgins and Main in downtown Missoula. There will refreshments, raffle baskets and art by children in the CDC’s autism program, as well as students from Big Sky High School on the topic of neurodiversity. More information, images and stories will be on their Facebook page throughout April: facebook.com/CDCMontana. The column was written by Jenny Vickhammer, autism and behavioral services program director for the Child Development Center (CDC). Jenny worked as an autism-endorsed family support specialist with the CDC’s Kalispell office for several years before becoming a program director in 2015. She has a master’s in education focusing on low incidence disabilities, and is pursuing certification as a Board Certified Behavior Analyst. Vickhammer lives in Florence with her husband and two children.
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Speech:
Building bridges through communication
SHANNA STACK MS, CCC – SLP, Speech Language Pathologist Autism is derived from the Greek word “autos” meaning self. Those who present with autism often appear to live in separate worlds. Our goal as speech language pathologists at Stack Speech Therapy Group is to build a bridge from our world to theirs. This bridge is built through collaboration with the child and child’s family, teachers, therapists and friends. For many, autism spectrum disorder (ASD) can be a source of question or concern. ASD is a developmental disability marked by highly varying degrees of impairment in social communication and interaction which are often accompanied by repetitive behaviors and restricted interests (ASHA, 2017). Although ASD is a condition without a known cause or cure, there are many ways to support children with this condition. Speech language pathologists are professionals specifically trained to diagnose and treat communication impairments like those experienced by people with ASD. Because of the increased prevalence of ASD, it is likely that you or someone you know may have a personal experience with someone with ASD. You may have a child of your own who is on the autism spectrum or have a family member or friend with this condition. Data published in 2014 by the Centers for Disease Control and Prevention (CDC) found ASD to have affected one in 68 children in the United States. This is an increase from one in 2,000 in the 1970s and 1980s. To date, there is not a consensus as to the cause of ASD. Several risk factors, however, have been identified. Genetic, biological and environmental elements are believed to contribute to causing ASD. Family history, parental age and gender are identifiable risk factors (CDC, 2016). ASD appears to have a genetic link and can “run in families,” be more prevalent in families with parents of advanced age, and is four and a half times more common in boys than in girls.
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living well ~ March/April 2017
Although the prevalence of ASD has risen in recent decades, there have been advances in reducing the severity of symptoms experienced by those with this disorder. By capitalizing on the principles of neuroplasticity, improved early identification tools and family-centered wrap-around models of intervention, children with ASD have a better chance now than ever to live fulfilling and connected lives. Neuroplasticity is most powerful in young children. We learn throughout our lifetime; however, our brains are best suited for learning between the ages of 0 to 3 years (Losardo, McCulloh, & Lakey, 2016). This ability to learn is called neuroplasticity: “neuro” meaning brain and “plastic” meaning moldable. Behavioral symptoms of ASD can be observed in infants and toddlers. Infants and toddlers presenting with ASD may not join their caregivers in happy moments (shared positive affect), pay attention to what others are attending to (joint attention), use eye contact, wave, clap or point (use communicative gestures). Typically developing children over the age of 1 use words to communicate. Many children with ASD may start talking later than expected, use only a few words or fail to use words at all (Losardo, McCulloh, & Lakey, 2016). Speech language pathologists are professionals specifically trained to help identify children who are experiencing communication impairments like those found in children with ASD. These specialized professionals often work with the child and child’s family, teachers and friends in their natural environments such as their homes, schools and day cares. Although each child with ASD has highly individual and diverse communication skills, most children with ASD typically work on language, social, emotional and play-skill development in therapy. These skills are the foundation of personal connection as well as academic and professional achievement. For now, ASD is not curable, but it is treatable. By identifying the symptoms of ASD early in a child’s life and seeking
professional support, many children with this developmental disorder will have a better chance of living a life full of merit, connection and dignity. At Stack Speech Therapy Group, we collaborate with several key organizations to help a child and their family achieve their goals. The Child Development Center – Missoula is a youth social services organization that partners with families to support the development of young children. Eat. Move.Grow. LLC is a family-centered occupational therapy practice specializing in improving children’s relationship with food and overall quality of life. You have the power to improve the lives of children with ASD or children who are at risk of having ASD by paying attention to early symptoms and getting professional help as soon as you recognize them. Stack Speech Therapy Group, LLC’s leader, Shanna Stack, M.S., CCC-SLP, owner, has experience providing speech therapy services in diverse clinical and community-based settings. She has worked with children and adults with developmental and acquired disabilities. Stack has a bachelor’s degree in human biological sciences and a master’s degree in speech language pathology from the University of Montana. As an anatomy and physiology and neuroanatomy and physiology for communication instructor for UM, Stack has demonstrated expertise as a speech language pathologist and instructor.
