By Christine Denise
Autism Mom and Contributing Writer for As You Are, a virtual clinic dramatically increasing access to early autism diagnostic services through the use of exclusively telehealth appointments
When it was our turn to have our son evaluated for an autism diagnosis, the pandemic had just begun. Doctors’ offices were canceling appointments left and right. We were holding our breath that the appointment we had waited months to get for an evaluation would end up getting postponed.
More months would pass. Access to autism services would pass. The potential for progress would pass. Then, the pediatrician asked if we could do the appointment virtually. We jumped at the chance, eager to have the appointment rather than continue the wait for an evaluation. Admittedly though, we were a bit concerned that our son would not have a traditional evaluation.
What if she missed one of his behaviors because it was off-screen? What if she didn’t hear him? Or see everything he was doing? Instead, it turned out to be one of the better experiences we’ve had. The doctor that day got the best view of our son than any other doctor, therapist or evaluator who has ever worked with him. And here are a few reasons why:
1. Natural environment
One of the biggest advantages of the virtual appointment was the doctor got to observe our son in his natural environment. At home – the space where he is most comfortable and most likely to be himself. There were no new humans to awkwardly interact with and cause him to lose focus on displaying his typical behaviors. No new sterile space to react to. No new and unfamiliar sounds, smells or sights to process.
The session allowed the doctor to actually see our son and not just get to know him through the words we use to describe him. We realized after the experience how much it meant for her to really not interact with our son or us much and just strictly observe him try to do the tasks she asked with the objects he is used to using.
When she wanted him to try to color, we gave him the markers he is used to at home – not a new set of markers in an unfamiliar place that he would likely spend his time examining or throwing because he didn’t like them. She got to see how he ate and reacted to certain textures we gave him at the table where he is used to eating, not at a table where he’s never sat. Taking an autistic child like our son out of their natural environment alters their behavior significantly, so we felt confident this doctor actually got to know him in order to make a very educated diagnosis even though we feared it wouldn’t.
2. One less hassle
Every time I take our son to a doctor’s appointment, and my husband can’t go, my level of anxiety rises. The hassle begins with interrupting my son’s typical daily routine. Getting him into the car and going somewhere he is not expecting – a task that can be overwhelming for autistic children who thrive on structure and routine.
Then comes the front desks, getting visitor passes, checking in – all are experiences that for typical children and their families aren’t even considered as part of the journey to a doctor’s appointment. For me, it can be a lot. The entire time I’m worried my son is going to bolt from me as I’m struggling to sign the seemingly 1,000 pages of permission slips, insurance forms, getting name tags that he will fight me to wear, getting our temperatures taken, being asked to make him wear a mask he won’t wear and then having to explain why to usually unsympathetic ears.
Then, there’s the wait in the waiting room, where my son will inevitably want to explore and do something inappropriate while I’m still trying to fill out all those forms. Then, there’s the wait inside the exam room where there’s absolutely nothing to do to keep an autistic mind calm. Then, there’s the meeting with the doctor, which is also stressful because I’m so focused on my son and what he is doing – or not doing – that I can easily miss what the doctor is telling me, especially if my son is crying or trying to get out of the room. Virtual appointments eliminate all of that stress. This is kind of similar to the first point in that taking an autistic child out of their natural environment or typical schedule can be a huge undertaking for some families. Any disruption to routine and familiar places is much too overwhelming for some kiddos, and, in turn, their parents. The level of anxiety for the caregivers of autistic children rises with every trip outside the norm, and doctor’s offices and appointments can be among some of the dreaded outings. Eliminating that from the equation can lead to better outcomes and care.
3. Different opinions
Anytime I can tell a doctor about my son, I do. I have wanted as many medical opinions about him as possible, from as many specialists who have seen kiddos like him. All I really know is him. And before him, I didn’t know anyone like him.
Having the ability to get opinions from doctors and experts across the country who know other kiddos like him is an incredible opportunity for families with autistic children, and you don’t have to take them across the country or even leave the comfort of your home to do it.
I often wonder about how families who have less access to resources due to socioeconomic status make it with their autistic children. How does someone who doesn’t have access to transportation make it to a doctor’s appointment? How does someone who works multiple low paying jobs take time off work to take their child to an appointment? I believe virtual appointments will help bridge this gap for lower income families, when they can meet with doctors simply by having a virtual conversation with them using cellphones. It will eliminate the transportation issue and offer flexibility with work schedules. The same can be said for financially stable families. Eliminating the need to take time off from work, get your child out of school or daycare for an appointment is a great advantage, especially for so many of those who now work from home permanently.
Not getting to see and ride his big yellow school bus every morning is a real challenge for our son. If ever I have to drive him to school, he clings to me for dear life even though he knows he will come home in just a few hours and see all of us again. When the school bus comes, however, he’s running out the door.
He can’t wait to see it. It’s one of those many little nuances of his day that throws everything off if he can’t experience it as expected. On days where we have doctor’s appointments, our son doesn’t get to ride his bus. That’s because we have found convenient appointment times are another hurdle to caring for our son. We’ve learned to make our appointments as early as possible because doctors are usually not running behind at the beginning of the day versus the afternoons or lunchtimes.
Again, that means a pretty major disruption to what our son is used to. With virtual appointments, families like ours can schedule appointments when it’s most convenient for us and for the doctors.
Do you have questions about your child’s development? The team at As You Are provides useful autism screening and diagnostic evaluations for kids 16 months to 10 years old via telehealth appointments.
Disclaimer: I am not a medical professional. This is a sponsored blog post, but all opinions are my own.