Alexa Watt, a Fort Worth mom and attorney, realized something was different with her son Trace at his 18-month checkup.
“There is a questionnaire aimed at screening for developmental and social delays,” she explains. “If I remember correctly, he was supposed to be saying multiple words, pointing to things and expressing his wants and needs with words or vocalizations of some kind. I was pretty surprised to see that, because he said only ‘Mama’ and ‘Dada’ and occasionally ‘ba-ba.’ He did not have any other words and rarely pointed at things.”
The pediatrician didn’t necessarily suspect autism but still recommended a referral. Watt and her husband decided to wait until after their next baby was born (Watt was almost through her second pregnancy) to see if Trace acquired more language.
He didn’t. “Again, I shrugged it off,” Watt recalls. “There was a new baby in the house, and that rocked his world. I thought, Some kids don’t talk until 3 or 4, right? I guess I was always questioning what we should have been doing, but in the postpartum haze we kept putting it off. If I’m being honest, a big part of that was not wanting to admit something wasn’t right.”
The family received an initial diagnosis of a significant speech delay. Trace plateaued in speech therapy, and sensory symptoms began to appear.
Trace was finally diagnosed with autism shortly before he turned 4. He is now 5. “Trace is an extraordinary, loving child with an amazing mind,” says Watt. “We suspect he has a photographic memory and a talent for numbers and patterns. Socially, we have a lot to do.”
Know the signs of autism
Autism diagnoses can be made at any age, but signs usually appear early. “Most parents report noticing symptoms before 2 years of age, with many reporting symptoms before the age of 1,” notes Clinton Smith, licensed psychologist at the Center for Autism and Developmental Disabilities at Children’s Health and assistant professor in UT Southwestern’s Psychiatry Department. “The onset of symptoms can be gradual, with a child not hitting milestones as expected, or there can be a noticeable regression in functioning—which often occurs in the 18–24 month range.”
Smith explains that in the latter case, a child may lose most of their words and become disengaged. When it comes to not meeting milestones in the first place, there are different markers to consider.
By 12 months of age, the chance for an autism diagnosis increases when children are not babbling, not using gestures such as pointing, not directing smiles at those around them, and not responding when spoken to and appearing uninterested in others.
At 18 months, most neurotypical children use at least single words, and by 2 years, they use two-word phrases.
But uttering words isn’t enough. “This language must be spontaneous and involve more than a child repeating what others have said or using the same phrase in a repetitive manner,” says Smith.
Additionally, parents whose toddlers are ultimately diagnosed with autism often notice repetitive behaviors and movements that are paired with challenges in social interactions. “Many young children flap their hands when excited. If this behavior persists or is present throughout the majority of the child’s interactions, then it may be a repetitive behavior,” says Smith.
Other repetitive behaviors may include teeth grinding, spinning for extended periods, moving hands or fingers in unusual ways or body tensing.
Girls may also present some different signs compared to their male counterparts. They are usually diagnosed later than boys, and the current ratio shows four boys are diagnosed for every girl.
But Smith explains that statistic may not be an accurate reflection of the population. “Many believe this is due to girls developing language at a similar rate to their peers. They also tend to engage with others more than boys on the spectrum,” Smith says. “Girls with autism may use more repetitive language, echo each others’ speech, struggle to adapt to changes, speak with an usual voice or struggle with physical boundaries compared to peers. Their play is often overly repetitive, and conversations are typically shorter.”
If you’re seeing any of these signs, it’s important to bring them to the attention of your child’s pediatrician—even if it’s hard to admit your child could be developing differently.
“It’s so devastating to go through that as a parent,” shares Watt. “I felt like I wasn’t parenting him right, and was terrified there was something ‘wrong’ with him. I tried to explain it away by telling myself that the milestones are just averages, that all children are different and develop in their own time. And that is absolutely true, but it is not an excuse to look the other way when your child isn’t checking all the boxes.”
Smith concurs. “Not all children who struggle to meet milestones are diagnosed with autism. However, a formal evaluation at an early age will help to develop a treatment plan designed to meet your child’s unique needs.”