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Acceptance:
Bitterroot group brings families together
MICHELLE MCCONNAHA michelle.mcconnaha@ravallirepublic.com BAA could stand for beautiful absolute acceptance because that is what it means in the lives of the families and the children with autism. Consider the dilemma. Society often bases acceptance on correct behavior, eye contact, inside voices and obedience to parents – all the things that may be out of reach for children with autism. The social stigma can isolate families who feel they cannot attend playgroups, library activities or other kid-friendly events for fear of disrupting or upsetting families without the same needs. For Jessica Fitzpatrick and her daughter Sequoia, who has autism, it was the misunderstandings and need for social interaction that made her determined to find a better way. In November 2014, she created Bitterroot Arts for Autism, under the umbrella of Bitterroot Resource Conservation and Development, to bring families together for art projects and life experiences. Families with children with unique needs met at the public library, a local preschool and anywhere people were willing to host the group. “Bitterroot Arts for Autism brings families together to celebrate the diverse gifts of children of all abilities through creative fun to encourage a life beyond labels,” Fitzpatrick said. She explained that children with autism might need more stimulation and enjoy tactile experiences like paint on shaving cream or dye mixed with cooked spaghetti noodles. They may seek out bright lights, loud music and bumpy balls. Some children experience autism differently, they may avoid those experiences and need noise-dampening headphones, dry toys and precise play like with building blocks. At Bitterroot Arts for Autism, Fitzpatrick created experiences to provide for all kids of all ages at every point on the spectrum of autism. At BAA, each child’s uniqueness is not just tolerated and accepted but celebrated and enjoyed. The children attended art camps, farm camps and playgroups surrounded by understanding. Last year BAA started fundraising for a space to call their own and use regularly. “It all came together in October and we had our grand opening in November,” Fitzpatrick said. “Already it is expanding thanks to the parents coming in.” The BAA community center in Corvallis is called HEARTISM, which stands for Healing Arts for Autism and All Abilities. The center offers extracurricular activities and classes in a welcoming, sensory-friendly environment. It serves 20 families from south of Darby to Missoula. Classes include art, creative movement, yoga, open free play, drumming, parent stress reduction classes and movie nights. Events are open to families with special needs children and their 12
living well ~ March/April 2017
MICHELLE MCCONNAHA, Ravalli Republic
Trinity, 9, steered the kayak by herself with mentor helper, Brittany, ready to assist at the Bitterroot Arts for Autism camp, in 2015.
siblings at no cost to the families, although HEARTISM does accept, and rely on, donations. “It’s really powerful because each time that we have an activity I’ll have a parent come up and say ‘my son or daughter could not wait to come back,’ ” Fitzpatrick said. “We had an open play time of three hours and one child did not want to leave. His mom said, ‘This is so unusual I can’t get him to do much of anything but he loves it here, it just feels comfortable and so warm and accepting.’ ” Carolyn Townsend said the unique center provides her daughter, Tabatha, a place to be herself. “Tabatha has made huge gains socially by being involved with other special needs children as they don’t judge or tease her for her difficulties,” Townsend said. Colleen Dahlstrom also praised the HEARTISM center.
