Sometimes, no matter how much we try  to minimize the stresses, we all have weeks in which too much happens. Everyone will feel exhausted at the end of such a week, but Matt’s exhaustion is different. Before we understood about his AuDHD I used to get so cross at him for this. “I’m exhausted too, I used to think, so why don’t I just get to disengage from life? Why do I keep on looking after the children, walking the dog, doing the laundry whilst you just lie there like you have no responsibility?” Since Matt’s diagnosis I still get frustrated, don’t get me wrong, because when you are exhausted by life you just want someone to help, but I do understand now and that understanding means that I accept the situation rather than fighting it. That acceptance means I am not expending more unnecessary energy being angry and taking more of his energy by engaging him in heated conversations. It means we get back on track quicker.

But what is actually going on here? Why is Matt struggling so much to cope? The concept of autistic burnout is described by Sarah Deweerdt in an article in Spectrum online as “intense physical, mental or emotional exhaustion, often accompanied by a loss of skills” that autistic people experience due to the “cumulative effect of having to navigate a world that is designed for neurotypical people”. A loss of skills. That means that when autistic people are burnt out they can actually no longer do things that usually they can do. At first this seems a crazy concept. If you can do something one day, surely you can do it the next? But living with Matt and really observing closely rather than judging has allowed me to see this in action. When he is really overwhelmed, Matt can no longer make a cup of coffee. He will be unable to put together the string of actions to take medication. At times all he can do is lie there and wait until his abilities come back. He won’t even be able to talk to me or if he does he will forget half of the words. It can be really scary to observe because the person is so unlike the person you are used to. I must admit to thinking he was putting it on in the past. Matt functions so well most of the time, this transition made no sense. But it makes total sense in the context of autistic burnout and seeing that has helped us work better with it.

The important thing is that the effects are cumulative. The more things that an autistic person does that take them outside their comfort zone, the more likely they are to experience burnout. Remember these are things that we take for granted every day: driving, going to a supermarket, talking to people, sitting in areas which have strong overhead lights, being in an open plan office. That is without the extra strain of a difficult week with maybe ill children, extra responsibility, some confrontation at work. All of these things are adding together and building up and when they reach a certain level, the autistic person essentially shuts down until they have recovered to a state where they can function again. Really, it’s a very good adaptive strategy – although not a very good husband strategy! So trying to keep pushing on through autistic burnout is not going to work. The autistic person is just accumulating more negative effects and going further into the burnout. Instead they need to stop and do things that help them to reduce the effects. This might be sleeping for hours – I think the longest I have known Matt sleep is about 18 hours – , it might be engaging in a special interest or lying under a weighted blanket. Unfortunately, it will not be helping you out or even talking to you about why they can’t help you out, no matter how much you need that.

When we realized this our main strategy is to be aware of what Matt is experiencing and try to minimize the time he is doing things that are challenging him. So he would not have two consecutive days of in-person meetings if possible, or if he was having that he wouldn’t also go to the supermarket. He will cook dinner on days he is not working but not on days he is, that kind of thing. In this way we have managed to reduce the episodes of burnout but we can never eliminate them entirely because life doesn’t always go to plan.

So Matt will get burnt out and when he is I have to adopt a new strategy. First I allow myself to feel what I feel. This normally goes through the following  stages: annoyance (why has he let himself get burnt out again?), acceptance (it’s not his fault, it has been a really tough week and he can’t always get the level of things right) and then I think about what I need. Am I also really tired and we can just leave the laundry and the dishes until another day or is it something I do have the energy to do and will feel better after I have done? If the latter, I (try!) to do it with good grace and acceptance that I have chosen this. If the former I leave everything but the essential things and know that tomorrow we will both feel better.