Autism. By the time the topic comes up you are already behind the eight-ball looking at a learning curve that does not crest. If you are lucky you have time to grieve. Most, however, are forced to jump into the deep end of the ocean with little more than prayers they will find land. The easiest way to get out from behind the ball is to never get there in the first place. Early detection is the key to achieving the best outcome and developmental milestones are key to early detection.
Our Initial Referral
Our boys are twins. There were born three years after our daughter and several weeks before their due date. It wasn’t too much of a concern though. They came home after ten days in the NICU learning to navigate bottle feeding. Initially, we were exhausted by dealing with the complications of a premature birth. This gave way to the added demands of juggling their care and feeding. Then just about the time when most twin parents begin to see a light at the end of the tunnel we were referred for evaluation. Our answers on the Modified Checklist for Autism in Toddlers or M-CHAT weren’t adding up. So we began the assessment process with a Developmental Pediatrician. You can learn more about our experience here.
Prior to the pediatrician making a point of it we had not considered the importance of developmental milestones. Our daughter had basically done her own thing and come out fine. We figured that’s how babies worked. You love them, keep them safe and dry and they grow up happy. We now know how extremely naive we were. We did not understand that developmental milestones are key to early detection for many childhood concerns. The idea just wasn’t even on our radar.
That said, having a better idea would not have changed much of anything. The earlier the disorder is diagnosed the better, but a later diagnosis is not fatal. Please do not misinterpret what I am saying and use it to form a new bullet point under the guilt column. Being the parent of a child with Autism will provide many other opportunities to question your abilities and feel guilty about your choices. As imperfect parents, otherwise known as human beings, we are lucky that there is nothing you can do between birth and diagnosis that will change this eventuality.
First and foremost, if you are looking at an Autism diagnosis you see a child with Autism: it was going to happen regardless and it is not your fault. Due to the nature of the diagnosis there needs to be a certain amount of chronological development, growing time, before a child can be identified using current assessment tools. Also, the predominant factor in being diagnosed with Autism is born of a child’s nature and once they are born there is little anyone can do to change that. How a child is nurtured affects the outcome for many children with Autism, but it doesn’t control the onset. Except in the most esoteric of arguments there is simply no basis in fact that a parent’s actions can cause there child to be diagnosed with Autism.
This is important. When Autism was first recognized as a unique set of psychological symptoms it was lumped in with schizophrenia. Later nuances in the symptom pattern were found and it was given its own diagnostic category. Early researcher then believed Autism developed in children who had mothers that was emotionally “cold” or unavailable. They called them “refrigerator mothers” and boldly stated that if the mothers were more loving the child would not have developed Autism. This theory was eventually debunked and we find ourselves back at square one with diagnostic criteria that identify 1 in 54 children with Autism Spectrum Disorder without a causal link. For most families with children on the spectrum this is irrelevant. You get the diagnosis, you mourn the vision you had of your child’s future and make peace with your current circumstance. Your number one priority is working out what you can do about it not why it happened.
Our family was extremely lucky. I was on active duty in the U.S. Army and, if nothing else, routine medical care is rigidly scheduled. At the boys’ 18-month wellness appointment the pediatrician asked the standard questions about when they did certain “baby” things. Our answers were unsatisfactory and we were referred to the specialists to dig deeper. We were so clueless that we didn’t even understand the significance of the referral. We did not understand how important early childhood development is or that knowing where a child falls within the range of typical behavior for developmental milestones is the key to early detection.
Making an Autism diagnosis is not easy. Much of the true diagnostic criteria is too sophisticated for an 18-month-old to exhibit. There were enough deficits in the boys behavior for them to receive the typical initial label of PDD-NOS, Pervasive Developmental Disorder – Not Otherwise Specified. The boys were picked up in the “system” at this point. In Northern Virginia, that system is “Child Find.” Each state has their own version of preschool support under the Individuals with Disabilities Education Act, IDEA. We went through the screening process, developed an Individual Family Service Plan and began receiving developmental services in our home until the boys were old enough to go to our local public school and receive an IEP, Individualized Education Program.
At the time we received that initial diagnosis 18 months was the earliest you could get an Autism “label” and begin to access services. We feel blessed that our boys were identified so young because early detection was key to getting them services as quickly as possible and we see a marked improvement in our boys as a result. Today Autism can be identified in children as young as 12 months old. Where it is true there is nothing we know of at present that you can do as a parent to avoid Autism there is much you can do that will lessen the severity of the condition. It is truly a case where, as parents, we must suck it up and get over ourselves, so our children can move on. Don’t get stuck in the loop of when your child was diagnosed and do everything you can today with the knowledge you have to make the most of your circumstance.
Early intervention is such a game changer for individuals on the spectrum that most of Autism research addresses detection and early intervention. The sooner you begin working with a kid on the spectrum the sooner you begin giving them the tools to bridge the gap between where they are and where they need to be. Do not fall into the mistaken belief that by accepting the diagnosis you have to accept a lesser outcome for a child affected by the disorder. They are just as bright and capable of learning in most instances as their neurotypical peers. They just learn things differently and more attention needs to be paid to filling in knowledge gaps across the span of things they were able to learn on their own. You cannot “learn away” Autism, but you can lessen the severity of the condition and help a child reach their fullest potential.
As a parent of a child with Autism these are your initial goals:
- Recognize the issue as early as possible.
- Get the issue appropriately labelled.
- Secure the services that label entitles you to.
- Dig in and work the issue.
To that end, my first and greatest piece of advice is to know the developmental milestones of typically developing children and to monitor them in your children before there is the potential of an issue. In this way you will be forearmed and in the best position to respond as quickly as possible if the need arises. This is so important there is an app for that. You may laugh, but the CDC developed a milestone tracking app that identifies the milestones a child should achieve from birth to five years of age. There are examples of what to look for and tips on how to encourage children to thrive, as well as advice on when to seek professional assistance. If you are a parent of preschool aged child get the app. If you know someone who has preschool aged children or is expecting pass along the brochure and encourage them to get the app. It is truly the simplest way of ensuring the earliest possible detection of a disorder that has come to impact 1 in 54 children. Developmental milestones are the key to early detection and early detection is the key to the best possible outcome.