Guest blogger: Julie Hornok
Two weeks after my daughter, Lizzie’s, official autism diagnosis, I hit a wall. I woke up each morning with bloodshot eyes from late night hours spent on the internet. Researching was my full-time job now, although the knowledge I gained about Lizzie’s condition was a double-edged sword. I knew about hundreds of treatments, but having so many options was overwhelming. I didn’t know where to begin. What if I chose the wrong treatments and wasted precious time and money? Those decisions were on a permanent loop in my daytime thoughts and when I finally closed my eyes at night, they haunted my dreams.
Now thirteen years later, my daughter is actively engaged in our world, mainstreamed in school, has friends, is on the cheerleading squad, had her first paid summertime job, and volunteers helping preschoolers at church on Sundays. I am often asked to share what we did to help her progress. As a young mom, I remember feeling the need for a proven plan, so I could cope with what was happening to our family. I was so desperate I even stalked a little girl with autism until I was able to find and question her mother!
The truth is what I did with my daughter worked for only my daughter. Every child’s treatment plan should be different; combining expert advice and staying in-tune with parent intuition. Many books are available about a child starting a specific treatment resulting in a dramatic leap of progress, but that is not the norm. These books have nuggets of information that can be learned and applied, but the treatment must be individualized. Most kids do progress, some more than others, but it is a long, consistent, methodical process with small steps of progress that eventually add up to a child who is able to function better than before. Forming a “marathon, not a sprint” mindset to autism treatment will enable clearer thinking while making these important decisions.
Even though every child is different, there is a firm foundation of proven autism basics that will be beneficial to establish before adding more complicated/less common treatments. When my daughter was diagnosed, I dreamt of someone holding my hand as we prioritized the autism treatment options. Here is what I wish that someone would have told me:
Start with addressing overall health. Some people can eat junk food, lay on the couch and only sleep four hours a night while still functioning well and living to be a hundred years old. But our kids with autism have been described as “canaries in the coal mine.” They are more sensitive to unhealthy living, and we need to help them take care of their bodies.
“A healthy diet of colorful whole foods, the avoidance of too many refined carbohydrates and refined sugars, and complete avoidance of artificial ingredients such as High Fructose Corn Syrup and food dyes can add to the quality of not only our physical health, but also the health of our brains,” explains nutritionist, Laura Kopec, NDT, MHNE, MA, CNC.
If we are pouring chemicals and junk food into our children’s bodies, the body’s natural balance is thrown off making it difficult to heal. Diet is a tough thing to change, especially if your child is a problem eater. Feeding therapy is available for those who have texture issues, sensitive gag reflex and a limited diet of unhealthy foods.
“Fitness is play. All children deserve to play,” says Josh Harris, CPT, Bohemian Fitness.
Find something your child enjoys and encourage exercise every day. Sensory gymnastics, swimming, running, rock wall climbing, trampoline jumping, and yoga are a few options. Get creative using your child’s interests. If he likes Minecraft, build an obstacle course using this interest. When my daughter showed interest in yoga, I hired an instructor to come to our home. When there was no good option for sensory gymnastics, I worked with a local gym to create a class. Reward heavily for your child’s participation. The more exercise the body receives, the more it craves and the easier it will be to get your child to participate.
“Sleep is a critical component of health in children and should be considered a foundation for preventative health and wellness. Studies have shown reduction in behavioral problems during the daytime with improved sleep quality at night,” explains Dr. Deborah Bain, MD.
Sleep is necessary for the body and mind to work properly. The first step is providing an environment conducive to sleep. Consistent bedtime, a calming bedtime routine, no screen time an hour before bed, a dark and quiet room, remove sugar and caffeine from the diet, and plenty of exercise during the day. If these are not enough, there may be health issues preventing your child from sleeping that need to be addressed by a healthcare provider.
Staying consistent with the “staple” therapies that have been proven to help children with autism is key to our children’s overall progress. Often when we try new autism treatments, we are tempted to take a break from these staples. Continuing these therapies, without a gap, while adding in new treatments will not only allow for maximum growth, but it will enable you to judge the effectiveness of the other treatment. Any other autism treatment should yield measurable growth in these staple therapies.
