Archives for April 2017

Four-year-old William reads at a second-grade level. He is very creative and loves looking at and collecting logos. Liam loves animals and is a great listener for anyone who needs a friend. Gideon loves life, constantly has a smile on his face, and has an aura of happiness that seems to draw people in.  These amazing individuals also have autism spectrum disorder (ASD).

We have touched on the fact that ASD is incredibly different for each person diagnosed, but what does this mean for the families of children with ASD, and what can others do to help support them? Family First Health, behavioral health consultant Sheila King-Miller, LCSW, states that “When working with a child with ASD, the most important thing we can do as a provider is to listen. Listen to the child through their words and their behaviors.   Listen to the parent/caregiver through their words, behaviors and interactions.” Communication and the way we communicate to a person with ASD is integral and best known by those closest to them. While some individuals with ASD have problems communicating or are even nonverbal, that does not mean they cannot communicate. To overcome these issues Rebecca Anhorn notes that it is best not to label the child as disabled, rather emphasize that they learn differently and focus on their strengths.

If you know an individual with a diagnosis of ASD the best thing to do is be supportive of the family by asking them what they need. Jennifer Beamer shares, “[We] face the constant barrage of unwanted advice from well-meaning friends and family that don’t really understand ASD…. we just want their support instead of, ‘Why haven’t you tried this or why don’t you just make him do it?’” The truth is, no one really understands all aspects of ASD, but for parents of a child with ASD they will know best what works or what will not. We hear the same word repeatedly from the families of individuals with ASD, especially those with children – advocate. When talking about her son Gideon, Rebecca Anhorn emphasizes, “Through every developmental stage, understanding the needs and challenges your child faces and being strong to advocate for them appropriately.” It is just as important for the parents and families of children with ASD to care for themselves. Being a parent of a child with ASD can be just as draining as it is energizing and Rebecca notes the importance of being patient and taking time to rejuvenate.

The best way to support a family touched by ASD is to ask what they need and to get to know the individual with ASD. At the same time, for those families that are struggling, reach out and ask for assistance, there is a wide world of people out there that are going through what you are and are willing to help. Talk to your friends, neighbors, medical providers, teachers, behavioral health specialists, social workers, and friends to get the assistance you need to support both yourself and your family member with ASD.

---

For all the parents out there that have a child with ASD, please take these words of wisdom from some amazing mothers who have been there:

“Continue to be the best positive role model for your child…Never give up and know you are most definitely not alone!” – Deirdre Ward

“You are your child’s best advocate. If you feel that something isn’t right, fight for your child.” – Jennifer Beamer

“I would tell a mom whose child is recently diagnosed that it is not an end to anything but the beginning of a different but amazing life…take each day as it comes and appreciate the little things that your child brings into your life.” – Rebecca Anhorn

“It’s not the end of the world. Your child needs you to not treat them any differently. Expect them to handle everything they physically and mentally can and they will grow up more independent than you may think.” Jennifer Johnpoll

A very special thank you to an incredible group of women Rebecca Anhorn, Jennifer Beamer, Jennifer Johnpoll, and Deirdre Ward for their input, and to their amazing children with ASD.

In the past decade, we have learned much more about autism spectrum disorder (ASD) and chances are that you know someone close to you diagnosed with the disorder. In 2014, the Centers for Disease Control and Prevention (CDC) identified that 1 in 68 children (1 in 42 boys and 1 in 189 girls) have been diagnosed with ASD. Based on the numbers that the CDC has seen over a ten-year period, prevalence has increased by approximately 6-15 percent each year, a startling increase. Family First Health physician, Dr. Marie Kellett notes that she has also seen an increase in her work. “I am not sure if we are recognizing it more or if the prevalence has really jumped that much. In reality, it is probably a mixture of both. The wonderful news is that the sooner we diagnosis a child and get the proper support and guidance many of these children can grow socially, academically and function very well.”

April is National Autism Spectrum Disorder Month and a chance to explore the disorder, openly talk about the challenges that families face, and decrease the stigma around ASD. A developmental disability, ASD is characterized by a difficulty in communication and social interactions, sensory sensitivities, and behavior issues. Although these are some of the characteristics that “define” ASD, the behaviors, treatment and outcomes are extremely different for each person. You may find that a person with ASD will have, what some may consider, unusual behaviors, and because of this, they face certain stigmas. Deirdre Ward notes, “Families with kids on the spectrum each have their own unique struggles on top of the norm. We have to deal with other kids or people judging us and our children due to the way they speak/act/react to certain social situations, school, friends (or lack thereof).” It can be exceptionally difficult for the person with ASD; for Deirdre’s son Liam, he was not invited to birthday parties when he was in elementary school because he was looked at differently. For Rebecca Anhorn, bullying is a very real concern for her young son Gideon. “I am aware of how bullying is so prevalent in schools now and concerned about how school will be for each year for him.”

While individuals with autism spectrum disorder face being treated differently, they also thrive when they can focus on something of interest. Jazz pianist, Matt Savage, diagnosed with ASD when he was three years old, is an incredible musical prodigy who taught himself how to play the piano. Actress Darryl Hannah, also diagnosed as a child, has gone on to star in many films. The Autism Society shared that while autism is treatable; it is not something that can be “outgrown”, although studies show that early diagnosis leads to improved outcomes.

The behaviors, road to diagnosis, treatment, and outcomes are different for each person with autism spectrum disorder. For four-year-old William, it is a fight to get the services that he needs. His mom, Jennifer, states “A lot of times we are treated like we are overreacting and that they will outgrow these behaviors. The state encourages early intervention, but when you go to get those services, they will give you as little as possible.” She shares that they are incredibly lucky to have good insurance that pays for those intensive services, which would normally cost $30,000 a month; otherwise, they would only be eligible for one hour a week for services. Deirdre notes that sometimes you need to fight to make people listen to you, especially in the education system where an individualized education plan (IEP) is important to help a child with ASD to focus on goals. “Be a thorn in their side until they listen and help your child, if things aren’t being done to the ‘T’ of said IEP, or you are unhappy with how things are done, call a meeting. It is our child’s right to get the best education the state has, never give up.”

Other families have run into similar issues with state and educational system assistance and resort to doing their own therapies and treatments at home. Behavioral therapies play a large role but some children respond better to different treatments, such as animal-assisted therapies. The idea is that there are many different options and that it takes work to find the treatments that will work for the individual. Create a care team by working closely with your medical provider, therapists, and friends and family to find the right ways to address autism spectrum disorder for your loved one.

---

A very special thank you to an incredible group of women: Rebecca Anhorn, Jennifer Beamer, and Deirdre Ward, for their input, and to their amazing children with ASD.