Making Sense Of The Rise In Autism
Yesterday’s news was shocking: One in 88 kids has autism, a significant rise since The Center For Disease Control and Prevention started tracking those stats a decade ago. Parents everywhere wondered what to make of the report, and worried about missing a diagnosis.
For perspective, I reached out to two major autism experts:
Alison Tepper Singer is founder and president of the Autism Science Foundation, and the former executive vice president of Autism Speaks. A mom to a daughter with autism (and a sibling to a brother with autism), she has served on the federal Interagency Autism Coordinating Committee and appeared on Oprah, The Dr. Oz Show, NBC Nightly News and many other news programs to discuss autism.
Elizabeth Matheis, Ph.D., is a licensed clinical psychologist and certified school psychologist who specializes in autism and learning/behavioral disorders. She serves as a consultant for public and private schools, and is also in private practice. In addition, Dr. Matheis leads a mental health and support division at a premier school for children with autism or who have learning and behavioral challenges. She is also a consulting expert on autism for Parents.com.
Here are the helpful things both of them had to say.
Were you surprised by the news about the high rise in rates of autism over the past decade?
Dr. Matheis: No, I wasn’t really surprised because there have been great awareness-building efforts. Autism is no longer the ‘A’ word. More people are aware of Autism Spectrum Disorders (ASD) and the signs to look for. Pediatricians ask questions as part of their well visits during an infant’s first year to assess if certain skills or developmental milestones are lacking. There are many articles in magazines about the early warning signs and the role of Early Intervention. With that greater awareness, it makes sense that we are seeing a greater number of children being diagnosed with ASD.
Alison Singer: The numbers are alarming, because they’re not just numbers. These are real children with real needs. These are families that are exploding. We have to focus on building the infrastructure to provide education and services to all of these people and their families. And we need more diagnostic specificity. Autism can refer to a person with intellectual disability, aggressive, self-injurious behaviors and no language; or it can refer to a person with above-average IQ and intact language who has issues with socialization. It would be as if we only used the term “cancer” and didn’t distinguish between lung cancer, breast cancer or skin cancer. Clearly, the treatment for skin cancer is different than for breast cancer, and so too the treatment and service needs for a person with severe, classic autism are very different than for a person with Asperger’s syndrome. Unfortunately, the CDC data offers little information about the prevalence of the different subtypes of autism.
Many parents are, shall we say, freaked out by the news. There’s going to be growing anxiety among parents that their kids may have autism. What would you say to those parents?
Alison Singer: If you are concerned about your child’s development, don’t “wait and see.” Talk to your doctor. Learn the early warning signs of autism, which are posted on the Autism Science Foundation’s website. Most parents are familiar with physical milestones (when a baby should roll over, sit up, crawl) but parents also need to be familiar with developmental milestones, like when a baby should smile, respond to his/her name or show interest in other children. If your child does have a developmental delay or autism, Early Intervention can make a big difference.
Dr. Matheis: Parents also have the benefit and curse of the Internet, which is filled with credible and not-so-credible stories and articles. Parents need to make sure that the information they seek and hold to be true is from a reliable source. Personal stories need to evaluated and not taken as true at first glance. If you notice three or more of these signs, consult with a developmental pediatrician or pediatric neurologist for an evaluation, as well as your county’s Early Intervention office—just don’t let looking for signs interfere with the bonding loving, hugging and kissing of your sweet baby!
- Not pointing or sharing your attention at 9 months of age.
- Not interested in you or other family members.
- Has reached development milestones on time or earlier and then regressed between 15-18 months.
- Has very little or no language by age 2
- Is not responding to his/her name when called by mommy, daddy, or siblings
- Is not able to imitate
- Is not reacting or responding to you or others in an emotional way
- Is not engaging in pretend play
- Is not babbling or using gestures (like pointing) by age 1
What are your theories about the rise of autism in children?
Alison Singer: I think what we are seeing is a combination of more children being affected and also more children being detected with autism spectrum disorders. Some of the increase is due to better awareness and doctors getting better at diagnosing, and some is due to broadening the diagnostic criteria and including more people under the umbrella of “autism” than we had in the past. Additionally, we know that having a baby later in life, being an older mother or father, confers additional genetic risk. But studies show that all these factors taken together only account for part of the increase. We need more research to understand what is fueling the remainder of the increase.
Dr. Matheis: Additionally, women and men are exposed to all sorts of toxins, some of them in food, like pesticides and hormones. There is also a higher incidence of women using anti-anxiety and anti-depressants during pregnancy. In-utero babies are exposed to these types of chemicals that didn’t exist before. I also believe there is a genetic component to ASDs. Although the genetic marker hasn’t yet been isolated, it exists—we just haven’t found it yet.
What’s important for parents who have newly-diagnosed kids with autism to keep in mind about the condition?
Alison Singer: The message I constantly try to communicate through our work at the Autism Science Foundation is that our family members can learn and improve. The day your child is diagnosed is a new beginning. Your son or daughter will make progress in early intervention and will continue to make meaningful progress as they grow. The learning window does not magically close at age 5, 13 or 21. My brother who has autism, for example, wasn’t toilet trained until he was in his thirties, but now is able to participate in a program delivering Meals on Wheels to homebound senior citizens. He is a contributing member of our community, but he wouldn’t have had that opportunity if we had given up on teaching him new skills. Likewise, my daughter Jodie is doing things now that we never would have expected. It took six years to teach her to ride a bike, but now she’s can do it and we are able to ride bikes together as a family. In short, it gets better. Also, talk to other families with children who have autism who live in your school district. They are a great source of information and can save you a lot of time figuring out the system. Learn from their experience; I promise you they will be eager to share.
Dr. Matheis: ASD looks different for almost every child. It is a neurological disorder that manifests itself differently, so just because a parent may have a friend or coworker with a child with autism, don’t let this be your reference point. Your child has strengths and weaknesses, just like every other child, and it is helpful to know what those strengths are so you can begin to build those areas of weakness. Also know that your child loves you and wants you, even if your child cannot tell you verbally, or if you think that your child “doesn’t care.” You are your child’s best and most passionate advocate out there, so educate yourself and know when to turn off the light and go to bed.
What do you think people fail to understand about autism?
Dr. Matheis: Many parents look for a “cure” or a way to fix autism. There is no pill or treatment that will make autism go away. However, there are many treatments available that can improve functioning. Many children with ASD go on to pursue a college education, hold a job, get married and have their own families. The variability in functioning is wide, so get to know your child’s aspirations for the future and help him/her to reach those goals—whatever they may be.
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Tags: 1 in 88 kids has autism, autism, health, How to tell if a child has autism, rise of autism in kids, warning signs of autism | Categories: Autism, Cerebral Palsy, Children With Special Needs, Disability, Down Syndrome, Must Read, SPD, Special Needs, Special Needs Parenting, To The Max