We are blogging our report and recommendations to the Government of Canada, by section. Below is our discussion and recommendations about health care access and community education.
Full report: A4A National Policy Report & Recommendations, 2019
Access to Health Care
We advocate for a national education program for health care professionals to train them on AAC and communicating with autistic patients, as well as simple steps to make hospitals, clinics and the dentist more accessible for autistic people. This education program should have autistic self-advocacy organizations in the lead for developing materials and outreach.
Like everyone else, autistic people need health care. Unfortunately, communication barriers and sensory differences limit our access to health care. This can affect our ability to seek care and the quality of the care that we receive, especially in the ER.
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 one of our members 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.
The results can be deadly, as in the case of Oliver McGowan, an autistic teen who was in the ER following a seizure and was given a powerful anti-psychotic to which he did not consent and which his parents repeatedly told doctors he had previously had an adverse reaction to. He died from Neuroleptic Malignant Syndrome, brought on by the medication. As Oliver’s mother has said: “We strongly believed that doctors were misunderstanding Oliver’s normal autistic behaviours.”
Autism pseudoscience
Autism pseudoscience (or so-called “alternative” or “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.
Our federal government needs to follow the UK’s lead and take action. Please read our Physicians’ Guide to Autism Pseudoscience for more information.
Recommendations: Health care
Practitioner training
- 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.
- Alternative: support and promote independent efforts at these education modules.
- 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.
- Alternative: support and promote independent efforts at these education modules.
- 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, not by “autism service” providers).
Recommendations: Regulating pseudoscience
- Genuine government oversight of self-regulating colleges (chiropracty, CPSO) 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.
- A provincial “do not use” list of autism “cures” such as chelation:
Community education
Canada has little in the way of community education programs to keep autistic people safe and allow us access to necessary services. As mentioned, 99% of Canadian medical students are not trained in speaking with someone who uses AAC (and 25% of autistics are nonverbal or semi-verbal). As well, two thirds of all first responders have no training in communicating with autistic people. These barriers, as well as other communication and sensory barriers, prevent us from getting the care we need and can even lead to deadly results.
Recommendations: Community Education
- Education on autistic- and trauma-informed approaches to first responder services, medical care and other areas of life, so that we can be included and have the access to keep ourselves healthy and safe.
- ALL community education programs MUST BE informed by autistic educators and overseen by government and autistic self-advocacy organizations, NOT autism service organizations or charities.