We Fear the Unknown: Autism Awareness
You carry a child for 9 months which includes all the excitement of ultrasounds, gender reveals, buying furniture for a nursery, decorating the nursery, buying adorable onesies and baby showers. For most families this period of time is unparalleled. As the big day approaches the anticipation mounts, each kick and movement marks the end of a long journey when the baby is safely in our arms and we get to gaze upon that face we've dreamt of and imagined. Labor Day is often a glorious day.
As the first year progresses, we diligently take our infants to the pediatrician for checkups. Marking each milestone in our scrap books, celebrating each ounce gained, and each inch that they grow. If your baby sits up with back support you celebrate, if your baby rolls you cheer, those first bubble razzing sounds are musical.
However for some families, each of these visits to the doctor becomes an encounter with their deeply suppressed fears or anxiety. For some mothers and fathers, the months bring to light real concerns and more questions about their child’s development. “Why isn't our baby doing what other baby's do?” Once their child has crossed over into the toddler stage, the differences that were perhaps more subtle become more apparent and the family is left feeling scared, puzzled, and confused.
As a pediatrician this is the journey I have shared with many of my patient families. When we walk this difficult road together from the onset and my families are plugged we face this head on together. In fact, in some children the signs that there could be delays or concerns may be appreciated as early as 6-9 months of age based on very skilled assessment. For the families who have not connected well with a pediatrician or other physician perhaps because of moving a lot, not finding a good fit, or any other array of reasons, I find the first point of encounter when we make the evaluation referrals challenging for both sides. These parents often come to me with a history of fears, failed expectations, frustration sometimes with the healthcare system, and lack of answers.
What is Autism?
It's important for us to define what Autism is. I find that many parents are afraid when their child deviates from a perceived "norm" because of all the fear that exists about Autism. Developmental milestones are based on ranges, and some children may achieve tasks later than others, while still within normal range. However, the art of evaluating milestone development is recognizing what is not within normal range. According to the Diagnostic and Statistical Manual of Mental Disorders 5th edition (DSM-V) a tool used by psychologists and psychiatrists to diagnose Autism, Autistic Spectrum Disorder encompasses are range of behavioral, social, motor, and cognitive challenges that range from mild to severe. These behaviors include, persistent deficits in social communication and interactions across multiple contexts. These include challenges with social emotional reciprocity, non-verbal communication deficits, restrictive and repetitive patterns of behavior or interests with several specific criteria needing to be met. The symptoms must present early in development, they must cause clinically significant impairment in functioning. The challenges must not be better explained by other diagnosis. So you can see the spectrum of Autism is complicated to diagnose.
Here are 3 things this pediatrician wants you to know about developmental delay and Autism in the month of Autism Awareness.
1. Vaccines do not cause Autism. Many of us in medicine have decided to take this issue head on while others may shy away from the conversation or avoid it like the plaque. There is so much emotion and controversy embroiled in the issue of vaccines and Autism that the topic has become a literal standoff between physicians and some patients. The data and evidence do not support vaccines causing Autism. The challenge is we are still determining what does. Paternal age, environmental factors, genetics, are all being considered as causes. Stay connected, stay informed, ask questions, encourage validated research on this important issue.
2. Austism does not reflect parent failure. Through the assessment processes particularly in the early stages, parents are often shrouded in guilt when they come to terms with this diagnosis. I have consoled mothers and fathers who berate themselves feeling as if they caused this. I have seen families torn apparent with finger pointing and accusations about behavior that may have caused the child to be Autistic. This is not a parental failure issue. You have not failed as a parent. You will not fail your child with the right support and services.
3. Delay and denial are not our friends. While there is no cure for Autism, early intervention helps the prognosis significantly. Time does not cure this, but therapies when started earlier for speech, language, physical therapy or occupational therapy can make a difference for many children. I try to encourage parents to seek these services out EARLY as they come to terms with the potential diagnosis, seek second opinions, and make peace with the term. Just remember that brain development occurs rapidly in young children, so we have a capacity to intervene and help with therapies that are initiated early. Time is not always on our side.
The debate continues, is Autism on the rise or do we just have better diagnostic tests and criteria to pick up cases. Regardless of this academic discussion, the experience of Autism is real and unique to each family. Let's encourage support, continue pushing for research and answers, and remember the unique story of each and every child.