From our report and recommendations to the Ontario government: Access to health care

We are blogging each section of our Report and Recommendations to the Ontario Government’s Autism Advisory Committee. Read the full report here: Ontario Recommendations- Inclusion is the New Gold Standard

In Canada, health care is a right. Unfortunately, many autistics in Ontario face barriers in access to:

  • Basic health care, such as a family doctor.
  • Mental health services.
  • Dental care.
  • Emergency treatment, such as the ER.

AAC Access
Many providers do not understand how to communicate with AAC users or assume “incompetency” when they meet an AAC user. This creates a barrier to care and can prevent someone from seeking health care when they need it.

As A4A member Derek Burrow, an adult AAC user, notes: “I have had medical staff look at me using my device, and then ask if I needed a guardian to sign it a form for me. Despite me walking in, by myself, and advocating for myself.”

We recommend teaching incoming and established health care practitioners:

  • to understanding the broad communication capacities of AAC users;
  • how to communicate with an AAC user (such as waiting for them to finish typing, rather than talking over them); and
  • the need to keep AAC accessible during any medical care visit.

The Emergency Room
Because some practitioners don’t understand AAC or other autistic communication methods, autistic people may receive sub-standard care in emergency medical situations.

The environment of the ER is very stressful to autistic people, because we take in every single sight, sound, word/click/beep/door slam/yell/sob/whisper, smell and feeling (often including others’ emotions) when we enter the ER. We have heard that NTs can internally block these things out (seems weird, but ok) and many of us have our own external methods for helping to block these out so we can function in this over-stimulating environment. These include:

  • Noise canceling or muffling earphones and ear plugs
  • A stim toy to stay grounded (usually held in our hands or kept close)
  • Talking about a special interest
  • Echolalia
  • Rocking jumping or spinning, as a form of self-regulation
  • Our phones, to connect with other autistic people and friends/family

When these are not available to us, or if they are and things are going badly, we may go into sensory overload. This can look like:

  • Shut down: going selectively mute, not looking up, seeming unresponsive, being unresponsive.
  • Meltdown: crying, yelling, screeching, flailing, falling, swearing (Note: some of us also have Tourette’s).
  • Any versions of the above and others.

These responses could usually be prevented with sensory considerations and communication. They are frequently misunderstood. As one of our members, who had reached the breaking point, recalled “The EMTs thought I was having a meth withdrawal.” Autistic people are vulnerable to abuse, systemic violence or denial of care in these situations, especially those who are Black, Indigenous, People of Colour or Trans.

We heard from members than some are afraid to give their autism diagnosis when receiving EMT care or even decline to seek care because of stigma and fear. Ontario Bill 168 (2010) which allows health care providers greater leeway in refusing to treat, is also a factor. “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.”

Inclusion in the ER
Here are some simple ways that ERs can make their spaces accessible to autistic patients.

  • Follow our AAC guidelines for communicating with AAC users
    • Acknowledge the AAC, to help the patient feel comfortable.
      • Say “I see you use AAC. I’m glad you can use it to talk to me.”
    • Ask for clarification.
      • If you didn’t see what the person pointed at, or if you missed some words, ask for clarification. “Sorry, could you repeat that?”
    • Calmly wait. If a patient is using a system like ProLoQuo, it will take some time for typing and having the voice speak the words. Avoid talking over them or starting up new topics; just be quiet and wait till they are done typing.
  • Implement anti-racism/anti-bias education with related policies.
  • Noise canceling or muffling earphones and ear plugs available for use by patients.
  • Phone chargers on site so that autistic patients can stay connected to support people.
  • Stim toys available — offer them to patients.
  • Never take someone’s special object away. If medically necessary, keep it within sight or have a plan of where it goes, so the person feels secure.
  • Ask about a special interest.
  • Let the person know that they don’t need to make eye contact, that you understand.
  • Provide written information of everything said, as many of us will not process everything and this can affect aftercare.

The Problem of Stigma
Sensory overload, previous bad experiences and PTSD can also create fear of seeking services. For example, past restraint in pediatric dentistry or abusive autism “therapies” can make autistic people avoid seeking health care.

