April is Autism Awareness Month, and we all know it's out there, but what if it's right here in your family? Would you know what to look for? How early is too early to be concerned and how do you talk to your child's pediatrician about your concerns without seeming like a neurotic internet-browsing parent?
HNGN spoke to Clara Lajonchere, Ph.D., the chief scientific officer at Cognoa, "a consumer health care company that's changing how parents assess and support their child's development" about signs of autism, Early Intervention benefits, ASD myths and a new app that can help parents not just evaluate autism risk, but also learn how to adapt and grow with an autistic child.
Lajonchere, the former vice-president of clinical programs for Autism Speaks, focused on genetics for 25 years and has zeroed in on autism and other developmental disorders for about 14 years. She explained to HNGN how Cognoa can screen, validate, triage and make use of "precious developmental windows" by bringing parents closer to experts such as language and speech pathologists. "We are not replacing doctors," Lajonchere said. "We don't provide diagnoses. What we do is we're empowering parents, validating concerns. A lot of parents go to their doctors, and the doctors are ignoring their concerns, so [the parents] come to Cognoa and we give parents peace of mind."
With so much publicity for the "anti-vax" movement and its opponents, Lajonchere encourages parents to sift through the myths and fears in order to be the best advocates for their children. Rather than focusing on what could have been, Lajonchere said she believes "kids need help today" and that society has a responsibility to get children "back on track."
(Be sure to check out the exclusive audio following the Q&A to hear all about Cognoa's app and how you can try it for free!)
When do children start exhibiting signs of autism spectrum disorder (ASD)?
Overall, parents should be making sure that their children are meeting their developmental milestones, and as far as autism is concerned, the research now shows that you can detect autism in kids as early as 12 months. Most people aren't diagnosing kids early ... The parents need to understand the signs. The kids that have a more severe form of autism that is evident early on, parents can tell. Typically, most parents start to be concerned around 24 months, because at 24 months, kids are supposed to be developing language, and most kids with certain kinds of delays - language is one of the biggest delays parents notice. Other things parents notice: [autistic children] don't respond to their names, or the way they play with their toys is just very different from the way other kids play with their toys. ... Early Intervention is the one thing that really has demonstrated to have the best outcome. Identifying kids as early as possible is really critical, because you don't want to risk losing that window when it could potentially help the most.
Is autism on the rise, or are we just more aware of it now?
The Centers for Disease Control and Prevention just said the autism rates are holding steady now, and there are different reasons for that depending on the different ways you're measuring it. I think we're getting better at measuring it ... in schools and in primary care, people are starting to become much more aware of the signs. Parents are also much more aware of developmental milestones. It's not something that can be answered easily, and over the years, the way we diagnose has changed, the criteria has changed. ... But the Centers for Disease Control recently came out with a large study saying rates are holding steady. Although the rates are higher now than they were a decade ago.
The anti-vaccine movement has hung its hat on a study that has since been debunked.
So, if avoiding something like a vaccine won't stop autism, are there any preventative measures parents can take? What contributes to autism?
We know that there are certain things and certain factors that may increase risk. Honestly, good prenatal care... I'm not sure I can say, "Do this to prevent autism and have a healthy child." So, when you are pregnant, you want to do all the right things, and the goal is to have a healthy child. There is no way to prepare differently before that diagnosis. I think it is most important that parents understand what developmental milestones need to happen. When I hear a parent say to me, "Oh, my child is 4, and he still only has two or three words," well, that's a little late. Most parents in this day and age are very educated on what their kids should be doing. There are so many baby apps telling you, "by now, your child should have X, Y and Z words," or "should be running or skipping or holding a pencil." If the parents think that there is something off, investigate it a little further. Talk to a pediatrician about it.
Autism is being treated very differently today than it was years ago. What in our understanding changed?
Some people used to think autism was a death sentence, but it's very much not a death sentence, and that is doing the community a disservice. That's why I'm such a proponent of Early Intervention, because I've seen kids who didn't talk - that had no way to communicate - develop language and go on to live very meaningful and productive lives.
Autism isn't diagnosed with a blood test or X-ray or brain scan. That seems like it would be scary for parents.
That's exactly right.
And part of the challenge is that it is diagnosed behaviorally, as opposed to diabetes ... where you can look at a blood test. The important thing to remember is no two kids who have autism will have the same symptoms or behavior profile. Even among identical twins, both of whom may have autism, will look and behave differently from each other. That's what makes autism hard. We have some of the smartest researchers, but it's really complicated. If it were caused by a single gene or single defect, all kids would look and behave the same way, but they don't.
When most people see the word "autism," they might think of a non-verbal individual who is frustrated and flailing their arms, hitting themselves or others, but autism has different "shades" on the spectrum, right?
Yes. It's all about social communication. How you relate to other people. That really is at the core of what's going on with kids with autism. How they communicate, can they have conversations that are reciprocal - that are back-and-forth and flow easily - or do they get stuck in a groove. That really is one of the primary areas of concern, but there other symptoms can go from milder to the kids who are nonverbal and have to rely on [technology] ... but even for those kids that have no language at all is one reason they use speech generated devices so that they can communicate
There is a misconception that a lot of these kids don't have language or that they are dumb or they don't get what's going on. For a handful of them, that is true, but I know many, many with autism who have never had language and have incredibly high IQs. In the early days, people didn't know how to measure these kids, so they'd give them these tests that they couldn't do, but it doesn't mean they're not smart.
Any other myths about autism we haven't covered?
There are certain myths 0about autism that people think, whether it's caused by bad parenting or [that] individuals with autism don't feel emotion. Neither of those things is true. Some people think, "Oh my gosh! You can tell someone has got autism by looking at them," but actually that's not true. Ironically enough, I've seen plenty of kids who, when you look at them, look like perfectly regular 2-, 3-, 4-, 5-year olds. You'd never know they have autism until you start to interact with them.
There are other myths out there like the notion that vaccines cause autism. That's not necessarily true. Autism is not contagious. That's when people say, "Can you catch autism?" No you can't. It's neuro-developmental, so it affects the wiring in the brain and the nervous system, and it's not something you can "catch."
I've heard other myths that autism only affects white people, and that certainly is not true. There are many studies across the world that show the rates of autism are similar to those in the United States. I think the issue with minorities is the aspect of care, health system disparities. It doesn't mean they don't have autism like Caucasians; it's just that there are other barriers to accessing health care.
It's more socio-economic than racial.
That's exactly right
What is your message? What is the most important thing to you?
The most important thing for me for parents to know is to really learn the signs and act early. Pay attention; understand the neurological and developmental milestones. Parents, if they want peace of mind, they can come to Cognoa, but they also have to be careful. You don't want to pathologize behavior that is just typical toddler development. Kids are going to be kids, and if a parent really and truly feels that something isn't right, then I want to empower those parents to talk to their pediatricians and health care providers, because I feel very strongly that Early Intervention can help kids stay on track.
And the kids don't have to have autism. If kids aren't meeting the developmental milestones, there are many things that parents can do to help them get on track and often times, it's the things the parents do in the home that end up being the most important and the most valuable because if the child is receiving therapy, the parent in the home can reinforce all the learning that the child got.
To learn more about Cognoa's new app, listen to what Lajonchere has to say about the program that she says gives "parents peace of mind."