Behavioral Therapy sets a tone of compliance which is necessary for learning the skills needed to function in our world. ABA (Applied Behavior Analysis) is the most researched and most common form of behavioral therapy. “ABA is an evidence based intervention for kids on the autism spectrum that is proven to have a positive impact on the lives of most autistic children,” explains Archana Dhurka, M.S, BCBA, Founder of All Behaviors Considered.
Some other behavioral therapies that address behavior and social deficits are Floortime, PRT (Pivotal Response Training), Social Skills Groups, and RDI (Relationship Development Intervention).
Most children with autism have sensory integration needs. Think of sensory needs as an itch that needs to be scratched. The child’s mind cannot easily think of anything else until these needs are met.
“Sensory integration allows the brain to make sense of environmental stimuli and produce an appropriate response, behaviorally, emotionally, and motorically,” shares Neneitte Tabani, OTR, Clinical Director of Progressive Pediatric Therapy.
The occupational therapist will also address gross and fine motor skills. If your child has issues with functional movement or poor balance, physical therapy may also be needed.
Feeding issues can be addressed in a less expensive way by adding on fifteen minutes of “food time” at the end of each session.
“Through speech therapy, individuals with ASD are taught critical communication skills such as joint attention, perspective taking, and social engagement, all of which further overall outcomes for communicative success during social interactions,” says owner of Speech TX, Julie Liberman, M.A., CCC-SLP.
Speech therapy is available in a wide variety of styles. Be sure the speech therapist’s specialty and experience match your goals for your child. Never assume…always ask specific questions to make sure the therapist has a history of helping children similar to yours progress.
OTHER AUTISM TREATMENTS
Medical treatments, special diets, medications, hippotherapy, aqua therapy, massage therapy, craniosacral therapy, homeopathy, biofeedback, acupuncture, vision therapy, HBOT are a few of the options.
Just because these aren’t proven with a double blind study, doesn’t mean they don’t work. I had a case study of one in my home, and I feel strongly several of these were necessary for my daughter to progress in her journey. While staying consistent with overall health and staple therapies, I began to try many of these “unproven” options slowly over time. These seem to be more hit or miss depending on the individual make-up of the child, so inquire about testing that can help narrow the options. Here are suggestions to help wade through these treatments:
1. Always consult a healthcare provider before trying a new treatment. The only positive in the rise in autism is there are more brilliant minds dedicating themselves to helping our children. Consult other autism parents in your area to find the best local and national providers to walk you through this complicated web of treatments.
2. The only way to truly know if these therapies work is to try new treatments one by one. Inquire how long to give the treatment before seeing progress. Timing is important because with some therapies, such as biofeedback, you may see progress right away, but often others, like diet changes, can take up to six months. Also, many treatments have setbacks before progress is seen. Take the time to fully research and consult your providers and other parents, so you know what to expect. Once you fully understand the timeline and possible setbacks, continue if there is progress. If not, drop it and move on to the next one.
3. Record data on each treatment…be specific. Record behavior, language, social interaction and overall health. Record what your child doesn’t do that he used to and what he does do that he didn’t used to. The more details, the better. Don’t share with therapists the new treatments you are trying. If there is a positive or negative change in your child, this enables you to receive authentic feedback.
4. Add a new treatment only as you can afford it. These treatments are usually not covered by insurance and can be quite expensive. Remember the “marathon” mindset helps make decisions more clearly. Grants are available from the state, local autism associations and even employers.
Autism will continue to bring ups and downs, progress and setbacks, joy, and even times of sadness and desperation. Through it all, remember there are parents who have walked before you willing to share their knowledge. Never hesitate to ask for help because what you learn may help not only you, but other parents a few steps behind you in this journey.
Julie Hornok is an author, speaker, event planner and advocate for autism. Her writing has appeared in Parenting Special Needs Magazine, Autism Parenting Magazine, AutismSpot, Thrive Magazine, Literary Mama, Chicken Soup for the Soul series and many more. Her first book, United in Autism: Finding Strength Inside the Spectrum, will be released in October 2018.