Stigma prevents many of us from acknowledging sensory overload, from explaining our communication methods or sometimes even from giving our diagnosis. We worry about being judged and then treated poorly especially if we’ve had bad experiences in the past. At the same time if we don’t give this information, practitioners may misinterpret important communication, sensory or interoceptive factors among others.

Stigma disconnects us too: for example, some practitioners assume autistic patients aren’t engaged without eye contact, so they only address the patient’s parents. Autistic patients may feel stigmatized, left out and are less likely to return for care.

If we can be open about these factors, it can help make it a better experience for everyone. Most helpful is when practitioners meet us halfway, by showing knowledge and acceptance of autistic ways of communicating, moving and being.

Recommendations: Health Professional Education

  • Training for both homecare support workers and staff in long-term care facilities for understanding how to best support autistic people as they age.
  • Partner with medical schools to create an education module for health care practitioners (especially ER) on how to communicate with AAC users.
  • Recommended unit for medical schools: “Ask an Autistic,” where autistic people discuss their end-user experiences to educate incoming professionals on communicating with autistic patients.
  • Recommended education unit for dental students: trauma-informed care for autistic patients. Evaluate and update existing programs.
  • Support online tools for autistic youth and adults on communicating with health providers and institutions (Tools should be created by autistic individuals in partnership with medical institutions).

Human Rights and Autism Pseudoscience
Autism pseudoscience (or so-called “biomedical autism treatments”) do not have any positive effect on autistic children and there is no medical basis for any of them. They are dangerous and potentially deadly to autistic children. They cause psychological damage, including PTSD, to the children who are forced to endure them.

All autism pseudoscience causes psychological damage to the children who are forced to endure them. Also, the myth that autism can be removed from a child leaves no room for parents to accept their child for who they are. A child who is being told they will be “detoxed” until no longer autistic, is not given the opportunity for healthy self-acceptance. When the miracle cure doesn’t arrive, it can have devastating consequences for the child and family.

As the Westminster Commission on Autism (UK) writes in its report recommending improved policy and practice on autism pseudoscience: “Health care fraud is big business and autism is one of its many targets.”

The United Kingdom has recognized the problem of autism pseudoscience and is working to create more regulations around it. (We encourage you to read their informative and engaging report). Canada lags behind, still largely relying on so-called “self-regulating” colleges to keep practitioners in check. The problem is, this doesn’t work and children are in danger.

Testimonial: Autism pseudoscience
This year, when one of our members, a mom, complained about an MD performing chelation on autistic toddlers in Ontario, the College of Physicians and Surgeons of Ontario (CPSO), the regulating body of physicians in Ontario, rejected her complaint and took no action. She had shared with them a case where a child had died from chelation for autism; a case that inspired the UK to reform its regulatory system, as well as stacks of medical evidence from autism experts that chelation for autism has no evidence of benefit and clear evidence of harm, pointing out that chelation for autism is banned by the FDA and the NHS for these reasons.

Nevertheless, the CPSO gave its endorsement for chelation to be performed on autistic children, stating that chelation for autism was a “valuable and evidence based” form of complementary medicine that fit within their guidelines. The physician, who has sat on several CPSO committees, continues to practice chelation on autistic children today, despite universal condemnation of the practice by autism experts, the FDA and the NHS. The complainant, Anne Borden King, told us:

“I thought I would get a letter back saying they would stop him from doing this. I am still in shock that they have done nothing.”

This case demonstrates the need for provincial oversight into autism pseudoscience. Self-regulating bodies are not taking action to stop pseudoscience on children. Policymakers must reconsider our province’s overly-broad definition of proxy consent, in the interest of child health and safe.

Recommendations: Regulate Autism Pseudoscience

  • Genuine government oversight of medical professionals to ensure that autistic children are not exposed to dangerous quack treatments.
  • A provincial “do not use” list of autism “cures” such as chelation
    • This can be modeled on the NHS’s Do Not Use For Autism list and the FDA’s list of banned autism “treatments”.
    • Right to consent laws that protect children from harmful autism pseudoscience like chelation.