“It is a safe place for our daughter, Kaia, to learn and discover in her own way,” Dahlstrom said. “Here she is one of the gang. This environment of love and acceptance is what our family craves for Kaia in every public and private space.” Community volunteers have stepped up to assist with art classes. “We are grateful for the tremendous support from our local community,” Fitzpatrick said. “We have received support in the form of art supplies, kitchen items and monetary donations to assist with our operation costs.” Fitzpatrick said this summer HEARTISM has plans to create a community garden, and gardening and cooking camps to help the kids gain life skills in a fun and interactive setting. “It just keeps growing because the parents are coming in with so many ideas and we are watching it morph into exactly the niches that our kids need,” she said. “We feel that whatever is missing let’s create that and bring those opportunities in.” Fitzpatrick said BAA has teamed up with Homestead Organics to do a farm camp again this year in an expanded version that will include the commercial kitchen at HEARTISM. “We’re hoping to provide fresh fruits and vegetables for snacks and if it is an abundant garden be able to cook with some of it for the cooking camp, so we’ll set that up toward the end of summer,” she said. “We are offering life-skills training to help the kids gain independence and help fill in each little piece of the puzzle.” Last year the summer camp at Homestead Organics had teen helpers to serve as mentors and receive training from an autism specialist. The mentors also had a sensory profile detailing specific needs and preferences of each child. “It’s amazing how the support has come in and filled in,” Fitzpatrick said. “We are looking for volunteers to come in and be trained. We don’t have any funding to pay staff so it is 100 percent volunteer at this point.” The center is focused around family and the camps give the parents a break. The HEARTISM center now has a smart big-screen TV that allows children to watch videos, movies and YouTube tutorials then, go in the kitchen, and try creating different foods. Currently the center is open to people of all needs, not based on ages. “Once we start to refine it more and see what ages work better with what classes then we probably will refine it so it is age appropriate,” Fitzpatrick said. “Right now we’re just seeing who wants to be involved and just being really open. We have a big age range, it tends to be higher need children that come, but it is all over the map.” Fitzpatrick said that in addition to an oasis for the children the center has also provided a space for parents to be rejuvenated and share. “We’re finding that as their kids are in here playing we are sharing ideas and just bouncing ideas off one another,” Fitzpatrick said. “It is growing in to this magical space where we are creating what our kids need as they need it. It is huge parental support.” Fitzpatrick said HEARTISM offers a parent stressreduction class but it has not had much participation, perhaps due to parents being unable to find childcare or take time for themselves.
The center is really focused around family and designed by parents and children helping each other. “Sequoia has inspired it and is helping all these other kids,” Fitzpatrick said. “It is amazing to see them come together in this space. It is challenging for them but when they feel safe and connected to one another it bridges the gap.” Fitzpatrick hopes Bitterroot Arts for Autism and the HEARTISM center will become a model for other communities around the nation. “It’s a grassroots effort from dedicated parents, volunteers and community supporters and when it all comes together you’ve got a center and a space for these kids that have a hard time being in many other places,” she said. “These kids live everywhere and it could be customized to what those specific kids in that community need.” For more information, visit bitterrootartsforautism.com and Facebook Bitterroot Arts for Autism. The group meets two to three times each week and adds more events as funding and volunteers become available. “It is empowering for the parents, kids and community,” Fitzpatrick said. “I feel like this is divine and originated from the hearts of many. We want to give our kids purpose and meaning, that’s what we all want.” Michelle McConnaha is a reporter for the Ravalli Republic.
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School support: CHELSEA DAVIS chelsea.davis@missoulian.com When a teacher learns they’re going to have a child with autism in their class, autism specialist Sally Ann Chisholm tells them, “Lucky you.” Chisholm and Melissa Moss-Larson are Missoula County Public Schools’ two autism specialists, each with a caseload of 80 to 90 kids. Chisholm works with middle- and highschoolers, Moss-Larson with preschool through fifth grade. “We love these kids,” Chisholm said. “They’re interesting, creative, unique individuals. They can be really fun and funny.” April is National Autism Awareness Month. Autism spectrum disorder is one of the fastest-growing developmental disorders in the United States. About one in 68 children has been identified with ASD, according to the Centers for Disease Control and Prevention. That has increased every year — it’s up from one in 150 in 2000. There’s debate in the field over whether the increasing rate is due to an actual increase, more people being diagnosed or a broader definition of autism spectrum disorder. Many believe it’s some combination of these factors. MCPS falls relatively in line with the national trend, with about one in 55 students identified with autism spectrum disorder this school year, according to MCPS data. That has increased 9.5 percent since 2008. “What is interesting to me is I think a lot of the time people think about autism, they assume their thinking and reasoning is significantly impacted, but that’s not the case,” said Jenny Vickhammer, Child Development Center’s autism and behavioral