Being a parent can be a pretty overwhelming experience with new challenges every day. Being a parent to a child with an autism spectrum disorder diagnosis has its own unique challenges. But so many tools and support are out there for parents and children navigating an autism diagnosis. April is World Autism Month, and CafeMom spoke with licensed psychologist Dr. Ivy Chong, who’s also the chief clinical officer of the therapy program Little Leaves Behavioral Services. We got her best tips on parenting a child who is diagnosed with autism spectrum disorder.
“While it may be scary when your child is not developing the way they should, you are the best advocate for your kid and there is help and support out there,” Chong says. For parents who think that their child may meet the requirements for an autism diagnosis, read on for her advice on navigating that new world.
More from CafeMom: 20 Things Everyone Needs To Know About Autism
Children can be diagnosed quite young.
Chong says most diagnoses come when a child is around 3 or 4 years old (or even later than that), but the science exists to find out much earlier. “We can start seeing symptoms as early as 12 to 15 months, sometimes a little bit earlier,” she explains. For parents with children approaching a year old, it’s not too early to start noting potential symptoms of autism.
Pay attention to these potential symptoms.
According to Chong, symptoms to look out for include a lack of “social smiling” (aka smiling in response to something or someone), a lack of eye contact, repetitive movement, disinterest in playing with toys, and speech delays. “And then at any age you start seeing previously acquired skills start to diminish or go away, that’s a big warning sign as well,” she adds.
Parents can note any feeding issues.
Although not a symptom per se, Chong notes that children with autism may have difficulties at meal time. Often this can be due to being uncomfortable with certain textures or flavors. For parents with seemingly overly picky eaters, it’s worth mentioning to a pediatrician — especially if it runs in conjunction with other symptoms.
“Typically picky eating and selectivity is something that doctors honestly will just say if they’re hungry enough, they’ll eat. A child on the spectrum? That’s just not true. Most of them will outwait any parent to consume anything,” Chong says.
Talk to a pediatrician.
For parents who do notice the aforementioned symptoms, the first step is talking to the child’s pediatrician.
Chong recommends asking the doctor for an autism screener such as the Modified Checklist for Autism in Toddlers, Revised, or M-CHAT-R. “If they feel their pediatrician is not hearing them, they can find a screener [online], do it themselves, and then bring the information to the pediatrician,” she advises.
One such online screener is available at the Autism Speaks website.
Be the noisy parent.
Unfortunately, not every doctor is great at listening to their patients. For anyone who believes something is off with their child, don’t be afraid to speak up. As Chong encourages, “Be the noisy parent.” She adds, “You know better than someone that sees your child in a snapshot. If you have that gut feeling as a parent, keep pushing.”
The earlier a diagnosis, the better.
Parents should push for answers because the earlier a child can be diagnosed with autism, the better things can go. Young children have so many learning opportunities every day as they grow and engage with the world, and it’s important to capitalize on that.
“The earlier you identify it, the earlier we can teach those skills to minimize the gap between the child and their peers,” Chong says. “As a society, we have a bit of a wait and see approach, but unfortunately a wait and see approach in the case of autism delays access to treatment.”
Therapies can be tailored to the child.
Chong says therapies for children with autism can be intensive. “Programs generally run 15 to 35 hours per week. It’s like a full-time job for a young child,” she explains.
Parents can have a choice of center-based work where they and their children travel to another location to attend therapies, or some therapies are also offered at home. When children get older, the time they’ll also need to spend at school can be factored into the therapy schedule.
Insurance should cover autism therapies.
Medical costs are rightfully scary for any parent, but Chong reminds us that autism needs can be paid for with most insurance plans. “Autism therapies are mandated by all 50 states. Your insurance should cover it,” she says.
We can just check with our insurance providers to see what their policies are. After all, we’ll never know if we don’t ask.
Applied behavior analysis is a popular therapy option.
For parents seeking options for their children, they’re likely to be referred to ABA therapy, aka applied behavior analysis therapy. It’s considered by many to be the “gold standard for the treatment of autism,” according to Chong.
She says the goal is to have a qualified health professional work one-on-one with the child to positively reinforce and teach adaptive skills. A child may also start out in early intensive behavioral intervention, or EIBI, which applies similar principles as ABA for infants and young children, according to Chong.
Parents can receive support as well.
Parents may feel lost in the early days after their child gets an autism diagnosis. Fortunately, Chong says support and training is available for moms and dads as well. Many ABA programs, such as the ones at Little Leaves Behavioral Services, aim to “provide guidance to families on the way to … respond to these new behaviors that they may not have expected,” she explains.
Nobody has to go through this alone.
Don't wait until your child starts school to access support.
Chong cautions parents against waiting until their child is enrolled in school to seek support there. “[Schools are] there to provide educational support and teach the child. They are not there to mitigate, ameliorate, or work on any of the symptoms of autism. So it’s critical that they seek treatment specifically for autism spectrum disorder or the symptoms of autism.”
There are so many dedicated therapies available that can help a child succeed in school while getting the outside help they need.
It's probably worth explaining the child's diagnosis to the child.
Chong thinks it can be valuable for a kid to understand what’s going on. “There are many autistic adults out there that when they talk about receiving a diagnosis later or finding out about it, they’re almost relieved, because now they understand why things have been so hard and why they’ve needed to work harder on social relationships, interacting with people, understanding that their brain works a little bit differently.”
Kids are perceptive anyway, so sometimes honesty is the best policy.
Parents should carefully consider who to tell in the child's life.
When it comes to telling other people in the child’s life about the diagnosis, parents should consider how that person may interact with the youngster. As Chong says, “If the diagnosis is not shared, sometimes people make assumptions about the child’s challenging behaviors or some of the difficulties they experience and assume the child is just naughty or that they’re not listening or that they’re defiant when it could be better explained by the diagnosis.”
The psychologist acknowledges, however, that some people may use a diagnosis to “assume someone can’t do something and set the bar lower for them.” That means parents need to use their best judgement when it comes to who they tell and how they might respond.
With support, children can flourish like their peers.
Chong says “families can live high-quality lives and expect their child to do things that other children can. But the key is intensive early intervention.”
A diagnosis of autism spectrum disorder can be challenging, but it’s not world-ending for families. It’s really important that any nervous parent remembers that.
So much information exists.
The internet can be filled with a lot of medical misinformation, so Chong recommends parents access resources from well-known nonprofit organizations such as Autism Speaks or the Association for Science in Autism Treatment. As chief clinical officer for Little Leaves Behavioral Services, Chong can also recommend the information and resources provided on that website. And of course, consulting with the child’s doctor is always a good idea as well.
*Disclaimer: The advice on CafeMom.com is not a substitute for consultation with a medical professional or treatment for a specific condition. You should not use this information to diagnose or treat a health problem without consulting a qualified professional. Please contact your health-care provider with questions and concerns.
