According to the American Academy of Pediatrics (HealthyChildren.org), autism spectrum disorder (ASD) is a neurologically-based disability that affects a child's social skills, communication and behavior and affects approximately 1 in 68 children, with boys five times more likely to receive the diagnosis than girls.
Stacey Martin, MA, is a Kansas City area board certified behavior analyst (BCBA)/licensed behavior analyst (LBA) with Summit Behavioral Services. She notes that autism is a spectrum disorder and labeled so because of the unique manner in which it impacts children. “No two individuals identified as being on the autism spectrum will present the exact same profile of symptoms and challenges, as diagnoses are based on the characteristics presented by the individual,” she says. “In identification of an ASD, the broad symptoms are in social communication/interactions and restricted, repetitive patterns of behavior, interests or activities.”
These symptoms will not be apparent at birth. Typically, symptoms may occur in the early stages of your child’s life, with regular development occurring within normal limits until the time communication becomes necessary for social engagement. Another scenario is regular development that occurs in some areas at a much faster rate than expected, while other milestones are lacking or significantly underdeveloped. “Signs of autism can vary at different stages of development, but all fall within the two areas of social communication/interactions and restricted, repetitive patterns of behavior, interests or activities,” Martin says.
Parents should realize that typical milestone markers are just a general framework for tracking a child’s progression, and development of individual children varies. Martin recommends utilizing resources such as the Centers for Disease Control and Prevention and their "Learn the Signs - Act Early" program (CDC.gov/ncbddd/actearly/concerned.html) for information about typical development expectations and guidance on when to seek further assessment from your physician.
The American Academy of Pediatrics recommends general developmental screenings at 9, 18 and 24 or 30 months, and screenings more specific to autism at 18 and 24 months or whenever you have concerns for any atypical developmental patterns your child has. If there is a diagnosis, parents should seek intervention services to support their child and family as soon as possible.
Megan Carman, BCBA, of Kansas City Autism Training Center agrees. “My advice for parents just receiving a diagnosis is to make learning about services their number one priority. It may sound harsh, but think of treating an autism diagnosis with the same urgency that you would treat another life-altering medical diagnosis,” she counsels. “Find effective services as quickly as you can and be prepared to make sacrifices to set your child on his or her best learning trajectory.”
Martin advises the same: “Learn as much about autism as you can but make sure you are utilizing trusted sources. For any individual diagnosed with ASD, but especially young children, early, intensive intervention is critical.”
Carman recommends starting with the Association for Science in Autism Treatment (ASATOnline.org) or locally with the Kansas Center for Autism Research and Training at KU Med (KCART.ku.edu). Carman also says support services should include parent training, practitioners who want you involved in your child's intervention and agencies dedicated to providing empirically-driven intervention, such as Applied Behavior Analysis (ABA). “ABA is empirically shown to help children with autism to learn faster, with research backing that early ABA intervention has the greatest effect on a child's future learning trajectory,” Carman says.
Treatment and support services for your child with ASD are vital, but remembering the impact of diagnosis on all members of the family, including siblings, is equally important. “There are a variety of resources available to assist parents with supporting siblings of those on the spectrum,” Martin says. “Sibling support groups and books are available to help siblings and peers understand ASD, as well as providing them with ways to support their sibling on the spectrum.”
While making sure your children without a diagnosis receive information and support, they may be a great resource for helping you understand typical age development—and can provide positive models of appropriate behavior to their sibling who has been diagnosed. “Sometimes siblings without an autism diagnosis can be the best thing for a family, as far as providing play opportunities, insight to what's cool for kids right now, and demonstrating benchmarks for development,” Carman says. “For example, if you aren't teaching your 5-year-old with autism to help with household chores, then your 4-year-old asks to mix brownie batter, turn the key in the door or water the flowers, it should serve as a reminder that kids at that age are ready and able to learn by helping with chores. Hopefully, you or someone providing intervention can come up with a household chore that's appropriate for the skill level of your child with autism.”
Siblings are not the only sources of appropriate developmental engagement for children with ASD. Having opportunities to engage with same-age peers is important, too. Carman notes that teaching children with autism to engage in activities enjoyed by their peers could open up social engagement opportunities. “Pokémon Go was a great example of the outcome of teaching children with autism to engage in "cool" activities—a child who may not have the skills (yet) to chat with classmates, could still play Pokémon at recess. There are more social opportunities available among children who share interests,” she says.
If you have concerns for the development of your child, the best first steps are to contact your pediatrician.
Karah Chapman is a school psychologist in the Kansas City area, where she gets to work with children in all ranges of development and finds joy in watching them grow and explore at all levels.
As always, please consult your health care provider with any questions or concerns.