Advice for Parents Concerned About Autism
From BBRF's Brain & Behavior Magazine - July 2019 Issue
Dr. Klin, what advice would you give to parents concerned about autism in children under the age of 3? What is an intelligent course of action?
According to a report from the Centers for Disease Control and Prevention (CDC), the time between a parent's first concerns and the time that they gain access to an expert clinician takes, on average, 3.5 years. So, my first piece of advice for parents is to trust themselves. If you have a concern, start by talking to your primary care physician. Your primary care physician is the gatekeeper for your child's health. Engage.
Now, primary care doctors are often concerned about worrying the parents. Doctors are often concerned about access to treatment and whether the treatment is beneficial. So, parents should know that primary care physicians often adopt a wait-and-see approach, which basically means a delay in the diagnosis. However, parents need to advocate for their child. In cases where the parents are concerned but the primary care doctor suggests waiting, I would recommend they take their child to a clinician who is an expert in the development of speech, language, and communication, and has some awareness of autism.
So, you encourage parents not to ignore their own concerns.
Trust your instincts and pursue them until you are reassured otherwise. Do not accept old notions like, “Boys [begin to] speak late” or “This is just a temporary phase” that your child is going through. Or, “Let's wait another year; let's wait and see.” All of those things may alleviate the parents' anxiety, but they also delay action. I'd rather have a parent becoming more anxious early on, and then being reassured by the child's positive development, than somehow being falsely reassured only to then see their child, years later, developing ASD symptoms.
What are some of the very first signs and symptoms of autism?
By far, parents will tell you the most common sign is delays in speech and language. In fact, however, the most robust signs of autism have to do with nonverbal communication. The little gestures that babies make in response to others are the most robust predictors of autism because they can indicate a breakdown in communication. FirstWordsProject.com, for example, has a list of 16 nonverbal gestures that babies should be showing by the age of 16 months. Other signs have to do with playing the games that we all play with babies. For example, Peek-a-boo. Is the baby engaged by you? Is the baby engaged with objects? Is the baby seeking more interaction with objects than with people? Other clues can come from things that we do with babies that are reciprocal, for example, vocalizing back and forth. Is the baby responsive to the adult's interaction?
Is there some kind of screening test that parents can take?
When a child is at least 12 months old, a parent can complete a screen online that is going to deliver that result directly to the baby's primary care physician. Let me mention again the fabulous website, FirstWordsProject. com, which has a built-in screener that parents can complete online. And if the screening is positive, the parent can actually enroll in the program that is going to connect them directly to their physician and services.
What are some other resources that parents can use?
There are ready-made packages that parents can access, whether it is the Autism Speaks 100-day package, or whether it is FirstWordsProject.com. Through these they can learn everything that they ever wanted to know online, so that they are empowered to seek services for their own children. The most important thing that parents can do is to learn and be aware of and gain access to the many resources that can help them navigate what is going to be a labyrinth of services.
Are you saying that not only does FirstWordsProject. com help parents identify the potential for autism but also helps connect them to resources?
We use the resources of both FirstWordsProject.com and AutismNavigator.com to create an electronic communication system that brings together the family, the primary care physician, and the early intervention provider, all within one communication system, so that communications don't break down, and parents can go more easily from one point of care to the next point of care. These websites also provide training modules tailored to parents, primary care physicians, and early intervention providers. The modules are customized because we need the early intervention providers to be cognizant in delivering treatment. We need the primary care physicians to recognize the early signs of autism, and we need the parents to navigate the system.
Please explain how genes and environment interact when it comes to autism.
There are hundreds and hundreds of protein-encoding genes that have so far been associated with autism. So, let’s start from a science standpoint, and assume that children are born with genetic liabilities. Whether or not those genetic liabilities translate into disabilities is something that I believe very much is within our power to influence, through our actions. It's our responsibility. There is a reason why it takes so much time for babies to mature, and the reason is that so much of early brain development requires experiences. The way the brain develops is not fully “programmed” or predetermined. It involves interaction of the individual with their surroundings, “the environment.”
One thing that you make a point of suggesting is that we—parents, caregivers, teachers, family physicians—can absolutely affect outcomes in many instances. This is not something that one often hears about autism.
Autism in this day and age is no longer a doomsday diagnosis. It is within our power, and it's both our responsibility and determination as a community to ensure that children are afforded what they need in order to fulfill their promise. It's a partnership. It's a partnership that, both in the past, in the present, and in the future, is always going to be guided by parents, because parents are always concerned about their children's wellbeing.
What would you say to parents who are going through this difficult time?
I borrow the title of a book by my close friend [Dr.] Barry Prizant when I say that our children with autism are “uniquely human.” According to CDC prevalence rates, 36% of 8-year-olds with autism have intellectual disability. The rest do not. That does not mean that they don't have challenges. But what it does mean is that we can substantially and meaningfully improve their lives and ensure that they make a very meaningful contribution to society.
Temple Grandin, who is famous for talking about autism in her life, says the world needs all kinds of minds. She actually attributed her own success to her autism and the fact that she thought so differently than people who have a so-called “typical” brain.
Well, we run a very competitive fellowship here in neuroscience at the Marcus Autism Center. This year we had 98 candidates, of whom we selected two. One of them comes from Carnegie- Mellon University, speaks four languages and can program computers in seven. She is going to be working with us on a large computational project on gene expression. And she is a woman with autism. v
Ami Klin, Ph.D.
Emory University School of Medicine
2018 Ruane Prizewinner for Outstanding Achievement in Child & Adolescent Psychiatry Research
— Written By Fatima Bhojani