Mother and son find autism community and piece together support

They say if you’ve met one person with autism, you’ve met one person with autism. Each case comes with a varying set of deficits that impairs a person’s ability to communicate or interact with others. The real key to helping someone manage the symptoms of autism spectrum disorder is a customized treatment approach that involves: addressing any physical health issues; changing behavior to help a child cope with obsessive compulsive characteristics and sensory issues; and customizing an education plan that evolves to fit the specific needs of each child.

There is no cure for ASD. The goals often become education, behavior management and providing quality of life to keeping families whole. It requires an individualized master plan to make it all happen. The lack of time and money it takes to adequately inform and guide parents in that process is what is really preventing many of the 3.5 million people living with ASD in the United States from getting the adequate help they need.

My experience with ASD comes from my 9-year-old son Jackson, who was diagnosed at 24 months. Jackson met his milestones and began using words like “Mommy,” “Daddy” and “Sponge Bob,” but after we put him on cow’s milk at 12 months, we began to notice changes. He began to cry as if he were in pain and often vomited before bedtime. He stopped using his words, and he would sit in the corner and stare at sunbeams streaming through the windows. He stopped gesturing at all. In fact, when I tried to get him to point to objects in a book, he would grab my finger and use it to point. Instead of asking for milk, he would take my hand and lead me to the refrigerator. When we called his name or said, “Look at me,” he would ignore us. Getting him to go to sleep at night became a three-hour struggle, with me lying next to him while he tossed and turned, sometimes accidentally butting me in the head while I cried myself to sleep.

Perhaps the most heartbreaking of all was that he would not kiss me. In fact, if you wanted to hug him he would back up into you in a backward hug. He started developing even more bizarre sensory problems, such as tearing paper out of books and eating it, and smearing his own feces on walls and toys. He also self-selected his food, only wanting to eat bread, fries and milk. We stopped taking him outside because he would bolt and run away or plunge his hands into ant hills. A hallmark of his behavior was how compulsive he was about certain things and how obsessive he could be about getting them.

When I asked our pediatrician about Jackson’s loss of language, he referred us to a pediatric neurologist at LSUHSC, but there was a 10-month wait. (In fact, we ultimately decided to drive to Monroe and see a private pediatric neurologist, who got us in six months sooner). While we helplessly waited, I went to autismspeaks. org and started reading. When I clicked on the videos of children with ASD doing activities alongside videos of children not on the spectrum performing the same activities, I had my answer. When I was watching the ASD children, it was like watching Jackson.

I also came across links to pages on special diets such as gluten-free, casein-free. I also found a link to a book by Dr. Kenneth Bock that changed our lives: “Healing the New Childhood Epidemics: Autism, ADHD, Asthma and Allergies.” With no other options and Jackson vomiting more and more, I decided to remove milk from Jackson’s diet. The vomiting stopped and within two days, Jackson was making eye contact with us. On the third day, he began coming up to me and kissing me. To say we were ecstatic is an understatement. All day long, Jackson would compulsively come up to me and grab my face and kiss me, and I would yell out to my husband, Stuart, “Kiss number 17!” Each time we would all dissolve into happy tears. We removed wheat from his diet that very same day.

By the Numbers

April is Autism Awareness month and each April 2, Autism Speaks (www.autismspeaks.org) celebrates “Light It Up Blue” in commemoration of the United Nations-sanctioned World Autism Awareness Day.

It is crucial that people accept the numbers of those being diagnosed with ASD are growing at a terrifying rate. According to the Centers for Prevention and Disease Control’s most recent report in 2014 that is tracking ASD, about 1 in 68 children in the United States has ASD, but it is five times more prevalent in boys where the rate is 1 in 42.

If this isn’t cause enough for concern, consider this: Autism services cost U.S. citizens $236 to 262 billion annually, a majority of which is for adult services at $175 to 196 billion annually. (An estimate from Autismsociety.org concludes the annual cost in 10 years will be $200 to 400 billion.) However, Autism Society claims the cost of lifelong care can be reduced by two-thirds with early diagnosis and intervention.

