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Eleven years ago I took my 3-year-old son for a check-up. Halfway through the appointment he began to spin in a circle. Concerned, the doctor proceeded to take me through a list of symptoms that would indicate autism.
“Does he like to clean things more than he likes to play with them?”
“Does he push you away if you try to hug him?”
“Does he refuse to speak?”
I breathed a sigh of relief and happily explained that my messy, affectionate, talkative son did not meet any of his criteria for autism.
Six months later, we were back at the office again, this time for an appointment with a different pediatrician. I had spent the last several months watching my son carefully, deconstructing his behaviors and researching autism online.
What followed was a six-month whirlwind of psychologists, psychiatrists, speech therapists, behavioral therapists, occupational therapists, educators and pediatric specialists.
Ten years after our son received an official diagnosis of autism, I think back to those early days and wish I could start all over. If I could, I would teach myself a few important lessons.
1. Don’t let conflicting information discourage you from listening.
One of the first things I learned during the diagnosing process was that few people were on the same page. Many of the medical professionals disagreed at first, but we eventually received an official autism diagnosis from a psychologist. We then had to jump through a dozen hoops to get the school to agree with the medical diagnosis. We’ve also often had to play mediator between educators and therapists who disagreed on treatment options.
It was easy to get discouraged in the beginning. If the professionals couldn’t agree with each other, how were we supposed to know what advice to follow? If I could do it over again, I would have confronted the discrepancies at the beginning instead of wasting time letting our son be pulled in different directions. We got on the right path eventually, but it was a long road.
2. Not everything deemed a “symptom” has to be treated.
We spent years listening to therapists, experts and well-meaning people tell us everything that needed to be changed about our son. There were times we agreed with them. For example, our son has always lacked a genuine understanding of safety. He won’t hesitate to wander off or jump in a pool or climb onto a roof if he is not supervised. Proper safety is something we will always strive to teach him.
However, I see no reason to force him to conform to a so-called acceptable behavior just because it’s what other people think he should do. As parents, we try to treat the behaviors that, untreated, pose a risk to him or others. We found a lot more joy in our daily lives when we learned to embrace his individuality and focus our therapeutic efforts on the truly serious behaviors.
3. There is a learning curve, it just looks a little different.
One of the most difficult lessons for us to learn was that our son is capable of much more than we first imagined. We were those parents who checked off every developmental milestone with a grin of satisfaction. After the diagnosis, we shifted our expectations too far in the opposite direction. We found ourselves celebrating minor skills that came easily to him, and not challenging him enough in others.
What we know now is that he is very capable of learning. Maybe not at the same speed, or with the same enthusiasm as other kids his age, but he can still reach the goal if given the proper encouragement and patience.
4. Comparisons can be a slippery slope.
One of the first things I did once our son had his diagnosis was to start comparing. I compared types of symptoms, severity of symptoms, stimming behaviors and treatments. Every time a mother in our support group bemoaned her child’s unwillingness to eat fruit, I celebrated my son’s love of apples and grapes. Every time a parent detailed his child’s accomplishments in social settings, I found myself feeling embarrassed that my son couldn’t make it through the store without a meltdown.
Eventually I realized that it’s called an autism spectrum disorder for a reason. Every child can be celebrated for his accomplishments and sympathized with for his struggles. Likewise, every family is different, and nothing good can come from forcing yourself, or your child, into a specific mold just because it worked for someone else. These days I enjoy hearing about other families and the strategies they use to navigate autism. Sometimes we incorporate those ideas into what we do. Other times I applaud what works for another family but realize it won’t work for mine, and that’s okay too.
5. Don’t lose yourself in the world of autism.
It’s very easy to become obsessed with autism when your child receives a diagnosis. I checked out and purchased books by the dozens. I spent countless hours browsing websites, filling out notebooks, chatting on message boards and preparing for therapy appointments.
At one point our son was attending school for half a day, participating in a 40-hours-a-week ABA home therapy program and attending speech therapy outside the home. We lived and breathed research, therapeutic techniques, diet struggles, vitamin supplements, schedules and support groups. We felt that if we threw enough information and therapy at the “problem” of autism, our story would have a happy ending. It took a few years for us to realize that obsession was doing our family more harm than good. Finding balance is difficult, but making a conscious decision to seek it every day makes a profound impact in the long run.
An autism diagnosis can be both scary and overwhelming, but it doesn’t need to stay that way. Listen to people you trust, and find a plan that works best for your child and your family.