services director. “Forty-four percent of individuals with the diagnosis have normal cognitive functioning, or above-average. “It’s the same with all of us. What’s the best way we can identify how we learn, cope and navigate where we live, and be a good member of our community.” For Chisholm and Moss-Larson, it’s about providing structure in school for students with autism. Vickhammer’s work centers on home- and communitybased learning. “They need more structure than a typical kid, at least in elementary and preschool,” Chisholm said. “They need that prediction and schedule throughout the day. It helps everyone in the class, not just the kid with autism.” Specialists and teachers try to present information visually. “They can get easily overloaded with a lot of auditory,” Moss-Larson said. So they break down the day into smaller steps, and plan it out. If a kid gets overwhelmed, they do whatever is necessary to “reset,” in a sense. Chisholm said she has one student who 14
living well ~ March/April 2017
MCPS provides structure for all
needs to hang out in the hallway for five minutes, then he’s ready to go back in the classroom. Another needs 15 minutes to walk down to the resource center, rest, then walk back. Today, classrooms are so individualized anyway that a student with autism doesn’t necessarily stick out, said MCPS special education coordinator Brenda Sweeney. “In any well-run classroom, everyone needs something special, autism or not,” Chisholm said. Options for children with autism conceivably could be options for any child. For example, a regular desk versus a rocking chair versus a standing desk versus a clipboard. “If you can imagine it, it probably happens,” Chisholm said. “Our job is to help them maintain in that classroom, whether they need a break, noise-canceling headphones, separate seating, whatever.” Autism is considered an “invisible diagnosis,” Vickhammer said. “There are no physical traits or attributes, and I think that for our younger kids, that’s part of why it’s become that new normal,” she said. “Nothing sticks out. It’s ‘This is what Johnny does, this is what I do, and this is how we function in a classroom or play date together.’ “It’s important that our community and society in general understand that just because it’s not something noticeable and you can’t categorize someone, doesn’t mean they don’t need support, understanding and empathy.” Vickhammer has noticed a trend in the past four or five years that she hopes continues: pediatricians and family care doctors asking questions about parent-child interaction and language development during well-child checks. The CDC has found that many children with autism are not diagnosed until they’re 4 years old. “That may not seem too late, but if you think about kids who have impacted abilities with relationships or communication, that’s a lot of ground to make up if you get a diagnosis that late,” she said. “Not to say they can’t make it up, but it’s so much easier if when people first notice signs having to do with the way a child interacts with their caregiver, eye contact, the ability to demonstrate expressive communication, that they knew where they needed to call.” Part of their work is reducing the stigma around autism, and disabilities in general. People with autism sometimes can be misunderstood, as the person with whom they’re interacting may not realize that the missed social cues are a sign of autism, not rudeness. The Child Development Center is gearing up for its second annual Autism Acceptance campaign in April. Last year, the center launched the campaign to shift the effort from awareness to inclusion. Many students with autism receive speech language pathology support at school. But the specialists pointed out an often-repeated phrase
“In any well-run classroom, everyone needs something special, autism or not.” - Sally Ann Chisholm in this field: “If you’ve met one person with autism, you’ve met one person with autism.” None are alike, though many children with autism do share some broad characteristics, such as difficulties with communication, restricted interests or repetitive behavior. “I think that having diversity in the way that people look, function and navigate life ... is the new normal for our younger kids,” Vickhammer said. Kids with autism are often matter-of-fact. A student telling Chisholm she’s old because her hair is gray could be seen as rude. But to him, he’s simply stating a fact: gray hair is a sign of age, therefore the person must be older. “It could appear like poor manners or him being defiant because he’s not making that connection,” she said. It also means they may struggle in the classroom, as they may not see the point in repeating an exercise they’ve already mastered. “There can be a lack of motivation if there’s delayed gratification,” Chisholm said. In a 2015 study of employment of people with disabilities of any kind, those with autism had the lowest employment rate. “That’s because social communication is so difficult,” Chisholm said. “There’s the rigidity of doing things a certain way, lacking flexibility, misunderstanding or being perceived as hard to be around. “In school, the objective is to get them as far down that trail as possible. All these kids have great potential.” In that vein, the Child Development Center works with people with autism as they’re exiting high school — whether they have the skills to find a job, function well at that job, make friends, get transportation around town, etc. “All those things that we take for granted, these individuals may need extra support in how to navigate that,” Vickhammer said. Chisholm and Moss-Larson recognize MCPS’ students are lucky. Smaller, rural districts often don’t have access to resources specifically for students with autism. “I had a conversation with a teacher today at recess and she said (her student with autism) is so creative and has so much to share,” Moss-Larson said one afternoon in February. “She wished she could spend the whole day with him.”
