improving health care for patients with autism

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.

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.

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.