Symptoms such as those exhibited by Jackson are often apparent between 18 to 24 months and become more defined between 2 to 6 years of age. The diagnosis process was reclassified last year to include the classic five disorders of autism, Aspergers, Rett Syndrome, Childhood Disintegrative Disorder and PDD-NOS all under the umbrella of autism spectrum disorder. This new classification is encouraging because it recognizes the potential for movement and improvement along the spectrum.

Pediatric neurologists, pediatric psychologists, developmental pediatricians and speech/language pathologists can evaluate for ASD, but sadly, Shreveport- Bossier City doesn’t currently have a developmental pediatrician. There are often waiting lists for existing services, so parents with the means often travel out of town and even out of state for services.

Local Resources

Michelle Yetman is a clinical psychologist who oversees the diagnosis of children with developmental delays at LSUHSC School of Allied Health and Children’s Center. Yetman’s department does not yet provide treatment to the area because they are overwhelmed with providing diagnoses.

“One in 68 [children],” Yetman said. “This should alarm us all. Our focus now is on early diagnosis and we are it for the northern part of the state. Once we diagnose, we can hook them up with community resources. Early identification makes a world of difference with outcome.”

Part of the problem with getting an early diagnosis is a lack of knowledge about ASD, even in the medical community. “One of the ways we’re changing that is that every third-year medical student here, even if they don’t work with kids, has to rotate through our department,” Yetman said.

ASD manifests differently in each person and can seem like a wide range of behavior from one person to the next. “But it’s all the same behavior,” Yetman said. “Think of a triangle with three points. [First is] communication, where the low end is non-verbal and no eye contact, but someone with Aspergers can talk but still has problems with communication. They don’t understand jokes, figures of speech or non-verbal communication such as body language. The next point in the triangle is social, from having no interest in other kids to Aspergers, where they may very much want friends but not know how to make them because they can be awkward. The third point on the triangle is restricted or stereotype interest, where on the low end you might have classically autistic features, like the toe walking or the hand flapping, to the high end, where you have that restricted range of interest, where he or she knows everything about Botany or everything about ‘Star Wars.’ It is very rigid and narrow in focus. So regardless of where you fall within the spectrum, we still see that three-point deficit.”

One of the problems that delays diagnosis is a gap that occurs between the first notice of symptoms and the time of referral. “When you ask moms, ‘When did you first suspect something was wrong?’ you usually find it is six months to a year between the point where the mom approaches the pediatrician and when they actually get help,” Yetman explained.

Yetman said they are pushing for early screening. “We have a contract with Early Steps, which is the one-to-three year provider. All our pediatricians working at the children’s clinic use the screening check list at the 18-month well-baby checkups. This is in compliance with national standards. If those kids fail their screeners, they should be referred to someone somewhere like the [LSUHSC] Children’s Center, where they get a comprehensive evaluation.”

When asked about other common health problems associated with ASD, such as digestive problems, Yetman said, “What we see is a lot of chronic constipation. It’s not because we see it so consistently across the board. It is characterized by their restricted diet. By that I mean the mom can tell me literally the six things the child eats. It’s typically a carbohydrate-based diet, grain and dairy, and incredibly rigid. A child with ASD might actually starve himself to death rather than eat an undesirable food item.”

When asked about possible causes of ASD, Yetman said there is a lot of research looking at a genetic and environmental component. “A study I just read about is called the Tooth Fairy Study where they are collecting baby teeth after they fall out to determine what toxins these children were exposed to. Pesticides, toxins and pollutants all lay down in the enamel. They are comparing teeth from ASD children to non- ASD children,” Yetman said. “And we now know with the prenatal studies that women who have been exposed to a high level of pollutants when they are pregnant do have an increased risk of having a child with autism.”

Effective treatments recommended by Yetman and her department include speech therapy, occupational therapy and applied behavioral analysis. “You have to understand what is driving the behaviors,” Yetman said. “Sensory integration therapy, ABA and social skills training can all help with sensory issues.” ‘Anacdotal Observation’ I had the opportunity to sit down with Diana Townsend, whose 3-year-old son Blayne was recently diagnosed with ASD at LSUHSC. It is evident how much time Townsend has already spent trying to help Blayne.

“He has verbal delays,” she said. “If you point to something, he can tell you what it is but he can’t make a sentence. We work with him every chance we get.”

