How Uplifting the Voices of Kinship Help to Move from Awareness to Advocacy and Acceptance for Children with Autism Spectrum Disorder
In 2021, the Centers for Disease Control and Prevention (CDC) reported that approximately one in 44 children in the U.S. is diagnosed with an autism spectrum disorder (ASD), according to Autism Speaks. While there is minimal research conducted specifically about children with ASD and their involvement in the child welfare system, increased efforts to provide parenting education as well as access to community-based resources and health and disability-related services specifically for families of children with ASD may prevent initial and subsequent child protection involvement. Further, understanding the varying dynamics of ASD and providing parents and kinship caregivers safe spaces to openly discuss their challenges can help equip them to advocate on behalf of their children or children in their care with ASD.
ASD is a developmental disability that can affect social communication and behavioral development. With awareness, acceptance, and the appropriate support, children with ASD can reach their incredible potential. Early identification is important so children and families can attain the services and support they need as soon as possible.
Raychel Rogan knows this all too well. Her son, Bryce (8), was diagnosed with ASD around three years old.
“I utilized early intervention programs in daycare and in pre-school. He is in an Autistic Support classroom at his elementary school. The teachers and specialists have been wonderful, and very supportive to both Bryce and our family.”
Raychel’s continued advocacy for Bryce has helped his older sister become a powerful advocate for him as well. She loves to be his helper and his protector, helping him with his therapies and teaching him how to socialize with other children.
For Raychel, having a community of people who are understanding, patient, and simply kind is what encourages Bryce’s growth, and they have found this support in their family, friends, and church.
Image of Bryce provided by Raychel Rogan
We advocate for him to be treated like any other child. His family will always be his voice whenever needed.Raychel Rogan
Raychel’s primary focus as a parent is highlighting Bryce’s capabilities to his peers and others. “I think a challenge of being a parent of a child with autism is explaining his needs or preferences to others.” She notes that she must have patience and take the opportunity to educate others whenever possible, sharing that most people have responded positively to this education.
When teaching youth about ASD, Raychel uses age-appropriate language. “I may say that Bryce loves dinosaurs, robots, and ghostbusters and ask the child what they like. I tell them that Bryce doesn’t like loud noises or to be touched, but it is okay to give him hi-fives.” For Raychel, keeping language simple when using technical terms with youth helps them learn more about Bryce.
I encourage kids to ask questions and praise children for being kind and patient with Bryce. I encourage parents to explain autism with grace so that when your child comes across someone who is different from them, they treat them with kindness and respect, instead of bullying behaviors.Raychel Rogan
Kinship Care as a Unique Piece of the Puzzle: Engaging Children with ASD in Out-of-Home Care
Although routine and familiarity are important for all children, for children on the autism spectrum, this becomes even more important. For children in out-of-home care specifically, new forms of structure and the unknowns that impact predictability can greatly impact their emotional and physical well-being.
ASCI’s Director II of In-Home Clinical Services, Shielah DeBlanc, MS, NCC, LPC, CCTP explains, “Autism is a complex diagnosis that impacts development which is often marked by communication challenges, social impairment, and behavior repetition. Autism is also known as a spectrum disorder and is unique because not all individuals present with the same symptoms thus, there is a spectrum of behaviors and indicators that signal the need for assessment and diagnosis. From the kinship perspective we must approach ASD with empathy, resilience, and patience as fostering a child with autism can greatly differ than parenting a biological child who is still in their family of origin.”
While some foster parents are trained in engaging children on the autism spectrum, kinship caregivers typically already have routines and familiarities with the child that can’t be replicated by someone unknown to them. Providing the additional information, education and supports to kinship caregivers is essential for them to meet any challenges they may face that result due to a removal.
“For caregivers who are fostering a child with autism it is imperative to understand how trauma, plays a role in the severity of behaviors displayed by the child,” DeBlanc notes. “Unexpected or sudden change of environment will often times destabilize the child and exacerbate their emotional display usually through self-stimulating behaviors (Stimming). Ways to help your child who is on the spectrum is through designated sensory space in the home, reestablishing the child’s routine, utilizing visual reminders, timers, and cue cards. In this space, consistency is key and necessary to reinforce or redirect behavior.”
Making resources like toolkits, books and videos available to those raising children with ASD can be useful for parents and caregivers to learn and also teach others about engaging and advocating for them.
As a parent with lived experience, Racyhel has learned patience and empathy, is grateful for the support her family has received, and advises other parents who have children recently diagnosed with ASD.
“First, I would say take a moment to breathe. It is a lot to process. It is okay to feel however you feel. You are not alone. It will be okay,” she shares.
“ASD parental support groups can be a great resource to listen to others who understand your experience. Second, get connected with available resources within your community, child’s daycare, and school. Every child diagnosed with ASD is different. Don’t compare your child to others, focus on their individual needs. Learn the specific skills to help your child meet their full potential.”
Beyond inviting individuals with ASD to social gatherings and activities, parents can make a difference by helping to promote and create meaningful opportunities for individuals with ASD in the workplace.
Image of Bryce provided by Raychel Rogan
While Raychel remains thankful for the growth of public knowledge around autism awareness, she hopes society can begin to grow from awareness to acceptance and inclusion. Moreover, this type of advocacy can be encouraged through intentional disability policy, especially that specific to the healthcare and child welfare systems, which should be designed to help children’s biological or adoptive parents care for them and help them thrive.