How to Prepare Autistically for COVID-19: Essential Tips from an Autistic Doctor

Written by Emma Marsh with Dr Sarah @autisticdoc

This article is created for informational purposes only. It is not intended to be a substitute for professional medical advice, diagnosis or treatment and should not be relied on as personal health advice. Always seek the guidance of your doctor or other qualified health professional with any questions you may have regarding your health or a medical condition.

When the only certainty in life is uncertainty, times can be fraught, and Autistic people are especially vulnerable.

Without our usual support networks in place and with many of us dealing with co-occurring inflammatory conditions and autoimmune dysfunction which puts us at greater risk of poorer prognostic outcomes, the struggle is very real.

However, in many ways, Autistic people are bestowed with qualities that are huge strengths in these unprecedented times. For instance:

• we can be master social distancers,
• we’re exceptional at following a good set of solid, unambiguous rules,
• we know how to get in and out of a supermarket with lightning speed,
• and we have been masking up in social situations since before it became de rigueur.

Also, we can be expert planners! With this in mind, I spoke to an Autistic doctor and asked her to share her top tips for preparing and managing COVID-19, as an Autistic person.

Firstly, if you are yet to contract COVID-19, it’s your opportunity to plan ahead! First steps:

• Level up your Autism! Dr Sarah says we know that the best form of defence is to make sure you’re fully vaccinated and have had any boosters required. Every Australian aged five years and over is now entitled to free vaccination. There are COVID-19 vaccination clinics tailored to people with disabilities, including sensory-friendly and therapy-dog vaccination clinics. Click here for links to those in each state of Australia, and remember to pack your own headphones and fidgets to help manage your anxiety when getting vaccinated.
• Stock up on your meds. Paracetamol and Ibuprofen are very useful for COVID-19 symptoms such as pain and fever, so stock up (unless you have a medical reason not to use these medications). Have a supply of tissues, hand sanitiser and throat lozenges for you and your household’s isolating residents as well as adequate supplies of any medications you regularly take.
• Purchase a pill box (or make one). COVID-19 can cause lethargy and brain fog which can wreak havoc with executive functioning. Have a pill box handy (or craft one from an egg carton) so you always know which meds you have already taken.
• Prepare for dry times. Some people with COVID-19 experience vomiting and diarrhoea which can lead to dehydration. Ensure you have tried and tested some oral hydration solutions and stock up on one that has a taste and texture that suits your sensory preferences.
• Plan ahead to accommodate your sensory differences at mealtimes. It’s very important to keep eating and drinking and this is easier if you have quick-to-prepare, sensory-friendly foods on hand. “The loss of taste that you will get as part of your COVID-19 symptoms is really going to change your sensory experience of eating,” says Dr Sarah. “Food will not taste how it should. It will have little, or no, flavour. What that means is you’re going to experience food just based on its texture. One of my sensory experiences, as an Autistic person, is that I’m quite sensitive to food textures. Without taste to balance the sensory experience of eating, the texture is going to be even more overwhelming. So being able to choose the right foods and manage your sensory reaction will be quite important.” Dr Sarah recommends trialling and stocking up on supplement drinks such as Sustagen or Lucozade in order to get in nutrition through fluids if you have texture sensitivities.
• Get tech-ready. Check your thermometer is on hand and has fresh batteries (if required) and consider purchasing a pulse oximeter from a pharmacy or online. A pulse oximeter is a small device that clips onto the end of your finger and estimates the amount of blood oxygen saturation in your blood and your heart rate and can be purchased with NDIS funds. By monitoring your oxygen levels at home, you can be reassured your lungs are adequately oxygenating your blood. Alternatively, low levels of oxygen will help you know when you need urgent medical care. “I think an oximeter is useful for Autistic people because it’s a concrete and objective measure of your oxygen levels that you can see,” says Dr Sarah. “It’s not asking you to tune into your own symptoms and how they’re changing day to day which can be difficult for those with interoception differences.” The Royal Australian College of General Practitioners patient booklet is a great resource for managing COVID-19 at home. It includes information about how to use an oximeter, what oxygen levels are safe and how to know when to call for help.
• Use phone hacks to overcome overwhelm. A trip to hospital can cause sensory overload which can lead to shutdown and communication difficulties. In advance, take photos of all your prescription medications with your name and dosage sticker, details of your Autism and any co-occurring medical conditions, any allergies you have and your blood type. Create a folder of these photos on your phone and share it with the medical staff to minimise mental load.
• Use your disability funding. Look at what other temporary COVID-19 support measures you can purchase with your disability funding. In Australia, the NDIS has a number of supports available to participants during the pandemic. Items include personal protective equipment (PPE), one-off deep cleans if a participant has a support worker attend their home who tests positive, and low-cost assistive technology for support continuity. This can cover items that help you access telehealth services like tablets and wireless headphones.
• Make a COVID-19 Plan and share it with your support network. This will help you manage your support needs while isolating at home and know what to do if you or someone who supports you gets COVID-19. (Click here for the Easy Read version.)
• Prepare yourself for a COVID-19 test. COVID-19 tests can be uncomfortable. Read this COVID-19 test social story or this Easy Read version so you feel prepared. Dr Sarah says if you go to a testing centre, you can ask for and feel a COVID-19 swab beforehand. You could even practise at home first with a Q-tip or ask the testers whether you can insert the swab yourself in order to feel more in control of the process.

