Home Support during lockdown

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.

10 thoughts on “Home Support during lockdown

  1. You know, they are correct. An activity or a person isn’t safe or virus-free simply because the government says it’s okay. She could just as easily be bringing the virus into your environment – and if it is already in your environment she could just as easily be spreading it to her other clients – as your in-laws. It’s difficult but you need to think past the rules for the science. Couldn’t you meet with her, and your wife meet with her parents, outdoors, staying at least 6 feet apart? For everyone’s mental health during this you need to find a way to be inventive, think of how the virus is transmitted and acts to stay safe, the laws of science are more absolute than the laws of government, especially when it comes to a matter of science.

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    • Hi Sandra,

      I understand your point of view but I’m afraid I don’t share it. I didn’t make it clear in the post that this carer supports both of us (myself for 6 hours, my wife for 3, but with significant overlap), so it’s not the case that I have support and she does not.

      The history with this particular family member is that they alternately either don’t believe we have autism and therefore don’t need any help, or that we contracted it through the MMR jab. This is simply the latest attempt to erase our disability and make us more malleable to their influence by separating us from our regular support structures.

      And a disability is a disability, whether it’s visible or not, physical or mental. Nobody would say a person in a wheelchair shouldn’t have carers to help get them out of bed in the morning; equally, it’s not okay to suggest people who are statistically ten times more likely to commit suicide than neurotypical people (https://www.spectrumnews.org/features/deep-dive/hidden-danger-suicide-autism/) should simply ‘man up’.

      In regards to my wife visiting my in-laws, I think it’s wrong for two reasons. Firstly, my in-laws are in a much greater risk category in terms of age and underlying health conditions than we or our are, or my 30-year-old support worker;

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    • Sorry, clicked submit by mistake…!

      …and I’m not sure they’re isolating anyway. Secondly, all non-essential travel is banned – driving 15 miles through three towns to visit a family member, even standing outside at a distance, is hard to categorise as ‘essential ‘.

      Just my thoughts, but I appreciate your feedback and I’ll certainly continue to think about it.

      Thanks again,
      Gillan

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  2. Have you tried a support session via telephone, or skype/zoom/other video conference ?

    I see your idea of a group of households that is still closed, but the more people in it the harder it is to be sure it really is closed.
    If you couldn’t get out of bed without help, your support worker would have to come around, but I bet she would have got you to try getting up on your own, so that she only helped where it was really needed. Can you try one virtual and on “in person” session a week ?

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    • It’s certainly something to consider moving forward. Whether it would work or not is another matter, since my wife and I both struggle with communication – I can be erudite, open-minded and articulate in writing, less so in person, perhaps because writing and speaking use different parts of the brain, and I can edit before I hit ‘send’! But I’ll definitely give it more thought.

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  3. I’d like to comment as someone who knows the family. The family has hours of support every week from both sets of parents. This now not being possible already puts a strain on the family. Add to that the children being there 24/7. Therefore the autism services support is not just necessary but vital at this time. There isn’t enough hours given already, hence the parents contribution. The family do amazingly well, but without the support things can & would very quickly fall apart.

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    • Yeah, I guess it’s a toss-up between one support worker on the one hand vs. parents, social services, child services, the community mental health team, a GP for sectioning and the police on the other!

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  4. I agree that the 6 hours of support is vital probably even more so at this time. The rationale around the spread of infection and keeping family/friends at a distance is also right. I hope you and your family stay well, safe and sane. Thank you for your blogs. Can I ask if you are happy that a link to them is shared on Facebook. I would like to recommend it if possible. Regards Karen Wilmshurst

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    • Yes, that’s absolutely fine to share, and thanks for your comment. I’ve been called ‘irresponsible’ and ‘selfish’ for having sessions, even though without them I’m liable to end up on a psych ward or worse. I’ll admit, having another nervous breakdown terrifies me, because I almost didn’t survive the last!

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