An estimated one in 31 8-year-olds are diagnosed with autism spectrum disorder, according to the latest data from the Centers for Disease Control and Prevention. With the prevalence of autism on the rise (in 2018, the estimate was 1 in 44 children), the CDC encourages parents to “Learn the Signs. Act Early.” Through its program of the same name, parents can access free resources in English, Spanish and other languages to monitor young children’s development.
Lee Mason, Ph.D., BCBA-D, Applied Behavior Analyst with the Child Study Center at Cook Children’s in Fort Worth, suggests parents use the CDC’s Milestones Tracker App, which can help monitor your child’s development from ages 2 months through 5 years. “The advantage here is that it gives you talking points with your doctors,” he says. “So when you go into that next doctor’s visit, you can ask them very specific questions.”
The earlier you notice delays and get an evaluation and diagnosis, the sooner your child can begin to receive early intervention services. In fact, “an experienced professional should be able to diagnose a child by 2 years of age. A child who is showing severe symptoms of autism can sometimes be diagnosed as early as 18 months of age,” says Julie Jacob, M.D., FAAP, a developmental pediatrician who sees patients at her practice, Jacob’s Ladder Developmental Pediatrics, in Frisco. “When children show milder symptoms, they might not come to anyone’s attention until school age, when teachers notice that the child is lagging behind their peers in language, socialization and behavior,” Dr. Jacob says.
Click to skip to these sections:
Signs your child may have autism
–Delays in social communication and interaction
–Behaviors or interests that may seem unusual
–Sensory challenges
–Other signs of ASD
What to do if you suspect your child has ASD
–What does the autism evaluation consist of?
Your child received a diagnosis—now what?
[Jacob] says autism shouldn’t be treated as a bad word. Instead, it should be incorporated in casual, everyday conversations.
Signs your child may have autism
So, what are the signs you should look out for that might indicate a child has autism? Common indicators can include:
Delays in social communication and interaction
Mason says one sign is a lack of engagement, which can manifest in a few ways. Ask these questions to yourself:
- Do you get reciprocity from your child when you approach them?
- Do they acknowledge your presence?
- If you’re holding up a toy, does your child notice it?
- If you move the toy around, do they track it with their eyes?
According to Jacob, in children younger than 2 years, these delays might include:
- avoiding eye contact
- lack of changes in facial expressions that match their emotions
- not smiling in response to another person’s smile
- not playing interactive games like peek-a-boo
- not using gestures such as pointing or waving
- not using words functionally to communicate
- not imitating actions of others
- not sharing interests
And in an older child, Jacob says the delays might include:
- preferring to play alone rather than with their peers
- having trouble participating in back-and-forth conversations
- not engaging in pretend or imaginative play
- having difficulty reading social cues
- not understanding humor or sarcasm
- difficulty with making friends
Behaviors or interests that may seem unusual
Does your child engage in repetitive behaviors? Mason says young children tend to engage in repetitive behaviors anyway (like watching Frozen for the 20th time). But children with autism will often engage in “restrictive, repetitive behaviors or they engage in the same thing over and over and over again almost compulsively.”
One example Mason cites is, if you lay your child in their crib and they look at the ceiling fan, a typically developing child might watch the fan for a little while, but a child with autism might watch that fan for 30 minutes, an hour or even longer.
Jacob says other behaviors or interests that may seem unusual include:
- playing with the same toys or watching the same shows over and over again
- not playing with toys as designed (lining them up, focusing on parts of objects like wheels on cars, etc.)
- reciting dialog from cartoons or TV shows (scripting)
- repeating the words they just heard (echoing)
- making repetitive hand or body movements (hand-flapping, spinning, jumping)
- having obsessive interests
- trouble adjusting to transitions or changes in routine
Sensory challenges
Does your child over or underreact to sensory stimuli? For example, if a book falls on the floor and makes a loud noise, how does your child react to it? “Many children are brought into the doctor’s office by their parents who think they have hearing loss because they don’t hear the sound of that book falling off the desk. They don’t attend to their name when they’re called by their parents,” Mason says. “And [the parents] are often surprised to find out that their child has ASD.”
Other signs of ASD
Autism can also be associated with other characteristics, Jacob says, such as:
- delayed physical coordination or motor planning skills
- delayed learning skills
- symptoms of ADHD (inattention, impulsive behaviors, hyperactivity)
- anxiety or mood disorders
- feeding problems
- sleep disturbance
- gastrointestinal issues like constipation
- seizures
- acting out behaviors (temper tantrums, wandering away from caregivers or secure locations, aggression, etc)
What to do if you suspect your child has ASD
If your child exhibits some of the above signs, you should:
1. Write down the behaviors and as well as the context.
Instead of saying your child cries a lot, put the crying in context: The other day, I took a toy away and my child cried for 25 minutes straight. Write down things, including how frequently these behaviors occur and how long they last. “The more notes that you can bring to the doctor, the better you can help them see what you’re seeing at home,” Mason says.
2. Talk to your child’s general pediatrician about your concerns.
They’ll do routine screening tests for autism at the child’s 18-month and 24-month checkups—or whenever a parent is worried, Jacob says.