If your test comes back positive and you are managing COVID-19 at home under the guidance of your GP:

• Knowledge is power. Read the Royal Australian College of General Practitioners patient booklet. It’s a terrific resource for managing COVID-19 at home.
• Save the Australian COVID-19 Hotline number to your phone. The number is 1800 022 222 and is available 24/7 for people needing information about getting a test, or getting medical help/treatment.
• Check in with the online COVID-19 Symptom Checker. Those with communication differences might prefer to check in with the COVID-19 Symptom Checker. Available online and anytime, by answering a few questions you can find out if you need to get medical help or be tested.
• Have support on call. “Have a support person who can call twice a day and check in on you. If you are admitted to hospital, visitors will be limited. You may not be well enough to absorb a lot of information about your health and treatments,” says Dr Sarah. “Nominate a support person to phone and speak to you, and your treating doctors, each day. You, and your loved ones, should be included at each step of medical decisions.”
• Keep nourished and hydrated. Keep eating and drinking. “If you can’t eat or drink, call for help immediately,” says Dr Sarah.
• Technology is your friend when interoception is challenged. Set alarms on your mobile phone reminding you when to eat, drink, take your next medication to keep your fever down and check your temperature or oxygen levels. Message the results to your support person so that they have a copy, and if you go into hospital you have a timeline of how things have progressed.
• Check in with your breath. “The thing I would want all Autistic people to do would be to look out for increasing breathlessness,” says Dr Sarah. “That’s a hard one for people with interoception difficulties so practise tuning into how your breathing is from when you’re lying down, to when you’re sitting up, to when you’re walking.”
• Finally, hypervigilance is not always our enemy. There is nothing to be lost in raising the alarm early. Don’t feel guilty for feeling vulnerable. You are vulnerable and you do need extra support. “Autistic people can and should expect excellent, inclusive healthcare, although the medical profession still has a long way to go on this,” says Dr Sarah. “Neurodiversity needs to be everyone’s business in healthcare. I recently took my Autistic five and seven year olds for their first COVID-19 vaccinations. The nurse asked my seven year old, “Would you like to sit on the chair, or mum’s lap?” My child answered matter-of-factly, “No. I want to sit on the floor,” and promptly did so, in the middle of the treatment room. The nurse smiled warmly at him and me. “Sure thing!” she replied, and without missing a beat she joined him there on the floor and gave him his injection. Now that’s inclusive healthcare!”

To read about Dr Sarah’s life as a late diagnosed, Autistic ADHDer doctor and parent please visit her blog, Neurodivergent Doctor.