Diagnoses in older children
Some children may meet milestones but display other signs of autism, such as struggling in their interactions with others or displaying repetition. They may be considered high functioning. “These children are often identified when they are older,” says Smith. “They may re-enact commercials or other things they see in media, with few attempts at spontaneous, imaginative play. They tend to echo others’ speech and are highly routine-oriented.”
Some children on the spectrum are also very rule oriented. “Other children may view them as a ‘tattle tale,’ or they may be able to be only a leader or only a follower in play, and not switch roles,” Smith adds. He goes on to say that these kiddos may have trouble responding to social cues, and it can be tough to redirect them from a favorite topic.
Older, more high-functioning children on the spectrum often have their symptoms recognized in school. “The school district typically completes an evaluation for eligibility to receive special education services under the designation of autism spectrum disorder. It’s important to understand that this is not a diagnosis of autism,” says Smith. “Parents who wish for their child to receive services—such as applied behavioral analysis—or governmental supports will need medical confirmation from a medical or mental health professional.”
The first actions to take
If you think your child might have autism, your first step should be to document your concerns.
Smith suggests asking these questions: What are you noticing?; When do you notice it?; and How often is it happening? “Videos of the behavior can be helpful,” he says. Bring that information to your pediatrician; he or she can then refer your family to a specialty clinic.
Smith says there is some misinformation—even among medical and mental health professionals—that formal testing for autism is appropriate only after the age of 3.
“This is incorrect. The testing instruments used in autism evaluations can be used at 12 months of age, and we can give the diagnosis as early as need be,” he states. “Our clinic typically prefers to test children starting around the age of 15 months. The American Academy of Pediatrics recommends standardized screening from 18–24 months.”
The hope is that the diagnosis process is as swift and straightforward as possible. Unfortunately, that doesn’t always happen. As indicated, Watt received a misdiagnosis of speech delay for her son when he was 2. “That was after a meeting with the doctors where we discussed his communication delays, behavior at school, interactions with others. They observed him playing with us and his baby sister. It was cursory and over in less than an hour,” she remembers.
When Trace was 3, the family pursued another evaluation. “By this point, all of his speech therapists were recommending we see another doctor. We filled out the paperwork for another group of developmental pediatricians and had to wait almost nine months to get seen,” says Watt.
“About four months into that waiting period, he was so far behind where he should have been and I was getting frantic. We started the process of getting an academic diagnosis through Fort Worth ISD, and that process was quicker and more streamlined. They diagnosed him with autism four months shy of his fourth birthday, and two months later, we finally got his medical diagnosis.”
Watt’s son has a mild to moderate form of autism, in addition to a speech disorder. And she still considers what she might have done differently.
“Hindsight is everything, right? I really wish we would have gotten a second opinion earlier than we did. I wish at Trace’s first evaluation we had insisted on a thorough assessment. I wish I could say ‘Trust your gut,’ but honestly, with autism, our parenting instincts can sometimes lead us astray,” she admits. “My ‘gut’ told me he was fine and developing in his own way, but that mama bear instinct blinded me from the truth: that he needed intervention.”
Find emotional support
Emotional reactions to an autism diagnosis are far from uniform. “Some parents have a sense of relief and validation, while other parents experience various degrees of grief, guilt or anger,” reports Smith. “It’s OK to not be OK. There are many professionals ready and equipped to help both your child and you.”
Counselors can be of help for moms and dads, as well as support groups.The groups may be available through your child’s assessment or treatment provider, as they are through Children’s Health’s Center for Autism and Developmental Disabilities.
You can also search out groups in the community, online and on social media; Watt is part of the #MomStrongFW group on Facebook.
And remember: take everything one step at a time. “The list of recommendations following a diagnosis can seem overwhelming,” says Smith. “My general advice is to pick one thing on the list that seems the most attainable and start there.”
Finally, Watt encourages moms and dads to keep the right perspective. “These kids develop differently. They really have minds that surpass our understanding. We have to tap into those differences and use early intervention to help them realize their full potential in a world that isn’t always aware of or sensitive to their uniqueness.”
Image courtesy of iStock.