When the COVID-19 pandemic began, many doctors and other providers adapted to a telehealth model to provide care. Even as in-person treatment options are again becoming widely available, telehealth still offers unique benefits for autistic children and their families when receiving medical care and/or autism services.
Those benefits include:
- Increased access to care (including more specialized care), especially for families living in underserved areas.
- More timely and frequent treatment.
- Increased support to families to continue care and ongoing treatment between clinic visits.
- In the context of autism-specific services, such as ABA, opportunities for providers to remotely monitor generalization of skills.
Telehealth employs technology to deliver healthcare at a distance. A telehealth appointment entails any situation in which someone is receiving medical care or treatment through videoconferencing software. Telehealth meetings vary based on a number of factors. For example, an appointment with a pediatrician will look different from a session with an ABA provider or occupational therapist. Telehealth sessions will involve a doctor or other provider who participates remotely, as well as you and/or your child, depending on the type of session and the child’s needs.
In order to learn more about telehealth and its benefits, OAR reached out to two experts who are applying telehealth to autism. Joy Pollard, Ph.D., BCBA-D, is the co-founder and CEO of clinical operations at Behavior Change Institute. In that role, Dr. Pollard has pioneered telehealth ABA services for families in New Mexico. Ron Oberleitner is the CEO of Behavior Imaging, a company that is innovating diagnosis and service delivery via telehealth to improve autism care. They and their colleagues provided these tips to help families make the most of their autistic children’s telehealth appointments.
Preparing for Your Appointment
A successful telehealth appointment begins with preparation. Before a telehealth appointment, parents and caregivers should connect with their child’s doctor or provider, prepare the telehealth environment, and make sure their child is set up for success.
- Talk to the provider.
- If you are beginning what will be a series of appointments or ongoing treatment, learn how the provider uses telehealth in its treatment protocol, including what kinds of telehealth services they offer. Establish the schedule and communication protocol in advance. Make sure you are agreeing to a plan that works for your child and you.
- Discuss what will happen in the session, what materials you will need to have readily available, and what role you will play, if any.
- Prepare for the appointment and test your technology.
- Decide on the best place for the appointment in your home. If your child is able, include them in this decision. The space should be quiet, private, and well-lit.
- Organize any materials that the provider requested for use during the appointment and/or any notes you want to discuss with the provider.
- When you set up your technological devices, check to ensure that the cameras are positioned in a way that you and/or your child will be visible.
- Keep in mind that different types of telehealth visits may require you to set up your devices differently. For example, an appointment that is more focused on parent coaching may require you to position the technology differently than you would for an appointment more focused on observing or providing direct services to your child.
- If the provider does not send you instructions about where and how to position your devices, you can ask them how they would like the environment set up.
- Take steps to prevent technical difficulties.
- In order to increase visibility, use as large a screen as possible. Try to avoid using devices with small screens (e.g. smartphones).
- Make sure the camera and microphone on the device(s) are working.
- Make sure the batteries in any device(s) are significantly charged and/or that the device is plugged in.
- Make sure that the technology is on a sturdy surface and out of the child’s reach.
- Your provider may do a “test call” with you to make sure that your technology is working as necessary for the session. If they do not offer to do a test call, you may request one.
- If you are unfamiliar with how to set up your technology, ask if someone from your provider’s office can walk you through it over the phone.
- Prepare your child.
- Just as you would for an in-person appointment, make sure your child is awake and alert well before the appointment.
- Let your child know what to expect.
- If this is their first telehealth visit, explain what the appointment is for and relate it to their prior experiences with doctors and medical care or treatment.
- Explain what will happen in the appointment and how long it will take. Give them a step-by-step description if possible. You can use tools like social stories if that works for your child.
- If your child will be seeing a new or unfamiliar doctor or another provider, tell your child the provider’s name and, if possible, show them a photo of the provider.
- Introduce your child to the technology after you set it up for the appointment. If your child is able, encourage them to test out the technology themselves in the way they will use it during the appointment. For example, they can Zoom with a family member or friend.
- If your child is not used to wearing headphones but will need to for the appointment, have your child practice wearing them before the appointment.
- As long as they will not interfere with the treatment, have snacks, toys, and/or any comforting items available so that your child will feel at ease during the telehealth appointment.
During the Appointment
While the appointment is underway, parents and caregivers can take steps to ensure that it runs smoothly. The clinician may ask you to engage in different ways based on the nature of the appointment, but these tips can apply in general.
- Begin the appointment by introducing the child to the doctor and vice versa and reminding your child what the appointment is for.
- Share any relevant updates with the provider. If any updates are sensitive and should not be shared in front of your child, do that before the appointment or before your child is in the room or within earshot.
- If possible, keep the door closed. This will keep the child in view of the provider and provide a degree of privacy.
- Make sure that you are able to receive texts/calls from the provider during the session, in keeping with the communication protocol you established beforehand. This will enable the provider to instruct you directly and, if you are texting, it will allow you and the provider to communicate about anything that your child should not be privy to.
- Make sure that you have time during or after the appointment for you to talk with the provider directly, without the child present.
- As the saying goes, even the best-laid plans can go wrong. If the appointment does not go according to plan, that’s okay. Work with your child and your provider to develop ideas for improving future appointments.
Advocate for Telehealth
Whether you are just starting a new treatment service or continuing an ongoing care relationship, ask your provider if there is a telehealth or hybrid option available. In Ron Oberleitner’s experience with telehealth research studies and in seeking treatment for his son, he has found that “the best autism providers are eager to incorporate telehealth, because they realize delivery of their clinic’s expertise is accelerated, while simultaneously reducing the burden the average ASD family endures to continue needed treatment for their children.” These benefits are borne out in Dr. Pollard’s experience as well. She adds, “We have often heard from families that telehealth is their preferred method for ongoing care for their child. Families are often able to connect more quickly with their provider when they have a question and more easily receive after-hours support when needed.” You may be surprised to learn what providers have available or what they are willing to explore.
- “Autism Telehealth: Engaging Autistic Children Through Telehealth” by Dr. Marlene Maheu
- “How can I help my child who has autism spectrum disorder take part in telehealth visits?” by Dr. Kristin Sohl
- “PFA Tips: Telehealth Appointments” by Dr. Alizah Patterson
- “Telehealth therapy tips for children and teenagers with disability or autism: making the most of it” from Raising Children Network (Australia)