Sunday, 15 March 2020
Coronavirus, Autistic Patients and Hospital. Top Tips for Teams
1 in 30 of your Coronavirus Covid-19 patients is likely to be autistic. That's the number of autistic people in the population. It's a lot. How you enable their care will make a big difference to outcome. Ideas have to be doable. After all, you have a lot of patients. So, here's some fast tips.
Above, how a medical room looks to me, as an autistic patient. A personal example. Blinding. The strobe-light effect from fluorescent overhead lighting, which some of us experience. The stench of medical chemicals. The utterly deafening background noise. The awful pain of medical examinations, thanks to a different pain and sensory system.
Autistic people may need some stuff to happen, to help raise chances of a good recovery. None of it is hard, and all of it may help others too. Remember that autistic people are of all ages & backgrounds, genders and IQs, & may do any job, including healthcare roles.
Here we go:
1. Look for info. From the person. (Most of us can talk, though of course in an emergency with this virus, maybe not). From a loved one in their life, or a carer if they are one of the small number in care services. An Autism Hospital Passport, e.g. at
https://www.autism.org.uk/about/health/hospital-passport.aspx or maybe an autism ID card with handy hints on it. If they cannot complete the form, can a relative help with this, perhaps? Put the form somewhere where teams can glance at it for ideas, often.
2. Check whether they use noise cancelling headphones, or sunglasses to cut down on background noise and glare. These make such a difference to many. Keep glare from overhead lights out of their eyes where you can.
3. Be really clear. None of this "I'll be back in five minutes", when you actually mean, "I've no idea at all when I'll be back, but it may be between 2 and 20 minutes". That will cause huge anxiety. Say what you mean. Exactly what you mean. Calm, clear, short, accurate statements.
4. Be gentle, wherever possible. We're not joking when we say something hurts, or when we scream in pain. Quite a few have hypermobility syndromes that can impact on joint pain levels etc. Using an oxygen mask? It may help to cushion or smooth the edges in some safe way, to take away the feel of something stabbing the skin. Be aware that some won't know how much pain they are in, so a standard pain scale may not have meaning. Collaborate with them and with carers to get best answers.
5. Also be mindful that our bodies can give useless feedback on how we are. Made worse by a lifetime of some being trained to always say we're fine. Use your medical skill. Check it out, using whatever quick, gentle tests you have to hand.
6. Many of us use repetitive sound or movement, especially when stressed. Might look strange, but it's a good coping mechanism. Don't try to prevent it unless it's clearly dangerous for us to be doing whatever it is.
7. Do allow items of comfort and meaning to be left with us, wherever possible. Or, if possible, additional visits or contact somehow from a loved one (where that can be made safe).
8. We're already likely to be desperately short of sleep. Anything you can do to encourage rest, in a quieter area, with lower light levels, is going to really help.
9. Quite a few will respond to the pain of rough hospital gowns by trying to take them off. It's similar to you being forced to wear barbed wire or sandpaper. Got anything that isn't rough to the touch?
10. Allow thinking time for questions, if the person is able to respond. And try where possible to keep to the same team around that person, so they get used to communication and subtle signs of difficulty.
Lots of the autistic - led organisations can provide background help and support. Reach out to them.
And thank you for being on that front line, putting your own life and health on the line to help others.
It's truly appreciated.