Blayne seemed like any other happy developing child until he was 12-monthsold. “He met every milestone,” Townsend said. “He said, ‘Mama,’ he had great eye contact – until about 12 months. I thought he had hearing problems. I’d talk to him and he’d look straight through me. Or I’d come home and yell, ‘Where’s Mama’s baby?’ and he wouldn’t meet me at the door like he used to.”

The day-to-day drain that destroys quality of life and the goals parents have for their ASD children is already present in the Townsend family. “We can’t let him play like other kids, not even down the hall. Blayne will be out the door. He gets into stuff outside and he loves water. If he sees some kind of water outside, that’s where he’s going to be. And he compulsively tears up things like tissue or Play Doh, and the little pieces get all over the house.”

I wasn’t surprised to hear that Blayne also has a milk intolerance. “The daycare kept calling me and telling me he was throwing up on the playground. At first, I thought it was a stomach virus, but none of the rest of us would get sick. Then I noticed that every time I reintroduced milk, he would throw it up. So I put him on almond milk and it stopped. Later, a [gastrointestinal] doctor confirmed milk protein enteropathy.”

This parent detective work, referred to by many doctors we encounter as “anecdotal observation,” is another common thread found in ASD households. We talk to other parents and find out what they’ve tried and a part of the criteria, but we ask about it research topics ourselves, trying whatever seems logical and sticking with the things that give us results. “We are also off of gluten,” Townsend said. “It has helped tremendously with his belly, and we saw a definite improvement with eye contact.”

Parents aren’t the only ones on the gluten-free, casein-free diet bandwagon. Integrative doctors have been looking at the growing body of research available on diet, the digestive system and inflammation, and how those might affect development in children for some time now.

A Healthy Gut

Dr. Betsy Hendricks is an integrative doctor practicing in Conway, Ark. “Integrative medicine uses a different model,” Hendricks said. “Instead of arriving at a diagnosis and selecting a medication or other therapy, we look at what appears to have made the individual sick and how to address that from a biochemical perspective. It is much more time intensive, and the patient and family often have to be very active participants.”

When asked about the actual cause of ASD, Hendricks said, “The more I read the research, the more I see that evidence is pointing to inflammation, specifically neuroinflammation. We are also seeing an increase in toxic burden, much of which is passed from mother to child in utero and then through breast feeding.”

“Then we see the resources of the child being engaged with trying to manage this toxic load,” Hendricks said, “and thereby having a reduced ability to handle inflammation. Nutrient deficiencies related to both the standard American diet and the child’s decreased ability to absorb nutrients due to a damaged GI tract and imbalanced microbiome further complicate things. Finally, there is a shift in the immune system toward more allergies and auto-immune disease, possibly secondary to toxins and a decrease in available glutathione.”

When Hendricks treats a patient, she has the patient or parents complete a thorough health history, then orders thorough lab work, including urine, stool and blood samples, to evaluate what is going on in that patient’s body. Diet changes and probiotic therapy are often the next step.

“We have to begin to do everything we can to reduce inflammation and help with repair,” she said. “So, the first thing we often do is to change the diet to remove foods that are the most inflammatory. This is the basic reason for the gluten-free, casein-free diet. We also want to remove toxins from the child’s environment while we replace needed nutrients and use nutrient-dense foods to help with repair.”

This concept might seem somewhat new to Western medicine, but doctors in the East have long referred to the gut as “the second brain.” A healthy gut full of good flora allows the body to absorb and use nutrients in the correct way, which is crucial in the early childhood development years. A healthy gut in a child also helps build an immune system that can better handle the toxins and allergens he or she encounters. An unhealthy gut struggles to absorb and use vitamins even if they are ingested.

The American Academy of Pediatric Allergy and Immunology does not formally recognize the type of testing that integrative doctors are doing all over the world, including in the United States, even though parents are observing with their own eyes healthier children. Hendricks said, “I think that is because IgE mediated reactions are the only recognized type of reaction. I also test for IgG mediated food sensitivities. The IgG reactions are not true allergies, but still give us important information about what the immune system is reacting to.”

