The right healthcare, for the right people, in the right way
What it takes for people with autism or an intellectual disability to get proper health services
We’ve all heard people say how hard it is to find a family doctor in Quebec. Now imagine you’re an individual with an autism spectrum disorder (ASD) or his or her caregiver. Perhaps you’re lucky enough to have found a doctor who will see you. A routine medical visit is anything but. At a regular appointment, you check into the doctor’s office and wait to be seen. The waiting room might not be as comfortable as your living room, but it’s fine. You might wait a bit longer than you expected, but you try to relax and read a book. Now imagine this experience as an individual “on the spectrum”. People with autism may experience their environment in a different way. The brain of a person with autism may integrate senses such as hearing and sight differently. Bright fluorescent lights might be a problem because they feel too intense. Listening to others speak might be difficult, and the chatter in a waiting room might seem very noisy. Minutes might feel like hours until the doctor is ready to see you.
The Doctor Will See You Now
Back to your “regular” appointment, and it’s your turn to see the doctor. You enter the exam room, and it’s clear that he or she is very busy. The doctor will check you over, discuss any recent problems, and send you on your way. Let’s shift gears. Now imagine you’re a patient with autism. This scenario by definition takes longer – maybe an hour or more instead of 20-30 minutes. Sometimes a full check-up cannot be completed in a single appointment. The doctor doesn’t want to overlook any hidden symptoms, so he or she has to play detective. If the patient is non-verbal or has trouble expressing abstract ideas, it may be very challenging for the doctor to figure out what’s going on. Furthermore, the doctor must have a very clear understanding of many other aspects of your life if you are the patient, including communication abilities, lifestyle, living situation, etc. In order to write you a consult to see a specialist, your doctor needs to know that all members of your medical team will communicate and collaborate together, to ensure the best possible outcomes for your health. Finally, the doctor needs TIME. Time to really talk to you. Time to really hear you. Time to make sure that you understood well what was discussed.
Now picture yourself at the dentist’s office. Most of us dislike going to the dentist, but imagine that dreaded visit as a person with autism. The same challenges in the waiting room described above still apply. Next, you find yourself in the dental chair, lying down, but not really relaxed. The chair moves up and down and emits a dull mechanical sound. There’s a bright light in your eyes, and one or two dental professionals in very close proximity to your face. One of them might be prodding inside your mouth. Imagine how that feels to a person with autism. Too much sensory information such as this is likely to cause stress and anxiety. Of course, this is not an easy job for the dentist or hygienist either. Once again, they need TIME. Time to explain to you what’s about to happen. Time to go into your mouth very slowly and carefully. Time to show you the right techniques for proper brushing. And finally, given the important links between general health and oral health, they need to communicate with the rest of your medical team. The members of your care team must be specialized in treating patients with ASD, so that they know how to approach a visit with you and they understand the typical health complications associated with ASD.
It Takes a Village
The delivery of health services for people with ASD and/or an Intellectual Disability (ID) is not simple. The sensitivity required to see these patients, and the complexity that must be managed is not commonly taught in medical and dental training programs. The right incentives are simply not in place to ensure access to high quality care for individuals with ASD or ID. So what can we do about this? We need to work with universities to ensure that the next generation of healthcare providers is ready to care for this growing population. We need to work with the government to ensure that our public health network is robust enough to treat this patient population. We need to create a sustainable environment that includes all members of the interdisciplinary team, from occupational therapists, to psychiatrists, to pharmacists, and the list goes on…
“It always seems impossible until it’s done” (Nelson Mandela)
The See Things My Way Center for Innovation has recognized the need for such specialized services in Quebec, and for the right physical facilities to welcome this population. There are some very inspiring examples of this in North America, including the Lee Specialty Clinic in Kentucky, and Dr. Clive Friedman’s dental practice in Ontario. We are dreaming big and building a new model of care right here in Montreal. As we form our team of health professionals and plan for an integrated clinic in a brand new building, we are excited about the future possibilities for serving patients with ASD and ID. Stay tuned!
PS: check out this article in the New York Times for a touching description of what this is all about.