My bookshelves attest to my worries. They hold book after book about parenting, about temperamental children, about children with sensory challenges, about raising boys, about how to get an accurate diagnosis for your child, about the importance of avoiding diagnostic labels for your child, and so on.
Today, in hindsight, I know this: I was wasting precious time on the wrong things. Instead of looking in books and online for clues about my preschooler, our youngest of two sons, I should have acted sooner, been more persistent with his pediatrician about my concerns, and called my county's Infants & Toddlers program. Ultimately, my son was diagnosed with an autism spectrum disorder, but he missed prime years for intervention — and I missed the support and education I could have received from Infants & Toddlers, which provides evaluation and services for young children who are experiencing developmental delays.
The Centers for Disease Control and Prevention recently released data showing that one in 68 U.S. children has an Autism Spectrum Disorder, with almost five times as many boys affected as girls. Data from Maryland show an even higher rate: one in 60 children, and one in 37 boys.
One of the most striking facts in the CDC report is that children with ASD are being diagnosed a few months before the age of 5 — more than 2 years later than the diagnosis can reasonably be made. Those lost two years make up a critical window when children's brains are most able to compensate for developmental delays if they receive quality services. I believe we can do better if parents have more information and encouragement from relatives, friends and child-care providers to act early on their concerns.
Prompt intervention can also prevent problem behaviors from becoming ingrained habits. In my son's case, we had to work hard when he was 4 and 5 to "un-do" habits related to his tantrums and rigidity. And these weren't only my son's habits. My husband and I had to learn to change our own behaviors so we could help him more effectively.
With our even-tempered older son, parenting was relatively easy. We read the child development books, followed common parenting advice and patted ourselves on the back, thinking his mild-mannered behavior was evidence that we were great parents.
The approaches that worked so well with Child No. 1 were simply no match for Child No. 2. We needed help, but it took us a couple of years of self-doubt and frustration before we found it.
To friends and relatives: Please be careful not to dismiss parents' concerns. Trying to make them feel better by telling them "just wait and see," "boys develop later than girls," "don't label your child," or "he'll grow out of it" can inhibit a family from finding out if there's really something to be concerned about.
A more negative form of dismissing parents' concerns happens when someone — a relative, acquaintance or even a stranger — misattributes a child's concerning behavior to poor parenting. Many parents whose children were later diagnosed with autism can recount instances where they were blamed for their child's tantrums, food selectivity, sleep difficulties or lack of potty training. These problems, which are extremely stressful for parents, are not evidence that the child has been spoiled.
So what can you do to help?
First, share information from the CDC's "Learn the Signs. Act Early" campaign, available at cdc.gov/ncbddd/actearly. The site has a downloadable checklist of developmental milestones; information on developmental screenings; tips to help friends, child-care workers, and physicians share concerns with parents; video-based online autism training for pediatricians; Spanish-language materials; and much more.
Second, armed with the appropriate information, speak to your pediatrician, who may refer you to a specialist. Maryland has a wealth of truly exceptional developmental pediatricians and behavioral specialists.
And third, you also can seek a no-cost evaluation from your school system's Infants & Toddlers office. You don't need a referral to make the call, and you don't have to wait until after your child has a diagnosis. You can make the call even while you are on a waiting list to see a developmental specialist.
Don't repeat my mistake. Err on the side of caution and act — the earlier the better.
Michelle Landrum, a former Sun editor, is a staff member at the Wendy Klag Center for Autism & Related Disorders at the Johns Hopkins Bloomberg School of Public Health. This article is written in a personal capacity and is independent of her affiliation with Johns Hopkins University. She is also co-chair of a Baltimore County committee on birth-to-5 services. Her email is firstname.lastname@example.org
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