Look for the next issue of Living Well discussing Family Planning & Sexual Health Coming Thursday, May 18
Chelsea Davis is the education reporter for the Missoulian. January/February 2017 ~ living well
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A multi-step process:
Focusing on healthy eating for ‘problem feeders’ LAURA OLSONOSKI OTD, OTR/L Early childhood is typically a period when children start to explore and learn about different types of foods through play. Through smashing, smearing, pouring, sniffing, dumping and covering their bodies with food children begin to increase their comfort levels and create eating habits that last a lifetime. How a child eats before they are 6 months old has a striking impact on their immediate health and lays the groundwork for good eating habits into adulthood. Consuming a wide variety of nutritious foods in all food categories helps a child grow, develop, perform in school and feel satiated and energized throughout their day. Studies suggest approximately 20 percent of children struggle with some type of feeding and/or growth issues during the first 5 years of life. This percentage increases significantly with children with autism spectrum disorders and/or sensory processing disorder. These children are found to be even more restrictive and selective based on the type, texture, brand, temperature and color of food, placing them at a higher risk for growth and overall health concerns. A family’s socioeconomic status, availability of foods in their environment, preferences and ethnicity significantly influence the dietary variety of a child’s diet. A child with autism may experience the same environmental and socioeconomic issues, in addition to having oral motor and/or sensory difficulties making feeding even more complicated. Many of these children become “problem feeders” and have a restricted range or variety of foods, usually less than 20 different foods. Kiddos who fall into this category will refuse to eat entire categories of food based on texture or nutrition groups and almost always eat different foods at family meals. Many believe that if a child is hungry enough, they will eat. This is true for about 94 to 96 percent of the pediatric population. For the other 4 to 6 percent who have feeding problems, they will “starve” themselves before placing something in their mouth that scares them. Eating is only instinctual from birth to 3-4 months of age. We are born with primitive motor reflexes (e.g. rooting, sucking, swallowing), which helps in working toward voluntary motor control over eating. Eating becomes a learned motor behavior at approximately 6 months of age. From then on eating can become the most difficult sensory task that children with 16
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feeding problems are asked to do. Eating is the only task children do that requires simultaneous coordination of all eight of our sensory systems. Learning, development, nutrition and the environment also have to be integrated to make sure a child eats correctly. For children with autism and/or sensory regulation and defensiveness difficulties, eating can be the most uncomfortable and challenging activity in which they participate. Through the correct exploration and exposure, children have the opportunity to develop a healthy relationship with different foods. According to Dr. Kay Toomey, pediatric psychologist and president of the SOS Approach to Feeding, there is a 32-step food hierarchy that starts from tolerating food in the room and eventually leads to eating the food. This type of systematic desensitization and exposure to food focuses on increasing a child’s comfort level with food by exploring and learning about the different properties of food, such as texture, taste, smell and consistency, showing children that eating does not have to be a two-step process, but rather one with multiple steps that explore and build a positive relationship with food. If your child is a problem feeder it is important to address these feeding issues to eliminate nutritional and growth concerns. Feeding therapists versed in the SOS Approach to Feeding have specialized training in the treatment of feeding issues and are well-equipped to provide the “just right challenge” as they work to expand your child’s food repertoire. Feeding therapy places a strong focus on expanding exposure to a wide variety of foods in each food group to ensure that children have the adequate nutrient they need for optimal development. Eat.Move.Grow., LLC founder Laura Olsonoski, OTD, OTR/L is devoted to improving the quality of life for children with and without disabilities by introducing, maintaining and improving skills that allow children to participate and feel included in meaningful life activities. Olsonoski has a bachelor’s degree in psychology from the University of Montana and a doctorate in occupational therapy from Pacific University and has gained specialized skills in feeding and sensory processing disorders. Olsonoski recently published “Strawbert’s Sensational Story” a book designed to show children that eating does not have to be a scary two-step process.
