Improving the health-care experience for autistic patients: The Autistic Health Access Project

When medical students ask a question in the seminars I co-lead about autism and health care, they have to wait for the answer. My co-presenter, Darla, uses a text-to-speech based alternative communication method (AAC). It takes time for her to key in the reply and the vocal response to emit from the device.

These students are learning to engage in a practice that medical providers should when treating an AAC user: waiting patiently for an answer. This is but one example of praxis in the Autistic Health Access Project’s seminars (presented by Autistics for Autistics Ontario). In fact, the act of tuning in to autistic people as authorities of their own experiences is a departure from the norm and one that we hope medical students will apply throughout their careers.

Although anyone in medical care may have an autistic patient, few practitioners have ever received education on caring for autistic patients. At many Canadian medical schools, the so-called “autism unit” is one to two hours, typically led by a social service agency and focused on identifying autism in young patients. This approach doesn’t provide future practitioners with the skills needed to respond and relate to their autistic patients and their actual health needs. Without training, practitioners lack the communication tools that then create access barriers and can lead to medical mistakes. In addition, autistic adults may avoid medical care when needed because of previous access issues.

Medical schools can build a better system of care and improve health outcomes for countless patients by bringing in autistic patients to speak directly about access needs.

We came up with the idea for our one-hour seminar that we now teach at University of Toronto, Queen’s and other institutions in Ontario because we saw an education gap in our medical schools. While there is some autistic-led training in the United Kingdom and some ad hoc efforts in the United States, ours is the first program of its kind in Canada.

Initially, there was skepticism about our seminars. In the week before our first seminar in 2019, a representative of an autism service agency that was also presenting told us: “These students are very tired and have to attend a lot of seminars. Don’t be disappointed if some of them pack up their things and leave before the session is over.”

Spoiler alert: nobody left early. They lined up to speak with us after our presentation had ended. As it turns out, medical students are craving this kind of direct exposure to demographic-specific patient experiences.

There are three overarching differences in treating an autistic patient: communication, movement and sensory responses. For example, about 20 per cent of autistic people use AAC to communicate and there are specific protocols for communicating effectively. Many providers don’t know that it’s important to wait quietly as someone types/inputs a response rather than talking over them, looking over their shoulder (don’t do this!) or rushing to a new topic. It’s also important to know that some autistic people have auditory or other barriers to using the phone. Making email or text-based options available for appointment scheduling helps. Many autistic people do not make eye contact while listening (especially to important information), so practitioners shouldn’t assume that someone is not listening just because they aren’t making eye contact. As well, in all clinical settings – and especially in a sensory-intense environment like an ER – key information should be communicated in writing, not just verbally. This is also important for after-care instructions.

Medical schools can build a better system of care by bringing in autistic patients to speak about access needs.

In a noisy or chaotic environment, or any new environment, sensory input can be overwhelming for an autistic person. Most use movement to cope with sensory overload: pacing, spinning or flapping hands are all means of self-regulation (a process known as stimming). Unfortunately, stimming can be misinterpreted. One member of our group reported that an ER nurse thought she was high on drugs because she was stimming. Some autistic people can lose their voice when overwhelmed –  known as situational or selective mutism – and require access to alternative modes of communication (such as pen and paper or a device like an iPad). Autistic patients (like all patients, really) have a broad range of interoceptive experiences that can include hyposensitivity or difficulty articulating sensations. Asking patients to describe pain on a scale of 1 to 10 is no substitute for a physical exam.

Objectification is an often overlooked problem in autistic health care. We hear from members that when attending appointments with their parents or caregivers (as children or adults), they have been sidelined by practitioners who talk with the parents/caregivers instead of them. This is not only alienating but also compromises care. We encourage practitioners to always speak directly to their patients and to understand the difference between patient and parent. It doesn’t matter if patients are 2 or 10 or 20 years old, nor how they communicate, move or express themselves. The autistic person is the patient – the parent isn’t the patient.

Autistic Canadians have long been the victims of a deep-seated paternalism denying disabled people the right to shared decision-making. The medical model presents autistic people as a broken version of normal. It is telling that one of the main therapies still funded in Canada is applied behaviour analysis – a Skinneristic model whose main goal is compliance, not quality of life. Myths about autism continue to play out in how some providers approach autistic patients.

Providers and patients may also experience a disconnect known as the “double empathy problem.” As Damian Milton, a sociologist and researcher at Kent University (who coined the term), notes: “Social interaction involves more than one person, and so empathy difficulties logically (are) problematic for both parties.” New work by sociologists such as Noah Sasson, Catherine Crompton and Sue Fletcher Watson bears his theory out, highlighting the mutual communication differences and misunderstandings between non-autistic and autistic people.

How can we drive new understandings of shared decision-making that centre autistic patients as subjects– not objects – of health care? Our group has tried to get the ball rolling by sharing autistic health-care experiences. Our hope is that more universities will adopt these programs and make them integral to provider education (preferably for more than just an hour). With more focus on learning from autistic experiences, future health-care practitioners can adapt their practice to improve health outcomes.

“It’s about being a lot more respectful of autistic ways of being and working with that,” says Milton, “rather than trying to take away the autism, as if it’s separate from that person, which a lot of the old models try to do.”