The First Things You Need To Know When Your Child Is Diagnosed with Autism Spectrum Disorder

Let’s start with the numbers. According to the latest data collected by the Centers for Disease Control and Prevention (CDC), an estimated 1 in 59 children are diagnosed with autism spectrum disorder (ASD) in the United States, with boys roughly four times more likely to be diagnosed than girls. ASD is reported to occur in all racial, ethnic, and socioeconomic backgrounds, and the World Health Organization (WHO) reports 1 in 160 children diagnosed worldwide. Long story, short: You are not alone.

Maria’s son was nearing his fourth birthday when she first suspected he might need intervention. It was little things, which made it confusing. Parents are often cautioned to avoid comparing children or getting too caught up in developmental milestones, and Maria wasn’t sure if her concerns were valid or if she was overthinking.

Her son never engaged in reciprocal play and struggled with sharing. He was rigid and couldn’t handle even the slightest change to his routines. When his preschool teacher requested a meeting to discuss his “meltdowns” at school, she knew it was time for an evaluation. While she knew how to cope with his needs, it was becoming increasingly difficult for him to function well anywhere but at home.

The CDC notes a lag between the time parents voice first concerns about development and the comprehensive developmental evaluation. This is significant because early identification plays a critical role in connecting parents to resources to help their children. Early intervention can make a huge difference in the life of a child with ASD.

While research on the causes of ASD is emerging and remains mixed, there does appear to be a combination of genetic and environmental factors that take effect during fetal development.

Some children show symptoms of ASD during infancy, such as minimal eye contact or nonverbal communication, lack of response to name, or indifference, while other children appear to develop age appropriately only to regress later, including (but not limited to) loss of language skills, aggressive behavior, or appearing withdrawn.

Autism spectrum disorder presents a unique mixture of symptoms in each child and can range in severity, from low functioning to high functioning. It helps to understand both the social communication and interaction symptoms and the patterns of behavior that can emerge in children with ASD.

A diagnosis of autism spectrum disorder can trigger a mixture of emotions for parents and caregivers. “Many parents say they knew something was wrong, but just didn’t know what it was,” says Bonnie Ivers, Psy.D, Clinical Director, Regional Center of Orange County. “They feel everything from shock and denial, to relief or resolve because they knew something was not okay.” Here are a few of the signs. For a complete overview, click here.

Differences In Social Communication And Social Interaction

Children with autism may exhibit persistent deficits in communication and interaction across multiple contexts, including some of the following:

• Poor eye contact

• Difficulty with reciprocal interactions

• Doesn’t respond to name or appears not to hear parents calling

• Resists cuddling or other affection

• Delayed speech or loses previous ability to speak

• Speaks with abnormal tone or rhythm

• Can repeat words but doesn’t know how to use them

• Difficulty recognizing nonverbal cues

• Difficulty reading facial expressions

• Doesn’t express emotions

• Doesn’t appear to understand simple directions or questions

• Appears aggressive, passive, or disruptive in a group context

• Difficulty making friends or absence of interest in peers

• Failure to initiate or respond to social interactions

Distinct Patterns Of Behavior

A child with autism might exhibit restricted, repetitive patterns of behavior, interests, or activities, as displayed by any of the following:

• Stereotyped or repetitive motor movements (rocking, spinning, hand flapping)

• Behaviors that can potentially result in self harm such as head banging, or biting

• Lack of flexibility: prefers specific routines and exhibits distress at small changes

• Difficulty with coordination, including clumsiness, walking on toes, or stiff/rigid posture

• Fixed interests

• Hyper or hyporeactivity to sensory input, including sensitivity to sound, light, or touch, but indifference to pain or temperature

• Doesn’t engage in imaginary or imitative play

• Specific food preferences

While confronting the diagnosis can feel overwhelming at first, there are steps parents can take to cope with the diagnosis and begin gathering resources for the child.

1. Absorb the information: This sounds like a natural first step, but knowing something isn’t right and receiving an actual diagnosis are two very different things and can trigger feelings of sadness, confusion, and anxiety. “It can bring up feelings of fear and worry,” explains Ivers, “because of the uncertainty about their child’s future.” It helps to take a moment to let the information sink in and work through your feelings about the diagnosis before you jump into figuring out what to do and how to support your child. The parent’s emotional responses send important messages to the child. Give yourself time to write your thoughts down in a journal, talk through it with a friend or close family member, or simply take a long walk and think through what you were told. When parents engage in self-care, they are better able to communicate with and respond to the needs of their child.

2. Talk to your child: Given that ASD includes a wide range of symptoms and functioning, it’s best to talk with your child’s treatment team about how to discuss the diagnosis with your child. In general, simple facts and what to expect regarding differences between your child and your child’s peers and/or siblings is best. “There are no firm rules for why, when, and how to tell your child about their diagnosis,” says Ivers. “It’s really dependent upon the child’s abilities, their understanding and awareness, combined with the family’s knowledge of what is best for the child.” Practice with a spouse or friend before you talk to your child. You might say something like, “Your doctor said that you have autism. That means your brain works in a certain way. It actually explains why you like things to be the same and you don’t really like changes.”

3. Gather information: Ask your child’s treatment team for a list of resources to help you learn more about ASD. Google searches can result in inconsistent information, so it’s best to ask for help before researching on your own.

4. Learn how to advocate for your child: Getting a diagnosis is an important first step, but beginning treatment and understanding your child’s needs comes next. Ivers recommends contacting your insurance about behavior treatment, which is commonly used in early intervention. As your child grows, you’ll need an Individualized Education Plan (IEP) to assist with educational accommodations and other services specific to your child’s needs (examples include OT, adaptive physical education, speech therapy, social skills groups, and individual therapy.) It’s also important to learn how to advocate for your child with social situations, family, and extra-curricular activities. When other people involved in your child’s life understand your child’s communication process, individual needs, and symptoms, they can work on accommodations to help your child thrive.

5. Create a support network: It helps to have a community of people by your side who know what you’re going through and how to help. “Autism presents major challenges for families, so it can be very helpful to connect with others who understand what they’re experiencing,” says Ivers. Parents can usually find support groups in their area through Autism Speaks. It can also be helpful to ask members of the treatment team for referrals, as they work with many parents in the area. An autism diagnosis can feel overwhelming in the moment, and it’s okay to feel confused or scared or any other emotion. Whether you suspected it all along or it seemed to come from nowhere, it can take time to process the information. It’s important to remember that you are not alone and there are resources available for your child. Open up to your existing support network and reach out to local groups. Support and understanding go a long way toward helping you through this beginning phase of understanding autism.