It is these food sensitivity “reactions” that have the potential to make life miserable and put the brakes on healthy development, limiting the potential for quality of life. I have learned reactions like Jackson throwing up from eating a food, his eyes swelling shut from being exposed to a strong scent, or his body breaking out in a perfect T-shirt-shaped rash due to his shirt being laundered in certain detergents, are reactions considered an allergy in mainstream medicine. When he eats wheat or gluten, it is like a narcotic to him because he has a toxic reaction. Yet, when I explain these things to mainstream doctors, I see them glaze over. They assume we are trying to “cure” ASD, when we are merely trying to manage these very real medical symptoms.

A Life-long Process

Hendricks maintains there is ever growing research that supports this type of treatment and its help to patients and she covers that research in her book “Zero Point, Where Worlds Collide and Autism is Born.”

“Recovery is a life-long process,” she said. While many parents are taking the integrative approach into their own hands, many of them are combining it with therapy, as well. One of the most effective approaches is applied behavioral analysis, which systematically applies interventions to modify behavior. It is extremely helpful with language development, sensory issues, social behavior, toilet training and food issues. It was in ABA therapy where Jackson finally started talking and it was with ABA principles that we finally got him toilet trained, both of which occurred at 5-yearsold. The good news is ABA improves the lives of those with ASD and their families, and it is covered under most private insurance as well as Medicaid. The bad news is that to be effective, significant hours per week have to be devoted to it in the therapy setting and the home, and there is a shortage of ABA therapists in North Louisiana. There are only two private therapy centers in Shreveport-Bossier City that offer ABA, as well as one tuition private school program at The Educational Center for Autism. Some parents make the decision to get training themselves so they can help their own child.

In College with Autism

There was no ABA to be found in Louisiana when Jeff and Susan Abney found out their son Cooper was autistic 15 years ago. Jeff said he and Susan were hitting a level of despair about how to reach Cooper.

“He could only be described as miserable,” he said. “We had to have an action plan for every single act that involved him outside our home,” he said, “whether it meant how to take him into a store with us to calming him down when the doorbell rang. Social settings were terrifying for him. Going to family events or friends’ homes became impossible.”

Perhaps the worst part was that Cooper wouldn’t even look at his parents. Meanwhile Jeff did the only thing he could do.

“I started researching potential diagnoses in the bookstore and the early online communities, and ABA immediately came up as a possibility,” he said. “It was the only strategy, with thorough, peer-reviewed research behind it.”

About eight months into the ABA program, they saw the first major sign that the hours of verbalization strategies they had done were starting to pay off.

“Cooper was in his bedroom playing by himself,” Jeff said, “and we heard him yell, ‘Mommy, come here, I need you!’ We both thought we were hearing things when he said it again, and then of course, we both got weepy.”

That was the turning point for Jeff and Susan, and from then on, they saw language acquisition, including sentences. “But it all started with very basic, very discrete goals,” Jeff said. “For example, matching. Everything in ABA is a stepwise process, and skills are modified and made more complex as they are mastered.”

The Abneys were also pioneers in the battle for an equal and appropriate public education for Cooper in Caddo Parish. What the Abneys have produced is a smart but genuinely nice 19-yearold man who now lives on his own and studies geology at Mercyhurst University in Pennsylvania. “I like Mercyhurst because the classes are small enough that all the teachers know you as an individual,” Cooper said. “But the school is big enough to have many majors, including the archaeology program that my geology major is a part of.”

To hear this formerly nonverbal ASD child describe how he has breezed right through the first-year-at-college transition moves me beyond words.

“While the first semester was stressful due to settling in so far away from home, and a particularly tough pre-calc teacher, I’ve found quite a few friends to do things with when we aren’t busy. I’ve also been excited since I learned that my paleontology class will take field trips in the near future for fossil digs.”

Also, there are perks to being at a university that houses and educates so many brilliant spectrum minds. “The movie club that I’m in will be among the first people in the country to see ‘The Avengers 2,’” Cooper said.

I asked Cooper if he had any advice for parents of young children on the spectrum and he said, “Be patient with them and try to get treatment as soon as you can. It might make all the difference. Also, try to understand the world from the perspective of your child.”

Another significant therapy option, which is often combined with ABA, is occupational therapy. Suzanne McMillian has been a pediatric occupational therapist for 22 years. “Children that do not have ASD develop and learn through interaction, playfulness and an understanding of social and emotional exchange with their parents,” she said. “Children with ASD do this also, but often in very different ways.”

