As a person with autism and depression, and a wife with both autism and Emotionally Unstable (Impulsive) Personality Disorder, I have home support. This means that twice a week, a support worker comes to my house for three hours to support me with my activities of daily living – making a menu plan, cleaning, washing, sorting the post, basic self-care, and all the things I don’t do when left to my own devices.
This help is essential, not just to keep me safe and hygienic and stop me getting into a mess with my finances and medication, it is my only means of ‘offloading’ my obsessive thoughts and preventing me descending into depression or worse. When you have autism, your thoughts often spiral out of control, particularly when you don’t have time to yourself, and left to their own devices, they can take you to a dark place indeed. Support workers help you put your thoughts safely to bed.
In my book, I explain my need for neurotypical support using a model I made up called the Mini and the Tractor. When those of us with autism are born, we’re given a Mini, while neurotypical people are given tractors. On the roads – those things we can do – we speed along quite happily, and are often able to overtake people in tractors. But either side of these roads are ploughed fields – the things we can’t do. While neurotypical people drive through them at the same speed, people with autism struggle, and bog down and get stuck, and often need a person with a tractor to come along and pull their Mini through the field and put them back on the road. We aren’t better or worse than neurotypical people, we simply have different wheels suited to a different surface.
So I need home support. Not only that, Social Services deem that I need six hours of support a week. I’ve thought carefully about this in light of coronavirus, and discussed it with my autism support service, and since caring for vulnerable people in their own homes is one of the government’s exceptions to the ‘stay at home’ rule, I don’t see anything wrong in continuing to have a carer.
My support worker engages with four other households. The way I see it, if our five households are doing what we should (i.e. staying at home and not interacting with family members), and she’s doing what she should (not seeing friends and family), then we’re a closed unit. If she gets coronavirus and passes it on to us, it will end with us – we certainly won’t be passing it on.
And this is why I believe it’s okay to have a support worker come round twice a week, but not okay to have friends or family round. My support worker is not a friend – she’s a key worker in the field of social care carrying out care in the community. She is here for work, not socialising.
Unfortunately, not everyone in my wife’s family sees it this way.
If I see my support worker, they think they should be allowed to visit too; and if I don’t allow them to visit, then I shouldn’t be allowing a support worker into my house either. That’s right, they think two people who are unable to live independently without support at the best of times should now live independently without support at the worst of them. All in the name of ‘fairness’.
There’s a line from the criminally-underrated What About Bob? where Bill Murray says something like, ‘Treat people like a telephone. If there’s a crossed connection, you just hang up and dial again.’
I used to believe that. Now I think perhaps there comes a time when you have to rip that telephone from the wall and throw it on the bonfire.