Article 2: Know the Signs, No Shame
When VFAAB (Vietnamese Family Autism Advisory Board) volunteers attend health fairs, members of the public ask lots of questions. Parents ask about their children, “My child is two and saying only a few words, my mother says he will grow out of it, should I be worried?” Others express concerns about family members, “I wonder if my niece might have Autism, but I am afraid to bring it up.” Friends and relatives struggle to know how to talk about Autism. Myths, misunderstandings and stigma color these conversations, and parents can be left feeling confused, isolated, even ashamed.
Some basic knowledge can help ease these conversations and create a supportive community for families caring for children with Autism. Autism is common, affecting 1 in 54 children in the US (CDC, 2018). If you know 60 families, chances are you know someone affected by Autism. Autism is known as a spectrum disorder, where some individuals are more significantly affected by the core symptoms than others. “One of the first things to understand,” explains Dr. T.K. Brasted, the Director of Behavioral Health at HopeCentral in Seattle, “is that Autism is a neurodevelopmental disorder.” The brain makes connections in different ways in children with Autism, affecting the way they communicate and relate to others. Children with Autism also process input from their environment differently, sometimes resulting in unusual behaviors or reactions to situations. “Autism is not a mental illness, per se, or just a phase,” Dr Brasted goes on to explain, “but a disability that can be greatly helped by specific therapies started when the child is young, preferably soon after diagnosis. If you have a concern, talk to your doctor about it.” Physicians begin to look for certain patterns as early as 18 months of age. Pediatricians and family doctors screen for developmental issues during well child check-ups, often using paper questionnaires like the MCHAT-R or the ASQ. A parent’s answers on these questionnaires help physicians know what questions to focus on during well child checks. “Autism does not necessarily limit the contribution a child can make to their community and society,” Dr Brasted observes, “but early intervention does require lots of time and effort on the part of parents.”
Adrian’s (not his real name) parents sought the help of their doctor when Adrian was 2 yo and not talking. “I felt sad,” his mother shares, “Eighty percent of the time, I cannot understand my son. And I cannot understand why he does not want to sleep. He liked to be in the car and driving around to fall asleep.” Adrian’s doctor diagnosed him with Autism. “I was very sad and shocked with the news. I worried a lot about his condition and wondered how I could support him. I am lucky to have a husband to support us and accommodate our son’s daily activities and needs.” She reports feeling overwhelmed, working full time and caring for her son, “Sometimes I have no energy, but I keep telling myself that I have to get strong and move on for my son and family.”
Knowing the signs of autism is an important first step. Autism can be formally diagnosed at 18-24 months, with warning signs seen as early as 9 months. The brain grows most rapidly between birth and 3 years old, marking an important window for therapy. Even so, autism is still routinely not being diagnosed until age 4 or 5. Some parents are too embarrassed to bring up concerns about their child’s development, or receive a referral but do not follow-up because of work or family demands. Some of the earliest signs of Autism include a lack of non-verbal gestures, like shaking the head no, waving, or pointing. These may also be a predictor of language delay. By 16 months of age, a child should be using 16 gestures (see sidebar list below). Early intervention with speech and occupational therapy can help “rewire” the brain during its most rapid period of growth and development. Even before a formal diagnosis of autism, early intervention services can begin.
In 2019, HopeCentral interviewed groups of parents in the Vietnamese community as part of a grant from King County/Best Starts for Kids. The interviews identified a number of ideas about Autism held in the community at large. Two common ideas are discussed below:
MYTH: Something the parents did caused the child to be abnormal.
While the cause of Autism is not fully understood, it appears that a combination of genetic and environmental factors play a role. Specific genetic abnormalities are identifiable in about 20% of children with Autism. Autism does tend to run in families, being more common in identical twins and siblings of children with a diagnosis. ASD also seems to be slightly more common in offspring of older fathers. There is no evidence that vaccines given to pregnant women or children cause Autism. Busy parents who work a lot also do not cause Autism, although consistent and affectionate parent-child interactions can be very important in ameliorating some of the social communication challenges of children with developmental delay.
MYTH: Tech overuse causes children to develop Autism.
Screen time is not great for young children’s creative brains, but it does not directly cause Autism. The brain grows dramatically before age three. The AAP reports that excessive television viewing in early childhood is associated with cognitive, language, and social/emotional delays (AAP Council on Communications and Media). Hands on, unstructured and social play with adults and other children do the most for brain development. Interpersonal interactions such as talking, singing, laughing, playing games all help young children learn. If screens are used, time should be limited and content carefully chosen. Selecting educational/pro-social content over violent content can improve behavior. Social isolation and lack of time outside can also make behaviors worse. This has been a big concern for families during the pandemic.
What can you do?
Learn the signs of Autism and remember that early diagnosis helps children succeed. Parenting can be challenging, especially parenting a child with autism can be overwhelming at times. Be kind when you see a parent struggling with a child’s behavior in public. The COVID-19 pandemic has intensified challenges for children on the spectrum, and a kind word or offer of help may make someone’s day. “I would like to encourage parents with autistic children, “Adrien’s mother adds, “Don't give up on your child. They need you beside them day and night. Stay calm and accept the fact and reality and find ways to support your child, don't blame yourself or let others put you down since they don't know what they're talking about. Seek out help. Those who work in the field have good hearts and parents must stay in touch and connect with them because they understand and have passion in caring for parents as well as children with disabilities.”
Signs of Autism that can be observed in children 16 months of age (from Autismnavigator.com)
Hard to Get Your Baby to Look at You
Rarely Shares Enjoyment with You
Rarely Shares Their Interests with You
Rarely Responds to Their Name or Other Bids for attention
Limited Use of Gestures such as Show and Point
Hard to get child to look at you and use a gesture and sound
Little or No Imitating Other People or Pretending
Uses Your Hand as a Tool
More Interested in Objects than People
Unusual Ways of Moving Their Fingers, Hands, or Body
Repeats unusual movements with objects
Develops rituals and may get very upset over change
Excessive Interest in particular objects or activities
Very focused on or attached to unusual objects
Unusual reaction to sounds, sights,or textures
Strong Interest in Unusual Sensory Experiences
WHAT IF YOUR CHILD SHOWS SOME EARLY SIGNS OF AUTISM?
Any one of these signs may not be a problem. But in combination, they may signal a need to conduct a screening or diagnostic evaluation. As a general guide, if your child shows any 4 of these early signs,speak to your primary doctor to screen your baby for autism. If your child shows 8 or more of these early signs, ask for a referral for a diagnostic evaluation. Talk to your child’s doctor or teacher about any of these early signs or contact your local early intervention
Program. Find your local program at https://www.dcyf.wa.gov/services/child-development-supports/esit. Or Call the Washington State Family Health Hotline at 1-800-322-2588.