What Families of Children With Autism Want You to Know
About one in 59 children has been identified with autism spectrum disorder (ASD) according to the Centers for Disease Control and Prevention. So, chances are you know a family who has a kid with autism.
But maybe you're not aware of the kid's diagnosis. Or perhaps you are, but you don't know where to start when it comes to learning more about ASD.
We gathered advice from parents and medical experts to find out all the things that parents with kids who have autism might want you to know.
The Basics of Autism
"Autism is a complex developmental disorder that can cause problems with thinking, feeling, language, and the ability to relate to others," according to the American Psychiatric Association (APA). "It is a neurological disorder, which means it affects the functioning of the brain. The effects of autism and the severity of symptoms are different in each person."
People are typically diagnosed in childhood, and the disorder is 3 to 4 times more common in boys. It's almost always a lifelong disorder, but treatments can help kids with ASD be happy, healthy, and independent.
Characteristics of Autism
Autism symptoms aren't fixed and might look different in different people. According to the APA: "Symptoms can range from mild to severe and often change over time."
Characteristics of autism typically fall into three categories: communication issues, difficulty relating to others, repetitive behaviors, frustration with the unknown, and cognitive skills.
No two kids with autism are the same, so some children have a hard time using or understanding language, some don't make friends easily, other can't read facial expressions, some kids are hyper-focused on their routines and have a hard time adjusting to unexpected changes in the plan.
Kids with ASD can have additional characteristics or medical components to consider, too, like difficulties with sleeping, toilet training and sensory challenges.
Life Is Different for Kids With ASD
Adrienne P. Robertiello is an educator at Children’s Specialized Hospital, which is the largest pediatric rehabilitation and specialty pediatrics hospital in the United States. She's also a mom of a kid who has autism, so she's more than an expert when it comes to navigating the ASD world.
"Life can be different for many families caring for a child with ASD," she said.
"As difficult as it may seem to involve a child with ASD in recreation, leisure and family activities, the more a child with ASD is out in the community, the more he or she has opportunities to become familiar and comfortable."
Give Parents of Kids With Autism Time
When a friend finds outs their child has autism, don't bombard them with questions or research. While you're just trying to help, it's best to give parents some space and time.
"No matter what reaction parents have to their child’s diagnosis of ASD, it's important to give sufficient time to come to terms with what the diagnosis means to them and their family," Robertiello said.
"Parents need the time to educate themselves about the disorder and share what information they feel comfortable," she said. "The diagnosis can be a challenging experience for parents as they may fear that they may not be accepted or included as they were in the past."
Help Where You Can
There is no point in staying ignorant about ASD, as your children are bound to encounter kids who are on the spectrum. And as you'd never want your child to shun a possible friend over a difference, don't that as an adult.
Instead, take the opportunity to help where you can.
"Take the time to learn about and support the interventions that parents use to help their child," Robertiello advises. "Provide parents with opportunities for them to share suggested ways for you to communicate, interact, respond to and care for their child."
Hope Is Not Lost
While raising a child who has autism can be a challenge, it isn't hopeless.
"Having a child with ASD does not mean letting go of your hopes and dreams for your child," said Lindsey Sterling, a clinical psychologist specializing in adolescent autism spectrum disorder, who leads the specialized treatment team for ASD at The Weichman Clinic at Hoag Hospital's Neuroscience Institute in Newport Beach, Calif.
"Parents of children with ASD have the same hopes goals for their children as other parents do," she said. "It might just take a different path to get there."
You Can't See Everything That's Occurring
"When you see a child with ASD ‘acting out’ or behaving differently than other kids, it’s easy to assume that the child is willfully disobedient or the parent is not using effective strategies," Sterling said.
"Instead," she said, "consider that the child with ASD is navigating additional challenges that we might not be able to observe, like sensory sensitivities or specific anxieties."
Not every symptom or sign of ASD is visible, so it is crucial to use patience and hold back judgement when you find yourself in these situations.
Kids With ASD Have Feelings
While some children on the spectrum might not recognize or be able to communicate all of the feelings his or her fellow humans have, it doesn't mean they don't have them.
"Children with ASD have feelings," Sterling said. "They might not express them in the same ways as other children, but they have intense feelings like everyone else."
Kids With ASD Want and Need Friends
"Our kids with autism experience the world differently, but they are like any other kids in many ways too," Sterling said. "They want to be seen, accepted, and valued for who they are."
Even if a child with ASD seems socially disconnected, many have a deep desire to make friends,.
"He or she may struggle with the skills needed to form and keep friendships," she said. "Initiating interactions with them and including them in social get-togethers can be beneficial and fun for everyone involved."
No Two Kids Are The Same
Moms and dads already know this: no two kids are the same. The same rule applies to kids who have autism.
"Just like typically developing children, each child with ASD is unique," Sterling said. "Ask parents about their child- their likes and dislikes, their talents and strengths, how they are doing in school- just as you would ask about a typically developing child."