McMillian likes to figure out what motivates the child at home and then applies that to the therapy environment. “For example, with a picky eater,” she said, “does he or she like Legos, tactile toys or video games? We use what the child is interested in to motivate trying new foods.”

Many times the OT center becomes the place for emotional support for families, as well. “ASD is such a big diagnosis,” McMillian said. “I want people to be aware of how isolated parents may feel. It’s also important to understand that just because a child doesn’t speak, doesn’t mean they have cognitive delays or that their receptive language is not typical. These kids are often brilliant, funny, mischievous, sarcastic, lonely, afraid and affectionate.”

Both the Abneys and McMillian agree that parents should not depend on the school to automatically meet the needs of a child with ASD. “Remember that the parent is the child’s voice and they should set up their educational experience to benefit their child in the best possible ways,” McMillian said.

In the School Setting

Having a well-crafted IEP allows students to receive customized services from teachers, paraprofessionals, occupational therapists, speech therapists, physical therapists and adaptive physical education teachers. It can sometimes allow pre-schoolers to receive special services such as enrollment at 3-to 5-years-old at Caddo Parish’s all-early childhood education center 81st Street ECE School, which provides a solid start for children who need something more before enrolling in elementary school.

I recently spoke with one Caddo Parish School System teacher who will remain anonymous. The teacher I spoke with (who I’ll refer to as Teacher Doe) is a well-respected, 20-year veteran of autism education.

The primary contrast between the past 20 years and now is in the amount of freedom a teacher has to customize strategies that can evolve for each child within the classroom. “We’ve seen a shift to where we are incorporating more strategies,” Teacher Doe said. “Then, we were given classroom set-up instructions and a rigid, structured routine based on the TEACCH program. That’s really all we had, but now we are allowed to use a combination of strategies, a piece of TEACCH and a piece of ABA, which is way more successful than just a single approach. It’s encouraging because it works.”

Elementary education is definitely improving. The still-alarming aspect is that as an ASD child ages, his or her education options narrow. For example, the only two high schools that accept “profoundly delayed” ASD students in Caddo Parish Schools are Huntington High School and Fair Park College Prep.

Teacher Doe would also like to see more community resources for education. “We need a restaurant that is accepting that we can go into before their rush-hour lunch so that we can teach some social skills and sit down at the table. Parents tell us they can’t take their children to the dentist or to get a haircut. If we had a barber who was willing to help, it would be great. Swim lessons are also important because these kids seem to be obsessed with water.”

Teacher Doe believes her students are coming in at a different level than they were 20 years ago, requiring less instructional time or training. “I see a difference,” she said. “Kids were coming at 5 who weren’t potty trained or couldn’t do other tasks. That consumes a lot of your time and it’s valuable instruction time that you’re losing. If they get the proper early childhood training they need, it makes all the difference on how far they can progress overall.”

That’s where the early diagnosis work that Yetman does comes full circle and you can see all the little pieces around the community beginning to fall into place. “When I started out,” Yetman said, “I was getting 5- and 6-year-olds. Now all I get are 1- and 2-year-olds. If we get a 5-year-old now, we’re like, who dropped the ball? Fifty percent of our recommendations are going to be school-based.”

Common Goals

When you take a look from the perspective of each branch of ASD treatment, from medicine (both mainstream and integrative) to psychology to therapy to education, you begin to discover that we are all working on some of the same things, but we’re working our way there from so many different directions that don’t always cross paths. The towns and states where all the various entities have come together for some honest dialogue and planning are where you will find the most effective ASD programs and services, along with the happiest and healthiest families.

“You have to be an advocate for your own child and understand more about the diagnosis and treatment options out there than the practitioners and educators you’re working with,” Abney said. “Pediatricians and psychologists now have a much better understanding of the spectrum and much more experience with diagnosis, but even now, people approach treatment options with their own attitudes and biases.”

There is a lot to ask of parents who never chose this path – to be able to navigate a maze of services with blinders on at the beginning of their journey. Parents and grandparents have told me more than once that they would climb any mountain to help someone they love with ASD, but I think what they envision is climbing a mountain to get the magic pill they need to cure ASD. There is no pill that will cure ASD, but you can help someone on the spectrum to achieve quality of life. You just have to climb that mountain every single day.