2018 Report to the UN, pt 7: Health Care – Lack of Access to Appropriate Care

NOTE: We have split our UN report on Human Rights for Autistics in Ontario into sections and are blogging them. This is our section about access to health care, including dental care.

Health Care: Lack of Access to Appropriate Care
According to a study by the Redpath Centre and University of Toronto, in Toronto between 1998 and 2008, 14 per cent of the autistic youth surveyed had a hospital stay (lasting longer than 12 hrs) and 20 per cent accessed emergency services for “psychiatric or psychological problems.” When autistic Ontarians access services, their experiences are mixed.

Since the passage of Ontario Bill 168 in 2010, which allows health care providers greater leeway in refusing to treat, more autistics are being turned away from appropriate medical care once their diagnosis is revealed. “I want to share my diagnosis because it could help in my care,” says a member, “but I’m afraid it could affect whether I get care.”

A parent recalled: “When my son was experiencing suicidal ideation, we called a crisis hotline. Because he is autistic, they didn’t offer help; instead they referred him for ‘behavioural services’ (ABA). I know of two other teenagers who are autistic who were taken to Emergency during suicidal episodes and were discharged because the psychiatry unit in ER was not ‘equipped’ to help autistic people.”

Autistic people in Ontario can also face a lower quality of care due to medical professionals’ lack of understanding about AAC and other communication methods in appointments. Some have also had difficulty getting timely care due not having communication access to the phone. This is slowly improving with increased availability of online appointment-making.

Lack of accommodation for processing time is also an issue in care and after-care instructions. As one member wrote: “Before I know it I’m being pushed out the door. I have no time to process information, ask follow-up questions or even the questions I planned to before coming in.” Many autistics prefer written to verbal communication and can get better care if they email the MD prior to the appointment and receive written, not just verbal, instructions.

Other autistic patients face barriers due to interoceptive differences or the way they communicate their symptoms to medical professionals who may not understand. One of our members writes: “When I’m in pain or distress, I speak louder, quicker…and it’s read as aggression, anxiety, or (in the case of an incident with the paramedics last year) meth overdose.”

Some autistics do not access dental care due to its prohibitive cost (it is not covered under provincial health care and may autistics do not work full time/have supplemental insurance). In addition, for autistic adults who may have experienced drugging or straightjacketing earlier in life, PTSD is a barrier to dental care. Luckily, some dentists have the knowledge to provide sensitive care, but they learn these skills outside of dental school, where it is not required.

Unfortunately, there are also dental clinics that state they “specialize” in treating autistic children but who really specialize in giving expensive general anesthetic procedures for a range of dental needs, including regular cleanings. One mom reports: “We visited an ‘autism expert’ dentist who said our daughter had 4 cavities and would need to come back and go under a general [anaesthetic]. We said no. We took her to a regular dentist who was relaxed and eased her into cleanings. She didn’t need to be knocked out and she also didn’t have four cavities!”

This points back to the two-tiered system of risk management within medical care in Ontario. General anaesthetic on young children carries significant risk. Why is a dentist promoting an expensive, last-resort option as the only way to treat autistic kids? Is there a watchdog who inspects the clinics for questionable practices, or is the onus solely on individual families to go through a formal complaint process that may lead nowhere?

Clinics make a lot of money offering “easy” solutions to worried parents in place of healthier, cheaper, feasible options. They are part of what’s known as the autism industry, where adding a puzzle piece to one’s company logo allows a company leeway in costing and in the quality of the services provided… because “autism”. These providers view the parent as the client and the needs of the autistic person – who is the patient!– are brushed over for the sake of convenience and profit.

Read the full report