ASD is a lifelong disorder and will affect each person and family in different ways throughout their lifespan.
"As people with ASD reach adulthood, many can live independently, having mutually rewarding relationships and meaningful employment, and their need for support may be subtle,"Robertiello said. "Others with ASD may need very substantial support in all major areas of functioning."
Apologies Are Not Needed
"When you learn that a child has been diagnosed with ASD, ask parents about their child and their experience in an understanding way, rather than saying 'I’m sorry,'" Sterling said.
Instead of apologizing for a disorder that people can't opt in or out of, engage with parents and kids who have autism.
"They may already feel isolated given their child’s differences," Sterling said. "Welcome and appreciate these differences, and invite them into your community and social support networks."
"Individuals and families with ASD don’t look for special or preferential treatment," Robertiello added. "What they do need is consideration and support for the person’s unique needs."
It's Okay to Ask Questions
Families of kids who have autism are just like everyone else: they want to be known and accepted in their schools, churches, and communities.
"Asking questions is OK, as long as it’s done with compassion," said Penny Williams, and ADHD and autism expert who has published several books, developed online training for parents, and coaches families.
"For example, ask, 'I see that John seems to have a hard time with crowded places. What causes that? Is there something we can do to help him during those times?'"
The World Can Be Harder for Them
Lots of people don't think twice about a quick run to the grocery store, but the outing can be a big deal for a family dealing with autism.
"Children with autism experience the world differently," Williams said. "That means that going to family gatherings, or the children’s museum or just the grocery store can be an uncomfortable or even painful experience for a child with autism."
"We plan for as many potential struggles as possible before we even leave the house," she said. "Our kids are on high alert a lot, and the parents are too."
Use Your Compassion
Through her online training and personalized coaching, Williams helps a lot of families adapt to their new normal following an autism diagnosis.
She said the best thing you can do for a family is be understanding and compassionate.
"Don’t pretend to know what it’s like and don’t dismiss the struggle," Williams said. "Instead, offer empathy and a shoulder to lean on. Your support strengthens that family."
Celebrate the Small Wins
Robertiello said, "It may take longer for a person with ASD to learn or to respond. They may need to complete tasks differently based on their needs. Be patient, be flexible, and celebrate successes — no matter how small."
Positive Self-Esteem Can Be Challenging
"They may experience isolation, bullying, and exclusion among their peers," Robertiello said. "It is important to accept and support a person for who he or she is, without trying to change the person."
For instance, many people with ASD engage in repetitive behaviors — often called stimming, which can involve hand-flapping, rocking, spinning, humming, and lining up objects.
"Because stimming can help a person with ASD remain calm or focused," she advised, "we should refrain from staring, criticizing and stigmatizing these common behaviors which may be helpful to them."
Parents of Kids With ASD Are Not Superheroes
Parents of children with autism are not any more exceptional than other parents.
"Being a parent of a child with special health needs is a very different experience, but everyone has different parenting styles, preferences, and challenges," Robertiello said.
All parents try their hardest to do the best job they can with the resources they have available.
"Parents of children with ASD don’t need a pedestal," she said. "They are not always experts, don’t always get things right, become insecure, lose their patience, and have a hard time keeping up with the laundry."
In other words, they're just like the rest of us.
Help Reduce Stigma
People with ASD and their families often feel excluded from many social activities and events. Start with those close to you.
"Take the time to reach out and share meaningful time with each other," Robertiello said. "Instead of doing things for people with autism, do things 'with' them."
Then consider the role you have in your community and if you could make a positive change for families who have kids with autism.
"Instead of engaging in projects about autism, work together as a community to support inclusivity," she said. "Take the time to interact with and involve people with autism and their families in your community."
Plus, what the child needs as a toddler changes when they're a teen and then changes again when they become an adult.
"Many families have difficulty accessing services for their child with autism," Robertiello said. "They may have difficulty getting referrals and insurance coverage. In fact, many families do not have access to providers who can make an appropriate diagnosis for their child. Adding employment demands, the care of other family members, maintenance of a household and other personal matters, caregivers have little time or energy for self-care and personal interests."
Caregivers Need a Break
Asking for help can be hard for family members who are juggling a lot at once.
"Respite care is a basic need for families living with ASD, finding the time to take a break from many of life’s demands," Robertiello said. "This supports caregiver well-being and helps preserve family balance."
Robertiello said those caring for autistic children can find resources for respite care in their local school districts, colleges, community organizations, neighbors, religious communities, family members, case managers, and through their physicians.
Additionally, governmental agencies sometimes provide respite workers or financial support to help cover the expense of respite care.
Simple Acts of Kindness Go a Long Way
There are a lot of simple ways to help families living with ASD.
"Families would appreciate having someone to listen without judgment and provide some practical help, downtime and opportunities to socialize and enjoy the activities they like," Robertiello said. "There is no shame in getting the help they need."