TIPS FOR PROBLEM FEEDERS AND PICKY EATERS •
Include children at the table during structured family mealtimes. If the child uses a highchair, bring it close to the table.
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Discuss the taste, texture, temperature and smell of new foods during mealtimes.
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All food must remain on the child’s plate throughout the duration of the meal.
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Make sure that the child is in the proper positioning for eating. Aim for the child to have knees, ankles and hips at a 90-degree angle. A tray table should fall between the child’s belly button and breast level.
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Environmental factors play a key role a child willingness to engage with food. Make sure that there are no distractions (screens, toys, facing away from visually distracting stimuli, etc.) before sitting down to eat.
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Create a routine around eating that prepares and alerts the child that eating is about to take place. For example, ask the child to wash hands, set table and then sit down to eat.
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Help prepare the child’s body for sitting and eating by engaging them in 15-20 minutes of active sensory participation (jumping, crashing, running, etc.) before sitting down to eat.
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Do not offer rewards for eating certain foods. For example, “If you eat your peas you can have ice cream.” This creates the idea that one food is bad and the other is good. Eating should be intrinsically rewarding.
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As a child learns about a new food they need to feel safe getting the food out (spitting) before we get it down. Eating comes first and then comes manners.
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The use of utensils is not as important as the consumption of food and may even limit the child’s intake of food. The child should be encouraged to get messy and explore the food with different parts of their body. Eating comes first and then comes manners.
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Do not cater to the child’s rigidity in wanting only the same foods. Make slight changes in the presentation such as changing the noodle shape for insistent “mac-n-cheese” eaters.
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Include the child in food preparation and presentation.
By LAURA OLSONOSKI
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What autism means to me We asked three people with autism what it means to live life on the spectrum. Here are their answers, edited for length and clarity: Delfino Forrest, age 13 It’s like parkour: you find ways over, under, and around obstacles in life that people would normally go through in a forward direction. You can make your autistic life fun, if you choose to embrace it. Don’t let anyone influence you negatively. I was meant to have autism and I Iove it that way. I enjoy the way my autism makes me see and act within the world. I like to hang out with my friends, go to the park, play video games, play wall ball, etc. Autism is like other mental conditions: it is something that when taken positively leads to a fun and happy life.
Leah Grantham, age 27 What autism means to me is a complicated question, without much of a satisfying, straightforward answer. The most uncomplicated, and most honest, answer I can give is that for me, autism’s meant a certain amount of freedom, from strange social expectations that were explained to me as “just because”, from sticking to the status quo, and from being held back by the expectation that I should be ordinary. Being autistic means that a lot of things that are taken at face value as being the normal way or the right way – or the only way – to do things, are not my way of doing things, which has meant I’ve lived an unconventional, surprising and oftentimes more interesting life than average. Being curious, always asking questions, and wanting to know the “why” have taken me far. My early years of being young and autistic were often a little frightening and alienating; a common autistic comparison is being an anthropologist on a strange planet, having to learn the proper communication methods and more from scratch, but I eventually learned how valuable being an outsider and my perspectives with it could be, and embraced it. Nowadays, I’m a lot more comfortable in my own skin and with my own difference. The nice thing about being autistic is that people who love me have come to expect the unexpected, and with that comes a certain amount of adventure, of pushing boundaries, and of being able to embrace new ways of doing and thinking that I’m sure I wouldn’t have reached without my autism. 18
living well ~ March/April 2017
Araya Decker, age 16 I’m autistic so that means to play the part I have to look the part. People talk to me like I don’t understand what others are saying. I’m autistic so that means I’m weird and different. I’m 100 percent honest I speak my mind when I think those thoughts. Social anxiety we all have it, some more than others but remember I’m different so don’t sit by me at lunch. Stare with your blinded eyes at me and see that I’m autistic, I have a disability, I’m a freak. But you’re just missing out, I have a personality that shines like the morning sun. I’m kind, I’m giving, I’m important, and strong. I’m working on social skills so don’t get me wrong. I’m autistic and different with lots of passion and love to share with you.
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