3. Get a second opinion, if necessary.
“We know how important early intervention is,” Mason says. “So, if your pediatrician says, ‘It’s not a big deal, don’t worry about it,’ but you’re worried, get a second opinion. Ask for a referral to a specialist.”
4. Request an evaluation.
If your child is younger than 3, you can initiate an Early Childhood Intervention evaluation. You can find a provider through Texas Health and Human Services.
If your child is older than 3, you can request an evaluation through your local public school district. If you go through the public school district, Mason says, it’s not a medical diagnosis, but schools can help to identify certain intellectual disabilities or developmental delays and provide certain services—speech therapy, early childhood, special education and other related services.
At the same time, Jacob says, “you should look for a professional who can determine whether your child meets criteria for a medical diagnosis of autism so that you can enroll them in therapies such as Applied Behavior Analysis, speech/language therapy, occupational therapy, and physical therapy.”
What does the autism evaluation consist of?
“A comprehensive evaluation involves getting a complete picture of how your child is developing,” Jacob says, adding that it should include:
- taking a thorough look at medical, developmental, and family history
- using standardized assessment tools to evaluate your child’s language, cognitive, social, and adaptive skills
- referring for medical tests such as hearing exam, genetic studies, or other bloodwork
- getting feedback from teachers or therapists who may be working with your child.
Your child received a diagnosis—now what?
Once your child has been evaluated and received an autism spectrum disorder diagnosis, Jacob and Mason suggest the following next steps:
1. Get on a waitlist for Applied Behavior Analysis.
Applied Behavior Analysis is an evidence-based therapy that “has been shown to help autistic children develop needed skills and minimize undesired behaviors such as self-injury, and it has been shown to be successful for kids all across the autism spectrum, from mild to severe,” according to Child Mind Institute.
“Often the waitlists are long for ABA therapy,” Mason says. “Because of the intensity of the nature of the therapy, which can be between 30 and 40 hours a week, many centers can’t take more than a handful of children at one time.”
Mason recommends touring two or three centers to find the right one for your child. And as you tour the facilities, check to see if the children are having fun and whether the therapists who are working with the children are engaged. Mason also recommends asking lots of questions and making sure you like the answers you’re hearing. Ask questions that are specific to your child, as well as things like:
- What can you expect on a daily basis?
- What are the differences in the intensity of treatments?
- How much family involvement is expected?
- When and how often should families come in for training?
- Do you offer in-home services?
- Are there opportunities for siblings to get involved with the therapy?
- When will you know your child no longer needs ABA therapy?
- Is there a set duration of time for therapy?
- Does my insurance cover ABA and how much?
2. Find providers for the therapy services your child is referred for.
After an initial diagnosis, “they may be referred for private therapies such as behavioral, speech/language, occupational, or physical,” Jacob says.
3. Get other medical evaluations if necessary.
“Depending on your child’s specific needs, they might be referred for further medical evaluation such as hearing tests, bloodwork, genetic studies, and in some cases consultation with other pediatric specialists,” Jacob says.
4. Coordinate with your child’s school if they’re school-aged.
Mason says the school is going to be a terrific resource for providing some services. “In addition, a school-aged child might benefit from undergoing a Full and Individual Initial Evaluation (FIIE) through their school district to determine if they qualify for additional educational and behavioral supports in school,” Jacob adds.
5. Find parent support groups and resources.
“There’s a good number of families out there that are going through this as well,” Mason says. “So try to network and find some parent resource groups that can connect you with what they’ve done in situations and what they found success with.” Mason recommends Families for Effective Autism Treatment North Texas as a great resource for parents and says the Association for Science in Autism Treatments does a wonderful job screening out what is scientifically validated in terms of ASD treatments compared to what are the fads and the follies.
6. Talk with your child about their diagnosis, as well as family and friends.
“Having a conversation about autism should not be a one-time discussion but an ongoing process. It should begin as soon as your child seems intellectually capable and socially aware enough to understand it,” Jacob says. “Oftentimes, starting from a young age, children with autism may feel different from their peers, like they just don’t fit in. Receiving an explanation for their differences may help them better understand and accept themselves and promote a more positive self-image.”
She says autism shouldn’t be treated as a bad word. Instead, it should be incorporated in casual, everyday conversations. When explaining a diagnosis:
- keep the tone light and positive
- focus on strengths and challenges (like, your brain just works a little differently).
Finally, she recommends reading books and watching TV shows that depict autistic characters and helping your child find autistic peers so they begin to feel a sense of community and belonging. Mason points to Sesame Street as a great show to watch with your child. Julia is the show’s first character diagnosed with autism.
And when talking with friends and family, explain that autism is a spectrum disorder because no two individuals present the exact same way. “As the saying goes, if you know one person with autism, you know one person with autism,” Mason says.
“Talk about ways in which autism affects the child’s life and the ways it affects family’s life, but also don’t forget to talk about ways in which the child is not affected by autism.” For example, they can play in the park alongside typical kids. Share your own tips for how your family and friends can give additional support to your kid during everyday activities.
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